SFN, CRPS, POTS, CMT?

Posted by jt67 @jt67, Nov 7, 2022

My leg from hell,that's how I refer to my left leg. I have had pain in my left leg since falling off a loading dock about 18 years ago, I never received treatment for the sprain and continued to work all day on the sprained ankle then wore an air cast for a week so I could still work. I would walk with a limp, especially after squatting, I would hear the ankle pop when rising and limp for a while, also if I was on my feet too much, which was part of my job, a physically demanding job, and concrete floors didn't help.
Then in 2016 I developed small fiber neuropathy, although I also received a diagnosis of charcot Marie tooth disease after statins made everything worse. Then they dropped the cmt diagnosis and said small fiber neuropathy and no muscle involvement.
When my feet hit the floor the pain and vibrations begin. My left leg is so inflamed I can't lay on my left side. I feel like I'm balancing on a toothpick, I lose my balance, especially if I'm barefoot, showers make me miserable. This leg burns so badly I can't sleep, and the fasciculations are terrible. The longer I stand, the shakier I get, it seems to contribute to a tremor in my opposite arm, as if it's trying to balance me out. When I sit down I really feel the pain, everything below the knee burns and twitches and my body vibrates terribly. The only thing that calms it is cold on my feet, it's so bad i sometimes sleep with wet socks on. The heat sets off spasms. But I literally feel a crushing pain in my feet and legs after standing for as little as one minute. Doctors keep saying my neuropathy is mild, so why is it controlling my life?
I really think these doctors are missing something. I refuse opiates so I guess they don't take my pain seriously. Gabapentin made me suicidal and really didn't help much. I take lyrica, it helps when I'm not having a bad day. I've read about CRPS and it seems with the amount of pain in just one limb would point to this, other people have suggested POTS, but the doctors say I have pulses in my feet. The first thing I tell doctors is that this leg has given me hell since that fall. The neuropathy just intensified the pain I was already dealing with. Yet not one doctor has addressed this, there is nothing major happening in my spine or brain, no autoimmune disease, no vitamin deficiencies. Just a throbbing leg. I also have issues with my piriformis muscle and not sure if that's a contributing factor. My xrays show nothing but I guarantee if they did an MRI on my leg they would see how bad it is.
I understand why people with neurological disorders commit suicide, how long can a person live when they lose all quality of life?
Does any of what I'm saying sound familiar? I'm looking for answers and my doctors arent giving me any, just expert guesses, I've had 3 different diagnosis do far. Including charcot Marie tooth disease, which my most recent neurologist doubted. I feel like an episode of mystery diagnosis.

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Hello @jt67, Sounds like you have a lot going on. Wished I had some magic bullets for you to fix what ails you but I do know you are not alone. Hopefully other members will be able to relate to your symptoms and journey and share their experience. I did find an article from 2018 that seems to be on the same topic and you might find it interesting if not helpful.

-- 2018 Dysautonomia International Conference I: Small Fiber Neuropathy, POTS, MCAS and Vagus Nerve Stimulation: https://www.healthrising.org/blog/2018/07/18/2018-dysautonomia-international-pots-sfn-mcas-vagus-nerve/

It sounds like you have seen a lot of doctors. It also seems strange that you mention it all seemed to have started after injuring your left leg. Do you think there may be some nerve damage or compression in the leg causing part of the problems?

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My suggestion to you is to see an “anesthesiologist that specializes in pain management”. I used a teaching college for help with my CRPS. I live in North Carolina and use the University Of North Carolina. I understand that the Mayo Clinic in Florida is very helpful. With that being said try all of the Mayo Clinic’s.

Good luck!

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