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Posts (51)

Jun 12, 2019 · Living with Neuropathy - Welcome to the group in Neuropathy

@confused1955, I have a severe case of sfn and Erythromelagia in my feet. I understand your pain all too well. If I take a shower I am in agony all day from the warm water. The meds I take don’t work well, Gabapentin and Amitriptyline. There are many days I wish that I could be on a morphine drip because of the agony. I have not been given any kind of narcotics for pain management. The doctors want me to wean off the amitriptyline and try Cymbalta. I don’t think I could stand the weaning off period because the pain is at a 10 now for a good part of the day. I feel so awful for my husband and family because it’s not fair to them. I’m not functional any longer and I live in fear. Do you have CRPS in both hands? My feet get cold and hot and red, and when they are hanging down they turn purple. I have to keep them elevated most of the day. Do you have twitching in your hands? My left foot twitches all the time. I’m so sorry and I know how difficult it is to endure.

Jun 1, 2019 · Kneading massage for lower leg and foot neuropathy in Neuropathy

@hotfooted, Hi – It sounds like you are doing a little better! I also have SFN and Erythromelagia although the EM pain is not too bad except at night it can interfere with sleep. I have severe SFN mainly, my feet are mainly cold in toes and balls of feet. What type of Exercycle do you use? I have thought about getting one if it doesn’t put to much pressure on the balls of my feet. I can’t really do much right now but I try to swim if I am able. I can usually wear socks all day except sometimes at night my feet can get a little warm and red. What meds do you think has helped you the most if it’s ok to ask. I’m sensitive to meds and take just a low dose Gabapentin and Amitriptyline. I’m glad to hear that you are doing better!!

May 27, 2019 · Intravenous lidocaine infusions for Small Fiber Neuropathy in Neuropathy

@rwinney, I have not heard of IV infusions but I hope you will let us know how they work. I have it in my feet very severely. I really hope you get relief!

May 24, 2019 · Just Diagnosed with Small Fiber Neuropathy in Neuropathy

@johnbishop, @lisalucier – Thank you for responding to my question. I have been extremely frustrated with the level of care that I have received from the Neurologist. I cannot find anything about fasciculations with small fiber neuropathy. I have it mainly in my left foot and big toe where most of the nerve pain is. I can barely walk due to the pain, however my EMG appears normal and still waiting on small fiber results. Yes, I will probably have to seek a Neurologist out of network for a second opinion. I appreciate your help. -Laura

May 24, 2019 · Just Diagnosed with Small Fiber Neuropathy in Neuropathy

I had a normal EMG yesterday so I don’t have large fiber involvement. The Neurologist did the skin biopsy to see if it is small fiber which I think it might be. I hope to get results in a week or so. I had a normal EMG in 2005 when it first started however they didn’t have the skin biopsy then or it wasn’t offered. The pain actually lessened through the years but now it’s back with a vengeance. I also was diagnosed with Erythromelagia but it is relatively mild but the other nerve pain is vicious right now and am unable to do much. The Neurologist does not know what is causing the fasciculations in feet, toes, legs. I’m just wondering if it’s from nerve damage although the fasciculations usually occur in large fiber. It’s all so strange and difficult to figure out. Thank you for any insight you may have. -Laura

May 20, 2019 · Does anyone find that a type of shoe helps your foot neuropathy? in Neuropathy

@lorirenee1, Hi Lori…I had a normal EMG so they did the skin biopsy for small fiber which will take a week or so to get results. If it’s positive I go back in and they will do more blood work to try and determine the cause. I don’t know anything definitive as yet except for Erythromelagia but that doesn’t bother me as bad as the small fiber if that’s what it is. Neurologist said he didn’t see anything in the lumbar spine. He doesn’t know what is causing the left leg weakness or fasciculations in left foot especially in big toe. I don’t know that much yet but I feel like I’m wasting away from inactivity so I am eating some Ben and Jerry’s ice cream right now! He is sending me to a Dermatologist for Erythromelagia. And so now the waiting game once again but at least it’s a start. How are you??? Any relief yet from epidural? If not, have some Ben and Jerry’s with me!!!!!

May 19, 2019 · Does anyone find that a type of shoe helps your foot neuropathy? in Neuropathy

@lorirenee1, I feel for you and understand the excruciating pain all too well. I’m hoping that after you slept for a bit the pain subsided at least a little or maybe even a lot. I have been in severe pain daily for a few weeks and hope that something can be done…There is always hope. That epidural may still be taking it’s sweet time to take effect. At least I hope this is the case for you. I too, remember the good times with MaryJane and everything being in slow, mo or hilarious and then came all the delicious junk food and how much better it tasted under the influence…oh my. I will let you know how it goes tomorrow and I hope to receive some kind of game plan. I have fought the good fight but getting a bit worn out. Thanks for thinking of me and I will keep you posted. Peace, -Laura

May 16, 2019 · Does anyone find that a type of shoe helps your foot neuropathy? in Neuropathy

@lorirenee1, so good to hear from you and hearing about the continuing saga—the agony of da feet…That is interesting concerning the tiny distal fibers of the nerves causing pain in the feet. Wow, who would have known? I’m glad the doctor is working with you on this and assuming you are seeing an anesthesiologist? My nerve pain is so bizarre I never know from day to day where the pain will end up. Not having leg weakness today, but had it yesterday but who’s counting?? I’m with you in trying to ignore it most of the time except walking is so important and I can’t do much of that. Hopefully your epidural will soon kick in. I remember my husband several years ago came home from work and his knee was killing him and I mean it was bad!! I got him in for a steroid shot and he didn’t think it worked…took about ten days but it hasn’t hurt him since. That shot for me did absolutely nothing but oh well I tried and hoping for more answers on Monday. You need to let me know when you feel good and all about going out dancing!!! Gotta keep the sense of humor! You are so good at that and making me laugh!!!! -Laura