Managing Fibromyalgia
online conference transcript

Miryam Williamson, author of The Fibromyalgia Relief Book and Fibromyalgia: A Comprehensive Approach joined us to discuss the symptoms of fibromyalgia like difficulty sleeping, suffering from muscular and nerve pain all the time, and costochondritis. Ms. Williamson shared what it's like living with fibromyalgia, how to manage fibromyalgia and the chronic pain that comes with it. She also gave specific ideas for relieving the Fibromyalgia symptoms and for coping with the depression and relationship problems that often accompany a chronic illness.

David is the HealthyPlace.com moderator.

The people in green are audience members.

David: Good Evening. I'm David Roberts. I'm the moderator for tonight's conference. I want to welcome everyone to HealthyPlace.com. Our topic tonight is "Managing Fibromyalgia." Our guest is Miryam Ehrlich Williamson, FMS patient and author of The Fibromyalgia Relief Book and Fibromyalgia: A Comprehensive Approach.

Good evening, Ms. Williamson and welcome to HealthyPlace.com. We appreciate you being our guest tonight. On your site, you say, "I am sleeping well almost every night, and relatively pain-free (at least I don't have enough pain to complain about, and it doesn't keep me from doing anything I want to do, including sleep). I do have hyper-mobile shoulders and knees that hurt sometimes, and a touch of costochondritis, but I rarely have the generalized achiness and shooting pains that used to be a constant part of my life. I have been in remission from significant pain since early May, 1995." What was it like for you in the beginning?

Miryam Williamson: The beginning, for me, was when I was 5. It started with an illness that resembled rheumatic fever and baffled the doctor. It continued with pains in my legs that the doctor said were "growing pains." I grew to late middle age thinking it was normal to be in pain all the time.

David: Can you describe the type and intensity of the pain and also the other Fibromyalgia symptoms that you experienced?

Miryam Williamson: I think I've experienced virtually every kind of pain a person with Fibromyalgia can have -- all over my body, muscular and nerve pain, intensities up to 9 or 10 at times. Other symptoms included all the usual -- IBS (Irritable Bowel Syndrome), costochondritis (pain where the ribs meet the breastbone) -- you name it, I've had it. But now the worst pain I experience is a 4 or 5, and that's pretty rare. I'm happy to have found the way to manage my FM.

David: I'm sure it was very difficult, and that's probably a big understatement. Before we get into some of the medical issues, I'm wondering how Fibromyalgia impacted your life.

Miryam Williamson: It impacted my life in lots of ways. It cost me two marriages (I've been married now for 25 years to a man who understands that I have some limitations). It kept me from doing some things I'd have liked to be able to do. But mostly, I think it made me more understanding and patient with others who have problems of any kind. The past 7 years, since I got my diagnosis, have been a rich spiritual trip for me. I have no regrets about having FM.

David: You mentioned that the Fibromyalgia developed at around age 5. Just so our audience can get an idea of how long you've been living with Fibromyalgia, can you tell us how old you are now?

Miryam Williamson: Sure. I'll be 65 in April. I was diagnosed in 1993, at the age of 57.

David: You developed a regimen for managing Fibromyalgia that worked best for you. How did you arrive at that solution?

Miryam Williamson: Long story. When I was diagnosed, I did what I always do when something threatens me: I decided to learn all I could about it. I looked for books on Fibromyalgia and found none. I decided I was meant to write a book for FM beginners, since I write for my living. In the process of researching the book (that's Fibromyalgia: A Comprehensive Approach) I learned what experts thought was the cause of Fibromyalgia and decided to try to mitigate the effects of that cause.

The cause everyone was thinking about, at that time, was dysfunctional sleep. I'd treated myself for insomnia in the 1980s with L-tryptophan, which had been taken off the market because a bad batch had caused some illness and a few deaths. I set out to find a substitute for L-tryptophan, and did. That fixed my sleep pretty well, but there is a lot more to what I do than just achieve good sleep. There's nutrition, exercise, and stress management, too.

David: One of the things you point out is that "proper" nutrition is very important. In the context of caring for yourself, what is "proper nutrition?"

Miryam Williamson: For me, proper nutrition means avoiding sugars and starches and going very easy on the carbohydrates. It means as little processed food as possible, no artificial sweeteners, and nutritional supplements because I was malnourished as a child and bear the scars of that for life.

David: What does that type of diet accomplish in terms of helping to relieve the symptoms of Fibromyalgia?

Miryam Williamson: A good deal of nerve pain can be associated with B-complex deficiencies. Carpal tunnel syndrome is often caused by a deficiency in B-6, for example. Getting adequate B vitamins brings my nerve (shooting) pain down to a tolerable level. Avoiding sugars and starches keeps me from hypoglycemic symptoms. Calcium and magnesium supplements relieve muscle spasms and nerve pain. Eating lots of fibrous vegetables relieves IBS. Also, avoiding sugars and starches keeps the yeast population under control. A lot of people with FM have problems related to yeast overgrowth.

David: Miryam also mentioned that she takes nutritional supplements. Rather than having her run through the entire list now, here is a link to see what she is taking. What 2 or 3 nutritional supplements would you say are most important to you?

Miryam Williamson: B-complex, calcium/magnesium, and Vitamin D (it helps avoid wintertime depression aka Seasonal Affective Disorder or SAD and helps with the absorption of calcium).

David: I think, and I just quickly counted, that you are taking about 13-15 supplements everyday. I imagine that it might get expensive to care for yourself.

Miryam Williamson: Yes, it is expensive, but I'd rather spend my money on good nutrition than on doctors and prescription medicines.

David: One of the tough parts of having FMS is having difficulty sleeping. How do you deal with that?

Miryam Williamson: Please understand that I don't mean to prescribe anything when I say this. I take 5-htp for sleep, which is what tryptophan breaks down into in the body before it turns into serotonin. One of the hallmarks of FM is a deficiency in serotonin, which accounts for poor sleep, the fact that about 25% of us are chronically depressed, and the carbohydrate cravings so many of us experience. But as important as 5-htp is, my bedtime routine is also very important: in bed at the same time each night (except tonight -- it's past my bedtime already), an hour's winding down before bed, and out of bed at the same time each morning, regardless of the quality of my sleep.

David: We have lots of questions coming in from the audience, Miryam. Let's get to a few of those and then I want to talk to you about how you deal with the chronic pain. Here's the first question:

pattielann: Sleep, or lack thereof, seems to be my number one enemy. I tried getting off nightly Flexeril, but it increased my symptoms terribly. Then the doc prescribed Ambien - which made things worse. Can you offer suggestions for what you use for sleep, if anything?

Miryam Williamson: Let me tell you what others are doing with varying degrees of success: Some people are helped by tiny doses of melatonin -- not the 3 mg tablets that are commonly sold. They are not meant for sleep. About 1/10th of that dose is often useful for sleep. Some people find success with 25mg of diphenhydramine (the brand name is Benadryl). I already mentioned 5-htp, which used to be a prescription item but is now sold over the counter. There are herbal preparations combining hops, valerian root, and passion flower that some find very effective. There's a tea called Sandman tea that is very calming.

There are many non-drug things that can help. It's a matter of trying patiently until you find your solution, but the process of getting yourself ready for sleep is at least as important as what you take. You're right to go after your sleep problem, though. Sleep deprivation is the most terrible torture known to human beings. If you can't sleep, you can't manage your FM.

David: I'm getting some questions about the nutritional supplements you mentioned and those on your webpage. Can those be purchased at any natural health food store or vitamin/supplement shop?

Miryam Williamson: Yes. Everything I take I buy at a regular health food store or vitamin shop. There's nothing exotic there.

sharon123: Could you talk some about "a disorder of brain chemicals" as a cause of FMS. Do you think FMS is from a chemical imbalance - brain chemicals, neurotransmitters?

Miryam Williamson: There is surely an imbalance in brain chemicals as part of FM. When one hormone is insufficient or overabundant it knocks the rest of them out of balance, too. I don't know whether that chemical imbalance causes the symptoms of Fibromyalgia or whether the imbalance is caused by FM. Nobody knows that yet, but we do know that working on some of those imbalances helps make us feel better. For example, it is known that when you are deficient in serotonin you also have too much of the hormone that signals pain. So, in fact, if you're low in serotonin you feel pain more severely than a person who has a normal amount.

David: One thing, and I think this is important to mention: if you are taking antidepressants or other medications, it is IMPORTANT to talk with your doctor about any other medications or supplements that you are considering taking. Some mixtures can cause very bad reactions. Here's the next question:

micah: Was there one main thing that helped you manage fibromyalgia the best, Miryam?

Miryam Williamson: First I want to agree with what David said about checking with your doctor if you're taking antidepressants or other meds. For example, 5-htp doesn't go well with SSRIs like Prozac and Luvox.

To answer micah: The main thing that helped me was learning to sleep, and I really mean I had to learn to sleep. I didn't know, until a couple of years ago, what a real night's sleep was like. When I learned how to sleep I started feeling much better.

duciebug: Does fibro make it difficult to speak or get your thoughts across at times?

Miryam Williamson: Sometimes it does, but in my case that's related to sleep, too. When you don't sleep you produce more immune system cells called cytokines. Those cytokines interfere with a brain chemical called acetylcholine, which is related to thinking and remembering. So yes, when I'm not sleeping well (which still happens occasionally) I forget what I'm saying halfway through a sentence, and that sort of thing.

David: Since we have a lot of people here tonight coping with Fibromyalgia, it might be helpful if you have found something that helped relieve the symptoms and/or the chronic pain, please send me one or two short sentences and I'll post them as we go along. By sharing, we can help each other.

Miryam, you mentioned that exercise was very important to helping you. What kind of exercise, how much, and what impact does it have?

Miryam Williamson: I honestly don't know how I'd cope if I didn't exercise almost every day. I do 20 minutes of no-impact aerobics on an exercise machine (it's called a CardioGlide, if you've ever seen that on TV). I do this six days a week, and three days a week I also do some stretching and strengthening exercises on the floor. The stretches keep me from getting overly stiff. The aerobics provide me with pain-killing endorphins. You know about the runner's high? That's from endorphins, which is the brain's own morphine. Exercise keeps my pain levels down. It also keeps me from being depressed, which would be a big problem for me if I didn't exercise.

David: Here are some helpful solutions from some of the audience members:

RhodeIslandBorn: I found that swimming in warm water pools helped my fibromyalgia the most.

Songofjoy: I have to agree with Miryam. Sleeping well is crucial for me to have painless days. I also find a cup or two of herbal tea before bed works wonderfully.

suzieqt5: Acidophilus really helps with the IBS.

David: A couple of site notes, then we'll continue the questions:
Here's the link to the HealthyPlace.com Chronic Pain Community. Please sign up for the mail list at the of the page. We send out a weekly newsletter so you can keep up with events like this.

We are looking for journalers in the HealthyPlace.com Chronic Pain Community to keep online diaries of their experiences. If you are interested in doing that, here is the signup link.

Miryam Ehrlich Williamson's website is here: http://www.mwilliamson.com

Also, if you haven't been to any of our Chronic Pain support groups, I encourage you to join in. We have trained hosts who run each group. They do a great job and we get lots of email from our visitors talking about what a great experience it is. Here is the schedule for the Chronic Pain Support Groups.

Of course, we have hosted support groups on our site for many other topics. Here is the schedule of all support groups at HealthyPlace.com.

Here's the next question, Miryam:

suzieqt5: My side hurts where you said - by the ribs. Could you tell me more about costochondritis?

Miryam Williamson: Costochondritis is an inflammation of the cartilage where the ribs join the breastbone. It's the only FM pain I know of for which NSAIDS such as naprosyn may be helpful. Pain in your side may be caused by many things, one of which can be a muscle spasm. Do you drink plenty of water? That's one way to minimize muscle spasms. Two quarts or more of water a day can help with that quite a bit.

David: Here's an audience comment on that subject:

LoriB37013: I didn't know that costochondritis was affiliated with FMS. I got diagnosed with costochondritis in Korea, came back to the States and two months later experienced pain in my mid-back which became widespread. I am 28.

Miryam Williamson: There are many things that people with FM get that others get, too, such as IBS. It just seems that we tend to get more of them all at one time.

kjlej: What kind of sweeteners do you use?

Miryam Williamson: I use two sweeteners: stevia, which is made from a leaf that is 100 times sweeter than sugar, and sucralose (brand name is Splenda) which you can probably find in the supermarket right next to the sugar.

David: And just so everyone in audience knows what you are referring to, what does IBS stand for?

Miryam Williamson: Sorry for the initials; Irritable Bowel Syndrome, which can show up as diarrhea or constipation and usually alternates between the two.

iwtrclr: What do you use to increase your energy levels?

Miryam Williamson: Exercise helps enormously. Also, for me starches and sugars drain my energy, they don't increase it. My diet is high in proteins and I burn proteins and fats for energy. I usually have all the energy I need. Example: I've been working since 8 a.m today and it's now 10 p.m. where I am.

David: Here's an excellent question, Miryam:

sunny157: I have such an issue of family members and others not understanding that when you hurt you do not want to do a lot.

David: How would you suggest that be handled?

Miryam Williamson: Oh, that is hard, Sunny. I'd like you to remember that you were not placed on Earth to live up to other people's expectations. If you can't do something, it should be sufficient to say it's not possible for you, although you'd like to. You have a right to expect the people around you to trust that you will always do the best you can do, and that if you don't do something it's because you can't, not because you don't want to.

David: I want to talk about relationships for a moment because you mentioned that your Fibromyalgia created some difficulties and you went through 2 marriages before finding the "right person." Would you mind discussing that a bit more?

Miryam Williamson: My first two husbands expected me to be bright, energetic, and happy all the time. Actually, in those days I needed quite a bit of time in bed. Both of them got tired of my not being able to do everything they wanted me to do. In both cases, we kind of mutually decided it wasn't working and went our separate ways. I've learned since then that what I overlooked was that I was breaking an unspoken contract by being sick. I disappointed those guys and they didn't forgive me. I'm not saying this as well as I'd like to (guess I'm getting tired) but there's a page about it on my web site. The title is "Contracts with our partners" and it's an excerpt from Fibromyalgia: A Comprehensive Approach.

When I met the man who is now my husband, as soon as he started seeming serious, I told him there was something wrong with me physically, that I didn't know what it was, but that sometimes I just got sick and couldn't function very well. So he wasn't surprised or disappointed in me when that happened the first time.

pattielann: But it is difficult with this disease, to just NOT do something, especially when most of us were very driven, goal oriented people. My husband just does not understanding my FM, nor does he seem to want to. It has been very stressful on the 11year marriage, being diagnosed with Fibromyalgia only 3 yrs ago. Now, I don't even work anymore and can't see when I might be able to again. It is too easy to just say they SHOULD understand when they don't. With children, and lives built, it is hard to say, "just go our separate ways."

Miryam Williamson: I understand. I had four children in my first marriage and got to raise them all by myself. What I didn't do right in those marriages was acknowledge that I was letting my husband down and say how sorry I was. The other thing I didn't do was realize that the men had some sadness about the loss of my companionship, too. And above all, I'm sorry I didn't seek counseling to help me (and my husband) cope with my illness.

adia24: I've been dealing with severe, sometimes debilitating, back and neck pain spasms for about 8 years. I've had MRI's, x-rays, blood work, seen countless specialists, and no one has been able to give me a diagnosis. All my tests come back normal. None of the treatments I have received have been effective (physio, chiro, acupuncture) and pain meds (Tylenol with codeine) don't work. The pain is getting progressively worse, and I don't know where to turn next... any suggestions?

Miryam Williamson: Some of our pain is chemical and some of it is postural. I think it might be a good idea for you to ask your doctor for a referral to a physical therapist who can help you with body mechanics rather than just prescribe exercises.

There's a wonderful book by Pete Egoscue called Pain Free that explains how we get to have more pain when we adjust our posture to relieve the pain we already have. It is a very hard cycle to get out of, but a good physical therapist can help you, I think.

TallyCameron: Are you ever incontinent, or have night blindness?

Miryam Williamson: I was night blind for years, but I also used to smoke cigarettes, which causes night blindness. I haven't smoked for 30 years and I've gotten my night vision back. I don't know of any connection between FM and night blindness. About incontinence, I used to say that June Alyson, who does commercials for some kind of incontinence pads, was my patron saint. But I've got to tell you it's not FM that causes incontinence. Most often it's de-conditioned muscles in the pelvic floor, or a yeast overgrowth. I had a bad yeast problem for years and when I got rid of that I got rid of urinary urgency, too.

David: Here's another audience comment on something that proves helpful in relieving the Fibromyalgia symptoms:

DawnK: I found repetitive exercise bothers me but found Yoga to help.

mgussin: Miryam (my name in Hebrew), I have many questions. I've been diagnosed since 1992. I've lost a lot of mobility over the years and have most of the symptoms. Does FM fall under ADA? Can a person be declared unable to work?

Miryam Williamson: It's my name in Hebrew, too, Miryam. I want to encourage you to fight to get your mobility back. Don't let this beat you. Keep moving as much as you can. As far as ADA is concerned, when I was writing The Fibromyalgia Relief Book FM did fall under the ADA.

Unfortunately, a year or two ago the Supreme Court issued a ruling restricting the ADA to visible disabilities like blindness and paraplegia. That doesn't mean that you can't ask for reasonable accommodations at work. I have a lot of suggestions about this in the Relief Book. Some people have gotten on Social Security Disability as a result of FM, but it's much easier to be declared disabled because of depression if you have that problem, too.

David: ADA stands for American Disabilities Act. I'm assuming that you dealt with depression over the years due to your illness. Can you give us an idea of the level of intensity of the depression and then how you dealt with that?

Miryam Williamson: That's a little hard to talk about, but I can honestly say that at a couple of points in my life I was as close to suicide as you can get without actually doing the deed. It was thinking about who would find me (surely one of my children). That brought me back from the edge. I had a very good friend, at one point, who was a psychotherapist. I couldn't have afforded therapy, but she taught me some techniques to get me through the day -- and night.

The last time I had a real bout of depression was about 6 years ago when my stationary bike broke and I couldn't get the parts to have it repaired. After three weeks without exercise I was in the pits again. So I am sure of my ground when I say that daily exercise wards off depression for me.

David: Can you mention 2-3 of those techniques that got you though?

Miryam Williamson: One was to make a list of all the people who would be glad to hear my voice and phone one of them each day. At first I couldn't think of a single person, but my friend insisted I stick with it and I wound up with a list of 20 women I could call -- not to complain, but just to say hello. It was a wonderful revelation. The other -- and this is something I do to this day -- is to make sure always to have something to look forward to. Right now I'm looking forward to a concert by Paul Stookey (of Peter, Paul, and Mary) in February in a location not too far from me. I always have something enjoyable on my calendar, even though I don't have a lot of money to spend on entertainment.

David: Those are wonderful suggestions, Miryam :) Here are a few more audience comments on what's been said tonight:

thorne: Stretching exercises (mild) have been helping me.

kjlej: I got real sick in 1992 and it took me 5 years to get disability. The doctors cannot find any evidence that validated my pain and finally the depression got so bad that I was declared disabled because of that.

BobbiJ: If I can't get help soon, I'll resort to taking my life--soon. I am literally living in bed at 66.

TallyCameron: I don't smoke and never have.

mgussin: I have IBS also. The doctors say it won't get worse, but over the years it has.

Miryam Williamson: Bobbi: please go to my web site and write to me from there. I have some things to tell you. Don't give up, please. You can feel better than you do now.

David: Thank you, Miryam, for being our guest tonight and for sharing this information with us. You have been a wonderful guest. And to those in the audience, thank you for coming and participating. I hope you found it helpful. We have a very large and active community here at HealthyPlace.com. You will always find people in the chatrooms and interacting with various sites.

I hope you'll pass our URL around to your friends, mail list buddies, and others. http://www.healthyplace.com

Thank you, again, Miryam, for coming tonight and staying late to answer audience questions.

Miryam Williamson: Good night, all. It was a real pleasure to be here. I really do answer email; if you want information or encouragement, go to my web site and write to me from there. I'm off to bed now.

David: Good night, everyone.

Disclaimer: We are not recommending or endorsing any of the suggestions of our guest. In fact, we strongly encourage you to talk over any therapies, remedies or suggestions with your doctor BEFORE you implement them or make any changes in your treatment.

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