Begin reading with Part 1
The Long Roller Coaster, Part 2
The more I learned about rheumatoid arthritis, the more confused I got. RA should be treated with NSAIDs and DMARDs or a BRM. Why did I not receive one of those?
Instead I received a pain killer. I don’t like taking pain medication. It’s easier to deal with pain than with the side effects of medication. Breathing is more important! I hate it when my throat swells up so much that it’s hard to breath! I’ve had bad reactions to three different kinds of prescription pain pills, and I’m not willing to try another. First time I ever got mad at a nurse on the phone.
The more I learned, the more I was convinced that the guy had been wrong about my diagnosis. He said that I had RA, but was treating me for fibro. I’m not convinced such a thing really exists. It’s easy to explain all the symptoms without inventing a non-disease.
- I was tired because I’d had four babies in five years (and three years later had one more). Five kids in eight years would make anyone fatigued!
- I did not get a good night’s sleep because 1) children calling, “Mommy!” in the middle of the night wakes me up, and 2) every time I rolled to either side, the pain in my hips (bursitis) awakened me. Nobody feels well-rested when they’re awake more than they’re asleep.
- As to the tender points test, I wanted to scream, “quit poking me and it won’t hurt!”
- I learned that lack of sleep can cause a number of problems, including muscle pain.
I’m not the only one who doubts the existence of fibro. Even one of the doctors who came up with diagnostic criteria for fibromyalgia has backpedalled. Everything I read led me to believe that fixing the pain in my hips would alleviate most of the fibro symptoms, and teaching my night-waking child to go back to sleep without my assistance would help with the rest. That has proven to be true.
At my follow-up appointment, the PA entered the room and announced, “It looks like you’re medication sensitive.” Already I wasn’t sure if I liked the guy, and now he blamed me for his prescribing error! I said I was allergic to one pain medicine. I didn’t want another. He insisted that I needed to take pain pills all the time. Not a good way to start the appointment.
He went over my lab results from the previous appointment – I’d received a copy in the mail, so already knew that my ESR, CRP, and RF were well within normal limits, and even knew what that meant. I was told to take glucosamine, get shoes with better support, and phone if I wanted a referral for PT on my shoulders. Why I couldn’t have a referral right then, I don’t know. I was offered pain medication in a patch, but declined. He just didn’t get it: I don’t want narcotics! So I received instead a prescription for a topical NSAID gel, was sent for more lab work, told to come back in three months, and rushed out the door. I drove this far for that?! I left very frustrated that I had been told that I have RA, but was not being treated for RA.
I hate roller coasters!
originally written as one huge post, and published Jan 15 on the Arthritis Foundation’s host, I have broken this into a number of smaller posts