Fibromyalgia: Tips for Daily Living

WebMD Live Events Transcript

Millions of Americans suffer from fibromyalgia. On March 9 Lynne Matallana, president of the National Fibromyalgia Association, joined us to share her tips for day-to-day living with fibromyalgia.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

MODERATOR:
Welcome to WebMD Live, Lynne. Thank you for joining us today.

MATALLANA:
Thank you very much for having me.

MEMBER QUESTION:
How do you get someone to understand fibromyalgia syndrome (FMS)?

MEMBER:
Sometimes I'd like to make someone who doesn't believe it exists to live in my body for 30 minutes. They would change their mind in a hurry.

MATALLANA:
I think there are some people that you will be able to help with understanding fibromyalgia through the process of communicating with them and providing them with print materials that can give credibility to the illness. It's important for us as patients with fibromyalgia to be honest with people about the experience that we are having. In other words, not to become complainers, but to communicate specifically how we are feeling and how it is affecting our life. There are some excellent articles that a patient can share with family members, friends and colleagues, on our web site, which is www.fmaware.org.

MODERATOR:
Lynne, when you were diagnosed, what was you reaction? Did you know much about fibromyalgia (FM)?

MATALLANA:
It took over three years for me to be correctly diagnosed. I was treated for lupus for almost a year. And when I was given the fibromyalgia diagnosis, I knew virtually nothing about the illness. The good news was that now I knew what the problem was and I had a doctor who was willing to work with me to help educate me about the illness. I felt that it was very important for me to learn as much as I could, but back in 1995 there was very little information available. Fortunately now, when someone receives a fibromyalgia diagnosis, there are more avenues for information and more places you can get support.

MEMBER QUESTION:
How do you adjust to decreased abilities to do your job and get people to understand that you have to decrease your activity sometimes?

MATALLANA:
The first thing I think is important is that we understand that we may have to decrease our activities, but that doesn't mean that has to be the case forever. If you look at what level of functionality you have right now and adjust your life and your work schedule, in the future you may find that you will be able to add some of those activities which you had to give up for awhile back into your life.

I spent over two years in bed not able to work or even get up and function; today I am able to handle a full-time job and I've even gotten back into some of the sports activities that I used to enjoy. It's taken six years to be able to work up to that, but it's important that we always focus on the future and how things can improve.

Patience is sometimes difficult and it can be frustrating when you can't do something, but sometimes we can find things that can replace those activities and fit into the restrictions we have because of our health. For example, I used to really enjoy dancing, and I found it was too fatiguing and caused me too much pain. I replaced that activity with doing water aerobics and found that I could enjoy that just as much as I had enjoyed being a dancer.

MEMBER QUESTION:
Do you exercise regularly?

MATALLANA:
Exercise is a very important part of living with fibromyalgia; however, each person must evaluate at what level and how much exercise is currently appropriate for them.

When a physician recommends exercise, we often think of exercising at the level we did before we became ill. It's important to know that exercise can be anything from simple stretching and moving to actually doing aerobic exercise and everything in between. If you exercise and find that you are in more pain after exercising, then you probably need to adjust the type and amount of exercise that you are doing.

I also think it's important to do things that involve moving or any type of physical activity that you enjoy. Because otherwise, it just becomes another one of those difficult challenges.

MEMBER QUESTION:
How do you find a doctor to treat fibromyalgia without seeming like you are doctor shopping?

MATALLANA:
I don't think there is a problem with doctor shopping. You wouldn't hire a nanny, architect or lawyer without making sure that they have the credentials and fit your needs.

The National Fibromyalgia Association has a referral list that we can provide patients who are looking for a physician, but we still recommend that you contact two or three doctors before you choose which doctor is right for you. Everyone responds differently, and so you might want a doctor who is compassionate, whereas someone else might feel that the location of the doctor's office is a top priority. Do not feel intimidated. Call the doctor's office and ask them if the doctor sees fibromyalgia patients and what type of treatments the doctor usually recommends for people with this illness.

MEMBER QUESTION:
I have not been to a doctor yet; what kind is the best?

MATALLANA:
Most of the rheumatologists that are members of the American College of Rheumatology are knowledgeable about fibromyalgia, however a physiatrist, a neurologist or even a family practice doctor might be more appropriate depending on where you live and what your individual needs are.

MEMBER QUESTION:
What are the current recommendations for improving sleep? I work and have a lot of difficulty working as I don't sleep well or for very long.

MATALLANA:
Sleep is a very important part of learning to live a healthier lifestyle in order to help reduce symptoms. There are many things that a person can do to help improve their sleep.

One of the most important things is to try to develop a schedule and stick with it. In other words, try to refrain from taking naps during the day; going to bed at the same time and getting up in the morning at the same time.

It's important to keep your bedroom specifically for sleep and not use it for watching television, working on a computer or discussing issues with your spouse. If you find that you have been lying in bed for more than 10 minutes without falling asleep, it's important to get up out of bed and to then do something that can cause you to become more relaxed and to calm your mind. Listening to music, meditating, reading poetry or something that is soothing can help you to relax so that when you do go back to bed, you will find it easier to fall asleep.

Make sure that your bedroom is conducive to sleeping. For example, that it's dark, quiet, the right temperature, and that your bed is comfortable with appropriate support. You can use pillows to also add to your comfort.

I do suggest that you talk to your physician about sleep medications that might be appropriate for you. One thing you might find of interest is that researchers are currently testing new medications that help with sleep and hopefully will be approved for people with fibromyalgia in the not-so-distant future.

MEMBER QUESTION:
I have been experiencing something that feels like a "remission" of my symptoms. It is wonderful. How common is this?

MATALLANA:
It's very common. Fibromyalgia tends to wax and wane. However, most people do find that over time their symptoms improve. I think that it's important that people with fibromyalgia hear from people who are experiencing the improvement of their symptoms, because it gives them hope for the future.

MEMBER QUESTION:
Is depression common in FM and what can be done for it?

MATALLANA:
It is estimated that about 30% to 40% of people with fibromyalgia will at some time have to deal with depression. It's not uncommon for people with chronic illnesses.

The good news is that depression is treatable. There are many medications that can be very helpful as well as the fact that more doctors now know about and accept depression as a true illness. It is nothing to be embarrassed by because it is an illness, just like diabetes, migraine headaches or any other disease. The most important thing to know is that there is help and it can be completely relieved.

If you feel that you are experiencing symptoms of depression, do not hesitate to talk to your health care provider about your feelings.

MEMBER QUESTION:
Can fibromyalgia affect your memory and how does it do this?

MATALLANA:
One of the symptoms of fibromyalgia is cognitive dysfunction, oftentimes referred to by patients as "fibro fog". This is something that is very common in people with fibromyalgia.

In the past, the thought was that because we are in pain, the pain is what is making us forgetful and unable to concentrate. New research finds that there may be some specific hormonal or chemical abnormalities that are contributing to this symptom. There is an excellent article on our web site by Dr. Jennifer Glass that talks about the most current research into cognitive problems. Our hope is that we will better understand this symptom in the future and then be able to treat it.

One thing that you can do to help combat this problem is to talk more slowly, to make notes for yourself and to remind your family and friends to be patient when you are trying to get a thought expressed.

MEMBER QUESTION:
Is there a fibromyalgia diet?

MATALLANA:
This is a question that I get a lot. Currently research has not shown any one specific diet to be outstanding above others. However, we do know that people with fibromyalgia tend to do best on a diet that eliminates sugar, caffeine, preservatives and additives, alcohol, and in some cases, if you have been tested for food allergies, to eliminate those foods.

It's important to maintain a healthy diet in order to prevent vitamin and mineral deficiencies. Oftentimes people with fibromyalgia tend to eat carbohydrates in order to boost their fatigue level; however, in the long run this ends up creating energy rushes and then a time where fatigue sets in. So it is better to try to eat smaller meals where you balance both protein and carbohydrates.

MEMBER QUESTION:
What about Aspartame? I've heard that it makes FM worse.

MATALLANA:
Oftentimes people do recommend that people with fibromyalgia stay away from aspartame as well as other additives, such as MSG, food coloring, and other types of preservatives.

MEMBER QUESTION:
Is there physical proof that can help in finding if you really do have FMS, like a brain scan or something?

MATALLANA:
Although in clinical trials there are brain scans that are helping researchers to identify people with fibromyalgia, the cost and the lack of equipment currently makes it impossible to use this technology for diagnosis. There is criterion for diagnosis which was established by the American College of Rheumatology in 1990, with which a physician should use to diagnose a person with symptoms of fibromyalgia. This involves a tender-point examination and a medical history. If a doctor tells you that you have fibromyalgia and has not performed a tender-point exam on you, then the diagnosis may be inaccurate.

MEMBER QUESTION:
I was diagnosed with fibro and they said I had 18/18 trigger points and that it was advanced. What does this mean for me?

MATALLANA:
To diagnose fibromyalgia, the physician will put pressure on the tender points, of which there are 18. For a diagnosis, a person is supposed to have at least 11 tender points that cause pain. The research shows, however, that a person with 11 tender points and a person with 18 tender points both could be experiencing the same amount of distress.

If you have 18 tender points that test positive for pain, that does not mean that you do not have the ability to feel better in the future. It just means that at that point in time you are in pain in all of the tender points.

Some physicians will even make a diagnosis if a patient has less than 11 tender points if the patient has all of the other symptoms of fibromyalgia. I would like to reiterate that the number of tender points that you have does not correlate with your not being able to improve over time.

MEMBER QUESTION:
What do you think of the guaifenesin protocol?

MATALLANA:
There is always much discussion about the guaifenesin protocol. Although clinical trials have not proven that guaifenesin is effective in treating fibromyalgia, many patients do report improvement by following the protocol.

It is my feeling that if a treatment is not excessively expensive or can cause harm, it is up to the individual to decide if they want to try something that does not have clinical evidence of effectiveness.

MEMBER:
I'm trying to find a natural supplement for joint and muscle pain.

MATALLANA:
Whereas in the past there weren't many recommendations of treatment options for fibromyalgia, today, especially if you look on the web, you might find hundreds of different types of supplements, creams, etc. Many of these can be helpful and some of them will have no value.

What the National Fibromyalgia Association is concerned about is that you become responsible in evaluating which of these products you want to try. It's important that you watch for red flags such as they claim to cure fibromyalgia and they are extremely expensive, or they claim to help cure a wide range of illnesses. Unfortunately, there isn't a cure as of yet, so if a product claims to cure, then probably it is not a product that you will want to try.

Be an active consumer. Ask questions of the manufacturer and do a search to find out if the national organizations have an opinion about that particular product. A good way of finding out what companies are working with the fibromyalgia community is to look at the web sites of nonprofits and find out who their sponsors are. Usually organizations reserve sponsorships for responsible companies.

MEMBER QUESTION:
Can FM be genetic? If so, do females have it more often than males or do females just go to the doctor more often than males?

MATALLANA:
Many of the studies that have just recently been concluded do lead us to believe that there is probably a genetic component to fibromyalgia. Research shows that fibromyalgia is found in families. For example, there is a higher incidence of daughters being diagnosed with fibromyalgia if their mother has fibromyalgia. Within the next six months, we will be seeing additional research that explores a genetic predisposition to fibromyalgia.

MEMBER QUESTION:
Is sudden weight loss an effect of fibromyalgia?

MATALLANA:
Weight loss is not a symptom of fibromyalgia and is something that you should immediately bring to the attention of your health care professional. Because irritable bowel syndrome (IBS) often overlaps with fibromyalgia, some people experience weight loss because of the IBS. However, it could be a sign of something else and should be evaluated.

Most people with fibromyalgia tend to gain weight and this is another reason why it is important to try to stay physically active.

MEMBER QUESTION:
How can I survive a long drive from Alabama to Michigan with FM and chronic fatigue and immune dysfunction syndrome (CFIDS)?

MATALLANA:
If you are going to be traveling by car or by airplane, it's important to be prepared. First, do not start a trip if you are tired; try to rest before you travel. Make sure that you drink plenty of liquids, especially if you are flying, because people with fibromyalgia have a tendency of becoming dehydrated. Make yourself comfortable with pillows, ice packs, heating pads, neck pillows and elevate your feet, if possible.

If you're in a car, stop, get out and move so that you increase circulation -- this can help with pain and numbness. Also, take a hot shower or bath before and after the trip to help relax muscles and reduce pain. Some people find that traveling at night can be helpful because they are not experiencing temperature changes, traffic and heat from sunlight (some people are sensitive to the sun). These suggestions can make the trip easier.

When traveling by airplane, plan that when you arrive that you can go someplace where you can rest immediately following the trip.

MEMBER QUESTION:
The future looks so bleak, how do you stay positive?

MATALLANA:
The future isn't bleak. It's important that patients know that there is extensive research being done and that there are conferences and workshops to help better educate physicians. There are pharmaceutical companies and other businesses that are exploring options and there are organizations, like the Fibromyalgia Association which are working to educate people and to fight for more research and more support for everyone dealing with fibromyalgia.

I believe that the future is full of hope and that together we can make a difference. Together we can help keep each other positive. I stay positive because I have had the opportunity to meet so many of the researchers and companies who do care. So I hope that I can pass on to you the knowledge that there are people who do care and will ensure a better future for each of you.

MODERATOR:
We are almost out of time. Before we wrap things up for today, do you have any final words for us?

MATALLANA:
I would like to invite each of you to receive the National Fibromyalgia Association's free newsletter that you can sign up for on our web site, which is www.fmaware.org.

MODERATOR:
Our thanks to Lynne Matallana for joining us today. And thanks to you, members, for your great questions. I'm sorry we couldn't get to all of them. Please visit www.fmaware.org for more information about the National Fibromyalgia Association.

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