I had a moment of realization this morning. I don’t KNOW that I have psoriatic arthritis yet. I’m clinging to this diagnosis, yet I haven’t seen my xrays. I haven’t seen the blood tests. Who knows what they say? I know something’s wrong. I know it’s not all in my head. But there are so many things it might be.
Let’s lay out, 100% what we know about me.
1) I have psoriasis. My elbows and feet are flaky, itchy, painful, masses of skin problems. I’ve had psoriasis for as long as I can remember. FOREVER.
2) My hands hurt. My hands hurt every morning when I wake up. It takes an hour of slowly moving my fingers to be able to get up and brush my teeth and hair. To get dressed. Sometimes I can’t handle buttons or zippers at all. Some days my husband has to open doors for me – not because he’s a gentleman, but because I can’t turn the knob on my own. Sad but true: I didn’t quit smoking to be healthier. Or to save money. I quit because I couldn’t consistently use a lighter or matches and holding something so narrow hurt my joints.
3) I have hyper-mobility syndrome. Every joint in my body extends past the normal set-point. This is partially why no one believes how much I hurt… my joints are still moving in the normal range of motion! But, doctor, they used to move MORE. Apparently that’s not enough.
What I know, 100%, is that I hurt. Sometimes a little. Sometimes a lot. Movement is good – to a point. Resting too long makes my joints stiff. I’m finding myself more frequently getting feverish without being sick. In general, my temperature is higher than it used to be. The shapes of my joints are changing. The color of my skin changes with the level of inflammation. When I hurt, my hands swell to twice their size or worse. My fingers look disgusting.
So, what’s wrong with me Doc?
I’m clinging to psoriatic arthritis because even though it’s life-long pain, there are treatments. It could get better. At the very least, it could stop getting worse. That’s all I’m asking for now – that today’s pain is the worst it is going to get.
Praying you get some answers soon. Keep us posted.
Thank you. The soonest I can see a doctor is at the end of October.
I’ve had psoriasis for over 20 years. And the arthritis that comes with it even longer. Please know that you will never be alone in this, there are others of us out there. *HUGE very gentle hugs to you*
he huge very gentle hugs are probably the greatest gift I have ever been given. It’s so hard to explain to people that I don’t shake hands not because I’m rude or afraid of germs… it’s just that it HURTS.
It is hard, and a lot of people will never understand just how much pain is involved. And I won’t even get into the itching part. There are mornings when I can’t open a jug of milk because there is just not enough strength in my hands. The Mate is used to me walking in a a jar or jug or bottle and wordlessly handing it to him. And I’m supposed to be HIS caretaker.
I hope your doctors can find some kickbutt medicine to help you not suffer so harshly. I would not wish this on my worst enemy, even on my worst day. There are some things that are just too cruel to wish on anybody. Okay, once in a while I wish a mild, brief case on people who really grind my gears. But that’s it.
My husband knows the drill too. He’s got a similar problem, though, in his back. In some ways that’s the greatest gift, in others it’s a huge curse. He knows how crippling pain the pain is and how it feels to be young and have no one able to believe how bad it can be. Yet I wish I could take his pain away, every single day.
I’m so very sorry that you’re in the medical mystery tour. You’d think it’d have some good weed, but no
Wow. Wow. My husband has pain issues and so do I. Makes day to day life a bit challenging.