For Whatever It's Worth, Here's My *Long* Bio....

Discussion in 'Fibromyalgia Main Forum' started by dhcpolwnk, Apr 15, 2003.

  1. dhcpolwnk

    dhcpolwnk New Member

    With apologies to all on this list, I am posting my contribution (below) to the bios that Jellybelly has been collecting. I am doing this in a new thread because the bio is so long, and because I'm not sure it really fits with most of the other stories. I have lived with multiple sclerosis a lot longer than I have lived with fibro, and so I'm not sure how much of a contribution my bio would make to the kind of collection Jelly has been trying to pull together.

    However, since I do have both MS and fibro, I thought my story might be useful in approaching Montel Williams, if that still is on the table.

    By the way, it happens that Fibromyalgia Awareness Day--May 12--is my birthday. To be honest, I'd rather celebrate my birthday some other way than being reminded of fibro, but it would be a nice "gift" if somebody could figure out what this condition is all about and how to treat it effectively!

    Anyway, here's my bio. It's not a finished article, and again, I apologize for the length. I wrote it aimed not at members of this board but rather with members of the press or general public in mind. So I have included explanations that I know most people on this board don't need. I hope it may be helpful in some way.

    --Laura R.M.

    ===========================

    I am a public policy analyst, consultant and writer who specializes in disability and health-care issues. I'm also an amateur composer.

    In 1978, at age 32, I was diagnosed with multiple sclerosis. But my MS symptoms really started 11 years earlier. Like many others with MS, the diagnostic process was long and difficult. Little did I know that in August 2002, I would be diagnosed with another condition that, like MS, is difficult to diagnose, difficult to explain, and difficult to treat.

    I'm a former newspaper reporter/copy editor, college journalism instructor and (occasionally, still) free-lance writer. I'm also a wife and mother. After 12 years of working as a consultant to the National Multiple Sclerosis Society--10 of them as Government Issues Coordinator for the Multiple Sclerosis California Action Network (MS-CAN), an advocacy coalition of the MS Society's California chapters that I started--I left the MS Society. Although I still hope to take on occasional consulting jobs, I can no longer work full time or even at a regular part-time job. I use a cane in my home, but generally use a scooter when I go out in the community. I did my government relations work from a home office, though I did attend meetings and travel to events in different cities.

    For years, my neck and shoulders had been hurting almost daily. Finally, one day in 2002, my husband asked my doctor what could be done about the pain. (For some reason, I'd never even asked about it before. I'd just assumed it was related to myoclonic jerks associated with my MS, or to moving my body awkwardly because of MS balance or fatigue problems.)

    I was referred to a physical medicine doctor, who very quickly diagnosed fibromyalgia. I was very lucky in that. I know a quick diagnosis is very unusual with this condition. Most people with fibromyalgia go through a process that more closely resembles my diagnostic experience with MS. But in my case, within the week, two more doctors confirmed the diagnosis. This wasn't exactly pleasant, since the the doctor diagnoses the condition by pressing on various "tender points." If the patient reacts in pain to at least 11 of them, the diagnosis of fibromyalgia is confirmed.

    After the diagnosis, my pain seemed to get worse, and I started having major problems with sleeping. But my doctors really didn't seem to understand the condition, even though they'd diagnosed it. At least, they certainly didn't seem to have any ideas about how to treat it. I even had to ask for referrals to physical therapy and to a class on fibromyalgia that was offered by my health plan.

    Trying to find the right combination of medications to address the fibromyalgia pain without making some of my other problems worse has been a major challenge. As with my MS, I've had to go through a process of trial and error to find an appropriate treatment. This is a real balancing act, because I have not only MS and fibromyalgia, but also irritable bowel syndrome (IBS) and temporomandibular joint (TMJ) dysfunction, as well as gastroesophogeal reflux disease (GERD). Several of these conditions, I have learned, are frequently associated with fibromyalgia. And medications for any or all of these conditions can have side effects.

    I suspect that I had fibromyalgia long before it was diagnosed, but my problems with it definitely have accelerated since the diagnosis. It has been particularly frustrating for me to find that my doctors don't seem to know much about this condition, and some don't seem to care much. One initially refused to accept a fact sheet that I attempted to give him about it.

    One thing that has been particularly difficult for me has been trying to get doctors to coordinate my care. I have both multiple sclerosis and fibromyalgia. How do these conditions interact with one another? How do medications and treatments for one interact with medications and other treatments for the other? Too many doctors seem to compartmentalize their responsibilities. So for the most part, I've had to research this myself. At times, I feel as if I'm walking a tightrope without a safety net.

    Because I have been living with MS for years, and because I am a disability rights and health-care reform advocate, I think I might have had an easier time than others when it comes to dealing with some of the limitations that fibromyalgia symptoms can impose. I long ago rejected the negative stereotype of disability that is so deeply ingrained in our society--and since I'm lucky enough to have a very supportive husband--my self-image isn't affected by fibromyalgia. I know that many others are not so lucky.

    For 10 years, I volunteered as a peer counselor for people with MS. I heard many stories about spouses and other family members, friends, employers and others who simply couldn't accept the fact that the person I was counseling had MS. The comment "But you look so good!" was a common and frustrating topic of discussion and even MS magazine articles.

    I know the same thing is happening to people with fibromyalgia. My MS symptoms make my disability visible to others, especially when I'm using my scooter. But I still remember how I felt before I started using a cane but after MS fatigue had started to limit my energy and endurance. For example, as I walked rather unsteadily back to my car one day, a man yelled out, "You're drunk!" That's when I started using my cane regularly.

    But nobody can see the pain in my neck and shoulders, or feel the persistent burning in my esophagus, or the soreness in my throat that has forced me to stop singing (which I used to love doing) and which periodically makes it difficult for me to talk. Nobody can see the fatigue I feel from lack of restorative sleep, even if I've been in bed for seven or eight hours.

    These days, if I feel dizzy or off balance, or if my muscles feel weak, I can't tell whether the problem is MS or fibromyalgia. I just know I have to deal with *both*, and there doesn't seem to be a lot of solid information about fibromyalgia, much less about treatment of people who have both conditions.

    --Laura Remson Mitchell





  2. Dlebbole

    Dlebbole New Member

    Laura, I really connected with your bio. I underwent testing for MS in the mid-80s. While it appears I don't have it (just lots of neurological symptoms as a result of my CFS/fibro) I have a pretty good idea of what you are going through with both. Currently, I have breast cancer for which I am undergoing treatment. Like you, I constantly question what is happening...is it the cancer treatment or is it CFS/fibro. It's an extra burden. I wish you luck. Take care. Diane
  3. Chrissy2

    Chrissy2 New Member

    Laura, thank you so much for sharing this thorough bio!

    God Bless-
    Chrissy
    [This Message was Edited on 04/17/2003]