Today is my birthday. It has hovered around 22 degrees all day. Donny had his quarterly meeting in Dallas. Needless to say, we put off celebrating until later this next week. Those aren’t the only reasons though. Starting about 17 years ago Donny would have flare ups in his ankles and sometimes knees. It always seemed to happen around Halloween or Thanksgiving. Whichever joint it decided to hit it would cause redness, swelling and intense pain. It would last a few weeks and then just go away until the next time.

He started going to doctors. He had x-rays, blood work, you name it he probably had it. We were referred to an orthopedic doctor. He was told he had gout, but gout medication only made it worse. The weird pain would always just stay in his lower extremities and only occur once, maybe twice, a year. About a week ago his shoulder started to hurt. It then moved to his left hand. It was so swollen he couldn’t even bend it. When his hand started to get a little better it moved to his right knee. It swelled up the size of a cantaloupe and he could barely walk. The pain was intense. We were trying everything. I have googled his symptoms for years trying to find an answer. For a while I thought that it might be lupus. He had some symptoms, but not all of them and not the ones that were major markers for the disease.

I gave it one more try and did the exact Google search I have always done and this time the first 5 answers was something I’ve never even heard of. I clicked on one of them and started reading. I would bet everything I own that this is what he has. It’s called Palindromic Rheumatism. He checks off every single box. I also found a blog that a women writes about her battle with PR. Turns out it’s not very common and can be hard to diagnose. It’s different from RA because it hits hard with extreme pain and then basically goes into remission until it decides to strike again. There a few prescription drugs that help, but some have horrible side effects and getting the dose right can be tricky.

Last Saturday was particularly bad pain wise. I told him that I was going to make him a doctors appointment first thing Monday morning because we needed a referral to a rheumatologist. He was able to get an appointment on Monday. When we went in they pulled up his last blood work and told us that because his blood work didn’t warrant a referral they didn’t think they could give up one. One thing I have learned along the way is that if you don’t advocate for yourself nothing will happen and I was not going to let him leave the doctor without a referral. I KNOW doctors hate when a patient comes in and basically says, this is what I have and we need to treat it, but that’s exactly what I said. Luckily this doctor had heard of PR and agreed with me that this is presenting as exactly that. So now we are just waiting for the Rheumatologist to call us.

Here are some of the remedies we have tried because basically when Donny is in so much pain we will try anything. I chopped up avocado seeds and mixed them with alcohol and let them sit. It does work, but not for him. He takes supplements that take the edge off a little bit. He takes NSAIDS, but those can wreck your gallbladder so we have to be careful. He has started on a high dose of Vitamin D. There is an arthritis cream that my friend’s mother uses for her RA that I picked up for him tonight. My landlord has a friend whose son had very similar symptoms and the hospital told him to take Claratin everyday so I went out and got that today. I normally don’t talk to my landlord about stuff like this but I got locked out of the house today and had to have her come bring me their key. There are many other things we have tried throughout the years. These are just the most recent. Thank goodness we kept the crutches from one of his really bad flares because he’s back on them.

From more that I’ve read they don’t know the exact cause of why this happens. One of the theories is that it could be something in his diet that triggers the attacks. I found this book that we’ve been looking through. The hardest part it the trial and error because it just seems like it takes so long.

I’m hoping that something works soon. It’s so hard to see someone you love going through this.

I did end of having a perfectly good birthday though. I didn’t do anything and took a nap which was heavenly and the perfect weather for it.