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 group.

@helennicola someone on this site warned me about possible vision loss from Cymbalta

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@bustrbrwn22

@helennicola someone on this site warned me about possible vision loss from Cymbalta

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@bustrbrwn22 @helennicola
Hi Jen, Helen, fyi, here is the post where @lacy2 discussed that relationship between eye issues and Cymbalta:
https://connect.mayoclinic.org/discussion/when-things-just-dont-get-better/?pg=9#comment-462593
Best, Hank

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Lyrica. I have had peripheral neuropathy for 15 years and I take 200mg twice a day but that is a pretty high dose. The bad thing is, it only gets worse. Sorry

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@jesfactsmon

@bustrbrwn22 @helennicola
Hi Jen, Helen, fyi, here is the post where @lacy2 discussed that relationship between eye issues and Cymbalta:
https://connect.mayoclinic.org/discussion/when-things-just-dont-get-better/?pg=9#comment-462593
Best, Hank

Jump to this post

Hi Hank… our paths havent crossed for a while.
Just wanted to clarify that there is lots of information about Cymbalta and other similar meds and possible effect on eys etc.
In my case, I already had narrow angle glaucoma and was warned by the specialist who is a well known authority on Glaucoma about meds raising eye pressure.
Even when I saw , just once for an interview, an amazing psychiatrist who suggsted another antideprssant my pharmasist faxed the specialist to ask if i could take it (I had told pharma I couldnt) because but he had found an article stating those with wide-angle glaucoma could take it:) the specialist returned the fax and hand wrote on it NO, she cannot take Not Cymbalta but Welbrutin.
. I was told by my optometrist that once I had Iridotomy (laser holes in eyes to release pressure)(which I did March 2020) I could then take meds that raise eye pressure but it hasnt turned out that way….. its been so hard on my nerves I cant tell you because I am scared to take any/many meds, even steroid, "just in case" and even Visine for Red Eyes says dont take if have Glaucoma – but confusion is they dont differentiate between narrow angles, wide angles or "treated" Glaucoma (eg have had an operation to release pressure).
I feel a need to share this information because some doctors have not idea about the correlation… but I don't want to scare anyone off or suggest they dont take it – but to please check with doctor and if necessary print off the pages from Internet from reliable sources? One alarming thing, even during visit to specialist and talking to his Fellow and my own doctor, therapist and pharmacist, no one, no one, told me that the Clonazepam I was and still take can raise eye pressure and her I was avoiding jsut about everything else but still taking it due to "ignorance" of that fact.
Am having a bad flare up of neuropathy in that it has morphed into internal tremors and months to wait to talk to a neurologist… am having a self pity party right now but wanted to explain above, take care, stay safe, J. ps. sorry if above a bit mixed up am having trouble typing today..

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@lacy2

Hi Hank… our paths havent crossed for a while.
Just wanted to clarify that there is lots of information about Cymbalta and other similar meds and possible effect on eys etc.
In my case, I already had narrow angle glaucoma and was warned by the specialist who is a well known authority on Glaucoma about meds raising eye pressure.
Even when I saw , just once for an interview, an amazing psychiatrist who suggsted another antideprssant my pharmasist faxed the specialist to ask if i could take it (I had told pharma I couldnt) because but he had found an article stating those with wide-angle glaucoma could take it:) the specialist returned the fax and hand wrote on it NO, she cannot take Not Cymbalta but Welbrutin.
. I was told by my optometrist that once I had Iridotomy (laser holes in eyes to release pressure)(which I did March 2020) I could then take meds that raise eye pressure but it hasnt turned out that way….. its been so hard on my nerves I cant tell you because I am scared to take any/many meds, even steroid, "just in case" and even Visine for Red Eyes says dont take if have Glaucoma – but confusion is they dont differentiate between narrow angles, wide angles or "treated" Glaucoma (eg have had an operation to release pressure).
I feel a need to share this information because some doctors have not idea about the correlation… but I don't want to scare anyone off or suggest they dont take it – but to please check with doctor and if necessary print off the pages from Internet from reliable sources? One alarming thing, even during visit to specialist and talking to his Fellow and my own doctor, therapist and pharmacist, no one, no one, told me that the Clonazepam I was and still take can raise eye pressure and her I was avoiding jsut about everything else but still taking it due to "ignorance" of that fact.
Am having a bad flare up of neuropathy in that it has morphed into internal tremors and months to wait to talk to a neurologist… am having a self pity party right now but wanted to explain above, take care, stay safe, J. ps. sorry if above a bit mixed up am having trouble typing today..

Jump to this post

@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

REPLY
@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

Jump to this post

@jesfactsmon send Linda my best. Sorry to hear about her pain level

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@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

Jump to this post

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

REPLY
@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

Jump to this post

@hank Does it ever end? Just left message at dentist to find out what meds they use in freezing and want to double check them with internal tremors(even neuropathy I suppose).. its things like dental freezing, ointments, eye drops, etc. that I/we tend to forget as being oral meds eh? I too sorry to hear your partner has had bad days…. friend of daughters actually goes out in snow in bare feet (not when really freezing) to cool off her feet. Thanks for asking about husband: Had nurse in daily for 2.5 months and now every 3 days to change bandage on scar on let, only one "hole" left in scar… unbelievable. He hasnt gained weight but sleeping a bit better now blood out of lung but has a bit of fluid in there still…his G.P. not too worried. Sadly his cigarette smoking is increasing a little from the a day but honestly with lock down from Covid and my being ill too, gotta do something ! Addictions are hard to break. He has cut down a lot tho. He is driving but just to and from grocery store and to my medical appointments….boosted his confidence. Am feeling the pain of those living in Texas… we have a lot of it on our news… our fear in Winter too , losing hydro. OUr furnaces are mostly natural gas but have to be started by hydro! Lots of people used to have wood burning fireplaces in their homes but got rid of them over the years, but sure handy in a storm, but have to have kindling and wood! Sad times. J.

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@helennicola

Hi Chris, how are you? glad you fared well with your COVD vacs. After reading your post it seems you are taking Gabapentin, Cymbalta, and MM to control your symptoms. I have considered Cymbalta (Duloxetine) per my neuro suggestion but MM is not yet legal in my state.My question is: do you have any side effects/interactions from the cymbalta and/or gabapentin? My neuropathy has become somewhat worse lately and the non-thc CBD doesn’t seem to help but after reading side effects of duloxetine I am hesitant. The gaba does put me to sleep but I now am looking for something to take during the day. Thanks, Helen

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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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@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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@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

Jump to this post

@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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