My Fibromyalgia and ME CFS diary
What is Fibromyalgia & CFS/ME?
Chronic Fatigue Syndrome (CFS) is long-term tiredness (fatigue) that does not go away with sleep, or rest, and affects everyday life.
CFS is also known as ME (myalgic encephalomyelitis). Myalgia is muscle pain, and encephalomyelitis is inflammation of the brain and spinal cord. ME is a commonly used term, although it can be thought to be too specific to cover all the symptoms.
CFS is the term that is often used to describe long-term tiredness by GPs and medical professionals. This is because in the majority of cases, the main symptom is chronic fatigue. This is usually the preferred term, rather than ME, as in CFS, there is little evidence that inflammation of the brain and spinal cord occurs.
ME is often the preferred term of people who have CFS. This is due to the fact that they feel fatigue is too general and does not reflect the severity, and different types of fatigue. Also, it is felt that even though fatigue may occur in most cases, it is not the main, or only, symptom people experience.
What’s the Difference?
Some doctors treat fibromyalgia (FMS) and chronic fatigue syndrome (CFS) separately, while others think they are actually the same thing – or at least, variations of the same condition. According to the Arthritis Foundation, research shows that 50 to 70 percent of people with one diagnosis also fit the criteria for the other.
FMS and CFS are known to have a host of symptoms in common. They include:
Irritable bowel syndrome symptoms
Association with Temporomandibular Joint Syndrome (TMJ)
Cognitive or memory impairment
My journey with Fibromyalgia /ME
I decided to share my experiences with fatigue and chronic pain and how I deal with the daily challenges these bring. Over the years I have tried several remedies, some even claiming to be a cure, only to be bitterly disappointed yet again. I have learnt to be wary of such claims, as my condition, including the chronic pain, are usually only managed. In my experience I have found it is possible to manage the fatigue and pain, to varying degrees depending on the day (fellow sufferers will understand what I mean!) and I will share what has helped me, and what hasn’t made much difference at all. Of course everyone is different, and what might help one person may not another, but I promise there are things out there to help!
You are what you eat
What do you eat to help fatigue and muscle pain? Will changing your diet actually help with this? Research hasn’t shown that there are specific foods that all fibromyalgia /ME patients should avoid or add to their diets. But it may still be worthwhile to take a closer look at how foods impact the way you feel.
Pay Attention to How Food Makes You Feel
People with fibromyalgia /ME have sensitivities to particular foods, but it varies from person to person. For example, they might be sensitive to MSG, certain preservatives, eggs, gluten, dairy, or other common allergens.
If anyone out there is like me, you might feel quite unwell after eating certain foods. A good way to start identifying the foods that may aggravate your symptoms, is keeping a daily food journal for a week or so. Write down each day what symptoms you have, like headaches, indigestion, or fatigue. This can help you identify which foods may trigger fatigue more etc. You could also try eliminating certain foods if you suffer from IBS (irritable bowel syndrome). Stop eating a food you may suspect triggers this, e.g. dairy, for 6-8 weeks and then add it back to your diet and see how you feel. This may make a huge difference to how you feel, reducing pain, helping fatigue.
If you think you might have food sensitivities or allergies, talk with your doctor, who may be able to refer you for food allergy testing, or consult a dietician.
If you want to lose weight, it is important not to go on a limited calorie or fad diet as doing this may make you feel worse. You need to get your condition under control first.
Tip: Certain painkillers may cause constipation. You may wish to research ‘beetroot juice’ which now comes in a handy carton. This helps with the constipation and has a wealth of other health benefits.
Experts believe that exercise is essential for keeping muscles strong and flexible, controlling weight, and helping you stay active in other areas of life. In fact, exercise and activity allow patients to have some control over fibromyalgia and the amount of pain they feel.
It used to be that doctors thought that exercise might worsen fibromyalgia symptoms or accelerate the disease. So doctors encouraged patients to seek rest, not activity. But recent scientific studies have shown that, for most patients, range of motion, strengthening, and aerobic conditioning exercises are safe and necessary.
Does Exercise Boost Endorphins in Those With Fibromyalgia?
Studies show that exercise helps restore the body’s neurochemical balance and triggers a positive emotional state. Not only does regular exercise slow down the heart-racing adrenaline associated with stress, but it also boosts levels of natural endorphins — pain-fighting molecules that may be responsible for the well-known “runner’s high.” Endorphins help to reduce anxiety, stress, and depression.
I find that if I wake up even stiffer and less mobile than usual, even just a series of small stretches helps immensely. I do these daily, and if I can I will do pilates and yoga – I really dread to think how my mobility would be if I didn’t do this.
Certain types of exercising are a no-no, so for example swimming as breast stroke may hurt the neck too much. However, if using goggles and if you are able to do different types of swimming then as this is a non-weight bearing exercise it may be something to consider.
Having been on ME and Fibromyalgia forums it appears people with these condition can sometimes be wary of exercise as they think it may hurt too much. My advice is listen to your body but please don’t be afraid to try something you like the look of and think that you may be able to manage on a good day, the more you do a certain exercise the more beneficial it will become.
Alternative therapies and relaxation time!
So, what kind of therapies have you tried to help your condition? Or are you scared of trying any because they may hurt? Personally, having tried many therapists and even being promised ‘I can cure you’ I have found that for me, deep tissue /sports massage helps me the most. I didn’t find any benefit from seeing a Chiropractor and only slight relief from seeing an Osteopath. If the thought of a massage fills you with dread because you are not sure you could stand the pain, it is best to start of with a therapeutic massage to see what level of pressure you can tolerate.
I find that if I wake up even stiffer and less mobile than usual, even just a series of small stretches helps immensely.
Using a hard ball (such as a doggy ball) can help with some of the painful areas you may have in your back. Just lean up against the wall with the ball in-between and massage that spot for about a minute.
A foam roller can help tightness in the body, for example the legs.
I find that a shiatsu mat (a bed of nails) helps to release my muscles, promote sleep and has a way of making me feel good after using it.
The above tools may be too painful for you to use, as everyone has different levels of pain. There may be other alternatives for you to try, if you would like to discuss any with me, please feel free to contact me.
Personally, I am not into self help books, however, I find that keeping a positive mind is key to getting through those tough days. I highly recommend the following, which I recommend to all of my clients. These change the way you think and help you to recognise and understand what you have been through, and may possibly change your way of thinking.
The Secret by Rhonda Byrne
Waking the Tiger – Healing Trauma by Peter A. Levine
Please contact me….
..if you require any further information or if you think I may be able to help you. There are many other things I have found that help me, too numerous to put on here, and of course we are all different and have different symptoms, including varying degrees of fatigue and pain levels. What helps one person may not be beneficial to another, but I am quite happy to discuss and help in any way if I can.