Fed up

I've been diagnosed with fibromyalgia , for years I knew there was something wrong but it was always put down to depression and IBS , I go to the pain clinic which I don't find helps , I go to Physio which leaves me in absolute agony for two weeks to the point of not even being able to walk up my stairs . And I see rheumatology and a physciatrist !

The doctors won't put pain meds apart from my amitriptaline and mebeverine on repeat and all they will prescribe is codeiene phosphate . So I'm having to go backwards and forwards to get meds that don't even touch my pain.

I've had to cut my work hours down , ironically I'm a carer and I love my job but I physically can't do my full 50 hours a week and I've gone to 35 but this doesn't even cover my bills I'm now in debt

My partner and my family don't understand at all I'm always being had a go at for moaning , or always having something wrong or being miserable when I try so so SO hard to be positive ! I run my home get stuck doing all my housework whilst listening to other people's problems cook meals and work 630am untill 830pm as well as running a buisness from home , doing my nvqs and organising a charity event . I even had to physically show my family my diagnosis letter as I'm apparently to young to have this .

I literally have no one and feel so alone I try my hardest but everything is being taken out of me ! I can't get to sleep at night because everything aches so much and I listen to snoring ! I got to sleep at 4am yesterday slept till 1030am then slept from 1230-6.30pm !! Today is my day off and it's wasted , no one ever invites me anywhere or takes me out and I'm just so so so fed up and can't cope with this anymore

I have just finished stress management with the wellbeing service and it was rubbish really didn't help me whatsoever . I am on 100mg of sertraline for depression and have high indications for an anxiety disorder ... I feel so fed up even my employer doesn't seem to care even though I want to work I love my job . I just can't cope anymore ๐Ÿ˜ข I just want someone to listen and support me

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  • Hi, I'm so sorry you are having such an incredibly hard time, I really feel for you.

    What strikes me most is how desperate you sound, and trust me, I've been there. I wish I could give you a hug!

    Youve got a huge amount on your plate, and from the sounds of it inadequate support. Im trying to think of ways you can reduce the pressure on you. Perhaps my first step would be to go to a sympathetic GP at a double appointment, and tell them you are desperate and not coping. Perhaps say that you appreciate you were referred to physio and pain clinic but they are not helping you, and if anything making you worse. Tell the GP you are in severe pain every day, and your meds are not adequate. Tell her you are not sleeping. Don't hold back. Better to burst into tears and cry for 20 minutes than miss an opportunity for support. It's their job to help you.

    You need to get support from as many places as possible. Have you been to CAB recently? They might be able to advise you on what you can do about your hours and applying for benefits. It sounds to me you need to be working part time at the most, although I know that might not be possible. It's a tough situation.

    Something you can do though I think is try to delegate as many tasks as you can. Sounds like you have done what you can to get your family to understand you. Try to get help with housework and stuff round the house? Would they do that if you explained you physically cannot do it and are getting very ill? could the people you cook for make or reheat their own meals?

    Another thing you can do is drop non essential tasks. You're probably like me in that you want to do stuff and help people all the time, but for now I think you really need to focus on YOU. Maybe don't do charity work for a while? You can always go back to it. And remember emotional work is still work, so if people start offloading their problems on you as usual, then you need to change the subject or in some way make it clear that you cannot deal with their problem. Sounds harsh but you've got your own problems, and you need to look after your emotional health.

    You need real support that actually helps you. I also found pain clinic useless btw. And stress management course is going to be useless if you've just got too much on your plate to start with. You don't need to manage your stress at the moment, you need to get rid of it. And it's no wonder you are anxious- anyone would be in your situation.

    I hope my advice wasn't too simplistic.

    I think there is a message function on this site (I'm fairly new) so please message me if you would like to.

    Love and hugs, hedgehog xxx

    Ps. Also just little thing but try to get your meds delivered monthly by your chemist just to save you a job.


  • Oh god my pharmacy are meant to manage my scripts and they can't even do that every month I have to go backwards and forwards because someone along the line has messed up ๐Ÿ™ˆ I think it's just because it's me nothing is ever straightforward ๐Ÿ˜‚ Xxx

  • Hello Yaslou93,

    I think the first thing you need to hear is that you ARE DOING too much. Fibro affects all of us differently, some more than others. But you are trying to do so much that I am not suprised at all at how you are feeling. In fact the only thing that does suprise me, is that you are not feeling even worse than you are.

    There are a great many on this group who will help you and support you if you will let them. I know they have kept me going for a while. If you want to click on my name and go to 'profile', then look for the first post I made, you will see how much I owe these wonderful people on here...

    Sadly it is quite common for us to have families who don't understand, or sometimes don't even want to understand. They have said astoundingly cruel and hurtful things to us sometimes. Perhaps they were trying to shock us into 'trying harder' or something, we often never really know why they say these things. Please understand, it can a shock for loved ones to suddenly have to realise you are not well and sometimes they do say things like 'you are too young' because they don't want you to be ill, they want their wife/mother/sister back the way she was! They might not be intending to be hurtful, but that can push you into trying too hard, which makes fibro worse.

    There are some very good sheets available that you can print out and they will help explain to your family what fibro really is . There are others on the group who know a great deal more than me about this though. They will hopefully be able to guide you to the best info for family members, as well as yourself.

    Fibro is often misdiagnosed unfortunately. Getting a diagnosis of it is often a nasty shock as well. You should give yourself credit for all that you are doing, it seems quite remarkable to me.

    You have my sympathy and I wish you well.


  • Thank you terry I am so glad I've found this group , it's felt so good just to get it off my chest how I'm feeling and not get the usual " stop moaning" I am so greatful for everyone's replies x

  • You will be amazed at how good this group is, they amaze me every single day, even though supporting me has to be an incredible drain on them, as they all have their own problems as well.

    My best wishes,


  • Hi Yaslou93

    Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:


    I am so genuinely sorry to read of how you are suffering and struggling and feeling emotionally, and I think that somebody who does not have Fibro would struggle to do everything that you do? You are working such long hours and then having the burden of responsibility for so much more? I was wondering if there was any way that you could delegate some of your domestic chores to other family members to help you out?

    On the FMA UK website there are some printable pages about Fibro and it may be useful to print these off and give them to friends and family to give them an idea of how you feel and what you are going through? I want to sincerely wish you all the best of luck my friend and please take care of yourself.

    All my hopes and dreams for you


  • Thank you ken I will look into printing them , it's horrid how I have to justify my illness to people , I would never dream of making someone justify themselves to me, it hurts not to be believed .. I will check out the print outs thank you x

  • x :)

  • It sounds like you are taking a lot on. NVQ's, working long hours, organising charity events etc. I'd suggest pacing and asking the family to help do things like the house work etc.

    By pain medication it you mean opioids of narcotics then they often aren't helpful for people with fibromyalgia. If your date of birth is in your username, you would be on masses of morphine by the time your 30. Not your fault at all but tolerance to the analgesic effect.

    I'm surprised you are on sertraline when there are much better medications for fibromyalgia. SSRIs aren't recommended.

    Obviously no-one can make recommendations, but have you tried any of the anticonvulsants like pregabalin or gabapentin ?

    If you see a psychiatrist maybe they think it will worsen things, these meds will have an affect on neurotransmitters in the brain.

    If codeine doesn't help I'm sure your GP would be willing to help you stop them by reducing them over a few weeks. There is no point taking something if it doesn't help !

    Exercise for people with fibromyalgia is really important. But it is so important to increase gradually. Even if it is just a 5 minute walk - this will soon turn into 10 minutes 20 mins 30 mins etc. There is lots of evidence for exercise for fibromyalgia. Unfortunately people think a pill will just help and for most they don't or do very little.

    Hydrotherapy and acupuncture are perhaps two other things you could try ? Also maybe with time things will help. I think just making some of the suggestions in my post will help.

  • I take the sertraline for depression - ironically the only thing I'm depressed about is lack of support and because at the time no one took how I felt pain wise seriously just told me I was depressed , I have since changed GPS and they seem a bit better the amitriptaline , and codiene phosphate are my pain releif ... I don't like taking tablets and I don't expect a quick fix I would just like a day of releif at least ... I only take my codeine if I really really need to (it upsets my ibs). The lesser of two evils and I really have needed the pain releif this. Week I have an appointment on Monday about my painkillers and I think I'm pretty much going to beg for something else ,how do I go about hydrotherapy or acupuncture ? X

  • But there are better antidepressants which work for both the fibromyalgia and the underlying depression. I'm just surprised they keep you on sertraline.

    Ask your GP for a referral. Often they refer to a physio who can assess and organise either hydrotherapy or acupuncture.

    When you see your GP there is no harm in conveying how bad the pain is etc, but definitely ask for things other than just medication. I know you just want relief, but you don't want to be wrongly labelled as drug seeking If you end up seeing the wrong GP or if he got the wrong way out of bed !

  • I'm already refered via the NHS to Physio , fibro group , wellbeing service , pain management , rheumatology I can't see how they can say I'm trying to get drugs when I've only ever asked for them twice , I'm trying to do everything I possibly can to get myself better but it just isn't helping me x

  • I think you doing too much and should be proud of your achievements. I have hidden my fibromyalgia for years until symptoms became noticeable and pain, depression. I have lost a big chunk of money in a business venture in Canary Island. But being there helped me get stronger. I know it hard to face what you got but like any chronic illness it does overcome you and leave you feeling defeated. I do not think you personally from what read about you should think your efforts and kind things you have Done have gone unnoticed. You need to find a doctor who on your side. So if is the problem go find a better doctor who work with you to find best drug treatment that works for you. Do you take opioids. I do and doctors did before make me feel bad asking more pain relief. I take tramadol and this works to bring relief from pain.

  • This is why I changed gp surgerys I had to beg them for painkillers I got given dihydrocodeine (I think that's what it's called ) there attitudes towards me where atrocious the new GP surgery appears a bit better they upped my amitriptaline and gave me codeine by reading my Physio report which said I cried because of the pain he was quite sympathetic actually I didn't even have to ask he just gave me them I've taken diazepam before and that helped me relax and stopped the pins and needles and spasms but I'm scared to ask for it again ๐Ÿ™ˆ X

  • Many doctors do treat fibro patients bad. Somebody needs to organise a protest march. When you have responsibilities, work, family. And affects your life so much. Until I got a pleasant doctor felt so upset just going to doctors.

  • I know the feeling !! I have to see them today about meds & I also have Physio tomorrow !! I could cry about it !

    Really hope you've found a practitioner who is sympathetic now xx

  • Thank you. I never talked to friends with fibro before.

  • Well you can speak to me anytime โ˜บ๏ธ

  • I am so sorry for you you are doing far to much, I find pain increases when I over do it, I have learnt to pace myself, I have started taking magnesium 2 or 3 at night I can feel the difference , my sister took her own life ln June she could not cope and had know hope, put yourself first find new doc make people help you, wish I had magic wand, please take care. Linda

  • Oh Linda that is heartbreaking I am so deeply sorry for your loss, magnesium ? Are those available without prescription I will have to have a look xxx

  • I haven't heard of Joshua tucker , everyone told me its gotta get worse before it gets better , which to me seems plain ignorant as my goodness it didn't half flare up so bad !! Physio appears to be one size fits all approach x

  • I don't drive and had to walk to my calls for six hours Friday I think that's set it off its nhs Physio I don't know how to go about hydrotherapy someone else mentioned that it was good , for pain I take amitriptaline and codeine x

  • Hi again Yaslou93.

    I would be inclined to discuss this matter with your GP and / or physio prior to stopping any treatments or therapies my friend. Treatment should not really be stopped abruptly as it could cause you greater pain if you suddenly stop using the muscles that you have used for your exercises. If your physio has been so poor you could always write a letter of complaint to their relevant head of department?

    Fibro physio tends to be gentle, slow exercises that are designed to help keep you subtle and moving. They should not really be something that increases over all pain levels.

    So please discuss the matter with your medical professionals to ascertain what may be best for you? I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • Thank you ken, to be honest my Physio appointments are so few and far between I couldn't see it making much difference , I have an appointment tomorrow so I will mention to them then x

  • Good luck for tomorrow my friend x :)

  • Thank you will let you all know how I get on x

  • :)

  • I was diagnosed with Fibromyalgia 15 years ago, I get nothing for it, I have arthritis, and constant spine pain, I suppose I'm lucky I have a great husband that does a lot, get put on the proper medication, I take dihydricodeine the fast working ones, 30mg per tablet, I take 8 in a day, and I take venlafaxine nerve tablets one in the morning one in the afternoon, and a Mirtazapine 30mg to sleep at night, they're the only tablet that keeps me calm, and at least you sleep you're still up and down to my commode, but at least I get a sleep, it's time you gave up working and looked after yourself, go on pip, if you have a good doctor and help by you're husband , the pain you're going through you shouldn't be working apply for pip phone them , they're numbers on the Internet, you just type in personal independent payment phone number, they're open on Monday, 8.30am you can't keep on living like that you will burn yourself out, get more help lovey hope that helpsxxxxxx

  • I will have a look into that , thank you lovely .. I heard it's really hard for FM patients to claim PIP & other benefits ( benefits is an ironic name) they should totally change the name to necessarys ๐Ÿ˜‚ It's not a benefit to have a disability , I also have spinal damage which I believe I got due to a bad car accident I was involved in many years ago as a kid ... No scan has been done on my back until recently and my spine is crumbling ... I'm glad everyone is telling me about their medication I'm meeting with the GP Today to discuss meds at least j have more idea of what I may need ....

    I've heard lyrica is meant to be good for FM? I have no clue what it is any ideas ?? Xx

  • Hello from Nurse Gladys Emanuel (open all hours) you really have got a busy life there and far too much of it for a fibro sufferer-CUT DOWN! as far as topping up your income look on the FMAUK websight there is a financial section that will guide you thru getting help. it will be long winded but persevere with it.. As for home life-how many people in your home are disabled? how many are over 16 years of age? how much do they help you? you are a carer who now needs a carer too. stay with our forum people will offer help daily..

  • No one is disabled apart from me my partner goes and plays football which then leaves him in pain from sprains etc I don't have any children although it feels like I do as I'm constantly cleaning , this weekend has been awful I've pretty much been bed bound I will have a look at the finance bit I really need to do something ๐Ÿ˜ข Why is it all so hard x

  • Thank you so much for your replies everyone I really appreciate it I am sat here in tears now . I live with my partner but he doesn't get it at all no matter how much I explain to him , after six years together and hearing nothing about it the response about my diagnosis was "my nans got that" all of his family think I'm lazy !! There is no way I could ask my family to help around my home they would tell me where to go. I honestly feel like I could shut my eyes and just sleep forever . I just get moaned at because I don't like going to places with loads of people because the noise my OH is now annoyed at me because I don't want to go to his families BBQ but I'm really not feeling good today , I can't be dealing with the comments about my health and the judgement , or the smells and the amount of people that's going to be there ,im also vegetarian and it sounds selfish but why would I want to go to a bbq๐Ÿ˜‚ As for my working hours I was working 210 a month ! I've now cut down to 35 a week and it doesn't even cover my bills , I have to continue doing my nvq or I have to pay ยฃ150 for it on top of this I'm learning to drive which is totally rinsing my cash . I'm so stuck about what to do I've looked into PIP but I've seen how hard it is for FM Sufferers to get it but the way I feel at the moment I could quite easily put myself in the looney bin just for a break ๐Ÿ˜‚ My charity event means the world to me , I am a carer and I've organised a charity pamper evening in aid of Alzheimer's I have quite a few people going so I can't cancel it ๐Ÿ˜ข But it's in September , I won't take anything extra on after that . I'm so glad someone mentioned about the Physio I literally only had to do light floor stretches but OMG it was literally the worst pain ever , I felt like I had been electrocuted then hit by a bus whilst running a mArAthon , safe to say I'm not to keen to return, the wellbeing service and pain management is an absolute joke it's like a one size fits all approach ...

    I'm being threatened with court as I'm behind on my council tax bills AND I'm waiting on my next ENT appointment the hospital like to muck me about I've had lumps in my neck collar bone and jaw since last October I was due to have them removed last month and biopsied the surgeon cancelled it I got sent for a scan which revealed lymph nodes and I've been told because is not an infection it could be a malignancy !! It's one thing after another and I'm sick of it ! I'm mentally drained I literally don't know how much more I can cope with ..

    I am so sorry for the long messages everyone I just need to get it all out xxxx

  • No just how you feel had the condition for years, though only recently been diagnosed. Every body use to think i was just complaining and been miserable. They are more understanding now, but don't really understand the illness, neither do I really, kathy

  • That's the same as me for the last ten years I've been complaining I wasn't right it always got put down to ibs , but I never met anyone who suffered with ibs untill me , then I mentioned my symptoms to someone and she told me to ask about fibro , I then got put in hospital because the symptoms became so severe and after multiple referrals to specialists they finally diagnosed me, I can't understand it either it's so hard to explain how bad it is when I'm asked x

  • Try to look on the positive side, but it isn't easy, also have arthritis as well so some times not sure what's what

  • I sure do feel you pain...Mentally, physically, socially, medically etc.

    Don' you ask yourself; WHY ME?????

    I wonder when will my breaking point be...

    I am to go to a job interview today and I am so excited!! It is "the" job I have held out for. Due to the fact I had to give up my hairdesigning career, I am sure you understand why..ugh...BUT...I am so afraid I cannot perform at this new position.plus..I know I could knock this job out of the park.....

    I understand TOTALLY what you are saying when it comes to ALL of the people around you not "getting it" ...

    There is nothing worse than all of the pain, depression and EVERYTHING that comes along with Fibro and know one believing you...

    Don't you get sick and tired of everyone telling what it is that YOU need to do with yourself to make you feel better.

    I understand the statistics on Fibromyalgia suicides...

  • Oh lovey !! Good luck with your interview what is it for ?? I feel like I will have to give my job up soon it's way too demanding and it was my dream to eventually become a nurse !!

    I do sometimes think why me , but I guess if we weren't strong enough to deal with it we wouldn't have it , maybe I was a criminal in a past life and this is my karma ๐Ÿ˜‚

    I do have many brick wall moments but I can't find one hard enough to hit my head on haha .

    I couldn't care less about random people and what they think but what hurts me is my family think I'm making it up , I work full time as a carer and live with my partner and run a house as well as six billion other things I do & because I'm only 23 they say I'm not old enough to have this ... I can assure them I do have it and I bloody feel it it's like an 80 year old is imprisoned in my body and is trying to break out lol I've resorted to sharing photos of my deterioration , my diagnosis letters , my appointment letters you name it - but I'm apparently making it up ..

    My partner is no support to me as he thinks it's laziness and all I want to do is lay around... Bare in mind since the age of 15 I've worked full time and have now cut from 210 hours to 160 - but I'm lazy !!

    It sucks to be us ! I'm so so glad I found this forum as yesterday was my first day and after reading and receiving so many messages I'm kind of feeling englightened and empowered today by everyone's support and kind words and understanding


    You can do it !!! Xxx

  • So I'm now back from doctors & they prescribed me zapain and baclofen so fingers crossed that gives me some releif on top of my amitriptaline !! Hope all you guys are having at least a mild pain or pain free day today x

  • I have been on it all...

    the only thing that helps take the the pain off the surace for me is vicoprfen, flexril, gabapintin(Lyrica) meripexole (rls)

    vit B12, Magnessium....Milk thisle for liver ...you darn right I drink... smoke too...

    Sadly it is the only thing I look forward to well, not true, I do love a pool for for work out and to put out the fire...lol

    Good luck with your new meds..I hope they work for you.

    I know we are all different and we all have different symptoms with the "F" word...What works for some doesn't neccessarily work for others...

    I am sending you good JUJU....

  • Good juju ๐Ÿ˜‚ Thank you , I think I have a high tolerance for meds I used to take gabapentin but they didn't do anything for me and they made me come off the Ami when they prescribed those so my migraines come back !! I think we have to smoke to keep our sanity , I am partial to a glass of moscato but only if I have a week off although I find since being on the amitriptaline I don't get as many hang overs ๐Ÿ˜‚ Sending you good juju back x

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