WHOM DIAGNOSED YOU WITH CFS FM AND HOW LONG DID IT TAKE

Discussion in 'Fibromyalgia Main Forum' started by FOYBOYFOY, Jul 23, 2006.

  1. FOYBOYFOY

    FOYBOYFOY New Member

    HI
    WHAT TYPE OF DOC DIAGNOSED YOU WITH CFS & FM (ie rheumotolist ?) and how long did it take for your diagnoses ? did you have different doctors give you different diagnoses ?see my profile for my story
    thanks and GOD bless foy
  2. TAM

    TAM New Member

    Hi Foy,

    I have been ill since nov 2000, and after seeing several doctors and going threw many tests (which some tests were very painful) none of the doctors could help me or tell me what i had.

    Finally in may 2002 i found a rheumatologist that diagnosed me with fibromyalgia and cfs. It took a long while to find the right doctor that could tell me what i had but i'm blessed i finally found one, i still haven't found any help for the pain and its getting worse daily but i am thankful to know what i have.

    I hope you find the right doctor. I would just keep looking
    until you find a doctor you feel you can trust and you also feel they are correct in there diagnose of what is wrong with you. Take care, Good luck, Tammy.
  3. scrappnmom

    scrappnmom Member

    For me, the very first time I went to see a Rheumatologist and described how I was feeling, and he examined me, he immediately said he was sure I had FM (Primarily!). Of course, my youngest daughter had been seeing him for several years with her Lupus, and I had always gone with her to see him (she was dxd at 14 yo) so he also ran all the battery of tests on me too but they were all normal. The very next time I went with my daughter to see him, he told her that I was more complicated to treat than she was! Now, I had had symptoms of FM for a few years, but had never put it all together. My Primary dr had given me anti-inflammatories several times for pain. But, that last year that it was getting worse and worse, I had figured out that I thought I had Lupus too. But, when the Rheumy explained it all to me, FM made perfect sense!

  4. FOYBOYFOY

    FOYBOYFOY New Member

    tam
    thanks for your time. are you still working ? GOOD LUCK TO YOU AND GOD BLESS FOY
  5. Kim

    Kim New Member

    Mayo Clinic in 1999. I was so run down I only weighed 107. I was on death's door. They convinced me to be hospitalized and have my depression treated. Once that happened, I was able to slowly gain 10 pounds, get some eneregy and return to work. I still have bad days and I have another disease, but the chronic fatigue and fibromyalgia don't totally consume me anymore. Praise the Lord.
  6. FOYBOYFOY

    FOYBOYFOY New Member

    THANKS FOR YOUR TIME. GOD BLESS YOU AND YOUR DAUGHTER
    FOY
  7. FOYBOYFOY

    FOYBOYFOY New Member

    THX FOR YOUR TIME. GOD BLESS AND GOOD LUCK FOY
  8. blessedmom2four

    blessedmom2four New Member

    almost 3 years, mostly they would give me false hope that they knew what it was then after all the testing they would give me some generic explanation as to what was wrong....

    i think i had to have seen atleast 50 dr. 30 would be a low number
  9. carebelle

    carebelle New Member

    I think I've had this since my teens but really got bad 6 years ago. It took them three years to DX it. Its taken me 6 years to accept I have an illness nobody knows how to treat or make go away.
    My Rheumatologist DX me
    [This Message was Edited on 07/23/2006]
  10. gymmbabe

    gymmbabe New Member

    My family doctor tentatively dx'd me after running several tests. She referred me to my rheumatologist and he confirmed dx after 3 visits. (just waiting on the test results he ordered).

    dawn
  11. Dainty45

    Dainty45 New Member

    It took nine months for me to be diagnosed, by a Neurologist, I was sent to him because of my balance problems. When I told him all of my other symptoms, he put two and two together. I had a number of blood tests done, MRI, to no avail. Then he sent me to a rheumotologist for a second opinion! Sure enough he was right on the money. I was diagnosed in 2004, my noticable symptoms started in 2003.

    Take Care!! SB
  12. sfrazier

    sfrazier New Member

    Honestly I was dx'ed with fibro by my PA the first time I went there with the problems. She then sent me to a rheumotolist at Iowa City to make sure that the meds she had started me on were okay and to back up her dx. Since it got worse she send she wasn't sure what else to do for me so I go on line on this site and looked up the dr.'s on here went to one and he immediatley agreed with the dx. I was very luck cause I only ran across one rheumy that was an idiot. He was the one that told me never to go off my anti-depressents.......SueF
  13. springrose22

    springrose22 New Member

    I did my own research, asked my family doctor if CFS could be my problem, and she agreed. Then, I was sent to a rheumatologist, who did nothing, but confirmed the diagnosis. Since then, I have done all my own research, a lot of it on this site, and have pretty much been in control of my own treatment, which consists of REST, and some supplements. I am getting a bit better. Marie
  14. diva42597

    diva42597 New Member

    I began experiencing symptoms...very severe symptoms in 2001. Unfortunately, I did not have a diagnosis until two months ago. It has been an uphill battle. Like many I did some of my own research, but trusted once I had a diagnosis...myofacial pain syndrome and 3 impinged nerves...that it was correct. It was finally a chiropractor that diagnosed me with fibro. Finally, it made sense. My mother had it and gave it to me. Then I even realized that I had symptoms long before 2001, I just didn't know it wasn't "normal."

  15. jenni4736

    jenni4736 New Member

    I have waited for over 12 years for answers...they only manage to bring more questions.

    THe juvenile RA found me at age 1 year. I woke up to a knee the size of a grapefruit. I had spent the night with my grandmother who immediatly took me to the local hospital.I was a patient of Scottish Rite CHildren Hospital for all of my adolecents.

    I have FM, CFS, RA,and now LUPUS (though the type is still in talks).

    THe FM and CFS DX's came about 12 years ago for me by a Rheumy. I was really o.k. for most of that time.

    LAst November, I flat fell out. I got the fatigue too awful to lift your head or brush you teeth. Completing a mental thought was too much. I started getting rashes on my face, arms, legs. The joint pain got really severe. My feet starting turning a pretty blue sometimes. If I went in the sun...the rashes would turn a pretty shade of pinkish/purple. Many other things came with this new round of chaos.

    Four specailist later....LUpus is the path now. It may be SCLE or SLE. There is still some discussion there....still waiting for answers...

    and waiting.....UGGHHH! It is a frustrating process. I am always waiting for an appointemnet or a lab result. Each one...a tiny piece to a massive jig saw puzzle I wonder if anyone can solve....still waiting...

    Hugs to everone who is still waiting for answers of your own.

    Jenni
  16. Lolalee

    Lolalee New Member

    FMS - Rheumatologist - 1st visit My primary care MD had already ordered lab work to check for Lupus, MS, Lyme, RA. Those tests were negative so when I took those results to Rheumatologist, he did tender point check and I had pain in almost all of 18 points. I met criteria for all the symptoms of FMS.

    CFIDS - Internist - 1st visit one year after FMS diagnosis. She suspected CFIDS on 1st appt, but confirmed after blood work checking my natural killer cells and Tcell count, also active Epstein Barr virus.

    Lolalee
  17. dani78xo

    dani78xo New Member

    welll at first everyone thought it was mono, so we just kindof kept an eye on it and thought it would go away.

    when i'd had it for almost three months, i went to see an infectious disease doctor. he suggested it might be fibromyalgia, but he didn't really know too much about it.

    finally i got to see a rheumatologist, and within 5 minutes of the evaluation, he diagnosed me with FM. he was absolutely positive that i had it, and he still is.

    overall, though, it took me about..three or four months to get diagnosed.
  18. KMD90603

    KMD90603 New Member

    I first went to my primary care physician complaining of feeling sick all the time. He drew a whole bunch of blood and said he thinks I have CFIDS. He referred me to a rheumatologist who diagnosed me with FM. I was positive for most of the tenderpoints, however, pain has never been my biggest issue. I had lots of back pain from being large chest (eventually got a breast reduction), and I did get bad pain in my legs. But other then that, it was morely that I was always tired, feverish, and achy from the fever. I'd get sore throats and swollen glands, etc, etc, etc.

    My thought was that rheumatologists seem to mainly deal with FM and other arthritis-like diseases. So, someone on another message board suggested I see an infectious disease doctor, because I suspected that I had CFIDS moreso than the FM. I went to see the ID doc and he ran more bloodwork. He had me keep a daily record of my temps/fevers. Every time I went into his office they'd take my temp and I'd have a low-grade fever. By the second visit, he diagnosed me with CFIDS. I'm currently thinking about finding another ID doc, because the one I'm seeing now isn't doing too much to treat me. I mean, I run low-grade fevers at least 3 days a week, and they seem to be going higher and higher. They used to stay in the low 99 range. Now they're between 99.5 to 100 degrees.

    Anyway, enough babbling. My personal opinion is that rheumatologists are great with FM, and ID docs are great with CFIDS.

    Gentle hugs,
    Kim
  19. FOYBOYFOY

    FOYBOYFOY New Member

    THANKS FOR YOUR TIME GOD BLESS FOY
  20. FOYBOYFOY

    FOYBOYFOY New Member

    KIM
    I 3 OF MY DOCTORS SUGGEST GOING TO A MAYO OR UNIVERSITY HOSPITAL(UCLA) HOW DID YOU GO ABOUT GETTING ADMITTED TO SUCH A PLACE ?? I KNOW ITS BEEN 7 YEARS BUT ? IS IT A SPECIAL PROGRAM WHERE SEVERAL DOCTORS COME AND LISTEN TO YOUR STORY ?? THX FOY