Have a Q 4 you all. Has anyone any experience or knowlidge of the new probs i have.
After a good day yesterday I find myself messing up words in reading and writing, like saying the last bit of the word first a then the beginning. The same in writing. Alll very unnerving.
Generally feeling just not well but can't put a finger on it.
Also more shaking of my fingers and when holding a cup or pen one or 2 fingers have locked, but no pain with. Could loosen them with other hand.
Believe me honey, not unusual. My spelling & Grammar have always been excellent but some days I can't even spell the most simple of words & when reading sometimes the words kind of move about on the page & won't keep still (damn them!). I get the locking (with my fingers & toes) & in my case it's down 2 tendons, ligament & muscles (Connective Tissue Disorder) & it gives me the shakes which u can put down 2 many things. Don't forget, lupus can affect u're central nervous system, hence getting muddled easily. The other week I was in tears of frustration as I couldn't remember how 2 spell 'once' lol!
I know how frustrating and upsetting this can be My writing has deteriorated so badly. I hate having to write greetings cards as I can be half way through writing and completely forget what I was trying to say My shopping lists can bring me to tears when I can't decipher the items . Spelling ,grammar,words back to front,bouncing hand when trying to write. The list goes on lol. I have mentioned this a few times to my specialist and GP and I just get shoulder shrugs and that's it.!!!! I think it is simply brain fog that we 'lupies' suffer. My pain clinic doctor seems to think I have fibromialgia and I think he said that the brain fog can be related to that. Well I think he said it but I can't remember . Bring it up with your docs but in the mean time try not to get anxious about it . X
Two of my fingers have started to lock down too, and my writing is gradually becoming more difficult, so ursi you are not alone. All good wishes to you.
I am with u on this. I write a few sentences and my hand starts to ache so much. I now use moon pig or hallmark for greetings cards just so I don't have to right. I get words muddled up in speech and get easily co fused. I find I am.like this all the time not just in a flare and am worse when I am tired. Xx
Good moaning to you all, thanks for the messages.
Aren't the meds they feed us supposed to help all this? And if not, why are we swallowing all this stuff?
'Good Moaning' lol love it! Sometimes the meds do more harm than good, it's all about finding a combination that works 4 us personally & if u think about all the little intricate parts of our bodies & how each & every1 of us reacts sifferently, has different thresholds etc I guess it would b difficult 2 come up with something that would totally knock everything out. This is why I no longer take anything 2 help with the lupus (as nothing seems 2 work 4 me & I've reached the point where I think I'm doing more harm than anything else chucking all these things down 4 throat 4 no reason other than this is what they tell me I SHOULD take) so I just deal with the pain issues rather than trying 2 solve them now & it seems 2 work 4 me. As long as I'm able 2 basically 'function' now & have the edge taken off, that'll do 4 me :0) Don't apologise 4 being negative, get it out, emotions r a good thing 2 have, it shows u r human! If we all walked around with big smiles permanently etched on our faces we'd be locked up! Plus it would probably kick off my paranoia thinking every1 was plotting something sinister & we were living in some sort of freaky world ;0) Sending u big ginormous hugs ursi & manic grins u're way, 2day will pass x
Thanks cher. Got an appointment at the biggest specialist hospital over here on the 21st. Will keep in mind what you said but also open to suggestions.
At the moment I am not functioning at all and it is doing my head in so will have to try SOMETHING.
How long have you had this illness/es? I live on my own and could at the mo not manage a family. My hat off to you.
Strange that this has happened at my age (67) when I managed to bring 6 kids up plus work without any probs. Or perhaps I have just worn my body out!
Have had it near enough all my life but was diagnosed at 16 & that was only because I had a stroke, if that hadn't had happened it would've been left undiagnosed & I wouldn't be here now (more so due 2 the problems that had already occurred with my body rather than the lupus itself) & I'm 34 now so it will be 19 years next September 8th (I remember the date well surprisingly!). Apart from when I was first diagnosed, I've managed really well & apart from the odd blip here & there, been relatively unaffected by it all......until 2 years ago when everything seemed 2 kick off with a vengeance :0/ Sods law I guess. 6 kids? Goodness, my body & mind would've given up LONG ago lol! I do think it gets harder as we get older, general ageing problems coupled with the degeneration that lupus can cause is not a great combination & makes it so much harder 2 keep things on an even keel, plus if u live on u're own I can imagine it would make u struggle emotionally too but I believe u have a strong spirit, raising 6 kids is something I know I would never b able 2 do, healthy or not so I applaud u. It's so disheartening a lot of the time & it must be very daunting all of this at an age where u should be at the stage in u're life where u know what's going on etc but having 2 learn all about something new & working out how 2 manage & cope with it, I think u're doing really well, even if u don't THINK u r or FEEL that u r. Hopefully the 21st will give u some answers & put u're mind at ease, hopefully even bring some good suggestions or solutions that work 4 u x
I am so sorry. I don't have the finger locking but struggle cognitively. I find that when I write my words that are missing letters or I write them in the wrong order. When speaking I can't recall words (sometimes even basic ones). I have never heard this specific issue described as part of Lupus but It's very disconcerting.
People with APS often find their brain fog lifts significantly on warfarin. I guess this isn't routinely prescribed for lupus, but I wonder if it might help? Might be worth raising with Prof Hughes and his team?
Personally, speaking from over 18 years of experience of taking warfarin 4 APS & also having lupus, it is not the answer 4 brain fog. Let's not 4get it IS a poison. U need careful monitoring on warfarin when it's used 4 the right reasons & there r still risks involved & I must admit, I'd b pretty dubious about taking it 4 any reason other than 2 thin my blood. My INR is & has always been stable but I've still bled in2 joints & muscles, had clots & it takes 4ever 2 stop bleeding when u cut u'rself: I painted my bathroom red in the end as I got fed up with it looking like an abbotoir every time I shaved my legs. I STILL have brain fog, in fact I even ended up going in2 severe psychosis, seeing men in my garden waving at me, not being able 2 remember my Dad's name, how old I am, how 2 do things I've been doing 4 years, hearing things etc, etc so although the memory problems r awful (I DO understand them, believe me) there r far worse alternatives but each 2 their own & different things work 4 different people. There was a little section on here somewhere about tips 4 copping with brain fog (I myself put 'Post It's' everywhere & talk 2 myself if I need 2 remember what I'm going in2 another room 4 so I would try other options b4 even considering putting more pills down my throat.
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My writing has deteriorated so badly. I hate having to write greetings cards as I can be half way through writing and completely forget what I was trying to say 
. Bring it up with your docs but in the mean time try not to get anxious about it . X
Pains and fingers and toes
Blue fingers and lips!
Red fingers and red and white mottling, all under skin- comes on when hands warm up. Throbbing, swollen feeling and burning type pain. 
Lupus and blisters on scalp, palms and fingers
Rheumatoid arthritis 
