Hi everyone! I’m an hEDS zebra and use a wheelchair part-time because of intense, painful inflammation in my feet, despite all my MRIs coming back clear. I’ve noticed my bad pain days feel different lately, but I can’t see a specialist until February. Since I’ve heard SFN is frequent in the EDS community, I’m curious if those affected could describe their sensations. Standard symptom lists don’t really capture the lived experience. Thanks, and sorry if this violates any guidelines! I’m exhausted and in a lot of pain. I’m not looking for a diagnosis, just personal accounts to discuss with my physician later.
I’m interested in this too due to my leg pain. It gets really bad when my inflammation flares up.
Did they MRI just your feet or your back as well? Have you checked your lumbar spine?
My feet feel the same way! I’m not sure if it’s small fiber neuropathy, but I’ve dealt with it for a long time. I should probably mention the connection to my doctor.
I’ve been diagnosed with SFN via two leg biopsies. My neurologist mentioned a study where every EDS patient suspected of SFN actually had it. For me, it feels like sporadic pinpricks across my body. I also deal with random spasms and tingling. My legs are numb from the knees down; I can’t feel external pricks, only the internal ones. I’ve lost heat sensitivity in my legs, so I have to be cautious with heating pads to avoid burns. Gabapentin helps manage it mostly, though it’s not perfect. Hope this helps, and ask away if you have questions!
I have patches of numbness on my feet and calves that are sensitive to light touch. I get burning sensations and sharp, electric-like pains. Some lose temperature sensation, others lose fine touch. In my case, I have no pressure sensitivity; I can pinch my skin hard and feel nothing.