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Posts (11)

Fri, May 29 12:39am · Living with Neuropathy - Welcome to the group in Neuropathy

Update: Finally, finally have a diagnosis. I have Lyme Disease, and an additional parasite. Will not know until I complete my 6 month series of a protocol treatments if that is what has caused my neuropathy. I am hopeful that that is it, but am now in Phase 2 of 3 for Lyme along with goat medicine (that’s right…g-o-a-t antibiotic) for the parasite. Will again post when I know for sure. Am heading off to the Mayo Lyme board to see what I can find out there about these new developments.

Wed, Apr 1 1:59pm · Living with Neuropathy - Welcome to the group in Neuropathy

@qball2019 Thank you soooo much for the information!!! Will get on with some reading on all you posted. Was blessed today with my very first visit (virtually) with my new OD, GP…he’s a concierge doctor rather than the group practices I’ve been seeing for generations. Perfect timing with your posting as he will be treating “all” of me. He’s already strategizing about things that have already been tried with me and will work till we get to the end of what could possibly be wrong then fix if at all possible. I have renewed hope!! Will post if/when I learn anything that could contribute to helping other sufferers here.

Mon, Mar 30 4:46pm · Living with Neuropathy - Welcome to the group in Neuropathy

Thanks all who replied to my qs!

Chris @artscaping — I’ll definitely look into the fascia treatment you cited! During my 6 mo of PT, there was a therapist who worked specifically on my foot fascia which needed kneading;) Was greatly beneficial for my foot movement so I see the value of addressing the fascia. What a wondrous contribution it makes in the body. Had never even heard of it before till last Fall. And yes, I’d love to discuss the cannabis regimen with you. I tried it topically a few times, but even a high dose added no relief from pain. Yet, I haven’t a clue if I was doing it correctly.

Thx for the video clip…sure it will be of benefit to many folks out here.

@summertime4 — When I tried Gabapentin, had very bad bowel movements. However, I was only on it a month as that’s a problem for me even without the np.;)

Sat, Mar 28 12:59pm · Living with Neuropathy - Welcome to the group in Neuropathy

Hello Friends in Neuopathy,
I posted back the Autumn of last year but have finally, finally gotten in to see my Neurologist to get a definitive diagnosis. I have small nerve neuro in my feet. Muscles and bones are ok—grateful for anything ruled out:)

Thank you John, for the refreshed link to your 2017 posting…I could read it with fresh eyes now that I know my problem is actual nerve damage/dying in my feet. No wonder Ibuprophen and PT for muscles did nothing to lessen what I now know to be nerve pain.

Doc has me trying Salonpas with Lanocane with no relief. Next up, I’ll try Lyrica. Will check-out the vitamin regimen suggested here. Already tried Gabapentin last Fall with my GP with only side-effects to show for it. Did not help with the feet.

If there are other things just for pain anyone here can direct me to to try please let me know. Were it not for the pain, I’d be able to walk.

Thx! Diane

P.S. Not taking ANYTHING away from PT for the muscular aspect which is vitally important with or without neuro issues 🙂

Nov 15, 2019 · Neuropathy & Exercise in Neuropathy

Oh my Chris…what I meant by that: I was told by two docs to “stay off my feet” which to me translated as, “don’t walk, don’t play, don’t do anything on my feet; sit or lay down, stay put, i.e., don’t walk.” Plus, I just cannot walk but a few steps till I cannot tolerate the pain anymore. I’m on the early-end of my journey w/ this condition with no “track record” yet.

You’ve worked hard to walk! In the short few days I’ve been on Connect have learned that walking is good.

You are not doing anything wrong—yikes no! Keep-on-keepin’-on with what’s working for you. All the Best!

Nov 13, 2019 · Neuropathy & Exercise in Neuropathy

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!!

Nov 13, 2019 · Neuropathy & Exercise in Neuropathy

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!

Nov 13, 2019 · Neuropathy & Exercise in Neuropathy

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!