Yes, I suspect it isn't unusual to feel quite strange when, after years of saying "there is SOMETHING not right" you finally find someone who agrees with you! The exhausted feeling is reaction to that - it happens in all sorts of situations when you get a result, espcially when it fits with your own suspicions.
Before you were fighting what perhaps felt like a losing battle? Now someone with some clout has said yes, you were correct, there is something wrong and this is what we'll do to deal with it. That is such an anticlimax you will feel quite deflated - because I'm sure you have been relating to this new and obviously nice rheumy with a degree of fear in the background that he will say the same as the other one.
i spent 5 years going to the doctor and saying there was SOMETHING wrong - my bloods were normal so there couldn't be was his line. I even faced him down and said I was sure he had me as his "heart sink patient" and that he thought it was "all in the mind". There are loads of us who are palmed off with similar responses - often because of laziness I suspect.
However, now you have a doctor who agrees there is something going on and a likely label - but above all, you have a plan for the way to proceed. It may not be the right one - but it is a start.
Yes, I found the right answer and eventually a doctor who agreed. Been on prednisolone since (over 7 years) which allows me a pretty well normal life (with an excuse not to do housework, what's not to like!). One day it might even burn out - though after over 12 years I doubt it somehow!
This is your 💡💡💡💡moment....if you're anything like me, you'll be experiencing a progression of emotions...from the detachment you describe so well, to euphoria (I invited my best buddy out for a celebration lunch: of everyone I know, she'd been the kindest about my 20 + years of dodgy health...I figured she deserved a big thank you)
I vvvvv much like the way you're thinking about this, and I'm so glad you're here with us
Looking forward: your "take"on how the "process" you're now embarking on goes will be deeply thoughtful I'm sure...you're embarking on a collaboration with all your medics, during which details of your individual version of immune dysfunction & connective tissue disorder will be discovered...along side this, there is the treatment process, which figures out the combo of meds that can help you most
My intial thought is " let's fight with knkwloedge and a can do rather than a can't do but but also acknowledging that I have to be realistic and kind to myself .
So deep breath and let's get on with it
Thank you all for your warm support .and for sharing ..it means a lot ..
Me too...would join 'thinkers anonymous' if it existed 😆...thank goodness for our wonderful forum where we can think "out loud" together instead of just in our heads😉. Courage 😘🍀
Okay , please bear with me , I have deep calf muscle pain in my left leg without redness but it's very sore and my left foot is very swollen and tight and I'm having trouble taking a deep breath in and I ache in my ribs / lung area and starting a dry cough .
A) is this to do with MCTD? I've had the lung chest thing before back in August and am not keen on it happening again
B) I'm due to start steriods do I wait ?
Just feeling very mixed up at the moment .Sorry for the questions .
You have taken this to your GP haven't you? Each aspect alone would ring alarm bells with me so it really does need to be checked out soon. As for should you start your steroids or not - I think that is a doctor question in this scenario. It might help - or it might mask something going on.
I know it is not what we want to hear, but having a diagnosis, is what we strive for to get an answer to our problems. We know there is something wrong but persuading the professionals is another matter, especially when some bloods come back within normal ranges. What I have found that once they have done tests, they are reluctant to re-do them. Over the last 5 years at times, I have had to push for re-tests and when I have they have come back abnormal, hence the hydroxy. I was also on steroids from January 2012 till October 15 various doses.
I am still undiagnosed but at least my rhumy agrees there is something going on, although at the moment he doesn't know what. He put me on hydroxychloroquine in July and I have a review in January. I also take arcoixa (anti inflammatory med) as and when required, although the longer I take hydroxychloroquine, the less I need it.
Since he has put me on it I feel wonderful, apart from some nerve and memory issues, which I can certainly live with if everything else is under control.
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Rheumy review tomorrow. Displacement activity post
to work or not to work dilemma!
New to Lupus
Hopes raised only to be dashed - again. No referral. Won't even try. 
Adrenal Insufficiency update
