- CASE FILE
Im still feeling the burn. I went out on 100 mile bike ride for a charity 6 years ago. My legs and lower back still burn. No one knows why.
ABOUT THIS CASE FILE
I’m looking for help with idiopathic small fiber neuropathy and restless legs syndrome. I was diagnosed with this over the winter.
It started 6 years ago. I woke up and everything felt normal. I participated in the BikeMS Ride the Wind cycling event. I completely 67 miles on the course that day. It turned out to be a very windy day, the last 7 miles took me an hour to complete and my legs were on fire. I have not recovered since that day. I had done the event before, recently completed a marathon and was in great shape. I knew I would need to recover but after a days things didn’t go back to normal. I’m left with my quads always burning and my hips and legs hiccup uncontrollably.
I went to the doctor after a week. I was missing work over it so I wanted to get it checked out. The very first doctor said she was really interested in finding why. She ran some blood tests and when they all came back normal so she didn’t even say anything ever again to me. My regular doctor was out on medical leave so I worked with his colleagues. I saw a few of them, it was frustrating. They all thought I was just anxious. They didn’t know my nerve fibers going to my sweat glands were dying. I was told it’s not going to kill me but it’s just going to be annoying for the rest of my life. I went to get another opinion. I sought out a functional medicine doctor, changed my diet, lowered stress. I got a few diagnosis of CFS, Lymes, PTSD, Tried almost every therapy for pain I could.
I found some relief with Float therapy. So much relief I built one in my basement and then used it every week. I ended up opening my own float center to share it with my community.
It didn’t fix everything though. My legs still burn and jump. Last November I went back to the doctors. The medical cannabis system just started in my state and I wanted to be legal. This time around when I spoke to the neurologist she wanted to take a skin biopsy test to test the small fiber nerves. This is the only test performed that showed why I was in pain. My sweat gland nerve fiber density was significantly reduced. I had proof after 5 years of people telling me I’m just anxious. Tests were ran to see if there are any know caused of SFN. SFN is a symptom of an underlying condition and sometimes can be cured. 60% of it can be managed and 40% remains idiopathic. No one knows what to do about the rest of us. I get drugs to treat the symptoms but they are extremely sedating. The pain and the sedation is disabling. The involuntary hip or leg is distracting and painful. It happens frequently. One neurologist calls it restless legs and the other called myoclonus of unknown origin.
Right now I’m seeing a pain psychologist and trying to get referrals to autonomic neuropathy neurologists but I’m not getting appointments. Mayo in Rochester said they didn’t have anything to offer.
I’m 38, I have 2 kids, doing something great for my community, but I need help. I have an invisible illness thats killing my nerves and no one knows how to fix it.