My name is Fibromyalgia, And I'm an invisible Chronic Illness. I am now velcroed to you for life. Others around you can not see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or if I'm 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. try to have fun now! I also took Good Sleep from you and , in it's place I gave you Brain Fog, 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 recovered from, or that car accident , or maybe it was the 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 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. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL , not taken seriously as you feel when you cry to the doctor how debilitating life really is. Your family , friends, and co-workers will all listen to you until they 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 are just having a bad day" or " Well remember, you can't do the things you did 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're losing your dignity trying to make them understand, especially when In the middle of a conversation with "Normal" person, and can't remember what you were going to say next!
In Closing, ( I was hoping to keep this part a secret), but I guess you already found out...the ONLY place you will get support and understanding in dealing with me is with Other People With Fibromyalgia...
Thanks jazher - It says it all hmmm? I found that on the web when I was (finally, after years of suffering) diagnosed with the Fibro et al, about 6 years ago. I even printed a copy for the gazillion GP's at my local surgery to give them an insight to what us sufferers go through on a daily basis. I doubt any of them have a single clue about it though
This so explains some of the frustrations that I feel - I do want to keep on fighting - but it really helps to know that someone else knows what it is like. Thanks
very true, its a good thing to give workmates and relatives !!
You forgot to add that if you dare try to go out shopping and survive it you will feel like you are going to just drop dead from exhaustion when you return home and have to spend several minutes wringing your hand and with you head sunk down to your knees, before you collapse, that what happens to me anyway.
I don't know how anyone works when they suffer form fibromyalgia, I was medically retired last year, after first suffering from a prolonged virus, which wouldn'tt let me walk or move without crying out in pain.
When I wasn't any better after Christmas, and I convinced myself that I would be recovered then, and be able to go back to work, I realized my pains and confusion was getting worse, and was diagnosed in February by a rheumatologist, still waiting for them to write back to my doctor however.
I find the fibro fog very hard to deal with, my conversations outside the house have to be short so I won't make an ass out of myself, I don't bother with my old work mates and they cant ring me because I changed my sim, and most of the time don't answer the house phone, because I don't want their pity, because I always had an extremely good command of the English language, and cant handle it.
my family have to wait patiently when I speak because I always get my words jumbled, and forget what I was talking about. I have found I even make up the end of the sentence which is something I always hated in anyone else, but the words just come out, sometimes, I think it's my brain compensating for its shortcomings.
I have to write everything down, because it goes out of my head as soon as I think it, esp messages.
I'm finding it really hard to write this, I feel like my fingers just don't want to obey my poor muddled thoughts.
The remote control for sky really annoys me and it hurts my fingers to use them too much, I just most of the time let someone else choose, the programs, and I only watch some programs, as I lose interest.
My animals, my two dogs and 3 cats, keep me as happy as I can be as well as the love as my family ( and help thank God).
who can say we don't need help, Who can say we don't deserve all the help and benefits that we should get, without having to grovel, you feel like saying to them (doctors esa and dla) why don't you try and live in my body for a day and see what it's like, hate that.
My 'support' was taken off my esa, and I'm appealing. I was also knocked back for dla in December, which I'm going to apply for again in June.
I'm finding it very hard to survive financially, and sometimes feel I'd be better off dead, when I don't have enough money to survive, I also find the strange sleeping patterns really weird, I feel like I went to sleep one night last March and woke up a different person, wonder where's the old Claire, is she gone forever?
Must go my fingers feel paralized, glad to have found this site, the first for us to talk about our condition, and read others and helpful advice too.
I have asthma too, and diverticulosis, cant rem anything else now but I'm sure I will, i wish you all the luck and love in the world fellow sufferers, keep your spirits up, and thank you again, Claire xx
• in reply to
Tender Hugs Claire,
I mostly cope alone - though on occasion, my daughter comes across town to keep me company, bringing my 8 month old grandson with her, and to fuss over me a while. I've been a sufferer since I was 12 - though only listened to, sent to specialists and diagnosed finally, about 7 years ago. I fought for 2 years to get DLA. So keep fighting for all benefits you are entitled too! And if you travel by bus, once you do get DLA, apply for a disability pass for free travel.
I too feel I'd be better off dead - Especially on the days I feel I'm going out of my mind with the pain etc. The tiredness and exhaustion wipe me out. My life is certainly not what I wanted it to be like...I rarely leave the house anymore unless I really have to. And knowing I'm not suffering alone makes me feel less lonely too. I cling to the old Carol tentatively, by my sense of humour. I know that once that goes - then I've lost me .
Typing this response to you is crippling my hands already so I will quit now.
Good luck in your battle with the DLA people Claire. Goodnight - I hope you get some decent sleep tonight.
Well said Claire. How you managed to type out all that I don't know, you must be in agony now. You put it exactly as I would have liked too. I had a small car accident in 1998 and they kept treating me for worsening arthritis even though I told them that "this feels different" Then like you I had a prolonged virus that stopped me dead in my tracks. Only then did they consider fibro. Like everyone else here I'm struggling financially and had my support removed which is worsening the depression big time. Take care my friend, soft hugs xxxx
Thank you 'speedqueen9', yes it hurt my hands badly, they hurt all the time, I was out for a little while and tried to lie down after dinner and could'nt I felt too sick, had to sit up a while. Imagine suffering so much you can't lie down, only fibromyalgia sufferer would understand that.
Do you know what I hate about trying to type, more than anything I keep leaving loads of letters out and making mistakes, and then have to constantly correct them, they just won't type write!, I'm sure everyone finds it pretty much the same.
I was sending an appeal off today for to get my capability for work taking off me again (which will give me more money, as they took that bit of support off me)
i got my son to type 4 extra pages for me to explain my illnesses, the wrotten buggers that they would take it from me
anyway do they think we make everything up?
Also they based their desision on a report the doctor wrote last year, rather that writing to him again (he wont write a report until they write to him first and ask for one), and before firstly writing to the Rheumatology clinic ( my official report has'nt been received by my doctor yet as it takes 2 months, so should be there anyday., although the Rheumatologist told me I definitely have fibromyalgia.
So I'm knackered, I hate being totally worn out because it's very hard to relax, take care anyway and thank you xx gentle hugs xoxox
Thank you Carol, isin't this a brilliant site!, don't feel anyone else really knows how we feel apart from all of us!,
Sorry to hear you've been suffering from this for so long, God love you, and thank you for your support, I will keep trying for all my benefits, as hard as it is.
Yes my I know what you mean by keeping a sense of humour, I do try and keep mine too and I know I'm having a real bad day when I can't even smile, hate those days.
Yes I rarely go out too, maybe once a week and it wrecks me but if I don't try I feel confined, trapped. It's a lonely disease, I tried so hard to-day to do what I had to do when I went out, I feel like I'm losing my mind, it's as it my brain cells could'nt handle any extra activity, though it eased my mind (slightly) to learn how that does happen, and it's normal for anyone suffering from fibromyalgia, you would think on that basis alone it would be passed with flying ease with the dla/esa would'nt you?
Thank you Carol and good-night to you and similar wishes are wished for you
Take care
Claire xxx gentle hugs xx
• in reply to
It sure is a brilliant site Claire! I feel more at home here than well - at my own home!
I have always said that once someone is absolutely found to be 100% a Fibromyalgia sufferer, they should automatically be classed as disabled and given the appropriate monetary benefits. In most cases it's not even acknowledged as anything more than usual aches and pains by GP's and it's a heck of a fight to get a GP that does acknowledge it - then have them send you to a Rheumatologist for confirmation and then battle to get the DLA - I was told by the DLA, that unless it was positively confirmed by said specialist - then a person cannot claim DLA. Even though I had a thorough diagnosis and confirmation, I still had a 2 year+ battle on my hands to get DLA!
as a fellow sufferer of 20 yrs I couldnt say it any better apart from the fact I think it gets worse as you get older or its the effect of the years it beats the hell out of your body!!!
I agree - It DOES get worse as you get older - and my body has certainly taken a damned good beating to prove it too!
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