hi

[jaccoz]

friends my dear friends we all no how our fibro affects our family and friends too.i still have problems with people just not getting it have u ? xx

[haribo36]

Hi there,ive always had this problem ever since diagnosis 6 years ago.People saying how well you look for someone who is meant to be ill and the like.It is so frustrating,and ive even had it from G.P`s as well with them not believing how much pain iam in.I often used to think that i should be in a wheelchair so people would beleive me and ive even purposefully made myself look unkempt before so people might beleive me,however alot of the time i havent got the energy to look the best i can so that ones not hard to do lol!It would be helpful if people could see just how much we suffer on a daily basis,sorry if spelling is bad.Lots of fibro hugs xx

[jaccoz in reply to haribo36]

yes i understand .i had an rhum app and at the time i was on a good day .she said ive got good joints and movement .i was gutted that she never saw me when i cant get out of bed and in tears with pain i felt like a total fraud .but she knew ive had fm since 2001 and understood.yes ive had the ...oh u look well today.ive felt like sayin im still in pain but its manageable today but i just say thanx and change the subject xx

[Extremelygrumpy]

Oh deffinately and the worse thing apart from finding people and professionals not realising/ believing is the letting people down... I am supposed to be a a wedding on saturday that's why I pleaded switch my gp to give me something for the pain so I can make it .. He refused now I am praying things will settle down before Saturday so I can go... Have booked a mobile osteo to see if she can help .. But that's money I don't really have and would have been spent on taxis getting to and from the wedding adding to the stress which doesn't help. Sorry to rant on in your thread

Verygrumpy xx

[jaccoz in reply to Extremelygrumpy]

oh no i hope u get to ur wedding .its horrible i know .i plead as well 4 stronger painkillers but ive other things going on and the doc can only give me cetain meds and its not fair i know.i hope u get something sorted xx

[shazzad]

I feel the very same! But people do not realise how much you actually do cut yourself away from society.....home alone, so if like me when you do make that hard effort to do your hair or make up people seem to forget that maybe most of that week you couldnt get dressed or felt so low you the last thing on your mind was make up! Sometimes i sit on my bed willing myself to get dressed looking at my clothes staring back at me! And i know its wrong but sometimes i wish that those people who do not understand life with an invisable illness would would try it out for themselves for six months or so, dont wish ti be too mean and say they grt it as i would'nt wish it on anyone xxx

[jaccoz in reply to shazzad]

im a loner .well ive got my kids still with me and ive family n pals but its got to the stage id rather not speak about me .its not like a broken leg eh ? wish it was and then it wd b fixed.i hardly get invited to anything beacause im too unpredictable as u know each day is different .i do feel very alone maybe thats selfish as some people have no one but thats how i feel at times xx

[Hidden]

Yes I think I am slowly coming to the conclusion that the need to be believed is part of the illness. I come from a big family and only one accepts there is anything wrong with me. My mum is 90 and has just had a bout of labrinthitis. She has experienced her own invisible disease and now accepts. I've been diagnosed 14 years and she has understood for 1. I don't think many humans can accept unless they have experienced something similar for themselves.

So I've started to ask myself why I'm so desperate to be seen to be ill. What am I gaining from needing to be so visable. I don't go to my GP any more. I go to an alternative clinic where this illness is understood.

Benefits are a major headache, but because I'm married I can't claim anyway.

I've had some little business cards made up, so when people ask why I can't do something I go e them one of them. They say fibromyalgia is... And gives a list of symptoms. And ends with ....just because I Iook ok doesn't mean I am. Very helpful when using a disabled parking permit

So why do I have to broadcast my illness and waste energy fighting to be believed? I think it's because I haven't really fully come to terms with it myself. If I KNOW something to be true it no longer matters If others haven't got there yet x

My illness is my business. If I need support I have to arrange it or choose to do something different. If I have no expectation of understanding then I can't be disappointed. It doesn't mean others dont care. X

[suejayjay in reply to Hidden]

stepper, these are my sentiments also. On the one hand you don't want to go round martyring yourself and the"poor old me look", but on the other hand when you can't achieve what you used to do it is so frustrating. I know I am under performing in my job. Have only had this job a year and I know my boss thought they were getting more than I am actually able to give. But how to explain that you still look the same as a year ago, but can't actually do what you used to do anymore. That you aren't being lazy or sloppy in your work etc. At the moment I am trying to gear myself up for a trip to Tesco and then to visit my disabled husband. BUT I have got up and have had a panic attack?? Why?? Who knows. What is there to panic about? The Dr. told me there is nothing wrong with my heart, lungs, blood pressure etc. And even though I feel as if I can't breath properly, there is no medical reason. I just have to keep telling myself this. But how do I say I can't do this or that when I look perfectly OK? Especially if the day before I have been able to walk the dog and do some jobs in the garden? It doesn't make sense to me let alone anyone else. Thought now the pain patches had helped with the chronic pain I would cope better, then I get another curve ball thrown at me. It is just comforting to know I am not the only one and there are many out there much worse than me. I just have to hold onto that thought.

Re parents understanding. My mother has at last recgognised that I do have a problem. Only because a friend of theirs has recently confided that they too have Fibromyalgia and is so bad some times that they have to have pain killing injections. Coincidently they had menigitis as an adult as did I and that seems to have been the start of the problem. I read an article when I was first diognosed from America, that believed that head/brain trauma could be the trigger. Anyone else seen/ heard this?

Best wishes.XX

[rainbowdancer in reply to suejayjay]

Hi I had a meningitus virus back in the seventies and my VFS was traced back to that time,Fibro followed and the stress I was under did not help. My family also do not understand. I have even had people say Oh I get tired so I could have fatigue sydrome and laugh. Biggest thing is when I am feeling low my daughter says Oh there are people much younger than you with Fibro etc think how it would be if you were 30+ and had kids to look after blar blar blar..... Er I was but as a child she never knew as I tried my hardest to hide it. I think the hardest thing is when you try to do more and still get told " pull yourself together ...just think of others worse off than you !!!" It is hard because it is happening to you !!

Today I am having a day where I feel angry and I know this will make me more tired...but my family just think I am in a mood , when what it is really is frustration!!

Well every one Gentle hugs and know that everyone on here knows hao you feel x x x

Rainbowdancer x x

[suejayjay in reply to rainbowdancer]

Thanks Rainbowdancer. I think the reaction of the family is the most hurtful isn't it? Sometimes you are"damned if you do and damned if you dont" Doesn't matter what you try to do for the best you always get it wrong! Take care. Xx

[rainbowdancer in reply to suejayjay]

So true ny lovely ...Always here thank god I found this site as I was sinking fast

Gentle hugs x x x

[Poochywoo in reply to Hidden]

You are so right, I have to admit I've never thought of it that way. None of my family understand how I am. My daughter sees me a couple of times a week and thinks she knows what it's like. She doesn't see me first thing in the morning or at any time when I'm struggling to do the simplest of tasks. I swear if I hear 'pull yourself together' one more time I'll scream. X

[jaccoz in reply to Hidden]

yes u get people asking whats that ? oh ive never heard of that.i now just say pain every day on different levels and quickly change the subject as i feel i bore them.brill idea with ur cards .my kids are the only ones who get it and they get angry at times when im sleeping and someone wakes me .im too soft to say anything myself xx

[jaccoz in reply to Hidden]

i find it tough 2 accept 2 .yes we dont go round cryn 4 ourselvs .gd idea on the cards tho. soft hugs xxx

[teresa-67]

i soo feel the same although my family and some freinds are getting better i feel its the medical proffession that have the hardest believing we are unwell x i like to try and keep my self presntable nice hair look after my skin on days out like to put bit of make up on as i believe making yourself look presentable helps you feel good in yourself even though it such an effort to do i always get comments you don't look ill you look so well if only they knew the effort it had taken just to make us look presentable, if only they knew how we felt inside, if only they knew how our bodys ached, if only they knew how that just because we are ill doesnt mean we cannot look how look, if only they knew WHAT FIBROMYALFIA , RHEUMATOID- OSTEO ARTHRITIS , DIABETES , ASTHAMA AND ALL OTHER NON VISABLE ILLNESSES WAS they would understand more awareness is needed to help understand us x take care and don't be ashamed of who you are xxx

[jaccoz in reply to teresa-67]

u dont look like theres anything wrong with u .or u look well .arghhhhhh .feel horrible n feel like sayin oh by th way u wouldnt like it .anoys me so much .i say oh i love all my illnessess thyr my friends dont know anything else eh xx

[Petra]

Hi there this is so true.Everyone says you look well and I fell dreadful.I sometimes wonder if they need their glasses changed.I am struggling to walk unaided and have no makeup or jewellery on, you sometimes just cannot be bothered can you?I too am surrounded by clothes, yes they have been washed but I have no eergy and the pain is so bad I cannot hang them.My hubby is just receovering from a hip replacement almost a month ago and has offered to help, but I am an independent person and feel he shouldnt be helping me.I always help other people but this year everyone has been away on holiday or busy,Sorry to rant but sometimes the flares go on for so long everything gets left.We have had to cancel all our trips away this year mainly becuse I have not been well colds, food poisoning, fibro.I know things will get better but life is s struggle at times.I agree some folk should experience the pain we go through and the other symptons which are unpleasant.They complain about a "pain" or other health issue but they know and so do we that it will get better.We have fibro for life and have to get by the best we can with blogs like this to help us.We are all fibromates on this site and may it continue to be that way.We can get rid of at least some of the stress inside our minds and that makes us feel better and not so alone.Have a good week everyone we will survive and we must help everyone else to cope with life in this cruel way we have to.Gentle soft hugs to everyone out there.Hope you enjoy the wedding pace yourself and you will get there. xxx

[sharonissexy]

My ex-husband never seemed to apreciate what i was going through (even though I spent a whole year on crutches!!) He used to say "my mum has arthritis and she's always smiling so why are you so miserable, just pull yourself together" Please note I did start this by saying he's my ex-husband!!!! lol.

I now have the most wonderful partner, who is 26yrs my senior, that understands what i can and cannot do. Who says he wishes he could take my pain away.

xxx

[beth2]

HELLO I know how you all feel above I feel the same way have had bad fibro fog the last two days and so much pain we did have friends coming round later but my hubby has just phoned and said I am not well these two friends will understand but others that we have would not I hope all you lovely people have a nice day take care love beth x

[helle]

hello to you all, so sad to hear that so many of us are suffering! and feeling misunderstood. by people that dont get where any of us are coming from! i feel im forever having to justify every dam ache,pain, and the dreaded fybro fog!! or someone saying OH WHATS WRONG NOW! makes me want to scream! sorry to rant. im aslo trying to find some energy to get dressed or maybe have me a jammie day lol, gentle hugs to you and wish you a good day xx

[spidergirl44]

Hi everyone, I have been reading all your comments and agree totally with everyone it is so differ cult for us all, with the misunderstandings of others, I suffer in the same way day in day out my flares never seem to go away, i too work when i can, so do my hair and makeup and get all the comments '' or but you do look well'' after doing lots of research I found this web page wikihow.com/Help-People-New...

and it is Brillant it should be sent to all the none believers the information on it should make them all stand up and take notice, I hope you will find it a big help to send to family and friends I have and I think they are beginning to to realise that not every illness can be seen!!!!. Soft hugs to everyone xxx

[Cinnabar]

I was diagnosed with FMS fairly recently, though it is now clear that I've lived with the symptoms for quite a few years. I also have other inflammatory conditions (mainly of the spine) that can easily be confused with fibromyalgia so it is no surprise that diagnosis was delayed.

It is certainly true to say that fibromyalgia affects every part of your life. It is a condition that is clearly mis-understood (even within the medical profession). And yes, we 'appear' to be fairly normal most of the time. How little they know!

[Hidden]

Thats a brilliant link spidergirl. Thanks x

[spidergirl44 in reply to Hidden]

it.s good to share the link I think everyone should pass it around and then family and friends may start to understand how we feel, :)))). I hope it works for you soft hugs.xx

[Hidden]

My heart goes out to each and everyone of you ... I Do UNDERSTAND...but stuggle to have Understanding as to why, how and where the hell this " vast hole of debilitating issues we all fell into".. I want to make it all better for me, for you and for those with "family" who do not comprehend ( just like mine) to bring an ounce or two of understanding compassion for when you are lost, lonely, hurting, trying to make sense, even trying to make a cup of tea without scalding or breaking the cup ( thats today, perhaps not tomorrow, but definately yesterday) .. it can all be too much without a "gentle" hug from a loved one in support.

So today... here is my hug to you all.. (<3)

Look after YOU. X

[JacqDobson]

A Letter To "Normals"

Having FMS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS/MSP and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand...

These are the things that I would like you to understand about me before you judge me....

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy”. When you've got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time; in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, "Oh, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of disease you’re either paralysed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what FMS does to you.

Please understand that FMS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct.... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.

Also, FMS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it cant be put off or forgotten just because I'm out for the day (or whatever). FMS does not forgive.

If you want to suggest a cure to me, don’t. It’s not because I don't appreciate the thought, and it's not because I don’t want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there were something that cured, or even helped, all people with FMS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, and if something worked we would know.

If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you.... people who are not sick.... I need you to visit me when I am too sick to go out.... Sometimes I need you to help me with the shopping, cooking or cleaning.

I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you. ...And, as much as it's possible, I need you to understand me.

[spidergirl44 in reply to JacqDobson]

Well said I agree and understand totally xxx

[Hidden in reply to JacqDobson]

I am in tears reading this ~ such truth ~ Thank you I may just copy and give to my family... Bless you... <3 x

[JacqDobson]

It's something that I was given when I was first diagnosed with FMS 15 years ago.

[Hidden]

I have an agreement with another me sufferer that when we meet up we greet eachother with....God you look awful today .....lol it turns some heads I can tell you. I think.often people just say... You look well....just for something to say! No thinking behind it at all

The ones who try and say.....of course you can, just go do it......That's the ones I struggle with.

I usually just smile and do my own thing. Their ignorance shows through.

I refuse to take it on board any more x