Two and a half weeks ago I got a COVID-19 test, and it finally came back, negative for both PCR and antibodies. So, it’s pretty unlikely that I have or ever have had COVID-19, which means that’s probably not at the root of my recent health issues.
One and a half weeks ago I finally got a followup, proper sleep study, which found that while I do have occasional apnea events, it’s not to the extent that CPAP treatment is warranted or even beneficial. Which is unsurprising; even when I was using CPAP I never found it to be very helpful, and this diagnosis means that I do not have access to my current provider’s DME1 so I can’t, like, get my equipment refreshed.
So now I have this giant, expensive brick taking up space in my bedroom. I should see what recourse I have for selling it. One rather frustrating thing about all this was that while CPAP seemed to be potentially helpful at first, it very quickly wasn’t, and at Kaiser I had the sleep doctor insisting that CPAP Cures Everything while the nurses were like “hey maybe this isn’t helping, hold off on using it for a while,” and then while I was holding off on using it the short-term rental automatically converted into a purchase while I was in the middle of trying to get a proper rediagnosis (which never came anyway). So I was using the CPAP out of obligation towards it, even though it wasn’t helping anything.
And of course the main reason I wanted to address my sleep issues is that better sleep should help me with my fibromyalgia, right? The treatment for that has been going pretty poorly too. My baseline pain level is still pretty horrid. Nortriptyline doesn’t make the pain go away, although if I decrease my dose it sure as heck comes back a lot. Gabapentin is similar, except it also causes severe constipation and death poops since it seems to paralyze my bowel. Lately I’ve been trying taking it all at bedtime instead of spreading it out during the day, with the hope of it helping me to sleep better while still letting my poop chute function. It still seems to have the same (marginal) effectiveness on my pain and my gut at least is back to making noises, although I’m still not quite, y'know, regular yet.
So, that’s fun.
Meanwhile I’m getting pretty frustrated with my recent healthcare experience, especially around this shoulder issue. It started on May 22. The pain was so severe I went to the ER thinking I was dying. They made sure I wasn’t dying, then told me I was probably just stressed and sent me home. Over the next couple of weeks I made appointments with doctors to try to figure out what was going on, and they all told me I was probably just stressed and gave me muscle relaxants (which didn’t help).
Eventually I got referred to physical therapy, and the PT started out telling me I was probably just stressed and started to give me a lecture on how chronic pain works, never mind that I know the difference between chronic and acute pain, and this particular issue was very much acute pain on top of my existing chronic pain. So finally he agreed to let me come into the office for a direct physical treatment and it became immediately clear to him that there was in fact some sort of physical issue going on, but he couldn’t quite figure out what it was. (The best theory was a torn rotator cuff except that’s turned out to not be likely.)
So, iet’s been nearly two months of this, and what was acute pain has probably turned into, guess what, more chronic pain.
In the meantime I sought out a new rheumatologist, who told me that this wasn’t a rheumatology thing and referred me to a pain clinic, and the pain clinician just talked over me and autocompleted all of my answers to his questions, and signed me up for a pain management seminar (like the one I did a year and a half ago), which is also fully booked until September and which I also don’t think will actually, you know, help me.
I asked him about actually getting a physical diagnosis for the actual physical underlying cause, and he ordered some x-rays to make sure it wasn’t a problem with the joint, but there’s still been no soft-tissue scan, and of course the x-ray came back showing no bone problems, but I literally? never? suspected a bone problem? and maybe could doctors actually fucking listen to me about this?
I am always so frustrated by doctors not listening to patients regarding symptoms. I feel like the entire medical profession is built on gaslighting people who are already suffering. It’s so infuriating.
Anyway, since then, the physical therapist tried some deep-tissue massage and that helped somewhat. Then he went on parental leave, so I’m getting a new PT starting today. Hopefully they’ll be able to continue things in a positive manner.
Meanwhile, my fucking insurance keeps on sending me things to fill out about whether this pain was caused by an on-the-job accident and should it be covered by a different insurance than them, and even though it’s been the same course of treatment for the last month and a half they still seem to think that I might not be telling them everything they need to know (namely reasons for them to reject the claims). How many more times do I need to tell them that this is treatment for chronic pain due to fibromyalgia and not a worker’s comp thing? Ugh.
At least the specific shoulder pain is slowly subsiding. Not enough that I feel confident enough to start playing music again, but I’ve been able to (lightly) resume Ring Fit Adventure at least (and holy heck am I out of shape).
Durable Medical Equipment, the folks who provide consumables for things; in the case of CPAP machines, masks and hoses and filters and the like. ↩