I haven't posted anything for a few days, mostly because I'm so tired, mentally and physically. I've barely been tweeting anything either I feel that blah.
I'm also noticing what seems to be becoming something of a cycle the last three weeks or so: I do my Methotrexate and Enbrel injections on Wednesday nights, but I don't think the drugs are lasting the full week. Starting Mondays or Tuesdays, I start getting more sore. My hands and feet, plus random other places. On offer today: my knees, elbows, wrists and neck.
Now, all of these places and others are sore/achy/cause brief sharp pain on and off at times, but this is something more consistent. And today they've been hurting for longer periods. I'm not saying they're killing me. This isn't comparable to the pain I felt when I had migraines before going on prophylactics – that pain had me lying on the bathroom floor contemplating smashing my head against the tiled wall to try to counteract the pain (oh, the joys of migraines!).
No, this pain is sharpish, but ongoing. Achy and ongoing. Throbbing and ongoing. And it's that ongoing nature that's set my teeth on edge and – partially – brought tears to my eyes (I say partially because part of the reason my eyes welled up is the thought that there might be no end to this cycle of awfulness...and that there is no end to the RA...).
The only time I ever went to the hospital because of a migraine was the time my doctor and I decided to stop my daily meds to see if the migraines had maybe, just maybe, stopped. I ended up with a migraine that wasn't too bad but that lasted for 72 hours. If the pain had lasted for less time I could have handled it, but by the time it got to about 60 hours, I'd had enough and couldn't take it anymore.
I sincerely believe pain is relative, for me at least. More intense pain of short duration is easier for me to handle than less intense pain of long and consistent duration.
And I'm trying to stay away from Tylenol because I want to get an absolutely unadulterated idea of exactly what the Methotrexate, Enbrel and diclofenac I'm on are doing for me so I can report that to my rheumatologist when I see her next month.
Anyway, that's pretty much it. Except this. If I haven't said it before, I'll say it now: RA seriously sucks.
It really does.
ReplyDeleteLow-level but persistent pain that stays, every moment, as an aggravating background noise to everything you do is exhausting, both mentally and physically. That's how my hands are most days -- but only my hands. It would be much harder, I think, to be forced to cope with that pain in multiple joints every day.
Of course, the shorter-term, more high intensity pain isn't any picnic either. I'm sorry to learn that the Enbrel/MTX/Diclofenac mix isn't working like it did at the start. That's demoralizing, I know.
Here's wishing you a pain-less day tomorrow and for many more to come. Since I'd be rich if my wishes came true, though, I'll just send some warmth and comfort your way. Be kind to yourself. Get plenty of sleep. Soak in a hot bathtub. Breathe lavender. And feel better, OK?
-Wren
Thanks for your good wishes, Wren; they mean a lot. We'll see how things go when I have a couple of weeks off and can rest up for a bit – maybe that will help.
ReplyDeleteIn the meantime, may you feel well and enjoy your snow and fun with Finny! :) L
Try not to get discouraged. It takes time to find the right mix of medication. Then, of course, it takes time to see if they work. RA is an illness that requires great patience. It is important to believe that the right mix will come along and that a remission is possible. It does happen. If not a remission than certainly a vast improvement.
ReplyDeleteI’m sorry you’re not feeling well now and hope they can find the right mix for you soon.
Thanks so much, Mary! Maybe my tiredness is coming into play. I really need a vacation!
ReplyDelete:) Laurie
Enjoy your time off, and take good care of yourself :) My fingers are crossed as much as RA fingers can be that you experience some good relief soon! Are you planning on going away, or staying at home?
ReplyDeletePony
Thanks, Pony! I'm staying home, hanging out with friends, reading, just taking it easy, which I'm quite thankful for and looking forward to!
ReplyDelete:) L
That constant ache, and with it the knowledge that this disease isn't going anywhere, is incredibly difficult to accept. (I haven't.)
ReplyDeleteI hope you're feeling a bit better today, or are at least finding ways of distracting yourself for long enough periods that you feel you are able to get some relief. Constant pain is utterly exhausting.
I'm thinking of you and hoping things look better soon.
Hey Helen,
ReplyDeleteIt is a bit (a little bit) better today. I keep thinking the drugs will kick in more...drugs, I need more drugs!! I think I might just be a bit of a wimp haha! I had to get up early today to go get my winter tires changed (not that I'm complaining about the weather being fabulous!), so I'm tired and will sleep in tomorrow and will hope that will help. In the meantime, you have a drink for me (just kidding!!!).
:) :) : L
Have you thought about taking the MTX and Enbrel on different days? Just a thought, don't know if that'd help at all. I'm doing Enbrel on thurs or fri and my MTX on sundays still.
ReplyDelete& yes RA seriously does suck!
Hey Skye,
ReplyDeleteNo, I hadn't thought about that. I'll definitely ask my rheumatologist her thoughts on that, although just for convenience's sake, I'd rather they were on the same night – but if that would really help, I'd give it a shot! (no pun intended haha!).
:) L
RA sucks indeed. ~;o( I had the same issue when I was on Remicade - that at first it seemed to help a lot but less and less towards the end of each cycle. And (cross my fingers that I'm not) I feel like I might be headed in that direction now with the Enbrel too. Guess we just have to keep pluggin'? If you come up with brilliant solutions do share! ~;o) Good luck.
ReplyDeleteWill do, Mariah! I'm keeping my fingers crossed it's just some sort of temporary thing, though...
ReplyDelete