@fisbo@redhatter here
I have what my Drs call Idiopathic small nerve neuropathy and idiopathic peripheral neuropathy. They think it was caused by a virus which I had at the time. I went to work at the casino with chills, and hot flashes almost at the same time along with every bone in my body hurting. It hurt to walk but I forced myself. I told my Supervisor that I wasn’t feeling good and asked if there was an early out could I take it and go home? I lasted about 2 hrs. Slowly walking around checking on machines and customers. I had 4 steps to climb to get to from the pit to the main level. I couldn’t make it up them with out my lower legs giving out on me and I stumbled and fell face first into the steps. Needless to say I was sent home via an ambulance ride to the local hospital ER where they checked me out and couldn’t find anything obviously wrong with me - drug related in my blood system or showing effects of drugs. They called my husband-then boyfriend to come and get me at 3:30am. From there and for the next 6 months I underwent test after test until all the could find was the Neuropathy and because they couldn’t find what caused it, they called it Idiopathic small nerve peripheral neuropathy
Hey red, I starting thinking the comment was from ME! When I got the BIG DOSE of Neuropathy, I had a walker to walk even in my house!! Best news, if you get the right Drug, Med, CBD+...(we are all SO different) you will be better. The BIG one, hate to say it....is EXERCISE!!! I never did much. I do NOT like it. I had my four kids, a rotten husband and SO MUCH work to do I ignored my early warnings. I have Idiopathic PN, and no sense in running all over the place trying to figure out where it comes from. How would that help our pain?
Now, since I MAKE myself exercise...keep the blood flowing, the circulation GOOD, I am VERY active and feel and do better than I did 10 years ago. No kidding. I am old and not tired, even though I have pain in my feet and arms and hands. MOSTLY the feeet, but I make myself exercise, and it pays off. Best wishes and good luck!!!
Fala
@fisbo@redhatter here
I have what my Drs call Idiopathic small nerve neuropathy and idiopathic peripheral neuropathy. They think it was caused by a virus which I had at the time. I went to work at the casino with chills, and hot flashes almost at the same time along with every bone in my body hurting. It hurt to walk but I forced myself. I told my Supervisor that I wasn’t feeling good and asked if there was an early out could I take it and go home? I lasted about 2 hrs. Slowly walking around checking on machines and customers. I had 4 steps to climb to get to from the pit to the main level. I couldn’t make it up them with out my lower legs giving out on me and I stumbled and fell face first into the steps. Needless to say I was sent home via an ambulance ride to the local hospital ER where they checked me out and couldn’t find anything obviously wrong with me - drug related in my blood system or showing effects of drugs. They called my husband-then boyfriend to come and get me at 3:30am. From there and for the next 6 months I underwent test after test until all the could find was the Neuropathy and because they couldn’t find what caused it, they called it Idiopathic small nerve peripheral neuropathy
Yes it's a cop out really because it's the same thing as peripheral neuropathy. They want to make it sound like it's not so bad which it is. I have never experienced anything like it and my life has altered dramatically because if it. I go to bed early to sleep off the pain. Neurology just say pain clinic and mental health will help well I don't know how. Pregabalin is probably going to be my next port of call. It works but there are side effects weight gain being one and that's not over eating which I don't do. I just hope you can get sorted out do you experience pain pins and needles in the feet and up legs to knees?
Hi, I have idiopathic peripheral neuropathy which has gradually worsened over the last 10 years, but dramatically worsened after 2nd moderna vaccine. Getting IVIG and taking Lyrica. Now I’m suffering with advanced arthritis in right hip and considering hip replacement surgery. Has anyone had hip replacement? I’m terrified of being worse off since I already have such poor mobility.
I also have PN secondary to scoliosis surgery ×6. BK Amp 51/2 years ago. Have had both hips replaced for severe arthritis, bone on bone. Joint pain was gone immediately post op with some incisions discomfort. PT will help you to get mobil safely.
I have seen two neurologists. The first didn't seem to know or care. My primary doctor recommended a different neurologist. He was very helpful. I had never heard the term "small fiber" before and neither doctor asked about my background but I don't have a history or anything that might have caused it.
My doctor recommended nortriptyline (2 / 25mg capsules) in the evening. Now I sleep very soundly and most of the time it seems like I don't have neuropathy. Hoping it doesn't get worse.
Hola e leído tu comentario y quisiera preguntar el efecto de la medicación nueva que estás tomando, nortriptilina, además de permitirte dormir profundamente te quita el dolor en algún momento?.Pregunto esto porque decís qué a veces te parece no tener neuropatía.
Tengo neuropatía de origen desconocido, qué me impide caminar correctamente, no tengo equilibrio, tengo espasticidad, poco o nada siento mis piernas pero si dolor ante ciertos estímulos, sobretodo los punzantes. Solo en esas ocasiones tengo dolor.
@user_ch98d0b5c - Well, I fit that condition...idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.
Hola e leído tu comentario y quisiera preguntar el efecto de la medicación nueva que estás tomando, nortriptilina, además de permitirte dormir profundamente te quita el dolor en algún momento?.Pregunto esto porque decís qué a veces te parece no tener neuropatía.
Tengo neuropatía de origen desconocido, qué me impide caminar correctamente, no tengo equilibrio, tengo espasticidad, poco o nada siento mis piernas pero si dolor ante ciertos estímulos, sobretodo los punzantes. Solo en esas ocasiones tengo dolor.
Actually the only thing I feel is occasional tingling and that isn't very often. I hope it doesn't get worse. I take Nortriptyline every night and have been able to sleep very well. Your problem sounds very difficult. I'm sure you have checked many places for answers. I wish I could offer real solutions. You might get help here: https://www.hopkinsmedicine.org/search?q=spasticity
Yes I have it very bad in my feet and legs. Feel weakness in legs and the pain is unbearable. The tablets don't work and my life has just changed dramatically. I hope you are not as bad as me.
Yes I have it very bad in my feet and legs. Feel weakness in legs and the pain is unbearable. The tablets don't work and my life has just changed dramatically. I hope you are not as bad as me.
Hi,
I comment over and over with the same thing. Sorry, do not want to bore anyone, just the newbies need to hear ...CBD works for me and THC cream at night. Cannot take THC orally...haha getting "high" days are over for this chic! I tried with and without and the stuff is pricey, but it WORKS (ON FOOT RUBS)! Good luck, sorry for you and me!!
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Hey red, I starting thinking the comment was from ME! When I got the BIG DOSE of Neuropathy, I had a walker to walk even in my house!! Best news, if you get the right Drug, Med, CBD+...(we are all SO different) you will be better. The BIG one, hate to say it....is EXERCISE!!! I never did much. I do NOT like it. I had my four kids, a rotten husband and SO MUCH work to do I ignored my early warnings. I have Idiopathic PN, and no sense in running all over the place trying to figure out where it comes from. How would that help our pain?
Now, since I MAKE myself exercise...keep the blood flowing, the circulation GOOD, I am VERY active and feel and do better than I did 10 years ago. No kidding. I am old and not tired, even though I have pain in my feet and arms and hands. MOSTLY the feeet, but I make myself exercise, and it pays off. Best wishes and good luck!!!
Fala
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4 ReactionsYes it's a cop out really because it's the same thing as peripheral neuropathy. They want to make it sound like it's not so bad which it is. I have never experienced anything like it and my life has altered dramatically because if it. I go to bed early to sleep off the pain. Neurology just say pain clinic and mental health will help well I don't know how. Pregabalin is probably going to be my next port of call. It works but there are side effects weight gain being one and that's not over eating which I don't do. I just hope you can get sorted out do you experience pain pins and needles in the feet and up legs to knees?
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1 ReactionI also have PN secondary to scoliosis surgery ×6. BK Amp 51/2 years ago. Have had both hips replaced for severe arthritis, bone on bone. Joint pain was gone immediately post op with some incisions discomfort. PT will help you to get mobil safely.
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2 ReactionsHola e leído tu comentario y quisiera preguntar el efecto de la medicación nueva que estás tomando, nortriptilina, además de permitirte dormir profundamente te quita el dolor en algún momento?.Pregunto esto porque decís qué a veces te parece no tener neuropatía.
Tengo neuropatía de origen desconocido, qué me impide caminar correctamente, no tengo equilibrio, tengo espasticidad, poco o nada siento mis piernas pero si dolor ante ciertos estímulos, sobretodo los punzantes. Solo en esas ocasiones tengo dolor.
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1 ReactionPlease post any pills that help! My doc says:”so you’ve got arthritis all over! Take pain pills! 😳
Gabapentin helps me for the last few years. John
Actually the only thing I feel is occasional tingling and that isn't very often. I hope it doesn't get worse. I take Nortriptyline every night and have been able to sleep very well. Your problem sounds very difficult. I'm sure you have checked many places for answers. I wish I could offer real solutions. You might get help here: https://www.hopkinsmedicine.org/search?q=spasticity
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1 ReactionMine is very very bad. No hope in sight.
Mine is very very painful all the time. And I have GERD on top of that. Stomach pain and neuropathy. Horrible.
I can’t do the THC makes me have seizures.