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Chronic Sensorimotor Axonal Polyneuropathy and CMTuagnised with Chroni
Neuropathy | Last Active: 1 day ago | Replies (8)Comment receiving replies
Greetings one and all - I can certainly sense a lot of fatigue/pain/frustration with polyneuropathy. My husband was diagnosed with this and labeled "idiopathic" - no known reason.... We've done the neurologist/naturopath/complete workup/pills and creams - but with no improvement at all. Now he's dealing with urinary problems that translate into waking up frequently at night. So, very little sleep with this and the constant burning, shooting, twitching in his legs. He has now been diagnosed with prostate cancer. Has anyone found honest to goodness relief from any kind of treatment? He has been told to keep moving, but it's painful and he also has severe dermatitis in his legs. All of this developed during the past 4/5 years. Could the Covid vaccines have played a trick on the immune system? Anyway, best wishes to all for relief in some shape or form.
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@mlor ~
I am so sorry for everything you and your husband are going through. What I have in common with you, more or less, is distal symmetric axonal demyelinating sensory-motor peripheral neuropathy and restless leg syndrome. The PN started about 25 years ago; the RLS about 4 years ago. Over the years I have found some honest-to-goodness relief - and of course sometimes these "treatments" come and go or get layered on on top of each other -- whatever works at the time is what I do until it doesn't, or gets replaced with something that works better.
for RLS: Ropinerole (Rx) - no burning in my legs but plenty of twitching & pain
for fatigue: listen to your body & don't take chances with "iffy" activities (< injuries)
for pain in feet: for many years (pre diagnosis): Watkins Pain Relieving Liniment Spray
for nerve pain in all extremities for several years: Pregabalin or Lyrica (Rx)
for regular pain: Tramadol (Rx) or any OTC like aspirin, Tylenol, etc. that works
for mobility & muscle strength: indoor recumbent bike & vibration platform
for all of it to give your body its best chance to respond to all treatments: BEMER
I won't even try to explain BEMER except to say I have been using it daily for about 2 years and find it irreplaceable in improvement in overall health. If interested, you can find information on their website. Not cheap - I invested $6000. in my own unit & consider it money well spent.
You will both be in my prayers. The frustrations are many but the connections, ideas, and friendships available on Mayo Clinic Connect are real, and offer hope at any hour and any day or night. Blessings to you. ~ Barb