So, what exactly do I have? According to my GP, it’s CFS/ME, or Chronic Fatigue Syndrome. We share symptoms with sufferers of Fibromyalgia but my understanding is that they suffer with chronic pain more than those with CFS/ME. My GP said he will refer me to a specialist so this may change but from what I have read and conversations I have had with Fibro sufferers, I feel confident it is CFS.
- Persistent headaches, sore throat and ear ache;
- Memory loss and lack of concentration: an inability to think of 2 things simultaneously (this feels very strange as with my job, I need to think of 5 things simultaneously whilst also doing 3 things or more!);
- Achy muscles and stiffness, particularly neck, shoulders and hips. The pain is worse in my lower back. I regularly feel the need to stretch;
- Constant fatigue (obviously!);
- Feeling low (mood) when I am very tired or stressed;
- Increased sensitivity to the cold (I’ve always been cold but it is worse now), light, noise and crowds;
- Occasional tenderness in muscles;
- Feeling stressed more easily and quickly;
- Disrupted sleep: waking up in the night and not always being able to get back to sleep, or if my bedtime routine is disturbed I struggle to fall asleep.
All the above is made worse through physical or mental activity and lack of sleep. This is common amongst fellow sufferers but their own symptoms will differ, as will their triggers and the length of their flares. Personally, spending too long talking with a friend, even at home, will trigger some of the above to intensify, such as earache and headache. Alternatively a stressful situation will cause a flare, the intensity and length of which will depend on how stressed I became and how much I rested after this situation occurred and then how much I rest during the flare. It can take 24-48 hours for a flare to begin after the initial trigger. A flare for me entails a worsening of all of the above, in particular the aches and pains. It took 5 days for me to recover from the end of term last half term. When my symptoms worsen, I know I’ve really overdone it!
What helps me?
- Pacing: keeping a log of what you do and how you feel is allowing me to understand how my body and mind cope and react to different activities. My job is the most physically, mentally and emotionally demanding so I need to be aware of this when planning what other activities I complete outside of work.
- Exercise: I am going to start working with a personal trainer (who incidentally has fibromyalgia) to improve my flexibility and strength through yoga, strength training and nutrition.
- Mental health: Using CBT strategies to maintain a positive mindset and twice-daily meditation to re-energise me.
- Aromatherapy: I have discovered that this really helps to relax me mentally and physically.
- Daily stretching: relieves the aches, pains and stiffness slightly.
- Finding ‘me’ time: I have had to do A LOT of this but doing the above gives me purposeful ‘me’ time. I can’t believe I never did it before now. It’s really effective in giving you a much needed boost.
- Going for a walk/the gym: a 10 minute walk in the rain helps lift my spirit and gives me a sense of accomplishment.
- A bedtime routine: I have found this invaluable for helping me fall asleep and feeling a little more alive the next morning (if I have slept well). Sometimes this involves a bath if I am feeling overtired and very achy.
Regardless of whether you have CFS/ME/Fibromyalgia, I think everybody should spend some time reflecting on how you live your life and make some changes to improve your own mental and physical well-being. It’s for the good of your own health after all. In all the books and articles I have read, although the medical profession are still unsure exactly how you develop a chronic illness such as this, they agree that it is common after a viral infection, a bereavement or a period of high stress.
In today’s society with everybody on the go 24/7, we need to start to make time for ourselves. Make a change today and try one of the above to give yourself some ‘me’ time, even if it is for 5 minutes each day.
I’d love to know how you get on!
** The above is based on personal experience and by no means medical advice.