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Event_Moderator Welcome to WebMD LIVE! Our guest today is Miryam Ehrlich Williamson. The topic is "What You Can Do About Chronic Pain and Fatigue." Miryam Ehrlich Williamson is a technical journalist and a charter member of the online Fibromyalgia Discussion Group. She was diagnosed with fibromyalgia in 1993. She is the author of Fibromyalgia: A Comprehensive Approach and The Fibromyalgia Relief Book.
lucycat1_WebMD How do you deal with daily pain?
Event_Speaker That's a good question. There are many facets to dealing with daily pain. Chief among them is what to do to combat pain in the first place. If meds are part of your regimen, then it's important to use them to stay ahead of the pain rather than wait until the pain is really terrible. It's also important to understand the role of pain in FM. Usually pain tells us something is being broken or torn or is infected. That's not so with FM. Much of our pain is because of a chemical imbalance that exaggerates pain in our brains. So it's helpful to remember that and not let the pain get us more tense and upset, because that makes the pain even worse. /next
shamrock2_WebMD What is the difference between CFIDS and FMS?
Event_Speaker This is my opinion only. It is not shared by everyone in the FM/CFIDS communities. I think the two are different disorders with different causes. FM is a central nervous system disorder involving certain brain chemicals that are out of balance in us. CFIDS I believe has its origins in some form of infection. The symptoms are quite similar. In FM usually the primary symptom is pain; in CFIDS the primary symptom is fatigue. But they overlap greatly. I think the causes are different and from what I've learned in talking with people with one or the other, the most useful treatments are different, too. I can usually tell which the person who has been given a double diagnosis (often by a doctor who doesn't want to express a judgment about which it is) by asking when she feels the worst. Typically, but not always, the person with FM feels worst first thing in the morning and the person with CFIDS feels worse as the day goes on.
KitzKatz_WebMD What is the best way to get others to understand your pain?
Event_Speaker No one is ever going to fully understand your pain, I'm sorry to say. The best you can hope for is that they'll understand you _are_ in pain and give you the understanding and support you need and deserve. I think the best way to achieve that is to try to explain calmly and clearly what is the situation, without soliciting pity and without giving more details than you must to make them understand.
hurd2_WebMD If FM is a disorder involving brain chemicals, why is it so difficult to diagnose?
Event_Speaker It's difficult to diagnose for a couple of reasons. First, it's hard or impossible to get at those chemicals. Nobody wants to have a hole drilled in her brain so the doctor can draw off the chemicals to analyze them. The best doctors can do to assess most of the chemicals is to look for their breakdown products in the blood or urine. Second, FM doesn't fit the classical medical model that all doctors are taught. In that model there is a lesion of some sort -- something that can be shown is wrong in X-rays, lab tests, or physical exam. The model says the doctor finds what's wrong and applies a medicine or procedure to fix it. FM isn't like that. Lab tests for the most part don't show much, if anything, and there's no way to fix it completely. Doctors tend to hate it because they can't prove its existence, and because they don't know how to fix it.
lmmiller_MSN How can you fight fatigue?
Event_Speaker In three words: sleep, nutrition, and exercise. First comes good sleep hygiene so you can achieve a good night's sleep. (I think I can hear you groaning. Please believe me; it's possible to do that.) Second, excellent nutrition will provide you with energy that you're currently probably lacking. Third, believe it or not, gentle regular exercise will give you more energy, not less.
lucycat1_WebMD Does the weather effect FMS pain
Event_Speaker There are studies that say it does not, and studies that say it does. In my case it does not, except if I let myself get cold (I live in a cold climate.) I think the people who most mind humidity and changes in climatic conditions are probably dealing with yeast overgrowth as well as FM.
JoanneBrayden_WebMD what do you know about SAM-e and pain management for FMS/CFIDS?
Event_Speaker I don't know a lot about SAM-e, but I do know some people who find it quite helpful and I don't know of any bad side effects. I'd say if you're inclined to try it, it's worth trying it. About pain management in general -- well, I've written two books . There's too much to say about it for a chat.
WendyJM1_WebMD What is your opinion on guaifenesin therapy?
Event_Speaker Like many other things, it has helped some. I'm one of them, although I didn't have the kinds of experiences that Dr. St. Amand predicts. I wasn't religious about salicylates, either, because the salicylate thing wasn't known about when I started it. I've stopped it now because it no longer seems to make any difference, but I took it for about five years.
tutly_WebMD why in your book do you say this is not a progressive disease and what is the difference between a syndrome and disease
Event_Speaker A syndrome is a collection of symptoms. Doctors can use the syndrome name to talk about it and understand each other. A disease has a clearly identified cause and course, and usually a clearly defined treatment and predictable outcome. I say FM is not progressive because it need not get worse over time. I've had it since I was 5 -- 58 years ago. If it were progressive, I should be in a wheelchair by now. With good, careful management, FM can get better -- I'm not saying cured, but better. It gets worse if we let it take over our lives.
Redhead124_WebMD Are B-12 INJECTIONS helpful for Chronic Fatigue?
Event_Speaker As I understand it B-12 injections are helpful for people who lack energy, but I think it's most effective when they lack energy because of anemia. I'm not sure about their helpfulness in CFIDS. It's probably like most other treatments for both FM and CFIDS; different things help different people.
junec_WebMD How are naturopaths treating FM - anything new or different?
Event_Speaker The naturopaths I know of pay much more attention to issues of nutrition and life style than most conventional MDs. Frankly, I like this approach because I think most of the answers to FM lie in lifestyle modifications rather than in prescription drugs. But I'm not aware of anything new or different in naturopathy. Just old fashioned care with food intake, rest, and exercise.
jakoz_WebMD If you had to pick one thing that helped you the most, what would it be?
Event_Speaker I'm lauging as I answer this because when I was writing The Fibromyalgia Relief Book there were about four places where, in the first draft, I said, "Now this really was a turning point." I think if I had to pick one thing it would be fixing my sleep. I use a combination of techniques and non-medicinal substances to help me to sleep. I set it all out in Chapter 5 of the Relief Book and on my web site, at www.mwilliamson.com, which I invite you to visit. You can also send me email from there if you wish to follow up on anything I've said here.
maggiemich_WebMD What do you think of biofeedback or Naet treatments on allergies?
Event_Speaker I think biofeedback is excellent for people who can use the technique. Not everyone can, but it's non-invasive and can't harm you, so if you have the opportunity, I would say to go for it. I'm drawing a blank on Naet treatments. Sorry.
shamrock2_WebMD What is the best way to seek out a doctor who can correctly diagnosis and treat for CFIDS or FM?
Event_Speaker Word of mouth is good. Ask people in a local support group.
lmmiller_MSN I was diagnosed with FMS in 1990 and the last 3 yrs I have gotten much worse. I have had surgeries that hasn't helped the FMS. I exercise, eat correct, and have meds to help me sleep. So why am I feeling worse every year.
Event_Speaker I'd still look critically at all three: do you wake up feeling rested and refreshed and ready to start the day? If not, you're not sleeping well. Is your diet the right one for you, or are you following some generic diet that "experts" propose. Specifically, if you are insulin resistant (and you don't have to be diabetic to be insulin resistant) then the American Dietetic Assn's high carbohydrate diet is keeping you from having the energy you deserve, and may be making you be overweight. What kind of exercise are you doing? Are you pushing too hard? Are you guarding some sore places when you exercise and thereby making your pain worse? These are all things I address in the 'Fibromyalgia Relief Book.' If I can do anything to help you keep from being discouraged while you analyze what I've suggested, I'll be proud to be allowed to help you.
mermaids_WebMD Any experience with nuerontin?
Event_Speaker Not personally. Drugs are not the answer for me. I do know people who have found it helpful, though.
Daveanjoz_WebMD Do you think Reiki and/or massage help long term relief?
Event_Speaker Not long-term, but certainly short term. For long term gains I'd recommend the Alexander Technique of body mechanics. It teaches you how to avoid "guarding" sore places and stressing others. It's one of the four things that changed my life that I mentioned earlier. And you learn the technique; you don't have to keep going back for the rest of your life.
Borene1_WebMD Do you believe in using whatever kind of meds control the pain in fibro and CFS?
Event_Speaker yes, I do, at least until you can get your pain under control so you can think straight to formulate a plan of action. I have no patience with those who say you'll become addicted if you take opioid drugs for severe pain. The chances of that happening are less than one in a thousand.
elruth_WebMD Are there any specific foods you avoid?
Event_Speaker Anything with sugar or aspartame. I am one of the 25% of us who are insulin resistant (the subject of my next book, by the way) so I avoid most carbohydrates and all starches and sugars. Everyone I know who has cut out sugar (and caffeine) has come back to thank me for that advice.
tutly_WebMD Why is this consider a mental illness?
WendyJM1_WebMD What do you think of the issue of reactive hypoglycemia in FM
Event_Speaker It's the reason I suggest that people skip the sugar. It's a real problem for many people with FM -- maybe all, I don't know. There is a page on hypoglycemia on my web site that I recommend you see.
elruth_WebMD Do you recommend any type of special exercises? I also have CFIDS, so get exhausted if I exercise.
Event_Speaker Walk. If you can only walk five minutes at a time, walk five minutes at a time. If you can do that four times during the day, you will have got your 20 minutes of exercise. You don't have to get sweaty or out of breath, you have only not to let yourself be sedentary all of the time. I once helped a woman who had been bedridden for six years start exercising by suggesting that when she got up to go to the bathroom she walk there and back twice instead of once, thereby doubling her daily exercise. Six weeks later she was not only out of bed, she was out in her garden, taking photos.
elruth_WebMD Do you feel there is a genetic predisposition re: getting fibro?
Event_Speaker Yes, indeed. That has been demonstrated. Dr. Muhammad Yunus is studying that now. It's not straight inheritance like blue eyes or brown hair, but it does tend to run in families. On the other hand, I have three biological children, all adults, and none of them has FM. So it's not a direct inheritance.
patgill_WebMD I feel I have both FM and depression. Will seeing a psyciatrist help?
Event_Speaker It might help. Psychiatrists these days are often the most knowledgeable about prescribing mood-altering drugs. If you have depression independent of FM, help with that depression might well improve your FM. Don't let yourself think it's a sign of weakness or admission of mental illness to see a psychiatrist. It's part of taking care of yourself.
hurd2_WebMD Have you seen any correlation between FM and Hep C?
Event_Speaker I know of no correlation studies. I know some people who have both, and the Hep C surely makes FM worse. But I don't think one causes the other.
elruth_WebMD Is it possible to get a good night's sleep without taking any anti depressants or muscle relaxants or anti anxiety meds?
Event_Speaker Well, I don't take any of those things, unless you consider 5-htp an anti-depressant, which I don't. And most nights I get about six hours of deep sleep, which is enough for me. That's not to say you shouldn't take any of those drugs, only that I'm not sure they're necessary for everyone.
Borene1_WebMD Do you find many people have FM in their hands? Mine are so painful.
Event_Speaker When I had my first baby, years before my diagnosis but surely while I had FM, my hands were so bad that I had to use duct tape on her diapers, I couldn't handle pins. It's quite common to have hand pain. I hope you take pains to keep your hands warm (I'm typing with fingerless gloves on right now.) Improving your circulation may help, too -- which may mean exercise. If you dress warmly, you may be able to keep your hands warmer and more comfortable. If you're doing a lot of typing, look into typing ergonomics and see if you can improve the way you_use_your hands.
jakoz_WebMD When you get a new symptom, what criteria do you use to decide if its the FM or some other illness?
Event_Speaker If the symptom is something that would cause me to call the doctor if I didn't have FM, I call the doctor. There's a real danger that people with FM brush off new symptoms by saying, "It's only FM," when in fact it is something else. I'd rather my doctor think I call too often than too rarely.
Event_Moderator We've reached the end of our show. I'm sorry I couldn't get to all the great questions. Thank you, Miryam, for spending this time with us today! Miryam Ehrlich Williamson is the author of 'Fibromyalgia: A Comprehensive Approach' and 'The Fibromyalgia Relief Book.'
Event_Speaker You're quite welcome. It was a pleasure.
Event_Moderator Thanks for joining, everyone!
Event_Speaker Goodbye. You were a great group and the questions were excellent.
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