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.

@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.

REPLY
@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

Jump to this post

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

REPLY
@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

Jump to this post

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

REPLY
@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

REPLY
@lacy2

@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.

Jump to this post

@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

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

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.

REPLY
@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.

Jump to this post

Hi Barry. You are in Australia - nice. My daughter has friend there, was her bridesmaid; she also went to
Ayer's Rock and balloon-basket ride. When I moved to Canada alone at 18, the other location would have been Australia.. my friend moved there and I lost address. Anyway, thanks for the comment - where I live and I cant travel, we have quite a few Optometrists, two "new" Ophthalmologists (wait of of year or more if not urgent and no Neuro-one. Might be and probably are some in Toronto..... that's a long wait, us too... with our aging population need many more ... of all types of Super Specialists. J.(Canada)

REPLY

Hi @hank... coming from UK where most houses are built on ground level, I was surprised at the Canadian (Ontario) houses had basements in which there is/are a "furnace".. which draws in cold air, heats it with natural gas or years ago, oil, then pumps it through pipes into each room. Having central heating after living in UK with a small coal burning fireplace in living room and kitchen, it was so nice to be warm in each room. In UK in winter we would line up at night while Mum boiled a kettle to fill each of our hot water bottles! Thanks for thoughts about husband... the chest wound on outside healed up but its the leg wound. my adult daughters wont even look at photos. To removed the vein to put in the heart its a severe cut, not like a neat surgery scar with stitches. No stitches, gaping and fluid would drip out and then got gaps and several "holes" in. Dealing with this while no one noticed he had blood in one lung for 4 weeks didnt help. Good news that dressing on leg only changed every 3 days now - its a wound from under knee to ankle. I was upset that infection might set in as it can but didnt.... he is on about 15 pills a day. He doesnt complain or talk about it much but the fitter he gets the more I let out complaints about my health that I tried not to talk about til he felt better! Honestly, I am just getting depression under control and now these internal tremors and having tooth extractins and wondring if the freezing meds are interacting with my meds.. which causes me stress, plus my othr odds and ends and still waiting for phone call from ENT about ear issues and its just a phone call re Covid. I am healthier than so many more, but not as healthy as others - fact of life. It is hard to cope some days tho isnt it? Take care, J.

REPLY
@jesfactsmon

@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

Jump to this post

@hank p.s. Hydro = electricity. Canadian term, eh? J.

REPLY

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

REPLY
Please sign in or register to post a reply.