Patients Autism Spectrum Disorder
Topic of the discussion
Posted on 8/3/20 5:23 PM
How are you doing?
Psoriatic arthritis, like most chronic conditions, can challenge aspects of life and make one feel frustrated. I thought today we could discuss these challenges.
What is the biggest challenge you face while living with psoriatic arthritis? Is it the pain, the fatigue, the stiffness, or the psoriasis if you have it? Have you had to change aspects of your daily life or routine because of your PA? How do you cope with these challenges?
@Dltrj25 @Spiritaelove @Simplyq @Ksbiggers @AnnetteRoberts @kcsicsek @Mlbg601 @Cathywilson87 @Ginadw @Peggymae @venessahudson @Kaykayloveee @blade697 @sirtaki @deuce26 @juliusnba @meganfuzzell @Tgurrola
Feel free to share here!
Beginning of the discussion - 8/7/20What is the most frustrating or difficult aspect of living with psoriatic arthritis? https://www.carenity.us/forum/autism-spectrum-disorder/living-with-psoriasis/what-is-the-most-frustrating-or-difficult-aspect-of-living-with-psoriatic-arthritis-2293
Posted on 8/7/20 7:13 PM
@Courtney_J I think this has been brought up in other threads, but for me it's the chronic fatigue. I think because PA isn't a "visual" condition, some people just assume that I'm fine because they can't see anything overtly "wrong" with me with their bare eyes. People don't understand how debilitating chronic fatigue is and they think that if I just take a nap I'll be healed and ready for action. I can't be as active as I used to, I feel like my body has just like given up on me. This and the fact that I can't do anything to change the fatigue is what really frustrates me and makes me want to jump off a cliff some days.
Posted on 8/7/20 7:18 PM
@ribston1 I agree, I've seen what the fatigue does to my son and I feel so helpless because there's nothing I can do to help. He's lucky that his company is being understanding and seems to be willing to make some arrangements for him, I can't imagine what it is like for those who don't have help from work or family.
Posted on 10/1/20 5:37 PM
To tell the truth I have not been dealing with psoriatic arthritis very well lately. COVID 19 has kept me at home and I have been depressed. I have not done much walking and I am stiff because of this. Now it is raining and cold and I am even more stiff and in pain. I actually thought I would sleep more, but have not been able to because of the pain. I have a doctor's appointment and I think she is going to prescribe bios. I hope! Methotrexate didn't do much for me. Humors didn't either. So I hope she haa something good in mind. What do you all think of Modafinil for the fatigue? The pain and swelling cause a major amount of basically exhaustion.
Posted on 10/1/20 5:39 PM
Humira not humors....spell check... ugh