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katec (@katec)

Small Fiber Neuropathy burning?

Neuropathy | Last Active: May 23, 2020 | Replies (41)

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@jimhd

Hi Kate @katec I continue to pray for your son every day. My neuropathy pain is a burning pain that began in the balls of my feet, but has made its way up to my ankles. So far the rest of my extremities are only mildly affected. Sometimes the burning feels freezing at the same time. Starting 2 weeks ago I had to stop wearing socks because contact with even soft things hurts. It's the middle of winter here, so my feet are cold, but this coldness isn't the same as the burning/freezing pain that's always there.

Have you found anything that eases your son's pain? You mentioned once that he wasn't helped by a drg stimulator. Did it have any effect at all? Did he experience any negative effects from it? Has he tried a topical cream for this new pain? Sometimes lidocaine cream numbs my pain long enough to get to sleep. Medicare no longer covers it, but I found Uber Numb on Amazon for $16.00. When Medicare did cover it,my copay was $120.00. Uber Numb is the same 5% lidocaine as the prescription. Again, very much temporary and only takes the edge off the pain. I have an appointment with a doctor next month to look at what my options are before she does the drg implant.

Our hope is that the day will come when a cure is discovered for nerve pain. I don't know how high on the priority list neuropathy is, though I see trials for new treatments going on all the time. One can hope and pray.

Jim

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Replies to "Hi Kate @katec I continue to pray for your son every day. My neuropathy pain is..."

@jimhd Your prayers are so appreciated!! I cannot thank you enough for them!

He had a DRG trial last summer. He didn’t get any relief from it (no ill effects either other than with the trial device it’s awkward to move around with the wires and tape) and it baffled the drug rep and pain doctor. He would feel the sensations of the DRG in all the right places (where he had pain) when they would adjust it but it never provided any pain relief. It was disappointing, but it was just added to our long list of things tried for pain relief that failed. So far, we still haven’t found anything. Insurance is still reviewing his case for IVIg, so even though it’s taken a long time, at least they haven’t said “no” yet! If he does get approved, who knows when he could start it with the quarantine.

We have some lidocaine that’s been prescribed in the past that I will offer him if it bothersome tonight when he’s winding down. This quarantine is tough on him because he can’t go on walks or hikes around the neighborhood because it just hurts so much, but he has all this energy and desire to do stuff. Since it’s supposed to stop raining this week, we will heat up the pool for him but since he’s a kid he’ll want to run around it, wrestle with his brother, jump around etc so he’s in pain then too. Oh well, one day we will find something that works for him!

I hope you have great success with your DRG, if that’s the route you choose to go. Everyone deserves to not be in pain and do the things they want to do!!

Stay safe and busy during this quarantine!!

@jimhd One thing I mentioned before there is a cream you can buy O.TC Topricin cream it's for neuropathy and fibromyalgia I use it before bed It works They have it at CVS or online

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