It’s been about two years that I have been diagnosed with Palindromic Rheumatism. PR acts like Rheumatoid Arthritis except in two important ways. One, RA is bilateral where PR affects whatever joint it wants. RA also will provide structural damage to the joints where PR doesn’t. Treatment is the same and pain is the same; however, because of those two reasons, I’m not complaining about having PR instead of RA. There is some disagreement if there are two separate diseases. Some believe that that they are, but in more than 40% of cases PR will develop into RA. This makes some believe that PR is just an early stage of RA.
Before I started treatment two years ago, I was in pain everyday. A different joint would flare causing immense pain. It made me think that I would have to start early retirement. After being diagnosed, the pain lessened. Flares, the intense moments of pain in the joints, decreased in number. For the last two years, I can count my flares on my hands. That doesn’t mean they are less intense; they are just less frequent. This leads to me not looking sick so people don’t think I am.
PR still has a large say in what I do. These are the ways:
- Chronic Fatigue: It is not as bad as it was before treatment, but it is still bad. Mainly, because sleeping is hard. If I sleep too long in one position, I will wake up in pain and not be able to move certain joints, most often the shoulder. Also, I find I wake up sweating on most nights around 2-3. We keep our bedroom really cold. When I wake up like this, I’m not fully rested but I can’t fall back asleep. This leads to a cycle of no sleep.
- “Fake Flu”: Some days, I feel like every joint is achey. They aren’t flares, but they are sensitive to touch and just overall ache. Also, on these days, I tend to be hot and even have an slightly elevated (but not feverish) temperature. This happens couple of times a month. It slows everything down and contributes to my fatigue.
- Minor Flares: These are flares that don’t stop me from doing anything but sure make me uncomfortable doing anything. Sometimes the joints turn red and swell, but they are still movable. They just hurt to move and hurt to touch.
- Major Flares: This is when the joint feels like it is breaking apart into a thousand little pieces. This pretty makes me immobile and sidelines me. The pain is more intense than any other pain I’ve ever had. Two weeks ago, i had one last only a couple of hours. I went to work, it was in my left shoulder so I could keep immobile. I had to dress in a dress shirt because putting on my undershirt hurt way too much. However, last March, I had one that lasted 48 hours. This one affected all four shoulder joints (it’s usually just the glenohumeral joint), and, for the first time, I got all the muscles involved. This was a state testing date. I tried to come to work. I was sent home. One administrator saw me and thought I was going to pass out from the pain. Luckily those don’t happen too often anymore.
A major flare in any joint is a horrible experience I would only wish up on terrorists and murderers. Minor flares vary from joint to joint. Workhorse joints such as ankles, knees, elbows, and shoulders, slow me down even with minor flares. Hands and hips, while altering how much I can do, I can most of the time live and work with minor flares.
As far as treatment goes, I have been prescribed hydroxychloroquine. Because of my greatly reduced number of major flares, I’ve responded really well to this drug. When I first started I didn’t have many flares at all. Now, I have more, but not enough that I feel I need to change anything. I also take naproxen (at a higher dosage than over the counter) as needed for pain.
Of course, I’ve tried the holistic measures. Turmeric seems to either have no affect or an averse affect. I’ve taken it for the last month which has been filled with minor flares and the fake flus. Fish Oil has the same (lack of) affect, but I don’t take it for that reason anyway. I’m not against holistic medicine, but there does need to be more research that targets specifically RA and PR’s types of inflammation. Let’s face it, India has a large prevalence of RA even though turmeric is used more in their cooking than in the US.
Predicting flares is hard. That major one written about above came on all of a sudden. I woke up fine at 4 am. At 5:15 am, I was basically crying from the pain. The left shoulder flare I wrote about earlier came after I cooked a risotto in which I had to stir constantly. Except I never used my left arm. It should have been my right arm that hurt not the left one.
Also, I refuse to let PR when. Now, some days, I do feel like a pine-cone is pulling apart my joints, but that doesn’t mean I’m afraid to do things when it doesn’t. I belong to Facebook groups in which people say they don’t do things because they are afraid of bring a long a flare. I believe flares happen regardless of what you are doing. That is what separates RA & PR from osteoarthritis (or old people arthritis). Yes, using a joint in a minor flare can make it develop into a major flare, but to not do anything because of the fear of flares is to be a prisoner to the disease.
When I feel good, I need to take advantage of it to live.