I’m approaching the 4 month mark since diagnosed and on 20 mg MTX. I recently noticed positive changes, less intense all over pain, finally some relief from the heal pain. But then I suddenly wake up from a nap and feel like I got hit by a bus! Almost as bad as when at my worst. Then 2 days of fatigue and pain. I did do some pretty hard physical work in the 30 degree heat. Does physical work (splitting and stacking firewood) trigger such a flare up? It made me wonder if the MTX is even working at all. Thanks!
Physical work can definitely trigger a flare up. So can stress. My most recent flare started in late March /early April. It was mostly stress, plus being a bit busier than usual. I’m still not completely recovered from that one.
Would agree that physical work could make things worse for a bit. But remember what really triggers things is your immune system and sometimes that peaks and troughs too.
People always talk of flares but I seriously don’t think I suffer them, I either can feel the meds working or I can feel the meds starting not to work. And invariably I’m right my disease progression has swamped that particular med and it’s time for a new one. Naturally I can have just have less good days when things are working but I don’t class that as a flare, simply a less good day.
Are you now feeling better @Amos or still suffering? You’ve not been on mxt that long though have you? What amount of it are you on? Has the dosage been increased yet? And are you on injections of it or tablets?
I hugely sympathise with other PsA people who actually like chopping firewood & want to keep doing such things. Reminds me of a conversation my brother-in-law reported having with his wife about her mother: ‘Are we really sitting here watching telly while an 85 year old woman splits logs outside in the dark?’ Yet said 85 year old loved to use it not lose it.
We recently put down a patio and a path in our garden. I did the absolute minimum. Given what I’ve said you can imagine how that made me feel. Every now and then I gingerly edged a slab into place. I cut some turves, I levelled some gravel … I paid for that for a bloody month!
These days I definitely find that certain sorts of exertion trigger lasting fatigue. Pain immediately afterwards at least makes some sort of sense but lasting ‘blahness’ and exhaustion and indeed lasting pain are difficult to comprehend. I assume that the assault on hyper-sensitive joints and tendons has an effect not just on those structures but on the immune system and can therefore trigger flares.
I’m not going to stop doing physical work but how best to do it is an ongoing experiment. Doing things that bit more slowly, more methodically, moving ‘smoothly’, resting periodically whether I feel like it or not … all that does seem to make such activities more sustainable.
I always think flares that last more than a week are going to last forever and all is lost and life as I know it is over. However that is not the case!
The most difficult thing is to distinguish between a flare, stupidity, and our advancing age… There is some overlap (or a lot - I don’t seem to be getting any smarter) As I fired up my new backpacking stove lastnight for our BF fundraiser next month, instead of being impressed it boiled 2 cups of water in less than wo minuts I instead asked my self MORE than once. “WHAT THE HELL AM I THINKING”
Don’t they all interact?
Thanks for the response. I’m at 20 mg mtx, almost 4 months since started. The big picture is overall improvement good enough to think, “this isn’t so bad”. But then surprised by flare ups that remind me of how bad it was at its worst. Fatigue drives me to sleep but getting going after any sort of rest is slow, stiff and painful. If I push thought the pain and stiffness, I can be quite productive…and pay for it later. Maybe another few months of mtx will help.
Yes they interact and are in competition with each to yell the loudest!
sounds perfectly logical!
So that’s what you’re doing and it’s not working. Due to the combination of factors mentioned by tntlamb, it has taken me many years to realise that Einstein was right about the definition of madness.
Might I suggest not pushing through in quite the same way … rather, ease into the task. And, dare I say it, actually aim to be a little less productive. That way you can finish the job when you’d otherwise be poleaxed by fatigue.
All I’ve got to do now is to practice this myself.
Thanks, I appreciate the forward answer. I guess I’m still in this fight mode, a bit angry and stupid enough to think, “I’ll show you, crummy PsA!”…and swing an axe for 2 hours enjoying the rush of muscle flexing.
Maybe swing the axe for a 30 minutes at a time instead of two hours. You’ve got inflammation rampaging around your body at times, don’t make it too hungry or indeed too angry. Pacing is the key to managing PsA and it’s as boring, tedious and frustrating as you can imagine it to be but it helps…
I so get this! I was so incredibly frustrated in the early days (and if I’m honest, still am at times).
Boring as it may sound though, the pacing is super-wise. Practice it for years, with successful medication, and all of a sudden you may realise that you are swinging that axe for 2 hours (even if it is in 15 min spurts), with literally no nasty after effects!
That’s been my story (but with horseriding). Pretty much the most demanding thing you can do to your body (if you’re doin it right). I honestly never thought I’d do it again, and I’m back to cantering along cross country trails
I still have s nap after a 2 hour cross country, but I can do 30 mins fully focused hard work in the arena and still get on with my day. Plenty of other 44 year olds would struggle with that…
I’m sure you are right. My way of “pacing” has been walking the floor waiting for the pain to pass! I guess it is a wise discipline but contrary to my typical patterns. Thanks.
That’s fantastic and encouraging! My wife and I used to have horses but about ten years ago they just weren’t getting used enough to warrant the cost. Riding is a great workout. Do you feel real crummy right after a nap? I need the rest but for about half an hour after I wake up it hurts to move…real stiff and deep aches.
Yep, I get the same stiffness after the nap, and usually brain fog too. For a long time I resisted doing it because it felt like I was making things worse. I’m a pretty slow learner, but eventually I figured out that if I paced myself and rested when I needed to, the long-term pattern for me got better and better - less flares, better alertness, lower stiffness and pain for less time when I do overdo it.
I usually only nap for 20-30 mins so it doesn’t disrupt my night-time sleep, and when I wake up feeling lousy, I get straight into a coffee and usually find some sort of light housework (like tidying - for goodness sake this is not a time to swing the axe!) that doesn’t cause problems to do, or even take the dog for a short gentle walk, so that everything stretches out a bit, and tends to help recovery from whatever the big activity was (after all - athletes all do recovery exercise - same principal for us, even if we are not running marathons!).
This PsA lark is contrary to all of our respective patterns. I don’t necessarily nap but I certainly rest, feet up on the sofa for a good hour sometimes.
My biggest flare ups come with PMS and related hormone fluctuations (this will only relate to some folks on this board). Stress and insomnia do a number on my PsA also. Both of those give me general aches, brain fog, and sacroiliac pain at night. Long haul air travel, dragging suitcases around, moving furniture or boxes affect my weak joints and can leave them vulnerable for a couple of weeks or so. I’m still figuring it out. Stretching is important to keep me limber and I use foam rollers often during flareups. Still constantly looking for patterns and triggers and I was diagnosed almost 4 years ago.
You might have dactylitis. If your toes are swollen and purple because the blood does not recirculate one of the specific co- conditions is incredibly painful. It happened to me and did not resolve for some time after I began Humira. Non-rheumatoligists had no guess what was wrong with me. I even had a steroid shot to my foot and of course that didn’t work. You are doing better than I - have not worked for more than five years.
thanks for the thoughts. I’m only about 5 months diagnosed although i suspect many of my unknown issues were the PsA a good year before they named it. At this point I have no swelling that i can see anywhere…but the pain is sure alive. This disease sure has many mysteries and presentations!