Wheelchair

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Does anyone here use a wheelchair? Full-time or part-time? Past or present? Manual or power?

Ive been transported in manual ones. Used to use a walker.

What did you have the walker for?

I have fibromyalgia and osteoarthritis. I also have meralgia paresthetica (sp). Horrible pain in one leg and numbness. Walking was exhausting. Surgery helped, but I still use a cane for flare ups.

I no longer use a wheelchair, but I used a power chair for about half this year. I'm hoping to stay out of it as long as possible. I own a walker too, but I've only used it for pretty short spans of time. When I tried to use a cane, I repeatedly sprained my wrist (badly...once it took about six weeks for the swelling to go down!). So...no canes for me!

I know what the first two things you said are (and I have some osteoarthritis myself...I started getting it in select joints in my teens ). What is the 3rd condition you mentioned?

I have a manual one that I use when I go out in public (including work and school). I rarely use it at home unless I am not feeling well. I'd love to have a power one someday. I have a lot of trouble standing and walking without getting dizzy and falling down. The cause has never completely been determined. My family and I are still trying to get solid answers and it has been almost 10 years since I started using it. I used to fall down and get concussions and break bones a lot, so my doctors all agreed that a wheelchair was the safest place for me to be. It helps me a lot though and I haven't gotten a concussion in years.

Have you been evaluated for POTS and other forms of dysautonomia?

I have moderate POTS. It's easy to test for at home (but of course, see a Dr for proper diagnosis and treatment):

Lie down for at least 20 minutes.
Measure your heart rate lying down. (There are apps for that)
Stand up.
Measure your heart rate standing up.

If your heart rate jumps 30 or more beats (50 for teens and children), that's POTS.

I just tried the test and my heart rate jumped 49 beats. I'll definitely have to mention this to my doctor when I see him next. Thank you!

I'm glad to have maybe helped. Your story just sounded very much like POTS. There are some Facebook groups for it, if you're on there.

Hopefully your doctor can help. A lot of people, even when they are very confident it's POTS still find it hard to get medical treatment for it. My cardiologist helped me understand why: he said cardiologists tend to think dysautonomia falls under neurology and neurologists think it lies with cardiology...so there ends up being this hole where people can't get adequate help. Cardiologists are *most* likely to help. Mine has sent me to Vanderbilt Autonomic Clinic and can do follow-up stuff, but sees himself as not knowledgeable enough to help.

Lifestyle stuff that helps POTS:
-increase fluids
-increase salt (unless you have high blood pressure)
-compression socks and compression around your waist
-reclining exercise: recumbent bikes, rowing machines, swimming

I hope you get answers soon.

Very interesting! I have low blood pressure, but high bpm. I've been wearing a Fitbit for the last year which tracks my bpm. Ive noticed that my bpm leap up when I get out of bed. I just did a quick read of POTS website and will certainly ask my doctor about it. Thank you.

I don't, but my ex did. It has nothing to do with why we split, but i learned a lot. If anything pushing her in the wheelchair taught me how kind people can be with opening doors for us, and how rude they can with being nosy, taking pictures and taking the handicap spot when they had no right to.

While I never hurt my wrist using a cane (and I see how you could) I never found them comfortable. No matter how well you size them you walk a bit lopsided. I found a walking stick (Nordic poles) in each hand better. Meralgia paresthetica relates to a pinched lateral femoral cutaneous nerve. It runs from the spine, through your hip and down the outside of your thigh. It burns like heck. I dreamt of growing fangs and claws and tearing the nerve out. The surface layer on the front of the leg goes numb. You can scratch it and not feel anything. I had surgery eight years ago to remove scar tissue in the hip and that helped immensely. I was able to exercise and lose weight. Now a nerve between the same knee and my foot is acting up and I may need a brace. Ive worked so hard to get fit - for the first time in my life and I don't want to lose it. I had a pinched nerve in one elbow too that needed surgery. I don't know if there is a cause for all of this. You've done me a big favour explaining POTS. Thanks.