hello everyone,
I’m 18 years old and I’ve recently been diagnosed with EM, although I’ve been experiencing it for the past 2 or 3 years. I don’t feel any pain but my hands are pretty much bright red all day long, and i feel them getting really warm, what makes me think that it will get worst over time until the point that I start to feel pain.
My question is: should I keep going to the gym and lift weights? every time I practice any type of exercise my hands and feet go red but since I don’t feel pain I see it more on the aesthetic side. is going to the gym gonna make my EM progress faster because of the frequency of flare ups? should i take advantage of my lack of pain to get fit?.these question came up when i read that a lot of you try really hard to avoid anything that would cause a flare up…So I’m not sure what to do and would really appreciate some insight.
sorry about any grammar mistakes, English is not my first language
I say keep working out! Not only will it keep the rest of your body in good condition, but it is also such a great stress reliever! I hit the gym most days of the week - EM be darned. I have EM in my feet so once I get home I try to cool them down and elevate them for a while.
I do cardio first thing in the morning and lift weights later in the day. I find early morning to be better for more intense physical activity. Though my symptoms are well controlled with medication, I’ve not found exercise to have any adverse long terms effects thus far.
My EM is bearable, so I go to the gym. I know my feet will flare, but I go anyway. There are several daily activities that I know will cause flaring (like showering ), but I do them and then deal with the flaring afterwards. I hope yours is bearable too, and it allows you to continue doing everything that you enjoy doing!
I exercise daily at home works for me best. I am also an avid Gardener. Over the years I have found ways to adapt, For example in warmer weather I garden in the evening wearing flip flops & loose cotton shorts & vest, I use a fan in doors to exercise when needed, earlier in the day. I had my first ever flare to my feet whilst gardening, that was thirteen years ago. my E.M is now widespread but I do believe exercise helps me.
Continue working out - don’t let EM take that from you. Try wearing compression arm sleeves for your hands. If it’s in your feet too wear compression socks.
I go 4 times a week first thing in the morning. Some days I flare and some days I don’t. Exercise is my key to continue remaining positive and trying to be healthy.
Keep going - take breaks at the gym when you need to. Drinks lots and lots of water.
The first I tried was Propranolol. It’s a beta blocker that lowers blood pressure. I’ve found increases in blood pressure to be somewhat problematic. Propranolol is modestly beneficial, but could not stop flares from occurring. I’ve since tried stopping it on a couple occasions, but found a slight increase in symptoms when I did so. Thus, I continue to take it.
The second I tried was Mexiletine. It’s a sodium channel blocker. It stopped 90-95% of my symptoms. Erythromelalgia is believed to be caused by a defect in certain sodium channels that cause hyper-excitability. Essentially, the voltage gate of the sodium channel doesn’t close, which leads to the outward symptoms of erythema at the skin as blood is shunted to the surface. (Perhaps through the arteriovenous anastomosis that bypass the capillary bed. The sole purpose of these ANA’s is to shunt blood quickly for thermoregulation. They send core heat — re: warm blood — to the skin for heat to be dispersed. In short, they’re a cooling mechanism to protect the body’s vital organs.) What Mexiletine does, as a full spectrum sodium channel blocker, is to close the gate of the sodium channels that are errantly open. By closing the gate, you stop the symptoms. Or, at least in theory, that’s how it’s supposed to work.
Mexiletine worked immediately for me. I was perpetually flaring and within 24 hours it stopped most of my symptoms. Unfortunately, for a lot of people here it doesn’t seem to work. Does that mean they don’t have Erythromelalgia? Perhaps. It also could mean they have a different type of Erythroemalgia. Mexiletine is documented in the peer reviewed scientific journal JAMA Dermatology as having worked for extremely severe Primary Erythromelalgia. (Link included below.) The pharmaceutical company Pfizer has tested a selective sodium channel blocker in a phase II clinical trial for individuals with Primary Erythromelalgia.
The one negative to Mexiletine is that it is somewhat hard on the stomach. I have to be careful not to take the doses too close together or without adequate food, else I get heartburn.
My gym sits above the swimming pool I go to 3x weekly. I know you were not talking about swimming but I turned to swimming in the 1990s when my EM kicked in. I wasn’t a good swimmer in those days but, being an athletic person, I really needed an activity that I could do despite my EM.
All these years on my swimming continues to evolve. It is my ‘get out of jail card’.
Getting in the water is always unpleasant but the water cools the body’s generated heat, so that initial shock is short-lived. Swimming is such a joy to me.
Having forms of exercise is so important for a human body. I also do yoga-type exercises, manage to find days/times when I can have a very short cycle-ride, and, having at least 4 pair of very thin, orthotic, leather shoes on the go at any time (I change shoes as I overheat and have made sandals that dissipate heat from the sole) can tolerate short times on my feet.
I am 65 and, through a lot of support and application, keep pretty well overall, despite EM. I use Temazepam to help me sleep and Ibuprofen to help my joints from stiffening up through living my life in predominantly cool conditions.
I don’t know why I hadn’t thought about swimming as a great exercise with EM flares. I’m glad you mentioned it! The gym I go to even has a pool, though I’ve never used it. But I think I’ll give it a try. I also love to do yoga. It has been especially helpful with the arthritis I have in my hands.
), but I do them and then deal with the flaring afterwards. I hope yours is bearable too, and it allows you to continue doing everything that you enjoy doing!