Wheelchair for axonal polyneuropathy & ME/CFS: So freeing

Hello. I’ve been disabled with ME/CFS (Chronic Fatigue Syndrome) for almost 40 years. It began suddenly when I got a severe acute case of Epstein Barr Virus in my 30’s. From day one the EBV attacked my central and peripheral nervous system and one of the many symptoms were strong vibrating sensations in my legs and chest. I was bedridden for several years and made some improvements over the years. But the vibrating sensations in my legs never fully went away and would always be worse when tired or stressed.

About 15-20 years ago the numbness and “stocking glove” sensations began in my feet and eventually up my legs. At the same time I developed non-stop tinnitus and POTS. My neurologist did nerve conduction studies and many tests and dx’d “Severe Idiopathic Sensor-Motor Axonal Polyneuropathy (Large fiber)”.

He offered Gabapentin but I declined because I had been on Low Dose Naltrexone for ME/CFS and pain associated with that, which has been very effective. Now I’m not sure if my neuropathy would be more painful now were I to discontinue the LDN but I don’t want to find out, However, my neuropathy is still extremely bothersome because my muscles and nerves are so damaged that I’ve fallen several times the past 2 years. My balance is horrible! I’ve landed in the ER and Urgent Care twice, once with a head injury.

My neuropathy has also caused extreme fatigue which makes it hard to know whether it’s due more to ME/CFS or PN. Probably a combo of both. Plus I have autonomic issues with POTS and sleep apnea.

Long story short, walking is so difficult and exhausting now that I’ve been mostly housebound again the past few years. So, I finally broke down and got a motorized wheelchair. Should’ve done it years ago! My ME/CFS still greatly limits my activity, but I’ve been able to go to places like Costco, the Garden Center, out to eat, to the park, etc. And I will be using it for my Dr appointments. It will be good for all my Drs to understand how disabling these conditions are!

Having a motorized chair has been a true Godsend, and so freeing. I love it!! It’s actually fun! So, I just wanted to post this for anyone considering a wheelchair. Don’t feel bad, it’s a fantastic device to have plus I’m also finding that people are extra nice to me. 😊