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Which POTS patients use wheelchairs  

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I have a push-style wheelchair that was purchased in the early 1990's. I had family push me about it in when they visited me and we wanted to go out. I was at my worst with ME then. After about 1997 my walking improved and didn't use it any more. I am now very unwell with ME/POTS/Autonomic and Peripheral Neuropathy and most likely EDS. I rarely leave the house and use a stick to walk short distances. I would use my chair again if needs be. I cannot propel myself so use the sort with small wheels. I never felt too proud to use it as it was a necessity. As someone who used to worry about what other people thought of me, I have found that being ill and just surviving has changed all of that. Needs must!

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  • 2 weeks later...

I've started using them recently and it's been very nice to get out and about a bit again, after over a year of going nowhere. I wanted one before that but my parents were very against it. Thing is though that I need to be pushed cos I'm not strong enough atm to push myself around really. I do feel quite self-conscious because of that. I would really like an electric one to gain a little bit of independence again, but I'll have to earn and save up the money.

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Tyler has a wheelchair with the power wheels. He was using an old stand by for a year but just did not have the strength to push himself very far. He would wear himself out and then someone else would have to push the chair for him. He is thankful for the powered wheelchair but looks forward to being able to walk again if that's possible. Our cardiologist wrote the prescription and then our physical therpist had to get the approval from the insurance. It took about 4 months before the insurance gave approval but it was worth the wait. Tyler has not walked since January 2013. However, even when he was able to walk, he could only do so for about 10 minutes before his tremors would start from waist down.

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  • 2 weeks later...

I am following this thread regularly - and more and more start to doubt whether my diagnosis of Pots/dysautonomia (+small fiber neuropathy) is actually right... (Though confirmed by 2 TTT and lots of "Poor Man's TTT).

So many of you use a wheelchair - and I would do so immediately, I am certainly not too "proud" for it!!

But it wouldn't do anything for me :-((. When I was in hospital last week, I gave it a try: I had to get to a laboratory for some tests and asked to be brought there in a wheelchair. All in all I had to stay in that chair for about 35 minutes - and afterwards I felt awful, so extremely "potsy", just because of being (sitting) upright for this amount of time...

The following day I decided to walk to this lab (without having a test done there, just as an "experiment" for myself). To get there and right back to my room took me altogether 15 minutes of walking. Afterwards I felt actually less bad than the day before in the wheelchair.

So - what exactely does a wheelchair do for you?? Sorry, if this question sounds stupid, but I really would like to understand the difference between all of you and my condition...

Have a good day!!!

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I believe people use wheelchairs because they feel dizzy and symptomatic as soon as they are upright and feel better sitting. I don't know for sure and hopefully people will share experiences.

Just to let you know though, that I have the same diagnoses and feel as you do. I am ok sitting if feet are up but other than that feel better fast walking (only short distances) as it keeps the blood moving. I feel even better cycling along than walking and this is how I get about outdoors. I'm not talking uphill or anything like 'serious cycling' just steady leg moving bike along.

Before I got to see an autonomic specialist, other doctors viewed this as mad and it sounds odd certainly, however the autonomic doctor understood immediately and explained how movement keeps the blood moving around when a main symptom is blood pooling without extreme dizziness. It's all odd!

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I am working on getting a wheel chair. I feel a little guilty about it, because I do not need it all of the time. I have fainted, but not a fainter. I am like Goschi though that sitting upright can be as bad as standing up. A reason I cannot drive. Even if my BP is not bad, I get very dizzy and feel awful. Can't see, can't think, etc.

What I want the wheel chair for is to be able to go shopping etc. with the family. That and water my plants etc. on bad days. It may get me closer to being able to work.

I am looking at reclining motorized wheel chairs.

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Just make sure you can get the wheel chair to fit in your vehicle. Measure the doors in your house. Tyler has a wheelchair with powered wheels. The chair breaks down to fit into our jeep. It does not recline but it meets his needs for right now.

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  • 4 weeks later...

For my son, our cardiologist wrote the prescription. My son's condition got worse after he had the flu in January of 2013. He went to physical therapy for 6 months and was unable to regain his strength and mobility. With the testing and documentation from our physical therapist, our insurance paid on the wheelchair. We had to have proof of why he needed the wheel chair. He has one with powered wheels. My son does not have the strenght to push a manual wheelchair.

The testing for his antineuronal antibodies was done last year after he had the flu. Not many doctors will test for these things unless your life is endangered. The symptoms from these antibodies can keep progressing and eventully cause encephailities.

BTW I tried to send a PM but your box is full.

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  • 3 months later...

I still don't use a wheelchair (though I would, far away from being too "proud") - at the moment, I am in a state where I feel much better when I am standing/walking (though not for very long times) instead of sitting.

When I walk short distances, I feel even close to normal. When I have to sit down, I start to feel nauseous and my legs go numb and achy very soon.

So strange, how symptoms are changing over time...

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  • 11 months later...

After fighting with my pride I broke down and used a wheelchair for the first time when I went to Disneyland with my family last spring. As much as I wanted to deny it there was really no way I could have gotten by without one. It was the best decision ever in spite of feeling very self conscious about it. Unfortunately one just has to suck it up sometimes to make for a more tolerable and more enjoyable I might add situation.

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Hi Katie. I'm so glad you used a wheelchair as well and had a fun Universal outing with it. I'll admit getting over the mental aspect of it is difficult but once you realize how much more fun some outings can be makes it easier to accept. I was just talking with a friend earlier about the benefits of motorized scooters. I'm actually considering getting an electric wheel put on my bicycle. I took my mother on a senior event the other day and way overestimated my capabilities. It was a huge reality check.

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