|
These are the stories of others suffering of Fibromyalgia, what
their feelings are and how they're dealing with it. Maybe you can
identify with the writers. Maybe you can learn from their stories.
When you're done reading, you can
share your story too.
| Name - Nickname - Email Address |
Sexual Assault, Rape Survivor Stories-HealthyPlace.com Abuse Issues
Community-Sexual Abuse, Physical Abuse, Emotional Abuse
| Davida -
truthshare@altavista.com |
| Comments - I have only been diagnosed
with fibro approximately 1 1/2 years. Although I know I have suffered from the
symptoms long before this. The symptoms that finally gave my Doc the insight to
make a diagnosis was morning pain and stiffness in the following areas: my
hands, my neck, shoulders, and hips. I had previously complained of fatigue,
depression, general malaise, and the weight of my own body being too heavy on
my tender joints. My doc started me on Ultram, Celexa, and Darvocets for more
severe pain. I was already on Ativan for anxiety disorder, and was/am taking
Ambien for sleep aid. I am currently suffering from shingles, which may have
been brought on by a compromised immune system during my last fibro attack. My
biggest concern right now is that within the last 4 months, I have been having
trouble walking. My legs don't seem to want to work after a certain amount of
use (typical day of walking/climbing stairs at work). Concurrent with this new
development has been knee pain which inhibits squatting or kneeling. My fear of
not being able to walk has taken me back to using my "one day at a
time" mindset. "There is nothing facing me today that I can't handle
as long as God is my higher power." I had been under treatment for
depression, anxiety, and panic attacks for five years before fibro came into
the picture (as far as I can tell). I worked hard in my recovery, learning
relaxation techniques, journaling, meditating, etc. to control these other
problems before fibro became debilitating. I had to go through a period of
depression, anger, and acceptance that I was stronger than any disease. I know
what it's like to lose your family support because they are bored with hearing
how bad you feel and why you can't follow through on your plans AGAIN. Don't
give up! Believe in yourself and in the God that created you. Use your
suffering to encourage others who may be in more pain than you. Thanks for
listening, Davida. P.S. Please feel free to e-me if you would need a cyber
friend who understands. |
|
| Fibronurse -
petfarm@newwave.net |
| Comments - I am a 48 yr old RN who
worked 25 yrs, the last fifteen with some degree of FMS/MPS. It was not until
the death of my father in Sept 98 that "it all hit me at once." I
went from an active, energetic, go getter to an inactive, lethargic, painful
and depressed person who was housebound by infirmary. I had put off seeking
medical attention for the aches and pains, attributing them to approaching
menopause. As a psych nurse, I knew the stigmata attached to FMS, it's all in
your mind is what I would be told. When I finally decided to tell my MD
everything, I had lived in agony for months. My 82 yearold mother needed my
help and there were days I couldn't even get out of bed and brush my teeth, or
bathe due to pain and burning all over my body. I have not worked as a nurse
until lately and even then only part time. But I am on meds that help me a lot.
I am not painfree, but I can do a lot more than I did last summer. I take
Neurontin 300mg in the AM and 600mg at bedtime, I use Flexeril at bedtime, I
take Xanax 0.5mg two times a day, and if the pain is realy bad I have
breakthrough pain drugs that keep me going: Klonopin 0.5 mg with Darvocet
N-100mg. I also take Ambien at night to help me sleep. Well that is probably a
lot more than you wanted to know about an old nurse like me. I also have three
cocker spaniels and three garden variety cats who provide me with unconditional
love. I am doing extensive research on FMS and MPS and would really like to
hear from those of you who would want to share your stories with me. I have
hundreds of sites saved and search for new ones daily. I would enjoy penpals if
you would enjoy that too. I am available at: petfarm@newwave.net I hope to hear
from some of you soon. Thanks for letting me join and may you have pain free
days and restful nights. My fog is bad today so I hope there aren't too many
typing boo boos. {{{{{gentle hugs}}}} Mary Pat AKA Fibronurse |
|
| Marilyn -
angel5000@netzero.net |
| Comments - I have had fibromyalgia for
ten years and not able to work- that bothers me! I not only have pain all over,
but suffer other symptoms like low grade fever, sore throats, sick stomach,
headaches,flushing and so much more. It took years to get a doctor that cared
and willing to help. I have heard many horror stories about doctors and
patients suffering a great deal. I have lived it all and no one should suffer
without help. Fibromyalgia is hard enough to cope with, we don't need a doctor
refusing help or making us feel like we are begging for meds. We need support
and deserve it too. AT one time the pain would get so bad that I couldn't move
in bed and had to be taken to the hospital by ambulance. Finally five years ago
I found a doctor that gave me muscle relaxers and when pain is severe he will
help. Sometimes even a few kind words would help. I have not been to the
hospital in a long time and emotionally I know that I am not alone with
suffering - if the doctor is able to help he will and that is the greatest
relief when you have this painful disease. I hate the pain and not feeling well
every day, but I know I have to live with it.I have lost so much, but I hang in
there even through my sadness. My doctor and husband help me cope and it does
help. I feel for people suffering and only hope that everyone can get the help
they desperately need.I have learned a great deal over the years and that is
how to cope, to do what you need for yourself, and to find the help because it
is out there. I have also learned that it is O.K. to get down,feel sorry for
yourself at times and get angry with what you have to live with. I will never
like this life, but I know I can't change it. I wish everyone peace of mind and
comfort at those difficult times. My tears still flow,but I can help myself
through it. God Bless |
|
| Barbara Beavers -
barbbeav@aol.com |
| Comments - In Feb. of 87 was hit with
250 pds of plastic was diagnosed with MPS. I lived threw trigger point
injections, stretches, physical therphy. In, 1991 I started having aches and
pains I couldn't understand. All of a sudden one day at work I couldn't move my
legs, the act of just alittle movement sent me in a spiral fall backwards. Was
diagnosed with a pinch nerve in my lower back. In 1993, it was almost
impossible for me to play with my children, or to work. My life was falling
apart but with no reason why. Sucide was thought of many times. Here I was
athletic in my earlier years and now I can barely walk a block, or run and play
with my children. I wanted to die..In November of 93 was the last time I could
work. In 1995 was diagnosed with FMS. By this time my sleep patterns started to
change, I couldn't sleep anymore. Or when I did I didn't go into a deep sleep
anymore. My whole body hurt, I felt like a pin cushion. The pain was so
intense. The way I explain it, it feels like someone beat the day lights out of
me. Because of my inability to get around I kept gaining weight and now I am
huge, I can't get it off without excericsing and that is impossible. In 1997,
was diagnosed with sleep apnea. The hardest thing to deal with, fibromyalgia or
Myfascial pain snydrome. Is to look at me I look fine. But, inside I feel like
everything is dead. When your tendons,muscles,nerves are all in a flare you
don't know what to do. Most doctors are afarid to give people with FMS,MPS,CFS
real pain medication, they feel we will all become drug addicts. But, to live
in a body that doesn't work is not living at all............... |
|
| lnlmowing -
lnlmowng@yahoo.com |
| Comments - i have been dignosed with
fibromiyalgia about one month ago and i amexperienceing very high pain in my
neck and shoulder regions as well as my low back and i have no support frommy
mother or any understanding from my family they think that i am just making a
mountain out of nothing at all just a bunch of sore muscles they say just go to
the doctor and get you backpoped in it will help and you will be fine i am
trying to work for a boss that is very negative and very verbaly abusive with
me and then he gets mad when i have to take a day off and i am just in the
process of trying to find all the information that i can about fibromyalgia so
that i have all the tools i know of and know what is available for me and my
boyfriend that is standing by me through all this boy when i told him it was my
turn for him to have to help me I was not exspecting all this i have so many
questions and very few answers I wish that there was some support in my area
like doctors and support groups but it don't sound like it but i've delt with
alot in my life and i will not liet this take me down with out a fight but
somedays the pain is so bad all I want to do is just rock and cry and my head
feels like it weighs a ton and that my neck don't want to support it on my bad
days but what next is what i ask but i will keep in touch and update this
letter soon signed lauri in Idaho |
|
| Mrs. Reed -
dlreed@intelos.net |
| Comments - I have just found out that I
have fibromyalgia. I have been in constent pain since Jan. of this year. They
have me on so much medication I can't even stay awake. I would like to know if
it will ever get better or will I always be in this much pain? They won't let
me drive or stand for a long period of time. I am not really able to walk at
times the pain is so great. Is there in relief for me at all. Please respond as
soon as possible!!! |
|
| Dawn -
scorpion_11_1999@yahoo.com |
| Comments - I was diagnosed with FMS in
Nov 99, I believe that I have it longer though. I have chronic pain, fatigue,
chronic sleep disorder, sever depression, have had to go on disability because
i cannot function at work. My fiance walked out on me two days before christmas
last year. I have a hard time remembering what I did five minutes ago, or even
what day it is. I do the best I can day to day will never learn to live with
this pain, I'm tired of hurting and not being able to sleep. |
|
| Winn White -
winnw@hotmail.com |
| Comments - I am one of those rare
victims of Fibromyalgia, a male. I am 55 years old, married for 32 years to the
same woman, and have two grown daughters. Like most Fibros, I have what is
categorized as a Type A personality, meaning that I have a fairly good
eductaion, have worked hard all my life, and like to help others. In the early
1990's, I went through a period where my wife and I lost three of our parents,
and several friends to various diseases, bring on a great deal of emotional
trauma. In 1994, I began to experience several pains throughout my body, but
blamed this on such things as weather conditions and work. In late 1995, my
right shoulder became so painful that I could barely lift the arm, and after
X-rays and MRI's it was determined that I needed surgery on my rotator cuff.
The surgery was painful, and the following therapy was excrutiatingly painful,
but in time I recovered 90% of the movement of the right arm. However, the pain
through the rest of my body had gotten much worse following this physical
trauma. My doctor ran all kinds of tests, finding no reason for the pain, then
referred me on to a battery of specialists, who also got no results. In 1997 I
finally saw a rheumatologist that recognized my symptoms as being those of FMS.
By the time this diagnosis was finally made, I had been denied any further
disability compensation by my employer, largely due to the fact that nobody had
been able to find a reason for the pain, and they were beginning to doubt that
it existed, except for in my head. I had applied for SSD, and was in the
process of appealing after having been turned down. I went through over a year
with no pay or compensation, while my wife worked her heart out trying to meet
our bills. One at a time we watched this disease lose us everything we had
worked for, houses, cars, credit cards, and even our sanity. By the time my
fight with Social Security had ended we had gone from riches to rags. In 1999 I
finally won the battle, but realized that things would never be the same again.
I decided to try and help others keep this from happening to them by preaching
the need for a daily pain journal, to be used as evidence in their fight for
SSD. I found that the journal, along with the battery of paperwork that I sent
to Social Security, did far more toward my being rewarded compensation than
anything else. With little physical proof through medical testing that I was in
as much pain as I stated, it was necessary for me to keep my own records, and
the journal is how I opted to do this. I cannot emphasize enough how important
this record is. Anyone with questions can contact me at my e-mail address, and
I will be happy to help them set a journal up. |
|
| cin - mitenzz@aol.com |
| Comments - hi, i am a 44 year old woman,
married with an 11 year old daughter, who i fear is showing symptoms of fibro
also. i was first diagnosed 14 years ago, was able to work until feb of this
year. about last august i hit a wall with symptoms, and then it was literally a
down hill battle with meds, docs, wrong diagnoses, i worked for a med group and
was made to see one of our docs who doesn't believe there is such a thing as
fibro! i have been recently approved for ss, thank goodness, i am also seeing a
rheumatologist at lahey who feels he can help me. since last august i have used
a variety of pain meds, now currently using oxycontin and endocet for
breakthrough along with two atidepressants. i fortunately have a pcp who does
not think there is anything fair or healthy about suffering and is not afraid
that i will become an addict. i really feel there is still such a stigma with
fibro, we are considered pesty, incurable, complainers, drug seekers, whiners,
you name it. especially women patients to male docs. i truly hope that my
journey through lahey will afford me some help beyond just pain meds, that is
not my choice for life. in the last few months the fibo has taken over my whole
body, at one point a month or two ago i could barely walk downstairs, the
mornings, as i am sure you know are terrible. cramped hands, pain in spine,
feet, legs, stiffness. i get up, take my meds, grab a coffee and go back to
read until the pain subsides. i am gradually learning to tailor my life,
regardless of family. my husband is supportvive to the point of tolerance, i
don't think it goes much beyond that, and he doesn't want any aids or
treatments that are visible, canes, edema gloves, etc,. the pills you can't see
once taken so that is ok! i have never had offers to do the tough stuff around
the house, vacuum, mop or whatever. he thinks it is great that i am home, i can
take care of more stuff!! my daughter is really worried, she is 11 and doesn't
understand what is going on. she also shows a lot of similarities in pain,
fatigue, depression, my husband says she is just mimicing, he has his head in
the sand! anyway, i would love to hear from anyone, i don't have any support
groups in the area, talk to me, let me know how you cope, feel, deal or
whatever, i check in every day with the computer. thanks for listening!
cin |
|
| Dawn - sweeti8753@aol.com |
| Comments - Hi i am 35 and have been dx
with fibromyalgia as well as ibs chronic fatigue insomia mfp and erithmia. I
have been looking for healthy alternatives to drugs such as vicoden, that I
take for pain. I take tons of baths and am very weak so this will be short
note. For anyone out there with the same situation please feel free to contact
me the more support we all have and get the better we feel and can go on with
our lives as fibromites or cfids people , it is a whole new way of life and
hard to manage on your own. Even if your family says they understand they may
not, especially if they don't have a chronic illness themselves or don't
beleive in doctors etc. So as I have said a million times, support support
support will help you through. Feel free to email me or check out my home page
in aol called You look fine fibro what?. Hugs and laughter Dawn |
|
| alwayssnafued -
alwayssnafued@seeyouonline.com |
| Comments - i am 41 female,had a
hystorectomy and started feeling weak, was told after hiding in my room for 8
months that i had fibromylgia, agoraphobia, a severe case of TMJ, panic
disorder, depression,and the best OCD... i now work part time as a personal
careattendant for a woman with CP. i have a wonderful husband, a 23 year old
son named keegan who is my pride and joy and i live life day by day. i still
have panic attacks they are somewhat milder and less in length. as far as my
body hurting all over and my jaw and head splitting in 2 i obtain brief relief
from chiro and massage.i sleep alot, loose my strenght but i forcemyself to
stay active and positive. this has all happened since surgery and in the span
on 2 and a half years. don't know much about fibromylgia except it hurts and
dr's ignore it. |
|
| wanda - wanda
creecy |
| Comments - well I have good days and
some bad, I've had the sleeping problems five years. A new problem I have is
extreme hair loss. I've lost about half of the hair I had in 6 months. It maybe
from tossing and turning at night or a hidden hormone inbalance all I know is
the doctors in my area act like I'm over exaggerating. |
|
| Wokita -
Wokita@btinternet.com |
| Comments - I was diagonised with FM in
September 96, 2 mths after the birth of my 3rd child. It has been a long hard
struggle, I have endured such odd symptoms like muscular twitching, the usual
pain that is associated with FM, numbness in my legs (I once spent 2 weeks
confounding the doctors by losing all the feeling in both my legs) the
sleeplessness, the depression...things at the time could not have looked worse.
I found that the most destressing thing was my total inability to accept the
doctors diagonis, I spent too many years convincing myself that I had something
much worse (MS comes directly to mind) It has only been recently that I have
accepted that FM is what I have and I hopefully begun to work with my body
instead of against it. At the moment I am confined to a w/chair most of the
time although I get good days and worse ones. I fell 3 times tonight! This is
quite good for me..maybe I'm working for a world record... But seriously... My
advice would be to work with your body, after all you are the only one who
knows your limits.. I also find this number chart helpful. It is a pain chart
to be called on only AFTER you have taken your pain meds... FM Pain Chart. 0 -
Pain Free 1 - Very minor annoyance - mild aches to some parts of the body. No
pain meds needed. 2 - Minor annoyance - dull aches to some parts of the body.
No pain meds needed. 3 - Annoying enough to be distracting. Over the counter
pain meds take care of it. 4 - Can be ignored if you are really involved in
your work, but still distracting. OTC's help for 3-4 hours. 5 - Can't be
ignored for more that half an hour. OTC's bring pain from 5 to 3-4 for 3-4
hours. 6 - |
|
| Carol Hirsch -
hirschcarol@hotmail.com |
| Comments - I was diagnosed with
fibromyalgia ten years ago, but have shown signs of it most of my life-I just
didn't know what was wrong with me, just like most people. I moved to Arizona
four years ago and read about a Dr. who is a Naturopath and has helped many
people with fibromyalgia. She changed my diet. I no longer can have sugar or
dairy. That did help, but, it wasn't until she discovered that I had a thryoid
condition (it didn't show up on any blood tests)that I started to improve. I
still have a long way to go, but I'm definitely improving. I actually am
sleeping some nights-something I haven't done for years. My Dr. cut my
carbohydrates which helps the thyroid function better. With lowering my carbs
and using the treadmill only 20 minutes a day, I've already lost 23 pounds. I
finally feel like there's a light at the end of the tunnel. |
|
| BLynne -
blzonwry@earthlink.net |
| Comments - Three+ years ago, after a
lifetime of writing and editing, I developed severe pain in my neck, back,
wrists, and hands. My neck was frequently in severe spasm. Despite this, none
of the physicians I saw even mentioned the possibility of a disability leave; I
worked for almost a year in this condition. Because I was in so much pain, I
did not sleep well... and developed a sleep disorder which, in turn, developed
into fibromyalgia. Now I live with daily, constant pain, sometimes so severe
that I cannot walk or turn myself over in bed. Probably THE most frustrating
aspect of this illness is the blatant unwillingness of physicians to treat the
pain. I have heard statements like, "Pain medication doesn't help people
with fibromyalgia," and "We can't have people becoming addicts."
Yet these same physicians have no problem relieving the pain of cancer
patients. They will also prescribe a rainbow of other types of medications:
antidepressants (to keep one from committing suicide because one can no longer
bear the pain); medications to sleep; medications to add energy; medications to
reduce anxiety, etc. etc. etc. Everything except the most-needed and
most-logical pharmaceutical support: pain relief. There are countless studies
examining the difference between "physical dependency" and
"addiction." Many medications cause physical dependency; if a doctor
advises you not to stop taking the medication abruptly, it is due to the fact
that your body would go through severe withdrawal symptoms. Addiction, on the
other hand, involves psychological and behavioral factors focused on OBTAINING
(called "scoring" in street language). The most recent rheumatologist
I consulted doesn't "believe in" pain relief. He also told me I
should not take the Klonopin prescribed to stablize my sleep patterns because
it is "addictive." And yet, he prescribed another medication (I
researched it) which causes physical dependency. So it seems the terms are
bantered about to negate the medications the physician feels negative about and
to support the meds the physician feels comfortable about-- even though they
may have exactly the same impact in terms of dependency. I think it's
outrageous that patients are put in positions of feeling "criminal"
or beggardly for asking to be treated for pain. If anyone knows of groups
lobbying for a saner approach to pain mangement, please let me know. I'd like
our political voices to be heard. We deserve appropriate treatment and need to
find ways to strengthen respect for and rights of the patient. Fibromyalgia has
changed my entire life, affecting so many areas that it's impossible to view
them all in one sitting. I will say, however, that I received an unexpected
gift from my illness. I've been a writer all my life but found eventually that
I could no longer sit at a computer for long or grip a pen to write manually. I
was going slightly wacko from the lack of creative expression and decided to
give painting a try. Much to my surprise, it was much easier physically to
lightly hold a brush... and even more of a surprise to realize that I could
actually do it! I have a dozen or so canvases stockpiled now and am looking
forward to having my first showing (don't know when yet). Well, I wish all my
fellow fibromites good support-- personally and medically-- and send you all my
best wishes that we will find a way through and OUT of pain.
Shalom. |
|
| dawn - swimmiis@home.com |
| Comments - Hi my name is dawn I am 36
mother of one eight yr old girl. I am currently on ssi and am feeling a bit
dragged, I read through most of this site and find that I am doing what is on
this site excersiceing in water doing hot tub and hot baths and continuing with
my life cautously. I find that when I feel good I should rest more to reserve
my energy to deal with my family. I have a man in my life whom is having
difficulties in excepting me being so ill, as I was super mom and wife before,
if anyone is having a simular problem please feel free to email me I am curouse
to what others are doing to help thier spouses understand why they can't be
supermom or wife anymore. I have been active all my life over active at times
jumping out of planes and hiking tons of mountians. Right now he tries to help
but my patience with him are wearing so thin I am ready to say good bye, what
are others doing to combat this situation? My marriage will end in time I feel
just do to the fact of I used to do everything and now watching him stumble is
more stressfull then not having it the chore done. I would almost rather look
at a dirty bathroom then try to direct him as to how I like things done such as
don't use that broom for cat litter!!! I have a seperate one his question
why>? my answer forget it i will just do it myself , answer really is
because it is disgusting to use the same broom for cat litter as I do for my
childs room. But, alas guys just don't get it what the beeeep should I do any
one got an answer wide open here, hugs to all dawn |
|
| Keith and Barrie White -
tfnm@perth.net |
| Comments - In one way we are reticent to
tell you about something that may sound like we are just promoting a health
product. In case you don't know about this research, may we be permitted to
tell you of something that could benefit you and all of your friends and
family? The product is called Immunocal, and it is a nutritional product which
has patents for the boosting of the immune system as well as the treatment of
cancer (especially breast cancer & liver). As a natural health product, it
has also shown great benefit in helping to relieve the symptoms and provide
healing at the cellular level for those with fibromyalgia and related symptoms.
It has clinical studies. It is listed in the Physician's Desk Reference and in
the Pharmacists' Redbook. It has no side effects, and its only benefits are
positive. It can be used in conjunction with medicine or as a stand alone
therapy. There are already four books written about this product. This a
product that would benefit many. One can get the product directly from the
company, Immunotec Research Ltd. The product has been available for three
years, and I can tell you of the many miracles that have happened for people,
for example, who have been considered not treatable by conventional cancer
therapies (one recently in Montreal was given 15 days to live in March -- his
is a living miracle). |
|
| Dawn Thielen -
scorpion_11_1999@yahoo.com |
| Comments - I was diagnosed with FMS in
November of 99. I had been telling my previous doctor of the pain I had, my
inability to sleep, feeling fatiged, forgetting where I put things, and so on.
unfortuantly, this doctor that I was just complaining about nothing, he could
not find anything wrong. In May of 99, I changed doctors, when the pain got
much worse, I finally told my doctor and asked if he knew about FMS. He did :)
my diagnoses came back in early Nov. and had been confirmed by a rheumy. in May
of this year. I am currently out on disability. I found out in Sept. that I
have sleep apena also. I have CF, CP, FMS, Sever Sleep Disorder, Memory Lapses.
I am currently waiting to see an ENT, for the sleep apena. I hate to drive
anymore, being so fatiuged all the time makes me unable to focus on my driving.
My sister also has all this too, so we share alot of talks and support each
other when no one else cares to listen. Dawn |
|
| Deborah Cole -
deblcole@aol.com |
| Comments - I developed fibro after a bad
car accident thirty years ago. At the time I don't think it was even a word.
And I was mis-diagnosed as having all sorts of medical maladies and operated
repeatedly for conditions I did not in fact have. Thus, I now have a panoply of
medical problems I never should have had? Anyway, the final major diagnosis was
TMJ. I am not sure any longer if it wasn't just fibro all along.? My neck,
shoulder, and jaw muscles ache like crazy, and it prevents me from sleeping. I
am hoping someone will take the time to tell me what , if any, medications have
helped them withthe pain of fibro..(soma?) and with insomnia? I cannot take
anti-depressants as they don't help with the sleep-onset insomnia, and they
leave me even groggier and less able to function during the day. I thank anyone
who has any advise or info. Also, if there is a chat somewhere on the WWW,
would someone tell me where. I am brand new to computors and don't know how to
"get places". I see there is something about a "radio"
show? How do I "listen" to that? Thanks again, Debbie Cole
deblcole@aol.com |
|
| Terry - rtbailey@hsnp.com |
| Comments - i have had fibromyalgia for
four years. i have been in chronic pain. Meds wasn't working. it has been a
struggle to have to tolerate the [ain. I have fibro in about 95% of my body. My
doctor has just put my on neurontin and increasing it. after four years i think
we have found a med that is going to help. keep ur fingers cross. Just have
faith it will get better and one day there will be a cure. I was real active
and self-employed for years. woke up one morn with fibro. have been in the
hospital over and over. Just the last three months i have missed 5 weeks of
work being put on bedrest. the pain is so bad that sometimes i think i am not
going to make it. if there is anybody that would like to chat i will listen.
please contact me. may we have a painfree day. just take one day at a
time. |
|
| Louise Cole -
mydog2go@yahoo.com |
| Comments - I was in a car accident many
years ago and I was told I had TMJ. But I believe now that I had fibromyalgia
all along and that the myriad , mis-begoteen surgeries on my ehmoida sinus
cavities, calwel lucs, etc were all superfluous....Now, it simply means that in
addition I have constant sinus infections..! ANd I went through all the various
famous TMJ experts and their "splints"....braces....crowns...etc..And
the pain only got worse as the decades went by. But the criminal thing...the
true mal-practice was what was becoming to me...the person. I was turning into
a dependent, frightened, paniced borderline type of personality....Noone
believed that I hurt anymore and so my search for love became more and more
intense...more and more childlike....until I finally DID find a "pain
doctor" who swore he loved me and only me...and I became his patient. He
didn't know fibr from February !! ANd his interesst in helping my pain was
non-existent. But he was a brillian man. And what I got from him was this: I
had to find out what was wrong with me MYSELF. I had to study, read until my
eyes dropped out of my head...never give up or give in...and continue to
research until I found someone or somehing in an article somewhere that sounded
like me. WEll, that's a long story. I DID find many may articles about fibro.
And, I take clonipin, Trazadone for sleep, ritalin during the day, and I now am
back in college after thirty long years !! I am hoping to get my B.A.as a
licensed clinical mental health counselor for chronic pain people and the
attendent anxiety, depression and panic. Pleasee....if you wish..e-mail me:
deblcole@aol.com and whatever you do, don't give up.. What you have is realll
|
|
| Nancy Jolly -
mydog2go@yahoo.com |
| Comments - I was in an accident
many,many moons ago. But when I think about it I have always been in pain. I am
an artist and I suppose I felt that neck, shoulder and head pain was just part
of the luggage. But it became too much for me to work. In the last stages I
could barely move. I weighed 89 pounds. And my money was almost gone. But the
most crippling part was the attitude of the medical profession. I am single..a
woman..and now I was becomind "disabled"...There is no lower person
on the totem pole. So I was blithely dismissed as a malingerer...too tense...a
perfectionist...and told to simply "relax." I felt like I 'd
swallowed a magic mushroom and was suddenly condemned to living in the Land Of
Oz where all docotors were fools. Finally, I found a psychiatrist who did his
job PRORERLY. He went over every one of my symptoms, and he said :"Nancy,
you are very sick.You have very bad fibromyalgia as well as the accompanying
depression from all the years of suffering and trying to hide it.Your sleep
disorder has also played a large part. And I am going to help you get
well." That was a while ago. I am not quite one hundred percent yet..but I
am a functional, confident, state-appointed mental health rep , a productive
artist again, mother , lover, friend and human being. Thanks for listening. If
anyone wishes to e-mailme; mydog2go@yahoo.com |
|
| Deb - dax_n_utah@yahoo.com |
| Comments - I don't know exactly what it
is I have. Partly psychological, with emphasis on degenerative spinal disease,
and migraine headaches, which have plagued me since I was a child. I remember
bouncing my head off the wall for hours, because it felt better than the
motionless throbbing my swelling brain had to offer. I was sixteen before my
mother finally took me to a doctor, and he decided anthihisamines (sp) were to
be the choice of treatment. I found out a couple years later, my Grandmother
suffered horendously from this affliction, and it is hereditary, usually 2nd
generation. Gee, wasn't I the lucky one, not to mention being the middle child.
Back to the present though, I suffer from a wide range of malladies since my
back has decided to take a powder on me. I have herniated disks compromising
nerves in my c-spine and lower lumbar-sac. But for the past four years all
these professionals have been telling me the pain was all in my head. Of course
no x-rays were taken until recently to confirm any physical problems. Not a
manditory proceedure. Now I not only have the shooting pain down my arms,
shoulders, hands, legs, and hips, but by using a cane, my carpal tunel has been
aggitated, and my joints burn. I also feel so cold most of the time, I can
barely move. I have vertigo, and the medications they attempt to use make me so
groggy I fall asleep at stop lights (isn't this safe)but if I fail to make an
appointment, I will lose the only doctor who has taken my case in five years of
looking, being prodded, poked, and therapized. The orthopecic doctor's say
surgery will not impove my condition due to a low pain tollerance. When I asked
if he had ever had children, and of course his answer was "no", then
I asked how he could determine my pain tollerance level? I've had three, and
bounced up faster than most, even from c-sections. I hate being bound to my
home and chair, unable to complete the simplest of tasks, like planting my
spring tullips for the past three years, or making a small comforter for my new
grandchild. The mental health program I attend is puzzled by my depression,
even though they have now diagnosed me with BPII, PTSD, Personallity disorders
and a couple other things I was able to keep under my hat until my body decided
to reject its spiritual owner. What does one do? I have attempted and failed to
obtain my SSDI, after working for most of my life, the doctors don't seem to
care, or give credit to the problems plagueing me. It seems society in general
would rather see people like myself just fade away, and most do, under a
freeway, in a homeless shelter or nearby park. They wonder why these people are
there, well, maybe they better take a good long look at how our system
systematically dislodges individuals like this. I am soon to join these ranks,
and it scares the H&(( out of me. |
|
| Pat - mom0905@hotmail.com |
| Comments - I am a 50 year old woman who
has been diagnosed with Fibromyalgia in the last 9 months although my brother
who is a PA told me that I had it about 2 years ago. I also have reactive
hypogycemia and severe PMS. I am also starting menopause which doesn't help my
conditon. I have complained for years about my lower back and my shoulders
hurting and sometimes I would get these migraine headaches that would just put
me down. The headaches are the worst. I just can't function with that kind of
pain. I can deal with the low back and shoulder pain but not the headaches.
They are so severe that I can't see. I have gone to many doctors complaining. I
finally took it upon myself to see a neurologist who took x-rays and I saw a
surgeon. They did MRI's and Cat scans to find anything they could but
everything came back normal. The doctor suggested epidurals and nerve blocks
which helped some but not long enough. They were very expensive so I didn't
want to do that again. The epidural I took for the low back pain was in
sessions of three. I went three times for injections and after that it lasted
for a good year and that was the most relief I have had. The pain is back and
all my doctor does now is give me injections of lidocain and cortosone. They
help a little bit. Not a lot. Anyhow, I have come to the conclusion that I must
help myself and that is by sharing with folks like you all and by trying
therapies that work. I do recommend deep muscle massages and moist heat. I take
Robaxin, Ultram, Zoloft, Soma and Ambien for sleep. I have started taking
supplements to help myself get off some of this medication. I heard of a
multivitamin supplement that has worked for someone I know who has fibro. The
name of the supplement is Rainbow Light Complete Nutritional System. I have
only been on it a week so I can't recommend it till I have been on it about 2
months. It is a little expensive. It is $23.95 for 90 tablets. They are big and
green. It has a lot of the nutrients that I hear we are lacking in so I know it
can't hurt. Thanks for listening to me and I would like feed back if anyone
would like to share with me their experiences with me. |
|
| Sarah Elizabeth - sparko1@bellsouth.net | | Comments - Greetings:This is my very first post so please bear with me if I seem to ramble. I have had Fibromyalgia before the disease had a name!!First, I was told I had growing pains,then Pre-menstrual Snycope...then I was in an automobile accident,turning over three times end over end.This is when the pain really took over my body!I was sixteen.Soon after the accident,I began having problems putting one foot ahead of the other,falling,inability to run or walk up/down a flight of stairs without falling.Back pain,numbness,tingling,pin-pricking sensations,shoulder/neck pain and migraine headaches.Doctors told Mother that it was in my "head" ...and depression.After I married at age 17,the "head" problem progressed.Now,the doctors diagnosed this as "non-acceptance of becoming a woman/mother.I divorced and the diagnosis changed to "I needed a man!" I re-married then at age 24,I had a hysterectomy.What should have become the "best years of my life" became a living nightmare!My day consisted of awakening with stiffness in the fingers (would not bend).My children ran very warm/hot water in the sink to soak my hands to enable me in preparing breakfast/get them off to school.I could not sleep or go into deep sleep.I began having diverse reactions to pain meds.My head felt heavy.My neck could not hold up the head without much difficulty.I wore a brace support.Sleeping on the dining table with the Sears Catalog/Telephone directory on my lower back was the only relief I could find to ease the pain for any length of time.I wore a back brace/much exercise.Following doctor's orders,I became addictive to alcohol for pain/realized this was not the answer and ceased abusing alcohol.Pain was a lesser evil!Bucks Traction (head/legs),Muscle relaxants,Therapy,whirlpool baths and hospital stays for 8-10 wks each visit gave temporary relief.During this time,my diagnoses changed to a "rare muscle disease" having tendonitis,myositis,fibroitis,arthralgia,and TMJ(Temporal/Mandible/Jaw Dysfunction).Eventually,I was diagnosed with Fibromyalgia.Doctors had empathy with "rare mucle disease".Fibromyalgia was a different story!This diagnosis reverted back to "head diagnosis".My wealthy parents sought to have me committed to a mental institution with nurses around the clock!Thank God for the "rare muscle disease" physician,this did NOT happen.What worked for me is:I learned to ACCEPT that my lot in life was a painful one.I learned the art of suffering in relatively silence.Few people knew the "real" me.I spent many months/years periodically in/out of hospitals/home with "back problems" in bed with inability to walk/sit.Walkers/wheelchair and epidural blocks for the "back problem"which gave relief for six months. MOST people can understand back pain/arthritis to some degree and render aid/empathy.Over the years,I learned to love to hate doctors.I put my head into medical books,became a nurse.Pre-occupation with others illnesses/problems and activity,along with pretending I was "feeling fine" carried a lot of weight with others and..finding an understanding,generous doctor willing to give me pain meds was a plus.I learned to half the meds. tablet,making the prescription last longer and enduring half the pain.This way,I could cope with life.Depression..oh,yes,I do know the meaning of "praying to die" but with pain,I became more dependent upon my higher power (God).I became more compassionate to others pain.I learned to look at life in a different way.I learned to laugh EVEN when I didn't feel like it.I became an inspiration to patients/others.In other words,I learned to USE my afflictions for my advantage instead of the disease USING me.Do I hurt??You bet!If I live and breathe,there is pain (legs/back/hips/hands,feet/neck/shoulders/cluster migraines/muscles/tendons. I take Ultram for pain and Trazadone for sleep deprivation.Trazodone has done more for me than words can say.I can endure anything if I can have decent sleep.My hypoglycemia in early years became.. full blown diabetes.Amazingly,insulin stopped my severe leg /back pain..go figure.For years,my fasting blood sugar was normal (70/120).Doctors did not believe I had a sugar problem EVEN tho my mother was diabetic.Then..a post sugar test was done AFTER I ate and was found to be in the 500 range.I am saying all off this to say:find out what works for you.Staying active,exercise,pain meds and a POSITIVE ATTITUDE (I was POSITIVE that I had pain) and being careful in NOT sharing my feelings with non-fibro persons other than doctors/nurses has carried me a long way.This way I do not have to endure the seemingly non-caring attitudes of healthy ones. I have had Fibromyalgia for 46 years and life IS worth living..once one learns the rules of having the disease...patience,courage and faith in a higher power to carry you through the pain and agony. I made it..you can,too! And to all, I know your pain..I feel your pain..I am so very sorry that you must endure this pain.I understand.Remember..you are NOT crazy!I rather thank God for giving me the understanding and compassion throug my afflictions.In my time,I believe that DNA testing will show doctors the "where and what for" about the disease and we will be able to have a vaccine to CURE it. I am living for that day! God bless!
|
|
| Terry Luckydaisey - rtbailey@hsnp.com | | Comments - if somebody had told me six yrs ago i would come down with fibro. i would told them they were lying. also i would asked them what fibro was and how do u get it. i was very active. self-employed, lots of outside activities, enjoying life. got up one day with this terrrible pain in my shoulder and chest area. ended up in the er several times and they didn't know why i was having this. had several attacks like this and then it stopped. about 8 months later i woke up one morning and i had fibro in my legs, chest, shoulder. i wasn't sleeping at nite. i started having anxiety attacks. the pain was so bad. i started going to the doctor he told me i had fibro. i said what. what is it and how did i get it. the doctor stated he wasn't sure. didn;t think i needed any pain meds. I had fibro so bad and it was a chronic pain. i sold my businesses because i couldn't do it any more. stayed home for 6 months. fibro got worse and worse. ended up in the hospital two times. had to go to work so i could afford my meds. well i have tried everything there is to try to control fibro from dieting, exerices, herbal meds, meds, physical therapy. nothing has worked. now it has been five yrs and i still haven't gotten any better. i am on meds for anxiety, sleep disorder, stomach problems, depressions, muscles relaxers, pain, . i sleep abour five hrs a nite. thank goodness. that is a improvement. don't have to many anxiety attacks. fibro has gotten worse by the day. i am now seeing a massage therapisty that specialists in fibro. the first massage treatment done wonders. i felt great. the second was wonderful but got up the next day in so much pain. fibro is a day to day basics. u have to be very strong and not give up. u take control of it and not let it take control of u. it is very hard. i work a full time job and maintain a house hold. i just pray alots for a cure. now we are in 2001 i have decided that i would do everything possible to live a better life and get fibro under control. i go to work alots of days in so much pain i can't hardly stand it. i keep going. the pain gets so bad that i get sick, bruises on my body and torn skin from it. my lymph nodes are so bad that the doctor says i could lose my breast or arm. let me tell u i fight to the very end. don't let nobody tell u to throw in the towel. hopefully one day there will be a cure. stay active regardless of the pain. find somebody that is supportive and will listen. i know there isn't very much i can tell u right now beside this. hope we all will have painfree days. any time u want to chat just message me or email me. i will be happy to be there for u. life is worth it. thanks for ur time. |
|
| Rosa - cc9kitties@msn.com | | Comments - Short of rewriting everything you have published on these pages, I could not have said anything concerning FMS/CFS any better. I have read, researched,and listened to hundreds of articles and opinions and have found your website to be the most thorough and accurate info on FMS/CFS ever. In fact, I agree with every word 100% and found it to be very easily understood without a bunch of medical jargon and put downs by the medical care professionals.
You are the only person (besides myself) that thinks (in my case, I know)I have been afflicted with FMS/CFS all my life. The couple of times I dared to suggest it to the doctors, it was poo-fooed as "impossible."
I was diagnosed with FMS/CFS in 1996 at 52 yrs old, after years of being told it was just "nerves & depression." I can recall not even wanting to date as a teenager because of the overwhelming fatigue and weakness. In fact, it was my Mom who picked out and liked the only boy I ever dated and made me date him. Of course I married him at 17 yrs old and spent 18 years trying to make him happy and pretending to be "normal" draggin through each day, forcing myself to keep a clean house and be the "good wife." But you cannot pretend "liveliness" and "energy", so time and time again, he found women who were full of life. We finally divorced, and 3 years later, I was pushed into another marriage to a really good man, but I still really didn't have the energy to have a relationship. I guess I am too weak to even fight having other people run my life.
I had three children by my first husband and my pregnancies were horrible. I planned and wanted all three but I looked and felt like "death" warmed over the entire 9 months. My sister was pregnant with me at the same time for 2 of them, and she absolutely "glowed", which made me feel only worse.
I told you of those things to show you why I "know" I have had FMS/CFS all my life. My story for the present time... I managed to raise my family, keep house, and work outside the home for 28 years before being forced to leave my job that I loved due to the final "breakdown" of my body and mind.
The last four years I worked, I literally crawled into work and back home in tears everyday. The physical pain was unbearable and due to the "mental" fog, I could not even use my brain, which was an absolute "must" for my position as a "purchasing agent" for a large manufacturing plant. The muscles and ligaments started tearing in my left leg just from the stress of walking on them.
I knew it was just a matter of time before my bosses would realize I could no longer perform my job duties and would have to terminate me; and I could not stand the thought of ever being "fired" for lack of performance. After many prayers and tears, while still on crutches from the last tearing of the leg muscles, I turned in my notice and resigned.
Since the doctors insisted there was nothing wrong with me but "stress & nerves", I assumed I needed to find a job with less stress. The depression that followed leaving my job was traumatic; and even worse, I did not get any better...only worse and worse...so finding another job was out of the question.
Over the next two years, my health went into a downward spiral to the point of being unable to crawl out of bed except when absolutely necessary. My family thought it was all in my head. My husband knew it wasn't, but he did not know what to do with me and just mostly ignored me and starting staying at church all the time, leaving me feeling "deserted" and thinking no one cared enough to find help for me. Of course the doctors still insisted there was nothing wrong.
Finally, a lady that my stepmom knew told her about something called "Fibromyalgia" and that it sounded like that was what was wrong with me. None of us had ever heard of it, but my daughter made me an appointment with the FMS specialist that the lady knew about. It was an hour's drive away, which seemed like a trip from the East Coast to the Pacific.
After this wonderful lady doctor diagnosed me with FMS/CFS, I spent one year traveling there three (3) times a week for therapy for it and coping stragedies and getting medications regulated. After this extensive therapy (medication, hot tubs, heated pools, massages, physt..(emotions can't spell it), biofeedback, vitamin and herb therapy, education, coping skills, light exercise, breathing techniques) this doctor got together with my internist with all my records he needed to take over the treatment of my FMS/CFS. He does a wonderful job so I feel very fortunate to have found 2 understanding doctors to help me after all the years of poor medical treatment.
As you know, these diseases changes your life and life styled totally and you can feel better, but there is no cure. I have had to give up so much including playing the piano regularly at my church, but at least I cope with it. I go when my body allows me to go. Even with that I know I will pay for going the next day. My treatment consists of so much of what you wrote about. It seems like my days are spent doing whatever it takes to "feel better."
I am on multiple prescription drugs for various FMS ailments..migraines..IBS..narcolepsy (sleep disorder)..GERDS..hiatal hernia..dry eye syndrome..pain..skin allergies..drug allergies..stomach cramps..low blood pressure..muscle spasms.
A lot of doctors won't prescribe pain medication saying it leads to addiction. I have not found this to be true. I would not be able to function without them. They allow me to do some of the things I had gotten to where I could not do.
Maybe I missed it..(mental fog).. but the only thing I didn't see mentioned was some problems that FMS can lead to. I am not overweight, do not eat very well, but I have had to have open joint surgery on both jaws (TMJ related..disk tissue destroyed and torn).., double back surgery (herniated disk & protruding vertabrae with no explainable reason for it.., high cholestrol with 2 blocked arteries..50%.. mild heart attack.
Yes I know some doctors would say these are not related, but the "experts" told me that they are.
I would rather believe them than the doctors who don't bother to education themselves about these chronic illnesses. My internist was not "up" on FMS/CFS but has taken the time to learn all about it and even now attends seminars on them.
As far as family and friends go, your friends go away when you can't go and do like you used to. Friends as well as family say they understand but yet you can see it on their faces and hear it in their little remarks that they really think it is "in your head", especially when you have to turn them down on attending a "get together" or you have to cancel at the last minute.
Now this is what really makes me want to "SOUND OFF"... Susie Q calls and says.. "Do you think you will feel like baking a couple of cakes for the "bake sale" next week?".. or / "When are you going to fix us one of those delicious suppers you used to fix?"..or / "I'm off next Tuesday, will you drive me to "a town an hour away"...(I) don't like to drive in the traffic and I have a doctor's appointment (or whatever)?"..
I won't say what I would like to say to her, but I won't. What you can't do with or for your family and friends just adds to the "guilt" that we have to carry because we are not able anymore.
Well this is long and I have gotten it off my chest and will close. I cried when I read that you are afflicted with this as such a young age. Although I believe I have always had it, I feel for you because I know what is ahead for you if you don't find a good, caring doctor if you don't have one, and it didn't sound as if you do. You certainly have an excellent knowledge about FMS/CFS and I wish everyone could find your website. It is the best I have ever been to.
Thank you for sharing your expertise and experiences with everyone. I appreciate it very much. I do know from personal experience FMS/CFS folks can benefit from your treatment page if they will try it.
Just sign me,
Praying for a Cure
|
|
| Heidi - hlcleveland@snet.net | | Comments - I am just at the beginning of my hell with my body and my mind. Just a couple weeks ago I went to a new doctor`s office ( a all women`s group) and the doctor there actually listened to me.. She didnt tell me to lose weight and it will go away. She didnt ignore me when I told her that I have excruciating pains in my hands, wrists, ankles, and feet that I could only describe as arthritic feeling. I let it all hang out. I told her everything. She left the room for a moment, came back with a piece of paper and told me that she was not an expert at this but she was going to check to see if I had the points on my body that were one sign of fibromyalgia. Well I passed the test... I nearly jumped off the exam table when she hit some of them.
Now I am on my journey of discovery. My good good friend has FM/CFS and she has been helping me an awful lot with coping with this. See what is really throwing me for a loop is I am 32 years old, I was diagnosed with diabetes just 2 years ago and then i was diagnosed with bronchial asthma a year ago. Then my body just decided it didnt want to cooperate anymore. I work a full time job, i have 2 children, a husband, a house and everything that comes with it. Thank God my husband is so understanding. He rubs the soreness, he doesnt care if i lay in bed for hours at a time. But I feel so helpless and hopeless sometimes.
You see, I had a physician that i had seen for almost 12 yrs basically ignore all my ailments. When i would come in with a new one, she said it was depression from the diabetes, the pain in my leg and back was my weight, she totally ignored my comment of the arthritic pain. Finally one day she just said that I was just looking for an illness. That the only thing wrong with me was that I hated my job and that I didnt want to work anymore, that is why i used the excuse of being so tired all the time. She said I was exaggerating and that I needed to just go out and find another job and i would be fine. I started to cry. With anger and with hurt. I never ever went back there again.
Then my psychiatrist that I have known for a very long time told me that i did not have CF or FM and I didnt know what I was talking about.
Hey Doc! You ever think to wonder why you have my on Neurontin cause of my pain at night to sleep, Dexedrine during the day to keep me awake, and a slew of other anti depressants and mood stabilizers so that those thoughts of just killing myself would just go away...
There I have let it out. I am glad I have finally found someone that believed in me. Now I have an appointment for a sleep lab, more blood tests, and since the MRI`s and X-rays showed nothing I will be referred to a rhemotologist (spelling?)
Thanks for letting me babble.. Sometimes we need to do it to keep ourselves sane. |
|
| sandy - moochies3@efortress.com | | Comments - My onset of Fibro began in the military about 1989 after a few traumas and knee surgery. I have TMG (had surgery), I had fatty tumors, had surgery to remove them in the right abdomen. I have mitro valve prolapse, as well.
I had a husband who didn't care, was selfish. I finally separated from him. He made me miserable on a daily basis. I didn't sleep, eat, or care because of my pain and spasms, headaches, and overall depression about my deteriorating health. I was an athlete, very active and loved life. I was now missing it. As the years went on I stayed in the military. I had to carry large bags for deployments and it became harder and harder for me to do so. To make matters worse, I went through with the divorce, I had to learn to live on less causing me stress and unhappiness due to a failed marriage. My pain and stiffness progressed. I didn't know what was happening to me. In 1994, I underwent a C1-C3 fusion because my neck was unstable. One day after exercising I became partially paralyzed and couldn't use my right arm or leg. I was diagnosed as having an unstable spine and I underwent the fusion a couple months after the incident. I was dating my present husband. Before this surgery I had headaches, spasms and sleep problems. After the surgery in Aug 1994, I experienced restless legs, more serious sleep disorder and constant, nagging, chronic pain all over and "shooters" pain that shot through my body like lightening hiting it, or somewhat like a hot knife. My headaches were serious. I became depressed and felt alone. My friends quit calling, my husband stuck by me we are still together. I left the military because of the stress and requirements I couldn't keep up with daily. I was diagnosed with Fibro in 1997 by a Rheumatologist after seeing my doctor. I thought I was nuts, I could barely walk because I also had bursitis in both hips and my right kneww (the bad one). I couldn't even walk a block without having shooters and I would cry. I am still fighting the VA because they don't think my illness is "military connected". I worked several jobs after the military but they were all too stressful for me and eventually I medically resigned from the U.S. Attorney's office, that is when I hit rock bottom. My depression almost had me ready to give up on life. I didn't think I wanted to be around anymore, I was now a burden to my husband, we now have to live carefully because I lost 1/2 of our income, I can't get any relief or assistance from Social Security because they recently turned me down about 4 days ago. The VA will not accept my claim or illness and I have been appealing them for 5 years now. I see a counselor for my depression and it helps, but deep down I still feel guilty for the way we have to live. I don't have any insurance for my medical needs other than Tricare (military) and they don't accept all my px's. I am well educated as well as versed on Fibromyalgia. I have IBS, sleep disorders and all the other illnesses I have mentioned I try to keep a positive attitude but each time I hope for relief, I am turned down. I am alone other than my husband. Nobody wants to listen.
I know there are other Fibromytes that are going through this same problem - trying to be recognized as what we are now - ill. But we have to stick together. I would like to join a group so I don't feel alone anymore. If anyone out there would like to join me in my fight and yours - just by having someone out there to talk to, please let me know. I am tired of crying and feeling helpless. I want to get better. Sandy
|
|
| Red - pscott@bright.net | | Comments - I have been dx with FM for 13 yrs. I was having alot of emotional and school problems with my 10 yr.old daughter.The same year I was involved in an auto wreck.I have soreness in my neck,all down my back,arms,hips...in general I just feel sore all over.I also have TMJ.I have had to adopt my granddaughter.We've had her since birth,she has glucomma so we've doctored her alot too.Everyone in my family kept telling me it was my place to adopt her (I dearly love her),but no one seemed to ever think what about the effects of raising another child would have on me.Family always thinks of you the way you were and not the way you are now.They mean well,but often are blinded that you actually have real pain and are unable to do the things you would like to do. My prayer life has helped me more than I can express with mere words.God always come through when you need Him the most.Hang on and believe better days are ahead. |
|
| Red - pscott@bright.net | | Comments - I have been dx with FM for 13 yrs. I was having alot of emotional and school problems with my 10 yr.old daughter.The same year I was involved in an auto wreck.I have soreness in my neck,all down my back,arms,hips...in general I just feel sore all over.I also have TMJ.I have had to adopt my granddaughter.We've had her since birth,she has glucomma so we've doctored her alot too.Everyone in my family kept telling me it was my place to adopt her (I dearly love her),but no one seemed to ever think what about the effects of raising another child would have on me.Family always thinks of you the way you were and not the way you are now.They mean well,but often are blinded that you actually have real pain and are unable to do the things you would like to do. My prayer life has helped me more than I can express with mere words.God always come through when you need Him the most.Hang on and believe better days are ahead. |
|
| mrvacation - mrvacation@aol.com | | Comments - Here is an alternative approach to looking at chronic pain which you may find beneficial, or at least interesting. It has helped me, some friends, and I hear it has helped a lot of people. Check out MindBodyMedicine.com. |
|
| Michelle Solvang - Sparkydude@prodigy.net | | Comments - I am 38 years old and live in Southern California. I have had symptoms of Fibromyalgia for the past 10 years, at least. It took several years for the final diagnosis. Most of my doctors thought I was nut's. What a relief to finally put a name to this life changing disorder. I am married with one child. My daughter is 8 years old this month. I was in the Banking industry for 14 years. Currently I am on Social Security and still have a difficult time accepting that my life has drasticly changed. I am always hopeful that there may be a cure some day for all of us. My prayers are with you all, and may you find comfort, peace and happiness once again.
Michelle |
|
| Marilyn - serenity5000@msn.com | | Comments - The muscle are in a battle and as the years have passed some symptoms are getting worse. I developed fibromyalgia after much emotional stress and illness.My emotions made a big difference with my pain level.I had very poor medical care at one time and had a lot more pain than I had to suffer. I fought for myself and found a doctor who believes my pain is real and is will ing to treat it. I find that muscle relaxers and antidepressants help a great deal. At one time I was denied medication and then later when it was offered I was afraid of it. In time I realized I had to do something to help myself cope and i gave in. At this time I still suffer and yes have many flareups. I have found ways to cope and one way is to fight for the care you deserve. |
|
| Maria - madeo@san.rr.com | | Comments - Around January of 1991 I began to feel like I was coming down with a bad flu. My headache was the most incredibly painful headache I had ever had in my life. It felt like the top of my head was going to blow off along with my eyes. My body ached and my throat burned like it was on fire. I made an appointment to see my doctor to get an antibiotic for my sore throat. The doctor did give me an antibiotic. By the end of the course of antibiotics, he prescribed another round of antibiotics because my throat had not yet stopped hurting. My body continued to ache and I felt exhausted. I did not improve. In fact, I felt worse. My doctor prescribed yet another, different, more powerful course of antibiotics. By the end of the first week I stopped taking this medication. I knew these antibiotics were doing nothing to make me well.
My symptoms worsened. Not only did I have the most excruciating headache of my life, but also felt an extreme deep fatigue with painful backaches. I couldn’t remain standing for very long, since I would begin to tremble and feel out of breath. My hair was falling out every day (I had lost about 25% of my hair). I noticed I had a hard time concentrating and it was becoming more difficult to do simple planning and organizing. This loss of mental acuity is known as the “fibro fog”. I experienced tingling and numbness in my arms, legs, and face. I felt very sensitive to certain foods (hypoglycemic symptoms). My eyes and mouth burned and I could see darkened veins on my tonsils where I felt most of the burning sensation in my throat. I noticed painful nodes all over my body. I would wake up at night due to the pain from these nodules. They were swollen constantly. I felt nauseated and had no appetite. I also felt a tightening of my throat. I felt like I could barely swallow like someone was squeezing my neck. I barely had enough energy to go to work--not working was not a financial option at the time-- and take care of my three young children.
I began a long series of visits to doctors and specialists, along with many different types of testing. I was tested for everything—lupus, encephalitis, multiple sclerosis, HIV, lymphoma, CMV, mononucleosis, Lyme disease, etc. This process took about three months. Finally I was sent to an oncologist who performed a biopsy on my nodes and told me that I was suffering from what he believed to be a post-viral syndrome called Fibromyalgia/Chronic Fatigue. He told me that this illness needed to take its course and that I would probably never be the same again.
With this news, I began to read books on how to boost my immune system and restore my health naturally. I went to holistic doctors and practitioners. I tried countless supplements recommended by these people, Centrum, GNC, Nature Made, Kirkland, Nutrition Warehouse, Sav-on, Schiff, True Nature, Trader Darwin’s, Nature’s Way, Naturade, Herbal Life, and many, many more. My medicine cabinets had become a storage for these useless products since they did not really help. I only improved a bit, but never felt back to health as I was before my illness.
After trying many different types of natural supplements for four years, I finally resorted to seeing a new doctor through a new insurance plan. I did not tell him about my illness. I only described my symptoms to him: Fatigue, mental confusion, sore nodules all over my body, headaches, sore throats, back aches, etc. He quickly told me that I had the classic symptoms for Fibromyalgia/Chronic Fatigue. He took time to explain to me that I needed a non-steroidal anti-inflamatory drug along with a non-addictive pain blocker to help with my symptoms. He prescribed these medications for me and within two weeks I got some relief, especially the fibro fog symptoms. I never really felt rested and I still was in pain, but it felt easier to deal with it all.
After being on these medications for five years I was introduced to USANA Health Sciences nutritional supplements in October of 2000. I was very skeptical since I had already tried so many products. I was almost convinced that nothing would ever really work, but then I thought it was worth a try—I had nothing to lose. I experienced a detoxification phase during the first ten days on USANA. My body ached more than usual and I had a bad headache, along with diarrhea. I kept reminding myself that it was worth the additional discomfort for the possibility of feeling better later on. I was well informed that it is not uncommon to go through this detox stage and sometimes people who experience the more severe detox symptoms end up having the best results with USANA. I kept visualizing all the bad toxins being released from my body whenever I would feel uncomfortable, but I never wanted to give up.
After 10 days on USANA I woke up one morning and felt great. Again, I wondered how long this “good episode” would last. To my amazement I have been symptom-free of all my Fibromyalgia/Chronic Fatigue symptoms for the first time in ten years. I had forgotten what I felt like before I got sick, but I have been enjoying my renewed energy and health once again. I have even been able to stop taking my prescription allergy medication. But since I’ve been on USANA, my formerly severe allergies have disappeared. I am currently going off of my fibromyalgia prescription medications.
USANA has changed my life and I thank God for bringing these wonderful, amazing products into my life. |
|
| Deb - dax_n_utah@yahoo.com | | Comments - I don't know for sure what it is I suffer from, but
highly suspect it is Fibromyalgia which may stem from
CFS in the beginning.
I take many medications, some of which you have
listed, and others of more potency. My body has
chosen to reject many of the anxiety medications in
respect to cognancy. Also, to complicate matters I
have spinal degenerative disease with compromised
nerves in my cervical and lower lumbar. But the CFS
was there for many years before this developed. The
occasions were to frequent that I would become groggy
and, or, fall asleep while performing some dangerous
task at my job.
It got worse as I became older; the aches, pains and
migraine headaches worsened with frequency.
It was just within the last year that I was able to
obtain a referral to a rheumatologist, which I will
see in the upcoming week. They seem to be quite
backlogged. This has taken five years of poking and
prodding, and psychologists statements of condemnation
and persecution. As of this time, I still have not
received cognative mental health care as I am
subjected to the state mental health guidlines.
God has been a figure not prevelent in my life for a
very long time. My conclusions are that he either
doesn't exist or communications have broken down to
the point I'm not worthy for him to tend to. Maybe
he's just too busy for someone like me.
Now I've accepted that it is up to me and only me to
get the help needed for my family as well as myself.
This is not very promising considering the dilema.
Thanks for letting me vent.
|
|
| Anne Hillebrand - annehillebrand@juno.com | | Comments - I am getting COMPLETE relief from severe Fibromyalgia by taking three prescription medications and making a simple lifestyle change. They are not pain medications or knock-out drugs for sleep. My web page tells exactly what I am doing. It is also helpful if you don't know for sure if you have Fibromyalgia. Please read the whole web site. I am not selling anything and don't want anything. Just to get the word out about what works.
Sincere Thanks,
Anne Hillebrand
Orlando, FL
|
|
| Jess - jkirby@dolphin.upenn.edu | | Comments - I am almost 23, was diagnosed with fibro about 2 years ago. It's been an experience I'd rather not have to have, but at the same time I am stronger, so it's a double edged thing, I guess. I have a great doctor in Philadelphia, so if anyone needs a rheumy in Philly, let me know, I love my doctor, he's a very good rheumy. Currently on neurontin and amitriptyline, with tylenol w/codeine as painkiller. Ultram doesn't work any more. My knees started to kill, and so it turns out to be a combo of regular arthritis and displaced patella (otherwise known as major front knee pain). Not worth operating, so I control the knees with braces and lidocaine patches (which are awesome! I use them for anything that aches, including migraines). I am a vet student, have a busy life, and have learned to work around my limitations with only a few blips. my family is incredibly supportive, and my friends are understanding (I think it helps that pretty much all of them have major science backgrounds). I have signed up at hte school disability office, and that's been the best thing- it's an extra measure of flexibility for me, since I have the power of the school behind me when I need things to be modified. REcently have been doing major mood swings, but overall I'm doing very well. Just got a summer job and my boss was understanding. I read about everyone's struggles and I realize that I am incredibly lucky in my timing (becoming ill when the illness is finally being taken seriously), in my doctors (my doctor when I was an undergrad diagnosed me two weeks after I got sick), my family, friends, and in that everyone that I have talked to about waht is wrong with me has been incredibly understanding and willing to work with my limitations. |
|
| Linda - Dustilace@aol.com | | Comments - I can relate to everything in this area....and I am relieved to see it isn't in my head, or just walk more or relax more or whatever. :-) I do want to relay how I feel about anyone with these things who say "all you need to do it this....."
Remember you well meaning folks....not everyone reacts the same and we need to be tolerant of each other and just suggest what has helped for yourself.....don't expect others to find it helps them as much...and if it does..well good deal!!!
I've met people who told me they had FM for years and because they jogged or took vitamins....and on and on....now they don't have it anymore.......ok......we all know that they didn't have it!!!! When was the last time we all went for a nice easy jog???!!!! Ha
I am interested in getting a network of FM patients, like myself, who need income and can put in some various hours. . .if you are interested about working from your home and help out with the bills, I can share what a few of us are doing at the present time to help out.I needed an income and quickly, so some of us got together and started a service in the community for renters......if it works here, it can work anywhere. Please feel free to ask me about it, but mostly I wanted to encourage each of us to be loving to each other and supportive....we can't get too much of that. I'm glad to find this site and I wish you all a decent rest tonight. |
|
| L. - poosepoose@hotmail.com | | Comments - I have read all these stories and found that the same thing I see over and over again is the lack of compassion from doctors to our pain. I am in desparate need of a doctor who is not afraid to treat my pain with pain meds if necessary. Does anyone know of any doctors in Eastern Massachusetts that is not afraid to do so? I've gone to specialists and a pain clinic and chiropractors and acupuncture, been on nsaids, muscle relaxers, every anti depressant you can think of and nothing has helped. I am at my wit's end and I can't take this pain. |
|
| Sarah - momreel@aol.com | | Comments - One of my worse experiences with Fibromyalgia was irritable bowel syndrome.I took Sundown's Glucosamine Complex with vitamin C plus Zinc, Mangansee, Copper, and Alfalfa. I took this supplement for at least 6 weeks 6 tablets a day the irritable bowel syndrome stopped and has never returned. I hope this helps others who are suffering with this aspect of Fibromyalgia. I still have all the other symptoms of Fibro but at least I got rid of one of them. |
|
| Marilyn - serenity5000@msn.com | | Comments - I have had fibromyalgia for about 10 years. It has been a great battle dealing with the muscle spasms and burning pain anywhere and everywhere.I did not get the help I needed for a very long time. Doctors wouldn't listen and said I was depressed and to deal with that and I would feel better. One doctor told me to relax and I would have less pain. I was told I did not have fibromyalgia and that I should be ashamed of myself for not working. I was told by one doctor that he would not treat me,because what I needed was a psychiatrist. Needless to say this and more caused me great suffering. I don't know how I survived that time.Couldn't get anyone to help me. I knew there had to be help out there,but it took a long time before I could fight and get the help. When the pain is bad and your emotions are too, it is hard to keep fighting for yourself. I had wonderful friends and they got me through with a lot of understanding and encouragement. I finally found a doctor that was willing to help and listened to me too. Yes she said I was depressed,but she didn't make me feel ashamed. She was willing to give me a muscle relaxant and antidepressants and it has made a big difference.I also can relax knowing that if i am in bad shape she will do what she can.I wish I could tell everyone with chronic pain that they should never give up fighting for the help you deserve. If it is at a time when you can't fight for yourself then find someone that can help you.I don't even know if i would be here if it wasn't for people picking me up and guiding me in the right direction. We are never alone and people close to you can help in some way.My life is different now. Yes I still live with back pain, muscle pain, foot pain and much more,but I know help is there and now I have it.I wish everyone luck in their fight to take care of themselves.Find the strength within yourself to keep going and find the help you need. |
|
| deb - med_venture_2000@yahoo.com | | Comments - I do not suffer from Fybromyalgia, but I know others who do and I know how debilitating it can be. Immunocal, an all-natural whey protein has helped some people. Please e-mail me for info. on this wonderful product. Also, e-mail for a free box to try - no catch - no obligation, no phone calls, no anything - I just want to help. |
|
| Sandy - Moochies3@efortress.com | | Comments - Since I last wrote to you all I have found a Nutritionist that has put me back on track for better health the natural way. I have been under her care for almost three (3) months and I have never felt better. I still have the nausea and headaches, hip pain and restless legs, etc but the symptoms are almost non-existent. By the time I reach "our" goal, I should be doing great! I already have noticed that my allergies are gone, my morning stiffness has lessened and my pain is "tolerable". But, best of all I have energy, I sleep and I am only taking one prescription now at night. I don't need the pain medications anymore. It's amazing. All I do is cut the BAD things for me out of my diet as much as possible and eat what my body reacts good to. I no longer eat much sugar (honey in place of), low sodium, raw vegetables and fruit and I can have fatty acids (butter in place of margarine which was bad for me). I also tried Herbalife, Usana and other things, but if you are as desperate as me, see a Nutritionist and give it a shot. I feel like I am getting my life back. I started out my life eating right and was very athletic. I still have limitations from injuries that have left me permanently disabled, but I do not feel as limited as I did months ago. I also pray to the Lord God as much as possible to help my husband and me each and every day to get through our lives until I can go back to school or work - which hopefully should be soon. I am letting God tell me what he wants me to do. I no longer want to die. I want to live. Our lives our so enriched now. I stopped seeing a counselor because it made me feel worse about myself, that told me I was ready to venture out on my own, I beat the depression and have accepted my limitations. Anyone who reads this please respond to me. I know there are different aspects to this illness, but it doesn't have to take you out. Do not give up. Life is attainable again. Trust me, I was ready to take mine. |
|
| Karlotta - karlotta@fredsplace.zzn.com | | Comments - I have been diagnosed with Fibromyalgia for 2 1/2 years however, I have had symptoms and pain for over 10 years. When I would go to a doctor he/she would just tell me that it was a virus, cold, I needed to lose weight or it was in my head. I ended up in the hospital with what the doctors thought was a heart attack Nov 99 and that was the beginning of finding out what was really wrong. I have symptoms of lupus however, the blood test are negative thank the Lord. Come to find out after seeing 5 different doctors from Internal specialist and Rhumatolosist (sp?) I have Fibro. I am doing better as long as I stay active and take my medicine. I have been able to cut way back on Narcotic meds and now mostly take sleeping meds to help keep it undercontrol. I have days or even weeks that are really bad but, as long as I keep a positive attitude and stay physically active Fibro is managable for me. I do find that I catch viruses more and seem to get sick with different medical problems easier. That is something I am trying to work on. Good luck to everyone. |
|
| Betty - kwadi28@hotmail.com | | Comments - It seems like it has taken forever to finally find out what was causing all my problems. My regular dr gave up and sent me to the arthritis dr. He sent me to a dermatologist. Event though all 3 drs were in the same group, they did not work as a team. I was having the same lab test done by the arthritis dr and the dermatologist within a few days of each other. This went on for almost a year. Finally, I decided to go to the University of California, Los Angeles Medical Center (young doctors - updated training. My regular dr and the arthritis dr said to go for it - they were stumped. The dermatologist was not happy with my decision and told me "Don't let anyone tell you that you have fibromylgia, because you don't!" Went to UCLAMC one month ago, saw arthritis dr there. He spent 3 hours with me going over medical history (I took copies of all my medical records with me), reading my daily journal I had been keeping, talking with my husband and setting up a lab test that my previous drs had not heard of. Had my second appointment 2 weeks ago and he said that I have frbromylgia. When I told him what the dermatologist said, he said "He should stick to his own field!" I'm not happy about having fm but at least I know what I have. I know I'm not going crazy. My husband and sons have said I had "dingus battus" (ding bat) disease for years. Now I know that it really brain fog. Sleeping is my worst problem. I average 3-4 hours per night. I have to get up at 5 am to get my husband off to work (By the way, he has Multiple Sclorisis - in remission) and my younger son off to school. By the time they leave, I'm exhausted. Some days I force myself to stay up and try to do housework. It seems to take me forever to get the simplest things done. Then I get upset at myself because I can't get things done in the normal time. I forget to little things that people ask me to do. Other days, I go back to bed and try to sleep. It seems like I sleep best from 9 am to 11 am. One day this week, I feel asleep at 10 am and didn't wake up until almost 3pm. Right now I feel guilty when that happens and feel bad when I tell my husband what I do some days. I don't want him to think I'm just lazy. He said don't worry about it. He works for the VA hospital in LA and has lots of contacts to check out fibromylgia sypmtoms and what to expect. He even has a co-worker with lupus who send me very informative phamplets on fm. I applied for SSDI about 3 years ago, but at that time, they denied it. There was no real diagnois they could use. I appealed just before I found out I have fm and have not heard from them as yet. I have contacted my case worker and informed him of the diagnois. He said not to give up and he will help as much as he can. Well, I guess thats about all for now. Thanks for giving me a place to vent. |
|
| dianna - wdelanuez@yahoo.com | | Comments - I am 33 years old and was diagnosed with fibro 2 years ago. it is the pits. I manage a tuxedo store in florida and just finished prom season. It has never been this bad before. i am in so much pain i just want to cry. I am so tired i can't even sleep and when I do fall asleep I wake up in an hour because of pain. The doctor has put me on elavl and that is a joke it is not working and he is so busy it takes 2 months to get an appointment. I am going to see a new doctor tommorrow and hopefully I can get some relief. The one pill that i have take that helps the most is called oxycontent 20 mg and then i found out that it is highly addicting so i won't take that any more. Thank you for listening it helps everyone in my house thinks i am lazy cause i am tired all the time, no one understands |
|
| Anita - ajadah@excite.com | | Comments - My dear fellow sufferers,
I too have Fibromyalgia and I also can not work. I am very fortunate to have been put on SSI after a year of struggle with paperwork etc. I have had Fibromyalgie for most of my life but I was diagnosed about 10 years ago by my physcian who was on the ball and finally found what was troubling me. thank God he read the Medical Journals. the thing is he didn't give up or brush me off. He was a man who knew his patient and knew that I was not someone who complains about things lightly. The most amazing thing about this Doctor is that he refered me to a Good reumatoligist. Now the syoty takes a turn. Both of these wonderful men retired and left the area. And now the bad doctor stories begin. And many of you know the rest of the story so I will leave it and fast forward to 3 years ago and my new wonderful therapist and pchychiatrist. You see by this time my depression had become severe. They got me on the road recovery and SSi. By recovery I don't mean cure. We know that is not not an alternative. By recovery I mean Dealing with life as a chronic pain individual. I have learned much and keep up with the latest findings trough the Fibromyalgia Network. Most of all I have had to develop an attitude ajustment. I had to lose the fellings of guil from not working, of letting my family down because I couldn't do the things I needed to do, and the many other guilty feelings I had because of my nature as a caregiver and doer. You see I always felt I shoud take care of others and not be taken care of by others. If you want to learn more of my stories and activitys I have a journal on this site in the Chronic pain Dept. Please visit me there. I want to help you as I have been helped. God Love You- Anita |
|
| peggy - pasumrs@aol.com | | Comments - i have the same problem as the rest of these stories but no meds seem to work i feel like i am going crazy -losing my self-worth, i feel abandoned by my family i feel so alone even when there are people around--all i get is are you okay-how do you feel all the time from my mom and sisters and brother- my husband treats me like i'm no longer good for anything -my kids have found other things to keep them busy so nobody even knows i'm there unless i don't feel good enough to get up and do laundry and cook them something to eat or clean -my husbands always working so he doesn't have to be around me and we have been married 20 years--i guess for better or worse- and just leave your wife alone must be a part of life for alot of women with this problem--sometimes my husbands says it's all in your head-there's nothing wrong with you--but i have been legally disabled for 3 years now--it took me almost 10 years to get someone to listen to me about how much pain i am in all the time-no sleep for 2-3 weeks at a time and then i just crash when i am so tired from no sleep i just want to crawl up in a ball and die sometimes-sometimes i feel like i am being punished for something that i have done in my life to hurt like this-but now i just sit and cry more and more each day -i have had the headache for 4 years now--and on top of that i get migraines what a great life-just hurt from top to bottom-then i hear people say there is someone out here worse off than you--and you know -ireally feel so sad for someone that hurts worse than i do-- |
|
| Deb Mac - debmac52@hotmail.com | | Comments - I am a 48-yr-old female, work part-time as a social worker (my work trial period for SSD), have been on disability for the past eight years for clinical depression and panic disorder. I know I had fibro years before it was diagnosed, but was diagnosed almost three years ago. At first my symptoms were episodic such as hand pain, musculoskeletal pain in my neck, cervical and lumbar back pain, hands, hip pain, knee pain, deep shoulder pain and elbows. Also, muscle weakness which would be in different parts of the body with no pattern. Dry eyes have been a big problem, IBS, restless leg syndrome, sensitivity to noise, perfumes, and mood swings. I'm very sensitive to hot temperatures (sweat like a pig), and high humidity. As time went on my episodes became longer and more severe. I have days when my legs do not want to work and the thought of being in a wheel chair is very frightening. Currently, my symptoms are a prevailing lifestyle with only a few minutes here and there without some kind of pain. I had just fought a profound period of several years with deep depression, panic disorder, and PTSD. I fought through 5 years of college to get my BA degree, before I absolutely knew I had fibro and had become moderately debilitating most of the time and severely debilitating some of the time. I've had a great christian doctor who does all he can to help me. I decided to go to work so that I could at least eat decently and pay for living expenses. The years of SSD income were most difficult to live through, especially without a minimal support system. My family estranged themselves from me during my severe depressions and panic disorder days. Living with fibro and having family treat me like I have a plague is very draining. I just recently moved away and have tried so hard to keep my 25 hr. a week job, but am now at the point where I'm so tired of pushing myself through the pain and muscle weakness. For me, not working means living in extreme poverty. I would not survive it if I didn't have a personal relationship with Jesus Christ. I do not understand how anyone can survive fibro without leaning on God for help. Anyway, I'm in the survival mode right now. I have chronic bronchitis and sinusitis also. My boss is angry because I've missed 2 days due to sickness. I've never told them I have fibro, but now it's getting to the place where I don't think I have a choice but to tell them. I need to start going to a pain management clinic and counseling. Life with fibro is tough, my friends. Knowing this life "is but a vapour that appeareth for a little while and then vanisheth away" KJV, is the only things that keeps me going. Surrendering this disease to God (sometimes every day)keeps me sane. Sorry this was so long...needed to vent. Anyone... please feel free to e-me. deb mac |
|
| - | | Comments - AFTER YEARS AND YEARS only oXY-cONTIN hELPED ME FROM THE DISPAIR OF AGONIZING pain! i TRIED EVERYTHING YOU MENTIONED! wE NEED MORE SUPPORT OF sTRONG PAIN MEDDICATIONS WHEN nothing ELSE WORKS...BE SUPPORTIVE FOR oXY-cONTIN AND ITS RELATIVE MEDS...tHANK YOU...ouT OF THE DARKNESS AFTER 30 YEARS IN TO THE lIGHT..... |
|
| Andrew - Andrew_mcl@hotmail.com | | Comments - I am what some would call an alternative healer and I have been helping many people including recently a lady with fibromyalgia with good success. If you would like to read about what others have found please have a look here. http://communities.msn.com/FutureHealthnz
|
|
| Amber Fontaine - ambers85546@yahoo.com | | Comments - I am 23 years old and always been healthy and active in sports and outdoor stuff. About a yr ago i lifted a tv and tore my pectoral muscle. Since then ive had alot of pain in my shoulderblades neck tension headaches and pain and tightness in my jaw and i could ramble on and on about all of my other pains! I had it out with my doctor on the phone about a month ago she phoned me and told me it was all in my head she says when someone gets injured they tend to fall into a depression and was more concerned of my emotional being!! I went off by teling her she had no right to make that accuazation to me! Unless she walks one day in my shoes and feels what i feel everyday then she cant tell me i am not hurt!! She refuses to give me pain medicine that works her comment is that shes afraid ill get hooked on the meds. They will never understand how us FMS sufferers feel until they feel it themselves! So today i went in to see her showing her every piece of information on fms i could find! Can u believe the doc thanked me for bringing it to her attention as she is almost positive that is what i am suffering with!!
I have gone through a yr. of trying to convince these docs. that my pain is real! NOw i dont know what to do my doctor says she believes that FMS is not a disability! That not to give up i am almost 100% sure that i cannot work. I have a 3 yr old girl and as demanding as she is i can bearly make the days with her and my pain! I dont think i will ever be able to work how can i convince this doctor of this can anyone help????? |
|
| Kathy - wellersg@yahoo.com | | Comments - Please look at Dr. Sarno's Healing Back Pain...this book specifically addresses FMS and is amazing...very similar to the website that someone else had listed. It has helped me a ton. |
|
| Jessica Farley - mugwort@eudoramail.com | | Comments - I am 20 years old and have had Fibromyalgia since I was about 11 or so. It varies from mildly painful or stiff to debilitating. I feel like I have a whole slew of unexplained problems including fibromyalgia, migraines, and chronic nightmares (just about every night!). I like many people have been from doctor to doctor, gone to chiropractors, nutritionists, rheumatologists, acupuncture, etc. I really am looking for someone who can look at these thing holistically because the more I read the more they all seem related. Everything feels very nebulous right now and I don't want my body to just be a guinea pig for perscription meds. Right now the nightmares are bothering me the most. I see that many others have similar related problems. I also take to heart the positive attitudes expressed by many. Thank you for sharing your experiences.
Peace & Be well. |
|
| - | | Comments - The Fibromyalgia army grows larger every day. Our weapons are few and our only strength is HOPE in tomorrows and what they may bring. Our only tools are KNOWLEDGE and BELIEF in ourselves. These tools hold the key to our future. Knowledge has brought mankind from the Dark Ages into the 21st century, and it is the belief in ourselves that will carry our army to VICTORY over this battle with Fibromyalgia.
Over the past year I have searched endless websites and gathered as much knowledge as I could in order to understand this syndrome. I have compiled these notes and articles in a booklet in PDF format, which I would like to share with all of you who are struggling with this condition called Fibromyalgia. If it helps to make your struggle a little easier or your life more bearable, then my efforts were not in vain. I wish you all as healthy and as happy a life as this syndrome will allow. May the Good Lord hold you always in the palm of His hand.
Me & My Shadow, Fibromyalgia The Irritable Everything Syndrome |
|
| Audrey - aeortega@msn.com | | Comments - I was diagnosed with fibromyalgia over a year ago (2000), I spoke with my Dr. about what I was feeling since 1999.
I was always so tired, I called it fatigue because it was so overwhelming. I also hurt all over sometimes so bad I could hardly walk. I also told her about how I could not sleep even when I tried over the counter sleep aids. I was also very confused at times and could not remember even the day or date. She first treated me for Menopause but the symptoms continued. Finally after several months of this she finally diagnosed me with Fibromyalgia. After the diagnosis she started me on a small dose of amitriptylene and ibuprofin...needless to say, they didn't work.
I decided to go see a pain specialist who gave me a series of shots. I hurt worse after and the relief was temporary because after 3 days of pain from the shots I had temporary relief in the areas injected...usually a week or less. I quit seeing the specialist because I felt that I'd been caused more pain with his treatment than I'd had without the injections.
My Dr. began giving me medications for the various symptoms I was beginning to have...like TMJ, IBS, Reactive Hypoglycemia, and various others. She finally gave up on me and told me she could do no more to help me.
I searched the internet on Fibromyalgia sites for a new Dr. and came upon a Chiropractor that had a wonderful website that caused me to believe that he understood the disease. I made an appt. with him and was enlightened by his knowledge of the disease. He also referred me to a pain specialist that would work with him on my medication. This Chiropractic Dr. has a different insight to the disease than most. He told me that the cause of FM was Stress or Post traumatic stress disorder (PTSD), so he instructed me not to exercise until the FM and the stress were calmed in my system. The Pain Specialist put me on a multitude of medication...I currently take:
Amitriptyline (50 mg.) for sleep, Neurontin (600 mg. 3x day) for RLS, Paxil (20 mg.) for depression, Diazepam (5 mg.) for muscle relaxation, Zanaflex (2 mg.)also for sleep, alprazplam (.25 mg.) also for sleep Nexium (20 mg.) for acid reflux. It's a job remembering to take them all but I am feeling better. I also see a counselor and a psychologist to help me deal not only with the pain but the cause which in my case was severe stress. I was in a very abusive marriage and when I left I began to feel the pain and the anxiety of the many years lost to the abuse.
My Chiropractor was so good however that he has moved on to teach other Medical Professionals the way to help FM patients. His partner now does my therapy and is also very informed and takes time with me so as not to cause more pain from working on the muscular areas. He works on the brainstem with heat and mild electric massage, because the belief here is that the brain is sending the messages for pain and therefore it is the brain that needs to be trained to discontnue sending pain signals to the rest of the body. The therapy is slow because I have many flares but after therapy I just get home take a hot shower and go to bed. I usually wake up feeling "normal", sometimes for the day and sometimes for part of the day but every moment of relief that I can muster will make me happy.
Please find a specialist in FM and related disorders because the treatments and the knowledge will be rewarding at the point of remission which can be reached with a positive attitude and the proper medication. I'm looking forward to a normal life again at some point. With the treatment that I am receiving, I belive it to be possible. You keep on believing too! |
|
| dottie zohe - dottieleezohe@msn.com | | Comments - I am @ college now unable to send direct emails until I get home. I do not have fibro., I have chronic pain from a botched spinal surgery that turned into 9 more spinal surgeries both going in from the front &as well as the back, and spending 3 months in the ICU. To top it off I am an RN, and I have tried all the tricyclics, and every medication cocktail out there, until all surgeons and anesthesia gave up placing me on the only med that helps me to get through another day without constant shart, and burning pain- Morphine. It is not fun to be on an addictive drug that each time I pick up at the pharmacy I get a snide look as if to say " yea we know you do not really have a problem, and only take this to get high", as i look totally normal, but no one knows what I feel every moment I am awake, and even when I try to slep. High is the last thing I get, but I have been taking it for 4 years now, and yes I am physically addicted, with a stamp of inoperable on my head, and all other treatments have failed so this is where I will stay with yearly increases of med, as I gain higher tolerances. I have a titanium rod that is 3 feet long with 8 screws as well, and some days I cannot stand or bend over even though I take well over a thousand milligrams per day, as well as immediate release Morphine for the breakthrough pain which is always breaking through. I thankfully have a husband who is supportive & knows there may come a day that I cannot work any longer. I am finishing another degree right now,and taking a total of 36 credits! So it goes without saying that I do not become sleepy from this legalized junk. I get real down on myself alot of days because I wish I did not have to take this, but I have tried at least 3 times to go without it, and I am not able to even dress or move freely. I would like to hear from others out there who are as well on high doses of controlled drugs, and are you working? I was approved for lifetime disability, but chose not to take it, as I am too young in my mind to stop working & sit home. I will stop only when I can no longer move. I look forward to anyone to chat with who can relate to a condition that I do not tell alot of people about, obviously due to the meds, which carry such a stigma.
Write when ever you can and Thanks,
Dottie Zohe |
|
| Eartha - eartha_etal@prodigy.net | | Comments - I too have suffered with fibromyalgia for about 12 years now. I cannot hold my arms above my shoulder even to change a lightbulb. Washing my hair is painful. I also have MCS. I have tried physical therapy, which only worsens my symptoms.
I cannot do much house cleaning. Some days, even typing on the computer is difficult. I like using Taradol injections, but my family doctor says it's hard on my kidneys, so she scribes me Lortab. I really don't like using addictive drugs, so I tend to not take pain relievers and end up suffering.
What and how should I help myself?
|
|
| Olga - oliverao60@aol.com | | Comments - Hi!
Have just finished reading the posts on this wonderful site. Most of you have had or are having the same experience as me. For a year and a half, I was treated for osteoarthritis. Would tell my Doc, I had severe neck pain, sometimes, I felt as if my neck were going to drop to the floor! Sleep problems, depression (was put on Zoloft. Finally, I went on the NET and found a wonderful arthritis center right in my neighborhood, was referred to an incredible Rheumatologist who confirmed I had FMS after giving me the Points Test. Today, I am on BETRAX, Zoloft and Flexaril for the muscle spasms which attack my left knee and neck. By the way, my pain is on my left side. Sometimes, the numb feeling which hits me, feels as if I am having a heart attack. Has anyone else experienced the numbness? This board is a lifesaver. Thank you so much for your advice and above all, for the wonderful "GROUP HUG" feeling it brings.
((((Soft Angel Hugs)))
Olga :) |
|
| Teresa N. - theorginalmonkey@hotmail.com | | Comments - When I was 13, I began experiencing abdomenal problems and bowel issues. When they continued, I was referred to a rhemotologist, which I causually ignored. From the age of 14-18 my health declined and I was diagnosed with :
1)severe TMJ which practically inhibits anything I do
2) IBS with hemoriods and irriated/streached intestines
3) Depression
4) aneixty and panic attacks
5) Magraines and tension headaches
6) Serious congitive problems which now forbid me to drive
7) Muscle problems up the yahoo(like not being able to keep my ribs in place, they always are dislocated)
8) Chronic Pain Syndrome
9) Sleeping disorder
10) seizures
and more fibromylgia symptoms than I care to explain.
I just turned 19 on April 19, and I have been forced to quite college and it takes my everything to get out of bed in the morning. I'm falling fast and frankly I have no idea what's going to happen. I guess time will tell.
|
|
| Freda Reed - camry002000 | | Comments - Hi, I'm new to this kind of thing so I'll do the best I can to let you all know a little about me. I'm 40 years old,2 children,a great husband who have been very understanding of my illness.I was diagnoised with fibro 8 years ago.It is a awlful pain to live with.Some days it's hard for me to get out of the bed.Let lone doing housework or anything else.I have had 11 major surgeries since 1999.So yes I do know what others are going through everyday.I've also got osteo. & rheuemotid,acid reflux ,taking several meds. daily.If anyone would like to talk please get back to me. Thanks for the other comments about other suffers with pain.It's good to know that I'm not alone. freda!!! |
|
| Penny Cooper - pennycooper@sbcglobal.net | | Comments - For the past seven years I have been doing my best to stay in the employment status. I have tried going back to school. I can learn anything that is not my problem. My problem is I will feel great for three to six months and be going great until fatigue sets in. Then all of a sudden I feel helpless and can’t keep my eyes open. I have tried taking gensing, B-12, stress vitamins only to become more fatigued.
Over time I have become allergic to milk products and anything with citric acid. If I take vit |
|
