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Fri, Nov 8 4:47pm · Anyone here dealing with peripheral neuropathy? in Neuropathy

Hi Susan, What state/city are you in where you found a MFR therapist who gave you such successful treatment? Thanks, Margot

Fri, Nov 8 9:10am · Anyone here dealing with peripheral neuropathy? in Neuropathy

Hi @upnort . Will you please let me know if you find a MFR therapist at Mayo when you go in a few weeks? I’m scheduled to see PT there in January and would ideally like someone trained in MFR. many thx and good luck. Margot

Sat, Nov 2 10:37am · Anyone here dealing with peripheral neuropathy? in Neuropathy

I haven’t posted in awhile deciding to wait until I’d progressed further with my visits at Mayo which started two weeks ago. For those of you who knew I was going, just know I’ll post more when I know more.

But I wanted to weigh in briefly on some of the recent posts about scams and the Protocol group.

It seems that John and other MayoConnect mentors wouldn’t be recommending treatments such as The Protocol or Myofacial etc if there wasn't evidence behind the treatments, albeit somewhat anecdotal.
After all their names are associated with Mayo Clinic, which has its ethical and medical reputation behind this blog site.

We all have to make our own choices about what to try and not, and yes it’s exhausting and can be very disappointing. But the value of a blog like this is to share information and learn options (conventional and unconventional) that our “regular” docs might not know or support yet.

Let’s keep trying and sharing and give our docs the good feedback so they can get on board. Maybe eventually they’ll be able to push the insurance companies in the right direction too. 😉

Sat, Oct 5 2:27pm · Anyone here dealing with peripheral neuropathy? in Neuropathy

Just did my legs up the wall on our bed on vacation in Kauai. I know friends, poor me. 😎 It rejuvenated me a lot after an active day.
Chris and John if it’s tough getting your legs straight up the wall you can modify this pose in different ways…. 1st, try stacking firm pillows next to the wall and lying down so the pillows are between your butt and the wall and your legs are propped on the pillows at an angle,with you feet maybe touching the wall. You’ll probably be at about a 90 degree angle.
The 2nd option is to lie on the floor with your legs on a chair at about a 90 degree angle.
The benefit of this pose is having your legs higher than your heart so just play around with whatever works for you. Just make sure your back in supported well.
I hope this helps as it it really is a remarkably restful pose. Think… falling asleep. 😴 Aloha. Margot

Tue, Sep 3 11:22am · Living with Neuropathy - Welcome to the group in Neuropathy

Wow JK… that's terrible. I'm horrified that former doctors didn't warm you about the risks of taking too much Ibuprofen. How long after you stopped taking it (for the Bursitis?) did you develop Cirrhosis? May I asked what your symptoms when you were that lead them to diagnose the Cirrhosis?

Mon, Sep 2 10:10pm · Living with Neuropathy - Welcome to the group in Neuropathy

The CBD oil under my tongue helped for sleep but then I developed canker sores until I stopped using it regularly. Neither the CBD oil nor the CBD/THC ointments have helped my pain. I just started using the Fibro cream, which seems to provide a little pain relief for a shot time… on a good day. I also use Gabapentin at night.

My most consistent pain relief is 600mg of Advil ( not generic Ibuprofen) 3x/day. However the risks of liver problems with that make me do that only occasionally.

Wed, Aug 14 3:30pm · Anyone here dealing with peripheral neuropathy? in Neuropathy

Thanks for your response and you are correct, those symptoms I described are related to long term back issues; stenosis, spondylolisthesis and scoliosis, for which I had back surgery in 2010. I'm determined not to have another back surgery if at all possible. I also have a neuromuscular disease called CMT (Charco, Marie, Tooth) and some PN, both of which have resulted in muscle atrophy in my legs and balance problems which is why I wear leg braces. I was wondering if the PEA and Fibro Cream might help some of my overall pain. I guess I'll just wait until I've been to Mayo at the end of October and see what they say about my complex condition.

Wed, Aug 14 10:15am · Anyone here dealing with peripheral neuropathy? in Neuropathy

Thanks. Can you tell me what your pain symptoms are? I have generalized aching across my lower back, with more pronounced aching and occasional shooting pains down my legs and into my feet, especially my left side. I haven't tried PEA yet.