I've had very bad neck and back pain throughout my illness, and many different kinds of treatment, so I'll pass on what has been helpful for me.
Out of all the therapies, most were of some temporary help, but few if any provided lasting relief. A big breakthrough for me came with an 8-week course for chronic back pain sufferers, a local NHS service. This was a superb course, and I learnt a lot, particularly about the importance of using pain killers rather than suffering the pain, as this does actually help as a treatment for the back injuries and the associated inflammation and the therapeutic benefits greatly outweigh the risks associated with long-term painkiller use (especially if you understand the dosage limits and the reasons for them) - painkillers are also a treatment, they are not just for killing pain. But the biggest breakthrough of the course came on the last day when I had specialised physio attention. Multiple physio sessions had failed to help because the general exercises designed to strengthen my back muscles never got to the root of the problem. At last - after nearly a decade of treatment - I learned a simple exercise that worked for me: hard to described, but I pull back my head leaving my shoulders relaxed, keeping my head upright but effectively straightening my neck, and tucking my chin so that I get a 'double chin'. Can't really describe it better than that, but this strengthens the relevant muscles and also provides instant relief. With that dealt with, all the referred back pain is relieved. So my first conclusion from all that is that what one is really looking for is the precise, simple exercise that really gets to the root of the problem. And the second conclusion is that it really is true that physio and postural work really is the only way to deal with these problems long-term: all the other treatments manipulate your back into a 'better' position, but unless you train your muscles to keep it there, the problem will just keep coming back.
The next big issue for me was as simple as getting a good night's sleep. I think most of us are aware that we don't get proper good quality sleep, and this isn't just solved by sleep medication or any of the other sleep hygiene methods (though they can help a bit for some), there are other (various) underlying medical reasons why we don't
ever get into deep sleep. The first night I got a proper night's sleep, after many years, came when I first got a complete new (tempur) mattress and complete new set of bedding. I didn't last long in it (about a week) before I 'detoxed' onto it and 'infected' it and there was an £800 bed I can't sleep in any more because it makes me itch like crazy (which I think is fundamentally what stops me from getting deep sleep). Now I sleep on a semi-aniline leather (and hence flame-retardant-free) sofa. But anyway: the fundamental observation here is that the first time I got a good night's sleep, my back and neck pain vanished. And ever since then, it is very noticeable indeed that when I get a poor night's sleep, or a short night's sleep, my neck and back pain returns, and any other muscle aches and pains are also retained from the previous day. It's very clear indeed to me that deep sleep is essential to the body's healing processes. Without that deep sleep, chronic back pain is very hard or impossible to solve; with that deep sleep, even quite serious problems can be greatly relieved. (There can be a vicious circle to break here, of course, because any kind of pain can prevent deep sleep).
My final tip is posture. In some recent new advice this year (I think I actually saw this on the TV programme "QI" this year), the boffins have finally overturned the previous advice to "sit up straight" and the associated postural advice for sitting at computer workstations, which everyone from physios to occupational health to health and safety instructors had been dishing out since time immemorial. Now, at last, some boffins or other have figured out what I learned the hard way: What everybody was telling me when they told me to adopt that classic "sit up straight" "hard-working" right-angled posture is just about the worst thing you can do to your back. In fact it's now recognised that it's actually better to slouch with your bum well forward and your head back, just as I had always done before my onset, and just as I've been doing for the last 5 years or so against all advice from back specialists. I work from home, on the sofa, with my head back resting on the sofa and my back slouched and curved, just as one was told not to do (before this new research), and that's what enabled me to resume my career and now enables me to work all day every day like this without back and neck pain. I'm not necessarily saying that's universally good advice (though I suspect it is) but I would say that trusting your own instincts about what is a comfortable and sustainable position for you, even if others are telling you differently, can often make a very positive difference.
Final note: there is some suggestion that neck injuries (eg from whiplash) causing chronic neck pain can lie at the root of a lot of chronic illness and may be associated with a lot of "CFS". I think there are a few possible mechanisms here: effects of damage on the nervous system may potentially have all kinds of destabilising effects on all the body's systems, and affect nerve activity and hence other forms of pain, and also there are secondary mechanisms from the chronic pain such as inflammation and loss of sleep, as already mentioned. So if there's a bottom line to all my thoughts above, it would be: this is an issue well worth persevering with until you find effective relief, it can be connected to your other health problems, you need to find individual solutions, physio treatments and individual exercises affecting the underlying muscles are the ideal for long-term solutions, and getting good deep sleep is also crucial both as cause and effect.
Hope all of that's helpful to someone.
