Friday, February 12, 2016
Thursday, February 11, 2016
“I’ve been meaning to call you,” my doctor said as she opened my file.
What? Call me? She never calls me, unless I call her first. What possible reason could she have to call me?? Why did I come in today?? I DON’T WANNA KNOW!!!
A-hem. I can’t be the only one who reacts like that when hearing that your doctor had plans to call you, can I?
She then told me that the blood test we had done to check my menopausal-or-not status had come back. And it’s official. I am in menopause.
This was no surprise. My body had already told me.
Sometime in late November or early December, someone flipped a switch and I started feeling different in a number of ways. Yes, including hot flashes, which are more like bake flashes. It feels like someone turned up the temperature on my insides several times in the middle of the night, but never caused me to sweat. Very strange. But these weren’t the only symptoms and more about that in a bit.
I did a bit of research on menopause and RA (because research is my big name). It appears that early menopause is associated with developing RA. I didn’t know this. Menopause itself may be associated with an increase in symptoms in some women there doesn’t seem to be any clear evidence that it positively or negatively affects the disease.
Sometimes I wonder whether the lack of clear evidence about an awful lot of things related to RA is simply because no one has bought them important enough to study. Such as the effects of menopause on RA, whether diet can control the disease, rather than symptoms of RA. Y;know. Stuff that’s important for people who live with RA.
But I digress.
What’s really interesting to me (perhaps less whether people) is that this menopause appears to have had a beneficial effect on my disease. Sure, it’s early days yet, what with being just a little over two months into it, but some intriguing things have been happening.
Take the side effects from the biologic medication I take for my RA. I’ve been a side effect magnet for the past 10 years, having a plethora of strange side effects. So many, in fact, that the second part ofYour Life with RA dedicated to managing side effects has a personal story for each chapter. Some of these side effects had gotten worse in the last six months of 2015, and brought new friends to boot. Around the early part of December, many of them went away.
Take another one, just for fun. Last summer, I noticed I was starting to react differently to my biologic. It didn’t seem to work quite as well as it had in the past. I spent some time in denial — ain’t just a river in Egypt, y’know — but then started thinking about it. At my last appointment with my rheumatologist, I even raised the topic of perhaps adding methotrexate to my treatment regimen, and she suggested changing the biologic entirely. And then I went home and stuck my head in the sand for some time.
In early December, just when I decided to do something about it the next time I saw my doctor, things changed. All of a sudden, I reacted much better to the biologic. Then I didn’t take it for a month because of that accursed cold I had, and instead of feeling the lack of the drug, I was fine for a really long time. I’ve had a couple of shots now where instead of being completely wiped afterwards — as I have in the last 10 years — I feel energized.
And it’s not just my biologic. How I react to my blood pressure medication has changed, as well. I went for a long time without it, something I haven’t been able to do for about a decade, and am now back on a quarter of the dose that I used to take. And my blood pressure is 110/70.
My GP tells me that landscape has changed completely, and it is quite normal for menopause to affect how you respond to medication. Basically, it seems like everything I used to know, I’ll now have to relearn while my body figures out what this new state of being means.
There is one caveat to applying my experience to someone else who lives with RA. I actually have juvenile arthritis. My type is very similar to RA, more or less a poster child for why it used to be called juvenile rheumatoid arthritis, which is why I often consider myself to have RA.
This might also play a role in what’s been going on. My JA went from being present and annoying in two joints to going supersonic when I hit puberty. So based on this very early evidence, could it be that just as the ignition of those hormones when I was 12 caused the disease to burn out of control, the cessation of some of those hormones may have the opposite effect at menopause?
Time will tell.
Bottom line is that I am no longer maiden or mother, I have entered the crone stage. The one where I become a dried-up husk and the relevant to much of our culture. No wonder I’ve gotten really obsessed with owls in the last couple of years.
I have no intention of becoming husky or irrelevant, though. This feels very much like a new beginning, one in which I am free of so much that’s been dragging me down. I can’t wait to start this new adventure.
If I am to be a crone, I’m going to be a very happy one!
Tuesday, February 09, 2016
Explaining the difference between rheumatoid arthritis (RA) pain and fibromyalgia pain isn’t easy. Articulating what pain feels like is extremely difficult to begin with, adding an attempt to differentiate different kinds of pain is even more of a challenge.
I have both RA and Fibro, the latter adding on to the party in 2004. Fibro is what taught me to refer to pain as being ‘loud.’ RA pain is deep and interior, and can leave you curled up in a fetal position, not wanting to move ever again. Fibromyalgia pain can be white static that makes it impossible to focus, and can feel like somebody is blaring a fire alarm in your ear for hours.
But still, does that tell you anything about the pain itself?
I have recently had occasion to do some in-person research. I can tell you that both can involve throbbing, but that’s where the similarities end.
A bit of back story
As have been evident from my repeated whining of late, I’ve had quite a humdinger of a cold for about a month. Because of this, I didn’t take my biologic for about the same amount of time. And really surprisingly, I wasn’t feeling it. In the past, I might’ve been able to skip one cycle, but then I start feeling a change. Nothing big, but pain and that soggy feeling so unique to RA would start to encroach around the edges.
This time, nothing. I was fine. There was even a moment when I considered if I might have become one of those people that we hear about in the myths who can stop their biologic and remain fine.
Yeah, that was too much to ask for.
RA makes a visit
I saw my doctor on a Monday, and was still too sniffly and cough-y for either of us to be comfortable with adding an immunosuppressant to the mix. And I was fine, so really, there was nothing to worry about.
I should stop saying these things out loud.
The next day something interesting happened. After stepping away from the computer to have lunch, a tendon in my right forearm was in a lot of pain. And not Fibro pain. This was different. This was Serious, intense, and deep. I was a little alarmed. It felt familiar. It felt RA-ish.
But then it went away, so I stopped worrying.
Until that evening, when the snow started coming in. I respond poorly to barometric changes, it always brings pain of one kind or another, and quite substantially so.
When I went to bed, I couldn’t sleep because of the throbbing in my feet. My toes were especially affected, and I paid a bit of attention to them.
The pain was in the bones, the joints, and especially the base joints in the toes on each foot, I could feel all ten of them throbbing with the rhythm of my heart. Each throb filled the space in the joints, pushing up against the boundaries, trying to expand. It had that deep feeling again, echoes of sound waves at the floor of the ocean.
RA. Without a doubt. Instant panic.
I woke up feeling fine the next morning, but nonetheless made an appointment to get my shot as soon as possible. I’d call that throbbing a shot across the bow. No need to wait for the full onslaught.
The fibro side of things
Thankfully, the shot worked beautifully. The RA withdrew, scuttling back into its cave with a final glare across its shoulders, and a low snarl.
And then the weather changed, as it tends to do at this time of the year. And I found myself in a similar situation, lying in bed in the dark, sleep held at bay by pain.
My feet were throbbing again, especially the forefoot and the toes. I closed my eyes and paid attention, thinking I might as well make productive use of the time and try to compare this pain to the other.
It took a while. This pain was hard to parse, encompassing all of the foot. I tried to listen to the bones and the joints, but it was hard to penetrate this buzzing throb. A throb, by the way, that didn’t have that direct line to the beat of my heart that the RA throb does.
And then, somehow, it came to me. The throbbing was happening in my skin and soft tissue between the metatarsals. I could feel that v-shape of the tissue between each bone in the foot, as well as the skin surrounding it. I could feel it because it was throbbing and buzzing and stinging and so very present.
But I couldn’t hear the bones. They were a negative space between and surrounded by tissue and skin, a non-feeling, a quiet that didn’t engage with the pain.
That may not tell you much about the pain, as such. It is more a story of its origin, and the origin's influence on the quality of the pain.
How would you describe RA and Fibro pain?