New to PsA: questions about breathing and sleepiness
Hi everyone
I hope you're all having a comfortable day. I'm very grateful to have found this site with so much collective wisdom and compassion.
I'm new to PsA and finding it all a bit overwhelming, and I definitely have some questions.
I was diagnosed about 4 or 5 months ago after some weird swelling in one ankle and foot (pitting edema), then pain and swelling in hands and feet. I had almost every test imaginable to determine whether the edema was related to a heart issue or something else. Everything inconclusive. Then the hand and foot pain started, got a diagnosis of PsA, referred to a rheumotologist, and have been on methotrexate for about 3.5 months.
All that took months to work through, and I thought things would start to settle. Alas, no. So here are my questions:
I am fatigued but not as badly as before the methotrexate. The issue I'm having is between breakfast and lunch, I fall asleep at my desk. I've tried more coffee, less coffee, moving around a lot, extra sleep, more water, lighter breakfast....all sorts of things. I'm even on low dose prednisolone. But I just fall alseep and it's getting worse. When it first started, I'd nod off, jerk awake and be OK for a little bit. Now I'm full on sleeping at my desk - dreams and all! It's impossible to work and very frustrating! After midday, I feel normal(ish). Has anyone else had this issue? My doctor thinks it's possibly a methotrexate side effect, but suggested I discuss with my rheumotologist.
The other problem I'm having is my breathing - shortness of breath when 'exercising'. I've had a high res CT scan, chest xray, blood tests, checks for blood clots - nothing came back to indicate anything. The breathing issues started when my ankle swelled up late last year, calmed a bit when I started on a high dose of prednisolone, but got worse when I tapered off the prednisolone (now back on the pred on the advice of the rheumotologist). I did a spirometry test a few days ago which showed moderate to severe restrictive lung disease (the type where inhalers don't help). However, nothing has shown up on scans. My doctor has no idea (complications from methotrexate has been determined as unlikely) and I'm booked in to see a respiratory specialist. It all seems so coincidental with the swelling at the start of my PsA adventure, but no one (yet) has any idea. Has anyone else experienced lung/breathing issues? Any suggestions most welcome!
Sorry for the long initial post, I didn't mean to leave a wall of text! Thanks for reading 😀
Hello
, we're so glad that you found this community and have reached out here. First off, I am sorry to hear about your recent PsA diagnosis, and the overwhelm that you're feeling is understandable and very common. Getting a new diagnosis for a chronic condition like PsA can be a lot to manage and please know this community is here for you.
You have some very interesting questions to experiences that you're having, and I do hope that some of our community members with any similar experience or insight can comment and share with you here.
In the meantime, I wanted to share this article on of our health leaders wrote about things she wishes she'd known before starting methotrexate, https://psoriatic-arthritis.com/living/before-methotrexate. Unfortunately, fatigue can be a big part of of managing PsA - in addition to a possible side effect - so it's good if you bring this up with your rheumatologist as well. Here is an editorial on PsA and fatigue, https://psoriatic-arthritis.com/psa-symptoms/fatigue and this article was also written by an advocate about this topic, https://psoriatic-arthritis.com/living/fatigue-tips.
Also, as you mention the shortness of breath, bringing that up with your rheumatologist might be a good idea as well. While we are not doctors, and it sounds like your general practitioner has already done a lot of testing to rule out the most obvious or concerning things that could cause this symptom, with chronic inflammation (from the PsA) it's always good to check any new or worsening symptoms.
I'm sorry that I couldn't be more specifically helpful, but hopefully some of our community members here chime in while you wait to check in with your rheumatologist. And, of course, please don't hesitate to reach out here any time, whether you have more questions, need to vent, or could use some support. Sending you gentle hugs. -- Warmly, Christine (Team Member)
