Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, ...
the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!
In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.
How very depressing and how very, very true. Again, thanks for posting Lacey...it seems that you have a wealth of interesting Fibro stuff to share. Jane x
Wish it wasn't but this is so true. Trying to explain to someone who does not suffer with this is a nightmare. Hope you don't mind but I am sharing this with my family and friends, it's written so well.
Oh, how beautifully put. Well if you can put beautiful and fibro in the same sentance??! How I wish that your most edifying insight into this 'Velcroed fiend' could be put out in pamphlet form and left in Drs surgeries or chemists or anywhere else that would make the "general public" take note that this thing is real.There are pamphlets on practically everything else. Will share this with others who disbelieve. XX
How true well said and how sad. Guys we must not forget to look on the bright side of life if we possibly can. Try and be an optimist we have a horrid complaint that we are saddled with but we ARE a live and can make choices so try being as happy as you can smiles from me it lightens the load we carry x gins
Brilliantly written Lacey and I too would like to share this. I also agree with gins that we must continue to be "optimistic" and as happy as we can even though, at times, it is not easy. Very gentle and healing hugs to everyone and hope you are all enjoying a bright weekend. xx
Bless you all.... share away... spread the word..
Have a thought .. how about we do a fibrofriday.. every friday we post one good thing.. positive outcomes or feeling or anything with the "up" vibration... We all get through each day as best we can.. and whilst we dont mean to be negative in any form.. pain can make us feel this way.. I for one go within.. and of course not forgetting the forgetting.. So if we can remember.. ( especially me).. that Friday is Positive Fribo Day... And each of us ( if we feel up to it) post a little antedote.. or just some words or a smile..anything as long as it is in the positive.. a hug or some thing to make us smile.. what do you all think?
I know what about "Thank Fibro its Friday"... mmm or "Thank Friday its Fibro".. giggle...or if you can think of anything better I would be most grateful xxx
It certainly could put a twist on things...
For now much love to you for all your comments... and hope that you and your velcroed fiend.. have better days.
How Well you have Written this...and so very true...made me cry just to read it and know that its all so true...thank you...x...(p.s I am Female not Male as my profile suggests but cant seem to change it )
Ouch. That hit a nerve. It sounds like HE is personally taunting me and taking pleasure out of it. Some of the symptoms he points out I was experiancing right this second! (Like shivering). But wow. Well done. You've got the personification of this illness right down to a tee, lacey - that takes some real talent - I noticed how you put the word 'able' in capital letters too (I'm been scrolling across the comments and seem to be the first to notice), showing that even if Fibro sticks, we can still make some choices and there is hope. The the fact that you are such a sophisticated writer in expressing this - even against the fog - also proves this - so well done you.
Great idea for Positve Friday peeps, I already have a great idea for mine! (Remember folks, it may be uncomfortable to do, but even when velcro sticks, we CAN peel it apart - that's why I love this analogy so much... I don't want to be unrealistic here, but the prognosis for fibro is getting better each day. Velcro doesn't stay stuck forever - even if peeling it does take away!)
Ohh! And I love the picture too. It's so beautiful - like bringing the truth into the light, out of it's hidden depths. xx
even when it feels uncomfortable to do so, we CAN peel velcro away. It just isn't easy. It may take a while, but velcro doesn't stay stuck forever! (might be a better way of explaining it.
tc, keep smiling, and gentle hugs. xx
yes ABLE cos we are ABLE and willing to try anything to alieviate, to not give up and to Beat this depressing illness as that what it is .. leaves a depressed state in the energy of pain.. and all that goes with it... Yes we can and do have moments of clarity fun and laughter and ease.. where there is a sigh of relief for what... an hour.. an afternoon? And whilst there are many many other horrid things in the world this is happening to us.. with I feel so much ignorance and miss-under or non- Understanding from non sufferers.
Well my dear beautiful fibro friends, I think we should do a Friday Fibro.. and lift and fight with all our might... so to become stronger together .. fibrofighters here we come..
Now it's something like this that should be posted on NHS and Patient care websites, also every Hr department including DWP!!!! From being a person suffering in silence I, due to this site have become a very confident fighter for us FIBROMITES at work. Well done Lacey 777, and your idea of a POSTIVE FRIDAY MESSAGE is a great idea. XXXX gentle big hugs
Hi Lacey, I like the way you make Fibromyalgia a living tangible thing, rather than an invisible insipid and unbeatable monster (which for the most part, it is). By turning it into something that everyone can understand, it loses some of it's power over us. Being positive and optomistic is not easy with this condition but that's the only way to beat it. Although I am in pain most of the time and I also have Crohn's Disease to boot, I am still able to work and do most of the things I used to do, albeit more slowly and with the guarantee of being totally exhausted afterwards, and I try to be as upbeat as I can. Or it could be that my Fibro isn't as bad as most of the people who have posted their comments on here. If that's the case, I'm sorry and my heart goes out to you all as I can't imagine how you manage on a day to day basis.
I am going to show your blog to as many people who will take the time to read it. It's brilliant. Thank you and gentle hugs to you and all the fibromites.
That line really upset me too. It's so unpredictable how it can affect your life day to day. Try to keep to most of my plans, but when I feel too ill or miserable to enjoy it..what's the point? ..
I was upset by the end too.. About family, friends, co workers talking behind your back..until you feel you slowly start to lose you dignity. It brought back a lot of raw emotions from before I was diagnosed (someone who I thought was my best friend snappily said to me 'I don't want to be mean, Fay..but maybe it's in your HEAD!' and even some of my teachers (I'm in the sixthform) used to tell me off for being slow and disorganised at the time..It was horrible.
Husband read it out to our eldest tonight, she is in her early teens and by the line of childbirth she was crying along with me..(who blubbed all over again!) and we hugged and had a talk together and altho she is very understanding she really got it all and understands even more... so now I'm trying to scrape £15 together as she has a trip to go to on Saturday and I would like her to have some spending money...
Well this has been a good day today, I feel like i've made a few new friends who understand what it feels like to be waiting to get a diagnosis and all the aches and pains that go along with it.
Hope you are well, after nearly 6months of waiting for a referral I've got my appointment for the rheumatologist, just hope they dont fob me off! Really hope you get yours soon. Sounds like you have a very supportive family which is amazing 👍👍 Take care
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Again, thanks for posting Lacey...it seems that you have a wealth of interesting Fibro stuff to share. Jane x
xxx
Functioning - only just!
Help with lack of sleep 💤 
Has anyone heard of \"Substance P\" and \"Tropisetron\"?
Wish I hadn’t got Fibro diagnosis. Doctors won’t listen now
