I started writing a book on here a few nights ago so I'll just keep it simple. I have had P for around 38 years and I believe I've had PSA for at least 2 if not longer. I have a Rheumy appointment at the end of the month set up by my fantastic Dermatologist at Hershey Medical, PA. I have all the great characteristics of PSA up to and including; pitted nails, foot pains, back pains, hand pains, fatigue etc...., etc.... And as an added bonus it travels around my body like a PSA 3 ring circus. Up until recently I have been handling it well with 15 advil a day so I could go to work, but my Dr. said ....umm that's not going to work; you need to see a specialist. So, that's where I'm off to in a couple of weeks. I pray for relief because I'm so worn from all the pain. I'm not the type to feel down and have always had a cheery disposition, but lately I feel a dark mood trying to settle in and I'm quite sure I know what it is. I think most everyone on here can relate when you have to come to grips with this thing for the first time. Growing up With P was, to me, a character builder. This is much different. It looks and feels like a character destroyer. Along with all that's going on, my relationship on 3 years is toast because she just doesn't understand.... you know "you look fine". "Why do you sleep so much? So, I have that loss too. Well, I look forward to getting a move on with this new pet of mine. Time to get it on a leash and start living life to its fullest.
Onset of PsA sucks. There is just no way around that. I’m usually a happy, go-lucky sort but PsA beat the snot out of happy and go-lucky pretty quickly. It gets better than this. It’s feels like it won’t, but it does.
I survived my first months with lots of steroids, Percocet, Aleve and then started Remicade. I upped (with my doc’s permission) my anti depressants, and got a therapist. I was very angry. It’s hard not to throw a pity party for yourself and therapy helped me gain new insight to my destructive thinking. I can’t say that I’m back to who I was, but its a huge improvement over where those initial days of PsA took me.
So sorry you feel so bad Paul, we can often feel we have life pretty much sorted when PsA knocks us completely off course and throws us under a truck!
You are now to see a specialist, which is the best possible thing you could be doing. There are some good threads on here about what to ask at appointments so might be worth a look.
This may sound harsh but if your partner wasn’t willing to even try to get to grips with what you are suffering then, well, you’re better off without her! But that’s just my opinion.
You are so right about P being a character builder when you go through your younger life with it, but this disease doesn’t have to destroy character, it may feel that way now but with the right help you will “leash the beast”.
You are allowed to feel bad mentally, this is not an easy road, and we all have different ways of grieving for the loss of our former selves, our freedom from pain, our loss of mobility, but you will get there in your own time in your own way.
Good luck
Paul, I love your positive attitude, even though you are hurting in so many ways. Your comment about having a new pet, and needing to leash it is priceless! Thanks! Yes, we are all trying to leash this beast.
In the Book Review section above, you will find a recommendation that I made. The Kindle version is a bargain. (If you don't have a kindle, you can download a free kindle reader for your pc.) It might be a good idea to do some research before you see the specialist in a couple of weeks. That way you can go armed with questions, and have an preview of what your treatment options might be.
Oh my. I know. I spent most of my day sleeping yesterday. I've never had to feel quite like this. My family doesn't understand what I'm going through. I was up to 6 advil a day when the Rheumy told me I couldn't continue that way. Now I take 4 different medications plus trying to fit vitamins in between, which is a juggling act. I try to ensure I get a lot of them by changing my diet.
This is a frustrating disease and exhausting....on top of the pain, I've started a new job which is another stress but things are looking up. They will for you too. Trying to find the meds that work is tough. I'm still working on that too.
Welcome Paul! Onset sucks. You're definitely on the right track with dr's, etc. Hang in there!
If your partner won't support you during the hard times, you are probably better off without them. The stress of a bad relationship can make thing worse.
Relationships CAN thrive in spite of PsA. I've been married 19 years, and have had PsA since well before we met. You have a lot to give to a relationship, in spite of your struggles. Remember that.
You've already received many wise words from the group. Living with PsA isn't easy- but once you get the hang if it it all changes and you have to relearn anyway, so try not to stress. LOL Seriously, though, it sounds like you're on the road to medical treatment that will get you where you need to be. It takes time, finding the right medication or combination of medications, tweaking said medications, and more time, but in the end is totally worth it. My PsA rollercoaster had me hiking, then limping around, then using canes, then crutches, then a wheelchair, and now, thanks to finding what works for me, I'm going on weekly hikes with my family - the longest so far, about five miles through the hills of CT.
I wish you well on your journey and look forward to seeing you around the board!
Hi Paul, I had PsA many years before I was diagnosed. It was a relief when I finally got the diagnosis, because I could hope for relief. I still have bad days, but I am so much better now with treatment. I have substantial joint damage from the years of not being treated. Some things you try may not work, but when you find something that gives you relief, your dark mood will begin to brighten. As Amanda said I wish you well on your journey. It truly is a journey, try to look forward to a better quality of life. There may be set backs but you are headed in the right direction.