I make one of the worst patients ever. I may only have a BSc, but I have that BSc as a direct result of an interest in biochemistry. My second and third years were basically me trying to get a degree that would help me with forensics (I could see a potential beyond DNA- mostly it would have been for drug testing and pathology but I had that focus.)
So for me my RA was very easy to understand and accept. I studied it. I did my first immunology lab test on blood from RA patients here in New Zealand. It was more than real to me.
So Fibro has been tough. Bu I have been exhibiting ever more symptoms even if some of them have been with me since I was young.
But what has made that hard is not having that same clear understanding of the biological process.
Too often patients are told “you shouldn’t feel this” instead of “we just don’t know why you feel this.”
One states there is no cause, the other that we just haven’t caught up on the science.
But today I just bluntly searched for fibromyalgia tissue sample because that is the kind of study I can trust. At least for finding changes that we know to look for. Studies on perception or behaviour I don’t trust because the interpretation can be so heavily altered by bias.
And yes. FM patients have higher levels of cytokines in our tissue than controls. I honestly don’t know why it’s only been in the last decade that I can find these papers because I would think it would be where to start. You can find the links in the chain working back to the brain, rather than start in the brain which is so complex.
And immediately I thought, okay I get this. I can start to look at changes in therapy to match this.
Small fibre pathology in patients with fibromyalgia syndrome
Nurcan Üçeyler Daniel Zeller Ann-Kathrin Kahn Susanne Kewenig Sarah Kittel-Schneider Annina Schmid Jordi Casanova-Molla Karlheinz Reiners Claudia Sommer
Brain, Volume 136, Issue 6, 1 June 2013, Pages 1857–1867, https://doi.org/10.1093/brain/awt053
Published: 09 March 2013