I have been trying to get help for almost a year now, and I feel like I'm just a parcel in a game of NHS pass the parcel. I'm being passed from person to person, each of whom tell me there's nothing they can do and tell me to go see someone else or just to go home. Pain management discharged me from there service last week saying there is nothing more they can do, which is a joke because they literally haven't done anything for me. They haven't done one test, prescribed one medication, or offered me any support whatsoever.
The only people I've seen so far is my GP and other GP's at my surgery, a physiotherapist(twice for 20-30min), community pain management, and I had one 15 minute phone call with a neurosurgeon. I keep telling everyone I see that I want help and support, and that I don't have any. I keep asking if they can't help me, who can? There is never an answer other than we can't help you or there is nothing more we can do. The NHS is a joke. Sometimes I wonder if I told them either help me or I'm going to kill myself if they would actually help, but a part thinks they'd just stick me in a mental hospital and not actually help me anyways.
I'm in so much pain right now, and I don't really see much point in living anymore, when no one seems to care. I don't know what to do, and I don't know how other people manage to get help because I certainly can't get any. Honestly, I am ready to die.
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Kat791
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I know it feels like nobody cares, like nobody will help, however, one day things will get easier. I am not saying the pain will stop there is no miricle cure but you will find a way to cope the same as the rest of us have. I tried for a long time to find someone to listen to me to find help, to find someone to give me hope. Then one day I realised that to find the help I needed I had to go to people that understood so coming to this forum is a start. Everybody on here understands your pain. I cannot make the pain stop or magically disappear but we can all listen and give advise when we can.
I know exactly how you feel it took 5 yrs for me to get a diagnosis, I was just sent for blood tests constantly and that was it, I was finally Diagnosed last January, if you’re not getting the help off your doctor, I would suggest you change practices. There’s not much they can give you it’s trial and error which paying a relief suits you, but they should be offering you some counselling, physio and relaxation techniques, don’t give up x
I can empathise as I feel much the same way as you do. Please know we’re here for you.
Unfortunately, as we’re all aware, there is no miracle cure for what we have.
GP’s follow NICE guidelines - you can google the NICE guidelines to review the pathway.
As there is no ‘cure’, all they have is research that shows CBT, physio and pain management strategies may help. It doesn’t mean they will help but then the GP is at a loss and is technically doing what we’re all doing which is shouting into the wind and seeing if anything sticks.
Until further research is done and some major breakthrough is made on how to get this right, it won’t be any different for any of us. That’s why ‘self care and self management’ are so important. We have to find a way to deal with our symptoms. And I say that in the most gentle way as I haven’t yet got anywhere near managing myself or my pain and fatigue.
I’ve just been told by Occupational Therapy that my symptoms justify a referral to the chronic fatigue specialist via the GP (but the GP didn’t suggest this as I haven’t got the CFS/ME ‘label’ - despite having all of the symptoms) so I’ve had to ask for the referral to be done myself.
I don’t know if it will help but the management plan for CFS is also slightly different to that for fibro - and so far none of the Fibro management has been working for me.
Please don’t beat yourself up and please reach out if you’re in crisis and having thoughts of suicide at any point. You can call 111/999 if you absolutely need to. There are other mental health services you can talk to also. I’m so sorry you’re feeling like you are, and at your young age too. Sending lots of love x
Fibro makes my GP say the same, there's no cure as such but we need to live with the pain and adapt accordingly...
I don't wish to take the drug route so I live by pacing, heat and lots of resting. I don't achieve very much in comparison to my former life but I have learnt to accept this pace of continual, stretching from physio advice, keeping very warm and walking most days to keep me mobile...
I now have new issues with my arms+hands and it's so debilitating. It's a constant challenge to feed myself and dress. Too many days I used to slip emotionally but after years of long term depression, I never want to return to that state so I work very hard at changing my attitude to what I can't do and look for an alternative that is more satisfying...
It is a hard challenge to keep looking for the positives but it's the only route for me!
Keeping positive during pain is dreadful but I have to try...
Thinking of you all who are struggling; it's certainly not easy... Wxx
Dear Kat, As the other people have said, don't give up! I was diagnosed 2 weeks ago with fibro, and suddenly the whole array of symptoms which to me said I was going mad, now they all make sense. So in one way having the diagnosis was a good thing, it relieves my stress that I've got dementia etc. and my guilt about always having to sit down halfway through a job to rest. I live alone so I've just got to get on with things. But I'm 70 and not young like you. It can be scarry thinking of how you're going to get help. I joined a Firbo/ME/CFS(?) help group locally and at our first meeting we all laughed at opurselves and went away smiling. We've started a WhatsApp group to message each other if we're having a bad day, or for people to reach out if they're not coping either physically or mentally, or even practically like doing some shopping for somneone. This has given me a boost, because some of these women have been sufffering for 30 years, but they all gave insights into what helps them, because it is not a one-size-fits-all thing. Join Fibromyalgia Action UK, learn about it all - understanding somehow takes away the fear. I'm asking my physio to refer me to a local swimming pool where they have a hydrotherapy pool, so much warmer water, where we can get exercises from a physio to do in the water. And it's at reduced rates so more affordable. Please don't give up, I know when the pain is all-consuming you feel like that - but you are worth it. We all deserve to live long, happy and fulfilled lives, we just need to find our way around the challenges and fight. Thinking of you and sending positive vibes, Sheena xx
Some great responses and I totally agree with many of the comments . The medical profession can’t provide all that we need until the world of medicine understands a lot more about our Fibromyalgia condition . We need to utilise the internet and source self help ideas and thoughts and try them ourselves until then . Gentle hugs everyone x
Hello , I am so sorry too read this , I started with this forum too as talking too people here that understood how it can be, helpful replies and friendly advice, I agree change doctors surgeries if possible and take a close relative with you for back up so you will not be palmed off and say exactly how you are feeling on the appointment. I can empathise as I had a doctor for few years that was not paying any attention ☹️lucky I did get too see a doctor who was totally clued up with Fibromaylia. Also when you ring 111 service they have a service you can press 2 I think for mental health support, do talk too someone close for extra love and support xx
Don’t give up. Have you tried taking Magnesium tablets? I find they help sometimes, and sometimes is better than being in the pain we all know but hard to explain.
Medical professionals don’t really understand Fibromyalgia, they really don’t have any answers either, there is still so much research needed to properly understand both its unique symptoms to every single on of us, never mind all the other bits of symptoms we all commonly share. Don’t give up, Just ask someone knows an answer.
Everyday is a battle. We put on a brave face while silently crying inside. But determination gets us through
Dear Kat, So sorry about the brick walls that keep coming up in front to you. First and foremost you need someone you can talk to who will really listen and understand. I really would suggest starting with The Samaritans. It's not religious or just for potential suicides but they are highly motivated to help people who are feeling desparate. Give your local group a ring. They have resources and imagination that other organisations do not have.
I would also suggest asking at your local health food shop (where there are often wise and caring staff) about natural medicines and local practitioners, including acupunture and chiropractic which have helped me. (Some might even give you a treatment for free if you ask and can't afford much, but go with women practitioners first).
When I start sinking into a depression I start taking Rhodiola and it helps a lot to shift my mood and energy upwards but check out contraindications online or with a pharmacist always. Meanwhile, I am supported financially at home (age 78) but recognise it is hard if you are not. Be careful if you confide in people who are not in vetted voluntary organisations, even if it's a church, but more and more people and orgs are caring about other people's sadness and have set ups to help. I will just finish by adding that the pain I had at the beginning when I was first diagnosed has diminished much over time.
Meanwhile, I am maybe a bit potty but happily own to talking to Angels, trees or whatever. Currently it's the rescue cat. It helps you give feedback to yourself and develop your intuition about things. Looking back I preferred being thirty. It somehow makes you a bit more assertive and positively self appraising. Developmentally, you have only recently completed all adolescent brain changes by about two years. Thirty is much, much better and a good while before menopause. Don't depair. Keep coming to this site where there are loads of people who understand and care. Gentle hugs. 🌺
Please don't give up - try to find a "Pain Cafe" locally, check with your surgery. Ask if your surgery has any Health Coaches (I've suffered for over 40 years, but these are a relatively new thing and Emma has been such a help. They will help you to find other people who too are in constant pain, they understand and you can help each other.
I found "10 Footsteps" through going along to a Pain Cafe. It has helped me no end, I've managed to reduce my medication and I feel a different person, I do have pain still but its different as I'm more in control of it and my life. Sending you very gentle hugs.
Dear Kat, It breaks my heart how hopeless you're feeling and I really sympathise with you as I've been through hell and back for years exactly like you being pushed from 1 doctor to another, not being listened like what I'm feeling means nothing to them. I've realised sometimes the only way for doctors to listen is to go to ER that way someone will refer you to the right department.It took 5 years for me to be diagnosed with Fibro and spinal stenosis and more to get any form of financial support. It's sad how doctors don't take Fibro that serious and I'm honestly annoyed all the time I have other symptoms they just assume it's Fibro and not investigate further. Stay strong darling and not lose hope sooner or later things will get better. Big hugs xPs I Don't know what pain medication you're on I'm on Pregabalin, Naproxen and Amitriptyline and Sertraline. Might be worth changing pain meds I've been on Duloxetine for years and the pain was worse.
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no one will listen
A big hello and please help me !!! 
No one understands me
Just moaning ( sorry ) 
Headaches no GP or A&E can tell me the cause
