Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

I was hospitalized in January and February this year, yes both months, with severe sepsis. Im 50 years old, i immediatly began suffering from neuropathy so severe, it's ruined most aspects of my life. I an on gabapentin and tramadol, both low doses, but it's so hard to get any opioid prescribed, it's the only combination that seems to work but i run out of the tramadol a week too soon every month. I know my dr fights for me to get this medication every single month with insurance and's the Washington state board of whatever that regulates opiods. Im frustrated depressed and don't see much hope for things to improve, i just try and schedule all my engagements the first of the month because later on, I'm incapacitated miserable and wish to die.. anyone dealing with this too? It's getting progressively worse not better....
Thanks.

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I have PN, but you have it much worse than me and that kind of scares me. I am so sorry for what you are going through, but I would be very scared of using opioids. I just don't think I could go there, no matter how bad the pain was. Please don't take this as judging, I don't mean it that way. I just would worry about you taking an opioid on a reguar basis. I may be wrong, but I think opioids are only supposed to be subscribed for a ten day period? But, I totally sympathize with your condition. My feet and calves just seem to keep getting worse and I have read about amputation, which is what scares me if it continues to deteriorate. Again, can't get a doctor interested. I was diagnosed by a neurologist, but no longer go to him. He started me on Gabapentin and another neurologist increased the dosage. I was told to go to a Podiatrist and did so, but he just said there is nothing to be done for PN except to try to deal with the pain and discomfort. How far do you go doing nothing, before it gets too late and amputation is the only answer?? 🫢😩 Any advise would be appreciated.

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@tonyde

Try taking vitamin B12 injections (not pills). Vitamin B12 helps repair muscles and nerves.
My B12 levels were low normal, my neurologist had me taking B12 vitamin pills that didn't help. My primary care doctor recommended B12 injections, I take an injection every 1 to 3 weeks as needed. It doesn't make the pain go away, it makes it more tolerable, still have periods where the pain makes it difficult to walk. I feel my feet more with less sensation of walking on air. Unfortunately, I still fall down, my legs will buckle under me and I fall backwards. The falling may be related to my neuropathy, seizures, cardiac issues or all three.

I'm 72, sometimes feel 90 but still appreciate God letting me stay here a little longer.

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Physical therapy helped my PN.

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@jamiemartini

I was hospitalized in January and February this year, yes both months, with severe sepsis. Im 50 years old, i immediatly began suffering from neuropathy so severe, it's ruined most aspects of my life. I an on gabapentin and tramadol, both low doses, but it's so hard to get any opioid prescribed, it's the only combination that seems to work but i run out of the tramadol a week too soon every month. I know my dr fights for me to get this medication every single month with insurance and's the Washington state board of whatever that regulates opiods. Im frustrated depressed and don't see much hope for things to improve, i just try and schedule all my engagements the first of the month because later on, I'm incapacitated miserable and wish to die.. anyone dealing with this too? It's getting progressively worse not better....
Thanks.

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Welcome @jamiemartini, I can't even imagine how difficult it has been for you trying to deal with the neuropathy pain and also being in the hospital for two months with severe sepsis. I see that you have already found a couple of other discussions to look for other treatments that might offer some relief. My friend @artscaping might have some suggestions along with other members. I just deal with the numbness caused by my neuropathy. If you haven't seen the Foundation for Peripheral Neuropathy site - https://www.foundationforpn.org/living-well/, you might find some helpful information there also.

You mentioned that your doctor has been fighting for you trying to get medication that has been helping. Has your doctor offered any other suggestions or things to try to see if they offer any relief from the pain?

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@pworley1955

Physical therapy helped my PN.

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That's a good point, physical therapy also helped me somewhat. I continue to walk 1 to 3 miles dsily.

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@jamiemartini

I was hospitalized in January and February this year, yes both months, with severe sepsis. Im 50 years old, i immediatly began suffering from neuropathy so severe, it's ruined most aspects of my life. I an on gabapentin and tramadol, both low doses, but it's so hard to get any opioid prescribed, it's the only combination that seems to work but i run out of the tramadol a week too soon every month. I know my dr fights for me to get this medication every single month with insurance and's the Washington state board of whatever that regulates opiods. Im frustrated depressed and don't see much hope for things to improve, i just try and schedule all my engagements the first of the month because later on, I'm incapacitated miserable and wish to die.. anyone dealing with this too? It's getting progressively worse not better....
Thanks.

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From Physical Theraphy, I now have exercises, TENS and PEMF for neuropathy, having had to step down from opiods. It's not perfect, but it helps.

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@ospec

From Physical Theraphy, I now have exercises, TENS and PEMF for neuropathy, having had to step down from opiods. It's not perfect, but it helps.

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Welcome @ospec, Thanks for sharing what helps you get through the day with neuropathy. You mentioned exercises, TENS and PEMF have played a part in helping. Do you mind sharing a little more about your diagnosis and symptoms?

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@jamiemartini

I was hospitalized in January and February this year, yes both months, with severe sepsis. Im 50 years old, i immediatly began suffering from neuropathy so severe, it's ruined most aspects of my life. I an on gabapentin and tramadol, both low doses, but it's so hard to get any opioid prescribed, it's the only combination that seems to work but i run out of the tramadol a week too soon every month. I know my dr fights for me to get this medication every single month with insurance and's the Washington state board of whatever that regulates opiods. Im frustrated depressed and don't see much hope for things to improve, i just try and schedule all my engagements the first of the month because later on, I'm incapacitated miserable and wish to die.. anyone dealing with this too? It's getting progressively worse not better....
Thanks.

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Hi there.... i am sorry you are going through such a hard time. Palexia has been my best friend for way to long due to health condition's. My pain doctor would have me on CBD oil in a flash but in Australia the prescription oil we are not allowed to drive .... Have you tried Lyrica even 25mg's at night. I used to have high doses of this but now that my body isn't used to it anymore after my last surgery and i didn't know we could get it in such low amount... honestly i think i am going to stick with it because the difference is wonderful.

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@ospec

From Physical Theraphy, I now have exercises, TENS and PEMF for neuropathy, having had to step down from opiods. It's not perfect, but it helps.

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re the ask to share more info - diagnosis is still a work in progress, but i have small fiber showing up in the nerve conduction study as losing signal. so in short i have peripheral neuropathy in my feet/ankles without a good diagnosis yet as to the cause. i'm not diabetic, don't have high blood pressure, have not had chemo, am not on meds that could cause this and so on. it's in both feet so i've had an mri of lower back, a nerve conduction study, bloodwork and so on. PT was recommended while we continue to work towards an answer. The PT included stretching exercises, strengthening exercises, the use of TEMS. I am a BEMER distrtibutor, so i am using BEMER PEMF as well - it improves circulation and helps with pain. It has a treatment setting/cycle, and i use the mat in sleep cycle overnight each night as well. it makes a significant difference.

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I’m using B1Thiamine. Made a significant positive difference with 5,000+ mg. OTC

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