Hello.
I was diagnosed with SFN. It started about 2 years ago. But I really don't know if I have this disease.
2 years ago, my median nerves in both arms were damaged as a side effect of receiving extracorporeal shock wave therapy with different machines at several hospitals every day to treat wrist pain. I spent 2 months unable to eat or go to the bathroom on my own. Doctors only said that extracorporeal shock wave therapy was safe. They said it was okay to receive it every day. However, a doctor I met a year later said that it should not be done on the median nerve. That it causes nerve damage. I realized at that time that there was a difference in level between doctors and hospitals.
After that, two months later, the pain in my arm miraculously disappeared, and I was able to live on my own, so I lived with gratitude, considering it a miracle.
However, it all started from then. Perhaps because I spent 10 sleepless nights trembling with anxiety due to the shock of the median nerve damage.
I lost 20kg, and I felt my muscles all over my body suddenly stiffening.
I couldn't digest food, my body turned yellow, and I started experiencing abnormal sensations and pain in the soles of my feet, and foot deformities - flat feet began to occur.
My Achilles tendon started to hurt, and my wrists and fingers hurt.
My calf muscle had a minor tear, and my thighs and hips hurt so much that I couldn’t sit in a chair.
All the muscles in my neck stiffened, and my chest, back, and waist muscles began to stiffen as well. All muscles throughout my limbs and including facial muscles stiffened, except for my tongue. And with each stiffening, I felt severe neuralgia.
My jaw muscles also stiffened, and the muscles around my right eye stiffened too.
I couldn’t understand it. People around me said it was fibromyalgia.
However, I do not experience the same symptoms, such as worsening pain at night or being unable to sleep due to pain.
I thought it was an autonomic nervous system issue and continued to receive treatment that is effective for the autonomic nervous system for a year.
I tried various things such as abdominal massage, heat packs, and functional exercise. As a result, my HRV score improved from the lowest to the highest,
I also gained 10kg back, and the functions of my organs felt improved.
However, the stiffening of my body did not stop.
To be precise, it’s not ALS or Parkinson’s, but a feeling of muscles withering from the inside out because blood, oxygen, and nutrients are not delivered to the muscles.
And I feel nerve pain hundreds of times a day, but it’s just a slight tingling sensation, and the pain that really bothers me is not nerve pain.
The most difficult pain is the tearing pain I feel when using the stiff deep muscles and ligaments.
Every time I walk, I feel pain as if my ankles are tearing, and the arches of my feet are collapsing. My Achilles tendon and ankle bones are also painful.
When I use my phone or computer, I feel my wrists and forearm muscles drying out. I often relieve it with self-massage, but the deep inside continues to stiffen.
The ligaments in my fingers and toes are also stiffening. When rubbed, you can hear a cracking sound like bones grinding against tendons.
My inflammation levels are very low, with CRP 0.1 and ESR 2.
The nerve conduction study and electromyography were normal, and I was diagnosed with small fiber neuropathy through sensory threshold testing of my fingers and toes.
Both of my feet are always numb, and my hands and feet are very cold. Also, the anti-yo antibody test showed positive results twice.
I want to receive IVIG even if I have to pay for it myself. The doctor won't approve it.
The neurologist doesn't see patients if their nerve conduction study and electromyography are normal.
Am I really suffering from small fiber neuropathy? I'm lost as to what I should do.