A long road to diagnosis

I started with psoriasis when I was 14 on my hands and elbows. That was diagnosed correctly and treated seemed to relieve it unless I had a flare, it came and went all the time. When I was 16 I started to have random, severe pain in my right knee. I would end up in so much pain in my knee I could hardly walk. I never knew what I had done to it, it just would happen. So off to an orthopedic doctor who did a scope and said everything looked fine, he couldn't figure out what was wrong. This severe pain in my knee would continue to occur on and off over the years.

Progressing knee pains

When I would have that severe pain in my knee I often would go to an orthopedic doctor because I couldn't stand it anymore. They would take x-rays and wouldn't find anything wrong. Sometimes they would send me to physical therapy. My skin psoriasis continued to flare on and off, sometimes getting really back on my knees, elbows, eyelids, and the back of my heels.

I got married when I was 22 and started to have children, my bouts with psoriasis and psoriatic arthritis continued (didn't have a name for it then), never any answers from any doctors. Finally, when I was 35 years old I went to an orthopedic doctor because I was having the knee pain I always had and I also noticed that I couldn't straighten my knees. When this doctor did x-rays and looked at them he said, "these look like the knees of an 80-year-old woman. They also do not look like knees with osteoarthritis, there is something more here." He thought I had rheumatoid arthritis and did the blood work.

Self-research on psoriatic arthritis

In the meantime, I went home and started searching the internet and found information about psoriatic arthritis. It really seemed to match so when I went back to the doctor and he said the blood work came back normal I asked him about psoriatic arthritis and he said yes that is probably what it is. Still no answer on how to treat it. Told I need to see a rheumatologist, by this time I now have 5 children the youngest two are 5 and 1, I go to a rheumatologist because now I have more than knee pain, I also have severe right hip pain.

Finding new doctors

The rheumatologist I saw said there really was nothing he could do for me about my knees or my hip because I was too young for any replacements. He said, "he has hip issues and he can still walk the golf course." OMG, I was so upset. I went on the internet and looked for options for orthopedic doctors since I realized that I probably needed my hip replaced I carefully watched their video and found one that seemed very empathetic. I got in to see him and as soon as he saw me walk he said, "let's schedule that hip replacement and get you a good rheumatologist."

That day we scheduled my surgery and he referred me to a rheumatologist that arranged her schedule to get me in the next day. She was able to get me on some meds that helped with the pain and flares somewhat but I was in a very toxic marriage and job, stress is my biggest trigger for a flare.

Short-lived remission and managing stress

So here I am today, divorced, but remarried to my soulmate a very caring, understanding man. I have also rid myself of a lot of stress. However so much damage has been done over the years that I had both my right and left hip replaced, I also still need to get both knees replaced. For a bit, after I got remarried I was in remission. Then COVID hit, I'm a special education teacher, and teaching from home along with making sure my youngest two were doing their school work was difficult, we made it through, but more stress.

Worried for the future

I had to find a new rheumatologist because of insurance changes and he has put me on Humira which, taking twice a month, didn't really make a big change, so recently increased my dose to weekly injections. I still get flares, in fact, I am in one right now, and I get frustrated with my body and the time I lost because no one could diagnose me correctly. I worry about what the future holds for me.

I see my therapist once a week and am on meds for severe depression and anxiety. It is hard for me to keep my emotions in check, have trouble sleeping (pain or too many thoughts in my mind). I have two soon-to-be three grandchildren and I want to be able to play with them. I worry that won't happen and I agree with others on this site that people have NO IDEA how hard it is to live with a debilitating disease and have chronic pain.