> I have fibromyalgia.
>
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> I will be going to the doctor again as soon as I get insurance. Until then... help?

First off, a great big *HUG* for you. I think you've sort of known about this, or had suspicions for awhile, haven't you? I'm sorry for that -- I know it can be frustrating.

Second, I'd like you to know that I'm here for you anytime you want to talk. I've been dealing with fibromyalgia all my life, so while I'm not exactly a medical expert on the subject, I have been through years of personal research and testing out different treatments to see what works best, all while struggling to remain as "normal" as possible. I may not have a solution to any particular problem, but I can definitely offer at least some limited form of understanding.

My personal email is iicor4seven at pacbell dot net (with obvious replacements), and unless for some reason SBC goes bankrupt, it will remain so for awhile -- in other words, you can always reach me there. My AIM screenname is, has been and will remain "oneblazex" sans quotes, and I'm always on AIM when I'm online (which is mostly all day, now). You can have my phone number if you'd like to actually talk, too -- though I warn you that telephones and I have a mutual distrust of one another and I tend not to be very coherent on them. For you I will definitely make an effort, though.

Third, what general advice I can give, some which may be helpful and some which may not be so. We'll see whether this turns out long or short.

I don't know how much you know about fibromyalgia and how it works, or at least our current understanding of how it works. I've spent the past six years doing soem amount of personal research on the subject, and there are some wildly varying opinions on fibromyalgia out there, and I've narrowed things down to what has been true *in my experience* (which includes my fibromyalgia, my mother's, my oldest brother's, and the suspected future diagnoses of my other brother and sister). I think I have a pretty good understanding of it, but everyone's experience differs. You can feel free to dismiss any and all of this if you wish, or only parts of it. You know yourself best.

Fibromyalgia is one of those recently-discovered conditions (I believe research into it first began in the '80s). It was first (and long) suspected to be a rheumatic disease -- which is why the specialists for fibromyalgia tend to be rheumatologists, and you will sit in a waiting room next to people with arthritis and osteoperosis. In more recent years, research and studies have changed the "official" opinion to be that it is in fact a neurological condition -- we are, essentially, ultrasensitive to the pains that everyone experiences. NFRA describes it in a more scientific way: "Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system" (http://www.nfra.net/cause_of_fibromyalgia.php).

That explains the main problem -- the pain we experience -- but, unfortunately, no one really knows the cause of FM, or why it tends to have some very seemingly random symptoms (http://www.nfra.net/Symchart.htm lists them -- the first column -- and I myself was surprised that some of those symptoms that I regularly experience are in fact attributed to fibromyalgia), or why it tends to be concurrently diagnosed alongside some different conditions (arthritis and lupus are cited on NFRA's "diagnostic criteria" page).

(See, I find this interesting, having heard a number of different explanations for FMS from different doctors. This is the one that fits best in my own experience. It's sort of personally satisfying, having an explanation for it that makes sense in my head -- I never had a good grasp on science, and so little is known about FMS anyway. I figure you may want some introduction to it, if you've not had any before, before you go searching out good doctors -- I went through that when I was younger, and trying to understand the disease itself while trying to sort out the quack doctors wasn't fun.)

I'm sure you've already experienced a lot of what the medical explanation means in everyday life. What's great about it is how completely unpredictable it is, and while struggling to understand your own body and how it works, it can be hard for those around you to understand. You appear perfectly healthy -- you've no physical defects -- and some days you are more-or-less normal, but without explanation, the next day you may be near-immobilized due to pain. It's been called "the invisible disease," and for good reason: unless you make a point to groan and creak and act like you're a very arthritic ninety years old, no one is going to know you have what can be a very disabling condition. In a way, that can be the hardest thing to deal with.

I've been through varying treatments for fibromyalgia. I've had doctors suggest to me everything from a daily regimen of *cough syrup intake* as an analgesic (alternative medicine at its silliest -- though I suppose I should research that option further before I dismiss it as having no credence) to extreme body-building (as in, training under a woman who had so dedicated herself to the gym that she had very muscular pecs in place of what normally occupies that space on a woman's chest).

I can tell you what has not worked for me: any sort of NSAID, or non-steroidal anti-inflammatory drug. That I tried every popular NSAID on the market, gave them all ample time to work in my body (30 days is what's been quoted to me), and felt absolutely no effect on my pain level, is a large part of what led me to believe in the neurological explanation of FMS over the rheumatoidal one).

What has worked: regular exercise. I don't mean the extreme sort my first rheumatologist tried to get me to do. I do weightlifting now (when I'm a good girl and actually make it to the gym, that is), but that doesn't mean I do what the hyoog muscle-bound men there do -- I had to work months to build myself up to being able to pull 30 pounds on a lateral pull machine. People laughed at me when they saw me *remove all the weights from the machine* and still struggle to do 2-3 sets of 8-10 reps. But, thanks to a physical therapy program, I kept at it (along with other weightlifting exercises) and improved, and it has greatly affected the amount of pain I feel in my upper body. A good amount of our pain stems from our muscles being underdeveloped (because it hurts us more to exercise than it hurts the normal person, so we stop earlier, so our muscles don't develop as much, so it hurts us more, etc. ... it's somewhat cyclical).

So what I suggest for you in that regard is, for now, to find something that you can do that 1) is easy and 2) you can build up as you become stronger (and you will, if you keep at it). Weight lifting, warm water pool exercises, walking/jogging, even just certain sorts of stretches (I've found some effective ones at http://www.netfit.co.uk) are all good in this regard.

Of course, talking with a doctor will be a big help in deciding what is best for you, which is why I recommend you get into a physical therapy program once you find a good insurance (something I'm struggling with at the moment myself).

For me: I had terrible migraines, and eventually had to see a neurologist for them -- my diagnosis was, verbatim: "You have a very long neck," and my neck muscles were grossly underdeveloped, and the resulting pain from holding up my head would radiate up into my head and give me those terrible migraines. He put me on a physical therapy program, which my insurance fortunately covered (a $5 copay for each visit was very nice), and I had a couple different therapists work with me to build some upper-body strength -- and *it worked.* When you build muscle in your trouble spots, a lot of the pain goes away. I can think of a couple times in the last year that I've had a bad migraine.

Obviously you not be totally familiar with how to properly use weight lifting equipment, or whatever else you decide to do -- but that's what the therapist is for. They should teach you how to do the exercises you need to do, and help you do them for awhile, and then, before releasing you, give you a personal regimen to keep up with so that you can continue to improve.

Anyway, exercise is an indespensible part of helping alleviate some of the FMS pain -- though it hurts initially, the long-term results are worth it -- that is often overlooked in lieu of medication.

And that's not to say medication is bad. I have a sort of antipathy toward medication in general, but I realize for some things, medicine is necessary. I myself have two prescriptions to help with my FMS: Trazodone (generic for Desyrel) and Cyclobenzaprine (generic for Flexeril). The first is actually an antidepressant, but I use it as a sleep aid -- it allows me more restful sleep and prevents me from waking up every hour, as I tend to do otherwise. That improved sleep results in a diminished pain level the next day. The latter is a muscle relaxant which I've only discovered within the last year or two, and it has been a lifesaver. I used to have muscle spasms at random times throughout the day, but the Cyclobenzaprine almost completely eliminates them when I take it -- and also eliminates the muscle tenseness I experience particularly in my neck/shoulder area, as well as takes the edge off my daily pain.

Aside from those two, I just take Tylenol when I have particular bad pain, and try to tough it out. It's pretty difficult sometimes. In fact, my pain level grew so bad while I was in college that I had to come home. (Let's just say I overworked myself.) I was on Hydrocodone -- a prescription narcotic pain killer -- at the time, and even when I popped a pill the minute I woke up, and every four hours subsequently, I only had a bare minimum of functionality throughout the day, to speak nothing of being able to do *well* in my classes. Add onto that the very real risk of physical addiction to the narcotic, and I threw my hands up and said "it's too much" and came home, for the time being. Needless to say, I don't recommend dabbling in something so serious as narcotic medication unless it is absolutely necessary.

Some good news on the medication topic, though. I'm going to be getting onto a medical trial for Pregabalin. My mother has been on a different study of the same medicine for three years now (maybe longer -- I don't remember exactly), and it has helped her immensely. Before, we were living off Social Security Disability benefits ($400-$500 a month for both of us -- not the most comfortable income, but enough). When she got on the medicine, she was able to start working with some regularity again. She took up (don't laugh!) Avon, and within a year she was one of the top sellers in the district, and years later remains so. She wouldn't be able to keep up with it with the pain levels she had previous to this particular medication -- but she's doing very well comparatively now.

The study Mom joined in on was actually for something called diabetic neuropathy, I believe (and I probably remember wrong), but she was able to get in under "general pain"... now they're starting up a study of the same medication, but geared specifically toward studying its effect on fibromyalgia, and I should be getting on it.

Pregabalin, if you're curious, is a spinoff of Neurontin, a medication already out on the market. I know I've successfully Googled Pregabalin before (perhaps also under its commercial name Lyrica), so there's information out there if you want to look it up. Mom, having taken Neurontin before, calls this medicine the "super Neurontin" -- multiple times more effective than its basis drug.

My rheumatologist, Dr. Silver (who either heads or is involved with the study) told me "rumors are that it will come out on the market early 2005" -- but then, they said the same of "early 2003," too, so I don't trust him on that quite yet. ;) I'll likely be on the study, regardless, so that's actually irrelevant for me -- but hopefully relevant for you. And, in fact, I think I've heard of studies on Pregabalin being carried out somewhere on the east coast... I can ask my doctor about that for you, if you'd like. To my knowledge, the medication is free if you're on the study, regardless of insurance coverage. I suspect that would be a good thing for you (and me, since I'll be between insurance companies myself soon).

More generally, not to do with treatments of the physical pain but instead dealing with the more mental/emotional aspects of FMS... stay strong, friend. I've been on my own roller coaster because of this disease in the last two years (including almost failing high school, and then actually having to leave college), and I can say what has helped me *most* has been the support from those who love me. TOMatthew has been there for me to talk to every day, and I will never ever be able to come close to giving him enough thanks for that. My mother, while I have my share of friction with her, has nevertheless been nothing but supportive of me. Two of my best friends (sisters -- Kim and Patricia -- and, in fact, their entire family) have loved me no matter what, and been available for understanding when I need it, even though neither of them has the disease themselves -- but they don't get upset with me when I have to cancel a date just because I'm not feeling well that day, and they help me more than I can say. Finding a good church and getting involved in a solid youth group with youth pastor who encouraged a lot of growth my last two years of high school was also a great help.

Basically, find the people who love you and stick with them. Don't let go of them. Find those who will stay by your side even if you aren't your healthiest, and love them as much as they love you (something I've no doubt you will have no problem with). Even if they don't really understand the ins and outs if the disease itself, they will be your strength for you when you can't find any in yourself. And, during the few times they fail, you know you always have God.

Learn not to be disappointed in yourself. Learn your limits. I have struggled with physical limits myself for years now -- I want to accomplish so much more than I *can.* I wanted to be the tech and copy editor of the newspaper in high school, and run a website, and be part of the orchestra, and do the work for multiple AP classes, and be part of my church's high school ministry team all at once, but I ended up having to drop a few of those things, and settle for some C's instead of A's in a few classes. I want to double-major in art and lingustics with a minor in Spanish, and finish in four years at that, all at a quality school whose art major is very intensive (132 units alone, much less the double major with minor!) -- I know my brain has the capacity for it -- but my health just does not allow it. And I just got done spending a month at home, crying and sulking and being generally depressed over it, but now I'm re-learning what I already knew before: I have limitations that the normal person does not have, and though people don't really understand it, I have to go at things a lot slower than they do. I can't study so many hours a day -- my neck will kill me the next day from bending over a book. I can't walk long distances to my classes multiple times every day (as I had to with my schedule). And some of the strangest things -- I can't sit in a chair normally; having my legs bent at perfectly proper 90-degree angles hurts too much; I have to stretch them out, or pull my knees up to my chin, or sit crosslegged, anything but the "proper" way.

And I've had to teach myself to be happy with that. I can't be an overachiever. I have to settle for less if I want to accomplish anything at all. And that's OK. I can't be normal, and I have to stop trying to convince myself that I can be. "Shoot for the moon; you may not reach it but you'll land among the stars" works great for normal people, but you know, if I want to get to the moon, I have to shoot for "somewhere outside the stratosphere" first, and then build up from there. It's frustrating at times, but I'm happy with it.

And learning to be happy is what really matters.

After all, looking back... I may have struggled to meet the minimum grades required to graduate during my last year of high school, but I had plenty of good things, too. Awesome friends. I went to Prom (solo -- I was the one who stood at the end of the group pictures and made the boy-girl order symmetrical!) and had a blast. Same with Grad Nite at Disneyland. I spent a lot of time with the people most important to me, including having TOMatt visit me during the week of graduation. And you know, I sacrificed some time I could have spent on schoolwork to do all that -- but in the end, I was happier with a C- in Physics and a lot of invaluable memories with a bunch of people I really care about.

You have some good friends, dearest Kelly. Turn to them for the help you need when you need it. Maybe they can't tell you what to do to get rid of the physical pain, but they will be there for you during the emotional downs, and that is what matters. They love you, and you love them, and that makes you happy, no? Hold on tightly to that. It's a source of strength you can't even begin to measure, even in the absence of physical strength.

I ramble, don't I? A lot of it is "me, me, me," but, well... I can only speak from my experience. I hope *some* of it helps. I'm hoping that the length itself increases the possibility of finding some bit of aid in there somewhere. ;)

As I said, I'm here if you want to talk, and I love you lots. I never got to know you *well* -- but I still care a lot, and I promise I'll be here to talk to if you want.

If you're confused on anything I said (that's likely -- I'm not always very coherent!), ask me to clarify... otherwise, I really hope you find some good help.

Another big *HUG*, and lots of love. Don't let yourself get down for too long. Remember you have a lot of people who love you a whole lot, and we're here not only for support during the worse times, but to have fun being silly with during the better times! ;)

Riamanda

P.S. This is so unnaturally long that I'm not rereading it before I post. Here's to hoping for no embarrassing typos or anything...