No one really knows what causes ME/CFS to develop (many people find that it follows a bacterial or viral infection, for others it can follow a physical or mental trauma, in other cases there is no obvious ‘trigger’), and the physiological cause for the symptoms are also up for debate. There is alot of talk about it being an issue with mitochondria, which is responsible for manufacturing energy within our cells. There is also alot of focus on the Autonomic Nervous System (ANS) which is responsible for many important functions in the body, including circulation, digestion and breathing. Some studies are showing that many people with ME/CFS have dysfunctions in their ANS which can cause symptoms such as orthostatic intolerance (which, as previously mentioned, is one of my main symptoms).
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed.”
Not knowing what causes the illness, or why the symptoms exist, is one of the reasons for approaching treatment with so many different options – in my case I think it’s a case of ‘surely one of these things will help!’. Beyond that hope though, there are very specific things that the musculoskeletal approach can help, including chronic pain issues.
I’ve had back problems for decades and the pregnancy and birth of my second (giant) child added on pelvic pain so I’d already spent years before I got ill trying out different physical therapies such as chiropractic, osteopathy and physiotherapy. For me, the best way to keep the pain away was to keep as fit as possible, incorporating plenty of pilates and yoga but when flare ups happened, chiropractic ended up being my treatment of choice as it was the one which seemed to get it to die back down again.
When I first got sick I was too ill to consider any physical treatments – I couldn’t get myself to appointments for one thing (at times my husband Garry actually had to feed me as I didn’t have the strength) and it didn’t seem relevant to what I was going through. As things dragged on, though, and I was able to do a little more, I started thinking about physical treatments I could try, to see if they helped.
Acupuncture is something I’ve always been aware of but never really tried, so I decided to give that a go, see if it had any impact. I found a local practitioner who came highly recommended and started seeing him every few weeks for massage, cupping and acupuncture to work on my pain and fatigue symptoms.
There was no magic switch that suddenly got flicked but as the months passed and I kept up with my appointments, the amount I was able to do slowly improved. Of course, this also coincided with all the other things I was trying so it’s impossible to say if it was any specific thing helping but if nothing else it got me out the house once a month for something other than work…
Since then, I have also restarted chiropractic and occasionally visit an osteopath to keep on top of my back and pelvic pain. My main aim was to at least get to a point where I could stop taking vast amounts of painkillers, which I had mostly managed to do – until the migraines started. I’ll write about the migraines in another post but so far, none of treatments I have tried have had any impact on these so I am still searching for a way to treat them but in the mean time I have mostly reached the point where my back, pelvic and other ‘random’ pain I associate with ME/CFS can be managed by regular massages and adjustments, plus trying to keep at least slightly active with gentle yoga.
My next goal is to try and really understand the psychological element of chronic pain. By that, I don’t mean ‘it’s all in my head’ but I am interested in the research being done on the brain’s response to pain and why pain still exists years after an injury has healed, or where there is no physiological reason for the pain. There are a few programmes out there claiming to help manage pain in this way but I don’t want to commit to something that costs £100s so I am going to try the Curable app, give it a few solid months and see if it makes any difference to any of the pain I experience. Mostly, I am hoping to at least get some control over the migraines so fingers crossed…