I promised another blog post to explain a little more about my diagnosis with Chronic Fatigue Syndrome and here it is... I thought I would start with the basics and then if you have any questions hopefully I can explain those answers in another post.
I was diagnosed with CFS in early 2015, when what my doctors described as "post-operative fatigue", following my jaw surgery in late 2014, didn't seem to be getting any better. Diagnosis is a lengthy process of consultations, blood tests and essentially ruling out every other possible illness with the same symptoms. Luckily, my doctors were very supportive and have been so helpful ever since, helping me to manage my CFS as best as possible.
CFS is also known as Myalgic Encephalomyelitis but I tend to use the term CFS as I think it tends to describe my condition a lot more clearly to people who may not have heard of the illness. As you might have guessed, one of the major symptoms is fatigue, but not just tiredness in the same way that you might feel after a heavy gym session or a long day at work; it is debilitating fatigue that won't go away. Some days I can sleep for 14 hours straight and still wake up feeling tired and groggy, whereas other days I will be completely exhausted but unable to fall asleep for days at a time. If I have been particularly deprived of sleep then I find it almost impossible to stay awake during the day too, which is very annoying as it then continues to disrupt my sleeping pattern as I get completely out of sync. This symptom alone has a massive effect on my day-to-day life, as I'm sure you can imagine, but I suffer from several other symptoms too.
Another common symptom of CFS, which is linked very closely to conditions such as fibromyalgia, is muscular pain and joint pain. I'm now accustomed to what I call my "baseline pain", which is the dull aches and pains I feel every single day; for me, my baseline consists of moderate aching in my arm muscles, mild aching in my leg muscles and stiffness and pain in my hips and knees. However, if I have pushed myself too far by over-exerting myself then I find that for at least a day or two afterwards these aches and pains will be much more severe, forcing me to rest up in bed until I feel better.
Memory and concentration are also affected in those who suffer with CFS and is commonly referred to as "brain fog". This sums up the difficulty sufferers sometimes have in organising their thoughts, finding the right words and focusing on the task they are doing. Luckily, I tend not to suffer too badly with "brain fog", but I definitely notice an increase in this symptom if I have been trying to do too much or have been under a lot of stress. I find that I tend to get headaches at the same time as "brain fog" and at these times I will do everything I can to avoid driving for my own peace of mind.
Some of the other symptoms I personally suffer from due to CFS are bouts of nausea (with no obvious cause or reason), sore throats, sensitivity to light and noise, anxiety, irritability and, as I mentioned earlier, insomnia and unrefreshing sleep.
My sleeping pattern is really variable and this can be really disruptive for me. Recently I have been struggling with this a lot more but (touch wood!) it seems to have settled down over the last few days.
Although the diagnosis of CFS can seem massively negative and limiting, I am still thankful that it is a condition I am able to manage myself (to some extent) and I always like to remind myself that it could be a hell of a lot worse. One of the things I find personally most helpful is staying positive. There are, of course, days when my condition really does get me down and it can be so frustrating not being able to do what I used to be able to do or what I want to do but on the whole I've been successful in keeping my chin up and staying optimistic!
In terms of managing my condition, a lot of treatment has been a process of trial and error, as the medical community still doesn't fully understand the causes of CFS, which therefore makes it incredibly difficult to diagnose and treat, but here are some of the things I have found to work for me personally:
- To manage insomnia, I occasionally take amitryptaline (sleeping tablets) or over-the-counter alternatives, although I do try to limit my usage of these to avoid becoming dependent on them. I try instead to employ different techniques to manage my sleeping pattern, such as avoiding technology after a certain time, sticking to a routine, reading in bed and listening to podcasts if I can't get to sleep.
- To treat muscle and joint pain I try to stick to low-dose painkillers (eg: paracetamol) and anti-inflammatories (eg: ibuprofen) and use these in conjunction with heat, such as hot water bottles or relaxing baths. On the occasions when my pain is stronger than normal I will take stronger painkillers, such as cocodamol, although again I try to limit my usage of these.
- A preventative strategy recommended by my doctor was "pacing", in which I avoid to much strenuous exercise or activities that I know will exacerbate my condition. At first, this was something I had huge trouble adapting to as I really found it difficult to say no to things but I like to think that I am getting better at pacing myself now.
- Although graded exercise therapy is thought to help sufferers of CFS I have unfortunately been unable to try this until now as I have hypermobility and my rheumatology consultant advised me to avoid exercise until I have been referred to a physiotherapist for supervision. I should be able to start this treatment soon though and I am looking forward to testing it out.
If you made it this far then I applaud you and I'm sorry for all the medical lingo I used! Hopefully this has shed a little light on CFS for those of you who may not necessarily have heard of it before, or if you are a fellow sufferer then maybe you picked up some tips to try or just felt a little less alone! If you have any questions at all then please leave them in the comments below and I'll get back to you as soon as I can.
See you next time ❤