So my neuro set me up to see this team of docs from the multidisciplinary clinic that is also where his office is at, to see if there was anything they could help with on the chronic pain front, which then might help on the chronic migraine front.
I had an assessment with three doctors today. One for chronic pain, one for fitness and the other for medication management.
The first fellow on the chronic pain side of things did the sort of assessment one rather excepts with FM, to be honest. The whole ‘I’ll just jab you in this excessively tender spot to see how much it hurts’. I am always amazed how much it actually Does hurt. Such mild pressure. However, it did hurt less than I remember, so maybe Lyrica is still doing something after all. But it was insanely painful in the knees, lower back and hips… the rest was better than I thought it would be, to be honest. Except when I do things of course, but for the purposes of the exam, nothing he felt would be helped with nerve blocks. Maybe botox again for the neck, but since it didn’t help before he didn’t think that was a likely way to go.
It is amusing during these exams how astonished doctors are to see someone with hypermobility syndrome. I always find that odd. There must be more than a few of us and more than a few with chronic pain from that, if not also later arthritis… so how astonishing can it be to see someone who is a little extra bendy? He was entertained by it though. At times, I have no idea what he was noticed to be honest because whatever it was was a normal range of motion for me.
I am double-jointed in more than a few places. But here is an example of where you can bend your thumb to your arm. I think this must be common. You can actually lay it down flat if you press on the knuckle which I admit does look odd but feels fine. Really I think the whole thumb area is flexible along with fingers. Less so some of my fingers though since I got nerve damage in them, they lost some of their actual mobility.
Another common example to be seen with hypermobility is the backward elbow bending (excuse the bathroom self-pic here. I would not normally do so but a hell of a time getting an angle on your own elbow. lol). I know that my elbows bend funny and it has shocked and alarmed people since I was a kid, but to be honest, when I look at other people’s arms I just don’t get it. I try to posture my arm like that but there is just absolutely no stability. It is like sideways to me and I would not be able to actually put any pressure on it like that. So instead I get this arched look and the more pressure you put the more it twists the wrong way.
So while that was entertaining not much use to me, to be honest. Except he did mention he thinks I should see a rheumatologist again. We discussed how I had been diagnosed with FM and how it had not been related to accident, trauma or injury. I assumed related to the hypermobility causing me pain as a kid. Anyway I told him as a kid due to that I had joint pain and then my doctor had tested my ANA bloodwork which had shown me to be high. That led to my first rheumatologist visit and diagnosis with hypermobility syndrome. Then years later when things got worse I saw another doctor who wanted to test my ANA for RA, and I told him, it would be high but that I had been told that wasn’t an issue. Again, it was high, as it had been the many times I took the test as a kid and again I went to a rheumatologist who diagnosed me with FM. So this fellow laughs and says he thinks my ANA should be tested Again and I maybe should see a rheumatologist. It likely would do no harm but I don’t see any real benefit. Both the ones I saw concluded the high ANA was just me being part of the population that naturally has a high ANA. But I won’t argue if they think I should go for a second (third) opinion because I have only ever that those two appointments. Never hurts to get these sorts of things checked.
The second doctor, the fitness expert, also did an assessment and discussed exercise routines. She said while it is true studies have indicated, and she said to keep in mind the criteria of studies, that three hours a week of aerobic exercise helps with chronic migraines. It is also true that none of those people had comorbid conditions in order to participate in those studies. In her opinion and experience, it does no good for someone with FM to exceed their limits, to the point of pain or worse a flare up… when they can stay within their limits and slowly increase them without. So that might not be a realistic goal. She suggested I get into a routine of walking. Starting by seeing where my fatigue limit is and staying in there, then slowly increasing it once that becomes comfortable. She also agrees with my yoga routine because it helps with strength and stability. Again though starting within limits and modified if needed. She recommended a modified yoga course in fact… but I might not be able to afford that.
The final fellow did a review of my current medications and some previous ones to look at pain management. I am on Lyrica, which is for the FM and that is all good. But he recommends a slow release tramadol pill to be taken once a day for overall pain management. We had discussed the differences I find between T3s and tramacet (which is tramadol and Tylenol) and that I had asked my doctor to switch me because T3’s, the codeine specifically causes an after headache rather quickly and so it is a rather crappy migraine rescue medication. I said I don’t have that issue with tramacet. I had been on the slow release tramadol before as a rescue and I had found it to be great in reducing pain… it lasted longer for one. So you don’t get that minimal pain relief and then a sharp drop where the pain comes back. And that it had also reduced my FM pain at the same time. My only concern was that he wanted me to take it every day. Usually, I reserve that for high pain days because I have always been told to never take anything, anything at all (NSAIDs, triptans or painkillers) often without it potentially making things worse (what worse is I have no idea at this point, but still.) And he said that since I tolerate the tramacet now, have tolerated the slow release before, without any rebound effects that it should not be a problem. He would like me to try it for a month straight to see. Well, if it is a problem it will take less than a month to find out I can tell you that. Sure figure it out quickly with T3’s, especially when I had injured my ribs and was prescribed it more than once a day… yeah, that didn’t happen. But I will give it a go because if it reduces the FM pain and actually the migraine pain as well then that will help me with the exercise intolerance I have. It is important I get on top of the exercise and pain is one thing that really gets in the way of establishing a routine. So I will see if that helps. If it doesn’t, well, not much I can do about that but use it in more extreme cases as needed instead.
So there is nothing spectacularly new about what they said. Keep in mind tramadol is under the Canadian Guidelines for the treatment of Fibromyalgia as being the best painkiller to use. And Lyrica is also recommended. The exercise of walking and yoga, and increasing the pace slowly within tolerable limits is always how I have exercised (how many times do you need to learn the wrong way right? Before you go… right, so pushing myself hurts like a bitch for days. Not working.) and both are commonly recommended for FM as well. I might also consider, once I get a little more into it water aerobics… like a senior class, or if they have one for people with disabilities… as it is also an FM recommended exercise and quite a bit cheaper than a yoga class would be.
Now I also have a pain clinic appointment in June to go to, which I kept because I thought, well, they might have different approaches. So I will also see what their plan of action is and maybe it is more hands on. Maybe not.