← Return to Recently diagnosed with Small Fiber Neuropathy - so many questions

Discussion

Recently diagnosed with Small Fiber Neuropathy - so many questions

Neuropathy | Last Active: Mar 8, 2022 | Replies (78)
Comment receiving replies
@janineca

Hello, I'm sorry to hear you have this diagnosis. I'm a 50-something year old female, and was diagnosed with SFN (Small Fiber Neuropathy) almost 5 years ago. I take Lyrica, and it helps but try to only take what you need to function, as there is a lot of discussion about the negative effects of it. For me, it was some more brain fog and weight gain. I can answer some of your questions from my personal experience. I'm not a medical professional (yet. I'm in school right now for Occupational Therapist Assistant) but you can get a lot of information about SFN from the nih (.gov) website.
I clicked on your post because I'm trying to get some support for my increasing pain levels. I'm being woken up in the middle of the night with such a scare of what I'm feeling in both of my entire legs (bilateral). I need help with a strategy that others have tried (not another pill) to help with this new issue. I've also been diagnosed with Fibromyalsia, so I'm no stranger to pain.
Please reach out to me when you have a question or just need support. I'll do the best I can to support you.
-Janine

Jump to this post

Replies to "Hello, I'm sorry to hear you have this diagnosis. I'm a 50-something year old female, and..."
John, Volunteer Mentor | @johnbishop | Feb 28, 2022

Hello @janineca, Welcome to Connect. I'm happy to see that you have already connected with @trishh. Connect is a great place to meet other members with similar symptoms and learn what they have tried and what helps them. NIH is a good site to learn about small fiber neuropathy. My two favorite sites are:

-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/

You might want to read through the following discussion to learn what other members have shared --- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

@artscaping and others have found Myofascial Release Therapy (MFR) helpful for relieving neuropathy pain. There is a discussion on MFR -- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of or tried MFR?

VIEW AND REPLY
Maveric09 | @maveric09 | Feb 28, 2022

Thank you Janine. I appreciate your journey and empathize with you. I'm starting to experience leg pain as well. I'm on Lyrica albeit a low dose (25 mg 2x p/day). I'm taking Alpha Lipoic Acid and CBD to see if that helps. I also find relief with a percussion massager. It may be more a distraction but I'll take it. The chest pain, disgistive issues, and facial flushing has been the most common symptoms for me. The leg pain is new and I hope does not get worse.

VIEW AND REPLY