Summary-line: 2-May andrea@sdd.hp.com #Fibromyalgia *** EOOH *** Return-Path: Date: Thu, 2 May 91 11:53:30 -0700 From: Andrea Frankel To: immune@weber.ucsd.edu Subject: Fibromyalgia Here's something I posted to sci.med a while back, which several people said helped them. ------------------------------ snip snip snip ------------------------ Just wanted to add my $0.02 worth, here... It is very frustrating to have a chronic problem for which there is no known cure, and for which the mechanism is only starting to be revealed through research. Part of my adjustment to living with fibromyalgia was learning to accept and live with this unknown. I am still interested in finding out about current medical research in this area and try to keep up to date, but at the same time I'm not holding my breath. I.e., I take positive steps to do what can be done, and learn to accept what I cannot change. (Yes, the "Serenity Prayer" comes in mighty handy here...) Clutching at every crackpot explanation that arises is not helpful in any way to my efforts to live a happy and productive life in spite of my fibromyalgia. Nor is "doctor shopping", searching futilely for someone who will give you a definite answer when there is none to be found (yet). Both actually are impediments to acceptance and serenity. Living with a certain level of mystery and ambiguity is a necessary skill to learn. I offer some things that have helped keep me functional, and keep the pain down to a manageable level: 1. GETTING A GOOD NIGHT'S SLEEP EVERY NIGHT. I can't stress this enough. You may need to try a number of different medications before finding the one that helps; Flexeril at bedtime works for me. I had a recent lesson in the importance of sleep: having caught the cold that is making the rounds here, I spent several nights in a row waking myself up with coughing fits. After three days, I woke up with the all-over stiffness, pain, debilitating weakness, and fatigue that is the beginning (for me) of an acute flare-up. Fortunately, I was able to take a day off and recover over the weekend, especially after my doctor wrote me a prescription for Tessalon, which is a cough suppressant in a pill (handy for those of us who react to artificial sweeteners or colorings, and can't handle sugar). 2. GETTING REGULAR EXERCISE. Both aerobic (gentle walking is often enough) and specific strengthening exercises prescribed by a physical therapist have been of great help in conditioning the muscles so that they don't hurt as much. The "tender points" flare up less often, there are fewer of them, and they can be massaged out more easily since I've become religious about my back exercises. 3. REGULAR BODYWORK. A combination of sports massage and trigger point therapy (a la Travell & Simons, or in the mode of Bonnie Pruden's "Pain Erasure") every week or two keeps the tender points from escalating, eventually gets rid of some of the tender points altogether, and provides several days of relief. This is one area where you do need to shop around, as therapists have widely varying levels of skill and sensitivity, and the last thing you need is someone bulldozing you when you're in great pain. Ask around at Sports Medicine clinics to find a good sports massage therapist. Avoid Rolfing, Postural Integration, Bindegewebbsmassage or anyone advertising "deep tissue work". Steady pressure on the points helps, deep pulling and pushing only makes things worse. Straight Swedish massage is relaxing, but not really of much therapeutic help for this. Shiatzu is good, as a great many of the classic shiatzu points coincide with the most common fibromyalgia tender points; just be sure to warn your therapist that you are unusually sensitive to pain on those points due to the FM. 4. PACE YOURSELF. You can do more and have more productive hours in a week by slowly increasing your activity level to a point where you can maintain it on a daily basis, rather than overexerting to the point of exhaustion one day and then being out of commission for several days after. This works. It does require some flexibility and understanding on the part of your employer, but so far I've had good luck. 5. MOIST HEAT. Jacuzzi, long hot showers (except we're in a drought [sigh]), and that wonder of modern technology, the Thermophore heating pad (which appears to pull moisture out of the air or something - it provides moist heat without having any foam pad to moisten). Moist heat helps most with the achy diffuse type of pain. 6. ICE. Helps most with acute flareups (especially around joints, for some reason), and is a good idea after exercising an area (but never before exercising). 7. EMOTIONAL SUPPORT. If your spouse or significant other can learn how to support you without nagging or enabling you (i.e., fostering a "can do" attitude rather than a "poor me" attitude), you have a good chance of being able to cope. The stress and frustration of not having anyone understand what you're going through only exacerbates the pain and fatigue. Support groups can be helpful; I have found that my 12-step group has helped me immeasurably in dealing with life with fibromyalgia, even though that is not the focus of those meetings. There is a small book on the 12 Steps and Chronic Illness, that I also recommend. (And keep on saying that Serenity Prayer...) 8. STAY INFORMED. Fear and ignorance can make this condition seem worse than it really is! The following organizatiions have great newsletters where you can get inspiration from other's writing, reprints of articles reviewing books, pamphlets on coping skills, and so forth. NATIONAL CHRONIC PAIN OUTREACH ASSOCIATION 7979 Old Georgetown Road, Suite 100 Bethesda MD 20814-2429. Fibromyalgia Network 7001 School House Lane Bakersfield, CA 93309 FM NETWORK reports on recent conferences, including some interesting developments in immunology and FM, and studies on the relationship between CFIDS or CFS and fibromyalgia (there is a great deal of overlap in symptomology; it's not clear whether they are really the same illness or whether patients are being misclassified, but work is definitely going on in this area). Central Ohio Fibrositis Association Riverside Methodist Hospitals Foundation, Inc. 3545 Olentangy River Road Columbus, OH 43214 9. ACUPUNCTURE: I found this to be of no help with respect to easing the pain of tender points, but it has been very helpful in increasing my overall energy level, helping me to feel like a healthy person in a less-than-cooperative body, rather than someone who is always ill. Most of the certified acupuncturists are now using sterile, disposable, single-use needles, which removes much of the worry (and my local blood bank continues to accept my donations). Word of mouth referrals are preferred, but if you are looking in a newspaper or phone book, be sure to ask them how many years of training they have and what level of certification they have. 10. ANTI-INFLAMMATORIES: There have been some studies that show that NSAIDs do not help FM patients, but my experience is that they do to some extent. I have been on Motrin, and then Clinoril, twice a day for the last couple of years, and when I experiment with not taking them, I can see increasing overall stiffness and pain after about a week. In particular, taking one at dinner time or just before bed (with a little food - easier on the stomach) makes a big difference in my morning stiffness, and whether my feet hurt for a few minutes or a couple hours after I get out of bed. Also, I get less post-exercise soreness and stiffness when I'm taking NSAIDs regularly, which obviously makes it easier to stick to an exercise program. What NSAIDs will not do is decrease the painfulness of an acute flare-up, or modulate the sharp pain of a tender point. Thanks for giving me this opportunity to help. It makes my day when something I share makes life a little better for others! Andrea Frankel, Hewlett Packard, San Diego Technical Graphics Div., R&D Lab "wake now! Discover that you are the song that the morning brings..." ______________________________________________________________________________ Internet : andrea@sdd.hp.com (or andrea%hp-sdd@nosc.mil or @ucsd.edu) UUCP : {hplabs|nosc|hpfcla|ucsd}!hp-sdd!andrea CSNET : andrea%hp-sdd@hplabs.csnet USnail : 16399 W. Bernardo Drive - Mailstop 61U65, San Diego CA 92127-1899 Voice : (619) 592-4664