Feeling frustrated with doctors

Posted , 10 users are following.

Hi everyone, well I went to see my consultant rheumatologist on Friday, he is not one for CFS, his words were its all a matter of opinion. Anyhow, feeling the way I have for 12 years , I strongly believe I have CFS I have all the symptoms, however because my antibodies are low indicating my body is fighting some infection, he is reluctant to diagnose me . I said well it's been fighting an infection for 12 years then, at which point he actually took note of me. And said well it could be both CFS and some underlying infection that your body can't shift. I just felt deflated that I still don't officially know whTs wrong, yet every few weeks I crash and get ill. On a positive note he has referred me to a immunologist at a great hospital. This consultant has referred a lady with exactly same symptoms as me to CFS clinic so am hopeful I will get to find out either way what's wrong.

its just a shame docs poo poo CFS. Don't get me wrong, it's not that I want this condition, I just want to know what's wrong. I have been pacing myself since I crashed 3 weeks ago, am still very tired yet, and taking things easy. But to get to the right people would put my mind at rest. Just wanted to see if anyone else had similar experiences.

thanks all 😒

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  • Posted

    Trouble is, even with a. Diagnosis I still hope that someone will find something 'prophet' wrong with me..... It seems like the diagnosis of CFS really means 'we don't know what's wrong with you'.
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    • Posted

      The trouble is Deborah that we have an expectation that doctors know everything and can cure everything and they simply don't and can't. That's probably the biggest lesson we have to learn with ME/CFS and it's a sobering one when it hits home.

      Unfortunately for most of us it's a situation of ' If you want an expert on ME/CFS, look in the mirror.'

       

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    • Posted

      Spot on.

      They gives insulting guesses too, blaming the patient. I always said, "Hey, what you're telling only work for people in 'normal' state! It doesn't work for me, in my current state!"

      Unless thet got CFS they will never understand.

       

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  • Posted

    Appart from discounting hundreds of thousands of patient testimony over many years, what trial results and test results do these experts base their 'unimpeachable medical diagnosis' on?

    Why do we not all (invisible ailment sufferers) ask that question every time we get a poo poo diagnosis?

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    • Posted

      exactly George, its such as shame doctors behave this way. Even a consultant i know thinks its a nonsense diagnosis, he even told me it was in my head and to take anti depressants, even though am far from being depressed. He sees me when i go down hill so should know from looking at me and the fact i get sent home from work that thats not a symptom of depression, grrrr x
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  • Posted

    The independent female doctor from mid Wales who cannot be mentioned was quoted in the newspapers that most doctors think CFS sufferers are "work shy and mad".  How nice!  I accept that I may never know what caused it.  To keep searching would drive me mad.  so I've adapted and stear clear of doctors whenever i can.  you do need to have everything else ruled out first though.
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  • Posted

    Well of course you want to know what is the matter with you! We all want answers!  Since you have had the condition for a long time the diagnosis, if it is ME/CFS will not come as a shock, but a relief.

    Her is hoping they can figure it all out :-)

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    • Posted

      thank you, exactly, i really honestly believe it is, and knowing wont change anything as i know there is no cure, but at least i can be signposted to the right people who can help and advise me x
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  • Posted

    I don't want to demoralise you but even when you do get to see someone and they agree with you that its CFS, then what? There is no magic cure for this condition, just pop this pill for a week and then you will be better.

    My advice to you is while you are waiting to find someone with confirmation of the condition look at your boom and bust cycle which is a few weeks. I would start looking at what you do during that period of time and either start removing some activities or take more rest periods of 30 mins. If you can then go longer without busting you are starting on the right road.

    My GP believes in CFS and she kept saying to me pace, pace and use 30 min rest periods. For years I ignored her, then last year I followed her advice and now life is so,so much better for me.

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    • Posted

      Thanks, i have been taking things very slowly since my last flare up, cutr everything right back, and keeping a pacing diary too now. My energy levels have not been great anyway so that stops me luckily from over doing things. I notice too that my legs ache very quickly( as if i have done loads of exercise) but not done very much, if that makes sense. They fatigue very easily. I am just doing some gentle stretch exercises at home, and 15 min walk around block with dogs for now. xx
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  • Posted

    Hi you don't say why you were seeing the Rheumatologist? I have RA and that has been like having a cold (without the runny nose) for years. My Rheumatologist put me in touch with the CFS team after I made a complaint about his attitude towards my symptoms. I still feel that there is a diagnosis of something else waiting around the corner for me.
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    • Posted

      my Gp ref me to them for pains in neck and hips, and my CFS symptoms. To be honest he has not been a great GP. I was originally seen by endocrinology who specifically asked him to refer me to CFS consultant, but he didnt. I think this is why i am gettign frustrtaed with doctors. He also failed to do some bloods thta was requested, then put me doen as having CFS when not diagnosed, then when i asked him if i had been diagnosed he said not yet your still having tests. So why on earth he added me as having it to my clinical notes is beyond me, i just get confused with it all.Then i saw 2 different rheumatologists, 1 said prob ME with immune problems, other said we need rule out immune probs first befor ewe can make diagnosis, which i suppose is prob best way to be honest, x
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  • Posted

    I totally get you Nichola.

    It is soo frustrating! There are way too many of us waiting way too long for a diagnosis. It took almost 9 years for me. And yes, it's not that we WANT to have CFS - we already have it - we just want to know what's wrong. It could turn out to be something more treatable if we're lucky. If the doctors took us more seriously in the first place I really do wonder whether many of us could have recovered with the right care from the begining.  But as tired-physio mentioned it; perhaps they do think we're work-shy but there is no grounds for that. It's just something certain politicians and their supporting newspapers have affected. Most of us WERE probably working very hard when the illness struck and many of us have continued to do so, or at least tried to for years! Work-shy indeed! It's often not until we end up completely 'ucked that we are forced to stop and I'm sure that we could have a greater chance or recovery if we were 'caught' sooner.

    Even so, i hope you do manage to get that referral you so need. Being aknowleded and believed is in itself a relief if nothing else.

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    • Posted

      thank you for your reply. x I do hope it is somthing treatable, I really dont understand why lots of doctors are so against CFS when so many people out there suffer with it. I guess i just need to wait and see what happens now. xx
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