Hi, I’m Ash. I’m new to the forum, but not new to PsA. I realized recently that I’m having a lot of trouble dealing with the emotional side of autoimmune disease. I found this forum and thought it would be helpful to connect with other people dealing with similar issues. A week ago I couldn’t even go to a movie with my husband because I was so fatigued. I can’t quite figure out how to deal with the unknown of - do I need rest or do I need to keep moving? Will doing xyz or not doing xyz make it better, worse, or have no effect? The answer is different each day I can’t seem to figure out the signals to indicate which is right at the time. So, the best I can do is to laugh at my whineyness, and snuggle with my cats and dog.
Thanks for sharing such a wealth of information with me already,
Diagnosed with PsA when I was about 15 (around 2000). It would flare up in large joints, such as elbows and mostly the knees, and then fade. I don’t recall which few meds the pediatric rheumy tired me on, but they didn’t seem to help. So, my young and stubborn self just handled it by taking naproxen when I needed it and knowing that when I’d do things like going on a hike, I’d have trouble walking for the next few days.
It was worse during my college years, with things like school stress, a 4th floor walk up, and a huge very hilly campus to get around, but it was still mostly just knee problems.
It was best a few years back, around age 30. I decided to get healthy, and wanted to be able to run a mile. So I kept going through the knee pain and the limping (since my knees wouldn’t extend correctly for a few days after a run). I found that I built up my muscles such that everything put less strain on my knees, and things were so much better. Running was addictive and healthy and fun. I even ran several half marathons and one full marathon (slowly, but I finished).
Last winter things changed. I’d been feeling fatigued all the time - but first I attributed that to stress (bought my first house, was planning a wedding, normal life). Then I started getting crippling pain and cramping in my hands and ankles, unlike anything I’d experience with my PsA. Being used to doctors not being too helpful, I put off going until I couldn’t get to work one morning because I couldn’t grip the steering wheel. So, last April I was diagnosed with late stage lyme (with some question due to autoimmune diseases ability to give a false positive) and PsA again that is kicking my butt in new and not-so-fun ways.
Since then I’ve been figuring out how to deal with my now enhanced PsA. I’m very lucky to have a supportive husband, a job with really good sick leave and health insurance and an awesome rheumy. Due to treating the lyme I had to delay going on anything for the PsA besides prednisone and naproxen. I started humira and it was helping, then ended up off of it for a bit due to changing insurance. I feel like I am losing myself. So currently I’m a couple weeks into restarting humira, eager for it to kick in like it did the first time.
I’m trying to shift my lifestyle too. Eating healthier, less inflammatory foods. Losing weight (a lot of which I gained in the past year thanks to prednisone, stress eating, and going from lots to almost no exercise). Taking up tai chi. Accepting that I just can’t do as much as I used to. Being grateful for the things I can do. And now, reaching out to this lovely community. Thanks again for being here.