So, today is international Fibromyalgia Awareness Day & as this is something I suffer with, I need to do my bit by spreading some awareness & helping to educate people…. this really is a life changing condition. You may notice posts on Facebook, Twitter & blogs & notice that the colour associated with Fibro is purple…one of my favourite colours 🙂
This lady wrote a very open & honest account of her experience, which is very common. It is in her own words, so if you notice any mistakes keep in mind that she wrote this whilst in pain…I hope this helps at least some of you to understand & I thank the lovely lady who shared this ….
If you were born with healthy genes, you may know me but you don’t understand me, I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn’t know how sick I was, you called me lazy.
I hope by reading this it will give you an understanding into our world.
My life has been turned upside down, 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/our world. FMS is not the newest fad disease. In fact, it isn’t a disease at all. it is known as chronic rheumatism, myalgia and fibrositis. 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. Rheumatoid arthritis and lupus are also syndromes.
The many physical and emotional problems associated with FMS are not psychological in origin. This is not an “all in your head” disorder.
Fibromyalgia is a common condition characterized by 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 trauma triggered mine. My pain- is not caused by inflammation.
I can not work with my pain, it`s not because I don’t want to It`s because 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, possibly due to sleep disorders. It is not well understood, but it is real.
My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, 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 your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the curtains or listen to your child scream. I really can’t stand it. this gets very frustrating, noises that have never bothered me before do now.
My intolerance – I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
My depression – Yes, there are days when I would rather stay in bed or in the house or even want to die, pain can cause depression. Your sincere concern and understanding can pull me back from the brink, yet snide remarks can tip me over the edge. I will improve, i don’t know when, it might be something little that will bring me out of it. Its not your fault and its not mine.
My sleepless nights – Don’t be put off by the looks of me in the morning, i might look like a zombie, this is because i have not had much sleep, my brain wont switch off, i have 100 and 1 things going around and around in my head, none of it makes since, i used to sleep 8 hours a night, now i am lucky if i sleep for 2 hours at a time. Sleepy days- Some days i feel so tired, my body weights a ton, my whole body aches, i have no energy, even though i have been in bed all night i am going to have to go back to bed again, please understand how i feel, i don’t want to live my life in bed, it is not my choice, the choice has been taken away from me.
My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely. My hands go numb and i drop things, i don’t seem to know how to control my own body, this is not a good feeling.
My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appetite is broken, and nobody can tell me how to fix it, if only there could be that magic pill. I don’t like my body like this and i cant 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 many different medications, i seem to be very sensitive, not sure why. Please bear with me if i seem ratty the meds cause all types of symptoms, ie: sickness, headaches, drowsy, legs/arm pains. 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 chocolate bar in the fridge, i try to have more control over the cravings and to eat healthy snacks but you always see me with the chocolate bar. Clumsy- I know there are days when you think i am clumsy, i really don’t mean to be, i know i drop things but it does not give me pleasure doing it, My hands don’t want to grip things, all the strength has gone, wish i knew where.
My legs feel like they have been set in concrete and i have to drag my legs. Lunch- Peeling veg is getting impossible as i cant grip the knife, this might seem a small thing to you but its a big thing to me. I want to prepare the dinner for you all, i am not getting out of it, its the pain stopping me. I might blame the onion for the tears running down my face but i don’t like to keep showing you my weaknesses, i feel useless.
This heat– is killing me, i cant cope with it, i know i used to be a sun worshiper but now my thermostat is broke i cant control my temperature. Dont keep telling me to wipe the sweat from my face, i know its there… do you think i like people looking at me. The fatigue is so bad all i want to do is sleep but it`s so hot so i need the fanon me all night, sorry if this bugs you, i dont do it to annoy you.
This cold weather– is really getting to me, i cant seem to get warm my bones really hurt today, that might sound strange to you, but its real to me.
My fingers and toes hurt with pins and needles, oh why is all this happening to me. IBS-bloats me and makes me feel sick, no 2 days are the same one day i might be constipated and in bad pain but the next I might be on the loo 5 times. I cant help that i have had to change my eating habits, I have to learn what is best for my stomach to handle. Even those who suffer from FMS are not alike.
I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else, we all have different pain levels. A lot of the same symptoms yes, but also some different. I hope this helps the non believer’s to understand just a little of what we go through on a day to day basis. Hope I have not bored you with this long post.
Thanks for reading.