MY ANSWER TO SUZY Q

Today there are 3.7 million Americans coping with fibromyalgia. Some people have symptoms of both erythromelalgia and fibromyalgia (EM & FM), others manifest only one. Either way, the discomfort involved can profoundly interfere with their ability to cope with day-to-day demands. About a week ago I received a question from Suzy Q. in the comment section of my post on Erythromelalgia & Fibromyalgia (see the sidebar directory), saying she had both ailments and asked for advice on how I managed to cope.

Suzy, the answer is … it’s not easy. When I was working full time, I had to focus solely on my job. As a consequence, much of my personal life was put on hold. I hired a housekeeper to come in twice a month who had her routine that helped keep my house in order. But there is much that housekeepers don’t do, and some things either had to wait until I was able to handle them, or my husband pitched in to help out. I realize some people can’t afford housekeepers. In that case, ask family members to help out. Try to have more relaxed expectations and do only the tasks that you can manage.

Fortunately, my chosen career in publishing allowed me to utilize my intellect more than my physical body, but the sleep disturbances that accompany both ailments often left me groggy and drained the next morning. I knew I was not functioning at an optimum level, but our household needed my income, so I kept making the daily 100-mile commute and work the long hours often required in the magazine industry.

I weight-trained three times a week and walked for at least half an hour whenever the Southern California weather allowed. The physical activity was a challenge, but it actually made me feel better and helped me sleep at night.

I’m now working from home and because there is less stress the quality of my life has improved a great deal. I have a lot more control over my environment. When I need to rest I can do so, even if it’s midday. My work hours are flexible and can be spread across a 24-hour period if necessary, rather than the eight to 10-hour window I once had to work within. Listed below are some points that I’ve found helpful in my everyday dealing with both EM and FM.

ERYTHROMELALGIA
•    Keep searching until you find a medical practitioner who recognizes the term and knows how to treat it. Interestingly enough, most of the doctors I tell the diagnosis to have never heard the term. Only my rheumatologist recognized what my symptoms indicated.
•    Stay out of situations that may cause EM flare-ups, such as being outside on hot summer days.
•    Wear shoes that can be slipped off easily and do so as often as you can. Avoid those that are closed-in. I love boots, especially in winter. But I have to be sure that wherever I plan to go in them is a short trek and that I will be able to remove them at a moment’s notice if I need to. I always carry a pair of sandals with me, even in cold weather.
•    During hot weather, I find that my EM flare-ups are worse at night. I rarely sleep with my feet covered. If the flare-up is more than I can stand, I get up and soak my feet in a tub of tepid (not cold!) water. I also keep a small spritz bottle of water beside my bed and sometimes spray my feet several times until the burning and the pain has subsided enough for me to drift off.
•    Some people find that aspirin helps. That has not been the case for me. But you might want to try it.

FIBROMYALGIA
•    Try to get some form of physical exercise each day. This may help you sleep at night. Even if it doesn’t, you need physical activity to maintain your overall health anyway.
•    You might want to see if your doctor is willing to write a prescription for Lyrica. I tried it and for four days, I felt really good. I felt focused and energetic and got really excited because I thought I had finally found some help. On the fourth day I came in from working outside on a particularly warm day in June. I flopped down on the sofa to cool off in the air-conditioned house. When I looked down at my feet and ankles, I went into a state of shock. Both were so swollen that the skin was bulging outside all the straps on my sandals and had turned a weird dusky red. Swelling happens to be one of the side effects that manifests itself in some people, so I stopped Lyrica that minute. I was really disappointed that my body had reacted that way, but I would rather deal with FM than with what I was looking at that June day on the sofa. I found out later that because I’m also taking Norvasc, a blood-pressure medication that can also cause swelling of the feet and ankles, apparently taking the two on a daily basis is more than my system can handle. But that may not be the case for you. Have your doctor evaluate your situation to see if you’re a good candidate for Lyrica.
•    If you can, rest during the day when you feel you need to. Since I’ve started doing that, I find that getting through the day has become a little easier; energy levels remain more stable.

FOR BOTH CONDITIONS
•    Try to keep life upsets and irritations to a minimum. I found that emotional upset often causes or exacerbates both ailments. Meditate if that helps. Listen to calming music, burn a scented candle.
•    Be good to yourself. Forgiveness is a virtue and especially when we practice it on ourselves. I spent most of my life beating myself up emotionally, labeling myself as “lazy” because I was unable to keep up with all the demands made of me as a young working mother and wife. I would go into deep depressions over what I viewed as my “failures.” I was self-conscious about the dust-bunnies under the sofa, but didn’t have the strength to deal with them. I just knew that others viewed me as a slob.
•    Take comfort in the fact that you live in an age in which both conditions have been recognized as bona fide medical diagnoses and not just figments of an overactive imagination.
•    Both conditions are fairly silent and hidden. Because I look so healthy, I often feel that when I mention my conditions to some uninformed people, they still view me as a hypochondriac or think I’m making excuses for my “laziness.” If that’s the case with you, just let it go. You know how much you’re suffering, so take care of yourself first.

I hope what I’ve written helps you and gives you some hope.

Resources:
NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda, MD 20892-3675
USA
Tel: 3014954484
Fax: 3017186366
Tel: 8772264267
TDD: 3015652966
Email: NIAMSinfo@mail.nih.gov
Internet: http://www.niams.nih.gov

Erythromelalgia Association
200 Old Castle Lane
Wallingford, PA 19086
USA
Tel: 6105660797
Email: memberservices@erythromelalgia.org
Internet: http://www.erythromelalgia.org

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org
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Disclaimer: The purpose of this weblog is not to dispense medical advice nor in any way is meant to be construed as diagnostic or prescriptive. Always check with your physician before beginning any new program or trying any of the items discussed in the posts that appear on this site.

Comments

[Timothy W.]

Dear Vonnie,

Once again, your extremely informative article SURPRISED me like nobody ever does! Indeed, it is not "easy" to cope with these conditions. Many practitioners try to reduce their patients' symptoms without acknowledging the root causes, which may involve constitution, life style, endocrine or any possible cause. I have found people with these conditions can be treated successfully with acupuncture and oriental medicine, which focus on treating the "person" rather than the "symptoms." The results are good and the prognosis is positive.

Welcome back, Vonnie! Please keep the GREAT work going!!!!

Best Regards,
Timothy W.