I only got diagnosed with psoriatic arthritis last Friday. I saw this group and wanted to join to see how other people deal with this physically and emotionally? I’ve already missed 7 weeks experience at my placement but I know managing it doesn’t come that quickly. Any advice?
You deal with it because you don't have any other choice. Management comes as noted with time. There is lots of good advice and ideas here given the large diversity of folks and disease levels, some make sense, some doesn't. But understand if someone takes the time to share, they are giving you what they believe to be valuable advice and information as it has been valuuable to them. CONSIDER it all.
Now all that aside the professor/teach in me is concerned about your internship. its critical to your future endeavors. You need first to get with your adviser and get that squared away. Even though your placement supervisor may say he understands, you have missed a lot of time.......... maybe a leave and extension? I don't know what is appropriate for your field.
What are your docs plans? Here the thing at your age the pain are having is far more debilitating than the same pain level in someone twenty years older. Somehow with a combination of movement, anti-inflammatories, and maybe some prednisone, you have got to learn to cope with the pain until the more systemic drugs take hold (DMARDS or Biologics)
There will be times in your life where there is less pain than others and I assume you to be in your early 20's-30's, a period where the disease MAY go into remission. BUT there may well be some times where the pain is not under great control. Its a new normal. Sadly we can't just quit doing what we have to do when those times come. learning some good coping skills will serve you well (these boars are full of them from stretches to shoes to splinting to heat pads etc etc. Most (in excess of 90%) of PsA patients live pretty normal and most certainly fulfilling lives without serious disability.
I'm glad you found us. There is LOTS of help here......
Thank you for the reply. Puts a nice clear view on it. I am 20 and my plans are unclear hence the ask for advice. I work in IT and have been working from home but currently my wrists are affected the most which isnt helpful!
The plan from my doctor is currently trying an anti-inflammatory, they had me on several before my diagnosis, none of which have yet had any joy for pain relief.
The last thing I would like to do is give up just before my final year of university.
Hi and welcome. This site is, itself, a way to cope. Reading everyone else’s experience helps you to understand that there’s no such thing as normal! Not much consolation, I imagine, but you just have to deal. I recommend “How to be Sick” by Toni Bernhard if you feel like reading something to help with the coping skills. And there is a great book on PsA that I’m blanking on right now, but it’s called “the facts” or something similar. That’s good for figuring out your disease. Hang out here, too. There are some wonderfully helpful souls on the site. Cheers and good luck getting back to your placement (when the time is right).
The book is Psoriatic Arthritis: The Facts" it’s available on Amazon for download of under $10, I think.
I would push go more aggressive treatment than simply an NSAID. Either DMARDs or a biologic if you can get it will be the way to go. The NSAIDs help, but you need more than just that.
As far as school goes, that is a decision that you will have to make and commit yourself to. A year ago, I was wondering how my family would survive without me working. Today is a much different story. I hurt every day. Some days are worse than others, but the pain is an every day thing. I have figured out how to change my thinking and my environment so that I can continue to live. It’s something that I had to decide that I wanted and it’s a choice I make every day. Today, I will go to work. Today, I will get out of bed. I MAKE myself live. Get some support. I found mine here and with a therapist. Best decisions I ever made. 