5 Things I Wish You Knew About Fibromyalgia
Fibromyalgia, it is a bit of an unknown.
I’m sure most of us know someone who has it, but what actually is it?
I’ve heard people say it’s just people being lazy. I can tell you for a fact it isn’t.
I would do anything to go back to the days before things hurt when I had the energy to go out and do things. I quickly went from someone active and beginning to enjoy my life, to someone who couldn’t get out of bed some day.
The only reason that could have been behind it, was swine flu.
It is unknown if fibromyalgia is something that runs in families. However, interestingly my birth Grandmother has also been diagnosed with this horrid illness and of course, being adopted I didn’t grow up around them, so perhaps genetics do play a part. Or perhaps we were both unlucky?
If you are looking to find out more about fibromyalgia, what the signs and symptoms of this chronic disorder are, what the possible trigger points could be, or if you have been recently diagnosed I hope these 5 things I wish you knew about fibromyalgia help.
Just Because I Look OK Doesn’t Mean I Am.
I have a blue badge, it helps me get to the shops, sometimes I feel a fraud getting out of the car and walking away.
However, it is only on a good day I go without a wheelchair and instead use crutches.
It can also take only a moment for a good day, to turn to a bad day and I have to be more or less carried back to the car by Ash.
I’m Sorry I Can’t Come and See You.
Fibromyalgia has an effect on friends and family. Many don’t understand how you can go from seeing them, to texting sorry I can’t today.
It’s hard to understand that someone with all they have wants to come and see you, but can’t.
However, it’s harder being the person who can’t go out. Having to say no, missing out on the normal interactions of life.
The Weather Hates Me.
Yes, I’m sure I drive people insane complaining it is too hot or too cold.
However, my body can’t deal with extremes. If it’s cold I turn to ice, if it’s hot I burn up. It’s like someones turned the thermostat in me and I just keep on going in one direction until I feel very ill.
Pain is Normal, But Some Days Are Better Than Others.
I am always in pain, the days when I say I’m good, I just mean the pain isn’t so bad.
Sometimes pain hits me and I’ll yelp, I’m sorry, it can still take me by surprise after all these years.
Fibromyalgia is Different For Everyone.
Do you have a friend who has fibromyalgia and can do lots of stuff? GREAT! But that doesn’t mean someone else with it can.
Looking back I can notice Fibromyalgia symptoms back in my teens, through times I was very active.
I believe I got bird flu, which originally kicked it off to a lesser level and then the swine flu kicked it up a notch. I can’t prove it, but looking back on my symptoms I think it is a feasible theory.
I hope that one day there will be more research into Fibromyalgia, it is very much an unknown in many ways, which is a shame for all those suffering.
If you have fibromyalgia, what would you like others to know about it?
Pin it!
A lady I work with has this and I feel really bad for her. Every day she struggles into work but she has a different pain every day. Mainly neck pain for her recently. It really is an awful illness.
It is so hard to know where the next pain will pop up – I’ve met a few people who find it effects one area in particular more than another!
Big Hugs Sarah, I know it’s not easy having fibro but it is more important to be kind to ourselves. Sometimes we are so hard on ourselves but it is so hard because we are the same person in a different body. I know I kick myself and wish I could change having it. Because we are always so hard on ourselves.
So try to be kind to yourself Sarah. You deserve to have a happy life. x
Thank you – I’m finding it so hard this year I have to admit, I feel fatigued all the time and feel like I’m letting everyone down as I just don’t have the energy to do much. Even a shower wipes me out for days.
I have fibromyalgia and polymyalgia, and a long list of food intolerances, just to make life more interesting. My condition was also triggered by a serious viral infection. It’s the little things that bug me, I can’t get dressed or undressed by myself, brushing my hair is exhausting, I need two hands to lift a cup of coffee, if I sit down I can’t stand up. Last saturday I fell over in the house, I was trying to reach something on the window sill, but the armchair was in the way, so I knelt on the arm and slid off. I cracked my forehead on the windowsill and gently slid down the side of the chair, one leg on the chair the rest of me on the floor and I was completely stuck, luckily my partner came in just then, but it still took the two of us 5 minutes to work out how to get me upright. I left like such a plonker.
It’s so hard isn’t it – I got into a bit of an argument with someone who suggested someone with health issues should just “get up and carry on” like they do when they are out running?! It absolutelty astounded me that they were that disconeted they thought someone with mobility issues could just get up them same them?
Fingers crossed it is something you never have to deal with.
Oh, my goodness. Looking at the Tender Points diagram, I wonder how those with this condition manage to get through each day.
Ash has the ability to get me in one with just a small touch and oh my gosh!
Such a misunderstood condition, not helped by the fact it affects so many sufferers differently. My left hand side is worse than my right, but both my legs feel like lead and I can barely walk or stand any more.
It’s so hard isn’t it – I wish more was known about it and what causes it and why its so different in people!
So mis understood by many still – I often get called lazy or comments such as you are making it up
It’s so bad that people still think that – it is absolutely awful to live with.
I think this area needs some serious research – treatments are scarce and a cure is a dream. I had never heard the flu links before but I had heard of links with mental health issues.
Definitely it seems to have just been given a name and then left, surely there has to be more they can do.
Thank you for taking the time to help spread more information about Fibromyalgia. I must confess my ignorance to the exact symptoms of the condition, but now I can be that little bit more understanding when I see someone suffering from the condition.
Thank you for taking the time to read this and understand it a little more, I am very thankful for people like you.
This is really insightful, I have not read about this before
I’m glad you found it insightful thank you so much for taking the time to read it.
I don’t have fibromyalgia, but I do have chronic pain. My husband doesn’t understand that the fact I did something yesterday doesn’t necessarily mean I can do it today (in fact, doing it yesterday is probably the very reason that I can’t do it again today)!
Yes! I went out for the first time in a long time only to the theatre last Friday used my chair and yet I could barley walk around the bungalow the next day, it is crazy how something which isn’t much to many can cause such issues.
I have a friend who suffers with fibromyaglia. It seems to affect her shoulders and back in particular. I hadn’t even heard of fibromyalgia until she told me about it.
I’ve talked to someone else who said it effects their shoulders a lot – I hadn’t heard of it being in just a specific area before then!
Posts like this are important in order for there to be a better understanding of this awful condition. There’s a salutary lesson in your statement: Just Because I Look OK Doesn’t Mean I Am.
Sending you best wishes.
I remember many years ago being told “you don’t look like you have mental health issues?” I’m sorry what does someone who has mental health issues look like?! And I think it is something that happens to people with any sort of chronic illness be it mentalh or physical.