Does anyone have a good reason why resting causes (horizontal, sleeping or not) stiffness and pain ramp up? I think we all know that movement reduces stiffness and pain, but after I go for a walk or do a bit of yard work, I always have to pay for it later even though quite pain free while active. (except for mechanical joint issues)
1 Like
It’s something with the synovial fluid I think. I vaguely remember reading an explanation about it years ago. It’s the reason why I’ll push through that stiffness even if it lasts for a bit, because I know that’s the only way to make it go away
1 Like
It’s also to do with lactic acid issues which anyone will get after doing some strenous exercise and then resting after. All those gym instructors are hot on explaining lactic acid issues. Hence all the warming up exercises and cooling down exercises. Add in our inflammation issues like the synovial fluid issues as @Stoney said and ergo our higher levels of stiffness to include pain.
Even non PsA people will get stiffness after heavy bouts of exercise. For us it’s intensified.
That’s why ‘pacing’ for us is so important. Little and often activity with breaks in between is far better than going at it too long and then paying for it too much. If you’re paying for it later @Amos you need to do more interval paced activity as in more little and often. Break the task down more and take more breaks.
When I go for a walk with my dog I sit down on a log in the middle of it. That’s our standard lunchtime walk in a nature reserve and I’m very partial to that particular log too. My dog knows to go to it. If it’s a longer walk or I’m walking somewhere else I sit down for bit several times. Knowing there is somewhere to sit on a walk is very important to me. I’ve even been known to bring a pop up stool thing with me. Same for gardening or housework. All tasks are broken down and paced out significantly.
And then there are days that I do very little…and still seize up and hurt. Not enjoying this wait for Simponi to kick in.
Perhaps you are doing too little then? It’s a huge balancing act between too much motion and too little.
I’m on a med that I consider works for me but I still pace things out considerably. That need for pacing doesn’t go away when a med works for you. Its intensity eases for sure but the essential need to do pacing is always there.
As regards Simponi dosing can be adjusted for weight as I understand it. Is your dose adjusted to your weight?
Interesting thought about weight. I was just observing how medication for pets is more precise than for humans. I don’t think weight has ever been considered in any of my prescription meds. But two months ago my rheumy increased my Simponi to every three weeks instead of once per month.
Exercise comes pretty naturally on our acreage as there is always chores to do etc. Sometimes more sometimes less. Just owning property requires constant maintenance…which I usually enjoy but pay for slow paced physical stuff or too much too fast. The fact that I am having an outbreak of inverse psoriasis that hasn’t been this bad in ten years is indicative of my immune system on overdrive. Even MTX and Sulfasalazine calmed down the psoriasis before helping joint pain.
I was diagnosed in 1982 and still had another 4 years military service to do I managed to keep up with the fitness but the amount of stretching I had to do so help the stiffness was maddening Im 61 now and can’t do much at all a short walk a bit of gardening and I suffer for it.
I think you’ve misunderstood me. Simponi is one of the few biologics can be increased due to your weight. You need to research the meds you take and prompt your rheumy when they might be forgetting options. So if they forget to consider something - prompt them to now consider them. Increasing the frequency of dosing isn’t the same as increasing it as regards your actual weight.
If I’m changing meds or there’s consideration of it, I reseach all those still available to me before my appt so I know my questions to ask on all the meds. I read up on them all - not just the manufacturer’s website but the clinical trials too. I literally google all meds used to treat PsA and work out which has been approved by my funding body and go from there. So I walk in knowing dosages, efficacy rates, what appears to throw what side effects, what appears to be better for say psoriasis rather than PsA, what appears to be better spine wise or otherwise since so many of our meds are used for AS too.
It means we have a truly proper discussion of what to try next, rather than me just being told.
Thanks @Poo_therapy. sigh. Things just don’t work that way in our system in Canada. Specialists here do not like to challenged and doing so just means less necessary attention. Typically, once on a biologic we will be seen twice per year for 15 minutes or if extra sunny outside, 20 minutes. The care given is done with their hands tied…see more patients for less time or less patients for longer time. Most get paid per patient visit so opt to see more for a quick, to the point visit. It’s not really their fault as we simply just don’t have enough of any MD’s to fill the needs…or nurses. As to your way of approaching things…I love it but realistically…not going to happen right now. They don’t have time or energy for patient input.
They don’t in the NHS either. The same time pressures apply here. For the most part. I’m lucky with my rheumy though who runs an appropriate timed clinic. That’s why I go into appts armed with all the relevant info I can find so that I can interject with questions. My mantra is ‘always help them to help you’. Doing it that way doesn’t take up that much time but does make the time count better. I also email beforehand so they know where I am at question wise which again reduces time spent.
So in reality I face the same sort of system constraints as you might but I just handle it differently to get the questions I need answering answered. Patient input is a huge part of non negligent medical care - if you need to remind them of that - so be it. I’ve also told medics in the past that the appt is actually ‘my appt’ not theirs given how the medical service (the emphasis being on the word ‘service’) is set up and they need to recognise that.
But on the otherhand I don’t waste their time, I have cogently researched what I need to have done, I am to the point. And from the sorts of questions I ask that’s obvious. Hence there is a better respect level fostered. So I would have already known before Simponi was mentioned to me that its dose could be adjusted per the weight of the patient, if that makes sense. And so if that one was mentioned I’d have asked that question. And say with Rinvoq another one on the table for me, I know how it affects cholesterol and BP so I would ask questions about that. Another one that is on the table for me Tremfya and that takes longer than any of the others to get going but dosages can be more freely adjusted to help so I would know to ask questions about that too. And so on. That’s what I mean about going into the appt fully prepared. I do a lot of background work on the options the medics have at their disposal to help me.
If you find out, let us know! I’m not too bad in the mornings joint wise. But for the last month, after I have been about 20 minutes all the muscles in my back start burning and aching badly. This is new and I am not sure what is going on. I drove for 6 hours Tuesday coming back from Missouri to see the eclipse. I am paying for that! If I drive more than an hour or so now, I have to stop about over 2 hours and get out and walk around.