the_rck: (Default)
Apparently changing our AC setting from 76F to 77F makes my pain levels and my ability to sleep much, much worse. I nudged the thermostat about nine days ago and took it back down again Sunday night when I realized that I felt a bit better every time the AC kicked on. Also, I wanted to stand under the shower as cold as I could take it and never come out because the cold helps my joint aches.

Thursday night, Friday night, and Saturday night were all the sort of sleep where I woke every 15-30 minutes because I hurt and needed to change position. Naproxen and Tylenol didn't help, and Sunday was awful. I had trouble getting too and from the bathroom due to the pain.

Monday, I felt vastly better. I had had a decent night's sleep, and I'd gone from almost a 9 down to something closer to 7. I still spent a couple of minutes with the shower as cold as it goes. Warm/hot water doesn't make anything worse, but the cold makes things briefly better. My body temperature doesn't seem to be fluctuating at all, and nothing's red or swollen, but every joint and muscle aches.

I have a rheumatology appointment later this month. I'm hoping they'll be useful; I'm not holding my breath, but it would be amazingly nice to have any sort of map of the prognosis. I don't think they're going to offer anything at all that will be useful for the pain (my long, long list of things I can't take means coming up with a safe medication is difficult).

Also, it's at least 50% that they shrug and say, "Well, fibromyalgia. Go lose weight. Exercise more."
the_rck: (Default)
We got back the additional genetic testing results to see what analgesics are the best match for me. The results are not particularly surprising except that there are a couple of things that are supposedly good that I’ve have problems with. My psychiatrist recommended that I share the results with my primary care doctor pretty much immediately. I will probably wait until after the holidays because I don’t expect that she’d get the message before the 2nd anyway.

I have 'reduced efficacy’ with all of the opioids that I’ve ever been given and major issues with meperidine (Demerol) and methadone (both have reduced efficacy *and* high serum levels meaning that lower doses are required. Methadone also has a considerably higher risk of side effects for me). I haven’t ever heard of any of the ones that are supposedly safe, genetically speaking— buprenorphine, buprenorphine/naloxone, naltrexone, and tapentadol.

I’m heterozygous for a mutation called 118A>G on the OPRM1 gene. That means 'moderately reduced analgesia with standard opioid doses.'

As far as NSAI, the only one considered safe is Toradol which I’ve reacted badly to. Naproxen is listed as having 'moderate' gene-drug interactions. Ibuprofen, Celebrex, and Voltaren (and something called Mobic which may or may not be a NSAI. The category is merely labeled as 'non-opioid'), all have major interactions. Celebrex and Voltaren actually have FDA warnings that they’re bad with my specific genotype.

So I guess it makes sense that I’ve turned to naproxen, out of all the NSAI, as the least evil. Of course the only type of pain it reliably helps with is menstrual stuff. It does zero for anything else, and I’ve mainly taken it because, if I don’t, doctors refuse to consider my pain real.

In the non-opioid category, carisoprodol and Flexeril are listed as safe. I took carisoprodol for years. It didn’t noticeably do anything at all except freak out any new doctors that I saw. Stopping it also didn’t do anything noticeable. Flexeril, I’ve tried twice. Once, my pain got better, and once, my pain got worse. I think that that may have had more to do with my pain in the latter case being a somatic expression of my anxiety levels than anything else. I’ve had problems sometimes with things that relax me in terms of my body responding by getting tenser in response to me feeling like I’m losing control (the first two or three times I had alcohol were unpleasant in that way, and I’m pretty sure that’s the problem I had when they gave me valium for muscle spasms).

I’ve been poking at the Arthritis Foundation website as a starting point for researching alternative treatments for the arthritis in my hands. A lot of the things listed either have really sketchy research or are firmly in the not-safe-for-me category. SAM-e looked really appealing to try until I hit the part about stomach and intestinal issues and about not being safe with MAOIs (I’m not currently taking one, but I probably will be in the not too distant future). I’m so very sensitive in that direction that I certainly would get them. Then there’s DMSO that’s not safe for people with asthma and flaxseed that’s not safe for people with hormone positive reproductive cancers (which is new information for me). Fish oil is probably safe, but when I tried it, a few years back, I was constantly burping vile tasting stuff.

I’ve got several things that I want to research further. I will probably try topical capsaicin if we can find it without going out of our way. It may or may not help, but I’m a lot less worried about something topical and that I know what it is and where it comes from. Eating stuff with capsaicin gives me nasty reflux, but I’ve never had issues from touching it. I’ll test it somewhere other than my hands, though, because, if I get skin irritation, I don’t want it there. I may also try ginger supplements (though I want a bit more information about them). That’s another case of me actually knowing what it is. I don’t have a bad reaction to dietary ginger, so that seems potentially safer to experiment with.

The night time braces felt good for my hands at first. I really liked the support for the painful part of my hands. Sadly, my left hand started going numb after about fifteen minutes of me lying on my right side. I’m pretty sure that it was a combination of the position with the brace. I’m just not sure that it’s worth trying to figure out (and get used to) a different way of sleeping given that my hands don’t hurt at night or first thing in the morning. Also, I can’t put the dratted things on without help. I can take them off, but I can’t put them on.

The day time braces give less support than I want. I think that the sizing is right— or at least okay— in the wrist and general hand width, but it’s all kind of loose around my thumb which is where it’s supposed to be most supportive. There’s no way to tighten that, either. There’s also a strap that goes between my thumb and the rest of my fingers that digs in and hurts. That gets worse the longer I wear the dratted things.

So I want some hybrid of the two. I can’t do things like brush my hair or pick things up with the night braces, but they feel better. I can do a lot with the day braces on, but they don’t give me any real help. Not ideal.
the_rck: (Default)
Damn. What I thought was tendinitis is actually arthritis, so I can expect the problems with my hands to get worse over years rather than better over weeks.

I have two new sets of spica splints, one for day and one for night because arthritis in the particular joint where I have it destabilizes a bone, the bone between the base of the thumb and the wrist. That moving is the source of a lot of my pain. Of course, I’m supposed to keep moving as much as I can while still using a splint to keep that bone in place.

Treatment, apart from the splints, would normally include NSAIDs, but first off, those don’t help my pain, and second, they’re on the list of things that my body is genetically predisposed not to metabolize properly. So it’s heat and hoping at this point. They can do steroid injections, but there’s a limit of two (I think per joint) in a lifetime. The PA said that, if I get to a second injection, they’ll already be scheduling surgery. The surgery for this involves removing a bone and filling the space with tendons harvested from elsewhere in my body. They don’t like to do it because it tends to weaken the hand, but many people who have the problem find their hands stronger after the surgery simply because things were so bad before.

I’m not keen on the surgery, but I’m 49, so it may well happen eventually. Right now, I’m having trouble with mugs of tea, books (including paperbacks), and typing. Oh, and opening jars and using a can opener and stirring things and writing anything by hand. The idea that this is going to be with me permanently almost makes me cry.

The PA says there’s no research showing benefit from glucosamine but that, if it wouldn’t interfere with my other medications, she saw no reason not to try it as some patients find it helpful. The Mayo Clinic page on glucosamine interactions gives me the impression that there may be issues for me because of the problems I already have with metabolizing medications along certain pathways. I’m not willing to give up either Tamoxifen or Singulair, both of which are already on the borderline because I’m genetically predisposed to metabolize them poorly.

All of the listed things are 'may' be problems instead of being expressed with more certainty, but the list is kind of long and scary. I just can't tell if that 'may' means 'there's some evidence but no research' or 'we have no idea, so we're going to list everything we can think of that might, even theoretically, be a problem.'

February 2023

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