1. < Neuropathy

Painful Neouropathy (idiopathic) in feet rising up legs

Posted by Stretch @stress, Jan 10 4:59pm

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 | Jan 12 8:50am
In reply to @projfan "Bipolar is really tricky -- worked with someone once who struggled with this, and all the..." + (show)
@projfan

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.

Jump to this post

You nailed it. I have thought the same thing about identity and illness recently. It’s as if it becomes so much of your life, it’s difficult to let it go. So sad.

Interesting idea about the compounding pharmacy. She does use one and I’ll inquire about the feasibility of doing B12 and D.

I think it’s interesting that she has always liked diet pills. Never met one she didn’t love. No problems with those. She’d take them or Ozempic now, if she could get a prescription. Lol. Bizarre.

I take daily Magnesium orally. I don’t think it’s caused me any issues. Glad your ointment is working.

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fenn47 | @fenn47 | Jan 13 2:58am
In reply to @celia16 "I’m sorry to read about your pain. How do you manage? My mother has neuropathic pain..." + (show)
@celia16

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?

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I’ve also been told that i have a deficiency in Vitamin D & B12 which I don’t mind taking. But I also hate taking prescription medication…they haven’t helped and make me feel like a zombie.

For me neuropathy started after having Covid and then having Pfizer vaccines x 3

I’m not sure what the answer is. I don’t think its going to go away so I try and deal with it with positive thinking/ a little exercise / swimming.

I find this neuropathy site very informative and encouraging to know you’re not the only one dealing with this problem

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pghspinupgal | @pghspinupgal | Jan 15 10:42pm

Wow! i’ve yet to hear of anyone having sane issues as me ! started numbness in toes then went up to my ankle, then started up my calf now it’s up past my knees. Doctor basically are just medically. Gaslighting me and brushing me off. They won’t give me any pain medicine. I’m on gabapentin as well., my my balance is so bad I won’t even go out in public without my husband or children i don’t kno what to do … feelin hopeless

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1 reply
avalyn | @avalyn | Jan 21 9:59am
In reply to @projfan "Bipolar is really tricky -- worked with someone once who struggled with this, and all the..." + (show)
@projfan

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.

Jump to this post

What is the name of the commercial magnesium skin product you use?

REPLY
1 reply
projfan | @projfan | Jan 21 11:26am
In reply to @avalyn "What is the name of the commercial magnesium skin product you use?" + (show)
@avalyn

What is the name of the commercial magnesium skin product you use?

Jump to this post

There are a variety of brands, but this is the one I've been using.
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1 reply
matthewbgilmore | @matthewbgilmore | Jan 22 5:01pm

I go to a chiropractor (also does acupuncture). See if you can find a good one.

REPLY
celia16 | @celia16 | Jan 22 5:48pm
In reply to @projfan "There are a variety of brands, but this is the one I've been using." + (show)
@projfan

There are a variety of brands, but this is the one I've been using.

Jump to this post

I ordered this for my mom. Hope it helps her.

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efgh1020 | @efgh1020 | Jan 23 10:46am
In reply to @pghspinupgal "Wow! i’ve yet to hear of anyone having sane issues as me ! started numbness in..." + (show)
@pghspinupgal

Wow! i’ve yet to hear of anyone having sane issues as me ! started numbness in toes then went up to my ankle, then started up my calf now it’s up past my knees. Doctor basically are just medically. Gaslighting me and brushing me off. They won’t give me any pain medicine. I’m on gabapentin as well., my my balance is so bad I won’t even go out in public without my husband or children i don’t kno what to do … feelin hopeless

Jump to this post

I felt hopeless too after a quick-moving neuropathy that hit me after spinal fusion surgery for stenosis in my spine. MRI's showed later that the spinal nerves were fine, but I had (that was determined by two neurologists) was an autoimmune reaction to either the surgery or a number of other variables. I could not stand or walk at all, this after an active life. One of the first things I did was to see a family therapist so that my husband and I could cope with these changes. She helped me keep my focus on the day and not imagine only a dark future. Low dose antidepressants helped restore some depleted serotonin, after being on such an emotional roller-coaster.
My family have been great, and I eventually found a concerned and involved neurologist and physical therapist. My strength and endurance in my legs has improved, and further nerve inflammation and pain have been halted with IVIG infusions monthly for the last three years.
We bought various equipment and were covered by insurance for a power wheelchair. I use it for long distances but can use a rolling walker around the house and for short walks. This progress has taken more time than I wanted, but I will continue to move as much as I can and work with my PT.
After one of my stays in a physical rehab, friends made me a gift of a decorative board with one word on it--"HOPE." It's a word I offer you now. I'm glad you're here, and so is your family.

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