I had my second appointment with my new physical therapist (LB) yesterday. The first time I went to see her, she asked about my medical records. When I started telling her about all the tests I’ve had over the years, and all the different specialists I’ve been to see, and the mountains of paperwork now acquired, she agreed that it was easier that I just tell her. And as I have a gazillion test results and know quite well what they have (and haven’t found), she could start on the physical examination yesterday.

Good news: I’m still really flexible (she was quite impressed). She even laughed when I made my default joke – that I would be more flexible if all the stupid fat wasn’t in the way – and she agrees that the f*ckwit endocrinologist I went to who claimed that gaining 40 kg in 5 years is normal was an *sshole. She’s also rather impressed that my muscles are as pliable as they are and agrees that if they hadn’t been, I would probably have been in a lot more pain.

Ever since my backpain started, I’ve tested quite a lot of treatments. I’ve had physical therapy (of various sorts), I’ve done belly-dancing, yoga, pilates, hot water exercise, walked for miles in the forest, worked out in the gym. I’ve tried easy workouts and brutal ones. I’ve tried ignoring the pain and working through it. I’ve tested all sorts of drugs – anti-inflammatory (ketaprofen, celecoxib, diclofenac with sodium and potassium, naproxen), analgetics (paracetamol, phenazone, ibruprofen) and opiates (codeine).

I’m open for treatment suggestions if anyone knows of anything I haven’t yet tried.

I had a great neurologist who (after a dozen various tests) ended up with “unspecified myalgia” as official diagnosis, “There seems to be a chronic inflammation in your lumbar region but I have no idea what causes it nor how to treat it” as the unofficial. There were a lot of test results but none of them gave a clear diagnosis. My mitochondria have stopped working properly, I have fatty deposits where there aren’t supposed to be any, and I have muscular dystrophy.

Six years on, I’ve still not found any treatment that alleviates my back pain. I can go for a walk in the forest but that’s it. If I do anything during this walk (ie pick mushrooms or berries, get on my knees to take macro shots of interesting plants or insects) it triggers the inflammation. If I take any drugs, best case there’s no effect, worst case my pain flares up.

There have been a number of signs that my body is worn out from heavy physical work over many years. Torn rotator cuff, chronic latent shin splints, jumper’s knee and tendonitis in both arms, and this sudden switch from fully functioning muscles to mitochondrial disorders and dystrophy. The additional inflammations and uncharacteristic pain when I had the double neck prolapse last year. And yes, the bod stopped functioning overnight, when one day of visiting a number of galleries and exhibitions in London left me in so much pain I was unable to walk after sitting down.

Back to LB. After examining me thoroughly, she gave me the news no-one really wants. The most probable cause of my back pain is that my lumbar column is worn out. The good(-ish) news is that I now have a couple of pretty clear diagnoses to hunt – facet syndrome/facet joint problems, lumbar spine osteoarthritis, sacroiliac joint dysfunction, lumbar spinal stenosis – the bad news is that regardless of diagnosis, my back is f*cked. There are no good treatment options. Between skeletal and muscular issues, I will never have a functioning body again.

I also explained that my neck/shoulder/headache issues aren’t something she needs worry about. I explained how the main problem is that my neck stiffens if I don’t get a good night’s sleep, which causes pain travelling down into my shoulders and up into my head. She seems to agree with this and we decided that unless I get another prolapse we won’t bother too much. I already have the tools and know what to (not) do.

Our goal has therefore become finding tools for me to prevent triggering lower back pain flares and/or manage to deal with them (at the moment, my only option when they flare up is to lie down). I’ll have to make an appointment with my GP so we can start applying for full disability.