Painful Neouropathy (idiopathic) in feet rising up legs

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?

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.

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.

I’m curious if you made the contact directly or if you were referred? There’s a well reputed pain clinic nearby but they won’t even return the call without some kind of code (known identifier). FWIW, I’m in North Atlanta, GA.

Chiropractor had seminar.

That’s an excellent idea about suggesting she get tested for allergies to Vitamin B12 and D. I doubt she’ll agree, but I’ll try. She believes all medications cause her to feel sick of get racing heart rate or feel funny. It’s classic medication anxiety, but she won’t acknowledge it. She’s okay with meds applied to the skin like ointments or lotions.

I have asked her to get therapy for her anxiety many times before, but she refuses. She’s been resistant to any meds for depression and anxiety, though she was on Prozac for a while years ago and said it helped. I actually believe she is bipolar, but refuses treatment. It’s made her quite miserable for many years.

My pain clinic first started me on Tramadol and my internist has continued prescribing it. I can get by with 2 a day and they have made a huge difference in my life!! I am out and about living my life again! By all means go to another pain clinic.

I had neuropathy that started on my foot and has been coming up my leg. A Neurologist tested, said "yep, you have neuropathy". I have an ankle replacement and blamed it on that. Lived with it for 5 years. Then I went to a new Podiatrist. He took some measurements and thought my hip might be causing it. Suggested a 1/4" heel lift in that shoe. After 2 weeks, my neuropathy is gone.

Bipolar is really tricky -- worked with someone once who struggled with this, and all the meds (at least at the time) had such side effects that when they worked, he decided he was cured and went off them. And then, of course, his behavior turned problematic. The whole thing made him miserable, too.

Sounds like she is also dealing with strong placebo/nocebo effects, which is something I don't think we take seriously enough -- that is, how much of the success or failure of medical treatments is actually in the brain's expectations of what will happen when they take a pill, get a shot, or even have a conversation with a doctor that is or is not supportive. Makes me also wonder whether a compounding pharmacy (and I'm normally rather skittish of compounding pharmacies) could make a vitamin B12/D lotion for her to use. It would need to be in some form of carrier that would take it through the skin, and would probably be very inefficient, but maybe?

I'm now taking magnesium as a migraine preventive through the skin rather than orally (it's a commercial product). I was skeptical at first, but it seems to be working.

After a while, too, your identity can get wrapped up in your illness. Part of you wants to get better and hates the illness, but another part of you doesn't know who you are without the illness, and is terrified of dealing with that. I have no idea how to tackle that problem.

That’s incredible! So glad you found such relief.