How to explain what PsA feels like

I recently found an interesting blog about how it may have felt to have Rheumatoid Arthritis. I decided to alter the article quite a bit and make my own little blog on what it felt like to have Psoriatic Arthritis. Or how one may explain it to someone new that is trying to understand, without having to go into tremendous detail…...

Trying to explain what Psoriatic Arthritis feels like:

It causes pain similar to a sprained or broken body part. Comparable to the physical trauma felt after an accident. At times, the inflammation and soreness is so intense, a brace or other movement assistance (crutches, cane,wheelchair, ect..) are necessary to perform even simple tasks. It can happen to anyone at any given age. The misconception is only the elderly get arthritis. NOT TRUE. There are patients as young as 3 years old. (usually noted as Juvenile Arthritis).
Psoriatic Arthritis (PsA) is an auto-immune disease that causes joint damage, tissue damage and scaling rashes on both the outside and under the skin. PsA has been known to damage hands, feet, knees, spine, eyes, heart, lungs, kidneys and liver. It is an inflammatory disease, so the pain is brought on when the immune system goes haywire and begins attacking the bodies' own cells. This inflammation can cause frequent headaches, migraines, fevers, nausea, and obnoxious fatigue. Like the Flu, muscle weakness is very common, but unlike the Flu, it will come back every month, week, or is some cases daily.
PsA is a systemic disease that can affect any part of the body, even organs. When the disease is active or "flaring" a patient may experience bouts of complete exhaustion, similar to how the body reacts after intense, strenuous activity. They may also experience a sense of physical exertion, and the feeling of being "winded".
The disease is unpredictable, flaring at any time of the day or night without warning. A patient can be fine one moment, and the very next overcome with symptoms. With PsA, everyday becomes a constant manipulation of tasks. Managing both the physical and emotional effects can be taxing and frustrating. It is important that the patient finds a good support system. It can make a big difference in the ability to cope.
Unless you have Psoriatic Arthritis, you can never know exactly what a patient endures. Although, perhaps now you can empathize a little more by relating your experiences of the most common characteristics of the disease.

Hi Jen. This is a great post. I am always asked what is PsA. When I try to explain what it is and feels like, people still don't seem to understand.

Good job nailed it! People get mad when I say I can't do something or I start a task and have to stop "right now" because I'm suddenly overcome. From now on I will refer them to your post. No one ever believes it is as painful as a traumatic fracture some days.:(

Thanks! I shared it to my Facebook. :slight_smile:

Well, that blog certainly hits the nail on the head! Well done you :slight_smile:

I shared of FB. Thanks for this.

Excellent blog Jen!

Hi Jen, when I saw this I wanted to hug you, it is a brilliant explanation. I wish I'd had it to show my friend who back in August called round to see me on a 'bad' day. I was sitting in the garden with my feet up trying to get some relief from the pain and she just stood there and told me how well I looked and she couldn't see what the problem was!!!!!!!!!!!!!! This then led me a while later to writing an open letter for all my friends and family that was also inspired by reading something a lupus sufferer had written. It is quite lengthy so I'm not going to hijack your blog but will post it later.

hi jen

this is the best description i ever read. thank you

Good description of our disease, Jen! The thing that kills me the most is exactly what Jules commented--people think we look great so they can't understand why we're saying we don't feel like doing something. Everything--almost all the time--is a chore. Constantly having to fight through the fatigue and weakness caused by feeling constant pain somewhere on the body is a real challenge. On top of it, most of us are people who like to be busy and active, so we try to ignore the symptoms and keep living a normal life! I danced all evening at my son's wedding last year, knowing I'd feel horrible the next day. But, I wanted to enjoy the moment, and exercise is a good thing. But, when people see you doing these things they think you're not really sick and maybe you're just looking for sympathy. My mom (89) needs my help and is constantly asking me to do things for her....not seeming to care that I have a lot on my plate already with two part-time jobs, a sick husband, kids and grandkids that need me daily, and P and PsA. Finally, I just started telling her, mom, you need to ask your other kids to help you more. I just can't do it all. But she has bad osteoarthritis in her hands along with typical symptoms of being elderly and she doesn't see or understand how I feel. It's just so hard for people to understand what we're going through!!!