Chronic Fatigue Syndrome or CFS is and has been known by many names. Myalgic Encephalopathy (ME) and Post Viral Fatigue Syndrome (PVFS) are two of the other names that can be found under the same umbrella definition. People suffering with CFS will usually present with extreme and severe tiredness and fatigue. They have symptoms of un-refreshing sleep, bowel and bladder irritation, anxiety and the condition can also affect concentration levels. Symptoms vary depending on the severity of each person’s condition, but in all cases CFS has a significant affect on day-to-day activities and social interaction. It makes managing a normal day tricky and mobility can be reduced. It also means holding down jobs and attending school can become very difficult.
We are not currently certain of the causes of CFS as they appear multifactorial, and whilst sometimes a virus, operation or severe period of stress can trigger it, at other times it can have no easily identifiable cause. The prognosis is variable and some people recover fully but others will struggle with this condition throughout their life. However, we know that managing the symptoms and regaining as much normal function as possible in gradual and steady steps is important as there is no easy cure.
If you suffer from CFS, here is a list of the top five tips for improving your symptoms:
1) Improve your Sleep Hygiene
Sleep is often disrupted in some way for people with CFS. You may find it difficult to get off to sleep, you wake later in the night or that you wake not feeling fully rested. Often people with CFS nap in the day to try and ‘catch up’ on what is felt to be missed sleep, but this can have a detrimental effect on sleep quality at night as the body is out of a normal rhythm. Good sleep habits or “sleep hygiene” is as important as tooth hygiene or any other type of self-care; you have to be methodological and structured. This then builds good habits and therefore good hygiene. Build and structure your sleep both in terms of trying to avoid naps in the day, but also by planning and implementing a routine before you go to bed at night. This might include not watching TV for two hours prior to sleep, having a nice warm bath, practicing some breathing control exercises and then putting yourself to bed. This order and routine, once established and recognised persistently by the brain, will order your sleep better and enable your brain to recognise it is ‘time for sleep’. This takes time, so persist, keep these new routines going for over two months and you will see improvement in your sleep and in your energy levels throughout each day.
2) Identify your Baselines
Baselines are what we term the base level of ability that won’t trigger a worsening in your symptoms or a relapse. Your baseline walking tolerance, baseline sitting tolerance or your baseline tolerance for sewing or knitting will be different as they will demand different levels of energy from you. Knowing these levels ensures that you have control over your condition and know how and when to stop. This ensures you don’t overdo it again and again, which can eventually be very de-motivating and also detrimental to improvement. A physiotherapist can help you to identify and set your baselines using techniques to assess your current ability levels over a period of time, and then setting the amounts with you for different activities. It takes a bit of tweaking but is worthwhile putting the time investment into to get it right.
3) Build on Your Baselines
Once you have established your baselines and have been comfortably living within these limits for some time, it is time to challenge them. These baselines might only allow you to do a small amount of activities that you enjoy or wish to do more of. For example, establishing that your baseline for walking is 3 minutes is excellent for setting your levels and feeling in control, but this doesn’t allow you to do the weekly shop or get to the train station in order to get to work. We call this graded exercise or pacing, and it is a valuable tool in treating many chronic conditions such as CFS. It has been shown to improve the quality of life of CFS sufferers and can be implemented by anyone once baselines have been set. Starting with your baselines, and gradually as the weeks progress, you add a very small but regular amount of time or distance to that activity. For instance, if your baseline walking level is 3 minutes, you may choose to add 1 minute every two weeks until you reach your desired goal. This has to be performed regularly in order to see results, and getting rid of habits such as variability is vital in order to see results. This can take time and needs planning. You might feel this technique is frustrating initially as it does mean planning your day quite carefully but once results and improvements start to be seen, it is easier to stick with.
4) Speak to Other Sufferers
There is nothing like a good bit of support. Whether that’s from a medical professional, your physiotherapist or a fellow sufferer. Each can have tips and pieces on advice that might offer you some alternative way of approaching a problem you are having because of your condition. “Open listening”, or listening where we fully absorb what the other person is saying without judgement or interrupting them, is an art form, and practicing listening to advice being offered to you is an invaluable life skill even if you don’t suffer with CFS. When you do have this condition it can make concentrating more difficult, so practice focusing on conversations and not allowing your mind to wander. Practice finishing what you are reading to a definite point such as the end of a chapter, or the end of the article before you allow yourself to become side tracked by your thoughts. This concentration skill fine tunes the brain’s focus and can have a positive effect on chronic conditions such as CFS. The brain is a highly complex machine and we still do not fully understand the working of a normally functioning brain (whatever that may be!) let alone one suffering with CFS. What we do think is that concentration practice and focused learning can bring the attention away from the detrimental condition and back to normal activities, hopefully adding to improvement.
5) Try Alternative Therapies
There are numerous alternative therapies out there for CFS including osteopathy, energy treatment, acupuncture, homeopathy and herbal remedies. Everyone reacts differently to these types of treatments and none can claim to be cures. However, if you choose treatments based on sound research combined with recommendations by friends and family, they may help. It’s also worthwhile checking the National Institute for Clinical Excellence (NICE) guidelines for current recommendations. Don’t be persuaded to hand over lots of money up front for long treatments before. See if you feel any benefit after a few sessions and always try to combine these more passive treatments with active strategies as discussed above for best results.
Post by Leanne Plenge, Physiotherapist and Bristol Manager.