Feeling helpless

Just been on the phone with different doctors from 111 for at least 2 hours trying to get some help and advice with the pain I'm in, I told them that I suffer with ehlers danlos type 3 and fibromyalgia as well and it got to the point where I was crying in agony and the doctors advice was 'this is not my area of expertise so the best thing I can suggest for you is to get a hot bath and think positive thoughts, however you're welcome to come to the walk in and we can check to see if your pain is due to you getting the flu'

I feel like I've just been taken for a complete mug and guess what else... im still in agony and finding it extremely hard to cope!!!

11 Replies

oldest β€’ newest
  • Sorry to hear you're in such pain, but there's not much they can do over the phone at this hour other that get you to the drop in centre or to A&E, I don't know what ethers danios is but I do know the pain of fybro, do you have any painkillers you can take, also I find a hot Epsom salts bath is good , are you on our own is there someone who can take you to the centre/hospital, heat is good, if you can't manage a bath, a hot water bottle or heat pad and a warm blanket will help, wrap up and keep warm and try and relax, and phone your surgery in the morning and try and get an emergency appointment , let us know how you get on, take care

  • That sounds so frustrating, no wonder you are struggling with the pain. I concede it is probably difficult to give you advice about pain over the phone, particularly as everyone's pain thresholds are different, but there could have been a bit more compassion for your situation.

    Is your pain all over or centralised, have you had it this bad before, what did you do to ease it? Sometimes by getting stressed and upset it can make the pain worse. Perhaps the doctor in his clumsy way, was suggesting ways in trying to get you relaxed.

    If the pain increases in intensity then I suggest you don't mess about with 111 and get down to A & E as soon as possible.

    Hope you manage to find some respite from the pain tonight.

    x

  • Char_Green95 I am so sorry you were treated this way it is so upsetting when things like this happen. Your hurting and you need help and come away with nothing Been there done it like most on here I guess {{{HUGS}}} I hope you can get to speak with your doctor first thing in the morning. But If you get worse before then and feel you need help please go to the A&E at once please don't let yourself suffer.

    Mo xx

  • So sorry you are going through this. I think sometimes these "doctors need training in how to speak to people properly. "Think positive thoughts".....idiot obviously hasn't felt pain like fibromites have to endure. Hard to think positive thoughts when crying in pain. Ive been in agony with my back , neck and shoulders for over a week and been in tears from it. Ive lost confidence in doctors so I try to get as much relief as I can from magnesium spray, tens machine and meditation. If none of them work out comes the tramadol and I sleep for days. Hope you get some relief from your pain soon. Gentle hugs. Joolz.x

  • Hi Char_Green95

    I am so genuinely sorry to read this my friend, and if you are suffering so much I would go to the walk-in centre or A&E (whichever is closer?). If you wanted to make a complaint about the 111 service, I have pasted you a link below:

    nhs.uk/NHSEngland/complaint...

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Sorry you are going through such a painful time! I have EDS and Fibro too. What kind of pain did you have? all over body pain or a specific joint (subluxing)?

    If it's localised pain you might have injured yourself without knowing it (easy to do with EDS)

    Could you get to the doctors today? If it's more all over body pain have you got any medications you can try? Or ask the gp for better pain medication? Other tings that might help are mindfulness, distraction, heat/ice, massage, rest etc

    Just want to wish you all the best, it's not easy going through a lot of pain. Know that there will be better times ahead. We are all here for you and that you are not alone going through this. Hope pain levels will be back to manageable levels soon

    Hugs x

  • Hi, hope you are feeling a little better this morning, take care

  • Can you find a GP who will refer you to a CFS team and/or A pain management team? They can offer you the help you need hopefully. x

  • Hi Char_Greene - I am so sorry - It sounds like it is time to find another doctor, one that maybe understands fibro....

  • Unfortunately you can't pick and choose what Dr you speak to on 111 It's whoever is on duty at the time. 😟

  • Hi again Char_Green95 I genuinely hope that you are feeling better today my friend, and please take care of yourself.

You may also like...