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randochikn

Updated 11mo ago

Advice on Choosing a Mobility Aid for EDS and POTS

What should I do to get a mobility aid that may benefit me? I am 18 with EDS and I want to try a mobility aid. I have looked at the different types and seen the positives of each and why people use them, issue is I am unsure! Plus they are expensive. I may be doing PT this summer and hope that I can get a PT who can help me with such decision. With my POTS having the option to sit might be good so I’ve thought about a rollator. I have issues with my ankles and feet with pain and looseness so I know arm crutches may be good, but I am unsure of the effect on the wrists (my wrists are very bad, the first symptom of joint pain I had at age 13!). I want to hear your opinions and advice going about this. I known it’d be worth it to do, just need to be sure before I commit! Thank you!!

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AI-generated answer based on the text from previous posts and comments

One person mentioned that they started using forearm crutches, which took pressure off their lower joints and provided support when fatigued or dizzy. They didn't consult a doctor but did their own re...See More

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FreyaB

1y

Hi, I dont think I can personally help you unfortunately however I would also live to hear responses as I am 18 with fibromyalgia and looking to go to uni this year.❤️
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randochikn

1y

That is okay! I am also looking to go to uni this year too and it would be very helpful for navigating the campus
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goblin49

1y

Hey! I've used quite a few different mobility aids and also have wrist problems! Current fav is my cane: super cheap and easy as-needed aid (I have a collapsible one so I just bring it with me everywhere). Sometimes isn't the best for my wrist. Forearm crutches: definitely better on the wrists but bigger learning curve. Might be harder getting used to with POTS, but if your using something like this all the time I think it would be worth it in the long run. Much more expensive, but a higher price usually correlates with quality for these things so the investment is more worth it. Also check out zebra crutches since they are meant for hypermobile wrists! I don't have any experience with a rollator, but I can see why it would be nice to have a device you can sit in. It might be nice to have something smaller though that you can take with you always, and may be a better way to ease yourself into using a mobility aid full time. Hope this helps!
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MilliePatronum

1y

I am 28. I started using crutches or a walking stick at 21. I wish I started using them sooner. They do help me alot and you can get some nice walking sticks on amazon. My favourite is my zebra walking stick. Makes me look less like an old lady. Be careful though as sometimes it then causes issues in my wrists and shoulders
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Knees

1y

I am quite young as well and use a cane in my every day life. It is very helpful and I totally recommend getting one if you struggle with your legs and hips. I have used a wheelchair before and it has helped quite a bit as well. If you need a mobility aid get one! I got a cane to try it out when I was quite a bit younger and I used it on and off and now I use it every day. Maybe you could build up to using an aid full time if you are struggling with the idea of it. Also if there is discomfort with whichever tool you are using, there is usually different styles of handle bars, arm rests, or something to sit on.
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StrawbJam

1y

Around the same age as you with suspected Ehlers danlos along w chronic fatigue n some fun stuff! I use a walking stick personally but they aren't great for if you get dizzy regularly or don't have a weak side (you're meant to use a cane by holding it opposite to your weak side and whenever you move weak leg the cane goes with it), crutches are basically just next step up but you still have a bit of a fall risk with dizzy spells compared to a rollator having a seating option to it! The concern of wrist and shoulder issues is extremely valid especially for crutches as you're putting a lot of pressure on them and I have had recurrent wrist pain and shoulder dislocations using them previously but you can avoid that via picking good quality ones (one brilliant example while pricy is coolcrutches on Instagram) - the one thing that will guarantee crutches hurting your wrists is using ones supplied by gov/hospital as they are very poorly designed for long term use <3
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Mirajane.Strauss

1y

I bought a walking stick from neo walk and it's amazing. They're custom and have can have ergonomic handles. I've been in a lot less pain since buying it
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BennyTheBirdMan

1y

I'm 20, I use a wheelchair most of the time but sometimes use forarm crutches or my walker
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Drake_Cake

1y

I'm 18. I pretty much use my wheelchair anytime I leave the house. I use the pride go chair and found an amazing deal for it on Facebook marketplace. When I'm in my house I use my crutches. If price is an issue then I'd suggest looking on Facebook for things in your area. The good thing about that is you can test them out yourself before actually purchasing the item. You'd be surprised how low people are willing to go on some of the items they're selling. I got my wheelchair for more than half off.
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Mickey1210

1y

Forearm crutches work for me but if you feel you need more help a rollator so you can sit when needed
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marshmallow

1y

I started off with a cane but switched to a rollator a while ago, the cane bothers my wrist and the rollator is really good for me since I can sit, I'll be getting a wheelchair soon that will hopefully improve my quality of life!! Good luck on your mobility aid search!!!
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mthebrave

11mo

If you get a walking stick rather than crutches, then ergonomic handles are the best for hand pain. Rollators are really helpful on days where walking difficult and then electric wheelchairs rather than self-propells would be useful and as an ambulatory wheelchair user it's important not to get too reliant on the wheelchair but helps during flares and long-distance travel. An OT and your local NHS wheelchair services may be able to help you further. X
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mthebrave

11mo

Ps. I have Ankylosing Spondylitis and EDS and the wheelchair makes the Ankylosing Spondylitis back pain worse. I've seen some people with POTs have wheelchairs so their legs can be lifted up for blood circulation , and compression socks are really important for wheelchair users with POTs. It really is trial and error to see what helps you the most 😊 x

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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