Anyone else have difficulty with pain meds?

General
1

I'm a little frustrated with my current "pain management" treatment - I was on NSAIDs (I've pretty much cycled through all of them) for years since diagnosis, and am now on Tramadol but am discovering I have similarly frustrating intolerances to pretty much everything.

I'm completely off NSAIDs - as they cause a variety of gastric problems, horrid heartburn that doesn't respond to acid blockers, and ridiculous bloating (it took me months to lose the water weight I'd gained after quitting them - I thought I'd just gotten fat! well... fatter).

Turns out the Tramadol I'm on also seems to make me bloat and cause weird insomnia-like symptoms (so annoying to be in pain, take a pain pill to get comfortable-ish, then be unable to sleep because of the pain pill). I'm not a fan of opiates anyway, even synthetic ones, so I only ever take it sparingly (if I just can't stand it), but it's frustrating.

I've discussed these issues with my Rheum and she offered prednisone for my current flare and said I should try melatonin for the sleeping. I picked up the prednisone, but haven't taken it as my pain is much more manageable now and seems to be improving (I should feel lucky it seems this flare won't last too long, unless it decides to yo-yo with the weather), and the melatonin with L-theanine which seems to be helping with the sleep even though I'm not taking the Tramadol at the moment (I will if it get's unbearable, but until then I just suck it up).

I really wish I lived in a state where medical marijuana was legal - as at least that would give me a different avenue to try (and to be honest, I'm not above self-medicating when things get too bad with some of the old homegrown - but I don't really like to because I'm not a fan of the way I feel on it).

I guess my question is, anyone else have problems with pain meds? It's like they either don't work at all and I might as well be taking sugar pills, or they kind of work-ish but give me horrible side effects and I'd rather deal with the pain. *sigh*

(P.S. because it's always useful info to have in these discussions - I'm currently on mtx and humira, and they seem to be generally working well, but Spring makes me flare regardless and Kansas is having some terrible yo-yo weather).

2

Lots of previous discussions on this topic .... generally the opiates are bad news. For your sleep, I'd recommend asking your docs about whether low dose amitriptylene is suitable for you .... effective, not habit forming, can be taken 'as needed'. Lots of us here take it or have taken it ... it helps you sleep and also with muscle relaxation/pain relief.

3

I was prescribed Tramadol after my hip replacement in 2014. It made me sick and dizzy. I tried something else (I can't even remember what it was called) and it was even worse. I was a bit desperate, because they'd just sliced open my leg, sawed right through the bone, hollowed it out with a drill, and hammered and bashed me back together again, and I HURT! In the end, I discovered that although I could not tolerate taking 2 Tramadol 4 times a day, I could tolerate taking 1 up to 8 times a day... I think sometimes it's not the drug you need to change but the way you take it. Might be worth discussing with your doc and trying...?

4

Hi Subliminal,

when my disease was not well-managed I needed more pain relief and took Tramadol for a short spell. I wouldn't recommend it. Like you it gives me periodic sleep problems--like conscious dreaming. And the nose itch is intense!

Since I've been on medications that better control my disease I've found I (I was going to type rarely but now I think about it that isn't accurate) I NEVER need any pain relief for my joints. I know this isn't everyone's situation and 18 months ago I would have scoffed at this response myself. But the answer to less pain is better treatment of the disease (not the symptoms). I'm typically a winter flare-up person and that just didn't happen for me this year (yay!!).

I'd be interested in what your doc says about the efficacy of H and MTX. My doc doubled my H frequency then added Otezla as a supplement and that's what helped me turn the corner. I wish you luck figuring out how the help yourself when you're feeling bad!

5

The only thin give ever been given is tylenol - I can’t have nsaids in any form - tylenol is pretty much useless so it’s basically nothing that I have -I too am tempted with medical marijuana but can’t stand the out of it feeling - but never say never!

6

Golfnut - good news! Much of the medical marijuana does not have a high THC which is what makes you “high” it’s the other chemical, can’t remember the name, that they use. So, if you’re somewhere it’s available, it might be worth a try. Different strains work better than others so maybe a little trial and error, but a doc should be able to help. Also check the discussions, I can’t remember who, but someone did some posts on it not too long ago and her experience getting a script in Canada. Lots of good info there.



Good advice otherwise; I’ll do some thinking. I don’t think I’ve ever experienced a full remission of symptoms, and am not sure I ever will (I have good days, but have to watch it).

7

So far I have only been taking one 50mg, at a time, second dose(if I can put up with it) 8 hrs later. If I take one other than in the am it can’t be any less than 5 hours before bed. Honestly not worth it half the time, but Sunday I was laid up on the couch nearly in tears, so I would have taken ground up beef liver if someone told me it’d help. :wink:



flow said:

… I discovered that although I could not tolerate taking 2 Tramadol 4 times a day, I could tolerate taking 1 up to 8 times a day… I think sometimes it’s not the drug you need to change but the way you take it. Might be worth discussing with your doc and trying…?

8

I don't need pain relief either janeatiu. I do hurt, but it's tolerable so far. I think I do probably have a high pain threshold, when I look back on my life there have been very few times when I've experienced pain badly enough to need any sort of painkiller. But PsA was seriously painful till the meds kicked in. I'm not feeling great about mentioning this as I appreciate that for some the search for disease control sufficient to kick pain into touch is much more problematic than mine has been. But I guess our combined experience suggests that continuing to search can be very worth it.

janeatiu said:

Hi Subliminal,

when my disease was not well-managed I needed more pain relief and took Tramadol for a short spell. I wouldn't recommend it. Like you it gives me periodic sleep problems--like conscious dreaming. And the nose itch is intense!

Since I've been on medications that better control my disease I've found I (I was going to type rarely but now I think about it that isn't accurate) I NEVER need any pain relief for my joints. I know this isn't everyone's situation and 18 months ago I would have scoffed at this response myself. But the answer to less pain is better treatment of the disease (not the symptoms). I'm typically a winter flare-up person and that just didn't happen for me this year (yay!!).

I'd be interested in what your doc says about the efficacy of H and MTX. My doc doubled my H frequency then added Otezla as a supplement and that's what helped me turn the corner. I wish you luck figuring out how the help yourself when you're feeling bad!

9

I've always had a fairly high pain tolerance - but the constant pain that I get when I flare, is a little more than I can handle. It wasn't always this bad, I only noticed in the last 6mo-year that I'd get irritable, quicker to anger, and more easily frustrated and quickly connected the dots that it was the constant, never-ending, ache(s). This past Sunday/Monday was probably one of the worst two days I've had in 4 years - I'd argue even worse than when I first got diagnosed because my feet had been hurting so bad I could barely walk. But it's large joint involvement - my hips - and when they get that inflamed my skin get's hyper-sensitive and feels like a bad sunburn (I had to switch to wearing a pair of boxers it was that bad). On top of that there's almost 0 positions to get into that don't involve pressure on your hips - you can't sit, you can't stand, even laying down can be treacherous. I've also gotten more sensitive to pain, I think, as I've slowly gotten the disease under control with medication (and the mtx and H are controlling things much better than anything else I've been on so far - I used to ache daily, which is no longer the case) I've gotten more accustomed to NOT being in pain (a good thing, I think) so when I am I'm more aware of it (and I'm more aware of it because I know it's probably doing damage).

*sigh*

Sybil said:

I don't need pain relief either janeatiu. I do hurt, but it's tolerable so far. I think I do probably have a high pain threshold, when I look back on my life there have been very few times when I've experienced pain badly enough to need any sort of painkiller. But PsA was seriously painful till the meds kicked in. I'm not feeling great about mentioning this as I appreciate that for some the search for disease control sufficient to kick pain into touch is much more problematic than mine has been. But I guess our combined experience suggests that continuing to search can be very worth it.

janeatiu said:

Hi Subliminal,

when my disease was not well-managed I needed more pain relief and took Tramadol for a short spell. I wouldn't recommend it. Like you it gives me periodic sleep problems--like conscious dreaming. And the nose itch is intense!

Since I've been on medications that better control my disease I've found I (I was going to type rarely but now I think about it that isn't accurate) I NEVER need any pain relief for my joints. I know this isn't everyone's situation and 18 months ago I would have scoffed at this response myself. But the answer to less pain is better treatment of the disease (not the symptoms). I'm typically a winter flare-up person and that just didn't happen for me this year (yay!!).

I'd be interested in what your doc says about the efficacy of H and MTX. My doc doubled my H frequency then added Otezla as a supplement and that's what helped me turn the corner. I wish you luck figuring out how the help yourself when you're feeling bad!

10

I'd have to say I'm with those of you who really haven't had to rely on pain meds because most of my pain is weirdly "different"--it's hard to describe! The only time I took serious pain relief was 3 weeks of 3,000mg/day ibuprofen for my back. Luckily the back pain was letting up when I started having stomach pain and blood in my BM, because that scared me! Now, every time I take one ibuprofen, even if it's with food, I get pain in the pit of my stomach!

I used to be totally against opiates and big pain meds, but I've changed my stance on that because there's only so much pain one can take, and sometimes I think I'd rather be " knocked out" than deal with excruciating pain. Not sure when that time will come for me--hopefully never. We all do have our threshold, and as time goes on, mine seems to be getting lower!!! I can definitely see how pain can take years off our life--funny thing, before I started Enbrel 20 months ago, the "pain" (remember, I wasn't having what I thought was severe--it was more a flu-like achy, all-over sick feeling) I was saying I didn't think I could handle it past the age of 70 (I was 60) it was just too hard. :-(

With Enbrel, I still have some pain but it's way different--not all over flu-like at all, and the joints that have osteo secondary to PsA are much more tolerable (haha, well, let's leave my feet out of this--they're a pain in the a** most of the time!). I don't think there will ever be no pain--I'm sure most everybody with this disease can't imagine that, but it's still day and night better than it was before Enbrel! :-)

11

Grandma J - I used to be that way about opiates to, but once it got to the point where I couldn’t take NSAIDs anymore there wasn’t much choice. The Tramadol I rarely take doesn’t really make me feel weird at almost, not drowsy of goofy headed, and does help with some of the less severe but still bothersome pain. But I also react funny to some drugs (I was put on wellbutrin once as a stop smoking aid, and it felt like what I imagine speed is like - one of my eyes dialated all huge while the other remained the same) so there may be something in my brain chemistry that just doesn’t respond to it like the average person. Tramadol does make me feel more alert, but that might be due to the lessened pain, though I can’t figure out what in it makes me unable to REM.