Also. I’ve been using CBD oil and so far it’s not helping. Does it take time to take effect or is there immediate relief. It’s a high-quality expensive CBD oil it was purchased at a Compound Pharmacy. With a very good reputation How many milligrams did you have to take in order to get relief
Make sure that it is CBD isolate as that is 99.9% pure CBD. There is much confusion and you may be taking a full spectrum with only a small amount of CBD.
posted by nkhan@sarah_leanne
Greetings.
My name is Nazir Khan. I am working for the UN as an international civil servant and am currently based in Harare, Zimbabwe.
In August 2017, I began to experience gradual onset bilateral symmetrical discomfort of my feet, which could be described as a heavy feeling. Gradually this progressed to a burning sensation along with numbness and pins and needles. My feet are very sensitive to touch. Since then the symptoms have been constant, and they have affected my ability to mobilize freely. I am no longer able to exercise. It is now 18 months later and my symptoms have not resolved. The symptoms of burning/tingling pain and altered sensation are rapidly progressing.
Since the onset of my symptoms, I have seen a large number of doctors in countries all over the world and have had a very large number of tests performed. My most recent assessment was done by Mayo Clinic Rochester.
There has been some conflict in opinion. I was initially told that my symptoms were possibly the result of spinal stenosis caused by degenerative disc disease. To fix the problem, I initially considered stem cell treatment, but ultimately a decision was made to undergo a course of two rounds of spinal platelet lysate injections in a clinic in Colorado.
However, according to the aforementioned more recent assessment in Mayo Clinic, my diagnosis appears to be a small fibre neuropathy.
I have not tried any medication yet but my symptoms are deteriorating rapidly. I am finding it increasingly difficult to walk because of the constant burning sensation, severe numbness and pain.
I am wondering whether my condition can benefit from the pain cream you mentioned in your post on Mayo Clinic Connect and if so how can I get it in Zimbabwe.
posted by nkhan@sarah_leanne
Greetings.
My name is Nazir Khan. I am working for the UN as an international civil servant and am currently based in Harare, Zimbabwe.
In August 2017, I began to experience gradual onset bilateral symmetrical discomfort of my feet, which could be described as a heavy feeling. Gradually this progressed to a burning sensation along with numbness and pins and needles. My feet are very sensitive to touch. Since then the symptoms have been constant, and they have affected my ability to mobilize freely. I am no longer able to exercise. It is now 18 months later and my symptoms have not resolved. The symptoms of burning/tingling pain and altered sensation are rapidly progressing.
Since the onset of my symptoms, I have seen a large number of doctors in countries all over the world and have had a very large number of tests performed. My most recent assessment was done by Mayo Clinic Rochester.
There has been some conflict in opinion. I was initially told that my symptoms were possibly the result of spinal stenosis caused by degenerative disc disease. To fix the problem, I initially considered stem cell treatment, but ultimately a decision was made to undergo a course of two rounds of spinal platelet lysate injections in a clinic in Colorado.
However, according to the aforementioned more recent assessment in Mayo Clinic, my diagnosis appears to be a small fibre neuropathy.
I have not tried any medication yet but my symptoms are deteriorating rapidly. I am finding it increasingly difficult to walk because of the constant burning sensation, severe numbness and pain.
I am wondering whether my condition can benefit from the pain cream you mentioned in your post on Mayo Clinic Connect and if so how can I get it in Zimbabwe.
Hello Nazir @nkhan1958, I see you are a new member this year. Welcome to Connect. I was also diagnosed with small fiber peripheral neuropathy at Rochester Mayo Clinic. It is in both legs, mostly in the ankles and feet. I have no pain with mine. I only have numbness and some tingling. It's been with me for well over 20+ years but I never bothered to have it diagnosed because my primary care doctor told me it was probably nerve damage and when I asked them how they could tell, he told me they could run some tests. My next question was if they find it's nerve damage what can they do to fix it. I was told nothing would fix it so I stopped asking until it seemed to be getting worse a few years ago which is when I had some tests including an EMG and saw a neurologist at Mayo Clinic. He told me if there was pain he could give me medications to address the pain but there was nothing that can help with the numbness. That started my search and was how I found Connect. You can read my complete story here if you want: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
I am tagging other members who have posted about CBD and other treatment methods that may be helpful for you. @artscaping and @jenniferhunter would you have any suggestions for Nazir?
I have similar symptoms: my skin feels numb while the inside of my feet are burning like they are on fire -- all the time except a few hours twice a day when the meds are working ... I don't yet have it down to a fine science what to take when to stop the burning and stay stopped. Perhaps that is not possible. So far, my neurologist thinks Neuropathy, and Restless Leg Syndrome (this is on top of several other conditions I have that cause pain in feet and legs: bunions, arthritis, missing cartilage in feet. When the pain is very bad I figure out which 'ism' is causing it and take appropriate medicine. If I've already take medicine for one, I can't take more medicine until the first is wearing off ... so, I'm between a rock and a hard place with this condition. Then I just have to suffer for awhile -- it's wearing me out. Peggy
I have similar symptoms: my skin feels numb while the inside of my feet are burning like they are on fire -- all the time except a few hours twice a day when the meds are working ... I don't yet have it down to a fine science what to take when to stop the burning and stay stopped. Perhaps that is not possible. So far, my neurologist thinks Neuropathy, and Restless Leg Syndrome (this is on top of several other conditions I have that cause pain in feet and legs: bunions, arthritis, missing cartilage in feet. When the pain is very bad I figure out which 'ism' is causing it and take appropriate medicine. If I've already take medicine for one, I can't take more medicine until the first is wearing off ... so, I'm between a rock and a hard place with this condition. Then I just have to suffer for awhile -- it's wearing me out. Peggy
Hi @pfbacon, have you talked with your neurologist to see if there may be alternative drugs/medications to the ones you are using that may offer longer relief for the pain? I only have the numbness but found something that helps for me - over the counter supplements, vitamins and minerals. Most of the people in the group where I found the supplements had the pain and numbness and were able to taper off of their medications and only use the supplements to get rid of their pain symptoms. You can read my story here if you want more information - https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
@brendareid I don’t know if you are experiencing pain from plantar fasciitis but I wanted to tell you about my experience, I was having horrible unbearable pain because of plantar fasciitis. I started walking with the help of a Cain then it was so bad I was going to therapy and got custom made orthopedic shoes and orthotics sleeping with a stretcher then I needed crutches after I was getting steroid shots 1-2 a week because of the pain, the last thing I could not walk anymore soon I was in a wheelchair the doctor had given me a date for surgery then someone told me about the good feet store, I went, I had tried everything so what was one more thing, right? The inserts are very thin and I bought them I was really desperate! Within two weeks I was walking again, and within 3 weeks I had no pain. I have been wearing them for 7 years and no pain anymore. It sounds like a miracle but it really works. They are expensive but worth it. I never had the surgery and I really did not think it would work but just give it a chance. There’s a lot of insoles that say they help with PF but I had had only the same pair for the 7 years and they are still good. Maybe it sounds too good to be true but I can say they do work.
@clahar and @brendareid - I have used orthotics for plantar fascitis for 25 years or more! In the beginning, like you, I could hardly walk, but was amazed at the difference I felt after using the orthotics (when I started it was in the days before the Good Feet Store!!!). Anyway - they are worth every penny you spend on them!!!! barb
@gfisher100 Good morning. I have been using some version of topical ointment with CBD oil for several years. Some work better than others. The only type that is very messy is anything with coconut oil. I am experimenting right now with a 3:1 THC to CBD. It is working very well on hands, wrists, and arms. I also use it on my Myofascial knee problem. I was doubtful at first because of the high concentration of THC. My patient counselor said that it has been delivering good results. Any of the medical marijuana products work better than the lidocaine compounds, for me.
I have just found this discussion board. I recently started using CBD oil, but it is for sublingual use. I have 2 oils. One is 100%, or almost, CBD with no THC. The other is 1:1 CBD to THC, sublingual. I've had some unpleasant experiences when I added the 1:1 drops. Do you think I could try mixing it with a carrier oil for topical use, starting in tiny quantities? I have a syringe with measurements marked from 0.05 in half millilitres up to 1.0 ml so i can measure very carefully. I wonder if topical use is more predictable than oral.
posted by nkhan@sarah_leanne
Greetings.
My name is Nazir Khan. I am working for the UN as an international civil servant and am currently based in Harare, Zimbabwe.
In August 2017, I began to experience gradual onset bilateral symmetrical discomfort of my feet, which could be described as a heavy feeling. Gradually this progressed to a burning sensation along with numbness and pins and needles. My feet are very sensitive to touch. Since then the symptoms have been constant, and they have affected my ability to mobilize freely. I am no longer able to exercise. It is now 18 months later and my symptoms have not resolved. The symptoms of burning/tingling pain and altered sensation are rapidly progressing.
Since the onset of my symptoms, I have seen a large number of doctors in countries all over the world and have had a very large number of tests performed. My most recent assessment was done by Mayo Clinic Rochester.
There has been some conflict in opinion. I was initially told that my symptoms were possibly the result of spinal stenosis caused by degenerative disc disease. To fix the problem, I initially considered stem cell treatment, but ultimately a decision was made to undergo a course of two rounds of spinal platelet lysate injections in a clinic in Colorado.
However, according to the aforementioned more recent assessment in Mayo Clinic, my diagnosis appears to be a small fibre neuropathy.
I have not tried any medication yet but my symptoms are deteriorating rapidly. I am finding it increasingly difficult to walk because of the constant burning sensation, severe numbness and pain.
I am wondering whether my condition can benefit from the pain cream you mentioned in your post on Mayo Clinic Connect and if so how can I get it in Zimbabwe.
@nkhan1958, @johnbishop, Good evening Nazir Kahn and welcome to our wonderful world of sharing experiences and supporting each other. I am very impressed with the care provided by Mayo Clinic Rochester and therefore I can only assume that your diagnosis of small fiber neuropathy was made after you had a skin test to measure the density of the small fibers in a small sample from your leg. If so, then we have the same condition, one in which our small nerves are starting to struggle to keep up the work they do for us. As I understand it, when that happens and they are unable to "communicate" or do their job well, the only thing they know how to do is send back pain signals. Since my diagnosis, my journey into the world of chronic pain has been rapid and intense. At this point, I am focused on controlling the level of pain and discomfort so that I may live my life without constant discomfort. Here is what I have found to be helpful, expressed in terms of my daily regimen. 1. Sleep in if you can and enjoy the morning's moments without pain.
2. Take a hot shower hitting all those suspect areas....hands, feet, and other muscles. 3. Turn on some beautiful music and do 20 minutes of gentle yoga stretches and strength building exercises followed by 10-15 minutes of meditation focusing on relaxation and awareness. 4. Ease into your day without a focus on productivity or anxiety-producing efforts. As I learned, anxiety produces pain which produces more anxiety and then more pain. Depending on where you are in the development of SFN, you may want to add medical marijuana to your coffee. A 2-1 level works for me the entire morning. (I can explain more if you choose.) . 5. Give your body permission to rest. If others are around, simply say, "My body needs to rest now." 20 minutes and you will feel stronger and have less anxiety. 6. Evening time, depending on how much activity you had during the day, should be a chance to prepare for sleeping. I again use my form of pain control. 7. After talking with your heath professionals, you may want to use a couple of medications or their equivalent, gabapentin, and nortriptyline. I take them only at night about one hour before bedtime. And finally, if the tingling in your hands and/or feet is intense, try getting a lidocaine cream compounded for you by a pharmacist. It is topical and yet it lasts just long enough for you to drift off into what should be good healing sleep. Don't give up......you can find the quality of life that you deserve. Best wishes, may you have pain free moments, hours, and days to enjoy. Chris
I have been using it since April 2017. It seems to work a little, but it really it helping my arthritic knee! I am in Indiana and I order it online from Kentucky. Super fast shipping - two days for me. Google the company, Go Green Hemp.
I order the 500mg in the bottle and peppermint is our flavor. The cinnamon flavor is disgusting. I've used the balm, too, but can't see where it works.
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Make sure that it is CBD isolate as that is 99.9% pure CBD. There is much confusion and you may be taking a full spectrum with only a small amount of CBD.
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This post has been removed. It was not in accordance with the Terms of Use and Community Guidelines.
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1 Reactionposted by nkhan@sarah_leanne
Greetings.
My name is Nazir Khan. I am working for the UN as an international civil servant and am currently based in Harare, Zimbabwe.
In August 2017, I began to experience gradual onset bilateral symmetrical discomfort of my feet, which could be described as a heavy feeling. Gradually this progressed to a burning sensation along with numbness and pins and needles. My feet are very sensitive to touch. Since then the symptoms have been constant, and they have affected my ability to mobilize freely. I am no longer able to exercise. It is now 18 months later and my symptoms have not resolved. The symptoms of burning/tingling pain and altered sensation are rapidly progressing.
Since the onset of my symptoms, I have seen a large number of doctors in countries all over the world and have had a very large number of tests performed. My most recent assessment was done by Mayo Clinic Rochester.
There has been some conflict in opinion. I was initially told that my symptoms were possibly the result of spinal stenosis caused by degenerative disc disease. To fix the problem, I initially considered stem cell treatment, but ultimately a decision was made to undergo a course of two rounds of spinal platelet lysate injections in a clinic in Colorado.
However, according to the aforementioned more recent assessment in Mayo Clinic, my diagnosis appears to be a small fibre neuropathy.
I have not tried any medication yet but my symptoms are deteriorating rapidly. I am finding it increasingly difficult to walk because of the constant burning sensation, severe numbness and pain.
I am wondering whether my condition can benefit from the pain cream you mentioned in your post on Mayo Clinic Connect and if so how can I get it in Zimbabwe.
Kindly help.
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Like -
Helpful -
Hug
1 ReactionHello Nazir @nkhan1958, I see you are a new member this year. Welcome to Connect. I was also diagnosed with small fiber peripheral neuropathy at Rochester Mayo Clinic. It is in both legs, mostly in the ankles and feet. I have no pain with mine. I only have numbness and some tingling. It's been with me for well over 20+ years but I never bothered to have it diagnosed because my primary care doctor told me it was probably nerve damage and when I asked them how they could tell, he told me they could run some tests. My next question was if they find it's nerve damage what can they do to fix it. I was told nothing would fix it so I stopped asking until it seemed to be getting worse a few years ago which is when I had some tests including an EMG and saw a neurologist at Mayo Clinic. He told me if there was pain he could give me medications to address the pain but there was nothing that can help with the numbness. That started my search and was how I found Connect. You can read my complete story here if you want: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
I am tagging other members who have posted about CBD and other treatment methods that may be helpful for you. @artscaping and @jenniferhunter would you have any suggestions for Nazir?
John
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Helpful -
Hug
1 ReactionI have similar symptoms: my skin feels numb while the inside of my feet are burning like they are on fire -- all the time except a few hours twice a day when the meds are working ... I don't yet have it down to a fine science what to take when to stop the burning and stay stopped. Perhaps that is not possible. So far, my neurologist thinks Neuropathy, and Restless Leg Syndrome (this is on top of several other conditions I have that cause pain in feet and legs: bunions, arthritis, missing cartilage in feet. When the pain is very bad I figure out which 'ism' is causing it and take appropriate medicine. If I've already take medicine for one, I can't take more medicine until the first is wearing off ... so, I'm between a rock and a hard place with this condition. Then I just have to suffer for awhile -- it's wearing me out. Peggy
-
Like -
Helpful -
Hug
1 ReactionHi @pfbacon, have you talked with your neurologist to see if there may be alternative drugs/medications to the ones you are using that may offer longer relief for the pain? I only have the numbness but found something that helps for me - over the counter supplements, vitamins and minerals. Most of the people in the group where I found the supplements had the pain and numbness and were able to taper off of their medications and only use the supplements to get rid of their pain symptoms. You can read my story here if you want more information - https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
@clahar and @brendareid - I have used orthotics for plantar fascitis for 25 years or more! In the beginning, like you, I could hardly walk, but was amazed at the difference I felt after using the orthotics (when I started it was in the days before the Good Feet Store!!!). Anyway - they are worth every penny you spend on them!!!! barb
-
Like -
Helpful -
Hug
1 ReactionI have just found this discussion board. I recently started using CBD oil, but it is for sublingual use. I have 2 oils. One is 100%, or almost, CBD with no THC. The other is 1:1 CBD to THC, sublingual. I've had some unpleasant experiences when I added the 1:1 drops. Do you think I could try mixing it with a carrier oil for topical use, starting in tiny quantities? I have a syringe with measurements marked from 0.05 in half millilitres up to 1.0 ml so i can measure very carefully. I wonder if topical use is more predictable than oral.
@nkhan1958, @johnbishop, Good evening Nazir Kahn and welcome to our wonderful world of sharing experiences and supporting each other. I am very impressed with the care provided by Mayo Clinic Rochester and therefore I can only assume that your diagnosis of small fiber neuropathy was made after you had a skin test to measure the density of the small fibers in a small sample from your leg. If so, then we have the same condition, one in which our small nerves are starting to struggle to keep up the work they do for us. As I understand it, when that happens and they are unable to "communicate" or do their job well, the only thing they know how to do is send back pain signals. Since my diagnosis, my journey into the world of chronic pain has been rapid and intense. At this point, I am focused on controlling the level of pain and discomfort so that I may live my life without constant discomfort. Here is what I have found to be helpful, expressed in terms of my daily regimen. 1. Sleep in if you can and enjoy the morning's moments without pain.
2. Take a hot shower hitting all those suspect areas....hands, feet, and other muscles. 3. Turn on some beautiful music and do 20 minutes of gentle yoga stretches and strength building exercises followed by 10-15 minutes of meditation focusing on relaxation and awareness. 4. Ease into your day without a focus on productivity or anxiety-producing efforts. As I learned, anxiety produces pain which produces more anxiety and then more pain. Depending on where you are in the development of SFN, you may want to add medical marijuana to your coffee. A 2-1 level works for me the entire morning. (I can explain more if you choose.) . 5. Give your body permission to rest. If others are around, simply say, "My body needs to rest now." 20 minutes and you will feel stronger and have less anxiety. 6. Evening time, depending on how much activity you had during the day, should be a chance to prepare for sleeping. I again use my form of pain control. 7. After talking with your heath professionals, you may want to use a couple of medications or their equivalent, gabapentin, and nortriptyline. I take them only at night about one hour before bedtime. And finally, if the tingling in your hands and/or feet is intense, try getting a lidocaine cream compounded for you by a pharmacist. It is topical and yet it lasts just long enough for you to drift off into what should be good healing sleep. Don't give up......you can find the quality of life that you deserve. Best wishes, may you have pain free moments, hours, and days to enjoy. Chris
-
Like -
Helpful -
Hug
3 ReactionsI have been using it since April 2017. It seems to work a little, but it really it helping my arthritic knee! I am in Indiana and I order it online from Kentucky. Super fast shipping - two days for me. Google the company, Go Green Hemp.
I order the 500mg in the bottle and peppermint is our flavor. The cinnamon flavor is disgusting. I've used the balm, too, but can't see where it works.