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Discussion Starter · #1 ·
hi all
Been a while but am going through another flare and am so frustrated. Legs swollen, abdominal pain, joint stiffness and lost my voice which my rheumy says indicates that my lungs r involved. Pretty scary.....On 30mg pred to get me through next week but i dont feel a whole lot better after 2 days of treatment........ am so tired but cannot sleep...
Does anyone have suggestions? I am on pred, diuretics and thyroxine - feel awful and work not very helpful as they said i need to deal with this disease!!!
argh!!!
x e:(
 

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Discussion Starter · #4 ·
hello and thank you for your replies!
I have only been diagnosed a few weeks but have been ill for years. My consultant is currently mapping my bloods etc from past few years to come up with a long term plan. So i guess some of the drugs mentioned will be included. Although apparently my last set of bloods which were taken about 3 weeks ago, he said that that means nothing really in terms of this illness...
Voice still gone and breathing is laboured so feeling very fatigued - like an idiot promised someone i would take photos at a christening today and that over did it for me. I am just so frustrated with myself and my mind is willing but my flesh is weak!
Was very down today - the grass needed to be cut but i just didnt have the energy - i know i have to accept it but it is so hard as i want to be active and do all of the things i love like dancing and swimming but whenever i attempt them i get horrendous pain in my abdomen - and the cause cannot be determined...........
It is becoming increasingly difficult to paint on a smile to be honest........
Anyway thank you all for your support............
x e
 

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Discussion Starter · #7 ·
Thank you - hi to all - thank you for your advice re rest - i have been trying as much as possible but just finishing 12 days of work straight - really dont want to rock the boat in work as i need to work and cannot afford to loose my job. I took a couple of "personal" half days which did help. Still not feeling great though - just off the steroids and bloated and in pain again - so frustrating...... still have no long term treatment/management... They say patience is a virtue....
Hope you are all well
x e
 
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