Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@margaretob

YES, legs and hands and feet. DIABETIC FOR 25 years on INSULIN and STATIN and a small BLOOD PRESSURE PILL…
Lately CHARLEY HORSES SO HORRIBLE I cannot take the pain. Used CALEB TREEZE ORGANIC stops leg and foot cramps
and it took away some of the pain. GOT Garapentin 300 mg to take at night. DOESN'T do a thing. Will see a NEUROLOGIST tomorrow and did call for an appointment. DIAGNOSIS already is DIABETIC NEUROPATHY in legs, hands and feet…left leg the worst. Heard it is progressive, and to walk and not let the legs go stiff. NIGHTTIME IS HORRIBLE…day just hurts…MargaretOB

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You can use Cramp 911 for the charley horse pain. It stops it in 15 seconds. I bought it at CVS, now I have to get it on Amazon. But i think that your pharmacy can order it for you if you don't use Amazon. It is homeopathic but it works amazingly well. My whole family uses it. I am using a cold laser device for the neurapathy pain and it is working for me and 2 of my friends and 3 relatives. I bought it from Amazon for $129, if you don't get relief you can return it to Amazon. I know the agony you are going through but thanks to the laser I am sleeping through the night without waking from the pain. .May God bless you

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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Pain and Numbness are on opposite ends of a scale, which makes finding the right balance for you difficult. For me, GABA had minimal effect at any dosage. Cymbalta worked, but gave me a distant feeling and memory issues. The third and last option, Lyrica, along with Tramadol, give me the balance. Lyrica is expensive, but a must. Stronger medications work for me, but the narcotic trade offs were not an option. I have pain and numbness from my toes to shins and both hands—all at different types of pain. Again, for me, Topical CBD ointments almost instantly calm the awful burning if used several times per day,. I also use sublingual CBD to help with the mental effect of pain producing pain, Relief is a moving target, but doable.

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@maryv449

You can use Cramp 911 for the charley horse pain. It stops it in 15 seconds. I bought it at CVS, now I have to get it on Amazon. But i think that your pharmacy can order it for you if you don't use Amazon. It is homeopathic but it works amazingly well. My whole family uses it. I am using a cold laser device for the neurapathy pain and it is working for me and 2 of my friends and 3 relatives. I bought it from Amazon for $129, if you don't get relief you can return it to Amazon. I know the agony you are going through but thanks to the laser I am sleeping through the night without waking from the pain. .May God bless you

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I have spent the last year trying all cbd combinations and many other salves and pain relievers – some would work for few days, but that was it. I read about the Cold Laser and immediately ordered one from Amazon for $129. I have been using it for one week and have been able to sleep all night for the past 6 days. Hopefully this will continue.
Most of the pain is gone, but the numbness still exists.

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@mstrasse1

I have spent the last year trying all cbd combinations and many other salves and pain relievers – some would work for few days, but that was it. I read about the Cold Laser and immediately ordered one from Amazon for $129. I have been using it for one week and have been able to sleep all night for the past 6 days. Hopefully this will continue.
Most of the pain is gone, but the numbness still exists.

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Excellent. Temporary relief: warm water soak, stretching to induce the numb feeling. Great shoes helped me—SAS. Unfortunately they are $$$. Good luck

Liked by lioness

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@artscaping

@jesfactsmon and @lorirenee1, Good evening. I have read your current posts. My heart just hurts for anyone beginning the Neuropathy journey and so I decided to jump in and convey that message for your wife Hank. I too raised the "NO WAY" flag for drugs that I would call dangerous.

The one place I have found relief is medical cannabis. I have spent several years reaching out to fellow users and dispensary team members. The industry is growing rapidly. With legalization will come money for research and laws that enforce product regulation.

In the meantime, I want to let you know that you do not have to get "high" on medical cannabis. You self prescribe and then evaluate the results. At this point, my pain management program is only medical cannabis tinctures and topicals. I have both SFN (small fiber neuropathy) and chronic myofascial pain syndrome. Combined with weekly MFR treatments, I add daily yoga, mindfulness, and meditation. Mindfulness practitioners have much to teach us and I will be going to a retreat for valentine's day.

Fatigue, I have not conquered. Any suggestions? And please know that I am happy to share products and dosages that may support your personal form of integrative medicine. Be safe and protected. Chris

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@artscaping Hi Chris, I have a nasty flu bug, so I will be brief. I so appreciate your input all the time. I am wondering how you control the high of the cannabis? There is THC in it, and it makes me high. If I take less, it does not help the pain. I buy Indica, and all contain THC. Although it helps pain, I am not liking it at all, because I dont like being high. Can you explain just a bit more? Maybe I am buying the wrong stuff? Thanks, Lori Renee

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@lorirenee1

@artscaping Hi Chris, I have a nasty flu bug, so I will be brief. I so appreciate your input all the time. I am wondering how you control the high of the cannabis? There is THC in it, and it makes me high. If I take less, it does not help the pain. I buy Indica, and all contain THC. Although it helps pain, I am not liking it at all, because I dont like being high. Can you explain just a bit more? Maybe I am buying the wrong stuff? Thanks, Lori Renee

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Hi Lori Renee – I hope you recover soon from the flu. Not what you needed, huh? I want to let you know that I experience the exact same problem as you with THC. The dose that actually numbs my body from pain also numbs my brain. I do not like feeling that way… dry mouth, dry eyes, brain fog, lethargic etc…. As I've mentioned, I rotate THC with hydrocodone to try and get best relief but, truth be told, I'm still in pain.

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@lorirenee1, and @rwinney, Hi there to both of you. I am going to try to kill two birds with one stone or whatever that saying is. Sorry about the flu. Just bird-dogging here…..did you get the super shot, Lori Renee? And by the way, thanks for the "atta girl". I try to be both honest and helpful. Connect is an amazing community of members, mentors, and moderators all learning by sharing.

Upfront, let's agree to admit that there is no perfect treatment or medication to eradicate and/or manage pain. They all help somewhat for some time. Now to your question about THC and getting high. "High" might mean different things to different folks. In my mind, I have been high only twice in four years. This means that I had to crawl because I couldn't walk. It lasted about 3 hours and was the result of me enjoying a Jack Daniels Special Select after doing the cannabis. You might think I had learned something…….and so several weeks later I did the same thing with red wine. Lesson finally learned…..no alcohol.

If you are talking about a sort of mild feeling of calmness although a bit giggly. I don't really call that being high. And it could be caused by any of the following:
You are using a product that goes through your digestive system…..maybe an edible or a capsule. It is best to use tinctures. Hold the dropper material under your tongue for a minute or so and it will be transferred directly to your bloodstream/brain.
Lori Renee, I don't quite know what you mean when you say you buy indica. Is your product an indica/Sativa hybrid or all THC or a CBD/THC mix? My suppliers don't build their products on strains. In a 3:1 you have 3 parts of non-hemp CBD and 1 part of high-grade THC. The chemical make up of CBD is very similar to that of THC. In fact, the CBD will actually calm the psychoactivity of THC. The trick is to get the dosage percentages right with products that are reliable so you can find the sweet spot. And your sweet spot may be different than mine but it should smother the pain and discomfort for 3 or 4 hours. Remember it is not a time-lapse product.

And here is my last contribution until I hear back from you with your opinions and questions. Just like other medications, we have to expect that we will have to upgrade to a stronger dose at some point along the journey or a larger amount at any dose. I have just upgraded some of my dosages from 2:1 CBD/THC to 1:1 CBD/THC for the first time because I needed a heavier knock on my door. I have also just learned that with tinctures I can take my first dropper as soon as I wake up without having to eat something. Now I am reasonably pain-free within minutes of getting up. I love that part.

By the way……you can also change your cannabis "menu" as needed. For example: here is mine right now.
a.m. — 1 full dropper of 1:1 CBD/THC
noon — or as soon as you feel the pain, needles, etc. coming back — 1 full dropper of 2:1 CBD/THC
dinner/p.m. — 1 full dropper of 1:1 CBD/THC
bedtime — 1 full dropper and a half of 2:1 CBD/THC (the extra 1/2 dropper is just the best way to ensure a good night's sleep

So…..you can see there is lots of experimenting to be done: which product, what amount, at what time. I just don't know an easier way…..remember we are our own prescribers and our own evaluators.

Just let me know what's next. Is this helpful? How would you describe the high that is bothersome? Does it scare you?

Joy is all around you…..grab some today. Chris

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@artscaping

@lorirenee1, and @rwinney, Hi there to both of you. I am going to try to kill two birds with one stone or whatever that saying is. Sorry about the flu. Just bird-dogging here…..did you get the super shot, Lori Renee? And by the way, thanks for the "atta girl". I try to be both honest and helpful. Connect is an amazing community of members, mentors, and moderators all learning by sharing.

Upfront, let's agree to admit that there is no perfect treatment or medication to eradicate and/or manage pain. They all help somewhat for some time. Now to your question about THC and getting high. "High" might mean different things to different folks. In my mind, I have been high only twice in four years. This means that I had to crawl because I couldn't walk. It lasted about 3 hours and was the result of me enjoying a Jack Daniels Special Select after doing the cannabis. You might think I had learned something…….and so several weeks later I did the same thing with red wine. Lesson finally learned…..no alcohol.

If you are talking about a sort of mild feeling of calmness although a bit giggly. I don't really call that being high. And it could be caused by any of the following:
You are using a product that goes through your digestive system…..maybe an edible or a capsule. It is best to use tinctures. Hold the dropper material under your tongue for a minute or so and it will be transferred directly to your bloodstream/brain.
Lori Renee, I don't quite know what you mean when you say you buy indica. Is your product an indica/Sativa hybrid or all THC or a CBD/THC mix? My suppliers don't build their products on strains. In a 3:1 you have 3 parts of non-hemp CBD and 1 part of high-grade THC. The chemical make up of CBD is very similar to that of THC. In fact, the CBD will actually calm the psychoactivity of THC. The trick is to get the dosage percentages right with products that are reliable so you can find the sweet spot. And your sweet spot may be different than mine but it should smother the pain and discomfort for 3 or 4 hours. Remember it is not a time-lapse product.

And here is my last contribution until I hear back from you with your opinions and questions. Just like other medications, we have to expect that we will have to upgrade to a stronger dose at some point along the journey or a larger amount at any dose. I have just upgraded some of my dosages from 2:1 CBD/THC to 1:1 CBD/THC for the first time because I needed a heavier knock on my door. I have also just learned that with tinctures I can take my first dropper as soon as I wake up without having to eat something. Now I am reasonably pain-free within minutes of getting up. I love that part.

By the way……you can also change your cannabis "menu" as needed. For example: here is mine right now.
a.m. — 1 full dropper of 1:1 CBD/THC
noon — or as soon as you feel the pain, needles, etc. coming back — 1 full dropper of 2:1 CBD/THC
dinner/p.m. — 1 full dropper of 1:1 CBD/THC
bedtime — 1 full dropper and a half of 2:1 CBD/THC (the extra 1/2 dropper is just the best way to ensure a good night's sleep

So…..you can see there is lots of experimenting to be done: which product, what amount, at what time. I just don't know an easier way…..remember we are our own prescribers and our own evaluators.

Just let me know what's next. Is this helpful? How would you describe the high that is bothersome? Does it scare you?

Joy is all around you…..grab some today. Chris

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Thank you as always for your experience and knowledge Chris. After 3 months of experimenting , I've found the closest thing to a sweet spot. There are many variables… such as best on empty stomach, line stomach with fat (I take big spoon of peanut butter or eat a handful of almonds) to avoid nausea, timing around other meds and on and on. And as you say, possible future tweaking. Aren't you just so proud of me for learning?!?! 😊

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Right now, severe pain in left leg, monstrous charley horse from thigh down to foot, trying to walk is painful, pain moves around to
other side of leg and calf, tried exercise, stretching, took a 300 mg. Gabapentin, nothing so far. Deep in groin is pinching hard and
painful. WHAT DO I DO NOW?

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@margaretob

Right now, severe pain in left leg, monstrous charley horse from thigh down to foot, trying to walk is painful, pain moves around to
other side of leg and calf, tried exercise, stretching, took a 300 mg. Gabapentin, nothing so far. Deep in groin is pinching hard and
painful. WHAT DO I DO NOW?

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Have you tried a warm bath soak with Epsom salts or heat packs?

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I too wake up with muscle cramps in my legs. Magnesium supplements made it worse, as did calcium, muscle relaxers didn't work. I found that I need to stretch after any exercise and at night in the shower when the warm water is relaxing the muscles, and stretch gently in the jacuzzi as often as possible. Also drink water – it's true that dehydration, even mild dehydration causes muscle cramps. We are all the same but we're also all different. I have to change medications or doses often – they work for awhile, then something else works, then in awhile I can go back to an earlier medicine and it works …
I used to think that allergies were fascinatingly complex – now I think that Neuropathy is complex and interesting. It takes up a lot of time that I would rather spend playing sports and writing and hanging with friends but that's life sometimes. We can either do it and keep doing it, or lay down and go to hospice or look around for something sharp to cut our veins with.

I grew up in Los Angeles, where people believe that the Purpose of Life is Pleasure; we manufacture the entertainment that the whole world buys. My husband grew up in New England where people believe that the Purpose of Life is Duty; you will have some pleasure along the way but anyone who pursues pleasure is shallow. We've been married for 31 years, each of us modified and compromised where necessary and I still ponder this concept of Pleasure and Duty at times.

Peggy

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@pfbacon

I too wake up with muscle cramps in my legs. Magnesium supplements made it worse, as did calcium, muscle relaxers didn't work. I found that I need to stretch after any exercise and at night in the shower when the warm water is relaxing the muscles, and stretch gently in the jacuzzi as often as possible. Also drink water – it's true that dehydration, even mild dehydration causes muscle cramps. We are all the same but we're also all different. I have to change medications or doses often – they work for awhile, then something else works, then in awhile I can go back to an earlier medicine and it works …
I used to think that allergies were fascinatingly complex – now I think that Neuropathy is complex and interesting. It takes up a lot of time that I would rather spend playing sports and writing and hanging with friends but that's life sometimes. We can either do it and keep doing it, or lay down and go to hospice or look around for something sharp to cut our veins with.

I grew up in Los Angeles, where people believe that the Purpose of Life is Pleasure; we manufacture the entertainment that the whole world buys. My husband grew up in New England where people believe that the Purpose of Life is Duty; you will have some pleasure along the way but anyone who pursues pleasure is shallow. We've been married for 31 years, each of us modified and compromised where necessary and I still ponder this concept of Pleasure and Duty at times.

Peggy

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@pfbacon – your discussion of regional thoughts on "what life is about" or "the purpose of life" is really interesting. I grew up in Marin County, CA, where though I loved the place and the people, I'd say the overriding concept there is "life is about stuff." This might be a really good solo discussion in the Mental Health group https://connect.mayoclinic.org/group/mental-health/, if you'd be interested in starting it.

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Yes, I remember those days, "the ME generation". Good idea – I might start something after I mend ,,, Peggy

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Yes. Epsom salts and heat packs helped for a few minutes, as does cbd and other creams and lidocaine patches/creams. What works for you?

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@pfbacon

I too wake up with muscle cramps in my legs. Magnesium supplements made it worse, as did calcium, muscle relaxers didn't work. I found that I need to stretch after any exercise and at night in the shower when the warm water is relaxing the muscles, and stretch gently in the jacuzzi as often as possible. Also drink water – it's true that dehydration, even mild dehydration causes muscle cramps. We are all the same but we're also all different. I have to change medications or doses often – they work for awhile, then something else works, then in awhile I can go back to an earlier medicine and it works …
I used to think that allergies were fascinatingly complex – now I think that Neuropathy is complex and interesting. It takes up a lot of time that I would rather spend playing sports and writing and hanging with friends but that's life sometimes. We can either do it and keep doing it, or lay down and go to hospice or look around for something sharp to cut our veins with.

I grew up in Los Angeles, where people believe that the Purpose of Life is Pleasure; we manufacture the entertainment that the whole world buys. My husband grew up in New England where people believe that the Purpose of Life is Duty; you will have some pleasure along the way but anyone who pursues pleasure is shallow. We've been married for 31 years, each of us modified and compromised where necessary and I still ponder this concept of Pleasure and Duty at times.

Peggy

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@pfbacon I grew up in PA where we had a sense of duty also

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