Painful Neouropathy (idiopathic) in feet rising up legs

Posted by Stretch @stress, 18 hours ago

I’ve had MECFS for 30+ years but functioned within limits while it progressed. Feet stayed icy and painful. One day after a .5 mile walk a severe pain attack hit my feet. I had to get off them and took Percocet until I could get to regular Internist. He concurred and continued the Percocet… .

The short version is I was referred to a hospital pain clinic. It was so restrictive and ‘papered’ that it felt like what I imagine a prison annex would be like - to control every tablet.

After much ado I got on a regimen of OxyContin, lasting for ~2.5 years. This made the otherwise high pain tolerable. However, I had a run in with a staff change doctor who must have had a mandate to get us PN’s off OxyContin. That seemed to be the case with others there as well, likely due to Rx abusers and addict stories in the news.

I left this unreasonable doctor who I did not even know after refusing his arbitrary mandate that Oxy was no longer necessary. The pain immediately escalated and I tried Gabapentin elsewhere - which I found to be about as effective as aspirin - nada.

So, I live with PN pain at about a ‘6-7’ level, very uncomfortable and home bound with a lot of sofa time. My walking is limited and the pain is progressing up my legs.

That was ~3 years ago and I’m considering attempting another pain clinic…after finding a GP to refer his best one. Clandestinely, I’m also thinking about seeing an attorney who is also an MD… . Being near age 80 doesn’t seem to help, irrespective of refinement.

Has anyone else been through resolving such malignment without legal involvement or did you find some work around, leverage to get the pain relief you needed?

Interested in more discussions like this? Go to the Neuropathy Support Group.

celia16 | @celia16 | 15 hours ago

I’m sorry to read about your pain. How do you manage?

My mother has neuropathic pain due to long term Vitamin B12 deficiency which she refuses to treat. She has treated it intermittently, but then stops treatment due to her medication phobia. She is under the belief that she is allergic to all meds and vitamins. She doesn’t absorb normally, so must take injections. So, she won’t get better, since she won’t take the injections. She is also severely deficient in Vitamin D.

She is very vocal about her pain and it makes it difficult for those around her. She’s not interested in pain meds. I would like to get her to a pain clinic, but I’m not sure what they could do for her. I just know I can’t be around a person who is that tortured ling term. It would be different if she tried to treat it.

How have you managed your pain without meds?

projfan | @projfan | 3 hours ago

In reply to @celia16 "I’m sorry to read about your pain. How do you manage? My mother has neuropathic pain..." + (show)

Celia, that's horrible for you and horrible for your mother.

I'm curious about the vitamin deficiencies. Presumably, this means she is OK with taking medical tests even if she rejects the recommended treatment. What do you suppose would happen if you arranged for her to get tested for allergies to a suite of vitamins and pain killers? Do you think she might believe the test results?

Do you think she would be willing to see a mental health professional about the medication phobia? Which would pretty much require her to be aware that it actually is a phobia, and believe that medication might work if she could bring herself to try it.

In the meantime, you might want to ask a new question on this site about people's experience managing neuropathy pain without meds. Or even just ask whether a pain clinic can do anything for someone who refuses to take meds, vitamins, or supplements. I suspect, though, that even if the clinic can find something to try (which seems likely, even if it isn't a first-line treatment), insurance may not cover it if she refuses to solve the underlying problem and solving the underlying problem is cheaper. Which brings us back to testing for the allergies she thinks she has -- if she really has them, then insurance might handle it differently.

julbpat | @julbpat | 3 hours ago

I was a patient at a large pain clinic, where the doctors wrote stacks of prescriptions ahead of time. You saw the nurse practitioner, and if you answered the questions correctly, you earned your prescription. That’s my short description. I was scared to leave, but finally made some inquiries, and now see a pain specialist who is part of a large orthopedic group that I have a long and ongoing history with. The difference is night and day. The NP asks detailed questions about all of my various medical concerns, and my pain prescription has been changed as needed, which actually is rare. I take Percocet 7.5mg 1/2 three times per day as needed - a very low dose.