Hi everyone,
Does anyone else get pins and needles/tingling when they walk? This is a fairly new symptom for me. Also has anyone been able to live with this disease and sill maintain a happy fulfilling life? I am sort of in a rut thinking about this right now and hoping it goes away but researching it is telling me otherwise. Need some uplifting stories!
@graceee06 I also get tingling sensation even when I’m not walking. Today my thighs are burning like hell, I feel needles and pins like small electric shocks all over my body. I can’t figure out what has caused this terrible flare. I ate the same things like the day before, I was just standing for half an our. I can’t give you any word of comfort as I am in an acceptance phase of the disease like you. I can’t imagine myself living like this for the rest of my life. I pray for EM to go away, but it’s getting worse every day. I don’t think I am mentally strong enough to accept the limitations. In my opinion it depends on the character of the person. Some people live normal life and get into a remisson. Don’t give up, with your age and good dedicated specialist who will treat you with every single medication available, you have a great chance to live a happy normal life. One boy Ryan Junes is completly EM free, after received IV Lidocaine infusion.
Here is the video link: https://youtu.be/ULydWVhsnk4
Be strong, take care Frankie
Grace,
I am young, 24, and although EM had a big impact on my life for around the first 6-9 months (started 2/2018, first medication I found that helped was 10/2018). I was able to find medications and herbs (cyproheptadine, propranolol, and mexiletine) that help drastically reduce the symptoms in my feet and caused the symptoms in my hands and ears to completely disappear. I have very gradually been improving over the past 7 months or so and plan to attend medical school starting in August and have no intention of taking disability during it. I still have a limit on walking, I tend to have minor flares if I walk in heat for more than an hour or so but the symptoms subside very quickly if I sit down for a few minutes. But I can take hot showers now with no change in skin color, sleep with down covers every night, workout regularly, and wear crew socks and shoes daily. Things are improving each month or so. It is slow but over time it’s been very significant.
Although I really appreciate this forum for what it is, take everything you hear with a grain of salt, especially the negative stories. A lot of people here are self diagnosed and could in fact have something completely different than EM that manifests with a similar symptom complex but has a very different cause.
What helped me a lot was believing that there was treatments out there that could help me. If I had any advice it would be to find a good doctor who can 1. diagnose you and 2. is willing to safely try stuff with you. There are some great cumulative review papers (I posted one awhile ago and then http://www.medicationsense.com/erythromelalgia.html has some) and guides out there to navigate the treatment process. Ruling out serious secondary stuff is a great first step and then just slowly chip away at it. Over time, you should find stuff that helps but it may take awhile. I got lucky, I tried cyproheptadine out of the blue and it helps me a lot. And I’ve gone from there and found 2 more medications that help me a lot. Just be patient and diligent and everything you try, have a reason to do so and take note of it. I have tried medications that made me worse but after stopping my symptoms improved again. It does get better and this forum tends to have the most severe and refractory cases. The doctor I see treats quite a bit of EM patients so it seems to be more common than it appears at first.
I should also add that exercising regularly seems to help reduce my symptoms. I am not sure why that is but it is noticeable. So maybe trying to find ways to exercise, swimming and biking are easily tolerated, it might be worth a shot. Good for the mental health as well.
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You made a lot of good points but this is probably the most important.
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Hi Grace. So sorry to hear about your difficulties, and so young! 
I have pins and needles too, esp. at night when lying in bed. I haven’t found a lot of relief yet, but I’m not giving up, and I hope you don’t either!
I’d like to share a few things that my docs at Cleveland Clinic have told me. I’m not offering medical advice here, of course, but just telling you what my docs have told me. If you decide to pursue any of these, pls check with your doc first! (1) try taking one baby aspirin per day (81mg) for a couple weeks. If you don’t see any difference, go ahead and take a full-size dose. It can help alleviate symptoms in some people with EM. (2) biofeedback also works for some people. I haven’t tried this yet personally, but it’s a way to regulate your body’s automatic functions with your mind (as far as I understand). (3) My functional medicine doc at Cleveland Clinic had me do a test of gut bacteria. Turns out I have severely low good bacteria. I’m now taking 4 different supplements (including probiotics & pancreatic enzymes) to help nourish the gut. Too early to know if this will help reduce symptoms. (4) I’m also on a very strict diet, per my functional med doc: no grains, no sugar, no alcohol, minimal dairy. Once my gut is healthier I’m going to try intermittent fasting. That is a way to shed unhealthy cells and promote health. Lots of people on Youtube talk about this and it looks promising. (5) My chiropractor recommends pulsed electromagnetic therapy. This is a very popular therapy in Europe for some serious illnesses, but I can’t find any research about this being done to help EM patients. So not sure about this but it sounds intriguing and I will pursue it at some point. (6) All my docs say exercise if I can stand it. I can’t walk much, but I’ve found that I can use the elliptical machine with minimal discomfort (go figure!). Find an exercise that you can tolerate (swimming?) and then get your blood moving. (7) Meditate daily! This really helps reduce stress and pain. Check out Lissa Rankin’s book, Mind over Medicine. I love this book. Lots of books out there on the power of your mind.
For me, I’ve found that as long as I’m actively working to make myself better, I feel better. Once I start thinking that it’s hopeless, that’s when I get depressed and feel hopeless. I reject doctors who tell me I’ll never get better. I do truly believe that my disease offers me a chance to slow down and take care of myself like I’ve never done before, to appreciate life more fully, to feel gratitude for small things that I took for granted before. I figure I have a choice in what I believe. It’s either: (1) I’ll never get better, in which case I’ll give up and get depressed and I certainly won’t get better, or (2) I can get better if I work at it, in which case I’ll live with hope and gratitude—and even if I don’t get better physically, I’ll feel better emotionally.
Wishing you all the best!
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Hi, I don’t have pins and needles but I do have a bit of an uplifting story. I broke a toe four years ago and within a month, had EM. It took a few years to get a diagnosis and in that time, I became disabled. Couldn’t walk very far. Could not even trick-or-treat around the block with my kids. I am a professor and would sometimes give the class a quick break and run out in the snow or cold to cool off my feet. The pain was debilitating.
I got diagnosed about 15 months ago and am now doing really well. It took about 9 months for my doctor to settle on a med regimen but she found one that works pretty well, so well that my family and I are in Paris this term where I walk 4-5 miles a day. I haven’t flared much since we got here in January. It is warming up and with that comes flares but they are not as painful or as long lasting as they were. I’m not hiking in the mountains or skiing or anything, but I did get my mobility back.
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Thanks for sharing this!