My Rhemy says FM and CFIS blend over to each other. how do know .

Discussion in 'Fibromyalgia Main Forum' started by ckball, Apr 14, 2003.

  1. ckball

    ckball New Member

    which one you have? He said I have Fibro but the fatigue is crippling. When i questioned him if I could have CF instead he said they blend over and are basically the same. Any comments?
  2. klutzo

    klutzo New Member

    This is such a big subject, that there are many books on it. I would suggest "Osler's Web" and anything by Dr. Devin Starlanyl and Dr. Jay Goldstein. They all discuss this subject and give their opinions and reasons for them.
    Opinion on this is divided just about evenly. I belong to the camp that says they are two very different things, but I am open to having my mind changed.
    In my experience (17 yrs. of Fibro) if you get your fibro properly treated and get some decent sleep, you will find your fatigue diminishing a lot, and you will find that your fatigue increases in direct proportion to your pain. In otherwords,with Fibro, on good days when you have no pain, you will have no fatigue, wheras with CFS you may be bedridden, even if you are sleeping well and have no pain.
    You might want to get a second opinion as to your diagnosis if you are still confused after reading up on it.
    Klutzo
  3. Mikie

    Mikie Moderator

    I have both and each definitely has its own special symptoms with a huge amount of overlap of many symptoms. I believe they could well be one and the same illness and that this illness may manifest itself differently in different people.

    My illness started out like typical CFIDS, with a mycoplasma infection which left me crippled and exhausted for months. It continued to manifest itself this way until I was in an auto accident and the symptoms took on more of an FMS character. I was diagnosed with the FMS first, but later I was also diagnosed with CFIDS.

    There is a difference in what we call Fibro Fog and the cognitive problems suffered by people with CFIDS; however, people with CFIDS also suffer from the fog and people with FMS also have cognitive problems.

    My swollen glands, migraine-type headaches, IBS, chronic sore throat, and low-grade temperatures seem to go along with the chronic mycoplasma infection and go away when I am on Doxycycline.

    The Fibro Fog lifted almost immediately upon taking the Guai, but I still suffer memory and cognitive problems. My pain is mostly controlled with the Guai.

    In short, I believe the Guai has pretty much reversed the FMS symptoms, but until the Doxy starves out the mycoplasmas, my CFIDS symptoms will remain.

    I really do feel as though I am battling two separate illnesses even though the symptoms do overlap.

    Love, Mikie
  4. layinglow

    layinglow New Member

    Like Klutzo said, there are differing schools of thought, as to whether CF and FM are the same, just being differing subsets of the same disorder, or are entirely different.

    The Specialist I see holds the belief that they are different. What he believes is not as important, in my mind, as long as I receive treatment for the symptoms of both. I fit the CDC criteria for both. He dx'ed me with FM and says in my case it is predominant as the symptoms I have from the FM are more serious in nature than the symptoms I have from the CFS.

    However I am being treated for both--and this I think is important.

    Best wishes,
    LL
  5. Mikie

    Mikie Moderator

    You're absolutely right. For anyone who fits the criteria for both, it's really important to treat them both. Since there is so much overlap, when you treat for one, it often helps the other too.

    Love, Mikie
  6. ckball

    ckball New Member

    for your replys/ Today my rhemy has set up aerobic physical therapy for me. He said the only treatment for FM is sleep and exercise. I have done my homeork and I know to some extent is true, if that is all you have. But how do your exercise if you can't get out of bed? I have been soooooo tiiiiired lately I am willing to try anything at this point. How do you test for mycoplasma? He has run every blod test that can be normally done and they are all normal. He suggested i might even go to the Cleveland or mayo Clinics to see if they could help me.
  7. layinglow

    layinglow New Member

    I am gonna disagree with your rheumy (that's ok I am often disagreeable *wink*)

    That has become pretty much a cliche, "The only treatment for FM is sleep and exercise".

    There are countless treatments, he chooses to treat those two things.

    FM and CFS are multi-faceted disorders with many systems in your body down and dysfunctional....endocrine, neural, adrenal, gastrointestinal, immune...thermal regulation, circadian cycle...there is a lot to fix..and alot of treatments available.
    I suggest writing down each and everyone of your symptoms. Then begin to do research, lots of long hard research. Find what factors contribute to each symptom. Correct or improve those with meds, supps, vitamins, and alternative treatments. There are many downed systems in FM, we must identify each one, and then be prepared through trial and error of different meds and treatments to either heal or improve them. What works for one individual does not for another. Each individual has an individualized treatment plan that will help he or she.

    For example are some of your symptoms:

    Irritable Bowel Syndrome--check for Candida overgrowth (fungal overgrowth) and treat. You may try Nystatin or Diflucan, and they make you too ill. Switch to Berberine, natural herbs. Now the diahrea and constipation are cleared up as the Candida infection is gone. Maintain healthy gut flora with probiotics. Reduce stress. YOu find your Irritable Bowel Syndrome, is now better, or gone.

    Pick another symptom

    Poor Quality Sleep: try natural aids such as Magnesium at bedtime, or herbal teas. Maybe these don't work for you. You have discovered in your research elavil low dose at bedtime, works for some--give it a try. You are still having many wake ups at night, trouble going to sleep, feeling like you have been run over by a truck in the morn. Try another treatment you have found in research, perhaps klonopin---this works...sleep issues under control.

    The list goes on....tackle each symptom with the research you have gleened.

    Fatigue--B12 injections, Herbal remedies....

    Mycoplasmal infections ---

    Restless Leg Syndrome..

    Pain... address each with the various treatments you have found, until you come across one that works for you.

    You must identify your symptoms, find methods for treatment, and patiently try various methods.

    I now have pain under control, sleep disorder taken care of, restless leg syndrome gone, systemic candida gone,
    fatigue improved, IBS alleviated, neural symptoms improved, chronic infections lessened, BP under control, depression gone, sensory overload/anxiety under control.

    I was bedridden, and decided to tackle one thing at a time, and spend my days researching all possible causes for each symptom, and tons of treatments available.
    I am mobile again. Not normal...but not bedridden...a dramatic improvement.

    START WITH YOUR MOST DEBILITATING SYMPTOMS FIRST.

    If you feel you have both FM and CFS treat both---it takes some time, but you can start marking successes of your to do list.

    Also when I was bedridden--I was in excruciating pain, and felt like I had the worse case of the flu, I had ever had in my life, along with unfathomable fatigue---you are right, how DO YOU exercise like that? Well you just plain can't....you work on those things that are making you feel so bad first...the pain, malaise, and fatigue, and voila...then you can excercise.

    Sorry to have gone on so...my mind is fuzzy tonite..and I probably could have said all this in a paragraph or two...lol...
    Best wishes, LL



    [This Message was Edited on 04/15/2003]