[quote Iris2020]@minatrina Actually staying active and mobile despite tiredness is a medical recommendation for people in RA, although that doesn't always mean putting pressure on any particularly vulnerable joints.
It is thought that inactivity in arthritis actually exacerbates the fatigue.[/quote]
The lack of any useful disease modifying medication is more of a problem than the lack of a quick jog around the block. It's akin to leaving a moorland fire burning for years without anything more than the occasional bucket of water chucked over 1000 square miles.
The OP's DH's is in excruciating pain because he is at the point of bone grinding on bone. Which will affect his sleep, his sitting, his walking, his getting up, his washing, his dressing, everything. In addition to that, uncontrolled inflammation has its own negative effect upon mood completely separate to that of being in constant pain only varying in intensity and exhaustion. There's also the consideration whether it just affects his knees (unlikely as it's a systemic disease) or whether they're just the most serious and taking most the attention. I've spent months on end being unable to hold a mug of tea - not just lift it, but actually get my hands round it and apply enough pressure to the sides that it doesn't just slip through and dump a hot drink over my lap. If his grip strength is poor due to pain and swelling, he can't make his own tea, he can't open his own biscuits, chances are that wiping his own arse and flushing the toilet is painful and exhausting. And he probably craves some reassurance that somebody cares about him.
Since I've been on a different biologic for my PsA, my pain is at the 5-6 out of 10 mark, other than the particularly buggered bits. It's fucking amazing. I can't remember the last time I had that little pain. I can't remember the last time I slept for four hours in one go before starting this - still took about 8 months of injections plus some steroid pulses, but I can actually sleep and dream now.
I do exercise - I like it. I like the pain of sore muscles distracting me from the pain in my hip/foot/ankle/shoulder/hand/knee/back/pelvis/elbow/neck. I like getting a bit of an endorphin rush in exchange for some more pain, rather than just pain with no buzz. I like being so exhausted physically that I go to sleep for three hours within half an hour of going to bed, rather than being awake until 4.30am and then waking up in pain after about an hour.
But I couldn't have done any of it without the effective medication reducing my pain to a level where the only painkiller I'm not allergic to or I can get prescribed without the risk of sudden policy changes meaning I have to go cold turkey on - paracetamol - takes the edge off it.
OP, does your DH have a good consultant or one that just likes shoving needles into joints? Has he been put on biologics (you get two tries on the NHS and then it's tough luck, usually)? Has he had access to hydrotherapy or at least the chance to get into a swimming pool to have the feeling of water supporting him and cooling the other joints? Has he had access to a pain consultant so that he isn't stuck waiting for joint replacements with nothing more than a 29p pack of meds designed for moderate pain? Do you have a mattress that supports his weight without causing pressure on his joints? A wetroom? Orthotics to try and keep his legs straight and good running shoes to cushion and support him? A memory foam cushion for him when sitting down, a raised chair so there isn't so much pressure put on his knees when he gets up?
People can and do self harm when in that level of pain. It's not like doing a 14 hour shift on your feet. It never goes away. You never feel rested. If you open your eyes in the morning and don't feel pain immediately, you half wonder whether you are dead or have become paraplegic overnight. And somebody who should know what you are going through says 'well, I'm a bit tired and my feet hurt, too'. It's completely different.
It's absolutely the arthritis. If something could be done to reduce his pain, he'd change overnight - I had it affecting my sacroiliac joint for 9 months and I was snappy and irritable and working like hard not to cry each time I moved; the moment it shifted and freed off after the medications began to work and reduced the inflammation, it was like a switch flipped. Because I wasn't in acute pain as well as chronic - and DP apologised for being grumpy with me because he realised that the instant change in me meant I had been in far more pain than he had thought.
Your DH is in both acute and chronic severe pain. It's not laziness, it's the literal agony of not having effective treatment.