Hi everyone I would really appreciate some advice. I’ve been taking hydroxychloroquine since August and noticed a positive difference especially in fatigue in late November. I was therefore really hopeful that things would continue to improve and, a year after I first noticed the joint swelling I’d be fine. But in fact after a couple of “good” weeks in which I continued to have joint pain though no swelling, I’ve gone backwards again. My rheumatologist suggested upping the dose which I’ve done.
I feel like I’m living a half life - I have enough energy to fulfil my part time work commitments and ensure my children are ok but anything that isn’t a must doesn’t happen and my preferred state is horizontal with a heat pad. I’m 38 so this isn’t what I expected for this stage in life!
I still don’t have a firm diagnosis which doesn’t help. I’m a positive person and motivated to help myself and push through whatever this is but I find it hard to maintain a positive approach when the best I’ve felt for over a year involves low level ankle/foot and wrist/hand pain and the worst has been pretty hard to bear.
Does anyone have any ideas as to how I can improve things or has anyone been through a similar thing and can give me hope? Thank you!