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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 2 days ago | Replies (6021)Comment receiving replies
Hi @carlyschneider, I can understand the still processing the diagnosis. It is a lot to take in and it's easy to get buried by anxiety. It's good that you are researching and advocating for yourself. Have you considered any alternative treatments or therapy to see if they might offer some relief from your symptoms?
Have you heard of Myofascial Release Therapy (MFR)? There is a discussion started by @jenniferhunter where you can learn more about it - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/. @artscaping has found considerable relief from her MFR sessions and may be able to share more information with you.
The Foundation for Peripheral Neuropathy also has some complementary and integrative therapies for neuropathy on their website -- https://www.foundationforpn.org/living-well/integrative-therapies/
Replies to "Hi @carlyschneider, I can understand the still processing the diagnosis. It is a lot to take..."
Good afternoon @carlyschneider. I'm @artscaping or just Chris. John Bishop has asked me to introduce my experience with MFR, Myofascial Release therapy. If you have seen the video in this section then you have a pretty good idea of how fascia connects everything in our bodies. When it becomes restricted or tight, it hurts. A therapist has to have very sensitive hands to be able to find the restrictions. If you have accepted your diagnosis then you understand that there is no cure for SFN.,,,,,,and that it progresses in different ways and on different time schedules for different individuals.
Five years ago, I started with MFR sessions every other week and that was enough to mitigate the symptoms of SFN so that quality of life was maintained. Now, I have two MFR sessions a week plus at-home treatments I can manage by myself or with props. I actually moved here lock, stock, and barrel in part because the MFR therapist is excellent. The other reason was that I could not handle the wildfires on my mountain.
Two realities: 1. sometimes when an area in the body needs a great deal of work, you may not feel results for 24 hours. 2. sometimes when a restriction is super tight, it does not release without some discomfort/pain. You just have to let your MFR therapist know your tolerance level and when the source of the pain has been reached. It is such a relief.
May you be free of suffering and the causes of suffering.
Chris
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Thank you @johnbishop for this information! I have not heard of this treatment. I am concerned about the side effects of IVIG and I am just beginning to look into some treatments to manage this. I just saw this morning that there is a group here specifically for TS-HDS SFN!! Is this what you were dx with? I have so many questions for the group!