So confused!

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So confused!

Postby Zia2014 » Thu Jul 24, 2014 2:33 pm

So...I saw 'back up GP' today as 'normal GP' is on holiday. She wanted him to do a rheumatology referral so they could see if I had Fibro and did some relevant tests (including for rheumatoid arthritis). They have all come back clear.

Saw Back up GP today. He said rheumo were pointless as GPs diagnose Fibro, and instead has referred me to the ME/CFS Clinic at my local hospital!!

I feel completely at sea now, I thought there was a plan. I respect them both but I don't know what the best course of action is. I still have no diagnosis! I'm sure the Clinic are great, but I don't know whether they are the right people to be seeing!

:too-upset: :pull-hair:

Those two smilies pretty much sum me up right now.
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Re: So confused!

Postby HazelB » Thu Jul 24, 2014 2:57 pm

If your GP has done all the tests to rule out other conditions, then there may be no use in seeing a rheumy.

The Me/Cfs clinic may be able to offer you different ways of dealing with fibro symptoms. They will also probably be used to seeing people with fibro, as many people have both.

I'd they give you any good tips on dealing with the fatigue... You must let us know xxd

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Re: So confused!

Postby Zia2014 » Thu Jul 24, 2014 3:04 pm

Ah okay, that's true. Although it says they only accept when they've had a diagnosis! Apparently it's a team of O/Ts, physios, CBT and doctors.
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Re: So confused!

Postby denys » Thu Jul 24, 2014 9:03 pm

Thats quite normal to have a multi-disciplinary team at the clinics so hopefully they can give you some advice and help :-D :-D
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Re: So confused!

Postby Zia2014 » Fri Jul 25, 2014 12:58 pm

Hopefully, thanks.
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Re: So confused!

Postby fibro-lu » Fri Jul 25, 2014 6:43 pm

hi,
agree, go ahead with the pain clinic, they are usually good people who have experience in that field :-D
but I hear would you are saying, you still don't have it "black on white" :easter3:
you can still ask your regular GP for a referral to the rheumy for a proper diagnosis

yes GP's can diagnose, ask her to write you a "confirmation letter" (not sure how it is called) if she thinks you don't need to go and see them

tbh when I saw the rheumy it too ages to get an appointment :sleep:
then I waited hours and finally all he did was over in a few minutes, no follow up etc just the letter to GP confirming that he is confirming his diagnosis

but having it in writing is a big thing for us, even if it doesn't change how we are

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Re: So confused!

Postby Zia2014 » Sun Jul 27, 2014 5:21 pm

Thanks, but I think it will be difficult to get a written confirmation from either of the GPs I've seen. To start with they seem to disagree with each other over everything, and the first one says it's not up to her to diagnose and wanted the second GP to refer me to rhuemo. The second GP thought it was Fibro but left it to GP1 to diagnose that, and as she hasn't he hasn't referred me to rheumo but instead to the CFS clinic!

Which leaves me in complete confusion :crazy:
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Re: So confused!

Postby carolad » Mon Jul 28, 2014 1:51 pm

Zia2014 wrote:Thanks, but I think it will be difficult to get a written confirmation from either of the GPs I've seen. To start with they seem to disagree with each other over everything, and the first one says it's not up to her to diagnose and wanted the second GP to refer me to rhuemo. The second GP thought it was Fibro but left it to GP1 to diagnose that, and as she hasn't he hasn't referred me to rheumo but instead to the CFS clinic!

Which leaves me in complete confusion :crazy:


I'm not surprised you are confused...what a nonsense!! I really do wonder how doctors get away with such appalling organisational and communication skills! I saw a Rheumatologist (privately, for 5 appointments) and he did the usual tests to rule out other conditions and then confirmed I had scoliosis and then waffled on about non restorative sleep and muscle pain and how I need to rest more and stop driving myself so hard.... But he never give me a direct answer on what was causing my pain and fatigue. It was only when I saw the letter that he sent to my GP that I realised he had diagnosed me with Fibro but hadn't actually told me :-x

I wonder whether the CFS clinic might be more clued up - surely there will be Consultants there who would be able to formally diagnose you? That is if you haven't actually been diagnosed already and just haven't been told about it!! It is definitely worth asking at the Clinic what the GP has said about you.

Good luck with the Clinic - I hope it helps :)
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Re: So confused!

Postby FluppyPuffy » Mon Jul 28, 2014 2:46 pm

Give the CFS Clinic a go as you never know how they might be able to help. Even if you just go for the initial assessment session and they are unable to help as your symptoms present more towards FM than CFS, they should go back to your GP with this finding. This then might help get a Rheumy referral moving for you.

One of your GPs does need to get their backside in gear and start making some decisions about what to do for your treatment instead of thinking/assuming/hoping that the other will be doing it. If not, you'll be constantly going round and round and round which will ultimately send you to LaaLaaLand :crazy: :crazy: :crazy: :crazy:

Maybe it's worth being a little more direct when you next have an appt. Tell them exactly what being in LimboLand is doing to you and that you need to start getting some answers so that you know what you're up against/facing so you can start and live your life with whatever it is, instead of having to lumber thru one day and the next and the next, wondering just what it is that is affecting you.
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Re: So confused!

Postby Zia2014 » Mon Jul 28, 2014 5:05 pm

Thanks both. It's really not helping my frame of mind all this!

Carolad - I was never told my ibs diagnosis either, I read it upside down on a letter in my file! It's shocking how they don't communicate these things when they're so important! Will definitely ask the clinic for some direction.

Hi Fluppy, oh I will definitely be going in the hope I get some straight answers! The main gp has been off sick twice and on hols, so the only reason I've seen the other wasdue to that. I don't really like her but they want me to have continuity. Tbh if the clinic says its fibro I will ask for a rheumo referral directly to save going back to a gp!!
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