1. < Neuropathy

Small Fiber Neuropathy: How do you stretch!?

Posted by seanywonton @seanywonton, Feb 23, 2023

Hi, sufferer of idopathic SFN for 22 years here. I'm 44 years old now, so half a lifetime! I should do a cake or something. lol.

One of the first and biggest symptoms I have besides outright pain is muscle tension and lack of ability to stretch. I'm really tight, it puts extra stress on my joints, and every year I get a little less limber. I feel like I need to stretch so badly, but if I stretch even very gently, I get horrible, firey pain in my nerves that lasts for days or weeks. It's a cruel irony to be sure.

So, are there any techniques that you guys are using to stretch or stay limber? Do other people have the same issue as me with gentle stretching? I would like to try some things to see if there is some way to not just slowly but constantly lose mobility.

Thanks.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Jun 19, 2023
In reply to @pawprints "I was recently diagnosed with SFN (like, 3 weeks ago) but have had the symptoms that..." + (show)
@pawprints

I was recently diagnosed with SFN (like, 3 weeks ago) but have had the symptoms that led to my SFN testing since I was quit young. It was called all kinds of other things, or blamed on multiple other conditions. So I, like you, have spent longer in this body in pain than I ever did pain free. The BEST solution I have ever found for what you are describing is a real, well preformed, deep tissue massage. Followed by copious amounts of range of motion exercises. I’m talking the kind of thing you learn in PT. Resistance band training is a good way to build long, lean muscle and improve body control and maintain range of motion.

Find a massage therapist you LOVE, who really knows about your body and explain to them what you are dealing with and what you want to do. They are your new best friend. Then start to get hooked up with a physical therapist or top tier athletic trainer and again- tell them where your at and what your realistic goals are. They can teach you so much about how to accommodate your limitations and still get the best of your body.

I was told when I was 17 that I would likely be in a wheelchair by 30. I’m 37, a full time dog trainer specializing in reactivity and aggression (at 5’1” some of these dog weigh what I do), and, while there are struggles, I still use my body just about every damn day. That wheel chair may come for me, but it isn’t today! I owe a great deal of that to amazing physical therapists who taught me SO much about my broken body and how to help it.

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Hello @pawprints, Welcome to Connect. I love the member name you chose and the positive attitude! I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. Massage therapy has helped a lot of members so hopefully others will pop in and share their experience. There is another discussion you might find interesting if not helpful.

--- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Have you heard of or tried MFR therapy?

REPLY
seanmacbeth | @seanmacbeth | Jun 19, 2023
In reply to @pawprints "I was recently diagnosed with SFN (like, 3 weeks ago) but have had the symptoms that..." + (show)
@pawprints

I was recently diagnosed with SFN (like, 3 weeks ago) but have had the symptoms that led to my SFN testing since I was quit young. It was called all kinds of other things, or blamed on multiple other conditions. So I, like you, have spent longer in this body in pain than I ever did pain free. The BEST solution I have ever found for what you are describing is a real, well preformed, deep tissue massage. Followed by copious amounts of range of motion exercises. I’m talking the kind of thing you learn in PT. Resistance band training is a good way to build long, lean muscle and improve body control and maintain range of motion.

Find a massage therapist you LOVE, who really knows about your body and explain to them what you are dealing with and what you want to do. They are your new best friend. Then start to get hooked up with a physical therapist or top tier athletic trainer and again- tell them where your at and what your realistic goals are. They can teach you so much about how to accommodate your limitations and still get the best of your body.

I was told when I was 17 that I would likely be in a wheelchair by 30. I’m 37, a full time dog trainer specializing in reactivity and aggression (at 5’1” some of these dog weigh what I do), and, while there are struggles, I still use my body just about every damn day. That wheel chair may come for me, but it isn’t today! I owe a great deal of that to amazing physical therapists who taught me SO much about my broken body and how to help it.

Jump to this post

I couldn't agree more. This is a manageable disorder. I do acupuncture and massage on regular basis, take R-ALA and Acetyl-L-Carnatine, high-dose vit C, walk and stretch daily and ignore neurologists; they can only prescribe pain meds. Keep moving the body. That's all we can do. Attitude is everything.

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