Oh my it’s absolutly the worst possible symptoms I have ever experienced in my life! Burning numbness tight severe pulling and pressure on sooo many areas of my body.hands feet are just the beginning. Only treatment so far after 10 months of scans and tests and biopsies and pet,scan is some pain meds but they just help a certain amount. I am starting to go crazy,sorry I rambled....how are you doing? Oh my name is Larry I’m 65 years old.
Hi, Larry. P. Neuropathy 20 yrs here. Personally, I found that narcotics did not help nerve pain. The most beneficial drug I found is gabapentin (start at a low dose and move up). Just my opinion.
Oh my it’s absolutly the worst possible symptoms I have ever experienced in my life! Burning numbness tight severe pulling and pressure on sooo many areas of my body.hands feet are just the beginning. Only treatment so far after 10 months of scans and tests and biopsies and pet,scan is some pain meds but they just help a certain amount. I am starting to go crazy,sorry I rambled....how are you doing? Oh my name is Larry I’m 65 years old.
Hi Larry @larryl, welcome to Mayo Clinic Connect. I'm glad you found us! There is definitely a lot of different experiences here with different treatments and diagnosis. I have idiopathic small fiber PN but only have numbness and no pain (20+ years). My neuropathy is in my feet, ankles and just above the ankles a little.
Did your doctors or neurologist give you a diagnosis yet?
Hi, Larry. P. Neuropathy 20 yrs here. Personally, I found that narcotics did not help nerve pain. The most beneficial drug I found is gabapentin (start at a low dose and move up). Just my opinion.
Hi Peggy, thanks so much for responding and so quickly. I had tried a trial of Neurontin and lyrical but it was not helpful Right now it seems the only med is oxycodone which I know can be a problem down the line,but it seems to help me. It seems I have soo many symptoms of ameloidosis,but all tests have been negative. I plan to listen to all of you and all others responding you all are so very kind!
Hi Larry @larryl, welcome to Mayo Clinic Connect. I'm glad you found us! There is definitely a lot of different experiences here with different treatments and diagnosis. I have idiopathic small fiber PN but only have numbness and no pain (20+ years). My neuropathy is in my feet, ankles and just above the ankles a little.
Did your doctors or neurologist give you a diagnosis yet?
Hi John thanks for responding, all my symptoms seem to point to amyloidosis,but ALL tests so far are negative.Biopsis,pet scan,mri,s bone scans,genetic testing ,my doc has ran them all. One of my main problems is being afraid of the future and what will happen to me. I try to stay positive but sometimes I feel like giving up. Maybe this Mayo connect can help me,you are so kind to welcome me. I do look forward to sharing with you and from you.
Hi John thanks for responding, all my symptoms seem to point to amyloidosis,but ALL tests so far are negative.Biopsis,pet scan,mri,s bone scans,genetic testing ,my doc has ran them all. One of my main problems is being afraid of the future and what will happen to me. I try to stay positive but sometimes I feel like giving up. Maybe this Mayo connect can help me,you are so kind to welcome me. I do look forward to sharing with you and from you.
Hi, @larryl - I'd like to add my welcome to Mayo Clinic Connect. Since you mentioned an interest in amyloidosis, as all your symptoms seem to point that way (though all tests so far are negative), you may be interested in checking out this thread https://connect.mayoclinic.org/discussion/al-amyloidosis.
Hi Peggy, thanks so much for responding and so quickly. I had tried a trial of Neurontin and lyrical but it was not helpful Right now it seems the only med is oxycodone which I know can be a problem down the line,but it seems to help me. It seems I have soo many symptoms of ameloidosis,but all tests have been negative. I plan to listen to all of you and all others responding you all are so very kind!
I wish I could tolerate hydrocodone. I did a long time ago, but years of meds have wrecked my stomach. I just had dental work done and needed hydrocodone. After a couple of doses, I couldn’t take it anymore. I’m sure you know to never take it on an empty stomach. All of us helping each other helps us get through chronic pain which is really difficult to live with. When they isolate, like I used to do, it allows the brain time to focus on our pain which causes depression which increases the pain which causes more depression… A vicious circle. It was hard for me to break it, but, thank God, I did. God bless you John, and everyone else who suffers.
My PN was not diagnosed for over 20 years. After reading most of the posts over the past year I value John's opinion and advice as we both have similar Small Fiber Peripheral Neuropathy and no pain. (I feel fortunate after reading the other stories of painful PN) Anyway, my condition stayed in my feet and ankles for 20 years and then my hands began to tingle. A lot. Meanwhile, my feet have been largely quiet during this new incursion. I have entered this website looking for an answer to Stem Cell treatment (Currently a huge ad campaign) only to find that it works mainly for feet! ($5000) Hands, not so much. So I took the advice of others using Cannabis Oil and am giving it a try. (Cannabis tincture CBD 5:1) So far I haven't noticed a lot of relief. Thanks to all who offer their posts to help others.
I started back on the CBD oil (1/2 dropper equals 50 mg. of full-spectrum hemp extract). I only had two doses today, but I do not feel any improvement. Anyone using the same for pain notice improvement? And does it take days? Weeks? From what I’ve read online, you should feel improvement within 30 minutes when used sublingually or swallowed alone or in a beverage. Inhaling it in an approved vape should bring immediate relief. I plan to discuss with my neurologist the possibility of THC again. I don’t like using THC during the day, but when I used it at bedtime in 2016, it did allow me to sleep.
I started back on the CBD oil (1/2 dropper equals 50 mg. of full-spectrum hemp extract). I only had two doses today, but I do not feel any improvement. Anyone using the same for pain notice improvement? And does it take days? Weeks? From what I’ve read online, you should feel improvement within 30 minutes when used sublingually or swallowed alone or in a beverage. Inhaling it in an approved vape should bring immediate relief. I plan to discuss with my neurologist the possibility of THC again. I don’t like using THC during the day, but when I used it at bedtime in 2016, it did allow me to sleep.
I have found a 250 mg CBD ointment with lidocaine works great during the day. For night, I rub on 70 cabs/30 THC. It calms down my pain and allows me to get to sleep.
I have found a 250 mg CBD ointment with lidocaine works great during the day. For night, I rub on 70 cabs/30 THC. It calms down my pain and allows me to get to sleep.
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Hi, Larry. P. Neuropathy 20 yrs here. Personally, I found that narcotics did not help nerve pain. The most beneficial drug I found is gabapentin (start at a low dose and move up). Just my opinion.
Hi Larry @larryl, welcome to Mayo Clinic Connect. I'm glad you found us! There is definitely a lot of different experiences here with different treatments and diagnosis. I have idiopathic small fiber PN but only have numbness and no pain (20+ years). My neuropathy is in my feet, ankles and just above the ankles a little.
Did your doctors or neurologist give you a diagnosis yet?
Hope you find something that works for you.
Hi Peggy, thanks so much for responding and so quickly. I had tried a trial of Neurontin and lyrical but it was not helpful Right now it seems the only med is oxycodone which I know can be a problem down the line,but it seems to help me. It seems I have soo many symptoms of ameloidosis,but all tests have been negative. I plan to listen to all of you and all others responding you all are so very kind!
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Helpful -
Hug
2 ReactionsHi John thanks for responding, all my symptoms seem to point to amyloidosis,but ALL tests so far are negative.Biopsis,pet scan,mri,s bone scans,genetic testing ,my doc has ran them all. One of my main problems is being afraid of the future and what will happen to me. I try to stay positive but sometimes I feel like giving up. Maybe this Mayo connect can help me,you are so kind to welcome me. I do look forward to sharing with you and from you.
-
Like -
Helpful -
Hug
1 ReactionHi, @larryl - I'd like to add my welcome to Mayo Clinic Connect. Since you mentioned an interest in amyloidosis, as all your symptoms seem to point that way (though all tests so far are negative), you may be interested in checking out this thread https://connect.mayoclinic.org/discussion/al-amyloidosis.
-
Like -
Helpful -
Hug
1 ReactionI wish I could tolerate hydrocodone. I did a long time ago, but years of meds have wrecked my stomach. I just had dental work done and needed hydrocodone. After a couple of doses, I couldn’t take it anymore. I’m sure you know to never take it on an empty stomach. All of us helping each other helps us get through chronic pain which is really difficult to live with. When they isolate, like I used to do, it allows the brain time to focus on our pain which causes depression which increases the pain which causes more depression… A vicious circle. It was hard for me to break it, but, thank God, I did. God bless you John, and everyone else who suffers.
-
Like -
Helpful -
Hug
1 ReactionMy PN was not diagnosed for over 20 years. After reading most of the posts over the past year I value John's opinion and advice as we both have similar Small Fiber Peripheral Neuropathy and no pain. (I feel fortunate after reading the other stories of painful PN) Anyway, my condition stayed in my feet and ankles for 20 years and then my hands began to tingle. A lot. Meanwhile, my feet have been largely quiet during this new incursion. I have entered this website looking for an answer to Stem Cell treatment (Currently a huge ad campaign) only to find that it works mainly for feet! ($5000) Hands, not so much. So I took the advice of others using Cannabis Oil and am giving it a try. (Cannabis tincture CBD 5:1) So far I haven't noticed a lot of relief. Thanks to all who offer their posts to help others.
-
Like -
Helpful -
Hug
1 ReactionI started back on the CBD oil (1/2 dropper equals 50 mg. of full-spectrum hemp extract). I only had two doses today, but I do not feel any improvement. Anyone using the same for pain notice improvement? And does it take days? Weeks? From what I’ve read online, you should feel improvement within 30 minutes when used sublingually or swallowed alone or in a beverage. Inhaling it in an approved vape should bring immediate relief. I plan to discuss with my neurologist the possibility of THC again. I don’t like using THC during the day, but when I used it at bedtime in 2016, it did allow me to sleep.
-
Like -
Helpful -
Hug
1 ReactionI have found a 250 mg CBD ointment with lidocaine works great during the day. For night, I rub on 70 cabs/30 THC. It calms down my pain and allows me to get to sleep.
-
Like -
Helpful -
Hug
2 ReactionsI can’t find strong enough cod products,tho and oils yes,but still with limited success for polyneuropathy.