The last few days I've been doing a lot of reading about auto-immune conditions and how ME/CFS could be categorised as one.
Basically one school of thought is that ME/CFS sufferers have an overactive immune system and that's the reason we feel so tired, because our bodies are on red alert, constantly thinking that there is an invader that needs to be killed off. To me it makes a lot of sense. This is an article from a few years ago and the issues surrounding improvement in symptoms during pregnancy (the immune system is suppressed during pregnancy) , the role of stress in developing ME, as well as triggering a relapse and how an overactive immune system can cause a myriad of symptoms like inflammation, IBS, intolerances and allergies. Exercise boosts the immune system so its no wonder that this can be bad for us...
I have a cold at the moment and so my ME is pretty bad. One funny symptom I get when I have the cold or a virus, is itchiness all over; a bit like a creepy crawly, restless feeling. Again probably a histamine response triggered by a wonky immune system. I wont get into too much jargon but the mast cells are connected to the histamine response and are thought to play quite a big role in ME/CFS as discussed here. Its also encouraging to see the results of the Rituximab trial and the further trials that are likely to take place.
In terms of what helps me, I find it very difficult to have time to rest (something that's extremely important with this illness) but with a preschooler and house to look after, part time job and friends to keep up with (that's vital for my sanity ha ha!) , its difficult to make 'me' time. What does help though is 'activity switching'. I ensure that I am only doing something for a certain period of time i.e.watching tv or going on the laptop, which I call a 'brain' activity. I will switch after a while and do something like washing the dishes or emptying the washing machine, which is a 'physical' activity. As I said before I'm lucky to only be mildly affected so not being able to rest regularly on a daily basis is not such a big loss to me now, although I'm fairly sure it would help! Most nights that I come home from work I'm no use for anything except my bed!
I'm determined that I will recover fully though. Next month it will be 11 years since I first became unwell and although its been a slog, I have made a massive improvement with my health. Back in November 2002 I was stuck in my bed for weeks on end struggling to walk through to the bathroom for the dizziness and couldn't focus on people outside the window due to the blurred vision and floaters in my eyes. The exhaustion was unbearable and I cried lots especially when the GP dismissed it as a virus and told me I needed to get back to work... The headaches, GI symptoms, palpitations and muscle twitches worried me enough at times that I wasn't sure I would make it through the night. Thinking back it's like some awful nightmare and was a massive strain on my very new relationship. But I got through it (and stayed with my boyfriend - now husband!). Reading the books on recovery from ME/CFS and the stories online were and still are a big inspiration.
Here are some ideas to help you. Good luck!