Is it REALLY Fibromyalgia?

Discussion in 'Fibromyalgia Main Forum' started by CreateHope, Sep 10, 2003.

  1. CreateHope

    CreateHope New Member

    After reading all about neurotoxins and Lyme disease, to say the least of Chronic Fatigue, I'm beginning to wonder if anyone will be able to tell me what is really wrong with me. I was diagnosed with FM by a chiropractor two years ago. When I went for a confirmation, the doc that confirmed it didn't do a test or anything. He just said he was good friends with the chiropractor and trusted his judgement. Okay, so it seemed to make sense then. But I still went to another doc who told me not only was I positive 18 out of 18 trigger points (you have to have at least 11 for a + FM dx) I was also sore all over my body, as he said, at least thirty places.
    After subsequent blood tests for RA, Lupus and Lyme, he grudgingly said I had Fibromyalgia. (Was he just trying to get rid of me, because it wasn't anything he could treat?) After failed rounds of herbal treatments, lots of supplements, vitamins, ultracet and other meds that didn't work, I'm fed up. My PCP says I have chronic myofascial pain syndrome (which occurs when FM is left untreated, I believe) and after getting PAINFUL lydocaine (sp?) injections in my back and knees, I'm not really better off then when I started.
    Except that I've learned to manage the pain better and discovered that one Aleve helps me a lot more than any prescription drug I've taken.
    Now, at the tender age of 32, I'm increasingly tired and my knee joints hurt now too. NEW PAIN for me.
    So is it really Fibromyalgia, or do I have something that can actually be treated, maybe even cured???
    Frustrated and feeling too young to be this sick,
    Kate (createhope)
  2. shazz

    shazz New Member

    I have hoped against hope that it is something else... like something there is a CURE for.
    So far though, nothing else has come up and I have been tested for it all.
    As far as the new pain in the knees, I can tell you, that at least for me, fibro does not "zero" in on certain places. Some days my legs are killing me, others it is my neck and shoulders. Sometimes all muscular and others it seems to be more joint pain.
    I have been to so many different doctors before being diagnosed and then to many more afterwards hoping they will find something that can be cured with a prescription.
    It probably is FM.
    I guess it never hurts though to get yet another opinion.
    Maybe you will be lucky and find it is something else.

    Best of luck,

  3. nellie1953

    nellie1953 New Member

    I'm sorry but it certainly sounds like you have fibro. Surely your doctor can offer you something to try and help pain a bit. I was 38 when diagnosed and am now 50 you will have really bad days and then just bad days but there are things a doc can give you to make you feel a little bit better
  4. CreateHope

    CreateHope New Member

    Wow, 23 is young. How has it affected your life? Like did you go to college if you wanted to? Do you date or are you married? (Guess I should check your profile!) I'm too exhausted to put myself out there for that. And with the FM dx and symptoms I feel too ill to complete college.
  5. herblady

    herblady New Member

    i can understand your questioning the fm. have you seen a rheumatologist? i think a rheumy might be able to help you better. my reason for doubting sometimes is i've also been diagnosed with palindromic rheumatism, which has VERY similar symptoms. so i ask myself: do i have just one or both? i can't tell one from the other sometimes. but your suffering is not in your imagination. SOMETHING is causing you to hurt. maybe it IS fm. give it more time and see how things develop. cindi
  6. Beckula

    Beckula New Member

    That's really weird! I was 16 when fell down carpeted stairs at home when I believe symptoms started appearing and now I am 23. I always don't understand why I have it.

    I started with just back problems and they first diagosed me with mild scoliosis because the muscles somehow caused the curve in my back. After reading a bit about FMS, I was a classic case and went back to my doc who didn't think I had it....three years later it's confirmed and now I've been dealing with the pain. It never seems like your age is when you should get the disease...:(
  7. CreateHope

    CreateHope New Member

    I did test positive for the VCS test on the net. I know what your doc means about whether or not I did it right or not. I measured the distance both times but still when I took it on my mom's old computer I didn't do quite as well as when I took it on my laptop which is much newer. Still failed both times.
    Is an Chronic Fatigue Panel an extensive blood test?
    I will check up on the mdl testing.
    Also, I have called Dr. Rolan in Seattle and then went to his website and printed out his 12 page questionaire. He treats FM and CDF as well as other stuff, both holistically and conventionally. There's lots of questions about foods.
    I don't know whether I'd go to Seattle to see him; I need to see my primary care doc first and see if he knows anything about nuerotoxins, the VCS test, cituaguara, etc. What a lot of research to do for those of us who have so little energy to do it!
    Also, I haven't seen a rheumatologist yet. Seems like I should from what you guys have said.

    [This Message was Edited on 09/12/2003]
  8. kimkane

    kimkane New Member

  9. CreateHope

    CreateHope New Member

    I am interested in that website. Anything that will give me more hope.

    I also just want to say that even though I may seem impatient for a cure or anything, I do realize that many of you have been suffering with what I got for many more years than me. You probably know all of the tricks of the trade by now, and I certainly mean no disrespct when I complain so much. I just think that the more all of us research this, maybe they'll find a blanket treatment that works for everyone and we'll all be a lot happier. Ever the optomist.
  10. Mikie

    Mikie Moderator

    So little is known about these illnesses that anything is possible. The tender points are the hallmark for diagnosing FMS. I have both CFIDS and FMS and am on the Guai treatment. My tender points are slowly going away, but the symptoms of CFIDS remain. They are getting better with antibiotic and antiviral treatments. What I am saying is that these two conditions may be two manifestations of the same illness, but they are distinct. People with CFIDS and FMS will often test pos. for stealth pathogens. These are tests which docs do not routinely do. Sixty to seventy percent of us with these illnesses have stealth mycoplasma infections and cannot heal unless these are addressed.

    No one is too young to have FMS. More and more, children are showing up with it. Most researchers believe we are genetically predisposed to our illnesses and it just takes some kind of trigger to set them off. A trigger can be stress, trauma, infections, vaccinations, etc. Looking back, I can see symptoms which showed up in early childhood. It's just that we didn't know what it was.

    It is good to continue to research, but refusing to accept the diagnosis can also be a form of denial which is the first step in the grieving process. It isn't good to get stuck in denial too long. It uses a lot of energy; I know because that is how I handled my illnesses for a long time. Problem is that while I could have been treating myself, I was continuing to literally work myself into the ground.

    Love, Mikie
  11. Anita B.

    Anita B. New Member

    Dear Kate,
    It is natural to doubt if you really have fibromyalgia, since there is no blood test yet to prove it (although there are some blood tests that can suggest immune abnormalities associated with the related condition, chronic fatigue syndrome). You may have to embark on a continued search for answers, reading articles and/or books on fibromyalgia, and perhaps seeing more doctors who are familiar with fibromyalgia (either doctors with known specialities in this area or rheumatologists, immunologists, and complementary and holistic physicians who may or may not be internists, and endocrinologists are more likely to have this familiarity) to satisfy yourself that you do have fibormyalgia (FM) and do not have some other condition.
    The diagnosis should be made based on all of your symptoms, not just the presence of absence of trigger points. Some rheumatologists will not even bother with looking for trigger points.
    As for your age, I know it is hard to find yourself sick in your early 30s, but your young age is not a reason to doubt your diagnosis. Some time ago someone on this board asked how old everyone was when they developed FM or chronic fatigue syndrome; there were many responses to that e-mail and, if I recall correctly, a large number of respondents said they developed their condition while in their 20s or even in their teens. I myself was 23 when I suddenly developed FM and CFS.
    I know that the search for things that help can be very frustrating, but keep looking. Many people on this board have found supplements or pharmaceuticals that help them to a greater or lesser degree. If you are helped by Aleve, great! I have not found anything that helps me yet, but I will not give up looking.
    [This Message was Edited on 09/13/2003]
  12. CreateHope

    CreateHope New Member

    I do believe I have Fibromyalgia. I've not read anything that would tell me I don't. Nor have I seen anyone who says I don't, although some docs are more reluctant than others; perhaps they are the nonbelievers.
    I don't believe I've ever been tested for a stealth mycoplasma infection, so Mikie, I'll check up on that. I don't know if I've had my adrenals checked either. Certainly not by saliva. I had a chiropractor in Denver who suggested hormone level testing by saliva, but the test was so expensive, and as I don't live there anymore my insurance didn't cover it. If this is something I should've looked into that's standard, please let me know.
    Thanks for the continued support and advice.
  13. JP

    JP New Member

    I wonder the same thing and I have stopped going for help because I don't really want to know what I might have. My family doctor helps me with symptoms. I have positive labs that are not supposed to be positive with FMS. Who knows???

    Take care and I hope your frustration and symptoms diminishe soon. Jan
  14. mroc37

    mroc37 New Member

    Hi i just finished reading your emails
    I have fibro and was dx about 8 years ago. This group im in they are getting a package together with letters and pics if you want You would write how you were before fibro and what effect it has had on you and people round yiu.
    They want to send it to washington To mra bush
    Hoping she may be able to help us get this disease to be recognized for what it is
    Any way If your interested email me at
    Thank you Marianne
  15. MaBear

    MaBear New Member

    Please pull up posts for MaBear and read about neurotoxins. Ma Bear