Hi all, and thank you for welcoming me to the group.
I was diagnosed about a 5 months ago with PsA and Fibro.
I am currently taking 10mg of presidone a day and have been sicne June and it has really helped keep things from being too extreme but i have gained 25lbs so that sucks. I am also on 400mg of Lyrica and have just failed to tolerate the weekly dose fo MTX, so my rheumy is now going forward with the biologics. It will all depend on what my insurance is willing to pay for but i wondered what the thoughts were amongst the group about which ones seemed to work best? was there a discernible difference between getting the infusion and the weekly shots?
I also wanted to share that i am pretty depressed. I just had to turn down a teaching job because i could not have managed all the driving.My drs cant seem to get my pain under control. I am 800mg of ibuprofen and also hydrocodone and as i write this the pain in my hands is excruciating.
I have tried acupuncture, Neurological chiropractor, i am an holistic supplements to heal my "leaky gut" and i am on a completely anti inflamatory diet . Anything fun you can think of eating, i gave it up.
I just feel like this disease is like one of those slow moving Zombies in the movies, i keep flinging things at it but it just keeps going. I am an artist and a writer , i need my hands,( we all need our hands!) in a matter of 3 months my left hand is almost useless and now the pain in my right is tears inducing. It is so hard because as you all know people look at you and think you are fine. Unless i have my hands wrapped in those blessed heat wraps from wallgreens nobody would know that i'm dealing with this. And now my feet and ankles have gotten in on the action, i think they were feeling left out!
I just cut off all my hair, it was beautiful naturally red and curly hair that fell past my shoulders and down my back. But i just couldn't style it anymore. My hands and wrist cant hold a hairdryer for that long. And after losing big clumps of it to the MTX i decided to cut but now people are asking me , "Oh why did you cut your beautiful hair" and it makes me want to cry because i didn't want to, i had to. screw this whole bloody disease.
Forgive me if my complaints seem vain or superficial but a big part of who i am is disappearing because of this disease, i look in the mirror and i don't recognize myself. My life as you all know is getting smaller. I have to rely on people in a new and irritating way- i want to be able to open the bloody jar of pickles myself!- and the outward signs of this out of control disease that nobody seems to be able to halt is all these changes to my appearance.
I guess i'm just wondering how you all cope with this. i don't want to become more depressed or angry which i can feel myself becoming i know there are folks with way worse diseases but i am just so mad at my body for attacking itself. Thank you for listening its good to vent to people who understand. I m looking forward to being part of the community.