[baba222]

Anyone out there able to make it without Neurotin or Lyrica?
If so, what is your regimen?
Thank you.

[zkrp01]

Hi baba, I saw no relief from Gabapentin (generic for heurontin if I am correct) so I am weaning down from 900mg/d. I will see if I start suffering more. My thoughts are if I saw no relief in the first place, why risk all the downsides I have heard about? I will be able to say how its going later on. Will take 21 days to get to zero. Good Luck Ken in Texas.

[hopeful]

I have made it without either. I couldn't take them. Right now I use tramadol for pain. Also my rheumo put me on Wellbutrin. He said it works on pain. I'm still not sure. I will take a Percocet if I'm having a really really bad day.
I've been having a bad time so I am starting up my IVIG again. The cold weather is coming back. I struggle when it is cold or even really cool.

[janieg]

You are also very sensitive to being cold? Is that a rather common thing with SFN?

Originally Posted by hopeful

I have made it without either. I couldn't take them. Right now I use tramadol for pain. Also my rheumo put me on Wellbutrin. He said it works on pain. I'm still not sure. I will take a Percocet if I'm having a really really bad day.
I've been having a bad time so I am starting up my IVIG again. The cold weather is coming back. I struggle when it is cold or even really cool.

[Dr. Smith]

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[mrsD]

Super sensitivity to cold implies thyroid malfunction, or cryoglobulemia... which is an over production of some peptides from the bone marrow, which thicken the blood especially when cold. This is not very common, and can be tested for.

These thickened peptides dissolve and thin out in warmth.

I noticed my cold tolerance improved when I used steroids temporarily for my spinal pain attack/strain. I wonder now if I have some adrenal fatigue thing going on? It was down to 50 and mid 40's at night and in the morning many days this summer on vacation!

[januarybabe]

Originally Posted by mrsD

Super sensitivity to cold implies thyroid malfunction, or cryoglobulemia... which is an over production of some peptides from the bone marrow, which thicken the blood especially when cold. This is not very common, and can be tested for.

These thickened peptides dissolve and thin out in warmth.

I noticed my cold tolerance improved when I used steroids temporarily for my spinal pain attack/strain. I wonder now if I have some adrenal fatigue thing going on? It was down to 50 and mid 40's at night and in the morning many days this summer on vacation!

I noticed my tolerance to cold was better with steroid injections in spine. The injections did not help with pain.

I told guy at pain clinic about this and he said hot flashes were a side effect of the injections.

[hopeful]

Originally Posted by janieg

You are also very sensitive to being cold? Is that a rather common thing with SFN?

Yes I am. The winter is really hard for me. I don't go out much and try to keep warm.

I have tile floors in certain rooms in my house. I have already started to need my slippers or I can't walk on it.

[mrsD]

I wore leg warmers, thick socks and long pants to bed every night upNorth this summer. (no heat there). I have never had to do that before. (it was very cold up there and windy many days).

Near the end when my back flared up, I was on 10mg of pred daily orally and I noticed a distinct improvement in stamina and
walking ability (going to the outhouse is a long walk). When my son came up to drive me home (I didn't think I could manage the long drive alone)... he was stunned at how cold it was. By then I was rather immune to it, or it was the pred. I think it was the pred.

[nilram]

No. But I don't have very bad side-effects from Neurontin. Now on Gralise, a time-release gabapentin (neurontin).