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.
I had to figure out what things caused pain.
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.
Thanks for the very detailed view on exercise and flare ups. This is all good for me and as I ponder what you and others have said based on their own experiences, it is a big help. In Canada, our health care system doesn’t allow us to pay for extra visits to the rheumatologist and they dictate the frequency. Right now I am at 4 months between visits unless it is urgent. I think a lot can happen in 4 months…good and bad. While the MTX is helping calm some areas, other new pains keep coming up. Just when I think I am way better, I have 2 painful, sleepless nights. I have no visible swelling but imy affected joints are yelling pretty loud. Without the “expert” examination by a rheumatologist, how I am I to know if I have or am heading for irreversible damage? I think my rheumatologist is looking at my condition as, “There is nothing to do until you complete 6 months of MTX”. Is this a common approach?
In the UK all drugs seem to go through 12 week time periods rather than 26 weeks/6 months. But most DMARDs like mxt usually don’t do alot before around 6 months though. So it’s not an uncommon approach at all.
So did you have baseline x-rays done or hand and feet and other affect joints?And did you a full physical exam joint by joint before mxt was prescribed? If so then the follow ups should show any damage.
But hopefully like me you were ‘caught’ early rather spending years wondering what was wrong with you. If I remember rightly you were. I’ve exceptionally little damage consequently. And what started out so painful, and which I thought would never get better, (my right foot) is pretty much OK now, 3 years later. Instead presently it’s my hips causing me grief and other issues pertaining to osteoporosis. Which isn’t that much to do with PsA other than me and steroids no longer have any relationship!
So hopefully that helps just a little to allay some of your fears.But next rheumy appt ask if there’s damage being done and get them to check too, not just say ‘no’. I’m a great believer in being a very polite but strident and very persistent patient. So I make my doctors work hard at showing me the proof of what they say. And then I believe them. They learn awfully fast that they can’t fob me off. At all.
The only baseline X-ray that I had was of my lungs. The rheumatologist I guess poked around a bit but certainly not a joint by joint examination. I wonder what those who have been on MTX as the only treatment have to say as to when it started to really work.
Re. the title of your post … I don’t think lack of sleep / poor quality of sleep has been mentioned yet.
Conversely, in my experience top notch sleep is up there with the biologics for taming PsA.
you’re soooooo right. PsA often messes up our sleep cycle (pain, inflammation, and even PsA-related blues) and it can be hard to get the amount of high quality sleep we all need.
Really? On average I get 5 hours sleep per night and a 30 minute nap. I didn’t think that sleep and inflammation were related…I just thought that my coping skills would be low.
So true. If we remember the inflammation is caused by a misbehaving immune system (as in it’s ridiculously inflaming things which don’t need to be inflamed), and our immune systems invariably misbehave anyway if we’re overtired and consequently run down , real decent sleep is essential to ensure it doesn’t have that excuse as well to misbehave even more.
If it works for you …
There are others here who have a sleep pattern like yours & do okay. But for some of us sleep is a big deal & we struggle to get it right.
I’d love to have an ‘economical’ routine like that and not have to think about it. I flip flop between insomnia and sleeping round the clock. When I had a demanding job it was just insomnia. I think that broke me. I mean I think it contributed to triggering PsA.
Oh gosh Amos, I’d be a mess, Humpty Dumpty style, if I slept like that! Hang on, at the start when I was diagnosed, I did sleep like that, and I was a mess (thankfully slowly putting myself back together again).
I didn’t connect it at the time, and honestly I was alternately in so much pain /on so many steroids I couldn’t do much about it anyway, but eventually I started suspecting there was a correlation, got some meds that were better, and made some real effort to get as much sleep as was helpful.
It’s 8.18pm here and I’m in bed, just checking in here, then I’ll put my meditation app on, then off to sleep. Probably won’t get out of bed till after 6.30 cause it’s cold and I had a big day today (and I don’t even work full time).
For the reasons mentioned above about sleep and the immune system it’s rare that less than the at least 7 hours recommended for adults is a good idea for us with autoimmune issues, so if it’s an area you haven’t worked on, it’s worth a go as things could be a lot better with more or better quality sleep.
@Sybil, ditto for the demanding job and lack of sleep (and burning the candle at every end available!), pretty sure that put my body under the pressure that made it primed for the PsA trigger (or perhaps we just like to blame ourselves… )
I know the right answer about getting enough sleep but honestly, I think I am still in some goofy stage of denial. I don’t want to look sick or weak, I don’t wan’t to change my habits and I am likely reacting to not wanting this by trying to “prove” that I don’t have to give in to it. Ya…lots of pride issues. Because I don’t visibly have swelling etc, I don’t look any different than before. My limping is really the only outward sign that I have something wrong. Yesterday I had a bad crash day and by noon was miserable. Instead of working through it like I usually do, I went to bed to just sleep until I woke up. Over an hour later I came to and after the usual stiffness shuffle…I can’t believe how much better I felt! Especially mentally. So…thanks, I am re-thinking my sleep habits and figuring out how to care for myself without being “entitled”. My wife and I have were both raised to be on the output side of life…caring for others, giving, sacrificial living for family and friends etc. So when it comes to self care…it doesn’t come easy. “It is easier to give than receive”…But I suspect that is going to change one way or another.
@Amos I have a tough time with appropriate self-care, too. And what’s worse is that when you’re all inflamed and suffering you’re not in you right mind so you’re even less able to advocate for yourself than you might otherwise.
Sleep is a huge issue for me. I hate going to bed (fear of missing out?) and when I get to bed I often have trouble calming my brain. I’m a big fan of meditation and mindfulness and I’ve recently supplemented those two Ms with another M: melatonin. It’s been a really big boost to getting me in the right frame for sleep.
I feel your ego struggle, I do. Admitting you need a bit more sleep might seem like giving in to your illness, but truly it’s just one more weapon in your arsenal to fight off the inflammation.
To be honest you’ll probably be able to offer help and support to others for a lot longer if you look after yourself now.
So know that one. When PsA hit me, I spent the first year like that, basically having a temper tantrum. At least you’re taking the meds, I wasn’t then. The good guys on here helped me over that one.
Glad you’re finding out the benefit of ‘napping’ and ‘stopping’ when necessary.
Great to hear about the nap… I know it seems a small start, but the thing with these self-care things is that if you persist they can snowball to make a surprisingly large difference- not always to how much you can get done, but certainly to your quality of life, which of course for most of us makes a huge difference to the quality of life of our loved ones, as we become less and less grumpy-pants
Oh, and it’s still seriously common for me to have an afternoon nap on top of my 10 hours night sleep!
I also agree about Einstien’s theory and I do the same “ease into a task.” I used to say what the hell and just jump in. Now I gentle take on the task and stop when I need to. Of course that doesn’t stop my stubbornness or unwillingness to give in! That’s for another post.