Ehlers-Danlos Support UK
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Disappointed with Rheumatology Consultant

Hi everyone. I've had exactly the same experience as you all with a Rheumy Consultant. I prepared a detailed list of symptoms and marked the ones i share with my mum. He wasn't interested really. He said I have JHS and fibromyalgia and that he would get my GP to refer me for specialist physio and CBT. Then he discharged me. I felt that he had decided this before he saw me. All i want is some pain relief. I don't wish to be rude but if doctors could spend a week in our shoes they might be more sympathetic.

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Hi Pompey. So sorry to hear of your experience. I had exactly the same from rheumatologist - dismissive and uninterested. Yesterday I had a neurology appointment. Almost cancelled because expecting more of the same, but the neurologist was lovely. She read my list, explained that she could only help with her part of it, but that I should see other specialists, recommended new meds I can try, and is referring me for tests for POTS and a CT scan and wants to see me again. It really helped,just being listened to and taken seriously. I can imagine how you must be feeling, but persevere, all doctors are not the same. I have found it helps if someone can go with you, to back you up, extra pair of ears, and as a witness if you need to complain.

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Hi JoJo91. Thanks for the encouragement. I will persevere and try and get more help, although it has taken years to get my GP to refer me to someone who might help. It gets to the point where I can't even be bothered to go to my GP. I just want the opportunity to go through all my symptoms with someone who will actually listen xx

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Perseverance is key, I often don’t feel like going To gp but you need to badger him or her until they refer you Have you seen a pain consultant

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Hi. No, I've never been to the Pain Clinic unfortunately. It would be nice to have the opportunity though xx

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WoW you are so lucky to have found an understanding informed neurologist! I am so happy for you. You must feel like you're on top of the mountain. My neurologist sent me away dismissively and literally said it is a joint problem ONLY. I hope your success with knowledgeable doctors continues 🌻🌻🌻

I'm to see Dr Hakim in early April.

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Thank you. Sadly it does feel like a lottery. At least she did see things at their worst for me as I was so anxious expecting another arrogant dismissal. I have only recently been diagnosed aged 59 so I have a lifetime of doctors and others minimising my symptoms. Good luck with Dr Hakim, I have heard all good things about him.

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Thank You 🌻

I think anxiety allows the Dr to view us in a vulnerable state that we live in daily.

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I try to always have someone else with me for the same reason you have stated a witness and I find that doctors are different than when I’m on my on

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H, I am sorry that you got an out of date and incorrect diagnosis. JHS isn't a valid diagnosis to make anymore and the fibro bit is almost certainly wrong and just means you have joint pain with no visible or testable cause.

I would accept the physio and the CBT though because they are good ways of dealing wth this problem anyway, but as Jojo91 says keep pushing for a referral to a rheumy who can diagnose it. There is no justification in not giving you pain medication if you are in pain. Just see your GP and ask for pain meds for your current pain levels.

Describe them and give a number out of 10, so for eg. before tramadol, I was in pain all the hours I was awake and it woke me up every single night. Pain levels were 6/10 in the morning, 3/10 midday, increasing back to 6/10 in the evening and continuing all night.

Can you afford a private consult? I think the fee is £300 plus a trip to London.

When, eventually, somebody comes up with a way to test for hEDS and for (separately) fibro, there are going to be a lot of confused and upset people around. hEDS has a strong, though not 100%, genetic link and is a collection of system wide problems including joint pain. Fibro is being used as a catch all diagnosis for joint pain in isolation as all the diseases which should be being excluded first are not being properly looked into. So JHS is really hEDS, which causes joint pain by an easily understood mechanism. Not fibro, which has an unknown and untreatable cause. Here is one of many websites where someone has done some explaining on ihttp://nationalpainreport.com/why-you-shouldnt-blindly-accept-your-fibromyalgia-diagnosis-8831640.html

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Thank you so much for the advice xx

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Hi PompeyAlli,

I had a simular experience with Rheumatologist and Neurologist... so I can appreciate how your feeling.

By a complete fluke I had a really good result from the Pain Clinic Counsellor. But this was because I went to the wrong hospital, got lost, anxiety was maxed out, and the stress heightens all symtoms. So she saw me in full on pain, spasms and everything else that goes with EDSers.

But maybe because your exasperated with the situation it might be a good place cor you to start. I was at the end of my tether because all my notes from the States were lost and starting at ground zero AGAIN.

I'm seeing Dr Hakim in April, because so many people here have suggedted it!

I wish you all the luck in the world 🌻

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Thank you so much for the advice xx

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Hi Pompey ...because of your name i take it youre in or near Portsmouth?I first had an appointment at QAhospital cosham .saw a lady doctor and fealt it was a waste of time ..I went back to my own doctor and he said if there was a particular doctor at QA I wanted to see he would wrote to them .My sister had recently been to see a doctor privately who was great .Anyway i got to see him at QA for a good 45 mins on nhs and he has said i can always go back to him ..so persevere !

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Bless you. Thanks for the advice. I will give it a try xx

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