Well, today was my appointment with the private pain specialist. I was pleasantly surprised. Kind of.
He got off to a slightly shaky start, making what I can only interpret as a quite sexist remark within the first two minutes. Things mostly went up hill from there though. He is nice, well, reasonably personable which is enough for me if he can help. Not horrible, let’s call him that.
Now this one is for you Veronica, when we mentioned that we were waiting for a geneticist appointment and explained why, this is what he had to say: “Well, EDS doesn’t cause pain, so the only point of getting a diagnosis would be for classification purposes” (ie to make sure that it’s not vascular). When I most emphatically disagreed with him, his response was, “Well, EDS itself does not cause pain, it’s the joint problems you get that cause pain.”. I’m not sure how he makes the distinction between the two. Obviously he feels that constant dislocations and subluxations are painless. Moron.
Anyway, even though there were those negative moments, he really, really seemed to get my situation. He actually asked me relevant things. His physical examination of me was thorough. The most thorough that I’ve ever been subjected to, actually, OUCH. Interestingly enough, throughout his examination of me, as my body did it’s pop, pop, clunk, he joined in saying “pop, pop, pop”, so he obviously noticed that there is a significant hypermobility issue. Which I feel is a plus.
He examined my abdomen, which I initially thought was odd but it turns out I have a massive, hard something or other muscle in my abdomen. He commented that it’s unusual for that muscle to be so hard/spasmy or so prominent. When I asked him what that meant he said that it indicates sacro-iliac instability. Which I’ve been told that, despite my pain in that area, I totally don’t have. I told him I might kiss him.
He did say that when he felt around that area, it didn’t seem that unstable to him but he also said that it still might be quite unstable. Either way, despite being unable to pinpoint what’s exactly wrong, he said there is definitely a back injury there somewhere. He said parts of my spine are very sore to touch (‘cos I didn’t know THAT!) and we need to do a full spine MRI to find out exactly what’s wrong there. Huzzah!* He did also comment that he thought I was less hypermobile in my lower limbs than my upper limbs, which he said wasn’t unusual. I only realised afterwards that I didn’t show him my pop my hip out trick!
He said that the diagnosis of fibromyalgia is crap. He thinks I have some neuropathic pain but I don’t actually fit the fibromyalgia criteria properly, actually, he said I don’t fit any diagnosis neatly. He hopes that the MRI will rule out a few things, scary things like MS, which despite my scoffing is still a possibility, apparently. He rattled off a few more things that he thinks it might be, some more scary than others, so we’ll just have to see.
He believes that I do have an inflammatory arthritis along with other things that are creating this strange and complex picture. To me he seemed like he had more knowledge than all the PMU doctors combined.
He just understood that opiates work really oddly for me, in fact he barely batted an eye at it. He’s sending a list of meds to my GP so that I can start trialing different things. First on the list is a tranquilizer so that I can sleep. That is a definite huzzah! The most I’ve received from other doctors, in relation to sleep problems, is a pat on the hand.
Finally a doctor who is not a complete tool. That could have been my entire blog, really.
*Not huzzah for the MRI, I fucking hate MRI’s, but because he KNOWS there is something wrong. He wants to help, not just decide I’m a drug-addict/seriously mentally ill and take away pain relief then send me to a psychiatrist like the PMU.