Good evening @marie1959, it appears that you have been a member of Connect for quite some time....since 2018. I hope you have benefited from the posts you have read along the way. If I understand your discussion title, you are now dealing with PN (peripheral neuropathy) that seems to be centered on your fingers and toes. That is quite similar to my history. I was diagnosed with SFN (small fiber neuropathy) about the same time and for the same reasons. I did have a skin biopsy which supported the SFN diagnosis and I have been struggling along with tingling fingers and toes. I also started with Gabapentin. It worked as long as I took it only at night.
Do you take any other medication? Have you tried a compounded topical created by a compound pharmacist. I also found that to be helpful. It is lidocaine based and your clinician can add other components as your PN changes.
Several years ago I was introduced to medical cannabis as an alternative to the compound. I use a 1:3 CBD/THC balm from Papa and Barkley for acute pain and a 3:1 cbd/THC for acute pain. The P and B website has very helpful information that began my education. They are also helpful through their customer service portal.
You may want to try to compounded ointment first to see if you can find relief. I don't know where you live and what your state laws are for marijuana.
If you will let me know how you feel about these suggestions, I will continue to support your efforts.
May you be free of suffering and the causes of suffering.
Chris
I have not taken any other meds. Tapering the gabapentin now and will try another med. I have not tried any compounds. I live in Minnesota. Thank you for your comments.
I have not taken any other meds. Tapering the gabapentin now and will try another med. I have not tried any compounds. I live in Minnesota. Thank you for your comments.
Hi there, fellow Minnesotan. This is a great state with wonderful folks and superb medical care. It is also a state that permits the use of medical cannabis when prescribed by a physician for a chronic condition. Have you checked on that possibility for yourself?
Chris
Hi @marie1959, I would like to add my welcome to Connect along with Chris @artscaping. Chris has provided some great suggestions and experiences that have helped her. You might also find the following information from the Foundation for Peripheral Neuropathy helpful -- Treatments: https://www.foundationforpn.org/treatments/, as well as the neuropathy stories from other members available in this discussion:
Hello @marie1959. I noticed you posted about peripheral neuropathy in your original post so you will see I have moved your post into an existing discussion on the same topic where members such as @trishh@betoma and @amahoff.
I also see the @artscaping and @johnbishop have come in to share some information with you. How are you feeling today?
Hi everyone , I have small fibre neuropathy diagnosed 4 years ago , I am a sixty year old woman . I have tolerated this condition until now . I don’t want to blame the phyzer vaccine , but 2 days after having it all hell broke lose . I am in a lot of pain now , mainly feet , burning , loss of sensation and my balance has become poor . Why I am writing this is I now am also experiencing Unexpected bouts of extreme heat that comes on for no reason , it doesn’t last long but it is quite distressing. Is there anyone who has a problem with their temperature and this condition please respond if you experience this and if you know why
Hi everyone , I have small fibre neuropathy diagnosed 4 years ago , I am a sixty year old woman . I have tolerated this condition until now . I don’t want to blame the phyzer vaccine , but 2 days after having it all hell broke lose . I am in a lot of pain now , mainly feet , burning , loss of sensation and my balance has become poor . Why I am writing this is I now am also experiencing Unexpected bouts of extreme heat that comes on for no reason , it doesn’t last long but it is quite distressing. Is there anyone who has a problem with their temperature and this condition please respond if you experience this and if you know why
Hi, I am a 67 year old guy diagnosed with Small Fibre Neuropathy 5 years ago, with burning soles of my feet 24/7 worse at night. I now limit my time on my feet to 5.30am to about 1.00pm and never wear shoes or even socks in an effort to limit the pain which always increases after 4.00pm or so. Have been on Pregabalin 150mg morning and night for over 4 1/2 years and tolerate the side effects because I'd rather not take an opioid.
I first experienced burning on the soles of my feet after work around 6pm, and this was for about 7 years before the pain suddenly escalated to unbearable over just 4 days at the end of 2016, never to return to those early levels.
I have experienced some night sweats but whether it's from SFN or something else, I can't say. I can relate to loss of balance, I tend to crash into furniture as I walk past, or bang my hand against things and cause a bruise. Other things like somnolence, fatigue, depressed mood, sleep deprivation, and memory depletion I put down to the combination of Pregabalin my hypertension medication and the whole SFN experience causing me to have to retire from my career 5 years early, change from an active outdoor life to a sedentary indoor one has taken a toll on me, physically and mentally. I am fortunate to have a loving, supportive wife, children and grandchildren to keep me going. This is my first post ever, and probably too long, but is there anyone else missing sleep due to the night time pain?
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Anyone have relief for fingers and toes? Gabapentin has not worked. Constant pain.
Good evening @marie1959, it appears that you have been a member of Connect for quite some time....since 2018. I hope you have benefited from the posts you have read along the way. If I understand your discussion title, you are now dealing with PN (peripheral neuropathy) that seems to be centered on your fingers and toes. That is quite similar to my history. I was diagnosed with SFN (small fiber neuropathy) about the same time and for the same reasons. I did have a skin biopsy which supported the SFN diagnosis and I have been struggling along with tingling fingers and toes. I also started with Gabapentin. It worked as long as I took it only at night.
Do you take any other medication? Have you tried a compounded topical created by a compound pharmacist. I also found that to be helpful. It is lidocaine based and your clinician can add other components as your PN changes.
Several years ago I was introduced to medical cannabis as an alternative to the compound. I use a 1:3 CBD/THC balm from Papa and Barkley for acute pain and a 3:1 cbd/THC for acute pain. The P and B website has very helpful information that began my education. They are also helpful through their customer service portal.
You may want to try to compounded ointment first to see if you can find relief. I don't know where you live and what your state laws are for marijuana.
If you will let me know how you feel about these suggestions, I will continue to support your efforts.
May you be free of suffering and the causes of suffering.
Chris
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Like -
Helpful -
Hug
1 ReactionI have not taken any other meds. Tapering the gabapentin now and will try another med. I have not tried any compounds. I live in Minnesota. Thank you for your comments.
Hi there, fellow Minnesotan. This is a great state with wonderful folks and superb medical care. It is also a state that permits the use of medical cannabis when prescribed by a physician for a chronic condition. Have you checked on that possibility for yourself?
Chris
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Like -
Helpful -
Hug
1 ReactionHi @marie1959, I would like to add my welcome to Connect along with Chris @artscaping. Chris has provided some great suggestions and experiences that have helped her. You might also find the following information from the Foundation for Peripheral Neuropathy helpful -- Treatments: https://www.foundationforpn.org/treatments/, as well as the neuropathy stories from other members available in this discussion:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Are you able to share a little more about your diagnosis and any treatments you've tried?
Hello @marie1959. I noticed you posted about peripheral neuropathy in your original post so you will see I have moved your post into an existing discussion on the same topic where members such as @trishh @betoma and @amahoff.
I also see the @artscaping and @johnbishop have come in to share some information with you. How are you feeling today?
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Helpful -
Hug
1 ReactionNo change in my pn. Weaning gabapentin to try something else.
Yes, just another of the many annoying and/or painful things that come with PN. Do you consider leg (calf) cramps a spasm? They can be painful?
Hi everyone , I have small fibre neuropathy diagnosed 4 years ago , I am a sixty year old woman . I have tolerated this condition until now . I don’t want to blame the phyzer vaccine , but 2 days after having it all hell broke lose . I am in a lot of pain now , mainly feet , burning , loss of sensation and my balance has become poor . Why I am writing this is I now am also experiencing Unexpected bouts of extreme heat that comes on for no reason , it doesn’t last long but it is quite distressing. Is there anyone who has a problem with their temperature and this condition please respond if you experience this and if you know why
-
Like -
Helpful -
Hug
1 ReactionHi, I am a 67 year old guy diagnosed with Small Fibre Neuropathy 5 years ago, with burning soles of my feet 24/7 worse at night. I now limit my time on my feet to 5.30am to about 1.00pm and never wear shoes or even socks in an effort to limit the pain which always increases after 4.00pm or so. Have been on Pregabalin 150mg morning and night for over 4 1/2 years and tolerate the side effects because I'd rather not take an opioid.
I first experienced burning on the soles of my feet after work around 6pm, and this was for about 7 years before the pain suddenly escalated to unbearable over just 4 days at the end of 2016, never to return to those early levels.
I have experienced some night sweats but whether it's from SFN or something else, I can't say. I can relate to loss of balance, I tend to crash into furniture as I walk past, or bang my hand against things and cause a bruise. Other things like somnolence, fatigue, depressed mood, sleep deprivation, and memory depletion I put down to the combination of Pregabalin my hypertension medication and the whole SFN experience causing me to have to retire from my career 5 years early, change from an active outdoor life to a sedentary indoor one has taken a toll on me, physically and mentally. I am fortunate to have a loving, supportive wife, children and grandchildren to keep me going. This is my first post ever, and probably too long, but is there anyone else missing sleep due to the night time pain?
-
Like -
Helpful -
Hug
2 Reactions