Patients Autism Spectrum Disorder
Topic of the discussion
Posted on 7/3/20 6:32 PM
I justjoined this site because I'm really looking for some help.
My son was diagnosed with psoriatic arthritis late last year and it's been a big adjustment for him. He's in his early twenties and living on his own and working now so he's been managing it on his own. He used to be very active and into sports, but since he started working plus the lockdown he has had to put it all aside. His work has taken up a lot of space in his life and he doesn't have time for sports or hobbies anymore. Apparently his flares have been worse and the fatigue is taking a toll on him, he only seems to be able to manage work, sleep, and take his medicine. The medicine takes care of the pain, but the fatigue is overwhelming him and it's now starting to have an effect on his work.
Have any of you have found solutions to fatigue? How do you manage it in addition to work or your daily life?
I told him to get in touch with his rheumatologist, but he is resisting, thinking that he can handle it himself. He won't join any support sites either, so here I am. Is there any hope for him?
Thanks in advance,
Beginning of the discussion - 7/3/20How do you handle fatigue caused by your psoriatic arthritis? https://www.carenity.us/forum/autism-spectrum-disorder/living-with-psoriasis/how-do-you-handle-fatigue-caused-by-your-psori-2171
Posted on 7/3/20 6:50 PM
@JTsDad Hey, I completely understand what your son is going through, my fatigue eventually drove me to take a temporary break from work. I was about the same age as your son it sounds like so I understand the pressure he must be under. A doctor of mine once used an analogy with me that has really stuck: he said that you that to imagine that your life and energy are like a bowl of soup. Every activity we do takes a spoonful of energy to complete, and once you hit the bottom of the bowl there is no more and you need to rest. It sounds like your son is overworked and overwhelmed. Maybe explain this to him and help him figure out a way to plan his days so that he's not overworked? Has he spoken to his company about his condition? I know he may not want to, because I for sure didn't, but it can really help. If they know about it they may be able to make accommodations for him, or at least they'd be understanding if he needs to lighten his work load.
Posted on 8/7/20 7:11 PM
I fully understand how your son must feel too. I am older, but the fatigue is taking over my life now and I can't really control it. I love exercising and going for long walks (on or off the beach, haha) but the next day is killed from the pain so I can only rest. Only somebody with PA will understand how we feel. I hope your son can work with his company to find a flexible solution. Maybe he can work from home more often or they can reduce his hours.
Posted on 8/7/20 7:15 PM
@psori!!pt @ribston1 Thank you both for your replies. My wife and I have been so worried about him and just devastated that there's nothing we can do to help him. We were worried he was heading towards a burn out or breakdown. He managed to arrange with his boss to take a little time off this month as things are slower in August and he has an appointment with his doctor soon. I'm hoping the specialist will be able to change his medicines or help him find some strategies to cope it all.
Posted on 10/1/20 4:26 PM
Thank you for sharing your stories and experiences with us, this is what Carenity is all about. @JTsDad How is your son doing now? Has he been able to get in to see his rheumatologist?
For those who may not have seen this thread yet, do you experience extreme fatigue with your PA? How do you manage it?
@Tgurrola @kevmormit @mbball11 @Tammyfiguera @sofisa02 @Sheldo52 @HodgePodge @beverly57 @jmckee5147 @stward @Twiggi @Kathy55 @Starke @ZACHME @JenniferDodds @Elissa1968 @insaenguihim
Feel free to share your stories and advice here!
Posted on 10/1/20 6:12 PM
Good Afternoon Everyone,
How do I handle my RSA? First I try not to miss any doctor appointments. With the coronavirus last Thursday via video was the first time I saw my rheumatologist sinc January. Every morning I take a warm bath about 20 minutes with Epson salt. I feel moving helps also. I was taking humria every 2 weeks. My doctor just increased it to every week. I’m really hoping it’s help with the arthritis because it really works for my psoriasis. Aside from a little peeling on my palms I haven’t had a outbreak in a few years🙏🏼. I thank you for listening 💝