Hello everyone. I started on hydroxychloroquine a week ago, no change yet, in fact pain in hands and arms much worse recently and making sleep difficult. Knees very stiff especially on stairs. I know it takes time. I don't have a definite RA diagnosis, am having an ultrasound today to look at synovitis in more detail and back to rheumy in 6 weeks. Feel a bit lost in no man's land as without specific label, don't know how to access services that might help at hospital.
Am only on 200mg a day although script said 200-400, not sure who decides if I start taking 400 and when? Do I just decide for myself if no improvement?
In meantime, feeling pretty low as the fact this is not going away is hitting me. I've had it since Oct with no relief so far. Husband getting the sharp end as I feel pretty angry and miserable. Then I feel guilty about being difficult to live with. Wider family don't seem to understand or offer help. I am so tired it is difficult to feel upbeat.
I'm not on any pain relief - I had naproxen early on but it did nothing. Should I be asking for something?
I have 3 kids who are all reacting differently (as I can't do things I used to) - 1 daughter staying close by and being very caring (showing her worry by being very good), other quite sad and quiet then has bursts of being angry, and 1 son getting angry and complaining that he is having to 'do everything' on top of school work - like open everything for me - when in fact I haven't asked him to do anything. He complains about me not doing things for myself (according to him) and gets angry. Originally he got very upset and didn't want to go to school, which turned out to be because he was worried about me being alone and having a fall or something. I haven't really told them a name for what is wrong - as we don't have a 'label' - only that I am now on some medicine to try and make things better.
I also got some new work last week - yay - which was hard-won as I had to delay the interview till I felt a bit better, and I worked really hard to get recruited. I start late April for 2 days a week and am not sure how to deal with asking for adjustments as I can't write for long, carry things, open heavy doors etc. I am not going to be an employee as such, more a freelance/ contractor so not sure how to approach it. They did make adjustments for my interview.
Overall just feeling a bit alone and overwhelmed.
Thanks for reading.