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Fibromyalgia Action UK
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i wish i was dead

This illness has just ruined my life, I let my family down all the time through it and I cant seem to make them understand that its not a case of me not caring enough about them its because i just cant make the journey sometimes to get to see them and im in so much pain all the time that i have no patience to start to explain it all over again, I have a partner that will neither help me or leave me, he has read all there is to read about the illness yet choose's to ignore it so he can just tell me how lasy I am all the time and will never help with any housework or even go to the shop for me. I used to run my own business and I had a great social life etc now I have nothing or no one at all. The dhss stopped my money telling me this is not a reconised dissability so i now have to face an appeal at the end of this month which i am so not looking forward to as i dont know what i will be like on the day. And my memory is the icing on the cake but thats yet another part of this horrible illness I really wish i could just shut my eyes and die.

27 Replies

Hi, I am so sorry you feel this way, please stay strong

If you need to talk to someone urgently the Samaritans are there 24/7 and it may help to talk to them 08457 90 90 90

If at all you feel any overwhelming feelings please contact NHS direct, you GP surgery in the hours of work or go to your local A & E. Health Professional who are trained to help can discuss your feelings with you and a treatment plan

I am so sorry you feel so stressed at the moment and we are here on the forum to support you through this time. We are here also to provide the best possible advice too

I know you feel bad and most members would agree at some point we have all felt this way and this is why we can all provide you with empathy & understanding.

Please consider ringing the Samaritans as many members have mentioned that they find this service in particular and please message back later

Sending much strength to you


1 like

Hello Dyedye, I am so sorry you feel so low at the moment. Please know that we are here for you at all times and we do care for you and about you.

You haven't let your family down, it isn't your fault that you can't make it to see them as often as you would like.

Sometimes when we are ill, we tend to forget that our partners and families suffer too. Sometimes this happens through lack of communication, lack of understanding about the illness. This can cause relationship problems between families and also our partners too.

Our lives do tend to change quite radically having Fibromyalgia, particularly if we find ourselves not being able to work any more and then financial worries escalate.

If you would like the Benefits and Work info sheets on ESA and DLA, please email info@fibroaction.org and we can send you them for free. They contain lots of useful info on completing forms, assessments and appeals. You may find these help you with appealing.

We will do all we can to help and support you along the way.

Have you considered going to the CAB (Citizen's Advice Bureau) they are specially trained and have a wealth of info and advice which also could help you with your appeal.

Tackle one thing at a time, don't look too far ahead. One step at a time is a good philosophy when having Fibromyalgia, that way we don't tend to over load ourselves quite so much.

I hope things start to settle down and improve soon for you, we are here for you at any time.

(((hug))) xxx



Hi I am so sorry for you. I know that doesn;t mean much when you are at rock bottom. As said above we have all been there. I turned round when I went to the pain management. It does take time to get there so you need to get your gp on your side. Explain to him or her the way you feel dont be afraid to cry, Tell your gp that you need help with your illness and the social. Its surprising what difference it makes. My gp didn't know anything about fibro when I first saw her. There is medicine out there that can help its up to you. Go for it.

Good luck and much love. Every person on this site is here for you.

Take care

Bye for now love Annex


Can I ask what medication you are taking? I felt like you too last year and was even sat with a cut throat razor to my wrists, but I didn't do it. I had been a successful contract manager with a good salary, company BMW, house , partner etc. and I lost everything to this illness, plus my partner was cheating on me at the time while I was in hospital. I was told that because it had all happened in a short space of time that it was post traumatic stress disorder which is why I was depressed and suffered anxiety problems. I was on high doses of co-codamol, Tramadol and morphine for the pain and had been for nearly 18 months when the maximum you should be on them is 3 months. I took it upon myself to stop using these three meds instantly (you are supposed to wien off them) and within 48 hours I was a different person, like a cloud and weight has been lifted. I was no longer suicidal, which was the main thing. I have now founded a charity to help people of any disability for whatever reason, but the biggest is to get people through these upcoming welfare reforms, so you can turn that frown upside down so to speak.

What I am trying to say is you can get through all this, but you go down before you can go up, but remember, when you are at rock bottom, things can only get better. Take care and please try and be positive even though it is so hard. x


How on earth do you manage the pain? Jaks


I am new to this. My question was for Sparkymark who said he stopped all painkillers and felt better Jaks


The pain killers that I stopped using were co-codamol, Tramadol and Oramorph. When I came off these, my pain levels stayed the same, so the meds weren't actually doing anything, plus long term use can cause more pain. I moved on to Pregabalin and take 300mg in the morning and 300mg at night, plus 20mg of Amiltryptaline, 45mg Mirtazapine at night which help with sleeping. What I am trying to say is that normal pain meds do not work for fibro pain as technically there is nothing physically wrong, its the nerve signals being interpreted wrong in the brain due to an imbalance of neurotransmitters, so things like Pregabalin, Amiltryptaline, gabapentin, citalopram and Mirtazapine do work as they change the levels of neurotransmitters. Don't get me wrong, every day is painful and a struggle, but mostly it is manageable providing I don't over exert myself....


H i SparkyMark Thanks for your reply. I am new to this condition so I am looking to gain knowledge about it. The common factor seems to be that each person has to manage their condition in a way that is right for them. I am finding this site very useful.Jaks



My goodness, that was a sack load of painkillers.

I can't get over people being given Oramorph and for you as well as co-codamol and Tramadol.

Am not saying that I don't believe you have a lot of pain.

It's just that thing about us growing immune to the effects of the painkiller.

I had to cut back on Tramadol for it to help me.

I have some Oramorph in the fridge left over from an op a few years ago and have needed it a few times.

But don't think my doc would give me it for my pain.

Also Co-Codamol is difficult because it's addictive.so you're right.

Have been on same combination for 13 yrs Tramadol and Paracetamol, Ibuprofen during the day. What effect has Pregabalin had for you?

All best Hope


The Pregabalin was rough at first, made me feel, for want of a better word, stoned at first. After about day 3 I felt better, but it still can make you a little wobbly. It does help though, keeping the pain levels manageable, but it does nothing for the fatigue or sleep deprivation. I have not had to use the co-codamol or oramorph for some time although right now, I feel like taking it. The quick changes in the weather are having an effect on me I think.... Anyway, soft hugs to all those reading this, hope it stays manageable for you. :)

1 like

Hello dydedye. Gosh you sound so lonely and sad. This illness is so isolating, even when you have a supportive family. I have been through similar feelings and the desparation that you are so obviously living/existing with. My way ,eventually, of improving things was to get rid of things that were adding to my problem. Work, relationships, expectations all out. I knew the only way to help myself was to clear out. I lost a lot, but it was good to be free of the demands they all brought. Back to the bare bones really. It meant less having to explain myself, less disappointment in others who for one reason or another, weren't able to support or see my need for help. I had to put my needs before others for the first time in my adult life. Slowly I have begun to adjust to having fibro in my life. I'll never accept it, but it is here for now and it does affect my life profoundly so I've decided do what I can or go with the flow,. I don't have to apologise for it anymore and that has really enabled me to start to rearrange my life to meet my needs as it stands. Please use this forum to talk your way through your dark times, you'll feel great relief in getting it out there and away from your thoughts. You can't always get support from those you can physically encounter but meeting and talking to friends in a similar plight helps to lessen the isolation. I will always listen and I have no doubt all friends on the forum will too. Happy and healing thoughts to you dyedye, and no more loneliness, share with others who genuinely understand and care. S x


Hello, dyedye,

Just to say that I am thinking of you. All the helpful advice has been written above so I can't add anything to it. However try to get some professional help. Don't struggle on your own. It is too big a task when you are feeling so very depressed. I have had suicidal periods in my life as I have suffered with anxiety and depression for many, many years. Like you, on many occasions, I have just simply wished I were dead (and that was before Fibromyalgia was diagnosed) but I am still here aged nearly 59 and, in spite of all the pain and other debilitating symptoms, I am very glad that I am. You will get through this awful time and we are all here to try to support you and encourage you. Just remember we all care about you and you are a worthwhile person no matter how your family might make you feel.

Please try to be strong and ask for help from one of the organisations mentioned above or from your GP.

Take care, Loving thoughts are with you and I send you a big warm hug. Saskia XX


Firstly hun you need to remind the DWP that they need to refer back as on 21st June 2011 the government said that fibromyalgia IS recognised as a potentially disabling illness. It is just that no one is telling anyone else about it hence we suffer for it.

Secondly you have tried to compromise by providing your husband with all the relevant information. Now either he does not understand any of it or he chooses to ignore it. Of which I am not sure, I cannot judge as I do not know you. But one thing you say is 'he won't help and he won't leave. That leads me to wondering if you have deemed your marriage to have failed and in your heart you are thinking you would be better off on your own. In some cases people have felt they would be better alone and have proved to be happier alone.

If people choose not to understand then they are the ignorant ones and making you feel this way is just so unfair. I for one will not stand for it. If anyone asks me I tell them it is a chemical imbalance in the brain. If they cannot understand that then it is tough on them. You know how you feel and you know what you have given up due to FMS. If you feel you can give up your husband too then that is up to you. I am not going to tell you to get shut as this would not be fair of me. This is your life we are talking about. But you will get some good advice here, some wonderful members always willing to listen and offer support. Take baby steps hunni, it is all we can do xxxxxx


Hello Dyedye

Just checking in before I finish here for the night to check you are ok.

I hope you realise after reading all the comments on this thread how much people care about you here and that we are all concerned for you and want to do our best to try to help you.

We all understand how you are feeling, we have all felt low at some point or other.

Take one step at a time, don't look too far ahead, and please know that we are all here for you to help you along the way.

I will pop back to see if you've popped in and to see how you are.

(((hug))) xxx



Hello Dyedye, how are you today?! Please pop in if you can to let us know how you are today. We hope you are feeling a bit better and we want you to know how much we care and that intend to help and support you as much as we can.

Hope to hear from you soon.

Take care and take little steps, one day at a time, this will help you.

(((hug))) xxx



Hello, dyedye,

Like Libs I am worried about you. Please just let us know how you are feeling today and if you have been able to get some help.

We all care about you.

Thinking of you. Love and hugs Saskia.


Hello dyedye. Just wanted to drop you a line and tell you I too have been hoping you'd leave a post today. I hope things seem less bleak for you today. I also hope you recieve the caring thoughts sent to you. lnl S x (p.s. I will drop by tomorrow too x)


Still thinking of you dyedye. Hope you leave a post soon, S x


darling, i've only just seen your post...all i can say is i can fully understand that you feel this way, the isolation, lack of understanding and lack of support is a bad combination, we are all here for you, keep posting

PLEASE INBOX ME ABOUT YOUR BENEFITS i can direct you to help

love xxxxx


Dear Dyedye04, how are things for you now? I was very sad to read how you were feeling and went on to read the replies. I am pleased to see how much they tried to support you, but how are things for you now? I was going to add my support, but I don't know what support you now need. I do hope things improved for you.


Hi dyedye04. Please stay strong I know how you feel my ex partner was the same as yours he thought I was lazy and faking it some times I couldn't walk and I had to crawl he use to take the piss out of me don't think you are alone with your appeal try not to worry I had mine yesterday and I won but its taken me two years but they finally accepted what I had got drs theses days are recognising the illness but please if you are desperately low phone the Samaritans and talk to them I've been as low as you feel know there's plenty of good listeners on here as well stay strong ok


You're kind comments are very good and kind this post originated a year ago

.thank you


I'm sorry that you are in such pain, I know when I feel really bad I tend to snap at my husband and he gets fed up, but what you'r having to put up with sounds awful. Have you anyone that you can talk to or maybe if you can tell your GP about it all he will be able to help you with a councillor, maybe both you and your partner need to talk with someone outside all the stress, but able to help you professionally? Please don't sit back and let the problems make your health worse. With best wishes Sue


i hope you are feeling much better, some great advice on here, i think to some degree we have all felt like this, comparing yourself to your old life is what maybe making you feel so low, again i do it all the time, i used to run a a mile in under 7 mins now it literally hurts to do that journey by car, take good care x



I am new to this site and i have just read your post. I hope you have not succumb to your thoughts of dying and your boyfriend is no longer your boyfriend, as he seemed to not care about you and in no way are you lazy. Having fibro is a terrible disease and can be very debilitating in what we want to do in our every day life. I to understand that it is hard for family and friends to know what we are going through, but i say if they no longer need you to look after them ie cook, clean etc. do not stress yourself as stress is no good with fibro. Go back to your doctor with a list of all your symptoms and how they affect you and see if there is any kind of support he or she can give you and i hope your appeal went well. I do feel for you dyedye04 and I trully hope you are still alive. lol mindful579 x


I know it's not easy and I have every sympathy with you. My 'friends' just seemed to gradually disappear as well as lack of understanding from family. I made the decision to go it alone and as soon as I only had myself to think of, I could sit, re-evaluate and re-organise. I felt so much better once I had taken control of my own life. Yes I still have Fibro, but I rarely feel depressed now that I can organise my days without having to consider anyone else.

I realise that this is not an easy solution for most people, but unfortunately you may have to accept that your family and partner will never change the situation so you will have to. You say you are letting your family down, how? This awful condition is letting you down, you should never feel guilty. Could you take yourself off somewhere and quietly think all your options through? Nobody has all the answers and I'm only sharing my experiences. Good luck and try to stay positive. X.


Sorry you feel this way hun, had similar situation but I chose to leave him, as for the dhss find your local welfare rights bureau for help and advice. This condition is recognised by the dhss. What ever is oweing to u you will get it back.

Hang on in there hun, you have managed your own business, your strong enough to manage this too.

There is a light at the end of the tunnel for you.

It's a contrast of balancing your life again only then will you regain some of your life back.


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