Neuropathy pain.

Posted by jlor @jlor, Sep 21, 2018

Hello, I have had this so called"neuropathy" for almost two years now, it began in dec 2016, symptoms got worse over the next few months, my a miracle, my symptom subsided in June last year, however, symptoms returned with a vengeance in November last year, almost 6 months symptoms free. I have severe burning and very painful tingling sensa.tions in my feet, primarily my right foot, left foot I can bear, in fact when I'm out and about, I don't feel symptoms in my left foot, but right foot is hell. Have tried , I think everything this planet can offer, now I'm on gabapentin, 800 mg 4 times a day, tried, duloxetine, tried amytriptyline , neurologists last year said I had axonal sensory neuropathy, skin biopsy last year, negative for small fiber, ncv this year was fine. I'm now seeing as a last resort a chiropractor specializing in neuropathy and I'm undergoing laser and electrotherapy. Can someone recommend other meds that can help, this pain is really excruciating. So far my hands are clear.

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

Profile picture for Chris, Alumni Mentor @artscaping

Hi, there my paper neighbor.......@helennicola. Let's see if I understand. I think I said and actually do the following: My day begins with duloxetine (which I am very happy with....anti-anxiety for the day and anti-depression) and a 1:1 tincture CBD/THC unless I will be driving and then I use a 2:1 CBD/THC. That's it until some easy 2:1 in the "lazy afternoon".

And in the evening.......about 9:30.....900 mg of Gabapentin. (that's 3 of the 300mg.) It starts to work right away and helps me sleep without all the numbness, tingles, and even worse, the needles. I do notice a bit of unsteadiness if I get up to use the restroom after midnight....just be aware. Just as I nestle in for the night I do a tincture of the 2:1 CBD/THC. I seldom wake up until late morning. That is because living with constant pain and other aggravating sensations just wears me out. And yet, if you are too fatigued, you become a bit depressed and then can't sleep.

This regime does take a commitment. Really messes up my day if I forget something along the way. And yet....it makes my day relatively predictable unless the itch crops up. I think you just need to be observant......and notice when you need to make adjustments. I don't know where you are......not CA or OR. You can travel to CA????

I sometimes read that now even 100% CBD can be helpful without any THC. The quality of the plants can make a difference. Fortunately, I haven't had to go down that path.

Let me know how this all works for you. I want to think of you as resting peacefully.
Chris

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Hi Chris, I am in NC and have CBD available and had purchased CBD/THC while in Ca. a year ago. I was concerned about combining the gabapentin, CBD and duloxetine wondering if you experienced any problems initially. I’ve decided not to try the Duloxetine even though you’ve had success for which I’m so glad. So Sorry you had to repost all that again! 😔 🙄 😁 Stay well and thanks once again. Helen

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Profile picture for avmcbellar @avmcbellar

Hi Hank @jesfactsmon I am so sorry to hear Linda has a terrible bout with neuropathy in her feet. I know many Mayo Clinic members have reported that after receiving the covid vaccine their neuropathy symptoms worsened. I hope this is a temporary situation. Tell her to hang in there. I have heard many say the side effects were worse with the second dose. I am assuming she got the Pfizer vaccine. Did you get the vaccine as well? Are you experiencing any negative reactions?
I have heard by definition it should not be called a vaccine because a vaccine prevents an outbreak of an illness instead of decreasing the effects of the illness. I also had heard the medication should be labeled as “gene therapy”. It is hard to say what is best to do since there is not much known with the effects of the virus or the medications. Best wishes to you both. Toni

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@avmcbellar
Thanks Toni. Yes Linda had the first dose of the Pfizer and she had no issues. I go next month I guess. Did you get yours?

I have read references lately that our society is going to achieve herd immunity by May or so. If true it would be amazing, and I would love to avoid taking the vaccine if possible. But do not know if it is really true or not.

Hope you are doing well. Hopefully you guys (in Fla.) did not get as cold as we did the last week! Best, Hank

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@lacy2
Hang in there JS. You guys have so much on your plates! Good to hear he is driving now, that sounds like a positive sign, no? But too bad he feels the need to smoke, that certainly does not help him. But as you say, addictions can be pernicious little devils. As time goes on he should get more strength as he recovers more from the open heart surgery. It does take time though, that is invasive surgery!

I am not familiar with "hydro" for a furnace? It sounds like it's something you need to buy and have on hand to start it? Sorry, this is a new one on me, but if it's something you could run out of then that is certainly a worry. Hope you are able to remain stocked up with it. Best to you and your husband, Hank

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Profile picture for Hank @jesfactsmon

@lacy2
Hi JS, nice to hear from you but sorry to hear about your flare. Linda, my wife, has had a terrible one for about 3-4 days now, her feet are just burning SO BADLY. Very little to be done except use M.Marijuana occasionally.

It was kind of you to clarify your earlier take on the Glaucoma issue w.r.t. Cymbalta, for others benefit, such as Jen & Helen. One really must be very careful about taking anything, even if prescribed by a doctor. They are clearly not infallible.

Hope things are OK in Ontario with both yourself as well as your husband. How is his heart surgery recovery going? Is he able to be up and about now?

Best, Hank

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Hi guys , I have just had a quick read of bogth of your posts. If there is a problem with eyes, then the only person you should be consulting is a Neuro Ophthalmologist. They are scarce here in Australia, but having waited for six months it is fiŕst week of next month. A normal Ophthalmologist is not good enough. But good luck and best wishes.

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I haven’t tried them yet but read that TENS can help.

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Profile picture for Hank @jesfactsmon

@avmcbellar
Thanks Toni. Yes Linda had the first dose of the Pfizer and she had no issues. I go next month I guess. Did you get yours?

I have read references lately that our society is going to achieve herd immunity by May or so. If true it would be amazing, and I would love to avoid taking the vaccine if possible. But do not know if it is really true or not.

Hope you are doing well. Hopefully you guys (in Fla.) did not get as cold as we did the last week! Best, Hank

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Hi Hank, that would be great but I keep reading about the large percentage of people polled who do not want and refuse to get the vaccine (30-50%). We need a higher percentage of vaccinated in order to achieve herd immunity. Helen

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Profile picture for hopalongnm3 @hopalongnm3

I haven’t tried them yet but read that TENS can help.

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@hopalongnm3 - There is another discussion on using a TENS unit that you may want to join in and read what others have shared.

- Has anyone had success using Tens on their feet?: https://connect.mayoclinic.org/discussion/has-anyone-had-success-using-tens-on-their-feet/

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Profile picture for Barry Sheales @user_che214927

Hi guys , I have just had a quick read of bogth of your posts. If there is a problem with eyes, then the only person you should be consulting is a Neuro Ophthalmologist. They are scarce here in Australia, but having waited for six months it is fiŕst week of next month. A normal Ophthalmologist is not good enough. But good luck and best wishes.

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Hi Barry, i’ve been reading more info on neuroplasticity: there is an app called “CURABLE HEALTH” which offers a step-by-step guide for those wanting to overcome their constant pain when drugs don’t help. I also suggest reading “Esthermariesmith.com” to find out more about Michael Moskowitz who has been researching and teaching about neuroplasticity for 10+ yrs. This science of mentally overcoming pain does work, but not for everyone as it involves much time and motivation. Helen

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Profile picture for Chris, Alumni Mentor @artscaping

Hi, there my paper neighbor.......@helennicola. Let's see if I understand. I think I said and actually do the following: My day begins with duloxetine (which I am very happy with....anti-anxiety for the day and anti-depression) and a 1:1 tincture CBD/THC unless I will be driving and then I use a 2:1 CBD/THC. That's it until some easy 2:1 in the "lazy afternoon".

And in the evening.......about 9:30.....900 mg of Gabapentin. (that's 3 of the 300mg.) It starts to work right away and helps me sleep without all the numbness, tingles, and even worse, the needles. I do notice a bit of unsteadiness if I get up to use the restroom after midnight....just be aware. Just as I nestle in for the night I do a tincture of the 2:1 CBD/THC. I seldom wake up until late morning. That is because living with constant pain and other aggravating sensations just wears me out. And yet, if you are too fatigued, you become a bit depressed and then can't sleep.

This regime does take a commitment. Really messes up my day if I forget something along the way. And yet....it makes my day relatively predictable unless the itch crops up. I think you just need to be observant......and notice when you need to make adjustments. I don't know where you are......not CA or OR. You can travel to CA????

I sometimes read that now even 100% CBD can be helpful without any THC. The quality of the plants can make a difference. Fortunately, I haven't had to go down that path.

Let me know how this all works for you. I want to think of you as resting peacefully.
Chris

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Hi again Chris, I don’t know if you have tried all these possible itch solutions but I have written them down when I learn of them but keep forgetting to tell you! Please excuse if they are redundant and I can’t remember sources but here goes: Quercetin w/bromelaine, Evening Primrose w/vit. E, Hydroxyzine, onion skin powder, Dapsone, Adaptive essential oil, carbamazepine, oxcarbazepune. I’m not sure if I got spellings correct but just FYI! And wishing you be itch free! 😊 Helen

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Profile picture for helennicola @helennicola

Hi again Chris, I don’t know if you have tried all these possible itch solutions but I have written them down when I learn of them but keep forgetting to tell you! Please excuse if they are redundant and I can’t remember sources but here goes: Quercetin w/bromelaine, Evening Primrose w/vit. E, Hydroxyzine, onion skin powder, Dapsone, Adaptive essential oil, carbamazepine, oxcarbazepune. I’m not sure if I got spellings correct but just FYI! And wishing you be itch free! 😊 Helen

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Oh my goodness....thank you for contributing your time to help me learn more. I have heard of some of those and currently use Hydroxyzine, an antihistamine, but only when I am pretty desperate as it makes me a slug. I will print those out right now and begin a search party.

May you have joy and happiness......
Chris

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