Small Fiber Neuropathy: What helps?

Posted by lisadog33 @lisadog33, Mar 28, 2017

I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.

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veronica2000 | @veronica2000 | May 17 10:20am

In reply to @lovelandmimi "I have neuropathy which affects my legs and feet. Dr. Hasn’t been able to identify the..." + (show)

I'm so happy it has helped you, it gives me hope. First time I'm hearing about it, I have seen at least 7 neurologists (I have moved many times because of hubby's work) and no one had mentioned it. I will bring it up on my upcoming appointment. Like you, nights are the worst but lately days are unbearable too. It now feels that my entire body is on fire 24/7. I'm constantly swollen, probably because I don't sweat. Many blessings 🙌

veronica2000 | @veronica2000 | May 17 11:11am

I lived with most of those symptoms for years and was told over and over that it was either on my head and that it was fibromyalgia. I was referred to new Dr and he finally ordered skin biopsy and diagnosed me. The symptoms can be related to SFN but also other things. I also have Hashimoto's and because Dr's insited in was in my head, I'm not sure what came first. I too lost a lot of weight 40lbs in 6 months, without trying. My recommendation, if your Dr is not listening, seek 2nd opinion. Good luck and I hope you find answers.

John, Volunteer Mentor | @johnbishop | May 17 11:35am

In reply to @veronica2000 "Thank you John, I'm going to check the links. What do you feel they helped the..." + (show)

I've been on the protocol since Sept 2016 have some feeling returned to my feet but I still have numbness and some tingling. I do think it's stopped the progression but it's only my opinion and since I didn't have a nerve skin punch biopsy when I was diagnosed there is no evidence that the progression is stopped. For others on the protocol it's actually allowed them to get pain relief without the seizure medications normally used to treat neuropathy pain.