Who thought they had fibro but found that

Discussion in 'Fibromyalgia Main Forum' started by mrpain, Dec 20, 2006.

  1. mrpain

    mrpain New Member

    Who here has either been told they had fibromyalgia and/or chronic fatigue syndrome or thought they had it, to later find out that it was something else?? And if that was the case, what diagnosis did you end up with?

    The reason I ask is there is so many things going wrong with me that I sometimes wonder if I don't have something more than fibro or cfs....And how would one know when our disease is so bad and has so many symptoms..

    My foot dr. thinks I may have diabetes, but it has the same symptoms as fibro & cfs.. That's just one example which can be determined by bloodwork.....but you understand where I'm coming from though.. Let me know if you found out something either in addition to, or something entirely different than..
  2. hugs4evry1

    hugs4evry1 New Member

    I've had Fibro for years and started this awful flare over 2 1/2 years ago.

    But.....last year I thought I was dying, just felt so horrible, depressed (odd for me) and I went to my doc and insisted it must be something other than fibro. It was.....it was hypothyroid too.

    This year same thing....I knew something was wrong although I was feeling better than I had in 2 years and doing many things I couldn't for so long, yet still struggling through each day and hoping that this wasn't going to be my 'new' best.

    This time my symptoms were tingling in my hands, arms and reaching up to my face, again with dibilitating fatigue. Turns out I was right again, this time it's pre-diabetes with some problematic hypoglycemia thrown in for fun.

    I'll be making an appt with an Endo soon to see if it's something more than that, and it could be because my blood sugars are all over the place.

    I always try to recommend to others to NEVER ignore new symptoms. And please.....don't ever let your doc tell you your symptoms are all due to Fibro, especially if you know that something's going on in your body.

    Happy Holiday Hugs,

    Nancy B
  3. dragon06

    dragon06 New Member

    my doctor has been very good about not writing symptoms off to fibro. We have caught a few other problems I have this way. I still have fibro though, just a few other things with it.

    ANNXYZ New Member

    lyme disease after years of being Dxed with CFIDS / FM.

    Many who have lyme are not posting atthis site anymore . The most accurate test for lyme disease is Igenex Labs western blot .

    I wish ABSOLUTELY EVERYONE HERE would get an Igenex test .
  5. jaltair

    jaltair New Member

    I believe that if a person as the tender spots and other symptoms that go with FMS that they have FMS and not necessarily some other elusive medical condition. I also believe that FMS could be due to autoimmune disorder. That’s a very large family of disorders.

    I was diagnosed some 4 plus years back with FMS, symptoms became more severe and the fatigue nearly unbearable. I was told that I had CFS as sleep studies didn’t show anything.

    I was put on medication, and the medication did help the symptoms. Also, the rheumatologist I was going to became suspicious that I could have lupus due to blood work. He put me on Plaquenil. I was on it over a year and with more blood work and tests showing that I had antibodies to double stranded DNA. That along with other test results determined that I had lupus. The rheumatologist has continued me on the Plaquenil and added prednisone. I had been on prednisone only for the flare this past summer, but I’m still on 5 mg one day and then 2.5 mg the next day (alternating). I’m still on the medication that I started for the FMS as I still have FMS and have pain when I move with spots just all of a sudden hurting like I’ve been hit hard.

    This whole thing is hard to deal with, I know. Many of us have been dealing with it for a long time. Through all the testing that goes with FMS (to rule-out other disease), we may or may not find we have something else going on.

    It’s hard because FMS is a syndrome and not a specific illness or disease as is CFS.
  6. zeldaj

    zeldaj New Member

    I never knew that my problems were because of FMS until 4yrs. ago when my PCP said I probably had this. He said not to tell anyone as there was no cure and docs would think I was crazy. I don't know why but I didn't leave this guy and now he has sent me to a rheumatologist who said I had severe FMS, extensive osteoarthritis and chronic myofascial pain. He put me on 2 pain meds, but hasn't really done anything else. I am very depressed and in constant pain. I just think we need to find the right docs who will actually take care of us and not make us feel worse. I am a senior citizen, so I guess a lot older than most of you, and can't do anything because of the pain. I am also on an HMO and that makes it hard to find a doctor who specializes in these syndromes. I too am beside myself wondering what I should do. I haven't even had any blood drawn. I am going to a cardiologist as I have had some problems with my blood pressure and chest pain recently. So, I am hoping that he might give me some advice as to who to see.
    This is my first time with this group and read some of your messages and felt that all of you are very knowledgeable about our problems. I don't think I actually helped with your request, but wanted to let you know you are not alone with not knowing what you really may have. Hang in there.

    ANNXYZ New Member

    Have U considered an Igenex test for lyme or the possibility of celiac disease ? These can cause TERRIBLE pain and disability . I would consider it since FM usually ( not always ) afflicts women.

    ANNXYZ New Member

    Have U considered an Igenex test for lyme or the possibility of celiac disease ? These can cause TERRIBLE pain and disability . I would consider it since FM usually ( not always ) afflicts women.

    ANNXYZ New Member

    Have U considered an Igenex test for lyme or the possibility of celiac disease ? These can cause TERRIBLE pain and disability . I would consider it since FM usually ( not always ) afflicts women.
  10. ANNXYZ

    ANNXYZ New Member

    Have U considered an Igenex test for lyme or the possibility of celiac disease ? These can cause TERRIBLE pain and disability . I would consider it since FM usually ( not always ) afflicts women.
  11. ANNXYZ

    ANNXYZ New Member

    Have U considered an Igenex test for lyme or the possibility of celiac disease ? These can cause TERRIBLE pain and disability . I would consider it since FM usually ( not always ) afflicts women.
  12. ANNXYZ

    ANNXYZ New Member

    Have U considered an Igenex test for lyme or the possibility of celiac disease ? These can cause TERRIBLE pain and disability . I would consider it since FM usually ( not always ) afflicts women.
  13. MamaDove

    MamaDove New Member

    i must be short with this reply but just wanted you to know my story...please read my profile for most details (long and no paragraphs, but detailed)...

    I believe now this is auto-immune in nature and for me has always had an inflammatory based response although all my docs disagree...anything i did I swelled abdominally first, then every where else...

    I recently faced a horrible 2 months in the hospital and through all the horrible meds, testing and near death, it was finally determined that I have severe Crohn's disease...I am currently fighting my butt off to come back to some normalcy but the biggest thing that sticks in my mind thorugh this whole ordeal is that during this rotten ordeal, I kept telling my docs I HAVE NO FIBRO SYMPTOMS AT ALL...NONE!!!

    It was like all the 'disease' I have been feeling for months/years, the symptoms I had were the majority that you find on any list of fibro/cf symptoms...they had all gone to my abdomen and organs and staged an all out war...which was winning by the way...

    Now I am suffering the after effects of anti-cancer drugs to stop the swelling and bleeding and all the antibiotics and pain meds that didnt agree with my system either plus all the stress from the specialists who recommended drugs that cause lymphoma among other things...

    I am thankful I knew as much as I did, learning from many years of having these illnesses and believe I went through this HELL to actually figure it out once and for all...

    FYI, I had a special test done by Premetheus Lab to conclude Crohn's disease and the link I found was somehtign that had been discussed here before...IgG, IgM and IgA, play some role in this...It came up on this test as well as the profile my rheumy did 2 years ago that indicated this was an indication of auto-immune disease, active or dormant and consistent with severe disease...I was then diagnosed with fibro/cfs...DUH!

    This is what we need to find out through all the people on this board, the underlying cause of their so-called fms/cf/ms/mcs, the list goes on...

    When I was first diagnosed with ulcerative colitis, the doc told me there was 'no known cause, no known cure"...BUT THERE ARE 3 DRUGS FOR YOU TO TAKE...I stayed in so-called denial cause I knew there was a cause and I knew there was a way to combat the problem...

    I believe that I am now on the right path...Crohn's diagnosis is only that, a diagnosis, it can be beat, I am living proof of that now...I may have along way to go but all the changes I have made along with standing my ground and knowing more than the docs wanted me and my husband to know, have brought me to a better place...

    I really want to tell my entire story to everyone on here to inspire them to keep fighting, there is a pot-of-gold at the end of this suffering, there truly is...

    I can't believe how much I typed but I am glad I got to share some of my story with you...we all need to look outside the box and go with our 'gut' instincts...I found many answers when my gut wasn't even working...tehe

    Peace to you and everyone on this board, we will conquer this crap!!! Love, Alicia
  14. pam_d

    pam_d New Member

    ...dx'd with fibro, but have honestly felt that much of my problem was undx'd food allergies....when I finally got treatment for that, my fibro seemed to turn a corner, and has been much better since. Not to say I didn't have fibro, but certainly food issues made it worse. In the last year, I've had leukemia, but that's a whole 'nother story.

    I have a friend who's had pretty severe lupus since age 26, was on prednisone for 20+ years. After she went through menopause, her lupus has been so much better, she's all but cured---she said she always felt hormones had a lot to do with her lupus symptoms, but couldn't prove it. Now, it seems that yes, she DID have lupus, but it was very hormonally driven.

    I think there's true FM, CFS, Lupus, etc. certainly, but that there are a lot of underlying reasons for why our symptoms sometimes get dramatically worse (or better, for that matter). And if you can nail down those underlying issues, you can often effect positive change in your symptoms.

    [This Message was Edited on 12/23/2006]
  15. mrpain

    mrpain New Member

    annxyz- I've been tested for celiac disease by an allergist
    which said the test were negative to gluten. My primary doc told me that I didn't have lupus, but I still wonder about that one...but thanks for responding..

    mamadove- thanks for taking the time to share your story. I guess even though my journey has been long down this road of fibro & cfs, there's still more answers that need to be found..

    pam-d- food allergies do play a big role and that was the very reason I went to the allergist....but to no avail...
    I'm still searching...All I know is the doc only sees high triglycerides and I'm high on the normal range when I took a diabetes blood test.. Other than that, there's no real proof I'm sick other than fibro/cfs and all it's symptoms..
  16. sydneysider

    sydneysider Member

    After a string of co-incidences I finally (after 25 years) found out that I have damaged discs in my neck, and damage to my right ear's balance mechanism.

    Although I still believe that I have FM, symptoms such as pins and needles, headaches, weakness in my arms, muscle tension in neck and shoulders, dizziness, were all listed as FM symptoms, yet turned out to be symptoms of these other disorders.

    I question the long list of symptoms attributed to FM.

    Prickles has a thread about illnesses that can be mistaken for FM/CFS.

    It is difficult to get to the bottem of things. In the end my problems were figured out by specialists, but even so, without the co-incidences that happened I still would not know.

    I'm astounded that my disc problems, which show up even on an xray were left undiagnosed. The doctors tell me that they consider disc problems 'wear and tear' and wouldn't even look for it in anyone under 50.

    I think it just goes to show that you have to persevere. I've found that in general most doctors only want to deal with the easy cases.
  17. mxmom419

    mxmom419 New Member

    Speaking of Neuro issues do you think that having a steady tx w/Chiropractor would be beneficial for the nervous system to keep everything flowing or does it make it worse? My Chriopractor talks so much about how the nervous system is key to all symptoms and getting a good flow is important. Do I feel better with Chiro-tx? Yes and No. My lymph system is so crazy that half the time I can't tell where my problem is coming from. Anyone who uses a Chiropractor to help...feedback thanks
  18. Catseye

    Catseye Member

    Absolutely, a chiropractor will keep things running smoothly! I see one regularly. My first chiropractor also was the one who turned things around for me. Not only be getting the energy running, but he gave me a pamphlet about cfs that talked about food intolerance, among other things. That was my first glimpse at "other than the doctor" things I could try and it got me started looking on the net for other things I could do to "fix" my broken body. Now, I'm almost "fixed"!

    Also, the other great healer I've been seeing is an acupressurist. If you ask me, the chiropractor and the acupressurist are the real "doctors" and the other guys are just "drug, test, surgery salesmen". The chiropractor and the acupressurist know how to heal, not just how to alleviate a symptom or two at a time.

    If your lymphs are swollen then you probably have an infection or are in bad need of a detox program. Have you looked into either of these?

    Merry Christmas

  19. mxmom419

    mxmom419 New Member

    Ms. Karen Thank you so much for your info. I go to a massage therapist (LMT) who does lymph system drainage and she has been sooooo wonderful. She referred me to a doc who has really impressed me. I'm awaiting results from EBV and Mercury toxicity. He thinks one of two things may have happened to me. One I got EBV and for a year have been misdiagnosed and 2 at the same time I became sick I had a flu shot a few weeks before and maybe I'm allergic to the mercury and my body is fighting the toxicity. Soon as we get those results back hopefully a detox is in my future to get the ball rolling. But, maybe to late to fix the permanent job it has done to my body. I am worried that CFS is incurable but, from the post's looks like maybe manageable. My Chiropractor is the one who told me to keep looking for a doc and not to give up that the lymph swelling I was having was not normal no matter what the other doc's said. I trust him and between the new doc, my LMT and Chiro I hope to get back to the old me. I was thinking of quitting going to the Chiro because of expenses but, knowing it helps from your point of view I'll keep trying to rub my nickels together. Thanks again Karen.
  20. mxmom419

    mxmom419 New Member

    PS. How did you go about your food list? I have gained alot of weight since I got sick and assumed it was from no exercise and laying around all the time but, I've read some post's about food and am really interested in seeing if that will help as well. Thanks

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