does fm really exist???

Discussion in 'Fibromyalgia Main Forum' started by sunshine5050, Sep 18, 2005.

  1. sunshine5050

    sunshine5050 New Member

    Please don't everyone hate me for asking. I heard that some doc. don't beleave it. If the symtoms are there,how can they deny it. Is it because it doesn't show up on an exray?,or because it could be a number of other problems. Has anyone else heard this??
    sunshine 5050
  2. lana33

    lana33 New Member

    I can't remember where I saw this. But there is a way for them to tell. It is just too painful and costly for docs to check it at this time. If they do a spinal tap and the spinal fluid has some substance, I can't remember what, they know it is fm.

    But if most people feel the way I do, they would not have it done anyway. It is not fatal. And symptoms and elimination of other diseases can make a dianoses.

    But like the poster just said, there will some day be a test for it.


  3. Bailey-smom

    Bailey-smom New Member

    is that I have suffered from many pain symtoms for the past 7 years and no one has been able to treat me. My Dr suggested it may be FM and I found this site 2 weeks ago & I thought - this is me - this is me - this is me - this is me - this is me - do you get what I am saying????

    If it is the same Dr that could not fix my pain before that says he does not believe in FM - I'm not much interested in his opinion.

    Hope you feel better!
  4. silky17

    silky17 New Member

    I loved that answer, It is so true

  5. orachel

    orachel New Member

    Or another. You just lemme at 'em, and I'll splat 'em! No, seriously...I've taken to researching FM as my job sorta as I'm way to ill to work right now. I've got 70+ pages of articles, stories, studies, case studies, anecdotes, histories, misconceptions, etc. that I put together specifically to contradict this horrific misconception.

    Cause if FM/CFS don't exist, then we're all completely insane, or something. And the people I've met here are some of the sanest, strongest, kindest people I've ever run into, and every single day most of them deal with pain and exhaustion and weird symptoms and all sorts of things that most people flat out couldn't handle. These women/men are current/former lawyers, published authors, physicians, emt's, artists, waitresses, athletes, mothers (to kids, grandkids, and looots of pets!lol) wives/partners, and amazing friends with ages ranging from about 18 - 90 ish. So if we're all crazy, there must be somethin in the water.

    Yes, I am absolutely confident (and theres' huge evidence, but no definitive proof yet...but they're working on it) that FM/CFS can be caused by a variety of issues viruses, deficiencies in diet and hereditary conditions, hormonal imbalances and imbalances in different substances that affect brain and central nervous symptom. Our bodies simply don't respond to pain the way other people's bodies do. Something that wouldn't have phased me in the slightest...kinda wacking my ankle on a piece of furniture, then tripping a bit and coming down hard on my left leg just to keep myself upright and from falling over...sent me into such an extreme pain state that my husband had tears in his eyes watching me go through it. Pain is amplified many many many times for us, and we have to be careful as there's not much energy for anything, and in my case, energy (even if its just the little I have) can be there one second, and completely just gone in the next second to the point that I almost can't lift my legs or arms...or even eyelids, i'm so exhausted.

    Its real, and it sucks. We all have our stories of how it affects us and we deal with it, but we can all assure you 100% that there is nothing "phantom" or made up about these syndromes. And ps...just for your own research...most of the "data" and articles you look at pre 1995 or so is absolutely totally completely wrong, and all based on misinformation.

    The reason we're all so dang TOUCHY about this subject of reality is because some of us have been devastatingly ill for DECADES...some 40 years or more! Sadly, its only been in the last 10 years or so that any true understanding to the POSSIBLE causation has been explored with any accuracy, in my opinion. Can you imagine being incredibly ill for decades with your friends, employers, insurance companies, spouses and even DOCTORS thinking you were just faking or a hypochondriac? These syndromes actually used to be referred to as the "yuppie flu" because some people thought it was a result of severe depression and lack of physical exercise! So, I personally promise you, whether you're getting this info for yourself or for a dear friend....its so real, its scary...And if it isn't, I personally nominate EVERY SINGLE ONE OF US here on this board for ACADEMY AWARDS....I can't imagine anyone being able to "act" as sick as some of us are.

    Good luck,
    And keep posting. We're always glad to answer questions to bring greater knowledge about these issues!
  6. orachel

    orachel New Member

    But I've only been sick for about 3.5 months! I cannot imagine the courage and fortitude it must have taken some of the people here to make it thru YEARS of disbelief. I've only been dealing withit for a few mos, and I'm already on a soapbox! LOL
  7. hubby

    hubby New Member

    I was officially diagnosed after a neck injury when helping to lift a patient in the hospital, C1 and C2, about the same time as Chritopher Reeves was injusred. I wore a tens unit and continued to work for a year, with PT. They started cutting staff and I didn't have to work, wanted to, always wanted to be a nurse. When I felt I could not maintain my optimal level of care I quit. The Dr gave me a leave with my neck. Have never been back to that place, though I miss nursing.

    Yes it is caused by our personality, I believe as nothing was good enough I did, I strove for the very best in all I did, typical type A.. I also helped everyone I could. So for depression now, it seems I gave all of me away.

    Many things in the picture now that contribute to a flare that I have not had in a long time, but then was on adequate pain killer, and since we have moved this Dr wants to mess with my meds. It took so long for my other Dr to get the right combination for me to get out of bed and have a life for 3 yrs and now I resent it horribly.

    I also have half a stomach so cannot do a lot of the health food things that would help or take some of the organic things. I do know that the question is that we will have a cure or some more relief somehow someday, as when I first started searching this syndrome there was little noted though much more on this website. It helped me get pain pills, you remember skip baker? so sad a situation and have been looking for someone else that can give me the forms to give to this Dr. as his website is gone.

    How we we get it is still very much up in arms, as treatment is, because of it is so different with each of us. I believe I had it all my life, brought on by a back injury when I was about 5. The reason I say this is that is that my mother told me that I complained continually as a child and teenager, of my headaches, not migraines, and a aching all over.

    NOw what child do you know that grows into a woman that continually aches all over with the exact symtoms of this condition. Another indicator was that I went to a chiropractor in hopes to have help and he said I had virtually pain in all the trigger sites in the body. It would be hard to develope a treatment plan for me. That was all back in the 80's.WE knew nothing of Fibro, they were just learning a lot about HIV, then leaving work, and all that getting it confirmed was in 94-95. I was permanently disabled at 48, for the first time around, without a lawyer I was so bad.

    There are times I think I have had a stroke with not remembering words, or remembering what I was doing, that it couldn't be fibro fog, I get changes in vision and my Dr has said several times could be MS, no thank you, have not confirmed and after seeing for Annette Funnicello I could not believe this beautiful woman had gotten so bad.

    Well hope to find out more things as they are really doing so much more testing that it is so nice to read. I even tell my husband of things, and print them out, used to email them to him, but we are retired now so it is hard to make him sit down at a computer to read his messages.

    I believe it has helped him actually stand up for me, know what I have gone through and what will put me in a tail spin. I am so deconditioned right now from continual bedrest it is going to be so hard to get back out there in the world that is big bad and scary. I am so sick of trying to work my way back into the world. I would be just as content in my house, never leaving it, reading and just keeping me and my husband happy/ I guess that is not normal at 56 or fair to my husband, though he now knows what chronic pain is, with siatica for a year now. He may have to have back surgery, and he has never been sick or had any problems except a kidney stone occasionally.

    I have always done gym weights, swimming, step, aerobic etc hiked and there was nothing I couldn't do if I set my mind to it.

    Well I am back to bed to continue to rest, though feel good, hopefully will get some things done today, God only knows I need to. I hate to do that though as usually when I go back to bed I wake up feeling worse than I did when I got up previously.

    Gentle hugs and kisses
  8. ldbgcoleman

    ldbgcoleman New Member

    They have only believed in RA for the past 20 years and they also did not believe in MS either. Medical Science has only scratched the surface. Also be open to the fact that one could have an underlying problem that is completely undiagnosed that could cause the symptoms of FM or CFS. Such as one or more viruses or bacterial infection tah you just haven't been properly tested for. This is a DR failure but the patients are the ones taking the blame.

    By the way noone is mad at you for your post!! Lynn
  9. Rosiebud

    Rosiebud New Member

    the whole medical society would hang their heads in shame at the BARBARIC treatment they have given to people with CFS and Fibro. He says that 50 years ago people with polio and TB were treated like that.

    They dont know what causes our illness, they dont know how to cure it so they say it is in our heads, just like they did with MS.

    We know these illnesses exist, we have them.

  10. CanBrit

    CanBrit Member

    My family Dr is somewhat a disbeliever, although he does provide me with the meds commonly used for FM.

    On my last visit to the rheumatologist, he said that it amazes him there are DR's who discount FM when millions of people throughout the world have symptoms in common. He said that FM is a diagnosed condition, it's just that it's diagnosed through elimination.

    God knows, they put me through every test!

  11. abbylee

    abbylee New Member

    and I am one who does, I've started saying that I have a sleep disorder that causes fibromyalgia symptoms. Since the computer and hard copy of my sleep disorder exist, I offer to have them sent to the doctor in question.

    Now that I have a legitimate abnormal test, I'm finding that the doctors are acknowledging that something really is wrong.