I'm not really sure what, if anything, triggered this, but I seem to be having a combination of a flare-up of sorts and an increase in symptoms I believe are caused by the Plaquenil.
So far, I'm still tolerating the Plaquenil, but I plan to call my rheumatologist next week to discuss the side effects and see if there's anything I can do to help relieve them. I'm hoping he will at least give me a prescription for Compazine, a drug I took for years while battling my chronic stomach ulcers.
The nausea started off pretty mild, but it's been getting worse over the past 10 days or so. I haven't thrown up yet, but the number of times that I feel the urge to vomit and have it come at least partly up keeps increasing. Not a pleasant sensation, although a somewhat familiar one from the years of nausea from the ulcers. I have a small number of pills left over from the last time I had a prescription (a couple years ago), and I've taken a few and they do seem to help.
I'm also having lower abdominal cramps, which I didn't realize were a possible side effect until I decided to decipher the really small print pharmaceutical info that came attached to the Plaquenil bottle. (I'd gotten an original bottle of 100 as part of my prescription for 270 of the pills.) Since we'd been having a tummy bug going through the house, I had attributed the cramps to that. But when the other tummy bug symptoms went away (trust me -- you don't want details! :), I didn't understand why the cramping didn't.
I'm also having issues with body temp sensations. Not fevers, but one minute I'm so hot I'm sweating and just a couple minutes later, I'm shivering. Last time I was on Plaquenil (for maybe 10 days total), that kicked in early on and was much more severe than I'm currently having. But it's still uncomfortable and adds to my fatigue.
I think my energy levels are about as low as they've ever been, other than the first week or so home from the hospital. I haven't left the house this week other than for acupuncture appointments (2) and a visit to my internist, where we discussed my pain relief options. But that's another post for another time. Suffice it to say that I wasn't really happy with my options, which included long-acting painkillers that would essentially make me unable to drive myself anywhere, ever.
Although the official "anniversary" of the start of this illness isn't until June 1, I've pretty much been sick since my first round of pneumonia that hit me in early March 2007. I didn't really start feeling human again and able to get back to socializing and Ellie's playgroups until mid May, and even then I was somewhat low energy. And then I got sick again June 1 ...
I need to wrap my mind around the idea that I may never be fully well again (although I sure hope I get better than I am right now!), and learn to accept it so I can learn how to cope with it. Other people manage it, eventually, even if they never get back to their former selves. And I need to find a way to do that too, even though I will continue to hope that my illness is temporary and I will ultimately recover.
I did make my internist laugh when I saw her Wednesday. Once a year, the Portland Clinic makes you fill out a form so they can update their records. Typical stuff: chronic conditions, medications, why you're there that day, etc. Under the chronic conditions, I listed my asthma, allergies, hypothyroidism and "Mystery Illness."
She got a laugh out of that one. :) I'm always at a loss about what to say when they ask why I'm there that day. "Well, I've been sick since June 2007 and was hospitalized in July 2007 for 8 days, and I've seen a ton of specialists and no one is sure yet what the heck it is I've got, and this is a follow-up on my ongoing illness."
My internist told me to just start telling them I'm there for "joint pain." :)
She also laughed with me when I told her the rheumatologist said last time I saw him that if what I have is not chronic parvo, that then he would diagnose it as a mild case of Lupus. "Mild?" she said. "You've got the worst symptoms of anyone I've ever seen with 'mild' Lupus!" We finally decided he meant that it was mild in the sense that none of my organs have shown any sign of involvement yet. But the involvement of my joints and my pain and fatigue levels are anything but mild.
I asked my internist whether it was possible that I have Fibromyalgia in addition to whatever the hell else it is I've got. I've asked her that before and in the past, she was pretty negative. But in addition to all this joint pain, I have tender spots pretty much all over my entire body. If you touch me, it hurts where you touch.
This time, she admitted I probably did, but that it was a "comorbidity" and that in cases like this, they focus on the main problem and hopefully that treatment also helps with the fibromyalgia. She did ask if I wanted to try Lyrica, the new drug approved for treatment of Fibromyalgia that the ads are all over TV and magazines for, but I said no. For one thing, I've already got enough pills to take right now. For another, the list of side effects looks pretty nasty and apparently are very common so that's not somewhere I want to go right now.
I do strongly identify with the TV commercial where a woman stands in front of a mirror and says something like, "If only you could see what I feel" and then, in the mirror, you start seeing these massive bruises around her neck. I can definitely identify with that. So many times, Ellie touches me and I cringe because it hurts like she's pressing on a bad bruise, but when I look under my clothing, there's no bruise there.
4 months ago