NeuroTalk Support Groups - I'm new to this forum but know some here from years past

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- - I'm new to this forum but know some here from years past (https://www.neurotalk.org/peripheral-neuropathy/90361-im-forum-past.html)

Quote:

Originally Posted by Marty SLC (Post 527045)

Yes I agree it's a long shot to think I can get all I have lost. If I could get half what I have lost I would be happy. I have learned to deal with pain pretty well so when I get moments when it's less I say wow it would be great to here.

I'm a programmer and do not use any chemicals at home. If I do I wear rubber gloves.

Honestly it's still progressing but not as fast as in the beginning. I've just made a commitment to give it my best for one year of eating right, taking the right vitamins and exercising. I have discovered like many that if I'm able to get my heart rate up high enough (like hiking) the pain is much less. I has to do with blood flow I just don't know what. More oxygen or more drugs flowing though me or something like that.

Thanks for the help mrsD!

Marty

this makes me curious, usually the decrease in pain with exercise is d/t endorphins....endogenous morphine like substances....which ordinarily have a poor track record with neuropathic pain.....have you had you spine checked? do you really have neuropathy or is it perhaps radiculopathy? being a -programmer - how is you posture?....perhaps some general conditioning would be a good thing....perhaps a physiatrist? good luck

Quote:

Originally Posted by daniella (Post 527252)

Hi. I am sorry for your continued health conditions. I hope you get relief soon. For me I have PN in my inner ankle/foot/calf of both legs and RSD but for me I take and it changes slightly but anyhow on a regular basis
Magnesium glycinate 400mg sometimes the oxide too
Multi
Calcium with d 2 times daily
Glucosamine chondrotin
Fish oil and flax seed supp 2 of each
Vitamin c
Meds not the as needed ones
Neurontin
Cymbalta
Serequel
Klonopin
As for gluten free if you have a Trader Joes or Whole foods they have a lot of breads and even things like waffles that are GF. Feel better

How did you get RSD? My pain was much worse in the areas you have them in but that has improved since my TTS releases but I did get RSD from one of the surgeries. The RSD is almost gone now. How long have you had it? Are you on Serequel and Klonopin for your PN or something else? Those are some serious drugs!

Thanks for the list of vitamins!

-Marty

Quote:

Originally Posted by pabb (Post 527260)

Yes I had my spine completely checked out, 3 MRI's. Plus it's in my hands and face. All the doctors say my blood flow is good but I've never been to a specialist. I'm just so tiered of all the tests and expenses.

Thanks for the input!

-Marty

We are not sure how I got RSD or PN. The thought was overuse because I was a heavy excerciser but had no fall,surgery,or break. Some other thoughts could be my long history with anorexia but there is no yes this is what caused it.The other ? is why I have PN because at the time I was 28. I have had so much diagnostic testing that there really is no more so it is more about managment. Serequal was rx with my psych for anxiety and sleep. Klonopin by my neuro for my tight muscles. My current pain doc also rx zanaflex but I have not tried it yet as I am increasing neurontin. Wait is TTS tarsal tunnel? I ask cause way back and for me it was a NO but I was suggested that. Anyhow I hope you feel better

Quote:

Originally Posted by daniella (Post 527344)

Your symptoms remind me of TTS "Tarsal Tunnel Syndrome" The burning pain on the inside of your feet, ankels and legs is a typical sign of this. It's like "Carpel Tunnel Syndrome", you know the ppl wearing the wrist braces or have a scare acrossed the wrists indicating they've had the surger to release that tight tendon that goes acrossed the wrist and nerve. The same is true for the tendon that goes across your ankel bone. The big nurve goes under it and gets compressed. The inside of my arches, ankles and legs use to burn like crazy! Now it's much better but it's been a long 7 years. That's how long it took for the RSD to burn out after the surgery. Now it seems it might of been worse it.

Have youve been tested for TTS?

I to a degreee was tested in the start but would never go under surgery as it is not for my condition. Even if I did have TTS the surgery would not be good for me in my case. it still would be about meds and other type of treatments. I have got too many opinions that stated no and won't even let a doc touch my leg anymore. Actually the air boot they had me in for so many months in the start of this probably contributed to my worsening as with RSD and I think even PN not using the limb causes more problems. If you want you can PM me anytime. I hope you feel better