4 years of hell, so far

[Rob-2014-01]

January 2014, noticed my right small toe felt somewhat numb and would burn at times when it got irritated by wearing shoes. About the same time period I noticed my feet would get very cold for no reason. Made appointment with my gp to find out what the issue is. The gp sent me to a neurologist for some conductivity tests. Test didn't find anything, most likely because those tests are for larger nerves, not the peripheral tiny nerves, pointless test if you have peripheral Neuropathy. Subsequent appointments included MRI on neck and lower back. Neck showed some issues but gp didn't think they were cause of the issue. The issue has spread since 4 yrs back til now to both feet, legs, arms, hands, face. Exercise seems to help, Wrong foods (sugar, carbs) seem to cause more issues, trying to stay away from those now. Didn't gravitate to any meds, trying to stay away from that bs. So here we sit, May 2018, feet get burning mostly on soles and toes when i wear shoes and have to walk for any distance. Thinking some neuro shoes may help that, just thinking at this point.

[Karjade]

One year ago I started to get numbness, tingling and burning in my feet also freezing cold feet. I went to the doctors and like you referred me to a neurologist and I had a nerve conduction test which revealed nothing. My doctor diagnosed peripheral neuropathy and prescribed Gabapentin but I hate taking them because of the side effects. Now a year on it has spread to the soles of my feet and now ankles and lower legs. It is very frightening especially not really knowing what has caused it. Have you found anything that has helped?

[Rob-2014-01 in reply to Karjade]

Well, being idiopathic there seems no cure for an unknown cause.

What does help me is:

1) don't wear shoes much, kind of gets in the way of life if you know what I mean

2) don't walk too much, be a couch potato with feets up in the air whenever possible

3) if feet do get "inflamed", dunk them in some cold water for 5 minutes and then all the burning goes away until time I have to wear shoes and walk again.

4) don't engage in eating any sweet things and don't add sugar to anything cuz that really McFucs you up.

5) do as much non impact exercise as possible, I have been to the YMCA 4 times this week and do 1 hr on elliptical trainer, also walk 5km in between work out days. My feet sting like hell after the walk but at least they hurt for a reason and I get some more exercise.

6) hoping I can find some shoes with padding and lots of toe room, that's my next mission.

What helps me might not help you , depends on the nature of the beast.

Good luck!

[Karjade in reply to Rob-2014-01]

I have an appointment again with a neurologist on the 29th May to see if anything more can be done. I have two dogs so I do quite a bit of walking but saying that I do suffer if I do too much. I use ice packs when my feet burn and a hot water bottle when they are freezing cold. I went to a podiatrist and she fitted me with inner soles which I wear most of the time but they can hurt the arches of my feet if I wear them for too long. I am in a couple of groups on Facebook for peripheral neuropathy and they give quite a few suggestions which help them but as you say everybody is different. I just feel I cannot live with this for the rest of my life and it is scary. Good luck to you as well and thank you for your suggestions which help you.

[Rob-2014-01 in reply to Karjade]

any luck today?

[Karjade in reply to Rob-2014-01]

Hi Rob. The neurologist has decided to do another nerve conduction test. He said if the Gabapentin does not work then stop them but I have decided to continue with them at a low dose. He said there is no cure for nerve damage only medication to help live with it. I told him it has got much worse since I saw him last time but he said he will discuss things after the nerve conduction test. This is all so scary and I wish I could wave a magic wand and it would all go away! Good luck to you and thank you for caring xx

[Hilsho47]

So sorry to hear of your problems - makes mine seem insignificant by contrast. I also find that exercise helps. Sitting and standing makes the pain much worse. I can't bear any pressure through my feet when sitting and have to put them up on a stool. Can only wear certain shoes - some make me feel sick when I put them on. Walking sandals are good in the summer.