Furious and offended

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Hi all. Well wishes to all in the new year.  

I am so cross. I had an appointment at cfs clinic earlier this week and feel it was a waste of time. Apparently i feel rotten because i am blind and find life difficult  they may reconsider diagnosis because of it. I did try to educate her but failed. For an expert she seemed to discount a lot of symptoms as unrelated. I wish she  could live my life for a day and understand i feel terrible but not coz of sight. Sorry to grumble. Tried to keep it short

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  • Posted

    Hi Donna,

    Its awful to hear that the CFS clinic has treated you in such a way that it has upset you. I find it really upsetting that you weren't listened to fairly and we're almost palmer off due to another matter! and yes I do believe that if others had to live with this condition they would reconsider the way they treat people!

    Were you referred by a GP? Maybe they could help refer you to another specialist? 

    Kristy x

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  • Posted

    I find that quite interesting as my own doctor refused to refer me to a clinic.. he said i wouldnt find it helpful and it would be a waste of my time and energy.  Now reading your post im glad i listended and didnt push it sad  It amzes me how dismissive of the ilness people are.. but when you look at all the latest research it clearly shows it as an auto imune disorder causing swelling and changes in the brain and also loss of white matter. ..  its all very sad that we get treated so badly.. the sooner they get a test buttoned up .. the sooner we can finally get some recognition and hopefully help too. xx
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  • Posted

    Donna:

    You have every right to be angry and don't need to apologize. If at all possible, try to see another doctor. Was this person a specialist? If so, double shame on her.

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  • Posted

    I am so sorry to hear of your treatment by the supposed expert in CFS.  It is a multi symptom illness and no two people feel alike.  It is doubly shameful on her part because the impact of the stress caused on your health is extremely debilitating when you already feel bad.  I had a doctor tell me the reason I was unable to walk unaided was due to a panic attack and he prescribed valium!  Another sent me to a psychiatrist saying it was all in my head.  Luckily for me the psychiatrist sent back a report saying that yes, I had depression but that it was caused by my illness and the impact on my life!  So don't take this lying down (ironic, I know).  Name and shame.  Write a letter to the health authority about your treatment and how it made you feel and see your GP about a referral to another specialist.  Is it possible this person wasn't a CFS specialist but and endocrinologist?   Many of them have very little knowledge of CFS or sympathy for those who suffer from it.  If you can't face complaining at the moment, try to write down what happened and put it aside for a while.  You have time to make a complaint in the UK - it doesn't have to be done immediately, though if possible I think that it would be good to do it asap.  Goodness knows what this imbecile is saying to other people!  Thinking of you.

    Linda

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  • Posted

    Hi donna63932

    I had a negative experience as well at my CFS clinic. I went back to my GP and to be referred to a differentone. The 2nd clinic is better all round. They are 100% better. It was the best move I could ever had made.

    Good luck. 

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    • Posted

      Hi sharon, i had same experience at the maidestone hospital CFS clinic, could you please tell me were you went that was better? Would be good thing if everyone names the clinic they go to so people can qvoid these problems. 

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    • Posted

      Hi Kathy

      The name and address of the better hospital:

      Royal London Hospital of Intergrated Medicine, 3rd Floor Outpatient Department, 60 Great Ormond Street, London, WC1 N3HR. 

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    • Posted

      Oh, thankyou so much for that, i know how much effort it takes to even type a message, cant beleve the confusion of it all, ME is so different to CFS why are they mixing the two together i dont know.
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  • Posted

    Thank you for your comments. I went to a place in ongar. Essex. Not a plesant experience. My gp exhausted all possibilities before referring me. He is convinced i have cfs and wanted support for me. I had to take a taxi costing over £35 each way as transport is to tiring. She made other comments regarding weight etc that may need addressing but not the reason for illheath and showed her lack of knowledge and understanding of cfs  feeling unwell is punishment enough without this kind of treatment  
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  • Posted

    Just to update you guys. Received copy of report for gp. Detailed assessment as chronic fatigue due to disability, but worded supposedly carefully. Poor diet and anxiety issues. Being referred to occupational therapist. Will return to gp to see what he makes of it as it questions his diagnosis. Think i will just forget about getting a diagnosis
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    • Posted

      Hm. Chronic fatigue due to disability is not the same as ME/CFS. I'd be mighty p*ssed if that is the assessment I received. 
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    • Posted

      Hi Jackie. I am astonished how the woman could attribute how I am suffering with my sight loss I know no different so do not find it hard. If this was the case every sight impaired person would suffer with chronic fatigue. All the research i have done indicates cfs. I know i am not an expert. I only get anxious about letting my family down but very mildly. And as for diet i think theres always room for improvement. Am seeing gp next week to discuss it
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    • Posted

      Hi Donna, 

      Like Jackie I'd also be miffed if I got that diagnosis.  Never mind, we all know she is a pratt.  Important thing is the person treating you which is your GP and in my opinion they don't like being second guessed by other docs.  I expect he will go ahead with a diagnosis of CFS/ME and hopefully get you treatment.  Don't stress about it if you can help it.  In the long run it is just one person's opinion and you aren't going to be seeing her again.

      Linda

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    • Posted

      Hi Linda thank you for your comment. I totally agree. Hopefully my gp will too! Am feeling wiped out today. Really struggling
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    • Posted

      Hi Donna,

      Most people, not just us ill folk are wiped out on a Friday night.  So just pretend, give yourself a break and put your feet up with a cuppa.  It is allowed!  (I know, it isn't like normal end of week tiredness)  Or lie down with a chillout album.  If you can't do anything then use the time to relax and meditate...I fool myself all the time when I am really bad.  There is no point in punishing yourself for being ill when the illness itself punishes you enough.  If you need to lie down, at least make it more enjoyable for yourself.  I hope you feel better soon.  Thinking of you.

      Linda

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    • Posted

      Hi Linda. I do love my music and use it as my escape. Have too many things going on around me and i know i should pace but licfe does not always want to dwzait until i am ready.

      But heres too a me trying to chill and to you fab guys who have been commenting. Sorry for typos ... Tired... G😀😣

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    • Posted

      Hi Donna,

      All that stuff whizzing around you - I totally get it.  Please, please try to prioritise cos it isn't always as important as we think it is....and it isn't as important as your health.  You are in a tough spot and I sympathise with you cos I know what it is like.  I just hope you can find enough balance to make sure you don't make yourself even more unwell.  Thinking of you.

      Linda

       

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    • Posted

      Hi again 😀

      I have to let alot slip by me so i can just do the absolute necessary. Mentally it grates when i cant do something but physically i know i am punishing myself And there are enough people to do that for us happy thoughts

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