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Have any other Lupus sufferers had/got the following;

Loss of memory?

Spelling getting worse? (tho' was great before...)

Black outs?



Constant headaches?

Stomach problems? (eg, IBS/Candida/lots of bouts of Gastroenteritus)

Weakness/losing strength

Hair colour loss?

Close relative with ME etc?

Ear infections?

Swollen glands on neck?

8 Replies

wow what a list and but in a horrible way reasuring to me that someone else has a list too. (sorry).

Loss of memory, wrong spelling (and terrible writing) black outs and fits (now diagnosed with epilepsy due to cerebral lupus interference), headaches, stomach problems (due to pancreas failure due to long term use of azathioprine) and hair loss are the things I can empathise with (and that is not including all the usual lupus things!)

I actually get embaressed when I am asked (even by doctors) how the SLE affects me. Comments of "oh so it is you who are keeping the NHS in debt or you are certainly keeping the NHS staff in a job" have been known to be made which makes you feel even worse.

Keep your chin up - you are not alone. :-)


Thank you for your reply :0). It's great to be able to 'chat with other folk who know 1st hand what it can be like to live with Lupus..

Lol, i guess so...tho' that is just the tip of a list!!!

Ha ha, no worries :0), yes, it can feel 'comforting' to know that others have 'lists' too (tho' i'd never, ever wish for anyone else to suffer in any way, shape, or form!).

Ahh, i empathise with you too! (tho' my memory loss is not due to meds...hence i was wondering if anyone else had that symptom too).

I can understand your feeling embaressed, as i have with my family & friends when they've/they ask me how it affects i condense it! A LOT!!! lol (also 'cause i don't want folk maybe 'feeling 'sorry' for me!

Hey, if there weren't greedy folk out there that screwed up our food & water etc to make profits, then MAYBE we wouldn't be having to use the health system at all!!! so please try not to let those sort of comments get to you (maybe picture them with a silly hat etc on their head ;0).

Thank you :0), my chin is more up than down, as i reckon keep keeping positive, healthy, happy & laughing as much as possible, all goes a long way :0).

Chin chin :0) (& yes, we're never 'alone', never have been, never will be ;0)


hello:) I too suffer from memory loss which iam now begining to think could be related to the statins i take... i have recently found out statins can have adverse effects on people with sle... i also suffer from a lot of joint pain and sle has also effected my heart and liver.. i think we all have lists..:) xx


Hi :0), thank you for your comment. I'm sorry to hear that you too have memory loss, also your other symptoms. Yes, it appears that we do all have 'lists'! :(.

Sending you healing thoughts & happiness in each moment :0) xx


hi i also have memory loss i do find writing things down helps me now i also at this moment in time have very painfull swollen glands in my neck and am feeling alittle weak , i feel so tired and cauld sleep all day but as soon as i go to bed at night im wide awake. i was diagnosed last year but they say i might of had it a least 10 years oh the joys of lupus xx


I know the being tired then being wide awake feeling, my lupus is pretty well controlled by the drugs at the minute but my consultant has added in amitriptyline to help with pain and to help me sleep- it works!


Oh how releived am I that I am not losing my mind!!! My writing is appalling and I can get very distressed when writing and I simply cannot remember how to spell a simple word that used to roll off the end of a pen. However I havent written a list but I do believe I will now. It makes sense to see it all written down in front of you. So thank you for sharing your list



I have memory loss and am very clumsy (never used to be)

I am currently taking Amatripiline


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