My pain has largely subsided over the last two days. There still is some allodynia but it is mild to moderate and there is no constant burning, not even in feet.
Having a hard time getting to sleep. Some minor allodynia now but no static pain and some itchiness. I think I had too much caffeine too late. I’m trying to cut down because I’ve learned that caffeine increases blood glucose levels and I know it screws sleep sometimes. I have to be up at 4:45AM, going to get less than 4 hours if I get to sleep now, which isn’t likely to happen. Some left over day cruft is also hovering in my mind.
Neurologist things the thing going on with my hand is probably erythromelagia. It is often related to peripheral neuropathy according to http://www.erythromelalgia.org/whatisem.aspx
It’s been a week since my last Metformin increase, pain has dropped to zero tonight. Went to the gym and got a workout in.
Need to go to bed now as I have to be up at 4:45AM.
I’ve been referred to yet another doctor at Group Health, this one in physical therapy (who apparently also manages pain).
I’m glad I don’t have any STD’s, half the world would know since anything you say to one is available to all. There is no such thing as doctor-patient confidentiality there as near as I can tell.
I really don’t care though, I just want this pain resolved, however it has to happen.
I am SO frustrated with Group Health doctors who are completely unwilling to provide any meaningful treatment for pain.
Last night was my worst ever, felt like my spine had been plugged into a 220 volt outlet and every pain nerve fiber in it overstimulated.
I had burning all over my body, severe allodynia, and it took on a new property where if my wife touched my lower left leg, not only would I feel intense pain where she touched but also I’d feel the touch in my chest and throat. It is as if my entire nervous system were one big short circuit.
This in spite of 1200mg of gabapentin, 6mg of melatonin, 750mg of gaba, 325mg of aspirin, and by late in the morning a substantial amount of marijuana. But absolutely nothing was touching this pain and it was controlling me. I tell you if someone had offered me a bag of heroin I would have stabbed it in my veins or snorted it, the pain was that severe.
Yesterday I got chewed out by my neurologist for sending him too many e-mails. Well, I wouldn’t if he’d respond to them but in the absence of any response I just assume they went to >/dev/null.
Today I get e-mail from him suggesting my problem is that I need better stress management. I explained to him that my only substantial stressor at this time was the pain that he was refusing to manage effectively. I have a wife that loves me, lots of friends, at least two kids that still talk to me, I practice meditation, I pray, I belong to and attend a church, a good small church with people that actually care, I go to a Bible study and a men’s accountability group. Honestly, in terms of stress management I don’t know what I could be doing better.
This is making night time sleep and daytime functionality difficult to say the least.
I’m in less pain tonight, not pain free but not excruciating like it has been. I discovered melatonin helps with allodynia. So that’s a plus.
However, 9mg of melatonin later, and I still can’t sleep tonight. Itchy all over for one thing. Skin is very dried out. Mind just won’t slow down and take a break for another.
Last night, yesterday, and the night before all were bad. I had lots of neuropathy pain. Gabapentin even at the full dose isn’t stopping it. Gabapentin does tame down the burning but allodynia, where touch is perceived as pain, it does not help, and that has been severe.
I know the key to getting this pain down is exercise. But yesterday things hurt so bad that even the touch of the back of the car seat on my back when I drove to the post office resulted in searing pain.
My doctors at Group Health, both my primary care physician and neurologist, are not in the least bit helpful. They do not suggest any remedies, and when I research and find things and pass them by, usually they won’t even bother to read the descriptions and if they do I usually get something like, “I can not recommend this in this setting”, but they offer no alternatives.
So I am more or less trying things at random, doing my best to make an educated guess on whether something is likely to kill me or make things worse, and then be a lab rat, because I really can’t get any help elsewhere, nor can I live with this pain.
Prayers are appreciated.