Peripheral Neuropathy

[kalamazoo]

Does anyone else have peripheral neuropathy? I do have insulin resistance that has only recently been under control but my neuropathy has been getting worse. My feet are always cold and any change in temperature drives me nuts. When I try to go to sleep my legs tingle and burn and ache and it's hard to fall asleep. Anyone else experience this?

[Guest KiminOrlando]

I do and I'm on Gabepentin for it. I think I've been on it for 10 years. I was on Lyrica at first, but it made me gain weight so quickly that I got off of it after about 3 months.

[kalamazoo]

How much does it alleviate your symptoms and prior to treatment did you  get a lot of leg pain? I get a lot of leg pain all throughout my legs, kind of dull and achey and random but i get pain maybe once an hour in different spots. I'm hoping it is the cause but I worry.

[Guest KiminOrlando]

I rarely have the leg pain, but I had the burning and the tingling. The leg pain is not helped by the Gabepentin, but it only happens a couple of days a month, so I just put up with it. I don't know what else to do. The burning was the worst for me. I would actually get out of bed to put water on my feet, but it didn't help. It was like walking on hot pavement that you could never get off of.

Now, I had medication induced peripheral neuropathy that was so severe I felt like someone was taking a knife and runing the blade down my arms and legs non-stop. Nothing helped that but morphine. It took 9 months for it to completely go away. That was the worst 9 months of my life.

Have they done the nerve conduction test where they stick needles in your leg? The needles have wires and they run some kind of current through it. I can't remember what it is called.... EMG maybe?

 

[kalamazoo]

Did you have the leg pain prior to treatment? And I've had EMGs in my hands and they were fine, the issue is mostly in my legs. I think I need to get them in my legs. 

[Guest KiminOrlando]

Yes, I had it before my medication induced disaster.

The burning and tingling are more constant for me. I also get numbness in my toes. I'm in bed right now and my feet feel hot, but I know they aren't really. My toes are starting to get numb. 

One time when I was post op my leg pain got bad enough they checked me for blood clots. I guess because we are more sedentary than most people our age we are at a higher risk for DVT. Luckily everything was clear.

I've also had a Doppler study on my legs to check blood flow. Everything was 'normal'. 

I could increase my Gabepentin but it makes me groggy so I don't like to take any more than I absolutely have to.

It is a little strange to watch a neurologist poke your toes with a pin and only vaguely feel something. My brain told me it was going to hurt, but it was like it was happening to someone else. 

I never really connected the leg pain with this because I also have Rheumatoid Arthritis and Lupus. Have they checked you for Restless Leg Syndrome? That can manifest as pain.

[TCP]

I have peripheral neuropathy and no diabetes. It came on when POTS did 10 years ago. Some say mine is from the blood pooling or could be small fibre neuropathy.  It is intense burning in the skin and deeper nerve pain. My neurologists refused to check for SFN. 

I am on Nortriptyline and Gabapentin. I keep legs elevated. Cut out all sugars, no cigarettes or alcohol. Keeping calm is vital.