There may be legions of us with rheumatoid arthritis but it’s the overlapping syndromes that make each of us a special case.
I was lucky enough to have one doctor for more than 20 years and he was able to catch quite a few of those diseases by the complaints I either told him in person or called in to his long-suffering nurses.
To date, I have RA, , fibromyalgia, chronic fatigue, a mild case of Raynaud’s Disease, and very occasionally I test positive for lupus.
My editor asked me several weeks ago what symptoms make me realize which thing is elbowing its way to the forefront of my attention.
I had to think about that one.
I have an excellent pain management doctor now so most of the time my spine is in pretty good shape for me, but I can tell you when weather changes are on the way from two things.
The RA makes my hips, elbows, and shoulders hurt, and the fatigue makes it extremely hard to stay awake. Today was a wonderful example.
We are between two arctic fronts. Today it was in the 30’s all day, but freakishly, tomorrow it will be around 60 degrees in late afternoon, just before another front comes shrieking down from Canada. On Wednesday morning, rain turns to freezing rain turns to sleet turns to snow over about six hours.
I haven’t ever mentioned I swear, but the first three days of this week made me want to really exercise my grasp on cussing. That is, if I could have stayed awake long enough. I came out of my coma about 5pm to watch the news and guilt myself into writing this blog no matter what.
I had two friends call me while I was trying to get my heart to pump blood through my body. One call was from a long-time friend whom I am visiting in a few weeks.
Our health problems are similar so I’m going down a few days for some R&R (sitting in pajamas and perhaps having a milky way martini or two while we chat. Her husband will grill steaks one night).
Anyway, during call one, the knees checked in along with a rhythm section provided by both hip joints.
My lower back chimed with “Hey Sandi, you may think you have us controlled down here but don’t act so confident. Stand for too long anywhere or walk up more than one flight of stairs and we will remind you why you give the best drugs you own to control us. We are not as stupid as you may think.”
It’s true. I love to go shopping at one particular store and by the time I get through this football-field sized store, my right outer leg is numb and my back is hurting so much I can’t believe I take pills to control it. By this time I’m using the cart more as a walker than a cart.
If I use the handy electric carts on really bad days and it’s then my neck reminds me I abuse it by making it look up and down the aisles. I have to go home and lie on one of those horseshoe-shaped pillows and whisper bad things quietly to it.
If for some reason I am sitting in the floor, I look like a toddler getting up and I have to bend very carefully not to use the really good words in my arsenal.
Later, talking to my best and longtime friend who has osteoarthritis and so knows a little of my pain helped my right elbow and shoulder get into my body’s conversation. For some reason, I pointed my right arm and the pain in my elbow nearly made me scream. While I was waiting for that to subside a bit, my shoulder whispered loud enough for me to hear that using it was a stupid idea too.
Raynaud’s shows up when my hands get cold. I have gloves in every jacket I have on a hanger, and I’ll grab a shawl to keep me warm around the house. I bought the best gadget from a website last year. It’s an electronic hand warmer. It doesn’t vibrate so it only warms up and keeps my hands warm and has two different levels. You use a phone charger when the battery gets low.
I buy those little chemical foot warmers, but it takes two pairs of socks to keep my feet from getting too hot.
The hardest one to control is every bit as hard to diagnose and treat.
When I had complained to my doctor long enough and had labs with the correct answers in them he explained to me why when people poke me it hurts so bad for so long and why my chest would hurt like I’d been shot by something if people tried to poke me there. I had real, by god, diagnosed fibromyalgia.
I was different but I could blame the nerves for it, the fatigue (yes I have TWO diseases causing fatigue. Well, tiredness, Fatigue you and the horse you rode in on.)
Chronic fatigue will sneak right up on “overdoing it,” slowly passing it until, instead of a day or so of rest after a big event, I’m down for weeks. It’s what I’m fighting now. When the ole CF jumps into the driver’s seat, the fastest speed I go is slow. My attention span is nonexistent and I will fall asleep anywhere I can. It’s not pretty.
The biggest irony and the scariest thing is with the chronic fatigue. My beloved, now retired doctor, who had specialties in rheumatology, immunology, oncology and allergies, did one more set of genetic tests on me before he left. It was so complete, he brought in a brand new book to help him explain some of the interesting parts in my genetic code. The first thing? I have one gene for narcolepsy. Two and I’d have it.
My husband has always marveled at when I fall asleep. I do it fast. That could be part of that gene doing its work. Add it to chronic fatigue I fall asleep and I sleep for a long time.
I’m retrying a drug at a lower dose for fibro, and I’m hopeful in time bumping into things and someone grabbing my arm won’t hurt so much.
There is a new test available for people who have only had chronic fatigue for three and a half years or less. That’s great. I was diagnosed the old fashioned way – same symptoms for a set amount of time.
Well it’s time to lie cozily on the electric blanket we have placed well protected under a mattress cover and bottom sheet, and close my eyes in the knowledge most of my joints get a little heat therapy before it automatically shuts off. I’ll be asleep soon.