Just wanted to introduce myself. My name is Dalarie Anderson and I live in Somerset, KY. I am 40 years old and have been struggling ever since I was a teenager with "hot feet", recurrent face flushing, and at times "red hot fingers". After doing my research, I am sure I have erythromelalgia. My symptoms come every night and I have had countless restless nights because of this. I go from using a fan, lathering my feet in lotion, putting them in ice cold water, etc with only temporary relief. My symptoms can be onset by exercise, wearing warm shoes, walking, taking showers, etc but sometimes appear for no reason. I was recently sent to a rheumatologist because my family doctor thought I may have had lupus and tests turned out negative twice. He then released me back to my family doctor and I am at my wits end trying to get this diagnosed. Would a high platelet count indicate erythromelalgia? I have no underlying medical conditions such as diabetes, high blood pressure, etc, I'm otherwise a healthy person. Please, I need someone's feedback who is like me with no underlying health problems. I have been documenting my symptoms with pictures and have showed them to my physicians. My pictures are on my cell phone and I will upload them later as soon as the battery charges. Please help!!!
Dear Dalarie,
I've just begun using this site myself.
My impression is that a high platelet count can cause pain. You should consult with a hematologist. There are medicines
that will bring down the count, such as anagralide.
Barney
Hi Dalarie - it could well be that you have EM, but, as I'm finding out, it is very difficult to diagnose, and there are a varying range of symptoms. I've been diagnosed with it, but the doctor who gave the diagnosis gave me some terrible advice (such as icing my feet - this isn't a good idea as it can result in your feet becoming even hotter afterward, and taking aspirin, which can work for some types of EM I think, but I shouldn't be on it because of other medication/conditions which this doctor knew about...) I'm going to get a referral to a rheumatologist that has been recommended to me as he knows about EM. If you can, find a rheumatologist in your area that knows about EM and see what they say. Good luck!
Hi Dalarie, sorry to hear about what's been happening to you. EM can be a genetic problem and that can be checked out. Since you seem to have had those problems at an early age it is entirely possible that it's inherited - anyone in your family with the same problems? EM, that is not genetic is actually impossible to really diagnose, in other words there is no *hard* evidence - just the visible symptoms. In my opinion dermatologist seem to be rather knowledgeable about EM.
Only a small number of people find relief taking Aspirin or other pain pills like that. You can reduce the heat/pain by staying in cool temperatures (if possible) or with bean bags, frozen gel packs, cool pads....... You may want to check out those kind of items on Amazon.com . DO NOT USE COLD WATER. It will crack your skin and cause ulcers.
Medicationsense.com has articles by Dr Jay S. Cohen that may be helpful for you.
I don't know whether another disease has anything to do with my EM. It started after I took an antibiotic called Ciprofloxacin - a very dangerous drug, forbidden in other countries or used in chemotherapy. But I didn't know it at that time. A year later I developed pericarditis. I don't take any other medications - I am too scared to take pills like antidepressants. Good luck and let us know how things are going for you.
Domina
Dalarie, your description sounds just like mine. Only I have never put my feet in cold water, but I do use frozen gel packs wrapped in a bath towel. That helps a little. I have had this for a least 2 1/2 years and before that just warm itchy feet that if I kept them uncovered I could sleep. Now I get very little sleep at night and often go back to bed during the day. Luckily I am retired, so can do that. This morning is one of the times the burning appears for no reason. I did the same thing I do every morning and can go all day without burning.
I am seeing a dermatologist, who diagnosed me with EM. I tried Aspirin, Propranolol, tramadol and gabapentin and none of these helped. I am hoping to get an appointment at Mass. General Hospital in Boston soon.
I hope you can find a doctor in your area that help you.
Pat in NH
Dalaria,
I have the same symptoms as you-the red face, hands and feet and have been suffering for about 17 years, I am now 45. I have tried many, many medications with only 1 helping-Effexor 225mg/day, but the side effects were not worth it. I also have thrombophylia (which is essentially "thick blood" with a tendency to form clots, which I have thankfully never had) and Hoshimoto's Syndrome (which means some day my thyroid will stop working) but is very treatable, when that occurs.
The redness in my face is the most bothersome for me, because it is very noticable and people often comment about my flushing. Spicy foods, carbohydrates, alcohol and stress will definitely cause the flushing, but I also flush for no reason at all. I was diagnosed about 5 years ago and was so relived to have a diagnosis, but haven't been able to get much relief from the burning and redness.
I wish you Good Luck, let me know if anything helps you.
Jacquelyn
Thanks everyone for your feedback. I have been contemplating seeing a dermatologist because I have seen they can diagnose EM. I recently saw a rheumatologist who is part of the University of Kentucky and he didn't know how to diagnose nor treat EM. He said that if I had EM, my platelet count should have been elevated, which it wasn't. From the research I have done, no lab test can confirm EM, am I right about this?
As I said before - there is no test to show EM - it's not visible in the blood or urine , it can't be x-rayed ...... - just like fybromelalgia was a disease where doctors thought the people were faking it when they complained about pain that wasn't visible. (they now just found out what the cause of fibro is). Your doctor is funny - if he doesn't know how to diagnose EM than how would he know that your platelet count should be elevated if you had EM? - BS -
I would suggest to read what Dr. Cohen (who has EM himself) has written about this disorder and take it to whatever doctor you are going to see about EM. I don't know how bad your flares are but I would like to caution you to be very careful about any medication - google every pill that a doctor wants to give you, find out everything you can before you take anything.
Take care and stay cool
Domina
Hi Dalerie, YES your EM could be caused by a high platelet count. EM is a syndrome of effects, symptoms, that can have a number of possible causes. High platelets would be a Myeloproliferative cause (and, it can be inherited). Or you could have an inherited sodium channel mutation cause. The fact that it started so young for you makes it sound possibly inherited.
Since platelets exist for the purpose of causing clots in blood (usually when you get cut), a high count can cause tiny platelet clots in the blood capillaries under the skin, which can cause EM symptoms. Have you tried aspirin? If you take 325mg of aspirin, do you get any relief, and for how long? If it's actual relief of the hot, red symptoms for a fair bit of time, good chance the platelets are the problem, and aspirin is your solution. (But since aspiring slows the body from making platelets, it can make you bleed elsewhere. And it's hard on the stomach. The doctor should be the one to tell you what to do. If the aspirin works, maybe try a vascular doctor).
If the aspirin only gives you a short time of diminished feeling of pain but it's still hot and red, or no relief at all, then platelets are probably not the problem. Maybe you have inherited (sodium channel mutation) EM. You can get a genetic test for that. Then a sodium channel blocker like lidocaine might work. Xenon Co. is trying for a lotion-type medicine that is a sodium channel blocker, specifically for EM and pain.
I have to say, I do soak my feet in cold water. I make sure it isn't ICE cold, but cool-cold. And I put my feet in plastic bags (very big freezer bags are strong and don't easily leak) to keep my feet from being in water so much that my skin breaks down. You can apply lotion before the bags and that helps keep the skin from cracking. Since I quit directly letting my feet get wet, using bags, I've had no problems (a couple months now). Elevating your feet helps, too. Especially after a soak.
I hope you get it figured out and get relief!
Jane
I wanted to add that a sodium channel blocker might help whether it's inherited EM or not. (but not if excess platelets are the problem, since that's another body system altogether from any other causes of EM).
You have to be careful with the ice cold water...easy to get frostbite when you have EM....have had EM since 95...only got diagnosed last year officially...so far the treatments I have tried have not helped but it is a lot of trial and error, some luck involved too.
True about frostbite. I keep water no lower than 55-60 F.
I have had it since childhood but my genetic tests were negative. I did not get diagnosed until 2 years ago. There can be many underlying causes. I had seen a rheumatologist, dermatologist and vascular physicians and no one knew what I had. I saw a neurologist that specializes in pain and neuropathy to finally get my diagnosis. I would look through their hospital bios or see is anyone has a specific interest in EM or neuropathy pain. They may have had some experience with it.
Good luck!