Hello! New to the group. Just starting with doctors and ruling things out. My symptoms match this to a t. Seeing stories and pictures scare me. I have redness in toes and hands, burning pain, and swelling. My legs have a prickly feeling and cramping. I have notice that exercise does make things worse but this is not something I can give up. It’s what keeps me sane. I also have a vestibular disorder and exercise is good for it. What types of exercise do people still do? I enjoying walking and riding my bike. I noticed dancing makes for big flare ups so I can give that up. I really enjoy my outdoor activities. Am I making it worse in the long run? Also, might I have the symptoms I have and those will always be the symptoms or does it always get continuously worse for people as they age until it’s so bad we can’t function?
Hello Laura.
Please don’t be afraid that what you see of others is bound to happen to you. For some this can be completely disabling while others can have this without symptoms getting worse. For some they are severe from the get go while others can slowly get worse over many years if they even get worse at all. Everyone’s Em is different and there is no such thing as expectations.
You will probable hear from those that are a little on the worse side here because those are the ones more likely to be seeking help while those with more mild symptoms are out running around doing what they always have and aren’t here quite as much.
That said I am so happy you are one who can continue to exercise. I do miss exercise. funny some people go through life avoiding exercise at all costs and this is something I miss dearly.
I am a bad person to ask for exercise options because I am one that can’t do any exercise even light exercise. I can swim if the water is cool enough not so much laps as that still warms up too much but at least I can move a little more in cool water than on dry land.
I know some people still do yoga in front of a fan as well as swimming. It all comes down to what you can still do without too much pain. if you can enjoy outside activities then by all means continue to do so! Just listen to your body and do what you can And not what you can’t.
Take care
Thank you Alina. Mine has been continually worse and I worry that means it will continue to worsen. Started in toes 3 years ago. Started in hands a year ago. Now my legs hurt as well and having cramps in my legs and toes I ride my bike but my hands are red and burning after as well as swollen. Same with walking or any other exercise. Using my phone and the computer make it worse than anything else it seems and heat hurts. Thanks so much for your response. I start grad school in the fall and I’m nervous I won’t be able to do it or work. Lots of scary things when you don’t know a lot about it.
Hi Laura,
I echo everything Alina has written. Don’t be scared by pictures and stories. There are people with EM running marathons!
I am lucky enough to have a nearby gym and pool, not that I am often to be seen on the gym floor. I have tried the treadmill and it is a lot easier than walking on hard pavements but I head straight for the pool. It’s indoor, this is England and rarely very hot and its a time of austerity so the pool is kept very cool while the changing rooms are cold year round. Before I got EM I used to complain about the cold. Now I am grateful for it. I swim a little and exercise a lot, dunking myself right under the water as I heat up and I don’t know what I would do if I didn’t have this facility. I leave the gym with a spring in my step or at least in my heart. I’m unwell this week with cold and cough and missing the pool very much.
My daughter has a milder form of EM and managed Pilates and yoga before she had her baby and had to spend evenings pureeing baby food and tidying up toys.
Thank you! I need to stay off Google with the one picture of the woman who has an arm inflamed to 3 times the size 
I thought I was the outcome. And I can live through a flare. I’ve been dizzy 24/7 for 7 years so I feel like I can put up with a lot although this is getting me down. I just don’t want exercise to make the condition worse. But it sounds like it only will for a short period of time.
Laura, welcome! I'm new here too. I appreciate your question about exercise. I'm learning my limits there very quickly. Although I've only had EM for little more than a couple months, all I can do at this point is about 1/2 hour of yoga in my cold house, and beyond that I have pain. Walking any significant distance (around the block even on a cool day) also causes a flare. Today I'd had it and took myself to the garden center so I could walk around and look at something growing and beautiful. So sick of the scenery from inside my house. I did pay dearly for the heat and "exercise" for the rest of the day. For all you who have lived with this condition longer - does pushing yourself with exercise (or really anything you enjoy doing that you are loathe to give up) make your symptoms worse over time? I struggle with the idea that I must always strive to minimize my triggers when the cost is really giving up something I love. I so miss my long walks with my dog and husband, gardening and spend all the beautiful days out of doors. For me this pain is almost worse than the physical suffering. This stinks.
snowshoe03 said:
Laura, welcome! I'm new here too. I appreciate your question about exercise. I'm learning my limits there very quickly. Although I've only had EM for little more than a couple months, all I can do at this point is about 1/2 hour of yoga in my cold house, and beyond that I have pain. Walking any significant distance (around the block even on a cool day) also causes a flare. Today I'd had it and took myself to the garden center so I could walk around and look at something growing and beautiful. So sick of the scenery from inside my house. I did pay dearly for the heat and "exercise" for the rest of the day. For all you who have lived with this condition longer - does pushing yourself with exercise (or really anything you enjoy doing that you are loathe to give up) make your symptoms worse over time? I struggle with the idea that I must always strive to minimize my triggers when the cost is really giving up something I love. I so miss my long walks with my dog and husband, gardening and spend all the beautiful days out of doors. For me this pain is almost worse than the physical suffering. This stinks.
Exercise is definitely something to keep doing! I stopped exercising for awhile b/c it made my feet worse and in the long run my feet got worse from not doing ANY exercise. I found that non-weight-bearing exercise is best. Bike riding is great, swimming for sure, yoga (maybe less of the standing poses - I take the "core" or "ab" classes), and pilates (I haven't done this, but i've heard good things lol). Good for you for loving exercise btw!!
Hope this helped! ~Kelsey
Another thing I do is cool my feet off with luke warm water in the shower before and after working out. That helps a lot!
Though my EM is probably different from yours, I can try to provide perspective. I've had EM flaring for about 3 months. I had intermittent joint pain for 6 months prior to that. The flaring hit like a truck, was completely disabling for about 6 weeks, and now is getting better. Mine is probably blood related, which sets me apart from most here. I've had phlebotomies and they've helped a lot.
I think mine will eventually go away. 3 months ago I could barely stand. Today I ran short stretches for the first time in months. At my worst, back in February, I thought there was no hope for me. It seemed like my life was over. You just never know which way it's going to go.
Somehow, someway, I've gotten better. I'm still not normal, but i'm grateful for what I can do. I keep fighting. I still believe.
Don't go gently into that good night.
I find variety in exercise is best for me. I like the bikes, treadmill, rowing machines with a non intensive warm up and cool down and my sessions are one hour in length and with a frequency of three separate hours a week. Of course, during exacerbations of my EM when my legs swell and are so painful, then exercise is out of the question as such - and gentle rotation is then all that can be managed.
I had to give up dancing and cardio kickboxing but I ride a road bike and its a huge part of my life so I put lots into planning and preparing for various temps. It’s not perfect but like you it keeps me sane.
CarterDK, that’s fantastic that you are doing so well. Very encouraging for some of our newly struck down members.
Hi Laura,
Not everyone's symptoms get worse over time. So far, mine have remained in my feet for the last 10 years. I had to stop walking a lot, but found that the eliptical trainer is good. My max time before my feet start to burn is 20 min. After that, I know I'm in for a flare! And I try and put more of the pressure on my heels vs front of foot. When I get off, I IMMED get wet towels to cool down my feet before I move on to weight bearing exercises. I also swim.
I find that if I don't stop my activities BEFORE the flare, I suffer a lot more than if I avoid them. Once I'm "flaring" it takes a day to stop the pain. But overall, I don't make the condition worse.
For me, it's better to do what I can WITHOUT bringing on a flare.
Good luck!