Nancy Frohman From The Foundation For Peripheral Neuropathy On Addressing P-N Sufferers:

When we get calls, we try to do a bit of the following:

 -          We listen. Sometimes, just having someone to listen to their issues and commiserate helps them. 

-          We advise them to see a neurologist and recommend one if we can. Sometimes they have given up or have a neurologist who doesn’t work with them on their symptoms.  We recommend to see another.

-          We recommend that they log their symptoms so they can talk with their healthcare providers about what the symptoms are, and when they get worse if they do.  Sometimes this can lead to clues on new treatments.

-          There may be other healthcare providers that can provide assistance. Pain management specialists, physical therapists, counselers etc.

-          Exercising is hard- but it is important to do something- short walks, water exercises, chair yoga.  Anything to keep the circulation going and the mind/body connection engaged.  Even a little helps. This is still the best way to slow progression.

-          We invite them to review our (FPN) website for treatment options: there are different options that can help as you know.   We also suggest that they don’t just rely on one treatment – that sometimes a combination of things helps. And gently suggest what is considered reasonable expectations for improvement. Expectations of complete recovery may make them feel worse when that doesn’t happen.

-          We suggest they address any underlying conditions that may be making the neuropathy worse.

-          Journaling, writing, has helped many people mentally if not physically.

-          Diet of course.

-          We offer that they explore alternative treatments or exercise if they haven’t thought of it before.

-          We of course suggest they check everything with their healthcare providers

-          And then we refer them to you (Support Group Leaders) and everyone on this mail list- so they can see they are not alone in this, and get the good tips and support you all offer.

Nancy Froman, https://www.foundationforpn.org/