Old 02-13-2017, 02:10 PM #1 (permalink)
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Default Where do I go from here?

I had my rheumatologist appt today and saw a different doctor. I've waited months to see them, have been at my GP constantly and am attending regular meetings with my boss at work due to sickness absence. I pinned all my hopes on getting some answers today and the doctor was useless!

She said if I have another flare, to go to my GP to try different drugs. I told her I don't sleep, my mood is low & almost every day I have pain and that's not during a flare. Her answer was to maybe refer me to pain management in the future and to see me back in a year! I asked for a diagnosis and she said that I have hypermobility, chronic widespread pain (really?!) and when I asked about fibro she said it wasn't very well understood and that the only test for it is to rule out everything else first which I have done. My boss is hassling me for a diagnosis and I still don't really have one. I was so close to tears, feeling frustrated and let down but gladly managed to compose myself until I got out of there!

I feel that the doctor was not interested at all, I'd like to see how she would cope with pain almost every day in life! I'm not sure where to go from here, like I said to the rheumatologist, I've been pushed from pillar to post for years with no one knowing what to do with me. I've had physio, hydrotherapy, pain management, I'm on more meds than ever but nothing has helped!

Sorry for the rant, I just feel really let down by the health service today. Just because you can't see an obvious illness, doesn't mean it doesn't exist!
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Old 02-14-2017, 03:41 AM #2 (permalink)
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Default Re: Where do I go from here?

Can't you own dr diagnosis,it was mine who did.also your boss will have to wait.when you get a letter saying u went to the hospital and what was said.take it and give them that.
But I can't see why your own dr can't give you a diagnosis.maybe hassle him a bit.telling you you have widespread pain,is almost as good as saying you have fibromyalgia.but I no you need to hear the words.all I can say is some of us took years to get told.it is hard.
Can you maybe see another rheumatologist,?x
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Old 02-14-2017, 12:29 PM #3 (permalink)
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Default Re: Where do I go from here?

Thanks for your reply forgetmenot. I phoned my rheumatologist' secretary today & told her I wasn't happy with the other woman I saw, am hoping I'll get to see my own rheumatologist instead. I got the impression that the doctor I saw knew nothing about fibro. My GP isn't interested, he has been great but won't commit to giving any kind of diagnosis now that I'm under the care of a rheumatologist. I've had widespread pain that dates back at least 10 years & I'm back to feeling crazy, like this is all in my head & that I'm just a hypochondriac! I'd be devastated to be told I have fibro but at the same time I want to know that there's a medical reason for these horrendous pains that keep cropping up, each time in a different part of my body. This is such a rollercoaster, I can see why people suffer from depression with chronic pain & fatigue!
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Old 02-15-2017, 06:55 AM #4 (permalink)
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Default Re: Where do I go from here?

This is a hard one because chronic pain all over is fibro if no other cause can be found..this is the first way my condition was also described a decade ago.
Your not a hypochondriac...this condition does send you half crazy at times..especially when doctors are so unsupportive of our various situations.

Even a diagnosis of hypermobiity and chronic pain would at least keep your Boss off your back for a while....i would keep trying to get in with a rheumy that believes in fibro..you can often check out each rheumys areas of expertise on the hospital or NHS trust website....or the secretary should beable to tell you who deals best with what conditions.

I wish you much luck and relief soon.
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Old 02-16-2017, 01:33 PM #5 (permalink)
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Default Re: Where do I go from here?

Thanks willow. I'll just harass the secretary a bit until I get seen properly lol, makes a change being on the other side of it, I'm usually the one being harassed (I work in the hospital) unfortunately we don't get any perks being an employee and don't get seen any quicker. It helps knowing I'm not alone in this and I'm not nearly as annoyed and frustrated now as I was on Monday after my appointment. I wish fibro was much more understood!
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