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.

@artscaping

Oops, forgot something.. have you had a skin biopsy for SFN.....small fiber neuropathy. Chris

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No, and was not mentioned in conversation with my GP (Doc) at the time he diagnosed my PN.
Will run this by him shortly when we discuss meds.

I believe in the "Mind over matter" approach to coping with my level of PN and also try to keep occupied which seems to help.

A bit of a "high" on MC sounds ok to me - Lol.
Bill

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@artscaping

Good evening @billjim651 and thanks for your post suggesting that you may try gabapentin. It was the first prescription I was given 5 or 6 years ago. Initially, 1200 mg was too much for me. Gabapentin and I had a rough start. What did work for me was nortriptyline for nighttime sleep. We changed the dosage and, moved gabapentin to 900 mg in the evening. Then I tapered off Nortriptyline and replaced that with duloxetine, currently rated as one of the best Rx for neuropathy.

Gabapentin for some is a daily go-to and allows modification in dosage and the dosage time. I found out how valuable it was one night when I forgot to take it. A really bad memory. For me, this medication shuts down the machine that creates numbness, tingling, and even some gut-wrenching evening pain.

The need to be somewhat calm and relatively pain-free on a good golf day demanded the best from Medical Cannabis. You are your own clinician and pharmacist. I think you might even be able to play the back 9 after a nice lunch. Let me know if you would like specifics. Fighting this condition is a challenge. Don't give up.......knowledge is power. Dig in and learn about your options. Just make sure you don't get sucked into pricey machines and treatments. As @johnbishop reminds us.....there is no cure....just rather simple ways to get the most out of living with neuropathy.

Now that I have written this, I am missing golf.
Be safe and protected.
Chris

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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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@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

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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..

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@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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@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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@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

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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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