Chris Trout, Volunteer Mentor | @artscaping | Jan 25, 2020
@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
@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
Well actually @artscaping , we are positively disposed to the idea of medical marijuana. The drugs my wife will not do include all opioids, as well as things like duloxetine or steroids or pretty much anything that comes from a pharmaceutical company. We plan to definitely try marijuana as soon as it is legal in Tennessee. She has tried the illegal stuff enough to know it does effectively eliminate the pain for a few hours, so when the medical "no high" version becomes available it seems like that will be a useful tool for relief.
You asked about help with fatigue. One way that has helped my wife overcome fatigue is by taking a set of mitochondrial boosting supplements. As you may know, our energy is produced by the trillions of mitochondria that live in almost all cells of the body. They produce ATP, which is what we need to have energy. So anything we can do to make them healthier is a good thing. Here are the things she takes regularly: MitoQ, Niagen, Acetyl L Carnitine, L Carnosine, PQQ and NAC. The MitoQ is like a super Co Q10 because it crosses the blood-brain barrier and is much better absorbed. My wife is convinced it has helped as much as anything in fighting her ongoing energy issues and all of these combine to give her more energy to be able to endure pain and still function at a reasonable level. I would say of the 6 things I mentioned, the first 3 (MitoQ, Niagen and Acetyl L Carnitine) are the ones that she has noticed a benefit from the most and the last 3 (L Carnosine, PQQ and NAC) it's tough to tell. But in reading about them all, they all relate to boosting mitochondria. If anyone knows of any I did not mention I'd like to hear about them. I myself noticed a boost from taking Acetyl L Carnitine. When I was doing my regular hikes in the mornings I noticed a definite fall off in energy a couple years back when I was about 65. Very soon after starting the ALC I became more like my previous self who could march up and down hills with verve and joy! It was wonderful. So I really can attest to the benefits of that supplement. Niagen gives me the abilty to focus. My wife takes it every day but I do only on days when I have to do a lot of driving or when I will be doing a lot of socializing with people. It's great for focus in doing either of those things. And as I said, the MtoQ has been helping my wife tremendously she feels (I do not take that). The downside to taking all of these is, of course, they are not cheap. We spend a lot on all of this stuff (we probably take about 25 or 30 different supplements regularly) . But since we can't travel at all with her health situation being what it is, we figure it's a wash between traveling expenses and supplement expenses. So that is one way my wife deals with fatigue.
Well actually @artscaping , we are positively disposed to the idea of medical marijuana. The drugs my wife will not do include all opioids, as well as things like duloxetine or steroids or pretty much anything that comes from a pharmaceutical company. We plan to definitely try marijuana as soon as it is legal in Tennessee. She has tried the illegal stuff enough to know it does effectively eliminate the pain for a few hours, so when the medical "no high" version becomes available it seems like that will be a useful tool for relief.
You asked about help with fatigue. One way that has helped my wife overcome fatigue is by taking a set of mitochondrial boosting supplements. As you may know, our energy is produced by the trillions of mitochondria that live in almost all cells of the body. They produce ATP, which is what we need to have energy. So anything we can do to make them healthier is a good thing. Here are the things she takes regularly: MitoQ, Niagen, Acetyl L Carnitine, L Carnosine, PQQ and NAC. The MitoQ is like a super Co Q10 because it crosses the blood-brain barrier and is much better absorbed. My wife is convinced it has helped as much as anything in fighting her ongoing energy issues and all of these combine to give her more energy to be able to endure pain and still function at a reasonable level. I would say of the 6 things I mentioned, the first 3 (MitoQ, Niagen and Acetyl L Carnitine) are the ones that she has noticed a benefit from the most and the last 3 (L Carnosine, PQQ and NAC) it's tough to tell. But in reading about them all, they all relate to boosting mitochondria. If anyone knows of any I did not mention I'd like to hear about them. I myself noticed a boost from taking Acetyl L Carnitine. When I was doing my regular hikes in the mornings I noticed a definite fall off in energy a couple years back when I was about 65. Very soon after starting the ALC I became more like my previous self who could march up and down hills with verve and joy! It was wonderful. So I really can attest to the benefits of that supplement. Niagen gives me the abilty to focus. My wife takes it every day but I do only on days when I have to do a lot of driving or when I will be doing a lot of socializing with people. It's great for focus in doing either of those things. And as I said, the MtoQ has been helping my wife tremendously she feels (I do not take that). The downside to taking all of these is, of course, they are not cheap. We spend a lot on all of this stuff (we probably take about 25 or 30 different supplements regularly) . But since we can't travel at all with her health situation being what it is, we figure it's a wash between traveling expenses and supplement expenses. So that is one way my wife deals with fatigue.
I take THC medical marijuana at night. It helps me to get to sleep and gives me some relief from my neuropathy. Thank you for the information about MtoQ. I never heard about that. I am paralyzed with a spinal cord stroke and have burning neuropathic pain 24/7. I need to try this.
I take THC medical marijuana at night. It helps me to get to sleep and gives me some relief from my neuropathy. Thank you for the information about MtoQ. I never heard about that. I am paralyzed with a spinal cord stroke and have burning neuropathic pain 24/7. I need to try this.
@darlingtondoll I am very sorry to hear that you are paralyzed AND deal with severe PN as well. My heart goes out to you as well as all of the sufferers of PN whose stories I have red about on this blog. Although my wife does not always have it 24/7 (sometimes it's less than the 24 but it's always the 7) the days she does get it all day is very debilitating for her. That is why the mitochondrial things have helped her so much. As I understand it from my online research, the MitoQ functions similar to CoQ10 in that when the mitochondria expel waste products (called ROS -reactive oxygen species) MitoQ helps to dispose of the waste which makes the mitochondria healthier. One of the problems with mitochondria, like anything, is that they can become sick and die and we have less of them as a result the older we get. All of the supplements I mentioned have a separate function in helping to keep mitochondria healthy and prolific.
.
I am glad you at least have medical marijuana to rely on. My wife wants legalization in our state (Tennessee) asap! Marijuana has been so misunderstood and mischaracterized for so long it's pathetic. The dumbest thing many people have believed and continue to believe is that it is a gateway drug. I had plenty of experience in the 1970s using it myself to understand that it is NOT a gateway drug. Smoking marijuana does not make you want to use cocaine or heroin, etc. The fact that people still refuse to try to understand it even now is SUCH a disservice to people like you and my wife. Best wishes to you!
@darlingtondoll I am very sorry to hear that you are paralyzed AND deal with severe PN as well. My heart goes out to you as well as all of the sufferers of PN whose stories I have red about on this blog. Although my wife does not always have it 24/7 (sometimes it's less than the 24 but it's always the 7) the days she does get it all day is very debilitating for her. That is why the mitochondrial things have helped her so much. As I understand it from my online research, the MitoQ functions similar to CoQ10 in that when the mitochondria expel waste products (called ROS -reactive oxygen species) MitoQ helps to dispose of the waste which makes the mitochondria healthier. One of the problems with mitochondria, like anything, is that they can become sick and die and we have less of them as a result the older we get. All of the supplements I mentioned have a separate function in helping to keep mitochondria healthy and prolific.
.
I am glad you at least have medical marijuana to rely on. My wife wants legalization in our state (Tennessee) asap! Marijuana has been so misunderstood and mischaracterized for so long it's pathetic. The dumbest thing many people have believed and continue to believe is that it is a gateway drug. I had plenty of experience in the 1970s using it myself to understand that it is NOT a gateway drug. Smoking marijuana does not make you want to use cocaine or heroin, etc. The fact that people still refuse to try to understand it even now is SUCH a disservice to people like you and my wife. Best wishes to you!
@jesfactsmon Thank you for the interesting info about the mitrochondria! I have not been taking any supplements since my B12 levels went crazy several months ago (1180 if I remember correctly) and my doctor suggested I stop taking B supplements. I went online and have found a supplement that combines some of the supplements you mention, so will give it a try.
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
@darlingtondoll I am very sorry to hear that you are paralyzed AND deal with severe PN as well. My heart goes out to you as well as all of the sufferers of PN whose stories I have red about on this blog. Although my wife does not always have it 24/7 (sometimes it's less than the 24 but it's always the 7) the days she does get it all day is very debilitating for her. That is why the mitochondrial things have helped her so much. As I understand it from my online research, the MitoQ functions similar to CoQ10 in that when the mitochondria expel waste products (called ROS -reactive oxygen species) MitoQ helps to dispose of the waste which makes the mitochondria healthier. One of the problems with mitochondria, like anything, is that they can become sick and die and we have less of them as a result the older we get. All of the supplements I mentioned have a separate function in helping to keep mitochondria healthy and prolific.
.
I am glad you at least have medical marijuana to rely on. My wife wants legalization in our state (Tennessee) asap! Marijuana has been so misunderstood and mischaracterized for so long it's pathetic. The dumbest thing many people have believed and continue to believe is that it is a gateway drug. I had plenty of experience in the 1970s using it myself to understand that it is NOT a gateway drug. Smoking marijuana does not make you want to use cocaine or heroin, etc. The fact that people still refuse to try to understand it even now is SUCH a disservice to people like you and my wife. Best wishes to you!
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
Have you tried other neuropathy meds? I've been through all the neuropathy meds that my pcp and neurologist knew, and I don't think my pain specialist has more than 1 or 2 meds left on his list, plus I had a spinal cord stimulator implant in June of 2017, which has made a big difference in my pain level.
My pn hasn't progressed as far as yours, and I'm truly sorry that you're in so much pain. The pain in my feet seems bad to me, but I feel like a weakling compared to how much you and many others suffer with. I have much more pain at night and when I put my feet up in the recliner. Having multiple health conditions can make diagnosis and treatment difficult for our doctors.
Lidocaine cream 5% numbs my feet enough to let me get to sleep, but it's certainly a temporary solution. Medicare turned down a refill of the prescription, so I found Uber Numb on Amazon for $16, instead of more than $150 for the prescription.
I have a blanket lifter on my bed so the sheets and blankets don't touch my feet, and I have a pillow for my feet. Little things like these can make a difference.
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
@margaretob - Have you spoken to your doctor about the charley horses?!? I just started taking Crestor and my doctor specifically warned me that extremely painful muscles was a potential serious side effect, and if it happened to stop taking the meds and make a medical appointment immediately. This side effect can happen at any time after you start taking the meds so does not necessarily show up when you first start taking it.
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@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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4 ReactionsWell actually @artscaping , we are positively disposed to the idea of medical marijuana. The drugs my wife will not do include all opioids, as well as things like duloxetine or steroids or pretty much anything that comes from a pharmaceutical company. We plan to definitely try marijuana as soon as it is legal in Tennessee. She has tried the illegal stuff enough to know it does effectively eliminate the pain for a few hours, so when the medical "no high" version becomes available it seems like that will be a useful tool for relief.
You asked about help with fatigue. One way that has helped my wife overcome fatigue is by taking a set of mitochondrial boosting supplements. As you may know, our energy is produced by the trillions of mitochondria that live in almost all cells of the body. They produce ATP, which is what we need to have energy. So anything we can do to make them healthier is a good thing. Here are the things she takes regularly: MitoQ, Niagen, Acetyl L Carnitine, L Carnosine, PQQ and NAC. The MitoQ is like a super Co Q10 because it crosses the blood-brain barrier and is much better absorbed. My wife is convinced it has helped as much as anything in fighting her ongoing energy issues and all of these combine to give her more energy to be able to endure pain and still function at a reasonable level. I would say of the 6 things I mentioned, the first 3 (MitoQ, Niagen and Acetyl L Carnitine) are the ones that she has noticed a benefit from the most and the last 3 (L Carnosine, PQQ and NAC) it's tough to tell. But in reading about them all, they all relate to boosting mitochondria. If anyone knows of any I did not mention I'd like to hear about them. I myself noticed a boost from taking Acetyl L Carnitine. When I was doing my regular hikes in the mornings I noticed a definite fall off in energy a couple years back when I was about 65. Very soon after starting the ALC I became more like my previous self who could march up and down hills with verve and joy! It was wonderful. So I really can attest to the benefits of that supplement. Niagen gives me the abilty to focus. My wife takes it every day but I do only on days when I have to do a lot of driving or when I will be doing a lot of socializing with people. It's great for focus in doing either of those things. And as I said, the MtoQ has been helping my wife tremendously she feels (I do not take that). The downside to taking all of these is, of course, they are not cheap. We spend a lot on all of this stuff (we probably take about 25 or 30 different supplements regularly) . But since we can't travel at all with her health situation being what it is, we figure it's a wash between traveling expenses and supplement expenses. So that is one way my wife deals with fatigue.
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2 ReactionsI take THC medical marijuana at night. It helps me to get to sleep and gives me some relief from my neuropathy. Thank you for the information about MtoQ. I never heard about that. I am paralyzed with a spinal cord stroke and have burning neuropathic pain 24/7. I need to try this.
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2 ReactionsShould You Sign a Pain Treatment Agreement? https://www.webmd.com/pain-management/pain-management-pain-treatment-agreement
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1 Reaction@darlingtondoll I am very sorry to hear that you are paralyzed AND deal with severe PN as well. My heart goes out to you as well as all of the sufferers of PN whose stories I have red about on this blog. Although my wife does not always have it 24/7 (sometimes it's less than the 24 but it's always the 7) the days she does get it all day is very debilitating for her. That is why the mitochondrial things have helped her so much. As I understand it from my online research, the MitoQ functions similar to CoQ10 in that when the mitochondria expel waste products (called ROS -reactive oxygen species) MitoQ helps to dispose of the waste which makes the mitochondria healthier. One of the problems with mitochondria, like anything, is that they can become sick and die and we have less of them as a result the older we get. All of the supplements I mentioned have a separate function in helping to keep mitochondria healthy and prolific.
.
I am glad you at least have medical marijuana to rely on. My wife wants legalization in our state (Tennessee) asap! Marijuana has been so misunderstood and mischaracterized for so long it's pathetic. The dumbest thing many people have believed and continue to believe is that it is a gateway drug. I had plenty of experience in the 1970s using it myself to understand that it is NOT a gateway drug. Smoking marijuana does not make you want to use cocaine or heroin, etc. The fact that people still refuse to try to understand it even now is SUCH a disservice to people like you and my wife. Best wishes to you!
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Helpful -
Hug
3 Reactions@jesfactsmon Thank you for the interesting info about the mitrochondria! I have not been taking any supplements since my B12 levels went crazy several months ago (1180 if I remember correctly) and my doctor suggested I stop taking B supplements. I went online and have found a supplement that combines some of the supplements you mention, so will give it a try.
-
Like -
Helpful -
Hug
1 ReactionYES, 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
I can even get the flowery tops and make cookies and brownies, etc. I wish that Florida would legalize it for everyone.
@margaretob
Have you tried other neuropathy meds? I've been through all the neuropathy meds that my pcp and neurologist knew, and I don't think my pain specialist has more than 1 or 2 meds left on his list, plus I had a spinal cord stimulator implant in June of 2017, which has made a big difference in my pain level.
My pn hasn't progressed as far as yours, and I'm truly sorry that you're in so much pain. The pain in my feet seems bad to me, but I feel like a weakling compared to how much you and many others suffer with. I have much more pain at night and when I put my feet up in the recliner. Having multiple health conditions can make diagnosis and treatment difficult for our doctors.
Lidocaine cream 5% numbs my feet enough to let me get to sleep, but it's certainly a temporary solution. Medicare turned down a refill of the prescription, so I found Uber Numb on Amazon for $16, instead of more than $150 for the prescription.
I have a blanket lifter on my bed so the sheets and blankets don't touch my feet, and I have a pillow for my feet. Little things like these can make a difference.
-
Like -
Helpful -
Hug
2 Reactions@margaretob - Have you spoken to your doctor about the charley horses?!? I just started taking Crestor and my doctor specifically warned me that extremely painful muscles was a potential serious side effect, and if it happened to stop taking the meds and make a medical appointment immediately. This side effect can happen at any time after you start taking the meds so does not necessarily show up when you first start taking it.
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Like -
Helpful -
Hug
2 Reactions