I have had neuropathy for many years & the discomfort continues to get worse but comes in waves. I take 350mg of Lyrica daily. Walking for any short distance is difficult because of lower back pain caused by the stiffness of my feet, but I can ride my road bike 20 miles or more without much discomfort. My feet are numb most of the time with minimal pain but I do sometimes get pains & cramps up my calves.
For relief I take a cramp med (OTC) that dissolves under the tongueI & I do some medical cannabis tinctures with CBD & THC for pain - a CBD only tincture for relaxation plus occasional THC gummies also for relaxing & sleep. None of this is a cure but it certainly helps me deal with it all, without side effects.
Just have to applaud your efforts @solobeee. You have first of all accepted the fact that as of right now there is no cure for neuropathy of any kind. I read that there are three companies working n the development of a faster nerve healing approach.
The best we can all do is find opportunities to mitigate the impact of pain and decreasing capabilities. What are you doing for your numb feet? I turned my feet over to my MFR therapist with the note that I had to be a safe driver. Numb feet aren't helpful.
Regarding gabapentin. My neurologist started with gabapentin and my body only tolerated it at night so I went up to 1200 mg. Then I found other options that worked better without the "fuzzies". And so with my clinician's approval, I have tapered off and reduced the gabapentin to 600 mg and replaced it with another 30 mg of Duloxetine in the morning and a bigger dropper of MM at bedtime.
I have been using MM for at least 7 years......and it now is responsible for delivering a reasonably pain-reduced body for activities of daily living. I do not expect to be pain-free....just want to face levels that can be tolerated.
Do you mix your own tinctures? I haven't done gummies in a long time. When do you use those? Please stay in touch and let us know how things are going for you.
I have had neuropathy for many years & the discomfort continues to get worse but comes in waves. I take 350mg of Lyrica daily. Walking for any short distance is difficult because of lower back pain caused by the stiffness of my feet, but I can ride my road bike 20 miles or more without much discomfort. My feet are numb most of the time with minimal pain but I do sometimes get pains & cramps up my calves.
For relief I take a cramp med (OTC) that dissolves under the tongueI & I do some medical cannabis tinctures with CBD & THC for pain - a CBD only tincture for relaxation plus occasional THC gummies also for relaxing & sleep. None of this is a cure but it certainly helps me deal with it all, without side effects.
@solobeee, @jrayk,@johnbishop, @mashm888 etc Hello, fellow feet/leg/hands, pain/numbness folks.....Interesting conversation you've got going. @solobeee , are you seriously riding your bicycle 20 miles?????? How often? Flatland or hills or mountains??????
I can't do anything bike due balance, feet on pedals is a killer, I'd fall and kill myself for sure if outside rather than gym, & the upward/downward motion and damage to my hips. After a few minutes of that motion, I'd be in bed in agony for days!
However, I still enjoy very much and can do the recumbent stepper. That is comfortable and gives me whole body and cardio, good movement for me. The best, of course, since I also have other diagnoses - fibromyalgia, arthritis like crazy and very painful, herniated lumbar and cervical discs, sarcoid and other stuff...Requip for RLS, severe apnea so I use a b-pap for sleep. And, Lyrica for firbro pain and anxiety, LOVE IT, and Robaxin for muscle relaxant for cramping which can be extreme. 1:1 MMJ tincture is a winner for anxiety, pain, etc.at night.
This combination seems to be what works for me now. I also am extremely careful re shoes.....John....and use lotions, sometimes MMJ lotion at night on feet/legs/hands/wrists. It's costly so I limit the MMJ lotion, but some lotion is necessary. Another member suggested Bed and Bath Lavendar, or lavendar and 2 other healing spices - John, do you remember what they were? Frankinsence and mhyrr?
Anyway, haven't tried them yet, but soon....will report response.
Walking is good for me, but it is best usually when I go to the Mayo Clinic in Fl and walk the corridors between the 3 main buildings. It's relaxing, carpeted, safe, comfy, cool in heat summer, lots of human beings around safe from covid but with people......wonderful....and lovely paintings, etc. I hit the gift shop while there, too.....
Hope some of this can work for you and incorporate it into your schedule. It's taken a couple years to get this cocktail together and find what' best for this pain. Most of all, getting to learn from these Connect warriors, @johnbishop, @artscaping, @sueinmn, and so many others.....put it all together, add the docs at Mayo, common sense, moderation, moderation, moderation and focus on cleansing breathing and healing....All together, God and I are getting these legs and feet and whole body in a better place.
Blessings, folks. Hope your day is filled with spring, good things and new friends on these groups. elizabeth
I too have a problem with pins and needles from mid-exercise onwards and subsequently. Hot weather makes it worse. I have hot foot syndrome so I can see why exercising in shoes would be contributing to pins and needles as feet get hot. Following exercise I ice the bottom of my feet for 30-40 minutes and that helps settle things down. My doc wants me to get screened for early stages of plantar fasciatis as that could be a contributing factor also.
Thank you all for your responses. I am a cyclist and usually when i ride after about 10 minutes the pins and needles start and they usually last for a good 10-20 minutes. The feeling subsides after that period but during time it is almost enough discomfort to discourage any activity. The same thing happens when I start to sweat in the gym or doing yard work here in Florida. I know it will not feel good. i know it sounds strange but would think most of you are familiar with uncommon symptoms. Just curious if others have the same sensations and what a remedy might be(?).
I have the exact same symptoms. What I noticed is that geographical location also makes a difference. I had less of this problem in Dallas Texas, but more of it in south Florida and now in Pennsylvania.
I have the exact same symptoms. What I noticed is that geographical location also makes a difference. I had less of this problem in Dallas Texas, but more of it in south Florida and now in Pennsylvania.
Hello @dremindeniz, Welcome to Mayo Clinic Connect. Thanks for sharing your experience with your symptoms. I'm wondering if others have noticed that where you live makes a difference and if it's due to temperature, humidity or other factors. Have you been diagnosed with neuropathy?
I have the exact same symptoms. What I noticed is that geographical location also makes a difference. I had less of this problem in Dallas Texas, but more of it in south Florida and now in Pennsylvania.
Good morning @dremindeniz. Welcome to Connect! It is pretty wonderful to be in touch with folks from different places with the same symptoms. The other location issue is altitude. I lived for 20 years at 6,000 ft. And I was a member of a walking group that traveled all over on Inn to Inn adventures. According to my primary and only medical clinician in the village, living at altitude is very good for your heart and cardiovascular system.
Tourists used to come into my gallery complaining about being tired and out of breath. I would tell them to give it a few days before trying to climb up "Tahquitz" (11,000 ft).
And for those with a TKR or two.....remember it is o.k. to climb up, it is not o.k. to climb down.
And here is another issue. Barometric pressure. So anything over 30 is great and keeps your pain at bay a bit.
Unfortunately, there is another issue and that is lack of moisture. My ophthalmologist told me that the only thing that would help my dry eyes syndrome would be a move to a rainforest. So here I am in MN and my eyes are much, much, better.
Yes, where we live and how we live are very important elements for our health.
May you be free of suffering and the causes of suffering.
Chris
Good morning @dremindeniz. Welcome to Connect! It is pretty wonderful to be in touch with folks from different places with the same symptoms. The other location issue is altitude. I lived for 20 years at 6,000 ft. And I was a member of a walking group that traveled all over on Inn to Inn adventures. According to my primary and only medical clinician in the village, living at altitude is very good for your heart and cardiovascular system.
Tourists used to come into my gallery complaining about being tired and out of breath. I would tell them to give it a few days before trying to climb up "Tahquitz" (11,000 ft).
And for those with a TKR or two.....remember it is o.k. to climb up, it is not o.k. to climb down.
And here is another issue. Barometric pressure. So anything over 30 is great and keeps your pain at bay a bit.
Unfortunately, there is another issue and that is lack of moisture. My ophthalmologist told me that the only thing that would help my dry eyes syndrome would be a move to a rainforest. So here I am in MN and my eyes are much, much, better.
Yes, where we live and how we live are very important elements for our health.
May you be free of suffering and the causes of suffering.
Chris
There are many issues in this thread that I’d like to comment on but don’t be freaked out by my story because things are better now than when I was first diagnosed with SFN in 2008.
My neurologist did labs and found my IGG was 2100 & normal should be below 1600.
He was concerned that it could be multiple myeloma, which could cause neuropathy. Well, he was right! This is something that should be checked by all reading this when looking for a possible cause of your PN.
What happened next? I followed up with an oncologist & was monitored every few months as the disease progressed. I never felt any additional symptoms of the disease. In 2019 my PN was always active & annoying but I developed serious back pain & additional pains down my legs. Turned out that I needed fusion of my lumbar vertebrae L2,3,4 & 5. However, this surgery was not caused by the multiple myeloma. In September 2020 my IGG went to 7500 and that was high enough to start treatment. I had no other symptoms but my PN was very bad...pain, numbness & stiffness. I was not able to do much exercise but went to PT for some relief. I began treatment with immunotherapy & chemo.
The chemo really increased my PN to a point that I couldn’t take it so it was stopped after 6 months. My labs however, were all improving & my IGG went down to 1500 which was amazing. Now I just get immunotherapy once a month & I have PT for balance & strength training. I started riding a stationary bike & started riding my road bike again. I’m now taking 22 mile rides here in Miami, Florida & hope to get up to 30 miles soon again.
So, how’s my PN? Tolerable with the help of Lyrica, which I’m trying to reduce, & medical marijuana- tincture, topical, gummy’s- THC & CBD. Well, I’m good now & hope to stay well
& glad that I found out about my IGG 13 years ago. Have your IGG checked to rule out MM.
There are many issues in this thread that I’d like to comment on but don’t be freaked out by my story because things are better now than when I was first diagnosed with SFN in 2008.
My neurologist did labs and found my IGG was 2100 & normal should be below 1600.
He was concerned that it could be multiple myeloma, which could cause neuropathy. Well, he was right! This is something that should be checked by all reading this when looking for a possible cause of your PN.
What happened next? I followed up with an oncologist & was monitored every few months as the disease progressed. I never felt any additional symptoms of the disease. In 2019 my PN was always active & annoying but I developed serious back pain & additional pains down my legs. Turned out that I needed fusion of my lumbar vertebrae L2,3,4 & 5. However, this surgery was not caused by the multiple myeloma. In September 2020 my IGG went to 7500 and that was high enough to start treatment. I had no other symptoms but my PN was very bad...pain, numbness & stiffness. I was not able to do much exercise but went to PT for some relief. I began treatment with immunotherapy & chemo.
The chemo really increased my PN to a point that I couldn’t take it so it was stopped after 6 months. My labs however, were all improving & my IGG went down to 1500 which was amazing. Now I just get immunotherapy once a month & I have PT for balance & strength training. I started riding a stationary bike & started riding my road bike again. I’m now taking 22 mile rides here in Miami, Florida & hope to get up to 30 miles soon again.
So, how’s my PN? Tolerable with the help of Lyrica, which I’m trying to reduce, & medical marijuana- tincture, topical, gummy’s- THC & CBD. Well, I’m good now & hope to stay well
& glad that I found out about my IGG 13 years ago. Have your IGG checked to rule out MM.
Hi there, I am not freaking out yet! I am concerned that you have been through a lot. And I am cheering you on with only 8 more miles to go.
I also want to support your description of PN at this point. Using your routine and regime of Medical cannabis and Lyrica, you are able to deal with tolerable pain and other sensations. I have tinctures and topicals that I use to control pain and fall asleep at night. Then I have daytime dosages of CBD & THC.
May I ask why you are tapering off Lyrica? And what are you replacing it with?
May you be safe and protected from inner and outer harm.
Chris
Yes, my husband experiences the same thing. He works out 6-7 times a week. Very active. Right before he breaks a sweat his whole body experiences pins and needles that are very painful. His face and arms and whole body break out in white hives. The pins and needles stop as soon as a sweat breaks. We use the VA medical and they have no idea what is wrong with him. I’m desperate for a solution for him. He’s been on antihistamines which only make him sleepy. I just bought zendocrine from doterra thinking maybe it’s his body trying to rid the toxins it has accumulated... hasn’t worked. We eat clean and have gone vegan since he developed this. He’s had this the last three years. Tried all natural soaps etc... nothing.. We’re at a complete loss and feel hopeless..
Hello, were you ever able to figure this out? I also have the symptoms of needles on various places, especially head and face when I work out. Common denominator we have is I also have Veteran Affairs Health care, and they have no clue either. I also experienced hard time taking full breath, chest pains. Does he experience any other symptoms as well? Thanks, and best of luck tracking down the cause.
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Just have to applaud your efforts @solobeee. You have first of all accepted the fact that as of right now there is no cure for neuropathy of any kind. I read that there are three companies working n the development of a faster nerve healing approach.
The best we can all do is find opportunities to mitigate the impact of pain and decreasing capabilities. What are you doing for your numb feet? I turned my feet over to my MFR therapist with the note that I had to be a safe driver. Numb feet aren't helpful.
Regarding gabapentin. My neurologist started with gabapentin and my body only tolerated it at night so I went up to 1200 mg. Then I found other options that worked better without the "fuzzies". And so with my clinician's approval, I have tapered off and reduced the gabapentin to 600 mg and replaced it with another 30 mg of Duloxetine in the morning and a bigger dropper of MM at bedtime.
I have been using MM for at least 7 years......and it now is responsible for delivering a reasonably pain-reduced body for activities of daily living. I do not expect to be pain-free....just want to face levels that can be tolerated.
Do you mix your own tinctures? I haven't done gummies in a long time. When do you use those? Please stay in touch and let us know how things are going for you.
May you be content and at ease.
Chris
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2 Reactions@solobeee, @jrayk,@johnbishop, @mashm888 etc Hello, fellow feet/leg/hands, pain/numbness folks.....Interesting conversation you've got going. @solobeee , are you seriously riding your bicycle 20 miles?????? How often? Flatland or hills or mountains??????
I can't do anything bike due balance, feet on pedals is a killer, I'd fall and kill myself for sure if outside rather than gym, & the upward/downward motion and damage to my hips. After a few minutes of that motion, I'd be in bed in agony for days!
However, I still enjoy very much and can do the recumbent stepper. That is comfortable and gives me whole body and cardio, good movement for me. The best, of course, since I also have other diagnoses - fibromyalgia, arthritis like crazy and very painful, herniated lumbar and cervical discs, sarcoid and other stuff...Requip for RLS, severe apnea so I use a b-pap for sleep. And, Lyrica for firbro pain and anxiety, LOVE IT, and Robaxin for muscle relaxant for cramping which can be extreme. 1:1 MMJ tincture is a winner for anxiety, pain, etc.at night.
This combination seems to be what works for me now. I also am extremely careful re shoes.....John....and use lotions, sometimes MMJ lotion at night on feet/legs/hands/wrists. It's costly so I limit the MMJ lotion, but some lotion is necessary. Another member suggested Bed and Bath Lavendar, or lavendar and 2 other healing spices - John, do you remember what they were? Frankinsence and mhyrr?
Anyway, haven't tried them yet, but soon....will report response.
Walking is good for me, but it is best usually when I go to the Mayo Clinic in Fl and walk the corridors between the 3 main buildings. It's relaxing, carpeted, safe, comfy, cool in heat summer, lots of human beings around safe from covid but with people......wonderful....and lovely paintings, etc. I hit the gift shop while there, too.....
Hope some of this can work for you and incorporate it into your schedule. It's taken a couple years to get this cocktail together and find what' best for this pain. Most of all, getting to learn from these Connect warriors, @johnbishop, @artscaping, @sueinmn, and so many others.....put it all together, add the docs at Mayo, common sense, moderation, moderation, moderation and focus on cleansing breathing and healing....All together, God and I are getting these legs and feet and whole body in a better place.
Blessings, folks. Hope your day is filled with spring, good things and new friends on these groups. elizabeth
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Helpful -
Hug
2 ReactionsAny update on the conditions? Did anyone find any solutions?
I too have a problem with pins and needles from mid-exercise onwards and subsequently. Hot weather makes it worse. I have hot foot syndrome so I can see why exercising in shoes would be contributing to pins and needles as feet get hot. Following exercise I ice the bottom of my feet for 30-40 minutes and that helps settle things down. My doc wants me to get screened for early stages of plantar fasciatis as that could be a contributing factor also.
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Like -
Helpful -
Hug
1 ReactionI have the exact same symptoms. What I noticed is that geographical location also makes a difference. I had less of this problem in Dallas Texas, but more of it in south Florida and now in Pennsylvania.
Hello @dremindeniz, Welcome to Mayo Clinic Connect. Thanks for sharing your experience with your symptoms. I'm wondering if others have noticed that where you live makes a difference and if it's due to temperature, humidity or other factors. Have you been diagnosed with neuropathy?
-
Like -
Helpful -
Hug
4 ReactionsGood morning @dremindeniz. Welcome to Connect! It is pretty wonderful to be in touch with folks from different places with the same symptoms. The other location issue is altitude. I lived for 20 years at 6,000 ft. And I was a member of a walking group that traveled all over on Inn to Inn adventures. According to my primary and only medical clinician in the village, living at altitude is very good for your heart and cardiovascular system.
Tourists used to come into my gallery complaining about being tired and out of breath. I would tell them to give it a few days before trying to climb up "Tahquitz" (11,000 ft).
And for those with a TKR or two.....remember it is o.k. to climb up, it is not o.k. to climb down.
And here is another issue. Barometric pressure. So anything over 30 is great and keeps your pain at bay a bit.
Unfortunately, there is another issue and that is lack of moisture. My ophthalmologist told me that the only thing that would help my dry eyes syndrome would be a move to a rainforest. So here I am in MN and my eyes are much, much, better.
Yes, where we live and how we live are very important elements for our health.
May you be free of suffering and the causes of suffering.
Chris
-
Like -
Helpful -
Hug
4 ReactionsThere are many issues in this thread that I’d like to comment on but don’t be freaked out by my story because things are better now than when I was first diagnosed with SFN in 2008.
My neurologist did labs and found my IGG was 2100 & normal should be below 1600.
He was concerned that it could be multiple myeloma, which could cause neuropathy. Well, he was right! This is something that should be checked by all reading this when looking for a possible cause of your PN.
What happened next? I followed up with an oncologist & was monitored every few months as the disease progressed. I never felt any additional symptoms of the disease. In 2019 my PN was always active & annoying but I developed serious back pain & additional pains down my legs. Turned out that I needed fusion of my lumbar vertebrae L2,3,4 & 5. However, this surgery was not caused by the multiple myeloma. In September 2020 my IGG went to 7500 and that was high enough to start treatment. I had no other symptoms but my PN was very bad...pain, numbness & stiffness. I was not able to do much exercise but went to PT for some relief. I began treatment with immunotherapy & chemo.
The chemo really increased my PN to a point that I couldn’t take it so it was stopped after 6 months. My labs however, were all improving & my IGG went down to 1500 which was amazing. Now I just get immunotherapy once a month & I have PT for balance & strength training. I started riding a stationary bike & started riding my road bike again. I’m now taking 22 mile rides here in Miami, Florida & hope to get up to 30 miles soon again.
So, how’s my PN? Tolerable with the help of Lyrica, which I’m trying to reduce, & medical marijuana- tincture, topical, gummy’s- THC & CBD. Well, I’m good now & hope to stay well
& glad that I found out about my IGG 13 years ago. Have your IGG checked to rule out MM.
-
Like -
Helpful -
Hug
3 ReactionsHi there, I am not freaking out yet! I am concerned that you have been through a lot. And I am cheering you on with only 8 more miles to go.
I also want to support your description of PN at this point. Using your routine and regime of Medical cannabis and Lyrica, you are able to deal with tolerable pain and other sensations. I have tinctures and topicals that I use to control pain and fall asleep at night. Then I have daytime dosages of CBD & THC.
May I ask why you are tapering off Lyrica? And what are you replacing it with?
May you be safe and protected from inner and outer harm.
Chris
Hello, were you ever able to figure this out? I also have the symptoms of needles on various places, especially head and face when I work out. Common denominator we have is I also have Veteran Affairs Health care, and they have no clue either. I also experienced hard time taking full breath, chest pains. Does he experience any other symptoms as well? Thanks, and best of luck tracking down the cause.