Fibromyalgia Update -- Kim Jones, PhD, RN, FNP -- 02/25/03
By Kim Jones
If you are affected by the chronic pain and fatigue of FMS, read what WebMD message board expert Kim Jones, PhD, RN, FNP, had to say on WebMD Live. She answered our members' questions and shared the latest information about this debilitating disorder.
The opinions expressed herein are the guest's 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. Today our guest is Kim Jones, PhD, RN. We have so many questions from our members let's jump right in:
Member: How do you know when it's time to seek a specialist for a specific area of pain?
Jones: If your pain is new or different than your baseline fibromyalgia syndrome (FMS) pain then it's time to seek another opinion. For example, people with FMS often have pain coming from the muscular-skeletal system in their chest. However, if their chest pain is new or different, for example, if accompanied by shortness of breath, accentuated by exercise or relieved by rest, they should consult their healthcare provider because people with FMS can get other diseases such as heart disease.
Member: Today both of my legs went numb at the same time. This has never happened before. What should I do?
Jones: Numbness in the legs is often associated with pain and FMS. However, if the numbness is new or different than your baseline FMS symptoms it should be evaluated. Particularly, if your leg numbness is accompanied by bowel or bladder changes.
Member: I know that exercise is an important part of treatment for FMS. My biggest problem is how do I start without sending myself into spasms for three to four days following exercise? I always end up getting hurt worse.
Jones: Your experience with exercise and FMS has been experienced by essentially all people with FMS. Exercise that is too intense will always leave you in more pain and with worse fatigue. The key is to find a low-intensity exercise program that keeps most of your movements near the midline of your body. For example, limit the amount of activity with your arms over your head. Also, an exercise class geared toward those with arthritis or older adults is appropriate for people with FMS.
Jones: There is a connection between fibrymyalgia and depression and anxiety. For most people, the fibrymyalgia comes first, then after months or perhaps years of poorly treated pain and non-refreshing sleep people become somewhat depressed or anxious about their health. We find that most with FMS benefit from a medication for anxiety and/or depression along with counseling. I am less aware of a connection between bipolar disease and FMS.
Member: Are water exercises good for fibromyalgia patients?
Jones: Most water exercises are wonderful for FMS patients. However, movements that require a lot of over-the-head activity, such as the front-crawl swim stroke are difficult in FMS and will almost always worsen your pain. Look for a heated pool in your community as well as therapeutically heated pools, which are even better tolerated than lap-swim heated pools.
Member: Pool therapy in a warm pool is very good to start exercising as well, but make sure the water is heated.
Member: I have found that in exercising, being in deep water helps me the most, but my doctor wants me to add weights for cardio. Is this harmful? I know I need cardio but at this point I hurt badly.
Jones: We did a study a couple of years ago that demonstrated that weight-training in FMS is safe and effective in reducing pain, reducing depression, reducing anxiety, and improving strength and quality of life. However, most weight-training programs are not geared toward people with FMS. If you would like to see this weight training program, you can see our web site, www.myalgia.com for the weight-training and FMS videotape.
Member: I have been diagnosed with fibromyalgia. I have a sleeping disorder and am having a lot of pain in my lower arms when I use my hand very much. When I pick up things my arms are very weak and when I write I have pain. Is this normal for fibromyalgia?
Jones: Let's talk about sleep and FMS and then we'll talk about pain in the arm. Most with FMS have light, fragmented, non-refreshing sleep. Many people report that they sleep no more than 30 consecutive minutes at any given time. This is terrible for your health. If this is the only sleep problem that you have, we often treat it with sleep hygiene, which is described in the book A Woman's Guide To Sleep. We also often use prescription medications. Ambien and trazadone work well if the probably is difficulty falling asleep. Sonata works well if the problem is staying asleep.
Another sleep problem in FMS is restless leg syndrome, which feels like pain and tingling and discomfort deep in the legs, worse at night and worse with rest. It is relieved by walking around. This is obviously a problem when you need to be asleep. Restless leg syndrome is treated with prescription meds such Sinemet or Miratex. Occasionally, muscle relaxers such zanaflex are helpful.
Another sleep problem in FMS is obstructive sleep apnea. If you have symptoms such as loud snoring, pauses in breathing at night, and gasping for air, you should be evaluated in a sleep laboratory to see if you have sleep apnea. If you are found to have sleep apnea, a machine called CPAP can be prescribed.
Now let's talk about the arm symptoms. If the muscle fatigue and pain are new and different than your baseline FMS symptoms, they should be evaluated. But many with FMS have symptoms such as those you described. It is particularly concerning if the weakness is in only one side, especially if you are over 60 or have any other one sided symptoms, such as loss of vision in one eye.
Moderator: We have several questions regarding how to get a doctor in different parts of the country. What is your best advice on getting a good doctor -- one you won't have to teach about the disease? How do you find one in a particular area of the country?
Jones: Fibromyalgia has been required on state board exams for new doctors for the past three years. Those people that went to medical school more than five years ago may not have heard of FMS or may have heard of it only in the context of being a psychiatric disease, which it is not. Here are some ideas on how to find a healthcare provider:
In Portland, Oregon, we see people with FMS at the Oregon Health and Science University division of arthritis and rheumatic disease. Unfortunately, we have a six-month waiting list, but we are working hard to not only see those with FMS but to educate other healthcare providers on how to treat FMS.
Member: What are your feelings about treating fibromyalgia with long-term opiod pain medications, such as Lortab and/or OxyContin?
Jones: Pain must be treated in FMS. Some people will require long-acting opioid medications such as MS Contin. Other people will be able to manage their FMS pain with non-narcotic agents such Ultram or Ultraset, then they can add short-acting narcotics such as Lortab for painful flares.
Member: What alternatives are there to treat the pain of this horribly debilitating fibromyalgia besides numerous medications? Can the different medications cause psuedo pain and make the fibromyalgia worse? How do you decipher what is and isn't related to fibromyalgia but caused by the medications?
Jones: Pain and FMS must be treated at several levels. Most require some medication. Our goal is to use as few medications as possible, but still allow you to have a highly functioning, good quality of life. In addition to medications, we prescribe physical therapy and occupational therapy. Also, most will require an exercise program. Lastly, most people require stress-reducing techniques, cognitive behavioral restructuring, and sometimes, anxiety and depression medications to help their pain.
Member: Are there any NEW or HOPEFUL treatments on the horizon, or any that those of us with fibromyalgia may not know about?
Jones: We are currently conducting a study funded by the National Institutes of Health. We are using a medication called Mestinon in conjunction with exercise classes. The idea behind the study is that people with FMS fail to release a restorative chemical called growth hormone during exercise. We think this might be one of the reasons that exercise is so difficult in FMS. We hope to have results in the next year.
There are no FDA-approved medications for FMS; however, most all drug companies are very interested in bringing a product to the market that could help the 10 million plus people with FMS. Orthopharmaceutical, Pfizer, and Cypress Bioscience are very close to requesting an indication for FMS from the Food and Drug Administration.
Member: I have FMS, osteoarthritis, and suffer mini strokes from time to time. Are any of these the cause of the other?
Jones: The pain of osteoarthritis can worsen the pain of FMS. It is what we call a peripheral pain generator. Likewise, many strokes can also worsen pain. It is highly unlikely, however, that your FMS is causing either your osteoarthritis or mini strokes.
Member: I have read about the connection between hormones and FMS, mostly low progesterone levels. How do you feel about this connection?
Jones: Approximately 85% to 90& of those with FMS are women. This leads us to believe that female hormones such as estrogen and progesterone may play a role. But simply taking estrogen or progesterone replacement therapy is not found to be extremely helpful in FMS. However, there are some mild benefits in taking an estrogen patch in place of an estrogen pill for those who choose to take estrogen replacement therapy.
Member: Do other victims of fibromyalgia have painful lumps form in their arms and legs and across their abdomens? Is there anything that'll help prevent the lumps or get rid of them?
Jones: Some people with rheumatoid arthritis have painful lumps under their skin called subcutaneous nodules. These are not part of FMS, however.
Member: Are CFS and FMS the same?
Jones: Chronic fatigue syndrome is defined by four different consensus bodies, all of which agree that its hallmark symptom is chronic fatigue for at least six months for which there is no other medical explanation. The American College of Rheumatology definition of FMS is based on pain, not fatigue. It is possible to have one without the other. However, approximately 40% of people with FMS also have chronic fatigue.
Member: Can women get Viagra to counteract the sexual side effects of our pain medications? One doctor wanted to put me on it and my new doctor says no.
Jones: I have never prescribed Viagra but I do send patients to a urologist who specializes in low sex drive particularly for women with chronic disease. Some of the antidepressant and antianxiety medications decrease libido. However, my experience is that the pain, fatigue, anxiety, and depression of FMS are enough to kill one's libido. So I generally start people on medications for pain, anxiety, and depression. Then, if those symptoms become better controlled and the patient is concerned more about libido than pain and other FMS symptoms, then we may decrease the dosages of the medications. It is important to make medication changes one at a time so that you can determine which medication may be responsible for which side effects.
Member: Do you recommend vitamins for FMS patients?
Member: Does taking vitamin B complex supplements help?
Jones: Vitamin B-12 is a supplement used for a very specific medical problem called pernicious anemia. There is no evidence, unfortunately, that B-12 helps FMS symptoms. There is very little research, to date, about vitamins, minerals, and herbs in FSH. However, this is going to change quickly because a recent study documented that nearly 100% of people with FMS have tried or are currently using complimentary and alternative medicine such as vitamins.
Member: Why do FMS patients have problems with the nerves when the disease is muscular?
Jones: The central pathology in FMS is amplified sensation from the brain and spinal cord. This is called central sensitization. Think of it as turning up the amplifier on your stereo; loud sounds louder, cold feels colder, pain is more painful, and sometimes even touch feels painful. The muscles in FMS are thought to be reconditioned and more sensitive to pain reception, but otherwise healthy.
Member: What causes FMS? Do we have that question close to being answered yet?
Jones: It is thought that FMS has both a genetic and environmental cause. In people who are genetically predisposed to developing FMS, an environmental insult may start the disease. Common environmental insults include minor motor vehicle accidents causing whiplash injuries, a prolonged viral illness, or a prolonged stressful situation. Therefore, you could see that if others in your family had FMS, you should do everything possible to avoid experiencing one of those environmental insults.
Member: I recently went back to work as a full-time special education teacher, after not being able to work for about five and a half years due to FMS/CFS. The second day of work I was physically assaulted by several of the emotionally disturbed students in my class. I've had the worst flare since being diagnosed with FMS/CFS in five years! What do you recommend for someone who wants her life back in a teaching capacity and needs the income to be able to afford this disease? I use alternative medicine and therapies, which are not covered by any insurance.
Jones: Physical trauma will almost always cause a FMS flare. Have you considered teaching other people how to teach special ed and reduce the likelihood that you would have much physical trauma?
Member: Do many with FMS have pain in the upper spine from the neck to the head?
Jones: The definition of FMS includes axial pain, which means in the spine, including the neck. Most people also have pain in the head.
Member: What is your take on Dr. Tietelbaum's book From Fatigued to Fantastic and Dr. St Almand's book What Your Doctor May Not Tell You About Fibromyalgia? Following Dr. Tietelbaum's protocol and Dr. Almand's protocol seems to be practical, but hard.
Jones: There is a very affective response in the body to being told that you will definitely get better. In fact, the most stringent the protocol for getting better, and the more money spent in trying to get better will illicit this response. This response is called the placebo response. Unfortunately, the placebo response doesn't last forever. One must conduct randomized, placebo-controlled trials to determine if a treatment is effective. Sometimes what is effective is the provider's personality, but not the treatment.
Member: Any advice for men in the audience who have FMS? Sometimes I think we feel a little left out, given the incidence statistics.
Jones: I am always excited when I have male patient with FMS because I can often find another source of their pain. For example, some men have extremely low growth-hormone levels, or low testosterone problems, or other endocrine problems that are treatable.
Member: A couple of years ago I attended a fibromyalgia conference in Portland, and a company -- Cypress Bioscience, I believe -- was talking about the research it was undertaking. I know they were investigating a genetic link. Would establishing that there is a genetic component to FMS be meaningful in treatment terms?
Jones: Establishing a clear genetic link for FMS is essential not only in legitimizing the diseases to insurance companies and funders, but also in developing targeted therapies for FMS. The Cypress Bioscience conference that you mentioned found a promising genetic link involving serotonin reuptake in FMS.
Member: I was diagnosed three years ago by my rheumatologist. I was the worse case he had seen and could only assist me with getting SSI. Do you know how the government feels about FMS/CFS?
Jones: People with FMS are getting disability. However, it often takes more than one attempt. Getting disability is very stressful and results in less income than continuing to work part-time for most people. I recommend finding an attorney who has dealt with FMS and disability before negotiating the FSDI channels.
Moderator: We are out of time. I'm sorry we couldn't get to all of your great questions. Our thanks to Kim Jones, PhD, RN, and thank you members for joining us today. For more information, please Kim on the WebMD message board, FMS/Chronic Fatigue with Kim Jones, and at www.myalgia.com.
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