Amanda, Connect Moderator | @amandajro | Dec 9, 2020
Hi @jimmy370 . One of our mentors, @artscaping has shared about her experience with burning in her legs in another discussion in this group and provided some insight as to what she has done to deal with that since.
Have you been diagnosed with Neuropathy? When did this burning start?
Hi @jimmy370 . One of our mentors, @artscaping has shared about her experience with burning in her legs in another discussion in this group and provided some insight as to what she has done to deal with that since.
Have you been diagnosed with Neuropathy? When did this burning start?
@jimmy370
Jim, I am very sorry to hear you have been suffering from burning feet and legs since 2012. So, let me understand what you are saying here. You have been to several doctors and not one of them has been able to help you, and not one of them has suggested it might be neuropathy? This mystifies me. They should have tested you for that the very first thing. I would suggest seeing a doctor, perhaps a neurologist, and requesting that they test you for small fiber and large fiber peripheral neuropathy. On google you can find out what tests are available, there are 3 that I know about. In the eight years that you have had this, what has been the level of your pain? What steps have you taken for the pain? Good luck to you, Hank
Neurologists in the area of Albany basically suck. I went to NYC to have biopsies done to confirm small fiber neuropathy. I also have burning and pain from Complex Regional Pain Syndrome in both feet and moving up my legs. I see a marvelous pain management doctor. I had a spinal cord stimulator implanted one in 2012 and a more up-to-date one in 2018 by a neurosurgeon. I have been seeing this pain management doctor for 9 years. I use lidoderm pain patches, lidocaine-prilocaine cream, as well as having a variety of procedures done that some have given me up to two years of pain relief.
Good evening I have CRPS, had spinal cord stimulus but leads Crack and would shock me on any movement, leg and foot pain getting worst. I never put in a device yet. What did you do 2 get relief for 2 years, am crying over here, can't sleep long even with my mess. Some days I just want to end my life I see no future for me. Am really a burden to my family. Please advise
Good evening I have CRPS, had spinal cord stimulus but leads Crack and would shock me on any movement, leg and foot pain getting worst. I never put in a device yet. What did you do 2 get relief for 2 years, am crying over here, can't sleep long even with my mess. Some days I just want to end my life I see no future for me. Am really a burden to my family. Please advise
Hello @neverrest, I am so sorry to hear that you are in such pain and not able to sleep much. Good sleep is so important for helping with your health. Are you able to discuss the pain and not being able to sleep with your doctor?
Good evening I have CRPS, had spinal cord stimulus but leads Crack and would shock me on any movement, leg and foot pain getting worst. I never put in a device yet. What did you do 2 get relief for 2 years, am crying over here, can't sleep long even with my mess. Some days I just want to end my life I see no future for me. Am really a burden to my family. Please advise
Hello @neverrest. The Connect community understands that you are in a difficult place right now and we want you to know that we are here for you. This is a safe place to talk as you feel the need. I also want you to know about the National Suicide Prevention Lifeline at 1-800-273-8255 that you can call any time for immediate help with trained counsellors. Please call them if you are feeling threatened by your feelings of ending your life.
Have you had a chance to review the suggestions by @amandaburnett and @johnbishop? When is the last time you have sought medical care for your pain and/or lack of sleep?
Neurologists in the area of Albany basically suck. I went to NYC to have biopsies done to confirm small fiber neuropathy. I also have burning and pain from Complex Regional Pain Syndrome in both feet and moving up my legs. I see a marvelous pain management doctor. I had a spinal cord stimulator implanted one in 2012 and a more up-to-date one in 2018 by a neurosurgeon. I have been seeing this pain management doctor for 9 years. I use lidoderm pain patches, lidocaine-prilocaine cream, as well as having a variety of procedures done that some have given me up to two years of pain relief.
Yes, I also had to have a psych review with psychiatrist. Currently I am on hold to have yet another trial and implant lower in my spine as my feet are quite painful – CRPS, SFN, and a couple of bad surgeries years ago.
Yes, I also had to have a psych review with psychiatrist. Currently I am on hold to have yet another trial and implant lower in my spine as my feet are quite painful – CRPS, SFN, and a couple of bad surgeries years ago.
Yes, a temporary and if it works the psych review and then the implant. So you are saying the temporary worked for you? And then the permanent implant also worked for you?
I had my first stim implanted in 2012 and my second in 2018. I had to have the psych review before the trial. I am looking at a third trial but my lawyer is going to fight Workers' Comp denial so I will be on hold for a while.
I do very much appreciate the stim! My last implant was not done as well as the first and I have learned to work with it. When I am in one position and set my remote, when I get out of that position things don't act the same, so I need to make another adjustment. I didn't have that problem with the first one. Because what I have doesn't cover my lower legs and feet well enough for me to be able to garden comfortably and only for a very short time as I use a garden bench, my pain management doc is going to do the trial lower in my back. If successful, he will also do the implant. The psych review wasn't any bother. Just be honest and positive about your need for relief to function on a better level.
Any luck? I have the same problem. I was born and raised in Albany, NY but now in GA. Can't get no answers. Went to a neurologist in 2020 and had therapy on my legs. Couldn't walk much after I had a Shingrix shot. Sick for 4 months. Disappeared as fast as it started, and now the legs and feet thing started AGAIN. Back to the neurologist and am going to have another nerve study and a MRI for my back but haven't had it yet.
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Hi @jimmy370 . One of our mentors, @artscaping has shared about her experience with burning in her legs in another discussion in this group and provided some insight as to what she has done to deal with that since.
Have you been diagnosed with Neuropathy? When did this burning start?
It started 2012 nobody told I had nurapthy
@jimmy370
Jim, I am very sorry to hear you have been suffering from burning feet and legs since 2012. So, let me understand what you are saying here. You have been to several doctors and not one of them has been able to help you, and not one of them has suggested it might be neuropathy? This mystifies me. They should have tested you for that the very first thing. I would suggest seeing a doctor, perhaps a neurologist, and requesting that they test you for small fiber and large fiber peripheral neuropathy. On google you can find out what tests are available, there are 3 that I know about. In the eight years that you have had this, what has been the level of your pain? What steps have you taken for the pain? Good luck to you, Hank
Neurologists in the area of Albany basically suck. I went to NYC to have biopsies done to confirm small fiber neuropathy. I also have burning and pain from Complex Regional Pain Syndrome in both feet and moving up my legs. I see a marvelous pain management doctor. I had a spinal cord stimulator implanted one in 2012 and a more up-to-date one in 2018 by a neurosurgeon. I have been seeing this pain management doctor for 9 years. I use lidoderm pain patches, lidocaine-prilocaine cream, as well as having a variety of procedures done that some have given me up to two years of pain relief.
Good evening I have CRPS, had spinal cord stimulus but leads Crack and would shock me on any movement, leg and foot pain getting worst. I never put in a device yet. What did you do 2 get relief for 2 years, am crying over here, can't sleep long even with my mess. Some days I just want to end my life I see no future for me. Am really a burden to my family. Please advise
Hello @neverrest, I am so sorry to hear that you are in such pain and not able to sleep much. Good sleep is so important for helping with your health. Are you able to discuss the pain and not being able to sleep with your doctor?
I'm wondering if you saw the suggestions in a reply to your earlier post by @amandaburnett in another discussion you posted in here – https://connect.mayoclinic.org/comment/244618/.
Hello @neverrest. The Connect community understands that you are in a difficult place right now and we want you to know that we are here for you. This is a safe place to talk as you feel the need. I also want you to know about the National Suicide Prevention Lifeline at 1-800-273-8255 that you can call any time for immediate help with trained counsellors. Please call them if you are feeling threatened by your feelings of ending your life.
Have you had a chance to review the suggestions by @amandaburnett and @johnbishop? When is the last time you have sought medical care for your pain and/or lack of sleep?
My pain doctor wants to implant a spinal cord stimulator too for my PN. Did you first have a temporary one before the actual implant?
Yes, I also had to have a psych review with psychiatrist. Currently I am on hold to have yet another trial and implant lower in my spine as my feet are quite painful – CRPS, SFN, and a couple of bad surgeries years ago.
Yes, a temporary and if it works the psych review and then the implant. So you are saying the temporary worked for you? And then the permanent implant also worked for you?
I had my first stim implanted in 2012 and my second in 2018. I had to have the psych review before the trial. I am looking at a third trial but my lawyer is going to fight Workers' Comp denial so I will be on hold for a while.
I do very much appreciate the stim! My last implant was not done as well as the first and I have learned to work with it. When I am in one position and set my remote, when I get out of that position things don't act the same, so I need to make another adjustment. I didn't have that problem with the first one. Because what I have doesn't cover my lower legs and feet well enough for me to be able to garden comfortably and only for a very short time as I use a garden bench, my pain management doc is going to do the trial lower in my back. If successful, he will also do the implant. The psych review wasn't any bother. Just be honest and positive about your need for relief to function on a better level.
Any luck? I have the same problem. I was born and raised in Albany, NY but now in GA. Can't get no answers. Went to a neurologist in 2020 and had therapy on my legs. Couldn't walk much after I had a Shingrix shot. Sick for 4 months. Disappeared as fast as it started, and now the legs and feet thing started AGAIN. Back to the neurologist and am going to have another nerve study and a MRI for my back but haven't had it yet.