Confused and Frustrated

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Confused and Frustrated

Postby Purpledot » Tue May 14, 2013 5:42 pm

I have just found out that I can't be seen at a local ME clinic because I have a diagnosis of Fibromyalgia. :?: :?: :?: They said they can't see someone who has Fibro as the treatments/management don't fit with each other and may compromise each condition.

I was initially diagnosed with ME many many years ago, but it eventually drifted into the background and I was in semi-denial for a long time. I became very ill about 6 months ago and my GP is convinced this is a major ME relapse, coupled with an onset of Fibromyalgia.

I cannot believe this consultant, who is supposed to be a leading light in ME/Fibro research etc, refused to see me for my ME because of the Fibro. Apparently, he does run a local Fibro clinic too, so now I have to go back to my GP and ask him to refer me to him there instead. Then again, is he going to say he can't see me there because I have ME as well as the Fibro??? :cry:

All I want is for someone to listen to me, take me seriously, and tell me that everything I'm feeling is normal and can be explained......and that they can at least advise me as to the best way to manage my symptoms.

Why is it that people with 'invisible' illnesses have to fight so hard just to get some basic support. :-x

Sorry, rant over. :oops:
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Re: Confused and Frustrated

Postby fibro-lu » Tue May 14, 2013 6:44 pm

Hi Purpledot,

sorry no insight there but hope you can sort things out quick and unbureaucratic (???)
if he is a LEADING LIGHT in ME and FMS research he should know how upsetting stuff like this is

give him a bit of that :face-slap: if it turns out that you will be seen literally in the same building with the same reception etc

all the best
Lu
all the best :cow-wave: Lu
Mind over Matter: in mind I'm Wonderwoman - in matter, well, - don't mind, doesn't matter
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Re: Confused and Frustrated

Postby denys » Tue May 14, 2013 11:36 pm

I think the ME clinics focus more on building up your exercise :?: :?: :?: :?: :?: not sure but my daughter has ME and she was encouraged to start slow and build up whereas most FMer's cant do that so maybe this is where the confusion is coming from plus ME isnt normally treated with meds. Maybe you are best trying to get help for the FM first and then seeing if there is anything secondary you could do to help your ME anyway :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: you get some help/clarification soon
Denys

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