Today is International Awareness Day for fibromyalgia and ME/CFS; poorly understood illnesses that can have a massive impact on the lives of those they affect. They are complicated illnesses that cause an array of symptoms, affecting every aspect of a sufferer’s life. Yet not everyone understands the full impact that these chronic illnesses can have. And that’s the very reason why May 12th– International Fibromyalgia and ME/CFS Awareness Day– is so important.
When you fall ill it is a natural response to expect doctors to understand what is wrong with you, with the hope that they will offer a solution that will help you. However, for the most part, this doesn’t happen in the case of ME/CFS and fibromyalgia.
Firstly it can be a battle to find a doctor who even recognises and understands these illnesses. Many patients see multiple doctors before finding a compassionate doctor who is willing to help them. Along the way, patients are all too commonly made to feel like a hypochondriac or that it is “all in their heads.”
Diagnosis should not be a battle. Saying “I don’t know what’s wrong with you” and leaving patients to it, is not good enough. If a doctor doesn’t know what is wrong with you they should be willing to find someone who potentially will and refer you onto them.
There are some lucky people who are diagnosed within weeks or a few months but for the majority it’s a frustrating process that can take years. I know I hated going to the doctor and only went because my family kept telling me I simply had to go (they of course were naturally worried about me). To reach a diagnosis of ME/CFS and/or fibromyalgia, it often takes a lot of determination, patience and resilience. Being told that you are completely healthy and that there is nothing wrong with you when you are in agony, exhausted and have a multitude of worrying symptoms is the most frustrating experience.
And it doesn’t necessarily get better when a diagnosis is finally made either. Though the initial response is typically relief because you finally know what is wrong with you, it is soon followed by the feeling of being completely lost and overwhelmed.
Following diagnosis many patients are left with limited ongoing support. When I was diagnosed with fibromyalgia I was handed a leaflet, I was told what it was and then I was given a prescription for amitriptyline. I didn’t have any further appointments with the rheumatologist to see how I progressed. Instead I was dismissed back into the care of my GP. What I have since learned is that if a prescription doesn’t help you, then there’s not much else your GP can do.
I personally don’t believe a prescription alone is the answer to managing these illnesses. It’s too simplistic as it does nothing but mask symptoms, if they work at all. Plus, drugs themselves bring a whole host of other problems with the side effects they cause.
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For the most part we have to muddle along, trying to find our own path towards better health. This involves trying countless supplements, remedies, diets and alternative therapies. You name it and we’ve likely tried it. All we want more than anything is relief from symptoms and the ability to live a relatively “normal” life.
My life has changed massively since I was diagnosed. I have been forced to make decisions and face a reality no 20-something should ever have to consider. Going from being able to walk for miles each day to struggling to even get out of bed and then fighting to get my fitness back has been more difficult than I can put into words. Almost two years on and I still have a way to go.
I count myself lucky, however, as– though it is a slow process that is taking years– I am finding my way back up from rock bottom. I am regaining my health piece by piece and have found strategies that seem to be helping me, with thanks needing to go to a wonderful company called Vital Plan; they kick-started my recovery and their products continue to help me.
This has not come easy and everyday I patiently persist in making choices that I hope will one day pay off. I live in the hope that they will because that’s what keeps me going.
Others are not so lucky however. Not everyone can afford treatments that may help them. Not everyone knows all the options available to them. Everything I do for myself falls out with the remit of the NHS and is self-funded. I fully appreciate that I am in a privileged position in that I have a family who are able to help and support me. They would honestly go without to see me get better and for that I am more grateful than words can express. I know that without this help I would no doubt still be very poorly.
I’m far from being a medical expert but I personally view fibromyalgia and ME/CFS like a puzzle. They are incredibly complicated illnesses and I don’t think there is just one cause but rather that they are a result of many levels of dysfunction within the body. To get anywhere with treating them, it requires a multi-faceted approach. The NHS is a wonderful institution but it needs to change its approach and treat patients with ME/CFS and fibromyalgia better; with more understanding and a with a more holistic approach.
Unfortunately, there are still cases where medical professionals haven’t even reached the understanding part, let alone be willing to take a more holistic approach. Too many have the approach that if a patient changes their outlook and exercises more then they will begin to feel better. In the case of ME/CFS this has not been helped by the flawed PACE trial that the media ran riot with.
This approach shows a fundamental lack of understanding. In the early stages of illness (which isn’t necessarily to do with the duration of sickness but more the severity), rest is the most important thing a patient can do for themselves. When you are so ill that you are bed bound, movement is counter productive at best and dangerous at worst.
I wish someone had told me this when I crashed in 2014. I believe it would have prevented the two subsequent crashes that followed and would have stopped my health from deteriorating as much as it did. My own personal experience is that pushing on and forcing yourself to exercise (I’m talking short walks here, not the gym or anything) just doesn’t work. All it does it keep you sicker for longer.
I made progress from supporting my body with herbal therapies, nourishing it with the right foods and giving it the rest it needed. I took things day-by-day and allowed my body the time it needed to start healing. Once my symptoms began to subside and I felt more well at rest, then– and only then– did I benefit from movement. Restorative movement such as qigong and gentle yoga helped, starting with literally a minute and slowly building from there.
I believe that telling patients they simply need to exercise is like expecting someone to be able to run before they can even walk. Focus should be on helping a patient to become more functional, slowly and sustainably. Telling someone they need to go out for a walk or try swimming when they are struggling to even wash or dress themselves is ridiculous.
Fibromyalgia and ME/CFS need to be viewed more seriously in the medical profession. We need more awareness of how devastating and disabling they can be. We need research to enable doctors to recognise and diagnose more efficiently. We need doctors to listen better and learn from their patients. We need ongoing support to help us get our lives back. We need better treatments. This is why May 12th is so important. Without awareness, none of the above will happen.
I encourage you to share your own story in the comments below and why you feel May 12th is important to you.