I was diagnosed years ago with CFS. Then I changed doctors and he didn't "see" any signs that he recognized at CFS. I have been through one thing or the other until about 6 months ago when the pain clinic doc gave me the FM diagnosis. So...whether I did or did not have the CFS is up in the air. I personally I have had the FM for a very long time and just was misdiagnosed for years.

I was diagnosed with both at the same time.The cfs fatigue and others symptons have eased a lot. mainly I stick to fibro board as it is more active marilyn

since people with fibro don't sleep well and are in pain, inst the cfs a symptom and not a separate diagnosis

ouch

I have had FM since the fall of 1998 for sure...CFS later in 2004...I literally "WOKE UP" with it after a surgery...from that day on I will have {everyday} periods of fatigue like someone has just drugged me...and No choice but to sleep...this past year my man bought me a machine for one thing...did nothing for that...BUT has minimized my fatigue...so the machine STAYS!!!

Hi Quattera my journey to diagnosis was filled with twists and turns and I can't say I know where to begin. I became sick after they put a biopsy clip made partially from nickel in my breast. I am and always have been highly allergic to nickel. When I realized five years later that this could be causing my problems I had it removed and became sicker. I was never diagnosed with CFS but I had it alright. Approximately fifty times a day I would have waves of dibilitating fatigue wash over me. Finally I was not functional anymore and six months after the clip was removed I continued to deteriorate. I can't tell you how many doctors I went to but I finally found a profession of endocrinology and she diagnosed me with Secondary Adrenal Insufficiency caused due to an infiltration disease caused by the nickel. She started me on hydrocortisone and until yesterday I was taking them. Determined not to give up I ran into a women on the CFS discussion group who told me to about biotoxin disease. Being a curious person I read the books Mold Warriors and Desperation Medicine and after I told her I have a biotoxin disease. I told her I had all the symptoms right down to using my elbow to shut off lights because of getting shocked all the time. So she recommended I get an appointment with Susan Kolb, MD and I did. I took the five minute visual contrast sensitivity test and it came back positive and she started treating me for biotoxin disease. I believe the nickel altered the chemistry in my body and caused fungi to grow in my breast. Dr. Kolb treats many women who have had mold on their implants that was detected after removal so I knew I had the right doctor. Soon I will post about my journey to health as I am getting better. The FM was because I had pain on my right side only same side as the biopsy. Dr. Kolb diagnosed me with FM from biotoxin disease.

Ouch I have cfs and insomnia but I have flareups where I could sleep all day and all night.there is pain involved with both if that helps marilyn

Great replies. Thanks all.

Basket: I have heard variations on your story frequently. My personal feeling is that because the criteria for a FM dx is based more on quatifiable things, that diagnosis is made more frequently. I know that in my area, smaller and more rural, that is true. I find that I try to talk to people that I run into about both because many times women have the symptoms of CFS and because they don't fit into the FM mold, they are ignored.

Dallas: You and I sound similar in our diagnostic history. My infectious disease guy told me verbally that I had FM too, but then said he was sticking to the CFS dx only so that SSD wouldn't become confused...LOL.

Callmeouch: Love the name. And yes CFS is a separate diagnosis, although the two diseases tend to overlap, as they do also with myofacial pain syndrome sometimes.

msboioni: I had a friend whose CFS started right after she was in a car wreck and had surgery. They list trauma of any sort as being a trigger. There was a great article about that, I will try to find it.

SharonH: What a long and harrowing path you have had to take. Thank goodness you were able to find docs that responded intelligently to your circumstances. As a chemist, the nickel/mold/illness thing does not shock me. I am too fogged to remember exactly why, but it doesn't. I am so glad you found help. Now the nosey question, if you had that biopsy marker in, does that mean you are ok? (I assume that was for b-cancer?)

Yes Quattera the biopsy came back benign. I am high risk for breast cancer being the types of woman they recommend get a prophylactic bilateral mastectomy, an ooverectomy and a total hysterectomy. The doctor doing the ultrasound after a significant change on MRI said he was 99% sure it was not cancer but they did it anyway. At the time I was terrified of cancer because I had just found out I carried the BRCA gene mutation. I went from being terrified of cancer to not caring if I lived or died and I was getting sicker by the day. I can honestly say I wish I never had that biopsy.

I was diagnosed with fibro first, then a couple months later CFS. I think they are both equal in me.

I recently learned that fibro and cfs go hand-in-hand, although I was diagonosed with fibro 20 years ago and cfs just a few weeks ago. I also learned that RLS is also a symptom of fibro. I just joined the site today and cannot believe the love and support that is out there. It helps knowing I"m not alone.