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!
I had to figure out what things caused pain.
I went from working 60 hr weeks to disability.
I continued to push myself around farm etc. and ended up with pain🤪. After a few years I have learned that some things need to be done by someone else!
My counselor told me to remember I am a
Human being not a human doing.
My son was diagnosed with PsA when he was in high school, late teens. Between October 2018 and March 2019, he had some very, very bad flare ups, requiring multiple trips to the ER, like every other day, for pain and inflammation in his knees, back, neck, fingers. He’s currently on Otezla (twice a day) and Remicade infusions every six weeks. Those were bad times for him. He couldn’t get up without assistance, he had to use crutches and a wheelchair. He’s 22 now. Recently, he worked two nine-hour shifts at his job; he works in a restaurant as a busser. He’s on his feet for almost the entire time, except for a half-hour break. His knee swelled up and was painful, requiring another trip to the ER and a Rheumy visit. Overall, I’m pretty sure he over-did it with the standing and constantly moving around. But, the Otezla and Remicade have helped him. It’s taken us years to figure out what works, but not everyone is the same. Some have used certain meds for years and it works for them. He’s been on Humira, which worked best, but Humira caused him to have a fatty liver (not good), so he went off that. He tried Embrel, but that didn’t work. He did take MTX for a while; again, no success. As others have suggested, maybe limiting the hard physical activity to shorter spans may help.
Thank you for sharing some of yours and your son’s journey. Wow, that is youngest that I have heard of it hitting. It is painful in a different way to a parent watching their child with a disease like this. At any age, we just want to take it from them. I wonder if any studies have been done to compare those who are relatively sedentary (by choice or condition) and those who continually push the limits of physical involvement. Sometimes I think this disease just has a mind of its own and will do what it will do. The meds seem to put a road block up that deters it for a while until it sneaks around. With normal to high exertion, I do suffer joint pain even where that particular joint wasn’t in high use. But because it always seems to level out in a day or so, I keep going as there are considerable benefits to the exercise in getting good circulation to all ends of the body and improved cardio-vascular etc. I don’t want to learn the “hard way” and regret pushing the limits later…Maybe some others can continue to share their stories? Your story about your son is inspiring!
I think the thing to keep in mind is whether or not you’ve got any damage occuring? Unrestrained rampant inflammation certainly will cause damage at some stage but that differs from person to person as to how fast or how slow. A good rheumy will always be checking for damage as well as inflammation.
Pushing through when you’ve got damage is never going to be a good idea. However keeping on doing the physical activity your body was used to and keeping on exercising is not necessarily a bad idea. Exercise is lotion for this disease. Being static any which way is generally not a great idea.
When I first developed this disease, I couldn’t handle the pain levels at all, and was simply terrified if x part of me was swollen and inflamed, it would always remain swollen and inflamed. So of of course the panic increased as the inflammation had party in x place, y place, z place and then god knws where else.
But I discovered that wasn’t the case. First I got more used to the pain levels - that astonished me frankly. Secondly I discovered that x, y, z part of me often went back to normal sometimes (especially when the meds worked) and the damage I was getting was frankly happening really slowly and relatively mildly in comparison to some others.
So it’s a question of getting to know how your own disease goes. Keep getting checked to see if any damage is occuring, keep getting checked to see what’s inflamed or swollen - they’re different remember (by physical exam not blood tests) or isn’t and you do tend to get to know it better.
And then you get just slightly better at knowing what level of physical activity works for you. At least most of the time anyhow.