Wishing everyone merry Christmas.: Hope everybody... - LUPUS UK

LUPUS UK

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Wishing everyone merry Christmas.

Nanuuk profile image
3 Replies

Hope everybody has had/is having a wonderful day.

Love & light to all.xx

Mandy.

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Nanuuk profile image
Nanuuk
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3 Replies
Olibop profile image
Olibop

Same to you darlin wishing you health and happiness xxx

kyliesinead profile image
kyliesinead

I am new to this site, so not really familiarised myself with how to best use it. I am wondering how many people who are now diagnosed have been through what I am experiencing. I am being investigated for a suspected connective tissue disease due to a low white cell count, in particular low lymphocytes, mouth ulcers, joint pain and swelling, fatigue, acid reflux and eye problems. Because I am not positive for any of the antibody tests, I am being told this is Chronic Fatigue Syndrome. I am frustrated as I have had to reduce my hours at work to four days and 'tiredness' just seems to be a lame excuse. People don't understand the extent to which these symptoms plague me. The doctor says it will either show itself or else disappear. Meanwhile I am in limbo. This has been going on for about 2 years and is getting progressively worse. Anyone share a similar experience?

bam1993 profile image
bam1993 in reply to kyliesinead

I really do sympathise with you, I was diagnosed with 'Fibro' for many years-just kept getting worse and worse-until I had mouth ulcers and couldn't eat-then had more bloods done-and finally they found I had Double Stranded DNA-in my niavety I thought that our DNA would always stay the same-but apparently it does change!!! But.....we know our own bodies, we KNOW when we are really not well-so I just kept going back and going back-once, when I pointed out to my G.P of 30yrs, that I seemed to be at the docs every other week, (I used to go about once a year) even (jokingly) said he thought I had ' taken a shine to him!!!!!!!' If I had the strength I would have punched him!!! (now have a different G.P!!) Was finally diagnosed with Lupus in Feb of this year.

I too have had to change my hours and position at work-and I wish I could tell you that I am now okay-but for me, some of the meds have not agreed with me, and am now in a really bad flare, that even the steroids do not seem to be helping (I am going to ring my Rhuemy nurse tomorrow)-just hoping I will be able to complete my 3 days at work next week. But we are all different and I know we just have find the right medication-I just try to keep hopeful, and get a lot of comfort from this site-where as everyone has been there-they understand. Keep strong-YOU know that something is wrong with you-keep going back and eventually something will show-up!! Take care and wishing you well and a better 2014!! Juliex

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