my diagnosis

Been back to the docs today to get everything explained to me after going to see my rheumatology doc who didnt explain anything she told me that i have undifferentiated connective tissue and secondary fibromyalgia so they have now uped my amitriptyline to 50mg at night and continue on my hydroxychloroquine so lets see how all that goes.My doc is really good but sometimes im sure they think its all in my head.

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  • hello laney

    i know what you mean about docs thinking its in your head,i too have just had a very confusing chat with my rhumys nurse today,as i have been in a lot of pain and had bad fatigue lately i phoned for some advice and she went back to my rhuemy with my complaints and then phoned me late this afternoon and said my rhuemy now doesnt think i have lupus and wants to do more blood tests,

    i was so shocked as i was diagnosed with lupus 4 months ago and put on hydroxy and had all the information and of course all the stress of being told i had a cronic disease only to be told it might not be lupus is disgusting to say the least.im now left wondering what the hell is wrong.

    doctors just can t say one thing then change there minds months later do they not realise the anxiety all this unknown causes us.

    me personally and along with my GP still think its lupus.

    glad you have a diagnosis and had everything explained it goes a long way of excepting when you are listened to.

    debs

  • I'm starting to think there has been a circular going around the hospitals concerning Lupus diagnosis.....had a very similar experience with my Rheumy Consultant last Friday. It was like seeing a different person from 6 months ago. She seemed to be fixated on the joint problems, while discounting other symptoms (only had 5 mins with her - even my husband was flabbergasted). She finished by saying: "No wonder you are feeling lethargic if you aren't getting any sleep" (I hadn't even said that, just that my sleep pattern was "all over the place") - and then said I had Fibromyalgia - which no-one had suggested before in the TWO years since I've been experiencing similar body malfunctions to many people on this Lupus site! Hopefully, the blood tests will give them a better idea of the appropriate treatment.

    I can sympathise with your distress - all we need is some sensible information, reassurance, and some assistance with pain management from the health professionals. As far as prescribing goes - it would seem that the "suck-it-and-see" method is very much the norm, with no clear guidelines which apply all across the Country. Sometimes I am unsure whether it is the drugs I'm taking, or the condition, which are causing unpleasant side effects (like nausea, vomiting, vertigo, severe back and headache, etc).

    I have been doing some reading on the American Lupus site - and the attitude there is far ahead of the UK.

  • thankyou looby its nice to know that im not the only one still unsure whats going on with their body.

    my rhumey said i should be happy and relieved its not lupus as its a nasty desease ,funny that because when he diagnosed me 5 months ago he said lupus was not so bad.i think he was expecting me to be jumping up and down in the chair.

    im just very angry that they don t seem to understand that those simple words they say to you can then turn your life upside down,its so unfair,a diagnosis should only be made if they are absolutely 100% sure.

    good luck with bloods im too waiting for bloods results.

    debs

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