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Posts (17)

5 days ago · still working with small fiber neuropathy in Neuropathy

Thanks, David. God is speaking through you today! I don't fear death itself. Like you I really believe that I will go to a wondrous place. I have two big worries: taking care of myself while I'm here and not being around to see my sweet grandbabies grow up. You are right about all of it, and I will try to follow your advice. May I ask how long you have had your diagnosis?

6 days ago · still working with small fiber neuropathy in Neuropathy

Hi,Rachel. Yes, I did biotin and a host of other hair supplements. It just keeps falling. The hair loss alone makes me think about suicide, but then I realize that it is just hair, and I'm a coward I guess. I don't want to leave that way. The extreme exhaustion and pain makes me think about suicide, but then I think of my two grandchildren, and I want more time. I don't know how I can keep working,but right now I have no choice. I'm waiting for results of skin biopsy. I too have migraines. I was going to try Botox, but my insurance was going to have me pay 500 for the medicine, so that was out. Nobody has said how SFN affects life expectancy. I trust in God, but I have felt abandoned. I know He did not do this to me, but I feel lost. Hey Jim, if you're out there, you've mentioned your depression a lot. Let me know how you are feeling.

Tue, Jan 14 12:39pm · still working with small fiber neuropathy in Neuropathy

I'm guessing the hair loss is neuropathy because my scalp tingles, and it feels like bugs crawling around. Awful. The hair loss was one of the first problems I had, and the dermatologist was the first medical expert to suggest neuropathy. I thought I couldn't live without my hair. So hard. I really had beautiful hair. It defined me. Guess God taught me a lesson there. My preacher said to be,"You'd' be surprised what you can do." You are so sweet, Lori. I sure hope this new med gives you some relief from that pain. I'm so happy to hear the breast cancer surgery was a success. Thanks, Chris, I'm learning to be happy any day when I'm not in physical misery. Today is good. Iceblue,I agree that is weird about the tramadol. I sure hope you find what works. To all of you, I tried medical marijuana too, but it caused extreme anxiety. Admittedly, I didn't try all of the options. Maybe that would work for some of you.

Tue, Jan 14 6:19am · still working with small fiber neuropathy in Neuropathy

Jim, do you mind telling me what you are taking for depression? I'm beyond depressed, but all meds exacerbate the constipation that comes with my neuropathy.

Mon, Jan 13 11:32am · still working with small fiber neuropathy in Neuropathy

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.

Mon, Jan 13 11:29am · still working with small fiber neuropathy in Neuropathy

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.

Mon, Jan 13 8:08am · still working with small fiber neuropathy in Neuropathy

Just wondering if any of you out there with SFN are still able to work. The fatigue and flu-like feeling I have are crippling,but I'm trying to keep my job. Do any of you experience the flu-like feeling? Is there anything that can help?

Fri, Jan 10 11:38am · Nail ridges in Neuropathy

They tear somewhat, but mostly grow square and have deep ridges.