The FM Continuum?

Discussion in 'Fibromyalgia Main Forum' started by Musica, Dec 1, 2005.

  1. Musica

    Musica New Member

    I saw my rheumy on Tuesday. He still hasn't come out and said I have FM, but he described it the best he has so far. He didn't mention a continuum, but the way he described healthy as being "here" (stretching his right arm out) and FM being "here" (left arm out), with me being somewhere in the middle, that's what he must have been talking about. I have read that FM is on a continuum, not necessarily you have it or not. I don't have IBS and a lot of other related conditions, but I do seem to have tender points to some degree and definite skin sensitivity.

    Massages are great with a heavier pressure, NOT with a light touch! Also, I cringe to even think about how it felt to try one of those vibrating massage cushions or those pronged things you can use to massage someone's head. He said "people with FM" wouldn't like those things, either, and wasn't surprised that I couldn't abide them.

    He is focusing now on quality of sleep. Which, of course, has a strong interaction with FM. He says he has seen others get back to feeling normal, even those with strenuous jobs with their hands (my hands always feel crummy), with better sleep. I am already on a CPAP for sleep apnea, but he wants sleep doc to work on decreasing the cortical arousals that showed up as increased even during my titration study.

    Have you heard of FM as a continuum? I have, a couple of times. Do you still consider being on the continuum as having FM, just say, less severe? Is it a way for docs not to actually label patients with FM to keep them away from that stigma?

  2. Mikie

    Mikie Moderator

    I think it's just another way to help someone understand. My doc uses a Venn diagram with three overlapping circles. One is FMS, one is CFIDS, and one is IBS and other conditions. Some people have only one circle, some two, and some three. They overlap where symptoms are common to all these illnesses/conditions.

    The circles needn't all be the same size and things can change over time. For instance, five years ago, my FMS and IBS would have equalled the CFIDS circle. Now, with the Guai for FMS and the Doxy seeming to have cured my IBS, those circles would be much smaller than the CFIDS circle. CFIDS is now my worst condition.

    About 1/3 of people with these illnesses are bedridden and either plateau there or get worse. About 1/3 go back to work or continue to work with mild symptoms. The last 1/3 are somewhere in between. I believe that it is never hopeless and the sooner one gets treatment, the better. I'm no longer bedridden and on Morphine but I'm not well enough to work--yet.

    I had been sick for 10 years when I finally became bedridden most of the time. It really looked hopeless. My rheumy didn't want me on opiods and my pain management doc did. No one knew much about these illnesses nor what to do. I became obsessed with healing and researched until I started finding treatment options from things mentioned on this board.

    Progress has been agonizingly slow but it has been progress nonetheless. Regardless of how one visualizes our illnesses, there is always hope. You aren't stuck on that continuim and can move toward the healthy end.

    Love, Mikie
  3. Musica

    Musica New Member

    The image of the circles is very helpful, too. Especially how each one can change sizes. I am so glad you are improving, and I know you are a fighter and will get back to work one day! I'm sorry to have lost you as a moderator, but I'm glad you are still posting and are concentrating on taking care of yourself.

    You have obviously had a loooong road in your recovery. I hope pray that the rest of the road is smoother and does not take as long. You would still be here or be a FM/CFIDS advocate, right? You have so much to offer!!! So this is my opportunity for a personal thanks, Mikie.
  4. minimonkey

    minimonkey New Member

    From all the reading I've done on this (which is A LOT!) -- I do believe that FM is a continuum. Many of us have some, but not all, of the symptoms. I have severe chronic myofascial pain, IBS, peripheral neuropathy, TMJ dysfunction, migraines, occasional panic attacks, sweating, and the requisite tender points... but not the fog or horrible fatigue that some of you suffer. I was suffering from chronic yeast problems, too -- but Diflucan seems to have knocked that out for now.

    I was also sleeping poorly - but that has changed dramatically with Effexor.

    Test results have ruled out nerve compression and spinal injury -- nothing else concrete to account for any of this. My doc hasn't diagnosed FM yet ... don't know if he will -- but I'm pretty sure that is what I have. My mom has a lot of the other symptoms of FMS, but no diagnosis.
  5. Musica

    Musica New Member

    Are you a singer? Sounds like it from your nick! I am a pianist and accompanist, especially for choirs!

    I'm glad you have found some things to help you. A continuum does make sense. It was a little odd that he didn't say "yes, you have FM, but mild" or something like that. Again, maybe he tries to avoid that dx if possible, more for our sakes than anything.

    Mikie, I forgot to say, I also like the 1/3 severe, 1/3 mild, 1/3 inbetween. There are different degrees of any illness/syndrome, so why not FM? It's just such a stigmata to have, I guess that's why we don't get a definite dx sooner.
  6. Mikie

    Mikie Moderator

    I appreciate it. Yes, even if I were to consider myself cured, I would continue to advocate for us. Both my daughters have FMS. Both have different symptoms but some are the same.

    I think in the past, docs either didn't believe in FMS or were afraid to diagnose someone because other docs didn't believe in it. It's still such a strange illness that even docs who are knowledgeable about it don't really know that much.

    I think the new FFC's will give a lot of credibility to the illness and will help people far beyond what has been done in the past. One thing I know for sure is that these illnesses cannot be attacked on only one front. One must fight them on every level because they cause so many symptoms and accompanying conditions and infections. A comprehensive approach is what has really helped me.

    Once on has the infections and sleep under control, one is halfway there. Managing pain, activity, and diet are also essential. Finally, the accompanying conditions must be addressed.

    I think the thing which has been the main roadblock in the past is the apathy of the medical community in general and their acceptance that there is no treatment for FMS. There are many treatments and while they don't all work for everyone, through trial and error, one can find ways to treat the symptoms.

    Thanks for the good wishes. I pray for good things for you and all of us here who come together to learn and offer support.

    Love, Mikie