Advice needed

I have recently been diagnosed with FMS after 10 years of symptoms and constantly been ignored or messed about by GPs or NHS professionals. It took a private consultation at spire hospital for the NHS doctors to sit down and listen to me again after he said 'hang on its not gastroenterology based, you've pain in all areas of the body...... it sounds more nerve based.' Then within weeks fibro was diagnosed. I am still awaiting full assistance on the pain front as what i am on now oramorph, citalopram are not working. I also have to juggle hypermobility, ibs and coeliac disease so my life is a jumble. Depression is swamping me and even the 'emergency' self referral number my gp gave me reckoned i was a risk but said i should go to the samaritans as they have a year waiting list! I wish i'm dreaming and wake up soon as i cant take much more nonsense. I've tried crying and shouting at doctors and verged on begging them to help me cope. If i can be in less pain i can cope with picking myself back up. I dont know what else to do. I cant sleep as of the nightmares i get with depression even when my pain lets me sleep so the fibro fog i keep getting is driving me around the bend. My family dont understand fms (and dont seem to be trying) and keep thinking i can just pull myself out of it or that i'm acting forgetful to annoy them. I am trying to work (am a beauty and relaxation ironic) but i have not the energy or strength for half of what i was capable of. I am angry and sad all of the time, feeling abandoned by everyone who in an ideal world would stand by me. Is there anything I havent done or said that might make a difference?

Thanks for listening to my rant


27 Replies

  • Hi


    Really sorry you are going through such an awful time.

    I'm afraid it's often part and parcel of chronic illness that our nearest and dearest can't or won't acccept we are ill. Often they can hurt us the most.

    I would maybe ask a ref to a pain specialist to look at your meds.


  • Thanks Aurorasparkle, too true unfortunately in my experience. I have asked more times than i can remember since i found out there is such a thing but the excuses range from well they need to know what they are dealing with pain wise to best suit you to we will send you once the MRI is back. xx

  • Hi

    I would impress on them your pain is not being controlled effectively and it is affecting your day to day functioning.

    I am hyper mobile too and it might be worth if it and can afford it to have a few sessions with a private physio to identify and relieve any problems you might have.

    I went on Monday to a physio about my scarum pain and have been told my pelvis is unstable due to a number of factors Endometrosis, and hypermobility. my understanding is that you can build up trigger points which can lead to more pain. I am now got some lovely blue kinsesio tape on my pelvis to help support it. I also got some dry needling for the first time on my sacrum area which has helped.

    Hope this

  • Thanks, I'll keep trying. My hypermobility hasnt been so bad (touch wood) recently. Only dislocated my shoulder as i blacked out and fell on it!

    Thank you again xx

  • Hi SallyE15

    I have read your post with so much pain in my heart for the way that you have, and still are, struggling and suffering as a result of your Fibro. I genuinely and sincerely hope that you can find the answers that you so desperately desire and deserve.

    I have pasted you a link below for a print off fact sheet that explains Fibro simply that you could give to family and friends in the hope that they will show you more understanding of your illness:

    FibroAction Fact Sheet:


    I have also pasted you a link to our mother site, FibroAction which hosts loads of useful Fibro information:

    FibroAction Website:

    I want to genuinely wish you all the best of luck and I sincerely hope that you can ascertain some semblance of your life back once more.

    All my hopes and dreams for you


  • Thank you Ken, i'll show them the link. Everytime i pass them info on fms they read it but as its not a simple 'here try this med or after a simple op fix' they seem to not believe in it.

    Thank you again


  • Hello Sally, I'm unusually awake at midnight and just read your moving message and feel very much for you with this whole mix of all over the body nerve pain, sleeplessness, the depression and feelings you experience as well as hyper mobility, ins and coeliac disease. First I want to express my every empathy for your natural frustration, anger and sadness.

    Dear Sally, It can't have been easy enduring such a huge long wait. I'll come to your cry to be heard a bit more in a moment, as that's very important.

    Next...I know its been an arduous journey, all these years to get a diagnosis. I wish I could turn the clocks back for you to experience something different...I wish I could comfort you...and I realise quite a few people in this community share that experience. I wish it was otherwise for each and every one of us. Yet the diagnosis is a real milestone, so good you have that at long last.

    Now begins a new stage in your journey, which involves a lot of things, including what you need to help you cope with all you are bearing, how you will communicate your needs to others (whether family, friends, work and other health professionals).

    So hard though it id, let's be glad that you have a diagnosis now, and can begin to explore more how to cope and live with all the mix of your conditions.

    This will include feeling better supported and being more empathised-with and understood by at least some others, right?

    I learn from reading other posts here on our community, that quite often other family members or partners may need guidance on how to help understand what you are experiencing and what you most need from them.

    You would probably think they'd be the first to understand...Sometimes we find that we need to educate those close to us on what we need...and I know it takes effort and energy to do that. I know in my own family, some family members struggle to 'cope' with how things are for me, perhaps because they aren't quite ready to accept that the condition is very real, every day...and creates different life choices from the ones I used to make. It can take time for them to adjust.

    I know this is rather long post - are you still with me? Because I'm feeling that perhaps one of the most important things for you right mow is to feel really heard and understood and cared-for. And you are giving your energy to your beauty clients...I wonder if there is anyone you can go to, to nurture you?

    And whether you feel some kind of counselling or similar, might help to express your feelings and be better supported?

    There's lots more I or others could say, Sally. I want you to know you are in the right place to reach out for support.

    This is a helpful community and whilst each person is absolutely unique, plenty of people here would understand something of what you are going-through from their own experience.

    Above all, I wish you feeling a bit more support around you, at least here, so you can learn where to find more resources and ideas to help you.

    Does that make some sense to you, Sally? Does that help you a little as a first 'go'I wonder what you think and feel?

    I'm going back to sleep mow, but I'll check back here in the next 2 days to see how you are doing.

    My kindest wishes

    Rock Rose :-)

    find plen

  • HiSally

    So sorry to hear you are feeling so unwell.

    I understand how troubling this illness can be .

    I also understand how first hand that family and loved ones sometimes find it hard to understand the illness or even want too.

    I just had to leave my marriage of 23yrs because he wasn't willing to see it through with me ..sad but true.

    In the last month I had to pack up leave my home of 23yrs and move on ..thank goodness I had some close friends to help and of course this site with all my fibro family.. That's what I like to call everyone.

    Everyone here understands and are so supportive.

    I certainly hope you find all the answers you need and are able to get some pain relief to heal your pain.

    Its so easy to get depressed and have no get up and go..after all with the pain we suffer its very depressing.

    Just remember we're all here to support one another and I'm on here quite often so if you feel the need to talk please send me a message anytime.

    There are a lot of fibro friends and administrators that have great info sites.

    So welcome aboard ..hope you have a good nights rest .

    Gentle hugs.



  • Thanks! Sorry to hear you've had such a struggle. As usual i dont sleep much from the pain and bloody nightmares i get. Hope you have a good day X

  • Hi sally sorry for what your going through both medically and family . As a sufferer myself i know it takes a long time to get right treatment . I see your on citilopram which i know is for depression and will not treat fms. I know with nhs doctors anybody suffering depression they dont have the same input to a patient which is very unfair as experience myself. Im now on 9x300mg daily of gabapenten and find a great difference . Please hang in there and its not the problem its how you solve it . Ps cry and you cry alone laugh and the world laughs with you .

  • I've heard numerous times how successful gabapentin can be but everytime i ask for them to let me try it, there's always the same 'soon' or 'once we've done .....' Its so annoying. Surely the doctors are supposed to help patients not leave them in agony.

  • Hi all , I like the thought of you all being family as my so s defiantly don't get me or this darn illness . What's everyone doing today ? , I've got o/t coming , should be interesting because I used to work in a multidisciplinary team !!!

  • Hi Sally,

    I am really sorry to hear what is happening to you. I have been diagnosed after almost 6 years. Just before the diagnose I was feeling really down. But as soon as I took Amitriptyline, every thing changed. And I am feeling much better now. I can now go to the gym (even though I cannot do what I was doing before) I can also cook healthy meals (before I did not had the strength to do so)I hope that you will also find a medicine that works for you. It worked from the 1st day for me. Try to see your GP and have something else prescribed.

    If you are living in London there is a community counselling service

    This might help you in the meantime.

    Take care

  • At doctors again tomorrow so will take all your advice and see what happens. I am just desperate to feel a bit like my old self again. A normal nights sleep, having motivation to go to the cinema or just feel happier. Seems so far away xx

  • hi Sally sorry your going through a bad time of it, just keeping going to your Drs until you are heard, and family will come round to it ok Hun.

    Take care Hun xxxx

  • Thank you! I will try to keep chasing them. You too xx

  • Hi Sally,

    Have you tried this group?

  • Hi Sally,

    Have you mentioned to your doctor that the Citalopram doesn't work for you? I found it completely useless as well and found oramorph really tricky as it had a terrible impact on my IBS.

    Although I'm still on morphine, I now have it in patches which is great for when I have a really bad flare and my back seizes up.

    Please, please go back to your GP - do you need someone to go with you? Where do you live? There might be a forum member who's not too far from you and would be willing to attend the appointment with you to make sure you get all the support and the right meds you need.

    It's great that you've reached out - it means you're still hoping things will change so please let us know what we can do to help - apart from supporting you online.

    Wishing you the very best and hoping to hear back from you as soon as possible.

  • Hi Reykua, I cannot recall the number of times i've reiterated the medications are not working for me, its always the same useless excuses why they cant change them yet or won't. I live in Huddersfield and will be back at doctors tomorrow. I wish i could laugh at the prospect at what they might come up with next.

    I hate my life right now, what i've become. I loved my acting, music and bridal makeup work, now its just waking up and getting out of the house being my biggest success. xx

  • Oh I really wish I lived nearer to you. I live in London but would have loved to accompany you to your appointment and give them a piece of my mind! (at least, what's left of it).

    Well done for waking up and getting out - at least that's more than some people I know and I love that you're such a creative person - all my friends are artists or artistes - my daughter's godmother used to sing with a group called Working Week.

    The difficult thing for most creative people is that they are much more prone to depression but the positive thing about these same people is that they usually direct their feelings into their creativity - sometimes creating their best work.

    It took three years of fighting with my doctors to prove that I had a problem with my back and although I'm terrified of the upcoming op, I'm glad I know what's wrong and what I have to do to correct it. You're right to be angry - use that anger, channel it positively, put things in writing and calmly state your case and what you want done about it.

    You've probably told already told your doctor - 'it's not working', instead you could try saying something like 'I don't think this medication is working because... eg. when I take it as directed ....such and such happens, there is no change or not much change in my level of pain, if my pain was 10 it only goes down to 9 and I need it to get down to 4 to allow me to function effectively, I sometimes have to take two or three different ones at the same time to have the desired effect - this one always scares them but is quite common. At my worst I was taking Ibruprofen, Paracetamol and codeine at the same time. Sometimes speaking their language makes all the difference to them actually 'hearing' you - as my friend says.

    Wishing you all the very best. I love your profile picture. Keep smiling and don't give up. Your's is a righteous anger so don't back down.

  • Thanks reykua,

    I hate being so down, my music was always so jazz and broadway style but is turning so dark and miserable. I cant dance/act or even just be an extra right now as even a few hours in costume would be far too much! You're right though, the sadness helped me when a friends grandfather recently passed and i helped with the music.

    I'm glad you've got your op and everything seems to be going in the right direction. If you had no fears of the op, something would happen. Its always that way. Nerves are natural but good.

    I hate being angry, i know i can call it justified but i am not an angry person. I was always the sarcastic, hyper and unconfrontational person.

    Believe me i speak dr language, i am trained as a paedatric nurse and have worked with doctors via a skin clinic for years, its why i get so frustrated, like these doctors wouldnt be sitting there so calmly if it was them in the patients seat and being ignored. My colleagues even coach me on exactly what to ask and suggest but even with them writing to my gp its got me nowhere.

    Thanks on the photo, it was at my best pal (near enough sisters) wedding last year, a week before my last big hospital admission, much happier times. I'm now going to be surrogate auntie to her coming little one. I want to get better to be able to have all that (marriage, kids) myself and not be a victim to this damn mess. The light still seems a very far way down the tunnel. good luck with the op xx

  • My gp is part useless, part caring and its so frustrating! She seems to be trying to help but not reading my notes properly or seeming to just want to jump in and say 'right you're struggling this is what i'll do while the rest of the pathetically slow nhs sorts you out'. I went in again to gp's this afternoon. She has discovered 3 months after being referred by dewsbury hospital for an mri, no appointment has been made. My referral to rheumatology and pain clinic were all waiting on this mri to happen. So you can imagine my distress! She then read my notes after i explained my pain is not being touched by the treatment currently available. She read i'd collapsed several times last year and was being seen by the neurology fit team and that i was discharged without any anticonvulsants etc as it was merely a body response to the stress, pain..... She is now considering over the next few days what other pain relief i could try as gabapentin may increase my chance of epileptic fits, except i do not have epilepsy so this shouldnt even be in the equation!!! Despite repeating what Dr dafalla said a dozen times, she still wants time to evaluate. So all she did was increase my 30mg of citalopram to 40mg and leave me on oramorph! She has forwarded me to rheumatology for hypermobility and FMS but its hardly a step forwards as the appointment isnt til 10th July! She thinks they will send me to CBT or similar and the pain clinic! Argh!! The only positive thing coming out of today is she 'knows the pain is real' and 'something needs to be done to sort it'. She kept mentioning throughout she could pass me to pain clinic but when i came back to it, she said the rheumatology referral would lead to it.

    My 'i cannot cope, the medication only skims the surface and i keep being tempted to increase my doses myself' are in vain. I have to chase her up tomorrow teatime or wait til tuesday on if gabapentin or similar will be introduced and the rest carries on while waiting for hospital doctors to get round to examine me! Surely this is a joke! Doctors are supposed to help and aim to rid patients of their pain, not literally say we should carry on as we are even when she states its clearly not working and i am spinning down in depression from it all. My folks seem to think this lack of nhs movement is proof its all in my head and i can just brush it all away and get on with my normal routine like i always did if i am not so lazy.

  • Erm ! Gabapentin is used as an anticonvulsant in epilepsy so shes talking out her backside! get a second opinion.

  • Thanks for that! I thought i'd heard of it mentioned before. It was the neurologist himself! Surely these doctors are qualified! Or maybe not

  • you have to wonder don't you, i've been diagnosed today after a constant battle. now i just need my GP to play ball and not expect me to cope with this pain on calpol and buttercup syrup!

  • Good luck with it all. Hopefully you'll have a better experience than me. Am hitting my head against a brick wall since my diagnosis (feels like literally when my migraines get going)

  • i wont be holding my breath ! good luck to you too x

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