Apparatus for Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Jan 4, 2020

Staying on track with my new year mentality, I succumbed to a motorized cart for the firat time today in Target. Instead of being reclusive and housebound, I gave myself an opportunity by using a cart. My thought and question for you all is...considering my slow dragged out progression down hill, I'm left wondering when and how will it stop? Do any of you with SFPN use apparatus for walking due to your neuropathy? Has anyone ended up being wheel chair bound from neuropathy or the reversal, had their legs come back from such damage? Thank you for anything you are willing to share.
Rachel

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

@jimhd

Reading what I wrote an hour ago, I see that it was pretty random. Sometimes my brain doesn't process thoughts very clearly. My wife has an ongoing issue with the number of meds I take and any time I can't come up with a word, I hear and see her displeasure. I know that I'm a little slow with my reflexes sometimes, but there's a reason for each of the medications. I'm tapering down on the morphine sulfate contin. The prescription is 15mg tid, and I rarely take the midday one. Now I'm only taking one in the morning. So, maybe my writing will be less disjointed.

Jim

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I can see your wife's face now. It probably looks like mine when thinking about my own meds. All you can do is try when it comes to reducing meds and let your body tell you if it was the right decision. Tapering or attempting to omit a dose is a good start. The new year and CBD has motivated me to begin weaning off of Duloxetine. Hoping its the right move because its important to me. Good luck with your reductions.

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@artscaping

Well, some milestones are very hard to take. However, it may not be for long. Were you able to find out anything about the changes in your legs? Did you get some help with medication options? Been thinking about you today. May you be at ease. Chris

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Hi Chris
Not yet. My Neuro is quite stoic, less is more kinda guy. Neuro doc was first, followed by Pain Management Monday. That visit will be about them helping my back with an epidural. It's debatable however, depending on blood results. Then in 2 weeks I meet with my PCP to discuss pain meds. Thank you for your thoughts. 😊
Rachel

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@rwinney

Helllloooo Lori Renee
You made me laugh out loud! Thank you for that. I am both humbled and appreciative esoecially today. I had my botox (for migraines) appointment with my Neurologist today and absolutely lost it. Pain has been relentless since the holidays and Im losing ability week by week. So, I went with my main question set and couldn't get any of it out because I could not hold back my tears. Enough said. He drew 15 tubes of blood and I will have answers Friday. My decline is frightening and I'm trying to stay as positive as possible but it's hard to stop your mind from wandering. I'm hoping that I'm wrong with my gut feelings of there being more. Maybe this is the path my small fiber poly neuropathy is taking me on. Time will tell. Anyway, thank you for the sweet compliment, it helped my mood. 😊

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@rwinney Morning, Rachel. I am so glad you enjoyed my compliment. You are darling. What can I say? Hearing about the pain you are in has made me cry this morning. Empathy abounds. You are such a gem of a lady. I cannot stand that you have so much to endure. Good luck with finding answers on Friday. I do not even know what to say. Yesterday I had an almost idiotic revelation that this pain thing is really my life. I have finally come to terms. Even with the Low Dose Naltrexone, it is not perfect at all. So this is my life. I read about your needing a wheel chair, and I struggle so hard too, with the idea of needing one. But I do think it may come eventually. How do we learn to live with grace and dignity? Why is it this way? Can we learn peace? I do not know. Please keep me, and everyone else informed with what is going on with you. There is so much love on this forum.....Lori Renee

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@jimhd

Reading what I wrote an hour ago, I see that it was pretty random. Sometimes my brain doesn't process thoughts very clearly. My wife has an ongoing issue with the number of meds I take and any time I can't come up with a word, I hear and see her displeasure. I know that I'm a little slow with my reflexes sometimes, but there's a reason for each of the medications. I'm tapering down on the morphine sulfate contin. The prescription is 15mg tid, and I rarely take the midday one. Now I'm only taking one in the morning. So, maybe my writing will be less disjointed.

Jim

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@jimhd Jim, You write quite well, and I have learned from you. You are perfect, just the way you are. God Bless, Lori

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Please give the cold laser therapy device a try. I have found relief even after trying it for 10 minute sessions for each pain, carpel tunnel, back, neuropathy, and ankle. This device is even used in chiropractors offices and believe it or not, vets offices for dogs with hip pain. I bought mine on Amazon for $129 and it is cheaper than having to pay co pays per visit. Plus, if you don't like it return it. https://www.amazon.com/gp/product/B07KGG3JS2/ref=ox_sc_act_title_2?smid=A1NIW05O2O2QPD&psc=1

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@lorirenee1

@rwinney Morning, Rachel. I am so glad you enjoyed my compliment. You are darling. What can I say? Hearing about the pain you are in has made me cry this morning. Empathy abounds. You are such a gem of a lady. I cannot stand that you have so much to endure. Good luck with finding answers on Friday. I do not even know what to say. Yesterday I had an almost idiotic revelation that this pain thing is really my life. I have finally come to terms. Even with the Low Dose Naltrexone, it is not perfect at all. So this is my life. I read about your needing a wheel chair, and I struggle so hard too, with the idea of needing one. But I do think it may come eventually. How do we learn to live with grace and dignity? Why is it this way? Can we learn peace? I do not know. Please keep me, and everyone else informed with what is going on with you. There is so much love on this forum.....Lori Renee

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Thank you, beautifully said. I feel your sincerity and warmth. I have refrained from certain emoji's because this is an internet forum however you, my Mayo Connect friend, deserve this from me...
😙 💕😙💕😙💕😙

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@rwinney

Thank you, beautifully said. I feel your sincerity and warmth. I have refrained from certain emoji's because this is an internet forum however you, my Mayo Connect friend, deserve this from me...
😙 💕😙💕😙💕😙

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(those are kissy faces btw)

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@rwinney

Thank you, beautifully said. I feel your sincerity and warmth. I have refrained from certain emoji's because this is an internet forum however you, my Mayo Connect friend, deserve this from me...
😙 💕😙💕😙💕😙

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@rwinney Awwww, Rachel. Thanks so much. If I knew how to do emojis here, I would send them right back to you! MWA!!!! Lori

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@maryv449

Please give the cold laser therapy device a try. I have found relief even after trying it for 10 minute sessions for each pain, carpel tunnel, back, neuropathy, and ankle. This device is even used in chiropractors offices and believe it or not, vets offices for dogs with hip pain. I bought mine on Amazon for $129 and it is cheaper than having to pay co pays per visit. Plus, if you don't like it return it. https://www.amazon.com/gp/product/B07KGG3JS2/ref=ox_sc_act_title_2?smid=A1NIW05O2O2QPD&psc=1

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This sounds interesting. My tens did nothing really except make me VERY well aware that my pain is on the opposite side of the finger and the neurologist explained that it is a nerve ending that my deepest pain lies.

....I apologize if my last message seemed angry. I was actually laughing about it.
Have a great weekend everyone!

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Rachel @ rwinney, I have SFPN (small fiber peripheral neuropathy) idiopathic in origin for 8+ years. The pain in the feet is intolerable at times and made worse by walking. My hands started hurting years after the feet which supports the diagnosis of length dependent peripheral neuropathy (SFPN)( the nerves farthest away are affected first) I avoid shopping. Lately I have used the electric carts when grocery shopping. It became easier to use when I decided not to let my pride get in my way. I have not worn shoes for years as they make the pain worse. I wear orthotic type flip flops all the time except for cold days, then I wear a loose fitting,lined zipped boot. I have become more reclusive. I have read that some folks who have not responded to normal medicines like, (Neurontin, Lyrica, Cymbalta, Nortriptyline) and the Peripheral Neuropathy becomes further debilitating they get relief from fentanyl patches. I was pleased to read that several people are doing well on those fentanyl patches. Has anyone had a spinal cord stimulator inserted for very painful peripheral neuropathy ?
Rachel, unfortunately people do not recognize SFPN as a disability by sight, even if you are using an assist device as an electric chair at Targets. I use
ski poles made for walking on ice or snow,I have hand holds in my bathroom and shower, i use wooden walking sticks to help with balance. I know that if I close my eyes i will lose my balance within 10 seconds, so i keep lights on at night where I will be walking. I clear obstructions out of the way. Where it all goes? I do not know. I did read about getting tested for autonomic neuropathy or at least being aware that you are at risk of developing autonomic neuropathy.
and how it affects elimination,heat rate, blood pressure (orthostatic hypotension). Thanks for asking good questions. Best to you, David

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