Tips for exercise and symptom control

Whenever I exercise, I get flares in both my hands and my feet. Although uncomfortable, I can deal with my hands (I discovered a few years ago, prior to my diagnosis, that if I hold them in a certain type of fist, it really helps with the swelling and my hands "last longer" before then get red/hot)

The big problem I have (and I'd think many other here do too) is that my feet flare up anytime I exercise! I'm trying to get into running, and even got shoes that are more "breathable", but the flares still happen. I also find that not only do I get red, hot, and swollen, but my feet also get tingly, like that feeling with some part of your body "falls asleep". It's not as bad as when, lets say, I'm sleeping on my arm wrong and feel like it's going to fall off, but I think it's a newer thing, and I really noticed it yesterday. I still try and push through my symptoms, but at some point I end up wanting to just go home so I can take my shoes off. Does anyone else ever get this tingling sensation?

Ultimately, I'm wondering if anyone has any tips on how to either keep symptoms at bay or easily relieve symptoms so you can exercise (or really do any kind of physical activity, like prolonged walking or something).

Thanks!!

hi leelee, I hope people here can come up with some great suggestions because I would love to hear them. I can't even try to push through anymore in running or walking because not only do my feet get so hot and swollen and really painful, after I stop and relax for a while, then get back on my feet, I feel like I have pieces of tiny gravel or small pieces of broken glass inside my feet. I've been really athletic my entire life, but these past few years the symptoms have gotten so bad that I can hardly walk or stand for long periods, much less exercise. especially outside!

SWIMMING! I know not everyone has easy access to this, but if you can find a place to swim, try it. Any land exercise makes my toes flare, but I can swim as hard and as long as I want with NO flaring. I think the water regulates the temp of the skin on my toes in a way that air cannot. This is a heated/warmish pool I've used, too - not cool water!

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Hi leelee, I have also, quite recently, started experiencing the tingling sensation you mention, mainly in my toes. I can no longer walk for more than 30 minutes tops - which means my favourite hobby of shopping has gone out of the window! I am going to give swimming a go again as suggested by LibbyK, although it does help keep my feet from flaring when I am in the pool, I found once I got out my feet immediately went into overdrive - but at least it is good exercise and better than doing none at all.

Hi Lindaizias - I know exactly how you are feeling - like you I have enjoyed exercise all of my life and until my EM symptoms I was proud to call myself a gym bunny! I really miss exercise as I cannot do any now without awful flare ups. I can also relate to the feeling of tiny gravel or small peices of broken glass. I can't even join my husband at the moment to take our dogs for a walk as my feet are just too painful and starting flaring as soon as I put my trainers on. With the UK presently experiencing high temperatures I am spending all my time indoors - even at a family b-b-q on Saturday I had to come indoors - and I was hosting it! So depressing!!

Have you tried swimming?



lindaizias said:

hi leelee, I hope people here can come up with some great suggestions because I would love to hear them. I can't even try to push through anymore in running or walking because not only do my feet get so hot and swollen and really painful, after I stop and relax for a while, then get back on my feet, I feel like I have pieces of tiny gravel or small pieces of broken glass inside my feet. I've been really athletic my entire life, but these past few years the symptoms have gotten so bad that I can hardly walk or stand for long periods, much less exercise. especially outside!

I also get the tingling feeling, it becomes quite severe when exercising. I have found that cycling is the best form of exercise for me, either in air conditioned gym or cool evening/early morning breeze.! I have found the longer I've been doing it the easier it has become, not sure if it's because my body has got used to it or because I am focussing more on my pushing myself. I find flares induced by exercise can be relieved by a cool shower straight afterwards. good luck

That is a fantastic idea! I have gained a insane amount of weight since I have gotten sick, I am in bed most of the day with a fan on. I have given up cooking and grocery shopping because I am so uncomfortable and I get really dizzy and nauseated. Showering makes me itch but it’s better than being on fire. I will definitely give swimming a try