Living with Neuropathy - Welcome to the group

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.

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

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?

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.

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

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.

@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

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

@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.

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