About a year before I was diagnosed with EM (after previously having been treating plantar fasciitis), I began putting on some weight because I would be in so much pain when I worked out. This continues to be the case today. I am leaving for college in the fall, and I would like to get myself on a healthy exercise routine that works with EM. Does anyone have any suggestions for routines that don’t make my feet flare too badly or preventions that you take before working out?? How do you deal with it while exercising?! Thanks!!
Swimming is best, if you have access to a pool of a comfortable temp for you. When I can't swim, I do short stints on a Gazelle - the lack of resistance makes it a gentler option compared to an actual elliptical (which will flare me up in a minute). I find that if I use the Gazelle in 5 to 10 minute chunks, I can stop before causing a flare. It's not intensive exercise, but doing this a few times a day is the best solution/balance I've found.
Libbyk suggested what I was going to which was swimming. it doesn't get any better than that. It is not only easy on the joints that many of us tend to suffer from joint problems as well but keeps you cool in the process. That being said not everyone has access to a pool unfortunately. LibbyK offered up another good suggestion of doing what you can in multiple shorter bursts 5-10 minutes whatever you can do but indoors in the AC. I myself am a 40 ish year old woman with a soft spot for video games and I have an Xbox 360 with Kinnect. It has games and designated exercise programs you can play on it. It uses a camera to track your body and control the character on the tv. You can play Dance games or sporting games. You can even play a few adventure type games all while in your living room! You move side to side, squat, jump .reach everything you would do in a work out but in the form of a game. I make my house very cold and it is private so I can wear as little cloths as needed ! I may only be able to do 5 minutes at a time but I can do it a few times a day on a good day! They also have actual aerobic and strength training programs that track your progress but I prefer my exercise to feel like play.
No. I don't work for Xbox. I just really enjoy it and it is good for those that can do almost nothing all the way up to a vigorous workout for those that can do more. That and it is compact so you can take it with you to college because it doesn't take up all of the room of a large piece of exercise equipment. By far swimming is the best if you can get to the pool because you can do it longer thanks to the cooling effect.
I hope you find something that works for you. It is great you are still trying to keep fit. It is easy to stop when it gets so difficult with EM. I know... I fall on and off the wagon myself. It is difficult enough when you don't have EM to keep it up!
Good for you!
Take care,
Alina
This is a subject close to my heart because I love to exercise and EM is NOT a good team player! Biking is great so I take advantage of that when it's cool and completely cloudy but if it isn't, I must limit it to short bursts. I can walk or run if I do it before or after daylight and have time to cool down afterwards. Indoors, I always work out in front of a fan with the house as cool as my husband can stand.
I have a question for anyone, too. I am used to (or have learned to accept) most of my EM conditions but one. At times my ear(s) will be painfully hot and red. Given that anything that's a vasodilator can trigger this along with horrible flushing, I'm curious about what would be considered the opposite of a vasodilator. While reading about migraine aids that constrict blood vessels, I became curious about triptans. Has any one ever tried Imitrex, Maxalt or any triptan?
Unfortunately I can't try those because I have such severe Raynaud's / pernio it can be dangerous for me but it just makes sense that it could help. I am trying to remember.....I could be wrong...I think I have heard of people trying this and having some sort of back lash flaring after relief. That is others had just relief but some had relief then worse flaring afterwards. There are so many meds out there it can be hard to keep them straight! I better just leave this one to people who have actually tried it! HA!
Your comment about Raynaud's makes sense because I had a real problem with that after taking Propranolol. I will keep that in consideration as well as the chance of backlash flaring. I recently tried Mirvaso for facial flushing but had to quit because of horrible rebound flushing. Don't want that! Thanks!
Way back when I was taking one of the triptans -- amerge, I think it was, no longer sure -- I first experienced the red flushing on my trunk mostly. Triptans can have that as a side effect if you read the patient information sheet. I have chronic migraine and have tried just about every drug known to science to prevent or abort migraine, till docs decided I needed low dose opiates. I sometimes wonder if the triptan was a trigger for EM but it was at this time I started to experience a cascade of different health problems that were, 4 years later, diagnosed as POTS and EM. So, probably, it was coincidental.
I have been doing yoga and I love it. But I do it in my home, where it can control the temperature, and use a fan if I need it. I have EM in my feet, and it’s one exercise that doesn’t require shoes! Plus, you are constantly re-directing blood flow, which, for me, is a good thing!
Oops I just realized I responded a few posts up to a post about vasoconstriction meds. Sorry to get the discussions so jumbled up! This one was suposed to be on exercise! Sorry 
Hi,
When we moved away from the beach and swimming I continued to do mat pilates -- with a fan -- and it kept me fit enough and I had great core muscles. I did it for about 3 years, all told. I-d had back problems for many years and pilates seemed to help. But then my back finally 'gave out' and I needed a laminectomy and I've not been able to do pilates at home anymore because my back, despite the operation, still gives me a lot of trouble and I'm scared of making things worse. If I had the money I'd probably have a qualified pilates instructor come to my home and restart a mat pilates program -- a professional that could make sure I was doing the exercises correctly and not aggravating my back problems and I could exercise in the cool in front of a fan. I really need to move back closer to the ocean and swim. It was the best of all exercises. I can't swim in big pools. They are all heated to some degree, more in winter, less in summer. But either way, after a few laps I get way too hot and need to get out. I have to swim in the ocean.
blue
blue said:
Hi,
When we moved away from the beach and swimming I continued to do mat pilates -- with a fan -- and it kept me fit enough and I had great core muscles. I did it for about 3 years, all told. I-d had back problems for many years and pilates seemed to help. But then my back finally 'gave out' and I needed a laminectomy and I've not been able to do pilates at home anymore because my back, despite the operation, still gives me a lot of trouble and I'm scared of making things worse. If I had the money I'd probably have a qualified pilates instructor come to my home and restart a mat pilates program -- a professional that could make sure I was doing the exercises correctly and not aggravating my back problems and I could exercise in the cool in front of a fan. I really need to move back closer to the ocean and swim. It was the best of all exercises. I can't swim in big pools. They are all heated to some degree, more in winter, less in summer. But either way, after a few laps I get way too hot and need to get out. I have to swim in the ocean.
blue
I have had EM since 1998 and have accepted the symptoms without meds as I always experience side effects. I started yoga in 1991 and have carried on gently stretching to keep my body supple. I noticed that the breathing techniques in yoga helped a great deal. Previously I had been breathing far to shallowly and the deep breathing helped the EM tremendously. Has anyone else found deep breathing helps their EM. It must help to get oxygen flowing in the blood and dilating the capillaries. So yoga is good. Deep breathing is good. Are their any members who have learned that they have not been breathing deeply enough?
Think how opera singers learn to breath deeply to be able to sing. Lyn, Cape Town
Hi Blue. Have you tried swimming in the designated laps pool at the gym? They keep that pool cooler because swimmers are usually doing serious workouts in there all though I go in slow times and just swim slowly.
Hi Alina,
I used to swim in Olympic size pools, along with the other lap swimmers, before EM and was fine. Before I was diagnosed with EM the few different pools I used to swim in (one at my old university, another one outdoors -- beautiful pool, and another at a gym (it was 25 metres, not 50 metres) and all were fine until I developed EM symptoms. The first time it happened to me I got out of the pool and asked one of the attendants why the pool had been overheated. She told me it wasn't. I didn't tell her, but I didn't believe her. LOL.
But I soon learned it happened with all the pools I swam in from then on. It was one of those weird things that happened to me when I first started getting EM -- I'd just get too hot in the water after a few laps and I would feel like I was swimming in a warm bath. I'd have to get out and my face would be lobster red. Before symptoms started showing up I never felt too hot in a pool. I used to use them in winter when the weather got too cold to swim at a beach. Doing laps of the beach, (god, I can't believe 4 years ago I was strong enough to do that -- I really have to get back to ocean swimming), keeps me cool and unlike other swimmers I love it when I hit a cold spot in the water. LOL.
The problem could have to do with 'temperature disregulation' that can be a symptom of POTS, which was diagnosed at the same time as EM. It can be hard, sometimes impossible, to untangle if it's POTS or if it is EM that is causing the problem when it comes to any time of temperature question. I do know that a subset of POTS patients do have EM as well.
On the pots forum I sometimes post to I've met another person who has POTS and EM, together. She said that specialist told her a 'small subset' of POTS people have EM. There's a connection. Not that it does any good to know this treatment wise.
I think it's wonderful that you are swimming. It's the most rewarding of all exercise, I find.
Alina Delp said:
Hi Blue. Have you tried swimming in the designated laps pool at the gym? They keep that pool cooler because swimmers are usually doing serious workouts in there all though I go in slow times and just swim slowly.
Here's something interesting! I am just the opposite - my hot skin makes the water feel freezing cold in comparison. I can't handle swimming in pools cooler than about 84 degrees F or I get so cold I am too tense to move around (if I can even stand to get in all the way). Maybe it's because I also have Raynaud's... even though that doesn't act up at the pool, my temperature sensations go crazy in both directions. My ideal pool is 86-87 degrees F, which is incredibly hard to find.
blue said:
...The first time it happened to me I got out of the pool and asked one of the attendants why the pool had been overheated. She told me it wasn't. I didn't tell her, but I didn't believe her...
Hi, Sara--
I hope with the foot pain you are still able to walk a little. My saga also started with plantar fasciitis, then progressed to small fiber neuropathy in my feet, then up the legs and on into my seat area and then my feet and hands flaring with the red extreme burning. I can't swim because it irritates my legs and then having to walk back from the pool and stand while taking a shower is too much on my feet. I rode a stationary bike for awhile at very light tension which was helpful until I developed the seat pain.
Working out at a gym using the machines with very light weights and higher reps plus some floor exercises is the only kind of exercise I can do. I try to walk a little if I can rest my feet afterwards. Also, if I have too much pain I add Aleve to my regimen of meds for a few days and this helps take the inflammation down. It can cause swelling and weight gain so I use it only as needed.
I have to watch what I eat to keep my weight down because extra weight makes the foot pain worse. Eating very much wheat and sugar also is irritating for me.
Good luck and do try to exercise, eat healthy and try to prevent very much weight gain.
Like Libby K when I first get in I am shivering with cold! then after moving around a bit it quickly becomes more comfortable. I guess pools work for me because I don't try and swim laps like I used to. Anything that gets your heart rate up enough is going to generate more heat than the pool can cool. I gently swim ant a leisurely pace. I know it's not a great heart pounding workout but much better than my recliner gives me!
I also use the floaties the gyms usually have available to do strength training. I did some physical therapy in the pool where they taught me some good exercises using the common gym pool equipment. I still couldn't go all out like I used to but I will take what I can get.
The ocean swimming sounds lovely. How do you handle getting to and from the water? The walking through the sand? on a warm day? That part sounds awful but the swim sounds wonderful! Too bad this isn't an option for me either way with no beach near by. This will sound strange but no beach with water warm enough!!! I live about 5 blocks from the beach but up in Washington State USA and the water is probably in the 40s . I like my cold but that is a bit much!!!
Take care,
Alina
LibbyK said:
Here's something interesting! I am just the opposite - my hot skin makes the water feel freezing cold in comparison. I can't handle swimming in pools cooler than about 84 degrees F or I get so cold I am too tense to move around (if I can even stand to get in all the way). Maybe it's because I also have Raynaud's... even though that doesn't act up at the pool, my temperature sensations go crazy in both directions. My ideal pool is 86-87 degrees F, which is incredibly hard to find.
blue said:...The first time it happened to me I got out of the pool and asked one of the attendants why the pool had been overheated. She told me it wasn't. I didn't tell her, but I didn't believe her...
Hi alina,
I'm not handling swimming at the moment because we moved away from the beach. At our last home I used to only have to manage a short walk to and from and there wasn't much sand to worry about. When my son drove me to the beach about a month ago, I was able to walk a short distance along the 'boardwalk' then I just had to go down a few stairs and walk along wet sand until I was in between the flags, and 'safe' to swim. Walking along wet sand has been okay for me so far.
H
Hi Libby,
It is extraordinary how different we can be from each other.
It's also extraordinary how different I can be from day to day. I've only got pressure redness on my skin at the moment but my skin is very hot and my clothes are hurting. A slight flush on my face and neck. If I complained to a doc now about pain and burning I have my doubts they'd believe me.
blue
LibbyK said:
Here's something interesting! I am just the opposite - my hot skin makes the water feel freezing cold in comparison. I can't handle swimming in pools cooler than about 84 degrees F or I get so cold I am too tense to move around (if I can even stand to get in all the way). Maybe it's because I also have Raynaud's... even though that doesn't act up at the pool, my temperature sensations go crazy in both directions. My ideal pool is 86-87 degrees F, which is incredibly hard to find.
blue said:...The first time it happened to me I got out of the pool and asked one of the attendants why the pool had been overheated. She told me it wasn't. I didn't tell her, but I didn't believe her...
I'm sorry that you had to move away from the beach Blue. Yes it makes a huge difference walking on wet sand. I pictured you having to walk that long walk through the dry sand and had no idea how you did it! You wouldn't need a workout after getting there anyway! I don't know how close you live to a lake but I just thought of that as a possibility. I know they are usually very cold and provided you can drive right up to it no long walk either! Probably not something close enough to do on a regular basis but maybe every once in a while if there is one close enough.
Take care,
Alina