So infuriating :(

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!!!

8 Replies

  • Surely if you're in that much pain you should've been in A&E rather than calling 111

  • While the positive thoughts comment was a bit patronising and dismissive the 111 doctor likely gave the best options they had available. Over the phone they can't reduce a subluxed or dislocated joint, and they won't prescribe pain relief by telephone either - it would be irresponsible. If the pain is related to a potentially emergent or unknown cause I would agree that A&E is your best option, but if this is an escalation of your described known conditions then you are more likely to get the assistance you seek by seeing your GP for a pain management referral. If you potentially have the flu then unless you have one of the risk factors (see NHS choices) they are very unlikely to intervene through 111 - the invitation to the walk-in was, again, the best they could do really as again the GP is the best bet for flu as well. You know your body best and if you have any concerns I would visit your GP as an emergency appointment today or A&E if it hasn't let up and you're worried. Please don't feel too upset by the call - I am very sorry about the pain you're in and I hope you feel some relief soon.

  • I'm so sorry. My husband has been in that situation before many times and has given up on the NHS completely. Only a few of the doctors he has seen even know what EDS is even though it's everywhere now. Those that do know the disease know how little can be done to ease your suffering, so they want you out of their hair asap.

    The best advice I can give you is to take your pain relief into your own hands. You know how much you need and need to be strong to avoid addiction. If you need help sourcing let me know. Xx.

  • Hi, I hope your pain has subsided a bit. I really sympathise. Pain on this level is truly awful and it stops you being able to think properly or function. People who have never suffered this kind of chronic and acute pain mix have no idea.

    When I have thought I couldn't cope, (such as having flu on top of everything else), my advice, based on just my own experience, so probably not much help, is to try to sleep through it. Go to bed, take the maximum doses of anti-inflammatories and straight pain killers that you can without overdosing, pile on the duvets and hot wheat bags and try to sleep through it. Make an urgent appt with your GP to get your pain medication upped. If it is caused by a single joint, a dislocation/sprain/subluxation, get your GP to do an emergency visit to you and give you muscle relaxants, pain killers and anything else which they think useful such as steroids.

    To an extent, I agree with kelw. You are the one in pain and, if you have not done it already, you need to decide where your daily threshold is, and put in place the resources and plans of action for what you will do when you go over the line. That might even involve alternative or currently-less-than-legal methods of pain control. Each of us has a different tolerance to and experience of pain. Doctors have very little understanding at all, and usually not a lot of interest either, and they are very sold on the idea of less medication and more 'positive mental attitude'. I think that is a lovely idea, but you can't achieve that until your pain is first under good control, and you have a range of options to choose from when that control slides.

  • PS. I am not against mental coping mechanisms for pain: for some kinds of pain, I have managed it over the years. Yesterday, I had a cyst removed and, as is the way with us hEDSers, the anaesthetic wore off long before the end of the procedure. I have enough experience now of this happening so I have the mental equipment in place to deal with it; I urge the doctor to just carry on a bit more quickly, without flinching when the stitches go in if possible!

    I understand very well that pain is just a largely redundant message from nerve endings to your brain. But fatigue and overwhelming body-wide bone-deep pain at the same time is the difficulty...

  • I cannot recommend this highly enough for pain:

  • I don't think getting a hot bath is good advice. I got hot baths and applied hot water bottles to my sore joints and it made them worse.

  • I agree, and would never recommend a hot bath - I stopped taking baths years ago because they were so ridiculously draining. A hot (or warm) lavender wheat bag on the other hand can really help with my painful joints - monitor the heat and make sure it isn't too hot.

    I don't use hot water bottles because they tend to be too hot, and ironically they also become too cold if you fall asleep with one.

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