BellaOnline Forums Health and Fitness Fibromyalgia & Chronic Fatigue Syndrome How did you come to your diagnosis?

I'll add my story, since I'm new here. I believe my FM began after a severe emotional trauma. Eight years ago I began having extreme pain in my forearms and legs. It felt like I'd played tennis 24 hrs a days ofr 3 days straight. But the pain didn't go away. I saw a rheumatologist who tried a steroid regimen and a lot of X-rays and other tests. No diagnosis. After months of continued pain, I saw another rheumy who suspected FM, but I was not "sensitive" enough to the tender point test (I really think I had a high tolerance, and I'd been suppressing for so long that I didn't come up off the table). Anyway he tried a few more drugs and I still didn't improve. I started to think I was crazy. A lady at work who has two close friends with FM told me she thought that's what I had. I found out about a support group that met near my home so I went to one of their meetings and was blown away. They were all telling my story. So I made an appt with my regular doctor and told him we needed to talk about FM. After a short time, he made the diagnosis. I've tried exercise programs, a whole raft of meds, a pain clinic (way too many drugs for me) and I've come to rely on a low dosage anti-depressant, a beta-blocker to prevent migraine headaches, some pain relievers and muscle relaxers when things get really bad, (plus injections when it gets mega-bad), massages, heat packs and a consistent dedication to being positive (some days that's not gonna happen) and trying to keep moving. I've learned from my large support group that there are so many different stories and different ways of dealing with FM. My heart aches for those who can't work and struggle to survive. I'm fortunate in that regard. But I do lament the parts of my life that I've lost because of this. I try to concentrate on what makes me happy and keeping positive. God bless you all.

we need a "pain" forum which would cover every body, don't you think?

Just wanted to add my story. I believe I have had FMS all of my life. One of my first memories is of my dad rubbing my "achey" legs. If my feet got too cold my leggs from the ankle to the mid thigh would ache so bad. I don't remember my sleep being disturbed except I slept alot and I slept hard. In my 20's I had all the tests for RA, Lupus, Bakers Cysts, etc. was diagnosed with Chondromalacia Patella, ya fancy name for sore knees <img src="/images/graemlins/frown.gif" alt="" /> In my 30's it was more tests for RA, Lupus, MS, Osteoarthritis, Cortisone shots in my hips and feet, being diagnosed with Diabetes and one divorce. I kept asking doctors that if I hurt this bad now how would I feel in another 10 years... only it kept being 10 years later and I still hurt! I got so (a)asperin no longer helped at all (b) I just kept going through the pain (c)other things were happening so "just pain" was the least of my worries - Pancreitis, Appendicitis, Rotator Cuff Surgery, loss of a job yadda yadda. In my 40's I remarried, moved back to Phoenix and almost died from a autoimmune response that shut down my lungs. I spent a week in ICU on a ventalator and eventually got better but spent 5 months on prednisone. The only time in my life I did not hurt was after the months on prednisone. So sad, then BC and LC for my husband. The last 3 years have been interesting to say the least. Anyhow I had blamed my pain on arthritis for years since nothing else ever showed up but after I had knee surgery for a torn miniscus and the doctor said no arthritis and after I had seen a podistrist for fallen arches and she said no arthritis suddenly a lightbulb went off in my head and I said Wait a Minute! If I dont have Arthritis Why do I hurt so Much!!!!! After much research I wrote my gp a letter since it was easier to lay it all out and guess what! A diagnosis of FMS. Im 49 and percoset is my best friend. I consider myself lucky as I still have my job and am dealing the best I can but I do get angry every once in a while that it took 30 years to get a diagnosis. Thanks for letting me vent. ps have sleep study on July 19th. Cant wait to see what that shows.

When I was 16 (1991) I started getting reccurent strep throat. By the time I was 17, I had 12 doctor visits over the ENT problems in the month of Feb. alone.

I was told I was suffering from aids. Then I was told I had 'chronic mono'. When I was 18 I went to a specialist and was told I had CFIDS.

Since then it's been 15 years of nothing but one battle after another. I have yet to find a doctor who actually believes this to be a medically sound diagnosis, and frankly, I'm tired of 'explaining' to them how I ended up with it.

I live my life medication free and have since I was 19. Previously, I was on two inhalors, a nasal steriod spray, steriod pill, daily antibiotic, daily antihistamine and three other pills to combat side effects from what I was already taking.

It made me completely useless.

Now, I do really well by monitoring my diet, exercise and 'exhertion' and just avoid doctors as much as possible.

My mother, who was also diagnosed with Fibro/CFIDS was given an additional diagnosis of Hashimoto's- which her new doctor says is the ONLY thing wrong with her, as (according to the Doctor) there is no such thing as CFIDS. She is on synthroid, as well as a passel of other medication. She, however, believes her doctor and doesn't think there is anything wrong with her. Even though she comes home from work (at 3 in the afternoon!) and goes to bed most days.

Sounds like nothing to you too right? LOL

----
Tamara, with the 'impossible. it doesn't exist!' illness.

I'm really not sure if I have FMS or CFS or what. All I know is, for years, I have ALWAYS felt tired, no matter how much sleep I got at night. I never felt like my sleep was productive, because I would sometimes wake up more tired than when I went to bed. I always have muscle aches. I have IBS and TMJ - both disorders that can be triggered by FMS. I've been to several doctors time and time again for bloodwork and complete physicals, only to have them tell me that nothing is wrong, or to tell me that I am dehydrated or something.

I try to take good care of myself. I try to get enough sleep at night (although I fail at this more than I succeed). I try to eat right. I exercise regularly. Yet, I feel like I'm in a mental fog much of the time. I'm sluggish. I'm sore. More and more, I'm starting to suspect that I might have either of these problems.

Right now, I'm stationed in Germany with my husband. I get terrible medical care. The American clinic on base has terrible doctors and all they want to do is prescribe medication for things that you THINK you might have, without actually testing you for it or trying to find the cause of your problems. So I'm reluctant to go in for more testing until we move back to the States. But at the same time, I'm really tired of going on like this. What kinds of specialists do I need to go and see? I'm going to at least try to get a referral or something.

My 11 yr old was was dianosed with Fibro this past week. He has had spinal pain for a few years but I was told it was because of scoliosis. Went to a chiropractor for that, never made the pain go away completely but did straighten his back some. In August he started a new school which triggered severe asthma attacks until his doctor removed him from school.Then it was strep(mid sept) then scarlette fever(early Oct). About the time the scarlette fever went away Joe started telling me his body hurt all over and he had no energy. After about 2 weeks of this his Dr put him in a children Hospital and had him tested for Lupus and JRA
since both were in the family, both were negative. Then the rhumatologist did some test poke various point and said it was Fibro. Now what do I do?