Still Running Into Brick Walls

I'm 27 years old and officially hit my 15th year of living with PsA. It took 2 years to get a diagnosis when the inflammation first happened. I was on a maximum dosage of naproxen for 5 years, combined with DMARDS. Sulfasalazine didn't do anything, methotrexate made me sicker than the arthritis, hydroxychloroquine made me dizzy...the crazy part was that naproxen was doing the job. I had almost zero pain, but the rheumatologists were concerned because there was still inflammation so throw all the meds at it!

Eventually, I had to stop taking NSAIDs altogether because my gut was being eaten away from them. I was waking up in the night choking on acid (despite the best antacids they could prescribe) and there was a litany of food I could no longer eat without needing a bathroom nearby. They diagnosed it as IBS, but reading on here, I wonder if maybe Crohn's hasn't reared its ugly head. The thing is, I see so many specialists, I don't want to add another one to it. So I eat well and manage the symptoms as they come.

The arthritis eventually spread to my hip, SI joints, and my spine. For the past 6 years, I had relatively few flare-ups and the pain was manageable without medication, but in the last year, everything changed. My back is so sore, I can't bend over some days. I can't sleep through the night, my knee gives out every day, and where I used to be able to hike mountains, I can't even walk more than 20 minutes. There are better days than others, but it's so frustrating not to be able to live my life the way I used to. I'm a very independent person, and feeling so restricted is difficult. The specialists and I have been discussing starting biologics for 3 years now, and I finally decided it was time to start them. My rheumatologist agreed and I thought I would be on them by this month and now she's decided to wait until June so she can have an MRI of my SI joints, along with those of my knee. I was devastated! I almost cried right there in the office. I thought I was going there to be cured of this infernal pain, and I'm told I have to wait? Not only that, but she made a comment about me having to work on my leg muscles. Excuse me?! I can't walk some days, how exactly do I work out? When I explained the level of pain I was experiencing on a daily basis and how it was affecting my life, she seemed shocked. She said: "Oh, but you don't have any inflammation in the knee right now." I didn't, but when she looked at it, she told me about enthesitis (inflammation where the tendons and ligaments attach to the bone). I had never heard of that before until I found this website. Who knew that after 15 years, there could still be things I didn't know about PsA?

This journey has been a crazy one. Pain is a constant, along with fatigue and brain fog. It's difficult for other people to understand because I look fine on most days. The psoriasis only happens right before a flare and occurs only on my elbows. I'm very fortunate that way, but it's difficult to explain to people that because I've lived with pain so long, I may look okay, but I'm not. Or when illnesses seem to build up and they think you're a hypochondriac...just rude.

For now, all I can do is wait. I have a cream that helps with the pain and I take an anti-inflammatory on the worst days (always asking myself: What do I want to live with today: acid-reflux or excruciating joint pain?). Thankfully, I have an amazing support system at home and wonderful, understanding friends. In the meantime, I'll be here, anxiously awaiting approval for biologics.

Sara