pain management stuff

[ysobel]

Welp. Pain management clinic (excuse me, pain intervention center) appointment was today. It was ...whelming.

On the plus side, a) I got a lot of compliments on the prettiness of my "mark the location of pain" figure (which I had color-coded, headaches vs nerve pain vs definitely-due-to-heterotopic-bone pain vs unspecified-cause joint pain), b) they listened to me and stuff (though they did call me an inspiration), and c) I do have some ideas for where to go.

On the minus side, with one exception the ideas consist of "take more vicodin" (and stop being worried about acetaminophen toxicity because as far as that is concerned I could take 9 pills per day and still be at safe levels of acetaminophen ... not that they told me to jump to 9 though) and "take less ibuprofen if possible" (not stop it altogether necessarily but take less of it), and, uh, yeah. They didn’t want to start me on opioids, even like fentanyl patches which I was on for short term use once before, which I understand the reluctance but dammit I just wanted better drugs D:

The exception is that they gave me an referral to talk to an external pain center doctor about the possibility of using, uh, *checks notes* suboxone? which googling suggests is a combo of buprenorphine and naloxone, used primarily for treating opioid addiction but (they said) can be a sustainable long-term pain treatment option. But apparently you have to have a special license to prescribe it, hence the referral.

...except even if I get an appointment any time soon (my stepmom, driving me back, was all "so it sounds like it may take a few weeks" and I just kind of "..."ed and then muttered "weeks? you’re adorably optimistic") and even if they okay the use of suboxone for someone not in treatment for addiction, it will probably be a pain in the ass to get on a regular basis (tbh part of the reason I'm not taking as much vicodin as prescribed is because of what a pita it is now to get more, and fuck the whole war on drugs already) and

okay tw for suicidal ideation

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...I had a fleeting thought on the way home of "I can't continue like this", not with this amount of pain (and I feel like a wuss because it only averages out at a 5 or 6 and some of my friends deal with so much more) and with the problems getting appropriate treatment

and of course it's not true and I can, but it's still discouraging

Comments

[azurelunatic]

Chronic pain is a motherfucker. :(

[ysobel]

It is.

[synecdochic]

If you're worried about the acetaminophen: there is no hydrocodone only formulation, but there is an oxycodone only (available generic from several manufacturers), in 5mg, 15mg, and either 30 or 40mg, I can't remember which. I have a bottle of the 5mg that I take PRN for breakthrough pain.

I also love the Nucynta, although we think it's been hitting me in the neurotransmitters. But it's sooooooo good at killing pain.

[blueraccoon]

Oxycodone also comes in a 10mg, which is what I take for pain.

I'm still so pleased the Nucynta worked out for you. I helped! :P

[synecdochic]

You did indeed! I had to cut back the dose because brain, which means taking more breakthrough pain meds, but it's really doing nicely.

[blueraccoon]

I only ever took it as breakthrough; I'm not sure if the XR formula was out when I was taking it or not, but that was never even presented as an option. I really liked it but eventually it started giving me really weird side effects (I kept hearing whispers; it was fucked up) so I gave up on it. Every now and again I wonder if I should try it again, though.

[ysobel]

I love how I went in with "I am worried about effects of acetaminophen" and their response was not "okay let's try something without" but "awwww don't worry your sweet little head about it, you can take loads more without problems".

(I am a lot angrier today about their attitude than I was yesterday, because in retrospect all of the shit about how I have a good attitude and commendable goals was kind of more condescending than anything. my goals were to stop being in so much pain you fuckwits.)

[synecdochic]

Yeah. It's crip inspiration porn, really, and they should fucking know better, but it's not like pain treatment centers are really anything other than a thing general doctors can refer people to and wash their hands. They certainly have this thing against actually, yanno, treating pain.

I am so fucking lucky that my specialist does her own pain meds prescriptions AND thinks the War On (Some) Drugs is such fucking bullshit.

That having been said, I've heard good things about suboxone for chronic pain, so, deus volent and the crick don't rise, it will help you once you have wheeled through all the appropriate hoops.

[blueraccoon]

So, I've taken Suboxone before; I was on it for about a year, maybe more. My experience is that if you can get over the taste, it actually works fairly well and doesn't give you the stoned feeling or loopiness you can get with opioids. However I always ended up needing something like a cookie or a piece of candy after taking it because my god, the taste. It was (don't know if it still is) a sublingual strip, and the first few times I took it I wasn't sure it was going to work out because it was kind of like taking some weird peppery soap thing. However, I am suuuuper sensitive to anything that's sublingual or an oral solution or whatever, so take that with a grain of salt. (Anything I have to take that has any kind of flavor tends to make me gag. Doesn't matter the flavor.)

But as for effects, it worked pretty well. I was on three strips a day (I forget the dosage per strip) and I had an option for a fourth strip if I needed it, which I sometimes did. I finally gave up on the Suboxone and moved back to oxycodone because for me the oxycodone worked better, but my doctor then wasn't willing to prescribe anything but Suboxone so I found a new doctor. The problem I ran into was that I was having breakthrough pain even with the Suboxone, and it's not necessarily designed for that.

The one note I will caution you about is that if you do end up taking Suboxone, regular opioids, including Vicodin, aren't going to work that well. The Suboxone prevents them from working all that well, at least that was my experience. You definitely won't get any kind of "high" from opioids if you're on Suboxone regularly, and for me that meant the pills just weren't working period. But YMMV.

Also Vicodin is an opioid so I don't understand this clinic's reluctance to give you anything better; however Vicodin does nothing for me so I am not a fan of it. (I got genetically tested and it came back saying Vicodin and fentanyl are not good for me, but I kind of knew that from personal experience already.)

If you have any questions about Suboxone hit me up. (As for difficulty getting it, absolutely; there was one pharmacy I knew of that had it regularly, and it was in the same building as my doctor. Anywhere else, forget it, including the pharmacy that only does pain meds by me.)

[ysobel]

Mehhhhh, that makes me less likely to want to try suboxone. I have bad memories of sublingual stuff (there was a period in JH where I was for some reason taking sublingual B vitamin supplements of some sort, and the "stick under tongue and let dissolve" took my hatred of the taste of B vitamins from "I don't like this" to "KILL IT WITH FIRE BEFORE I THROW UP"), and if I end up having to go into Sac (30 min drive each way) to get scripts and the meds, when it's hard enough arranging to get meds from the *local* pharmacy...

I went with the referral so I could talk to the doc in question, but I do not have high hopes.

Also Vicodin is an opioid so I don't understand this clinic's reluctance to give you anything better

They're idiots, pretty much.

I don't know why they didn't go with opioids either. I mean, yeah, addiction possibility, but I really want to not hurt. And patches (including Butrans, which is basically one of the ingredients in Suboxone) or some other sort of long-duration release thing would also deal with the issue that I kept bringing up (but I don't think they really heard) that there is not always someone around to help me get pills when I am hurting.

I am starting to think I would have had better luck being visibly depressed and crying at them and sobbing about the pain. Except I can't do that on demand.

[blueraccoon]

Is there a place you can go for another opinion? It took me...four tries to find the right pain doctor, over a fair amount of time. The problem is that doctors are really nervous about prescribing large quantities of opiates for people with chronic non-cancer pain. (Sometimes even if it is cancer pain.) And there is the unfortunate reality that eventually your tolerance builds up, and the dose that used to work doesn't work so well anymore so you need more for the same effect. But that doesn't necessarily happen to everyone; I know of people who've been on the same dose for years.

I absolutely loathe anything I have to let dissolve in my mouth, and that's edged out only by medications I have to drink. I was in the ER once for stomach issues and they gave me a "stomach cocktail" that was supposed to settle my stomach and I threw it up because the taste and texture. But like I said, I'm super sensitive to that sort of thing.

I think it's definitely worth going to the appointment, and that doctor may also be willing to work with you on narcotic patches or something else. I'll hope, anyway.

[ysobel]

Not really other options. My pcp's opinion has been "stick with Vicodin", so unless I can get a strong argument for something more powerful -- and by strong argument I mean recommendation from another doctor because "I am in pain still" doesn't seem to count for anything -- that's not going to change, and this was the in-network pain management center. And I had to do a lot of insisting to get a referral to this place; since they've pretty much backed my doctor's strategy, I'm out of options really. Except for this one private pain clinic that I have the external referral to. Which is theoretically for talking about suboxone but I'm going to try to talk about other options too.