I had been looking forward to this for about 6 months. Finally, yesterday, I had my appointment with the Chronic Pain team. The physical therapist, psychologist, counselor and nurse all seem like caring and well informed people, so I've still got a lot of hope, but also a little disappointment.
For one thing, I had hoped that the members of the team would be familiar with and receptive to the Canadian and Australian descriptions of ME. Instead, I received another definition of the difference between Chronic Fatigue and Fibromyalgia. More than one doctor has stated to me authoritatively that they're pretty much the same thing, or that Chronic Fatigue can feature pains as well as exhaustion so it gets confused with Fibro. This pain management doc's take on it was that Chronic Fatigue does not involve any pain whatsoever and therefor, since I'm experiencing pain, it's Fibro. He tested the classic pressure points for Fibro and sure enough I felt pain in 11 out of the 18, which he said means it is Fibromyalgia. But what if I had felt pain in only 6 or 7? Then it would not be Fibromyalgia OR Chronic Fatigue. And what about the chest pain which is my most intense and recurring pain, but is not included in those pressure points?
I appreciate his stance that the name is not important: what's important is what it's doing to me. But he also said it's not important why it's doing it. We'll be treating the symptoms, it seems, with coping measures. That's very valuable in its way. But what if the research on ME is correct and there is indeed inflammation of the brain and hypotension causing all this pain? And what if Feverfew could indeed reduce that inflammation and perhaps increased salt would be advisable for the hypotension? I hope that the team will be open to discussing these things, but at the first visit it seemed not. They asked me if I understood what my diagnosis was and why I felt pain, and when I went to the physiological roots as I understand them, which do seem to me to explain my symptoms, I was cut off. Well, they had a lot to get through, and although we had three and a half hours to work with, there was no time to spare for in-depth discussion.
I do appreciate the focus on symptoms over disease names. The intention is a more holistic approach. The team is very much devoted to working with mind-body connections and supporting whole patients to relieve pain. But if there's an explanation why I can't climb stairs without pain and dizziness we could treat causes... if... but... if... Ah, it's all ifs and buts, so why not try their way, I reason. I'll give it a fair trial. This was only the first day. I have 11 weeks of group classes ahead.
They're starting me on the same med that didn't work for Hazel. I'm not Hazel, though. Maybe Nortriptyline will work for me. As in Hazel's case, it's being prescribed for sleep disturbances. First night on it, I'm having the worst insomnia I've had in weeks. I'll give it a fair trial, however, if only to show that I'm cooperative and open to pharmaceutical options. And I'm tired. I don't want to argue, I want to cooperate and receive support. But I'm also going to ask if herbs are an option for me.
It's not that I think all herbs are better than all pharmaceuticals. Ironically, the yucky feeling I'm having tonight reminds me of the herb Valerian, which doesn't help me sleep but just makes me feel woozy and dizzy.
We're all guinea pigs. As long as this condition is unexplained and incurable we sufferers are the lab animals testing the latest theories. They say Nortriptyline works for many sufferers of ME/CFS and Fibromyalgia. I'll keep you posted on my reactions to the drug.
I'd love to be going to the acupuncture clinic that helped me feel so well a little over a year ago. I'd love to be seen by a Chinese herbalist, or a really good homeopath. I'd love to explore any number of alternatives, but this pain management clinic is the alternative available to me at this time, free, and within reasonable travel distance. If the effort ends up being more exhausting than relieving, I can drop it. And I'd love for the Nortriptyline to work, after all.