Discussion in 'Fibromyalgia Main Forum' started by kinkypinky23, May 31, 2003.
I would like to know how long it took u all to get a diagnoses of cfs/fm.
It took me about 5 or 6 years and my mom about 20 !
I had just had back surgery and about two years later I was online and read up on FMS. I thought I could have it. I asked my chiro and my orthopedic surgeon and they both said no without any kind of testing. I later
went to get my allergies checked by an allergist
and rheumy. I asked him to confirm or rule out
FMS. I don't recall him running any blood tests or
scans, but he felt that I had it. I had been previously
tested for Lupus and RA, etc, by my chiro.
my diagnosis was thirty days shy of three years. like many of us who suffer with this dd the medical community finds it easier to put us in a psychological category rather than doing some leg work and putting a name to it.
once diagnosed i was never so happy to be told, "yes, you are sick and this is what your suffering from."
I tried for 25 years to find out why I had such a long list of symptoms that would all hit at the same time, but my doctors looked at each symptom separately and implied that I was silly for thinking there was a connection. One said I needed counseling. I finally found a doc who mentioned fibromyalgia around 1995, I think.
and i did believe that at one point but i personally believe that my depression is due to illness and not the other way around.
I have been diagnosed with GAD, panic disorder, hypochondria, phobia, all things which can be linked with CFS yet my doctor is reluctant to make a diagnoses of CFS although near enough every other cause has been ruled out.
I am currently on treatment for depression and nothing has been found to be effective.
It took me over 10 years from when I first mentioned the fatigue to my doctor before I was finally dx'd, but not by him. Looking back, my symptoms had begun even before that, perhaps as long as 22 years ago. I was dx'd a year and a half ago with CFS, FMS, and NMH.
I now also see that I had gradually made small adaptations in my life in response to my symptoms. I began using carbon checks when I kept forgetting to write down my checks in my checkbook register. I began using the computer to keep my checkbook records when I could no longer balance my checkbook, even with a calculator.
At school (I was a teacher) I began using a stool shortly after I started teaching full-time, in 1990. Later I even pulled a student's chair (unused) up to prop my feet on.
When my symptoms flared in 1997 and were blamed on depression which did not respond to antidepressants, I quit taking schoolwork home with me except at report card time. I also used Saturdays as days for resting about the same time. I put off any work I needed to do around the house until Sundays.
I could go on and on with sympptoms that went unrecognized, including six week sinus infections which always brought funny looks from my doctor, month long pneumonia which caused me to be sent walking all over the hospital for a chest x-ray, feeling like I would never make it to wherever I was going because I was so exhausted.
You get the picture. I hope your diagnosis will not take anywhere as long as mine did. A lot more is known about these syndromes now than 20 years ago.
From the time I started to realize something was not right. I had the symptoms longer than that.
My body started to fall apart when I was 15(and I was in perfect top shape,very athletic)it started with hypermoblity,my knees/ankles have been dislocating ever since(about 50+ times each).I have always been in pain as long as I can remember.It started getting worse when I was in my 30's(factory work is a killer on your back).I finally got diagnosed in 1987 and right after that I was diagnosed with OA and deg. disc disease.I just won my SSD/SSI case after a 6 yr. battle but I have been leaglly disables since I was 40.
For far too long I was diagnosed as "having nothing medically wrong with me"... ie. it's all in your head!!!
The catalogue of pains and problems started in early years - appendix like pains around 9!! I've been on sleeping meds from around the age of 16, but had years prior with so little sleep but lived with it.
They started saying maybe CFS early 1990's, FMS first mentioned in 1996, and then finally diagnosed formally in1998.
Currently have a GP that wants to treat the depression, but seems to be oblivious to the other factors. Usual phrase is "and what do you normally do when you get this bad" - my these doctors are so intuitive!!!
Sorry to rant, but some days I feel more bitter than others - today's obviously one of them.
[This Message was Edited on 06/01/2003]
My jaw specialist first suspected FM a year ago and suggested I talk to my family doc about it. In the interem, my family doc referred me to a collegue, who made the FM diagnosis. My doc says FM is a wastebasket diagnosis. I will be seeing an immunologist in July.
From my first symptoms I was diagnosed within 4 months. Although, I am still not sure the diagnosis is correct. Not completely anyway. I think I want to get a second opinion about MS. Or it could be both. 4 months seems like a LONG time. I feel for those of you who it took longer!
[This Message was Edited on 06/01/2003]
I think docs are getting better at dx FM, since it's been more widely publicized (around the early to mid 1990's). I had "arthralgia", "nonseropositive rhematoid arthritis" (what a mouthfull), and suspected lupus for about 7 years. One doc asked me if I'd been exposed to syphillis (positive ANA leading to suspected lupus dx). The only thing that makes me angry about all this is the conclusion of the doc who pinned the FM diagnosis on me is "at least it isn't disabling"!!!
I think I have had this dd since my teens. Was told I had cfs by a holistic dr. yrs. ago. Improved while being treated
by him. Could not keep up with tx. too expensive.
Have been tested for Lyme at least 20 times in the past 10 yrs.. All negative. My GP of 1 1/2 yr. gave me a diagnosis of fms 1 yr. ago. Sent me to a rhuemy who confirms dx..
GP set up cardiac stress test,contrasting cat scan of head and neck and nerve conduction test. All were negative for MS,carpal tunnel and heart disease. Do have mitral valve prolapse. Cardiologist confirmed fms and was very supportive due to the fact that he too has it. Had to cut back his practice 10 yrs. ago because of pain in his arms.
He has had fairly good success with a very restricted diet,yoga and excersise.
Just getting that acknowledgement from the medical world has
been emotionally uplifting.
This website has been a godsend. There are times I have sat and cried reading the posts on here. I am thankful to be more well than many here. I also find a release when I see my own struggles with pain and fatigue and fog in someone elses post.
never figured it out. I had had symptoms for fifteen years, and finally had to give up work, not even knowing what was wrong. I spent two years going through libraries till I finally read about FM. I got referred to a rheumy for a diagnosis, but he suggested I have a colonoscopy(my mother had had bowel cancer). At the bottom of his report he wrote 'at worst may have some form of FM'. That was around 1995. All I can say is I'm so greatful that there is the internet.
My physician asked me this same question on my last visit and I told him my onset of symptoms was in 1988 and I wasn't diagnosed until 2000. I don't know where I was when he asked me that because that just isn't true. My onset of symptoms was in 1998 and I was diagnosed in 2000. I guess it was just a fibro fog moment.
Well i was diagnosed by my Gp as soon as i started with my symptoms,but it took about 3-4 years for a firm diagnosis.
Everytime i went to A&E sreaming in agony i told them i had fibro,they were great.
I read my medical notes about a month ago & boy was interesting.
I read when i was dx & quite few othere fatcs i feel i sghould have been told about,after all im the one with these DD"s.
Hope this helps
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