ERYTHROMELALGIA & FIBROMYALGIA

Mine first manifested when I was about 13. I had been staying with the Browns, a couple who had volunteered to house and feed me while my parents went to White Sands, New Mexico, seeking treatment for my father’s paralysis from carbon tetrachloride poisoning. I had been outside in the cool morning air taking a walk around their extensive country property. I was feeling exhilarated, but as soon as I entered the house, my hands began to swell, tingle, itch and turn a bright red. I was horrified and assumed I was having an allergic reaction of some kind. Anna Brown was in the kitchen and I didn’t want her to see my hands. She was an RN and I knew she would want me to see a doctor to which I was very resistant. (In spite of the Browns’ kindnesses, I felt like an alien in a strange land; all I wanted was for my parents to come home and for the familiarity of my own nest.) I went into the bathroom and ran cool water from the tap over my hands until they began to look normal again.

I had had a lot of aches and pains as a youngster, so many in fact, that my mother marched me from doctor to doctor trying to find out what the problem was. Various diagnoses came forth, such as rheumatic fever or growing pains. One doctor said he had detected a slight heart murmur, but that it was nothing to worry about.

The years rolled by, I became an adult and gave birth to two boys. I had trouble with my feet and hands burning and aching quite frequently, but it never even occurred to me that it was a medical condition. I just assumed it was my own normal set of aches and pains. I thought everybody felt like I did. Then one morning I awoke with a black second toe on my right foot. It hurt terribly, itching, burning, aching. I got into see my doctor as soon as I could. He took one look and said it was gangrenous and that he might have to remove it, but first we could try a more conservative approach. He sent me home with a treatment regimen (I don’t remember what, the memory is lost in the deep mists of time, but I’m sure it involved antibiotics). The final diagnosis for this episode? Reynaud’s syndrome.

It took months for the dusky blackness to clear away, and I learned I had to treat that toe with the utmost care. It was never quite the same again, always very tender. Once more, there were more questions than answers. Soon after that, I started to suffer from severe fatigue and depression. My marriage, the care of two small children and holding down a job were often more than I could handle. Sometimes I would be so tired I would ache all over. I called it “bone tired.” Again, doctors of that day just sent me home with the dictum “It’s all in your head,” or “Get a hobby. Get out and meet other women your age. Have some fun.” 

The boys became adults and I became older, all the while struggling to keep my life afloat and going in some sort of coherent direction. Although I had suspected some sort of autoimmune disorder when I was younger I couldn't seem to get medical people to corroborate my suspicions. At about age 50, medical science failed me again by giving me tranquilizers and hormone replacement therapy. The HRT seemed to help a little, the tranquilizers not so much. I was already slogging through knee-deep mud day after day. I didn’t need tranquilizers slowing me down even more. My feet were still burning and stinging at night. I couldn’t sleep with them covered. Sometimes I would have excruciating muscle spasms. For those I would soak my feet in water as warm as I could stand. Sometimes with Epsom salts added. For the symptoms of erythromelalgia, I learned to soak my feet in tepid water. Cold water was too shocking. When I first awoke each morning I had to be very careful how I put my weight on them. They felt arthritic, as though the bones would snap at the slightest pressure.

A year or so later, I moved to another city and tramped yet to another doctor. I explained my overwhelming fatigue. He drew some blood. A week later I went back and he said “Well, you really don’t have clinical hypothyroid, but the numbers are a little off. Let’s start you on some supplementary Armour thyroid tablets.” That was fine with me. After six months, the numbers still weren’t what we wanted, so he added a dose of Synthroid to the mix. That, combined with a cocktail of injectable HRT, seemed to do the trick. I felt like my life had been handed back to me wrapped in a beautiful gift package. To this day, I thank that doctor for saving my life.

But it wasn’t the whole answer. A few years after that, I started developing joint problems, so I went to see a rheumatologist. He made extensive X-rays, took blood for testing, and began touching pressure points on various parts of my body. I yelped in pain each time. The diagnosis? Fibromyalgia. I also, almost as an afterthought, mentioned my stinging, burning feet. In return, he said offhandedly, “Oh that’s known as erythromelalgia. You can take an aspirin at bedtime for that.” Pooh-pooh … it’s nothing. It’s NOTHING? My whole life I’ve been suffering and it’s NOTHING? 

I have to thank him, though, for giving this ailment a name. It became my jumping off point for more research. Here is what I found. The following information can also be viewed on www.rarediseases.org:
“Erythromelalgia is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterized by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. (The prefix "erythro-" denotes redness, "mel-" is a combining form meaning limb or limbs, and the suffix "-algia" indicates pain.) Although erythromelalgia typically affects both sides of the body (bilateral), it may sometimes involve only one side (unilateral). In addition, the disease course may be extremely variable from case to case. For example, in some individuals, symptom onset may be gradual (insidious), with the condition potentially remaining relatively mild for years. However, in others, it may have a sudden (acute) onset, possibly spreading and becoming severe over weeks.

“The specific underlying cause of erythromelalgia remains unknown. However, the condition is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities. Erythromelalgia may be an isolated, primary condition or occur secondary to various underlying disorders. Primary erythromelalgia may appear to occur randomly for unknown reasons (sporadically) or may be familial, suggesting autosomal dominant inheritance.”

Through my investigation, I learned that about 1 person in every 40,000 manifest it in some way or another. Some people have it worse than others. It’s one of those autoimmune diseases, and the tendency is often passed on genetically. My mother manifested it in her face, but again we didn’t put two and two together until a couple of weeks ago when through my investigation I stumbled upon this information. But it does cause a lot of discomfort and makes life miserable for those of us who have it. I, myself, have both fibromyalgia and erythromelalgia along with other autoimmune manifestations such as irritable bowel syndrome. There is no cure. I treat the symptoms (I've learned I can't wear closed-in shoes, it's sandals year round) and try to be as kind to myself as I can. I keep on going and plan to for as long as I can. Mental toughness and positive outlook account for a lot. 

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

[Liz Sheppard]

I am disabled by severe pain from erythromelalgia. I also have fibromyalgia. Thanks for sharing your story and tips.

~Liz

[Mary Coleman]

I think it's wonderful that you're sharing this info with others.

I also have fibromyalgia, Erythromelalgia, IBS and thyroid problems. When a genetics counselor suggested I track down family medical history, I used the web to locate relatives. I learned that I have several cousins with the same set of mysterious symptoms but none of their doctors knew about Erythromelalgia.

Maybe someday we or our descendants will find out what this genetic disorder is and we'll have some peace. I haven't given up searching for answers.

Thanks for sharing your story.

Mary

[suzy Q]

I have both conditions and I am in chronic pain daily.

Let me know what you do to cope.

Suzy

[Timothy W.]

A touching and brave story! I believe any illness must have a "cure" or at least a "temporary" suppressive approach. I myself have had chronic bronchitis for seven years that resists the healing efforts of all the doctors I have consulted. That is why I am studying an "alternative" approach for my health, namely, Traditional Chinese Medicine (TCM). I am so impressed and admire your courage and perseverance. I know someday your questions will be answered in the way you expect and desire.

You are my inspiration, Vonnie!

Thank you for your courage, and BTW, your story did inspire me to explore on the unknow territories of the Medicine.

With Best Wishes,
Timothy W.