Hi! New to the forum, but not to PsA

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,

My story:
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.


Hello Ash and welcome! Great to hear that this community has been useful to you already.

And it definitely sounds as if you have a plan! A good one too. It’s good to meet you.

Wow, nice intro, Ash! Welcome to this lovely group! There are some very smart, interesting and funny people here—laughter IS the best medicine, you know! But it does help to have the smart people, too, because there is a lot to learn about inflammatory disease…it does seem like you’ve learned a lot already and you have a positive attitude. Sad that you were diagnosed so young and on top of PsA, having Lymes Disease!
But, glad you’ve found this place!

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Hi Ash, good to meet you too. Glad the cat and dog snuggling helps. And let’s hope the humira does its stuff soon too.


Glad u found us. It has helped me tremendously. Welcome!

Thanks everyone for the kind words. And thinks for listening!

How are things going for you now, Ash? We’re glad that you found us, and even happier that you’re glad too!


Hi Ash, It sucks to be us but the emotional support from family and friends is key. Aside from all the depression, drugs, Doctors, tests, etc having them understand is golden. I say this after almost 40 years of dealing with it. My second husband of 10 years left me when I had to stop working afraid he would have to somehow support me. In retrospect, the best thing he did for me But, my daughter now 40, has been diagnosed with RA and is now on Humira. She has has symptoms for years but finally decided to see a Rheumatologist. She cannot stop telling me how she NOW understands and gets it. The fatigue, the reasons we would have to leave an event, etc early because I didn’t feel well, or perhaps would sit somewhere when we traveled to let her and her Dad and/or friends carry on. And some of these things she remembers from when she was a child! She is an only child so we always took a friend with us on vacations/holidays, sporting events etc. But worked out great as I was not able to do as much as a lot of people, depending on the day. Sorry for babbling but to me after all these years, just knowing she and her Dad get it is what makes me feel a million times better. All the best in your journey Ash.