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Best Exercises For Pots/eds/sfn?


TCP

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His. I am currently doing an hour a day on a recumbent bike. I do it leisurely. In 4-5 months of exercising, I haven't felt any different. No improvement of symptoms. I am either doing something wrong or it's not working for me?

I drink 3.5 ltrs of water a day. I cannot use compression garments as they hurt the nerves and make my legs freeze.

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I am suppose to start a recumbent bike..just waiting to find one at a reasonable price. I will be interested to know what others say about exercise. Wish you were having better results! Good for you for trying!!

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That's great that you are doing that much on the bike. Hopefully it is keeping you from becoming worse due to decondioning. My drs are always telling me how much worse decondioning makes dysautonomia.

Its tough to continue exercising when you don't see any improvment. I was that way last year and it often made me worse. This year however I am begining to see some benefit from exercise, maybe because of how deconditioned I've become IDK. All I can say is stick with it!

I currently am doing PT twice a week and riding a recumbant bike for 3 minutes 3 x a week (hoping to work up to 30 minutes). I look forward to trying the Levine protocol again once I'm up to the challenge.

Here is a medical journal article about his study:

http://onlinelibrary.wiley.com/doi/10.1113/jphysiol.2012.233858/abstract

My dr is also wanting me to try yoga and then possibly get involved in a study about NCS and yoga.

Hope you can establish an exercise plan that works for you!

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I am able to briskly walk a mile most days, but it isn't helping with strength, especially leg and back strength, which I have none of, but when I try resistance ball or squats my heart palpitates too bad. Was thinking of recumbent bike but to embarassed to go to the gym.

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I have always benefited greatly by doing water exercise. Not arobic type water exercise, but gentle movement like the breast stroke, or side stroke. I also take yoga type warm water exercise. This has helped my quality of life more than any medication. I also go for walks.

The recombent bike was not noticeably helpful for me.

If anyone feels uncomfortable going to a regular gym, you can join a hospital based gym/pool. That is what I always do. They usually have a warm water therapy pool, that is great for gentle exercise. You just need a Dr's note to join.

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Thanks everyone for your replies. They are much appreciated.

I have two recumbent bikes. The cheapest one I bought (my sister has it) was around £20.00. So they aren't too expensive.

My POTS/autonomic dysfunction came on immediately after glandular fever in 1984 and again worsening in 2007. I wasn't deconditioned prior to that as I was busy working in 1984 when that struck harder in 2007, I was the healthiest I had been in a couple of decades. The exercise is supposed to pump the blood back up into the torso and head and not let it pool in the limbs, that's why the lower legs are worked on.

I am mindful of not doing any weight bearing exercise because it can make the nerve damage worse, so too much walking etc is not good for me with the nerve inflammations and as yet my knees and ankles are very painful and my walking pretty poor (I use a stick for walking). I also must not stretch the ligaments because of EDS, so a lot of yoga is out. I used to like yoga. I can do some resistance and weights, though. I shall continue, as I hope in the longer term it will help. I am occasionally adding some weights but as yet my joints don't like it! I would like to swim but I live out in the sticks with no car so it costs way too much to get into the local town to swim.

I note that with exertion my heart goes bananas and I do hope that this improves.

Thanks for your help and encouragement to continue. I won't give up!

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Any type of biking makes me very symptomathic. Walking however seems to be up my street so to say. I started of with 5 minutes and can now walk for 30 minutes. Heartrate is around 100 while walking quite brisk and I usually feel okay. During half an hour I drink half a liter salted water. it's hard to say what works best, we are all so different!

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Yes, exactly. It depends what co-existing conditions you have with it. Having nerve inflammation for me means no weight bearing exercises as it damages the nerves and no stretching as it stretches the tendons/ligaments with EDS. I loved walking when I was younger but it's very painful for me now. I also liked to swim and I can't easily get to a pool regularly. I also liked yoga when I tried it but many of the exercises are stretches.

My neuropathy adviser says swimming, tai chi, recumbent bike etc are very good. The cardiologist's advise more aerobic exercises to pump the blood and stop it from pooling. The idea is to make the leg muscles work harder to get the blood flowing properly. In EDS the idea is to strengthen ligaments without stretching. It's finding a happy balance for you and what makes you feel OK if not better.

I am getting calf muscles, so something is happening!

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Hi TCP

I was going to suggest some floor exercises but you do have to be careful with POTS and EDS. So I'll throw out some ideas. What about leg marches while sitting in a chair or arm raises. Both will also pump up the circulation and you could add weights as needed. Would isometric exercises be too much? With these exercises, you just squeeze the muscle and then relax the muscle. Just be sure to start slow and don't do any more than 1 set of 3 or 5 with any certain type of exercise. It might be a little bit of trial and error to find exercises that will not over tax your system but it will be worth the effort. Not sure where you should begin with exercise level but I hunted online for exercises that a bedbound or stroke patient could do. My son had to start at this level because of his tremors. He did get sore from the exercise and he could only do exercises one day a week. He can now do exercises twice a week but it took several weeks before that happened. My suggestion is to start slow and easy. You don't want to set yourself up for a major POTS/EDS crash.

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