So happy to find this forum. I've had peripheral Neuropathy for 2 years, and have been so frustrated to find that my doctors don't really know what's causing it. They've ruled out many possibilities through many tests, but now all I have to work with is PT. Anyone else have this experience?
I struggled with PN for about 70 years before I learned how to deal with it. Then at some point a few years ago I heard that Tercumin would help. So I started taking about a quarter-teaspoon when the crap started. It worked so well that now I take that about every 2nd day, with some water. Now I have learned that I have a couple diseases which add to the problem; FKTN and LGMD2m. NIH says both are Rare diseases, thankfully. One of their sources says there are 8 cases of LGMD2m in the world; I would make 9. Both, then are my family myelomas , thus cancers. Anyway, These two are related to each other by mutation and AR . The mutations seem to occur near birth. Also, Tercumin is a blood thinner, so one has to be very careful. I call this pair, along with dilated cardiomyopathy "Yachats syndrome". My dentist found my problems, and others back up the work..
Welcome @mywits, I'm sorry to hear that you had complications following your knee replacement surgery. I was wearing compression socks before I had my right knee replaced to help reduce the swelling in my legs. You are right. They are tight and they definitely don't make your legs feel any better.
Do you mind sharing how long ago did you have your knee replacement surgery?
@amart26, You mentioned you have mild chronic femoral neuropathy from an anterior hip surgery in your previous post. You didn't mention if the doctor had any suggestions to help with the pain or help with getting you back to walking your dog which is important for you. I did see an article that mentions some treatment and exercises that might be helpful.
I have moved since my surgery the dr who did the surgery said”it takes time” with no answer for me… did 2 courses of PT with no change… the new ortho I saw in my new location told me after 2 years there is no hope for resolution… so I guess I’ll learn to live with it
So happy to find this forum. I've had peripheral Neuropathy for 2 years, and have been so frustrated to find that my doctors don't really know what's causing it. They've ruled out many possibilities through many tests, but now all I have to work with is PT. Anyone else have this experience?
Welcome @mywits, I'm sorry to hear that you had complications following your knee replacement surgery. I was wearing compression socks before I had my right knee replaced to help reduce the swelling in my legs. You are right. They are tight and they definitely don't make your legs feel any better.
Do you mind sharing how long ago did you have your knee replacement surgery?
I have CIPN which is Chemotherapy-induced peripheral neuropathy. In remission 6 months from Small Cell Lung Cancer. Sometimes when I wake up I have "claw hands" that are very painful. I wear socks and take 400 mg of Gabapentin. So far today is a good day. Mmmm everyday actually is a good day. I am alive .
I have CIPN which is Chemotherapy-induced peripheral neuropathy. In remission 6 months from Small Cell Lung Cancer. Sometimes when I wake up I have "claw hands" that are very painful. I wear socks and take 400 mg of Gabapentin. So far today is a good day. Mmmm everyday actually is a good day. I am alive .
Hello @oceanlady22, Welcome to Connect. It's great to hear your Small Cell Lung Cancer is in remission. I like your attitude! Everyday is a good day and presents us with new opportunities. I don't have the claw hands but I do have the weird looking hammer toes that seem to be so common with a lot of neuropathy folks.
I thought the following article might be helpful if you have not already seen it:
-- Everything You Need to Know About Claw Hand: https://www.healthline.com/health/claw-hand
Has your doctor or care team suggested any physcial therapy or other options to help with your hands?
Peripheral neuropathy has started in both of my hands now and it’s very difficult to sleep at night and now also very difficult to get through the day. It started slowly and built with a vengeance but I can’t seem to find anyone who is able to treat this kind of pain. They say that if it’s nerve pain there’s really nothing they can do. Pain management has started me on xtampza-ER And I’m not quite sure what it does, seems to help some thing but not the direct nerve pain. My biggest problem is describing how strong the pain is And I cannot believe that no one has been doing research on helping people that have to live with this. If anyone else is living in this intense situation with pain in their hands I’d love to hear more from you about how you cope with it. The only coping mechanism I found is freezing bottles of water wrapping them in towels and holding them in my hands until they get too cold to hold any longer. It doesn’t get rid of the pain but it seems to cool it down a little bit. It feels like hot liquid cayenne pepper running through my veins. How could this be possible? Is anyone else going through this?I have had peripheral neuropathy developing in my feet and ankles and over the years that has passed and settled down from extreme pain to kind of a numbness. There is also constant tingling in my hands as if they have gone to sleep but gone well past that “asleep” feeling.
What I was told was that if it is still an issue two years out, it is probably here to stay. My main issue is the numbness also. My hands - I constantly drop things and cannot use a pen, pencil, paintbrush for very long at all. As an artist, that is the pits. My feet are dumb across the bottom back to my heel and it feels like I have little sand bags under my toes. They tingle all the time. I have to be careful about hot or cold but then if I stub my toe or hit my finger on something, it about puts me on the floor. It is not debilitating but it is aggravating and sometimes depressing.
I hope for you some relief. I would be interested inn what you find out from the neurologist. I will be starting chemo again soon and suspect mine my be getting worse - but then who knows. Good luck on that doctor visit.
@grandma41 yes, the Gabapentin caused dizziness for me. My husband takes it with no issues at all. I almost fell a few times and I decided it was not worth the risk for me. I did take it for a few months; long enough for the mmedication to have worked if it was going to. I may have helped a litte.
I’m a retired art teacher and was practicing what I love to do which was paint. I had had peripheral neuropathy do to spinal compressions about 15 or 20 years ago. My feet are numb and little sandbags under my feet sounds familiar yes. But all of a sudden my hands have started. They told me that I have moderate stenosis at C6 and C7 . A cervical epidural did not help and they will do the facet joints in about a week. What bothers me is how extreme the pain in my hands is. Worse in my left hand my fingers will begin to curl every so often and stay there and then they’ll relax again but the pain is terrible. I drop things I’m terrified to try to pick up a brush again for fear of what will happen on the canvas. When I think that this has been my entire life the focus of what I’ve done, my work my hobby, I don’t even know what to think or feel. It’s too Much to try to take In. The pain is absolutely vicious. I can’t even describe it and I’m not sure that people believe me when I tell them about it because it’s one of those invisible things this pain oh my goodness it’s changed my life completely. They tell me nothing can be done about it
Peripheral neuropathy has started in both of my hands now and it’s very difficult to sleep at night and now also very difficult to get through the day. It started slowly and built with a vengeance but I can’t seem to find anyone who is able to treat this kind of pain. They say that if it’s nerve pain there’s really nothing they can do. Pain management has started me on xtampza-ER And I’m not quite sure what it does, seems to help some thing but not the direct nerve pain. My biggest problem is describing how strong the pain is And I cannot believe that no one has been doing research on helping people that have to live with this. If anyone else is living in this intense situation with pain in their hands I’d love to hear more from you about how you cope with it. The only coping mechanism I found is freezing bottles of water wrapping them in towels and holding them in my hands until they get too cold to hold any longer. It doesn’t get rid of the pain but it seems to cool it down a little bit. It feels like hot liquid cayenne pepper running through my veins. How could this be possible? Is anyone else going through this?I have had peripheral neuropathy developing in my feet and ankles and over the years that has passed and settled down from extreme pain to kind of a numbness. There is also constant tingling in my hands as if they have gone to sleep but gone well past that “asleep” feeling.
I am with you. Until I started to suffer from CIPN I knew nothing about Chemo Induced Peripheral neuropathy. My oncologist, my GP, & neurologist think I'm a bit of a nut. (only kidding) None of them know how to treat my pain or havoc it does to my day to day living. I am so lucky to be alive and everyday is truly a gift but last night at 2 AM I'm on the couch, heating pad, my Gabas (Gabapentin) & search a word. Its not a straight cancer problem, or a neurological one and all I can have are more tests. I'm up to 20mg of oxycodone3-4 x a day. I'm hoping maybe if enough people have complaints research & answers might follow. I mean when Eric Clapton says he has it in his hands & fingers Doctors might take notice. We are pain warriors and we fight the good fight.
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I struggled with PN for about 70 years before I learned how to deal with it. Then at some point a few years ago I heard that Tercumin would help. So I started taking about a quarter-teaspoon when the crap started. It worked so well that now I take that about every 2nd day, with some water. Now I have learned that I have a couple diseases which add to the problem; FKTN and LGMD2m. NIH says both are Rare diseases, thankfully. One of their sources says there are 8 cases of LGMD2m in the world; I would make 9. Both, then are my family myelomas , thus cancers. Anyway, These two are related to each other by mutation and AR . The mutations seem to occur near birth. Also, Tercumin is a blood thinner, so one has to be very careful. I call this pair, along with dilated cardiomyopathy "Yachats syndrome". My dentist found my problems, and others back up the work..
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1 ReactionThe right knee was Dec 2018 and the left knee was Nov 2020
I have moved since my surgery the dr who did the surgery said”it takes time” with no answer for me… did 2 courses of PT with no change… the new ortho I saw in my new location told me after 2 years there is no hope for resolution… so I guess I’ll learn to live with it
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1 ReactionWhat does PT do
The right knee was about 2 1/2 years ago and the left knee
I have CIPN which is Chemotherapy-induced peripheral neuropathy. In remission 6 months from Small Cell Lung Cancer. Sometimes when I wake up I have "claw hands" that are very painful. I wear socks and take 400 mg of Gabapentin. So far today is a good day. Mmmm everyday actually is a good day. I am alive .
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Hug
2 ReactionsHello @oceanlady22, Welcome to Connect. It's great to hear your Small Cell Lung Cancer is in remission. I like your attitude! Everyday is a good day and presents us with new opportunities. I don't have the claw hands but I do have the weird looking hammer toes that seem to be so common with a lot of neuropathy folks.
Here is another discussion you may want to join and learn what others have shared:
-- Small Cell Lung Cancer: https://connect.mayoclinic.org/discussion/small-cell-lung-cancer-1/
I thought the following article might be helpful if you have not already seen it:
-- Everything You Need to Know About Claw Hand: https://www.healthline.com/health/claw-hand
Has your doctor or care team suggested any physcial therapy or other options to help with your hands?
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Helpful -
Hug
2 ReactionsPeripheral neuropathy has started in both of my hands now and it’s very difficult to sleep at night and now also very difficult to get through the day. It started slowly and built with a vengeance but I can’t seem to find anyone who is able to treat this kind of pain. They say that if it’s nerve pain there’s really nothing they can do. Pain management has started me on xtampza-ER And I’m not quite sure what it does, seems to help some thing but not the direct nerve pain. My biggest problem is describing how strong the pain is And I cannot believe that no one has been doing research on helping people that have to live with this. If anyone else is living in this intense situation with pain in their hands I’d love to hear more from you about how you cope with it. The only coping mechanism I found is freezing bottles of water wrapping them in towels and holding them in my hands until they get too cold to hold any longer. It doesn’t get rid of the pain but it seems to cool it down a little bit. It feels like hot liquid cayenne pepper running through my veins. How could this be possible? Is anyone else going through this?I have had peripheral neuropathy developing in my feet and ankles and over the years that has passed and settled down from extreme pain to kind of a numbness. There is also constant tingling in my hands as if they have gone to sleep but gone well past that “asleep” feeling.
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Helpful -
Hug
3 ReactionsI’m a retired art teacher and was practicing what I love to do which was paint. I had had peripheral neuropathy do to spinal compressions about 15 or 20 years ago. My feet are numb and little sandbags under my feet sounds familiar yes. But all of a sudden my hands have started. They told me that I have moderate stenosis at C6 and C7 . A cervical epidural did not help and they will do the facet joints in about a week. What bothers me is how extreme the pain in my hands is. Worse in my left hand my fingers will begin to curl every so often and stay there and then they’ll relax again but the pain is terrible. I drop things I’m terrified to try to pick up a brush again for fear of what will happen on the canvas. When I think that this has been my entire life the focus of what I’ve done, my work my hobby, I don’t even know what to think or feel. It’s too Much to try to take In. The pain is absolutely vicious. I can’t even describe it and I’m not sure that people believe me when I tell them about it because it’s one of those invisible things this pain oh my goodness it’s changed my life completely. They tell me nothing can be done about it
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4 ReactionsI am with you. Until I started to suffer from CIPN I knew nothing about Chemo Induced Peripheral neuropathy. My oncologist, my GP, & neurologist think I'm a bit of a nut. (only kidding) None of them know how to treat my pain or havoc it does to my day to day living. I am so lucky to be alive and everyday is truly a gift but last night at 2 AM I'm on the couch, heating pad, my Gabas (Gabapentin) & search a word. Its not a straight cancer problem, or a neurological one and all I can have are more tests. I'm up to 20mg of oxycodone3-4 x a day. I'm hoping maybe if enough people have complaints research & answers might follow. I mean when Eric Clapton says he has it in his hands & fingers Doctors might take notice. We are pain warriors and we fight the good fight.
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Like -
Helpful -
Hug
3 Reactions