Hey everyone hope you are all doing well. It’s been 8 months now that I’ve had EM. I still haven’t found a cause which I’m sure most of you haven’t. Not trying to throw myself a pity party just need some advice. I have found that this has put me in a hopeless spot, my life took a 360 turn since I’ve had this. I don’t go out anymore, I’m normally always indoors by a fan. I’m starting to stress here lately because I lost my job working contrusction, it’s almost unbearable to work manual labor especially outdoors in this Texas heat. I’m afraid I’ll never work or have a normal life again, and I’m not someone who can just sit around like this, I’m going stir crazy. I was just wondering if y’all had any tips or advice to make this more tolerable, physically and mentally.
While I could not have worked construction with EM, I found ways to cool my feet and body that are portable and let me leave the house and go on vacation. I froze bottles of water, the little common sized ones. And then because direct ice is very bad for us, I put each frozen bottle in really thick and fluffy sock. So a little cold comes through. I would always have at least 2 so I had one under each foot. Often I would have 2 to 4 more in a tiny little soft ice chest to last me through the day.
I also bring a squishy pad or 2 that were originally stadium seat cushions: https://www.walmart.com/ip/Ozark-Trail-Seat-Cushion/49332908?variantFieldId=actual_color
I have lots of those, when on vacation I have them around my bed. Also, I use them.at home.
When I would get in a car, I put down the cushion in the center and two ice bottles in their socks off to the edges. I keep my feet in the center until they are burning and then I lightly touch them onto the cold bottles. My shoes are easy on and off, so I am always taking them off. This also works great for movies. In movies, I put my shoes next to the bottles to keep them from rolling away, with the cushion in the center.
As for the overall body heat common with EM, I use those evaporative cooling devices like this:
Just be careful how much moisture you have your skin around. Also, these work less in humid areas.
And these little fans:
Getting good shoes that are very open and soft and dissipate heat as much as possible, and are easy on or off, really helps. A lot of people say Keene, but Keene are way too hard for my feet to tolerate. I use old easy spirit heelriser sandals often, but also bare traps currently, the ones with a honey comb looking texture on the sole. They seem to mostly be women’s but a few of the styles seem unisex.
Tip: when you find a great shoe, buy as many pairs as you can afford at all. Because a good shoe for EM is worth it’s weight in gold.
I keep a little bottle of good lotion in my bag and i sometimes put that on my feet when they feel like they have a dry burn.
Keep trying until you find things that work for you. Even when there are things in the way of you living your life, don’t let them stop you from finding adaptive solutions. Do not give up everything. Find ways to get out of the house. Keep trying new things and new treatments, even when you are weary of trying. Every time something works or helps, it makes us feel a little better.
And remember, when other people ask you about your cooling devices, you can either feel shy and bad, or excited at the opportunity to spread awareness. Because awareness gets research into cures funded.
Every time you explain, “I have a rare condition called EM, or erythromelalgia. It makes my feet red and hot and like a bad 2nd degree burn…” or: "you know that game, the floor is lava? Not a game for me. I live it.
It is really true that any of the people who are annoyed with your condition or cooling devices are not people who matter. The will hopefully, eventually find a bit of humanity once they have grown up a bit. Regardless, don’t let those types keep you from getting out of the house when you can…
Good luck! Keep trying.
have you tried yoga/meditation? I found it helps and there are loads of videos you can get on demand. Also are you on any treatments?
What have you tried so far as treatment?
Not real sure where you live, but you might seriously consider making an appt. at UTSW w/ Dr. Lauren Phillips in Dallas. She’s awesome. I dealt with something very similar and felt the “hopeless” feeling, trust me. After 3 years of trying various treatments, below is what has worked for me:
- Butterbur - 3x a day. You can get this at Natural Foods, Natural Grocers, etc.
- Feverfew - 3 x a day. “”
- Venlafaxine XR (Effexor) - 150 mg. Takes several months, but it’s worth it!
- CBD Oil at night (NuLeaf Solutions). This is Canabas Oil, but NO THC and 100% legal. 10 drops under my tongue.
- Propranolol 20 mg in the morning.
Sounds like a lot, but honestly all very benign drugs other than the Venlafaxine. The Venlafaxine is a great medication, but you can’t just stop taking it and you have to slowly achieve the total dosage over a few weeks. The Butterbur, Feverfew and CBD oil were are all natural items. The only two actual prescriptions I take are the Venlafaxine and Propranolol. I am not 100% free of flares, but i am active and can do things outside with no problem most of the time. I have found that wearing compression running socks and tennis shoes really help believe it or not. I tried the whole sandals , no shoes, etc. All that did was make me continusouly anticipate a flare. The more it was no my mind, the worse they got. Don’t lose hope! Keep pushing yourself through this. I thought my life was over, seriously. Too young. Keep going until you find what works for you!
Hey, yeah, I completely get the feelings of despair. I really suggest you let your doctor know that you’re experiencing these issues. I see a pain psychologist and I’m practicing mindfulness meditation, which has been so helpful to get me through life. So have you thought about community college? You wouldn’t have to be in Class for too many hours a day. I teach at a community college and I teach barefoot–I’m totally open about my EM since I have a room full of people staring at me and it’s pretty glaring that I’m not normal. Ha. I also bring my little blow up foot bath for when I’m burning up. My students and colleagues are always supportive. Is there a career you’d consider going into that would accommodate your needs? I work part time and it still is super hard sometimes but I’m figuring out how to survive this. Being open about it has been helping. You’re going to survive it too.
Hi! I’m 18, and I’m pretty excited because I barely ever see other people my age here! I definitely get the struggle with maintaining a social life with EM. I have developed a few tips and tricks to live my life with EM! Please message me back, and we can exchange snapchats or something!
Hey all sorry it took so long to reply I’ve been in a hopeless spot lately. I don’t have health insurance so I haven’t started any treatment. Usually just avoid overheating and use cool water and fans. I get regular blood tests to rule out secondary causes but as far as seeing a specialist, that’s out of the question.
I have seen a lot of doctors/specialists. It’s mostly turned out to be a waste of money for me. I’ve been living with EM my entire life without real treatment. No need to be hopeless! I get the feeling, but I promise you life can still be enjoyable even with EM. We just have to be umm more creative?
The lack of insurance shouldn’t be an issue. Open enrollment through the Affordable Care Act begins November 1st. If you do not have the means to afford health insurance, you will qualify for either Medicaid or a federal subsidy to help you pay for a private health insurance plan.
Do not feel bad about asking for government help. You have an extraordinary circumstance. Help is there for just such a circumstance.
If you have questions, feel free to ask.