Numbness comes and goes

Posted by paul14 @paul14, Jun 16, 2023

Does anyone have numbness along the calf and ankle on one leg one day and the other another day? I find when I elevate the leg, do exercises like ankle pumps numbness tends to subside. I also have red feet when standing or sitting which also goes away when elevating the legs. Is this the neuropathy or edema? I have both but sometimes not sure which is causing the numbness. Any thoughts welcome. Thanks!

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Hi @paul14, I have lymphedema in both legs along with small fiber peripheral neuropathy with only numbness and some tingling but no pain. I wear compression socks to help with the swelling in the legs. I've had the neuropathy since my 50s starting in my toes and now into my legs. I'm just a patient like yourself but it sounds like it could be a little bit of both edema and neuropathy, sort of chicken or the egg thing. I would think treating the edema is more important at this point.

Are you being treated for the edema? Do you wear compression stockings?

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@johnbishop

Hi @paul14, I have lymphedema in both legs along with small fiber peripheral neuropathy with only numbness and some tingling but no pain. I wear compression socks to help with the swelling in the legs. I've had the neuropathy since my 50s starting in my toes and now into my legs. I'm just a patient like yourself but it sounds like it could be a little bit of both edema and neuropathy, sort of chicken or the egg thing. I would think treating the edema is more important at this point.

Are you being treated for the edema? Do you wear compression stockings?

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Hi John:
Thanks so much for your reply. My PCP hasn't really been concerned with my edema given all the efforts that went into diagnosing the PN. He did a lot of blood tests and I had an ultra sound of lower extremities which were all clear. I do wear compression socks on and off, they help for a bit but I can't wear them for long periods. I agree it's chicken and egg, luckily the swelling isn't constant. This whole situation with PN is new and puzzling to me, today I had a numb feeling in toes of left foot which I hadn't felt before with the numbness going up the ankle. I can still wiggle toes but it seems like I've lost some sensory feeling there. I didn't expect it because I thought the stopping of B6 a month ago would have halted additional symptoms. My gait seems unaffected but it's still not a natural gait, it takes a lot more effort than it used just to walk. Glad you folks are there to bounce these things off of.

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Hi Heidi. I have not tried Capsaicin since the edema isn't constant. Interesting hack from the nurse in OR, I 'll have try it. As I told John, I do wear compression socks but can't wear them for too long. I agree the swelling comes back anyway. Elevation of legs always works best but you can't do that all day. I'm lucky I don't have nerve pain, just numbness, loss of feeling and changing gait. Thanks so much for these suggestions. I wish you all the best.

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