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5:43pm September 21, 2014

dendriforming:

Peripheral neuropathy rates are elevated (about half of us in two different studies) in people with CF. Basically nobody talks about this. It’s a relatively recent finding, which is part of it. Also, there are people with CF who really don’t like the thought of anything neurological being involved.

I have a hard time talking about it, because it’s a kind of pain that doesn’t feel like other things I call pain. So I’m reluctant to call it pain most of the time. I’ll fall back on just thinking I’m lazy, because I can’t map words to the sensation, so I can’t feel like it’s legitimate.

It’s bad today, though. Ativan usually helps, but I’ve already taken a dose today, and I’m cautious about taking another.

I have either peripheral neuropathy or central pain, and as far as I know I was born that way (my first memories of feeling my body at all involve this kind of pain, around the age of two).  Most people with either type of pain have trouble referring to it as pain, because it’s so different from any other type of pain sensation, and responds differently to stimuli than other types of pain.  Most people are far more likely to describe it in terms of debilitation than in terms of pain, if they describe it at all.  Like it’s easier to say “I used to be able to do something, and now I can’t” than it is to say “this is pain and that prevents me from doing it”.  Because neuropathic pain is just weird.

Also, neuropathic pain doesn’t respond very well to traditional pain meds.  Things that treat seizures seem to treat it better than anything else.  I’ve found Neurontin, Lyrica, Trileptal, Ativan, and Kava Kava (the last in very very large doses, like the kind that you have to grind up root and make a drink out of it, not the pill-sized doses they sell in stores – not even close to the same dosage, but unfortunately my gastroparesis makes kava impossible now…kava is also the only thing that’s ever treated my sensory overload to any degree) to be the only things that make much of a dent in it.  

Oh one really weird thing that I don’t recommend but I found it interesting – when I was on Lithium due to a misdiagnosis of bipolar (from a reaction to Wellbutrin), that treated the neuropathic pain as well.  I’ve never heard of that, but it’s interesting.  Obviously Lithium is way too high-risk a drug to use for such purposes alone, but I’m curious how many people react like that to it who have neuropathic or central pain.   And why.  (And why lithium and anticonvulsants both seem to treat bipolar really well, and treat neuropathic pain really well.)