My friends and family often ask me how I contract and what is Fibromyalgia, Myalgic Encephalopathy and Chronic Fatigue Syndrome. It’s like asking what’s the meaning of life! Is so complicated that I decided to write how it effected me instead.
I played life’s health lottery and lost! I was diagnosed with Fibromyalgia, Myalgic Encephalopathy and Chronic Fatigue Syndrome (FMS, CFS/ME) after a long period of going back and forth to the doctors. You didn’t know how sick I was, you called me a hypochondriac behind my back. I hope by reading this it will give you an understanding into my world.
My life has changed dramatically, I don’t really understand it myself, so I will try my best to explain to you how my body has changed and how some things that have never affected me before do now.
Below is just a very short view into part of my world.
FMS is not the latest craze in diseases. In fact, it isn’t a disease at all. It’s known as chronic rheumatism, myalgia and fibrosis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Other syndromes in this little group include rheumatoid arthritis and lupus.
The many physical and emotional problems associated with FMS are NOT psychological in origin. Trust me, this is not an “all in your head” disorder.
Fibromyalgia is a common condition characterized by severe long-term pain and tender points in joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems, headaches, numbness in hands and feet, depression the list goes on and on.
I think I can pin point when this could have started. Thinking back it must have been my 2 months stint in St Georges Hospital in 2013 when I had a perforated bowl. The consultants say that this kind of trauma can lead to Fibromyalgia.
My pain is not caused by inflammation. I work a fulltime job with my pain, I don’t know what each day will bring as I don’t know where my pain will be i.e. Today it is in my shoulder, but tomorrow it may be in my legs or even in my arms/hands. Sometimes I feel as if it`s my whole body. My pain is believed to be caused by improper signals sent to the brain. It is not well understood, but it is real.
My fatigue – I am sometimes not merely tired, I am in a state of exhaustion. I may want to go out and do normal things, like going to the cinema, or the pub or just going for a walk, but I can’t. Please do not take this personally, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember what I promised to do for you, even though you told me just seconds ago. We make a plan of action to get me through the day, remembering to think 10 steps ahead, but guess what, the fibrofog sometimes won’t let me do that.
My sensitivities – A number of things affect me but mostly odours and loud or high-pitched noises. FMS has been called the “aggravating everything disorder”. Loud bangs or unexpected noises make me jump, babies crying make me get up and leave a restaurant. Strong food smells make me want to be sick and then leave me with a headache. I really don’t stand it as these things have never bothered me before and it really frustrates me at times.
My intolerance – My internal thermostat is broken and can’t be fixed. I can’t stand heat or humidity. My hair is constantly wet because I sweat all the time, this is so embarrassing so please don’t point this out to me, trust me, I already know. Please don’t worry if I shake uncontrollably when it’s cold. I can’t tolerate the cold either, in fact it makes my pain worse when it’s cold. As I said, my internal thermostat is broken, it’s not my fault.
My depression – Yes, there are days when I would rather stay in bed or in the flat, pain can cause depression. Your concern and understanding is touching and is appreciated, yet snide remarks are not called for or welcomed. I will improve, I don’t know when, it might be something little that will bring me out of it. It’s not your fault and it’s not mine.
My sleepless nights – I don’t know how to switch my brain off, I have 100 and 1 things going around and around in my head, I worry about the slightest thing and lay in bed at night thinking about them.
Sleepy days – Some days I feel so tired, my body feels like lead, my whole body aches, I have no energy, even though I have been in bed all night, when I wake up I just want to go back to bed again, please understand it is not my choice, the choice has been taken away from me.
My stress – My body cannot handle stress. Stress makes my symptoms worse and can incapacitate me completely. I try to avoid stress but stress will not always leave me alone.
My weight – I may be overweight, but believe me, it is not by choice. My appetite is broken, and I’m struggling to cope with it, if only there was a magic pill. I don’t like my body like this and I can’t help the fact that I crave food all the time, I try my best but my best is not always good enough.
My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks. In fact, the good days are what keep me going. I try to do what I can as I never know when the next flare will return.
My medication – I have had to try several cocktails of many different medications to help me get through the day, so please bear with me if I seem out of sorts, the meds cause all types of symptoms, i.e. sickness, headaches, drowsy, heart palpitations. Some meds can take up to 4 weeks to kick in but it only takes a few days for the side effects to kick in.
Cravings – Please don’t think I am being greedy, it’s not my fault it’s the side effects of my meds. I try to resist but sometimes it gives me pleasure to eat that biscuit in the cupboard, I try to have more control over the cravings and to eat healthy snacks but you always see me with my hand in the cookie jar.
Clumsy – I know there are days when you think I am cumbersome, I don’t want to be like this but my legs feel like they have been set in concrete and my hands painfully cramp up. Not my choice.
Dinner- The pain in my hands and legs don’t always allow me to prepare your dinner, this might seem a small thing to you but it’s a big thing to me. I love looking after you and preparing dinner for you, but it’s the pain stopping me. If I stand up for too long my legs scream out in pain and I have to go and sit down, I feel so useless.
I hope this gives you a little understanding into my world and how I have to cope on a daily basis with constant pain.