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Mar 26, 2015 1:54 AM

Trying to get more ideas and share information that I have learned from having this disease. Anyone have anything to share to help with the pain I would love to hear and share what I can about it.

Mar 26, 2015 11:47 AM

JoeEpori42 What type of symptoms are you having, and what is your diagnosis. I have Syringomyelia, Fibromyagia, and Osteoarthritis, as well some other things going on. I use rub ointments, and a rice pack made with 2 wash cloths sew 3 sides and pour plain white rice in it then sew up that side put into microwave for 3 min and place on whatever is hurting. It helps with the pain, I place my heat pack against my lower back then get under cover keeps warm approx 3 hrs.

Mar 26, 2015 12:34 PM

Joe I am having a Fibro fog, sorry about asking for your diagnosis when it's the title. I have recently started have neuropathy in my feet and something going on with my shoulders I stubbed upon his and it seems to help a little I have a hand and wrist brace, and elbow pads. Last night my arms from my elbows down to my fingers were hurting soo bad pain was a 10 I put the brace on my left hand and got it as tight as I could, then put the elbow pads on each arm got them as tight as I could. In about 30 min., I began to notice that the pain was gradually getting better. Now it didn't go away completely but it brought them down to a 6-7 which was bearable. Good luck,will keep you in my thoughts and prayers.

Mar 26, 2015 6:41 PM

JoeLepori42, like Weezie, I'm not too familiar with polyneuropathy. I have neuropathic symptoms in my hands and feet, and sometimes p, likely due to disc damage all along my spine. I was just put on Tizandine, and I take Tramadol and gabapentin. I also use Tylenol arthritis, Voltaren gel, a TENS unit, and rice packs. It doesn't really help as much as I like.

Mar 26, 2015 7:35 PM

I've heard, but haven't tried, that compression can help for some people.

Nov 17, 2015 11:22 AM

I have been going to the local wellness center for warm water exercises. Then I get in the hot tub for about 10 minutes. The. Warm water really seems to help. I also got a recumbent bike to ride. I went from riding 1 mile, now im up to around 5 miles. The bike seems to help also. The problem is that after my rides my legs feel like rubber. I have found that water exercise has helped the most. I also go to a meditation class EFT (emotional freedom technique). This is helping out also. It can be found on YouTube. I hope this information helps someone.

Nov 17, 2015 2:22 PM

Wow, that's awesome Joe! With the rubber legs, you may be over exercising on the bike. Cut back to 4-4.5 miles and see if it helps. When I overdo PT I get the rubber legs & shakes. I'm jealous because I've been doing the treadmill for 2 months and I'm only up to 20 minutes. 🙌 But I'm so happy for you!!! 🙏🌼

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