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Mrs. H (@amberheilman)

Too much life to live

Neuropathy | Last Active: May 11, 2019 | Replies (12)

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@johnbishop

Hello @amberheilman, I would like to welcome you to Connect along with @jenniferhunter and other members. I'm sorry for your loss of your father. I know not having someone to talk to about your neuropathy can make you feel all alone. It is pretty awesome to have a husband who is supportive. I think one of the best things that we patients with neuropathy can do is learn as much as we can about our health conditions. I lived with neuropathy for 20+ years before seeking a diagnosis and something to help with the numbness. I have idiopathic small fiber peripheral neuropathy but only have numbness and no pain associated with it so I had to look for alternative treatments as there are no drugs that help with numbness. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@jenniferhunter has given some really good information on Myofascial Release Therapy and it is great discussion to read through. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following where you can meet other members with similar symptoms and learn what they have found helpful for treatments.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

@amberheilman, are you able to share a little more about your neuropathy diagnosis and any treatments you have tried?

John

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Replies to "Hello @amberheilman, I would like to welcome you to Connect along with @jenniferhunter and other members...."

Thanks John. I have read your story and that is one reason why I have joined. Myofascial therapy is great! Before becoming a teacher, I was a certified massage therapist and worked at a pt facility for 7 years. I would definitely encourage myofascial release.
Please add me to any group you feel would I would benefit & help others at the same time.
As far as diagnosis & treatments, I was first diagnosed to have nerve damage from surgery. Then painful bladder syndrome. Finally, SFN last week. I have tried gabapentin, which I did not react well to. Lyrica helped the most so far, but i can not function mentally. It is super expensive for a teacher's wages and the long term side effects are scary. I have been trying medical marijuana at night which helps just as much as lyrica with less side effects however, not liking the idea of smoking. I would much rather have natural medicine. Call me a hippie, but i am sceptical of pharmaceutical drugs. My neurologist said he is not going to do any biopsies to make it officially SFN. He said there is no reason to make scars when it is obvious. My concern is the speed of my symptoms. In 5 months the numbness and burning is all over my body. Today…my tongue is numb. My fear is that I am misdiagnosed again or in another year I will be a lump🤣 in a chair.
Sorry, that was icky. They do have some really cool designs for adult diapers