August 2020 Meeting Notes

The Peripheral Neuropathy Support Group of Metro DC held an August monthly meeting via Zoom August 8.  It was a more casual meeting aimed at people discussing their unique issues, and their successes, with various treatments. 

  • 20 people participated for a general PN discussion with no guest speaker.
  • New member Dave Matz moderated.
  • One member urged participants to focus on the positive things they could do every day more than on the pain they felt so they could end each day feeling the self-satisfaction of having accomplished something important by helping someone less fortunate than we are. Michael Wright’s PN Success Stories website  is viewed very highly in this regard.
  • Excellent group discussions with many suggestions offered re: treatments, medications, sources of information, etc.
  • Several people noted the benefits of water exercise as good “non-weight bearing exercise” for those with PN. Steve said he’s been swimming every day in his apartment building’s indoor pool since it reopened in July and his feet and legs feel less numb and stronger. Others talked about water aerobics. Some felt they had improved balance. Others indicated they could do a wider range of exercises and stretches because of the buoyancy they felt in the water.
  • Supplements
    • We discussed the use of “supplements.” Steve held up a bottle of “Super B-Complex” vitamins “Nature Made” brand he got at CVS at the suggestion of his new neurologist, Dr. Perry Richardson, prof. of neurology at GW who spoke with us in Sept. 2019. 
    • Mike Foxworth noted the quality of supplements varies widely. He cited a service to which we can subscribe that investigates and issues reports on the quality of various supplements, e.g., B-complex vitamins, Vit. B-6, B-12, D, Magnesium,  R- Alpha Lipoic Acid, Lipitor, Atorvistatin, etc.
    • The consensus of the group was that we should look into subscribing to this service after we obtain individual reports on the above supplements. Steve will follow up with Mike on this service.
    • Diane Mowitz noted that a good brand her doctor recommended to her is called “Pure Encapsulation” available on Amazon. https://www.amazon.com/Pure-Encapsulations-Hypoallergenic-Utilization-Physiological/dp/B0017CRZIK/ref=sr_1_15?dchild=1&keywords=%22PURE+eNCAPSULATION%22+DRUGS&qid=1596948497&sr=8-15
    • Brenda Cheadle mentioned the Foundation for Peripheral Neuropathy has a helpful publication on its web site entitled “Supplements for the Nervous System.”
    •  Someone mentioned a new product that may help reduce PN pain for at least 3 months, a “Qutenza” patch (with Capsaicin creme?) recently approved by the FDA. See https://www.qutenza.com/?gclid=CjwKCAjwmrn5BRB2EiwAZgL9opYX27up3dcy-H2PKByYXhuIHJQp6WFjBWyRAHz00xeWJ8VhLhUkqBoCJdYQAvD_BwE
    • Several members have had good success with Super B Complex.  Others did not agree.
    • There were discussions about the fact that there is no government agency regulating supplements.
    • You never really know what you are getting.
    • There is no FDA regulation of supplements.
  • Brenda  warned to be careful taking certain medications like the powerful antibiotic Cipro. She said her husband took it and he had some negative side effects with it.  Care should be taken with any new medication to look for side-effects and discuss any you find with your Doctor.
  • Steve suggested you can google “medically induced neuropathies” to see a list of medications that have been found to induce PN!
  • Amitriptyline, an antidepressant, also got good reviews for PN
  • Bruce Malkin strongly believes in using gabapentin within normal (more than 300 but less than 3000 mg daily in spaced 300 mg pills) boundaries as a useful neuropathic pain medication as well as an anti-spasmodic that helps reduce restless leg syndrome.  Dave Matz’ neurologist disagrees and believes that if Lyrica (pregabalin) works for you, switching to Gabapentin makes little sense.
  • One person uses 1500 mg Gabapentin/day plus 50 mg  of Tramadol every 4 hours 
    1. Gabapentin got some good reviews because of its little or no side effects.
    2. Once again not everyone agreed on the side effect issue.
  • Although some people were very concerned about using Lyrica.,  Tthere are some members who have been using Lyrica for 10 or more years at as high as 1500 mg/day.  One member is finding significant, but not total, relief at 400-500 mg/day.  There seem to be a balancing act  of side effects like somnolescence, and drugs for wakefulness, like Provigil, an anti-narcoleptic medication.

  • Doctors 
    • Terry Orlando is compiling a list of group-recommended neurologists and other doctors we hope to circulate for group input this fall.
  • Upcoming Speakers?
    • Steve noted possible upcoming speakers this fall. They include  Pat Gualtieri’s podiatrist,  personal trainer  Joel Minton who led two classes for us in the fall of 2019 and may lead a new class on “mindfulness”, and a representative of the  Center for Peripheral Neuropathy at the University of Chicago Medical Center.
    • Mike also mentioned he has some videos we could also see this fall.
  • It was recommended  that everyone look at the Foundation for Peripheral Neuropathy website, and join the Foundation to get much more information. It is the only national organization that represents us.
  • Bruce Malkin has been in contact with the FPN to try to get its lobbyist, Mark Veith, to work with the activists and lobbyists promoting improvement to the law Americans with Disabilities Act, because we have much in common, but we lack a strong influence in Congress, which the ADA people already have established.
  • Other Treatments for PN
    • It was suggested that a cold water soak might be helpful for some to sooth the burning sensation.    One member keeps a bathtub filled with water. He stands in it for 1 -15 minutes and the burning is significantly reduced. There is a danger of standing in the tub in the middle of the night.  If you fall asleep, you might very well take a fall.  You could also put a shower chair in the tub with arms and back.  You can fall asleep with little risk of falling.
    • Mindfullness was raised as an approach to controlling pain. Judy Gulbis mentioned a good meditation app called “Calm” which advertises on cable TV. She said it was better than another app someone mentioned at “headspace.com
  • DCPN has a Facebook page called “On Your Feet”.  Everyone should sign in and follow “On Your Feet.”
  • Subsequent to the meeting, Bruce became aware of a website called  Curable.com, which could be of interest to us.  Has anybody used their services already and what results did they get from it?

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