Neuropathy & Exercise

For me personally any amount of increase in activity will bring about an increase in neuropathic pain and fasciculations. I have tested extended periods of time with various differences in activity (more walking, more stretching, more core stabilisation exercises - I had a spine op). However, to keep severe pain at its lowest, I have to remain mostly homebound. I don't feel like this is the situation for most people, which is good. So I'm a case where exercise only seems to make things worse.

I am also new. Due to having a bar in my back and stenosis, degenerative disc disease and neuropathy I decided I am to young at 66 to let this disease take over. I have been on this merry-go-round for over 6 years and justfound this link. I walk over 4 miles everyday with two walking sticks to keep me from falling. When I do fall I have to wiggle to a tree or post to get up. My legs won't let me on my own. I walk due to it keeping me from having back spasms. I have legs that feel like they weigh 50 lbs. each and have spasms in them continuously. On the bright side my God is my strength and stronghold-not my doctors. I use tons of essential oils from DoTerra and Copaiba has been a game changer. To helps with spasms I use Adaptiv. I ask my pain doctor about CBD oil and he said go for it if you think it will help. I am scheduled for another steroid injection in two weeks. I have another collapsed disc pressing on a sensory nerve; Everyday is a new challege. Somedays the discouragement with doctors is my biggest challenge and others it is my discouragement with myself for not being a stronger fighter. I have found neurologist to be of no help at all.

Hi @betty1954, thank you for the private message. You are definitely too young at 66 to let the disease take over ☺. I'm 76 and not giving up either. I think you just have to take it a day at a time on those really bad days. Have you thought about Myofascial Release Therapy? Here is a link to the discussion - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/. I am still planning on locating a therapist that is proficient in MFR and nearby sometime next year to see if that helps my back problems.

@betty1954

I understand your lack of trust in neurologists. I've seen 4 of them, 3 of which retired. The remaining one I didn't feel a connect with him several years ago, but after seeing a couple of others very briefly, I went back to him. By asking questions and exerting a little pressure, he gradually warmed up a bit. He has done the tests at his disposal, and sent me on to OHSU, the university hospital in Oregon, where I live. After doing a number of tests, all they did was to confirm what my local neurologist had diagnosed. He is good at explaining things to me and telling me my options. My medical team has worked well together, each one helping me from their various perspectives. The ones I see regularly are my PCP, the neurologist, the pain specialist, the opthalmologist, the surgeon who is very knowledgeable about stimulators, the psychiatrist, and most of the time a therapist. As I said, I get a well rounded perspective on the various issues I have. I learn from all of them.

Jim

I have to saymy PCP, pain specialist and opthamologist are all wonderful and work together to keep me up and going. I talk with several people who have just given up and are homebound. I hope I will never let that be me. My PCP says I am a very determined woman to continue to push myself. I have three granddaughters who are young and I plan on seeing the all get married.

Hi John...thx a bunch for the video link!! Really appreciate it.

Since I am new to the neuropathy “camp” (it came on for the first time in June, still seeking a diagnosis), I have a very limited experience with this except that I cannot walk except from the sofa to the sink;)

Meanwhile, my doc has me getting physical therapy. In the middle of a 6wk stint. So far, they are doing massage on feet/legs, are trying to separate my tight foot fascia from the foot muscles which has helped to free-up foot/ankle movement. Also designated home exercises: foot/ankle stretches, rolling my foot in three places on a bottle or ball, hubby does the fascia stretch on me 3x/day, and knee exercises: all for flexibility and strengthening.

What I find really baffling is that I’m told to exercise, but walking cannot be a part of it. Left with exercising in place much like what you describe as your regimen. Guess I’m still getting used to the idea that this is probably not a temporary condition.

Went to Williamsburg a couple of weekends ago. Had to use a seated scooter for the first time after a lifetime of hiking/walking/standing. It was easier than expected, and really spared me from pain and created a new mindset — gave me a whole new perspective on mobility.

So this ‘ole gal (68) is searching for ways get into/stay in shape despite the neuropathy. Hope it helps others too!

@southwind, @johnbishop, I have a question about the statement that walking cannot be a part of the exercise program for folks with neuropathy. I have just worked my butt off to finally be able to walk one mile. It has taken two years of effort and lots of weekly myofascial treatment from my MFR therapist to get to this point. Now that I have that capability I can do walking meditations and catch two birds with one stone. I am careful not to get too aggressive. It just really feels good to walk again. Am I doing something wrong? Will there be the proverbial price to pay? Hope you both have a lovely night of restful sleep. Chris

@southwind, @johnbishop, I have a question about the statement that walking cannot be a part of the exercise program for folks with neuropathy. I have just worked my butt off to finally be able to walk one mile. It has taken two years of effort and lots of weekly myofascial treatment from my MFR therapist to get to this point. Now that I have that capability I can do walking meditations and catch two birds with one stone. I am careful not to get too aggressive. It just really feels good to walk again. Am I doing something wrong? Will there be the proverbial price to pay? Hope you both have a lovely night of restful sleep. Chris

Chris, keep on walking! Your body will let you know if it's too much. I wish I could walk more but I'm satisfied using the elliptical a few times a day. Sleep last night...not so much. Was up all night with the not so dry heaves. I'm taking a sick day off work today and may just see if I can catch up with the sleep I lost last night.

@southwind, @johnbishop, I have a question about the statement that walking cannot be a part of the exercise program for folks with neuropathy. I have just worked my butt off to finally be able to walk one mile. It has taken two years of effort and lots of weekly myofascial treatment from my MFR therapist to get to this point. Now that I have that capability I can do walking meditations and catch two birds with one stone. I am careful not to get too aggressive. It just really feels good to walk again. Am I doing something wrong? Will there be the proverbial price to pay? Hope you both have a lovely night of restful sleep. Chris