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View Full Version : So tired of this (literally & figuratively!!)



scarby
08-04-2010, 12:54 AM
I've been unwell for 6 years (to the month now!) and I'm so sick of it. Whilst I'm better off than when I started, it just isn't improving any more. Apart from the initial "improvement" after the first year where I went from sleeping 16 hours a day to sleeping on average 10hours, the last 3-4 years have been so frustratingly stacknent or if at all slightly worst. I'm here stuck, with pain, fatigue and no life. When I saw the specialist that dianosed with wit ME he said I would be turning the corner soon (that was early 2006) but I haven't and I'm sooooooo FRUSTRATED! Since then they've change the diagnosis to SLE (possible - still waiting for the full diagnosis as I haven't quite "met" the criteria yet) and Fibro. I'm 20 going on 21 but that's not how I'm living my life. They tell me that exercise will help but in the past I've tried it, it didn't really healp at all and by the time I get back to uni, I'm sooo exhausted just from going to classes & doing readings - and I'm only part time!

The rheumy has put me on Plaquenil but it hasn't improved things apart for some finger stiffness in the mornings. The depression has been treated so they can't attribute my symptoms to depression either! I just want to live a normal life - study, have a social life, work a couple of hours and play sports! I just feel at wits end with this and wonder whether do things stay as bad for this long? What can I do to improve my long term prognosis??

Angel Oliver
08-04-2010, 04:23 PM
OMG Scarby,

This thread describes me to a T!! I too was diagnosed with M.E then told Lupus and also waiting for that positive result and also have no life and totally fed up.I also am on Plaquinil and its only helped me a little been going on for years.
The only thing i can say is hang in there....DONT give up and keep fighting.This is what im trying to do.Doctors are difficult,well the ones i have and can be intimidating,but only YOU know your body.So dont just sit back with their diagnosis.Read up, come here n post, if you learn stuff mention it to your doctor like i have.When i first took ill in 2004 i was told it was a nervous breakdown....after constant fighting look what i found out.......I now know i have:-
Asthma
Fibromyalgia
Srjogrens
Raynaurds
Bla bla n other things.

So basically....keep coming here we will support you or try anyway.Know you are NOT alone and never lose HOPE.One day we will come here with answers.Many members here were just like us....they now found answers after many years of fighting.
Hope this helps if only a little.
Lots of love
Amanda.xxxx

scarby
08-05-2010, 01:16 AM
Thanks for the words of encouragement :) Can't believe you have the similar "diagnosis" history - if that even makes sense. I guess I've educated myself and read many bits and pieces - this is where my university studies help as having a background in physiology & pharmacology help in understanding more! I guess for me, I'm fortunate that my rheumy and GP are not highly intimidating but sometimes, I find I "chicken out" of saying/telling them things cause I don't want to be viewed as a hypochondriac. I know I'm not & I had a specialist tell me I'm not (not my current ones) but I can't help but think it though, that may be, after a while, they might just stop taking me seriously.

I guess that's only the icing on the cake. Here I am at 8:!5pm stuck on the couch too tired to do work.... again....

Sorry for the somewhat depressive rant - I'm just in one of those state of minds