NeuroTalk Support Groups - first time I've opened up to anyone

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- - first time I've opened up to anyone (https://www.neurotalk.org/new-member-introductions/175008-time-ive.html)

Welcome to Neuro Talk. You found a good place to be, where there is support and friendship. I am not familiar with your condition, but there will be others who may know more. Explore all the boards and answer anyone you wish to. Make yourself at home, and know that we will support you here. ginnie:hug:

I'm a SFN Girl too

[QUOTE=SFNgirl;979896]Hi Sarah

I have small fiber neuropathy so suffer from nearly constant pain. And with it, I have damage to autonomic nerves. My blood pressure drops suddenly upon standing, or leaning over, etc. I am trying lyrica now after no success with gabapentin for the nerve pain. They didn't really give me any advice on the blood pressure stuff other than to stand up slowly and be careful. The recent warmer weather here in chicago seems to be better for me than the cold, which is a real trigger for my worst burning pain. The bad news is I live in Chicago, not many warm months! But I'll take what I can get. I'm sorry you are suffering, but I can relate, and hope you have some better days ahead.[/QU

I am a SFN girl as well. I have had it for 5 years now and am interested in finding someone to talk with on this site that is dealing with the same things as myself. How long have you had it? What treatments have you tried?

[QUOTE=why?;980474]

Quote:

Originally Posted by SFNgirl (Post 979896)

Hi Sarah

I have small fiber neuropathy so suffer from nearly constant pain. And with it, I have damage to autonomic nerves. My blood pressure drops suddenly upon standing, or leaning over, etc. I am trying lyrica now after no success with gabapentin for the nerve pain. They didn't really give me any advice on the blood pressure stuff other than to stand up slowly and be careful. The recent warmer weather here in chicago seems to be better for me than the cold, which is a real trigger for my worst burning pain. The bad news is I live in Chicago, not many warm months! But I'll take what I can get. I'm sorry you are suffering, but I can relate, and hope you have some better days ahead.[/QU

I am a SFN girl as well. I have had it for 5 years now and am interested in finding someone to talk with on this site that is dealing with the same things as myself. How long have you had it? What treatments have you tried?

Hi, I have had SFN for only 7 months but feels like has changed my whole life. I'm told there is nothing to do but treat the pain and that it's not curable. It's really unbelievable to me that I will have this forever. In my case, they cannot determine the cause so call it idiopathic. Have done tons of testing, my neuro still testing for rare autoimmune type stuff. I did 2 months of steroid infusions (solumedrol) w no luck. Also tried gabapentin up to 2700mg per day. I am now taking tramadol (300mg) and lyrica (300mg). The tramadol seems to be the only thing that makes some difference. Going to try the lotion mrs D has recommended, posted on other threads. Have an appt at johns Hopkins in October, amazing how long it takes to see some of these people. What have you tried? Do you know the cause?