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feel strange

hi everyone

i feel real strange cant work things out it this is taking ages to write this.

any one had this feel faint head is beginning to bang

all morning i have problems.

have had a mini stroke before and use to getting words wrong etc

but this is the worse i have ever been.

could it be the l;upus going to a new level?

i also feel shaky. any ideas? thanx

12 Replies

Nicky, I don't wish to be alarmist but think it might be a good idea if you phone NHS Direct and speak to a doctor: 0845 4647. It might just be the lupus but since you've had a mini-stroke before best to check it out. Hope all will be OK and that you feel better soon! oxo


You need to get urgently checked out for Hughes Syndrome, which some people with Lupus have... there is a forum on this platform, but also stay on this one for the expert Lupus support....they can tell you where to get help. Best of luck. Mary F x ps i have both.


i have brother calling in a min he has travelled far so cant phone yet, sounds stupid when i write down, gonna get up and go to back garden see what happens. will prob phone nhs

been checked for hughes dont have it. thanx for replies will be back when i work out what to do.

big hugs to both of you. xx


feel a lot better, still have it slightly strange feeling it was,

just got a banging heart now,

could be heading for something i guess,

thing is i cant stand hosiptals i hate having to go for appointments

just gonna take it easy and see how i get on over the next hour.

even when i had the stroke and that blood clot on the lung i did not want to go hosi.

maybe i should learn to like them lol.

thanx for your help before appricated. :) xx


Glad you felt better Nicky. I loathe hospitals too! Sounds like you might just have been overdoing things - easy to do with this wretched disease, especially at this time of year. Take care x


Nicky are you ok now? I hate having to go to hospital too even though i work in one! I pace the floors if im an inpatient, i'm so bored and its alien to me to be on a ward and not doing the work! Always best to get checked out though even if it turns out to be nothing to have worried about, better safe than sorry! Hope these strange feelings have passed and you're ok? Stress can also do strange things to you, i'm sure the worrying about how you're feeling can't be helping! x


It is quite possible that the lupus is affecting u're central nervous system (cns), however, this does NOT mean u need 2 panic, many people have it affecting their cns WITHOUT it actually being CLASSED as cerebral or CNS lupus. Lupus is a funny old condition that does funny old things 2 us (ok, it doesn't literally make us laugh!) but still mention it 2 u're Doc. I have it all the bloody time on & off, u don't feel like u're in u're own body sometimes, it's difficult 2 explain, but headaches which r absolutely SAVAGE, tingling sensations, pins & needles, numbness, dizziness, u just don't feel 'right'. I DO have APS, but regardless of that, lupus can ALSO do it 2 u & I know how scary it is as I too had a stroke years ago so u can imagine how freaked out I got when I started having involuntary limb spasms. Just take it easy and as always, mention any new symptoms 2 the Doc as Lupus & her bedfellows have a funny way of changing course sometimes, especially when we've got used 2 her. Sure she does it 2 confuse us all ;0). Also, check all the meds u're on 4 possible side effects. Good luck honey.


hi everyone xx

feel so much better today felt so ill, i went to bed early.

i do have cns lupus, sher did not think it could be that thought i was heading for a stroke

but with every thing else like the numbness [ which i had yesterday in left leg ]

and the limb spasms etc did not for some reason yesterday connect the dots.

when i wrote that was hoping sadly that some one else had,

had this in the past and it was just lupus.

lol manda at you hating the hosi and you work there, its classic. :)

i think its great you can work. hugs nicx


Hi, Glad to hear you are feeling better. I am being referred to the neurologist as I have some of the symptoms you describe : dizziness/fizzing sensation in the head, once accompanied with numbness all down my left side, bad brain fog and forgetfulness often accompanied with negative thoughts, muscles spasms, burning pains in arms and legs... I think sometimes it catches me out -on a bad day I wonder what the hell is going on- but later realise that it's just part of a lupus flare. I think lupus can effect the nervous system generally, and sometimes this gets you a diagnosis of CNS lupus, but not always. Not sure if I'll get that diagnosis.

It must be really scary having had a stroke, look after yourself and take it easy xx


hi tigerlily.

thing is hun i have not been the same since the stroke about 3 months ago.

so not being doing much and this past 2 weeks even less as cant walk feet killing.

have got ulcer in nose and other things going on

could be flairing :( hugs nicx


Don't 4get, it can take quite a well 2 recover from a stroke, I had mine 18 years ago & still have problems & some lasting effects from it now :0(


Try getting them to see if Marfan syndrome is in tbe equation. I feel like that nearly all the time. Good luck sweetkin n better new year to you. XXXXXX


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