Mayo Clinic Connect
How have you received enough physical exercise while dealing with neuropathy?? Do you walk in spite of the condition; tiptoe to get around; particular exercise program, etc.?
Liked by johnhans
Hi @southwind — Thank you for starting this discussion. It's a great topic and one that is hard to even think about if you are dealing with pain from your neuropathy. I find it hard to walk due more to my lower back pain that the small fiber PN that I have. I'm the old guy walking around with an empty (most of the time!) shopping cart at the grocery store to get my exercise. I use the shopping cart to help with my back. I have a hybrid recumbent bike and elliptical exercise at home and I try to make sure I put in 30 minutes a day on the elliptical for weight bearing exercise. Usually it's in two 15 minutes sessions because it's easier for this old guy. The Foundation for Peripheral Neuropathy has some good information on exercise and physcial therapy for peripheral neuropathy here: https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/.
Because I spend a lot of time sitting at my computer I make it a point to stand often and I have a couple of 5 LB hand weights I use to do arm exercises and balance exercises. I'm more worried about muscle atrophy and use it or lose it. What type of exercises help you?
I found a video that may also be helpful for others:
University College London Hospitals NHS Foundation Trust
Liked by johnhans, Lisa Lucier, rwinney
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!
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, johnhans, Chris Trout, Volunteer Mentor ... see all
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You mentioned massage therapy to help with the foot fascia. There is another discussion you might find helpful on Myofascial Release Therapy.
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
I think you might have read an earlier post I made in April 2016 before I had my diagnosis of idiopathic small fiber PN. I made a followup post on what I found that helps me here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
Don't give up on learning everything you can about your condition and searching for something that helps you!
Liked by southwind
Oh my, John, this is a great link…thank you! The therapist told me what he was doing but had never heard of the “fascia” before. This article explained it beautifully…will read-on!
Liked by John, Volunteer Mentor
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.
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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.
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, southwind
Watched the little video clip John. Just knowing how you can when you’re doing enough/too much in a workout as a baseline with neuroapathy was helpful!!
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.
Liked by John, Volunteer Mentor, johnhans
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.
Liked by Jim, Volunteer Mentor, Lisa Lucier
Love your positivity!
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, Lisa Lucier
I understand and concur. I read once that neuropathy requires the right balance of rest and activity based upon each person's uniqueness of thier neuropathy.
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, johnhans
You sound like a boxer to me! Keep up your fight and thank you for the inspiration.
Liked by Lisa Lucier, betty1954
Thank you. I will look it up and see what is available. Usually unless you have lots of money, insurance doesn't pay for anything if you are on medicare and a supplement.
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.
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