Day 13: So today I went to the Pain Clinic

Day 13 – Tuesday, Nov. 13
Book report. What’s your favorite book and how can you tie it to your health or life?
OR
Write about something taboo

I hadn't decided which topic to pick today, but then I went to my first assessment at the Pain Clinic and I can't really think about anything but that.

The Pain Clinic

 First of all, going to the Pain Clinic hurts! For someone who is not used to sitting up for longer than 20 minutes at a time, having to sit up for a 20 minute taxi ride, half an hour in the waiting room, 45 minutes for an appointment, then an hour getting home... well, it was Not Pleasant. My tailbone hurts so much, and I know I'm going to have a crash tomorrow and possibly for several days.

However, I got important information today that I needed, which is that I have Fibromyalgia in addition to M.E. The pain doctor was a wonderful woman with white hair that had purple streaks in it, so I will call her Dr Purple. She didn't talk down to me, took me seriously, and actually explained things chemically that were going on with my medications. She then had me stand up (with my husband spotting me in case I lost my balance) and did the tender point test for Fibromyalgia. 

Later, he asked me how it felt, because he could see that some of them were very obviously painful. The closest description I could give was "Kind of like that sort of blinding pain feeling you get when you stub your toe, and it just sort of sweeps pain through your whole body and you feel like your vision just kind of goes all white for a second. Only it wasn't a sharp sort of pain like that pain, and it didn't keep hurting once she released the pressure." That's not a very good description. Especially since now I'm feeling aching in those tender points now, a few hours later.

How does it feel having a new diagnosis? A little sad. A little relieved - I don't think doctors understand how much it means to patients to have an actual, reliable diagnosis, even if the diagnosis is for something unpleasant and incurable. But mostly no different. I talked to my former GP about Fibromyalgia a few years ago when pain became one of my regular symptoms, and his response was "You probably have it, but there's no point in making an official diagnosis, because there's nothing we can do for it anyway." So I'm not at all surprised by it (though I am surprised by the intensity in the tender point reaction). What does surprise me is that apparently there are medications that can treat Fibromyalgia, so my old GP was either full of shit or too lazy to keep up with changes in medical treatments. He has since retired, so possibly the latter. 

The medications I'm already on are closely related to the drugs most often prescribed for Fibro pain, but the dosages are all wrong. I'm going to start with slowly changing doses or possibly changing the medications themselves to their chemical cousins, but only one change at a time. There are also non-medical treatment possibilities, but the appointment was running over (we were in there for 45 minutes, which is extremely generous for an NHS appointment!) so she didn't really go into those, and besides, one change at a time.

Next step is that she will write everything up clearly, with the diagnosis and her recommendations, and mail a copy both to me and my regular GP. Then my GP will start adjusting my medication dosages. I'll continue to see the Pain Clinic for more adjustments and recommendations over time.

And so we'll see what happens.

#NHBPM