still working with small fiber neuropathy

Hi. I experience exhaustion and severe aching that might align with flu like feelings. I'm disabled. I give you alot of credit for continuing to power through and work. You will know when your body just can't anymore. I hope it never comes to that for you. Keep pushing as long as you can. Best of luck.
Rachel

Did either of you try IGIV? I am hoping it will help with the weakness and flu symptoms. My husband is not supportive, so I'm terrified at the thought of disability. Also, Rachel, if you don't mind my asking, how long did you work after your diagnosis? I'm sorry this is happening to you. Lori, the flu-like symptoms are hardest for me in the morning too. Do you still work? Have you tried tramadol for the flu-like aches? It's all that helps me. Thanks to both of you.

Just hanging in there myself. My experience is lower leg weakness associated with SFN. Not so much a flu like feeling but the weakness is debilitating and knocks my motivation and sense of overall strength down significantly. My doctor prescribed Gabapentin suggesting this will fire the nerves and return my leg strength but after a week still the same. I have felt like this for 2 months with no change. Long term diabetes caused this. Good control since this happened but no improvement. Any other experiences or advise from others would be greatly appreciated.

@ecc79

I've tried all of the meds for neuropathy, but every one caused unacceptable side effects or had no effect on my sfpn at all. Lyrica was starting to help me but before I got up to full dose the side effects put me in the hospital for a few days. I was incoherent, could hardly walk, couldn't put together a complete sentence and had no memory.

I suppose you plan to continue to take the Gabapentin for at least 6 weeks. That's how long it takes to be able to assess whether or not a medication will work for you. Several of my siblings have found that Gabapentin worked for them. Patience and persistence are two qualities to exercise during the sometimes frustrating process. I spent 2 or 3 years searching for the antidepressant that improved my depression, and much longer than that to come up with a combination of meds to treat my pn. And I'm afraid that what's working now may not work a year from now. It's a process of trial and error that could take a couple of months or 5 years. We just keep experimenting until the Voila! moment comes.

Jim

Did either of you try IGIV? I am hoping it will help with the weakness and flu symptoms. My husband is not supportive, so I'm terrified at the thought of disability. Also, Rachel, if you don't mind my asking, how long did you work after your diagnosis? I'm sorry this is happening to you. Lori, the flu-like symptoms are hardest for me in the morning too. Do you still work? Have you tried tramadol for the flu-like aches? It's all that helps me. Thanks to both of you.

Also, all of my thick, blonde hair fell out. I'm the only person I know of whose lost her hair because of neuropathy. It's terrible, but I would be happy bald if I could eliminate the exhaustion, headaches, and weakness.

@ecc79

I've tried all of the meds for neuropathy, but every one caused unacceptable side effects or had no effect on my sfpn at all. Lyrica was starting to help me but before I got up to full dose the side effects put me in the hospital for a few days. I was incoherent, could hardly walk, couldn't put together a complete sentence and had no memory.

I suppose you plan to continue to take the Gabapentin for at least 6 weeks. That's how long it takes to be able to assess whether or not a medication will work for you. Several of my siblings have found that Gabapentin worked for them. Patience and persistence are two qualities to exercise during the sometimes frustrating process. I spent 2 or 3 years searching for the antidepressant that improved my depression, and much longer than that to come up with a combination of meds to treat my pn. And I'm afraid that what's working now may not work a year from now. It's a process of trial and error that could take a couple of months or 5 years. We just keep experimenting until the Voila! moment comes.

Jim