Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@johnbishop

Hi Lynn @lynnaustin, some people have had trouble ramping up to the full dose of R-ALA. It has to be done slowly as in the instructions on the site for the supplement. The dosages have nothing to do with body size (IMHO). It's more about theuropeutic dosages for the different supplement.

Are you having difficulty navigating the website or the Facebook group. It might be hard to navigate the Facebook group and locate the Files section on a Mobile device. I've always used a computer to do that. The only supplement that I first had an issue with was the 1.5 oz of hemp oil every morning. Not a physical thing, it just made me gag trying to swallow it. I've gotten used to it now and can just swig it down. I've never had issues with the website because I only use the Products page – http://solutions2pnpd.com/products/ and the Instructions page – http://solutions2pnpd.com/instructions/. There's not much else on the website. All of the vital information and posts are in the Facebook group which admittedly is much easier on a computer – http://www.facebook.com/groups/spnpd

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Thanks I did get to look at testimonials. Your success has encouraged me to try it. There really isn’t anything else except meds. Just now realizing the seriousness of this disorder.

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@lynnaustin

Thanks I did get to look at testimonials. Your success has encouraged me to try it. There really isn’t anything else except meds. Just now realizing the seriousness of this disorder.

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Hi John . Just curious.. does your SFN give you any burning sensations or make it uncomfortable to put anything on your feet?
Lynn

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@lynnaustin

Hi John . Just curious.. does your SFN give you any burning sensations or make it uncomfortable to put anything on your feet?
Lynn

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Hi Lynn @lynnaustin, My feet always feel a little uncomfortable and kind of tingly but not burning or painful. I think it's because I have to wear 20mg to 30mg compression socks for my lymphedema in my legs. I do hate putting them on in the mornings and my feet feel better when I take them off at night but it does help with the swelling. Before I found out I had lymphedema a little over a year ago I didn't like tight socks or tight fitting shoes. I used to buy bamboo fiber socks because they are so soft and stretchy…easy on and off.

Is it uncomfortable for you to put anything on your feet?

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@johnbishop

Hi Lynn @lynnaustin, My feet always feel a little uncomfortable and kind of tingly but not burning or painful. I think it's because I have to wear 20mg to 30mg compression socks for my lymphedema in my legs. I do hate putting them on in the mornings and my feet feel better when I take them off at night but it does help with the swelling. Before I found out I had lymphedema a little over a year ago I didn't like tight socks or tight fitting shoes. I used to buy bamboo fiber socks because they are so soft and stretchy…easy on and off.

Is it uncomfortable for you to put anything on your feet?

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No I only feel some little quick jabs in my feet. I asked because I met with my neurologist this week and he told me my EMGs were fine and I do t have PN. I was confused and asked him about SNF and he said I don’t think you have that either because you don’t have any burning symptoms. Well I have prickling and stinging in my forearms so I asked for a biopsy. I have to wait till 10/15. He also commented that it makes no difference because treatment would be the same . I still want to know . I asked you because I was sure you didn’t have any burning but still have SFN.

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@lynnaustin

No I only feel some little quick jabs in my feet. I asked because I met with my neurologist this week and he told me my EMGs were fine and I do t have PN. I was confused and asked him about SNF and he said I don’t think you have that either because you don’t have any burning symptoms. Well I have prickling and stinging in my forearms so I asked for a biopsy. I have to wait till 10/15. He also commented that it makes no difference because treatment would be the same . I still want to know . I asked you because I was sure you didn’t have any burning but still have SFN.

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I'm wondering if the prickling and stinging in your forearms might be associated with carpal tunnel syndrome? I also have that in my hands. The left is worse than the right and sometimes when I sleep on my sides at night the hands and arms will get that prickly stinging feeling but I can usually shake it off within a few minutes. I was tested and diagnosed with severe carpal tunnel in my left wrist and had a shot but it didn't help much. They offered surgery but I wanted to hold off since I was more afraid of making it worse and it's not that bad right now.

Massachusetts General Hospital – Numbness and Tingling
https://www.massgeneral.org/ortho-hand/conditions-treatments/numbness_and_tingling.aspx

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@johnbishop

I'm wondering if the prickling and stinging in your forearms might be associated with carpal tunnel syndrome? I also have that in my hands. The left is worse than the right and sometimes when I sleep on my sides at night the hands and arms will get that prickly stinging feeling but I can usually shake it off within a few minutes. I was tested and diagnosed with severe carpal tunnel in my left wrist and had a shot but it didn't help much. They offered surgery but I wanted to hold off since I was more afraid of making it worse and it's not that bad right now.

Massachusetts General Hospital – Numbness and Tingling
https://www.massgeneral.org/ortho-hand/conditions-treatments/numbness_and_tingling.aspx

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No EMG ruled it out. I read that prickly and stingy feelings are symptoms of SNF. I’m pretty sure I have it . Than you anyway.

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@johnbishop

I'm wondering if the prickling and stinging in your forearms might be associated with carpal tunnel syndrome? I also have that in my hands. The left is worse than the right and sometimes when I sleep on my sides at night the hands and arms will get that prickly stinging feeling but I can usually shake it off within a few minutes. I was tested and diagnosed with severe carpal tunnel in my left wrist and had a shot but it didn't help much. They offered surgery but I wanted to hold off since I was more afraid of making it worse and it's not that bad right now.

Massachusetts General Hospital – Numbness and Tingling
https://www.massgeneral.org/ortho-hand/conditions-treatments/numbness_and_tingling.aspx

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@johnbishop, @lynnaustin, So here I go, chiming in again. With all the needlelike pain in my hands, the knee and shoulder guy thought it was a neck issue, neck guy wanted to rule out carpal tunnel and sent me to the hand guy.

Hand guy was adamant that it wasn’t carpel tunnel. So they had a confab and the neck guy won. However, at the time, the knee & shoulder guy was getting ready to do some shoulder repair after a fall down the stairs.

I guess the three of them went out for pizza. The next day the neck guy called me and said that the cervical surgery was going to be done first ASAP and then the shoulder and then the hand if there was anything left to fix. I felt like Humpty Dumpty being put back together again.

Fast forward two years later and the hands were quite uncomfortable.

Neurologist, the new guy, wanted to rule out….you guessed it…..carpel tunnel. Hand guy said something like, how many times do I have to say this……,

So the neurologist charged ahead with the skin biopsy and SFN was uncovered. I did appreciate the transparency and the tenacity. I think they all played on the same team in the end. It is your chuckle for the day. Enjoy the evening. Chris

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I have sfn and beginning stages of autonomic neuropathy. I started out with tingling in my legs and feet, and over the course of a few years burning pain got bad. I had a Burst DR spinal cord stimulator implant two years ago after trying every medication. Some of the meds did nothing and others had bad side effects. I have enough shoes for 6+ men, and I'm weeding out any that hurt my feet – usually ones that have too narrow toe beds. I have played with a bunch of insoles, and I buy shoes that are roomy to allow for an insole or two. I've found that Clark's and Dansko work well.

I have a blanket lifter that keeps the bedding off my feet, and I have a pillow for my feet. The pain is worst on the balls of my feet, but the tops hurt as well. And sometimes my big toes are the most painful.

The pain is partly a burning, but it also feels like my feet are being stabbed. Of course, walking makes them hurt, and standing still is painful. I never go barefoot for two reasons – it hurts, and because of numbness, I could step on something sharp and not know it.

It was wonderful when I got the stimulator implant. It gave me such relief from the pain. I wish that it were still effective. It still helps, I'm sure, but I have up to level 8 part of the time most days. I don't know what the next step will be.

The only medication that I can tolerate and that helps with the pain is morphine sulfate contin, and my PCP has told me that he won't increase the dosage, even though I only take 2 or 3 15mg a day. I used to take 30mg 3 times a day, and a year or so ago, I tapered off it, to see if it was really doing anything. I didn't stay off it more than a few weeks. It was definitely reducing the pain! I went back on it, but only went up to 45mg a day, half of what I had been taking. If I'm not on my feet much, I don't take the midday pill. But if I don't take it on busy days, I regret it.

The evaluation process can be frustratingly slow, and I've learned to ask lots of questions and do a lot of online research. I've also learned that I have to speak up and be my own advocate.

Jim

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@artscaping

@johnbishop, @lynnaustin, So here I go, chiming in again. With all the needlelike pain in my hands, the knee and shoulder guy thought it was a neck issue, neck guy wanted to rule out carpal tunnel and sent me to the hand guy.

Hand guy was adamant that it wasn’t carpel tunnel. So they had a confab and the neck guy won. However, at the time, the knee & shoulder guy was getting ready to do some shoulder repair after a fall down the stairs.

I guess the three of them went out for pizza. The next day the neck guy called me and said that the cervical surgery was going to be done first ASAP and then the shoulder and then the hand if there was anything left to fix. I felt like Humpty Dumpty being put back together again.

Fast forward two years later and the hands were quite uncomfortable.

Neurologist, the new guy, wanted to rule out….you guessed it…..carpel tunnel. Hand guy said something like, how many times do I have to say this……,

So the neurologist charged ahead with the skin biopsy and SFN was uncovered. I did appreciate the transparency and the tenacity. I think they all played on the same team in the end. It is your chuckle for the day. Enjoy the evening. Chris

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@artscaping Just came on after a sleep and saw your post. I am not quite awake yet, but your post gave me a chuckle. You put it in a humorous way exactly what I am experiencing . One more doctor, one more diagnosis and I am going to start over with a new crew. Thank you. I needed that this morning.

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I have a question for anyone who might answer. I am told that my extreme foot pain is Mortons Neuroma. I believe this diagnosis. I alsohave so many other painful problems including peripheral neuropathy fibromyalgia and pus swelling in my left leg especially. I have had a crew of doctors all telling me something different. However, this podiatrist seems to have hit upon something. I have the large Adams Family Shoes and inserts and I ice. I was first given the med pack (steroid) oral 5 day pack and it help so much to bring the inflammation down which decreased the pain for a short time. He is adament about me having the cortisone shot in my foot. Have I agreed yet HECK NO. One of the most painful shots. I had two in my knee and swore never again anywhere and now foot. One of the crew doctors said surgery will take care of it with no problem saying that it has not been diagnosed and treated for such a long time that it is too severe for less invasive treatment. I have not talked to the podiatrist about this but I believe and agree he wants to avoid surgery I get so upset because here is another avenue of pain and the thought of self inflicted (cortisone shot) I do not want

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@artscaping

@johnbishop, @lynnaustin, So here I go, chiming in again. With all the needlelike pain in my hands, the knee and shoulder guy thought it was a neck issue, neck guy wanted to rule out carpal tunnel and sent me to the hand guy.

Hand guy was adamant that it wasn’t carpel tunnel. So they had a confab and the neck guy won. However, at the time, the knee & shoulder guy was getting ready to do some shoulder repair after a fall down the stairs.

I guess the three of them went out for pizza. The next day the neck guy called me and said that the cervical surgery was going to be done first ASAP and then the shoulder and then the hand if there was anything left to fix. I felt like Humpty Dumpty being put back together again.

Fast forward two years later and the hands were quite uncomfortable.

Neurologist, the new guy, wanted to rule out….you guessed it…..carpel tunnel. Hand guy said something like, how many times do I have to say this……,

So the neurologist charged ahead with the skin biopsy and SFN was uncovered. I did appreciate the transparency and the tenacity. I think they all played on the same team in the end. It is your chuckle for the day. Enjoy the evening. Chris

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Makes me feel a little better about my circus!

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@summertime4

I have a question for anyone who might answer. I am told that my extreme foot pain is Mortons Neuroma. I believe this diagnosis. I alsohave so many other painful problems including peripheral neuropathy fibromyalgia and pus swelling in my left leg especially. I have had a crew of doctors all telling me something different. However, this podiatrist seems to have hit upon something. I have the large Adams Family Shoes and inserts and I ice. I was first given the med pack (steroid) oral 5 day pack and it help so much to bring the inflammation down which decreased the pain for a short time. He is adament about me having the cortisone shot in my foot. Have I agreed yet HECK NO. One of the most painful shots. I had two in my knee and swore never again anywhere and now foot. One of the crew doctors said surgery will take care of it with no problem saying that it has not been diagnosed and treated for such a long time that it is too severe for less invasive treatment. I have not talked to the podiatrist about this but I believe and agree he wants to avoid surgery I get so upset because here is another avenue of pain and the thought of self inflicted (cortisone shot) I do not want

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@summertime4 I think I'm with you on the cortisone shot mainly because I think it may only be a temporary solution. I've had 2, one in my knee before I had a replacement that lasted about a week of no more pain…mainly because I kneeled down on concrete which I should not have done. The second shot I received in my left wrist for carpal tunnel and it did nothing for me. Are you able to sit down with the doctor and go over the pros and cons of surgery and if there are additional options besides surgery and a cortisone shot?

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@johnbishop

@summertime4 I think I'm with you on the cortisone shot mainly because I think it may only be a temporary solution. I've had 2, one in my knee before I had a replacement that lasted about a week of no more pain…mainly because I kneeled down on concrete which I should not have done. The second shot I received in my left wrist for carpal tunnel and it did nothing for me. Are you able to sit down with the doctor and go over the pros and cons of surgery and if there are additional options besides surgery and a cortisone shot?

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@johnbishop Thank you for replying. No I haven't really sat down with the doctor. He does seem gun hoe on the shot which of course I am not. I see him next week and will talk with him. Some people tell me the cortisone shot fixes it. To me it is also a temporary fix. I had carpel tunnel surgery years ago and have not had a problem since that time. My other wrist is giving some signs, but right now have to deal with the swelling and foot. I have been to the store for a bit and am now of course on the computer with my foot on ice ad it feels pretty good. Maybe if I can get the neuropathy pain under control my foot won't hurt so bad. I will take your advise and talk with doc. I have a feeling that Medicare will not pay for surgery until all other resources are used to no avail. I know they will not pay for an MRI until an Xray is done first. They are wasting our money because xrays miss so much. I am also dealing now with the nodules found on my thyroid 3 years ago being larger this ultra sound and a new one. This just came in yesterday so doctor won't see until Tues because of the Holiday.. Just added that because I have not told anyone and I think I am concerned although I tell myself not to until the doctor sees it.. I also have nodules on my lungs and will be scheduling a CAT scan next week to see if they are stable. Yikes and now worry about sticking a BIG BAD NEEDLE in my foot. I will be in Church early tomorrow for sure. Thank you everyone. I talk more to you than to my family.

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@summertime4

@johnbishop Thank you for replying. No I haven't really sat down with the doctor. He does seem gun hoe on the shot which of course I am not. I see him next week and will talk with him. Some people tell me the cortisone shot fixes it. To me it is also a temporary fix. I had carpel tunnel surgery years ago and have not had a problem since that time. My other wrist is giving some signs, but right now have to deal with the swelling and foot. I have been to the store for a bit and am now of course on the computer with my foot on ice ad it feels pretty good. Maybe if I can get the neuropathy pain under control my foot won't hurt so bad. I will take your advise and talk with doc. I have a feeling that Medicare will not pay for surgery until all other resources are used to no avail. I know they will not pay for an MRI until an Xray is done first. They are wasting our money because xrays miss so much. I am also dealing now with the nodules found on my thyroid 3 years ago being larger this ultra sound and a new one. This just came in yesterday so doctor won't see until Tues because of the Holiday.. Just added that because I have not told anyone and I think I am concerned although I tell myself not to until the doctor sees it.. I also have nodules on my lungs and will be scheduling a CAT scan next week to see if they are stable. Yikes and now worry about sticking a BIG BAD NEEDLE in my foot. I will be in Church early tomorrow for sure. Thank you everyone. I talk more to you than to my family.

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@summertime4 My wife and I have had multiple cortisone shots, with some working for a short time, others not helping at all. And yes, they're painful, but when they help, they're a Godsend. Has a doctor mentioned synvisc injections? They're less toxic than cortisone.

Are your feet numb? If so, you might find that a shot there wouldn't hurt, at least not as much. I had a muscle biopsy, which was a series of punctures, beginning at the waist and moving downward. While the needle was in I had to flex that muscle. Talk about painful!!

But the last one was in the top of my foot next to my toes. I didn't feel that one at all. That was kinda concerning.

Jim

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@jimhd

@summertime4 My wife and I have had multiple cortisone shots, with some working for a short time, others not helping at all. And yes, they're painful, but when they help, they're a Godsend. Has a doctor mentioned synvisc injections? They're less toxic than cortisone.

Are your feet numb? If so, you might find that a shot there wouldn't hurt, at least not as much. I had a muscle biopsy, which was a series of punctures, beginning at the waist and moving downward. While the needle was in I had to flex that muscle. Talk about painful!!

But the last one was in the top of my foot next to my toes. I didn't feel that one at all. That was kinda concerning.

Jim

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@jimhd @summertime4 Synvisc shots are specifically used to replace the synovial fluid in knees. Some doctors do use it off-label, but from what I understand, it is just for arthritis where that fluid is depleted. I had it in my knees before finally having 2 TKRs.
I have also had cortisone in my knees before synvisc, in my hips for bursitis, and in a shoulder. After a couple of shots in my shoulder the problem resolved. It always did help with everything except the bursitis, many doctors simply don’t hit the right spot. I finally found a doctor who gets it right every time though, and that’s all I go to him for because he’s sort of inconvenient.
I never found cortisone shots to be painful but the synvisc ones can be. The needle is a larger gauge because synvisc is a gel. I did get used to them though.
JK

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