Is it just me?: just tell me if I'm just weird but... - LUPUS UK

LUPUS UK
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Is it just me?

suzannah16
suzannah16

just tell me if I'm just weird but I wondered if this is a type of neuropathy. I look at things and my eyes tell me one thing but my brain says it is something else. for example; I play mahjong online with sea creatures on the tiles. one my eyes tell me is an octopus but my brain says it is a lobster. This seems to be happening with other things too and I wondered if it is like my brain telling me my foot hurts when there is nothing hurting my foot.

19 Replies
oldestnewest

You have told your doctors I hope?

suzannah16
suzannah16
in reply to PMRpro

no, it seemed too strange to mention to them

PMRpro
PMRpro
in reply to suzannah16

I think you should. Though even the explaining it must be really difficult!!

suzannah16
suzannah16
in reply to PMRpro

now you've got me worried, is it something you've heard of before?

PMRpro
PMRpro
in reply to suzannah16

No it isn't - but it isn't "normal" is it? And when it is strange it needs looking into. Even if only to be told it is fine!!

Hidden
Hidden
in reply to suzannah16

It could just be brain fog or software issues relating to your Fibromyalgia and autoimmunity.

But whatever, Pro is quite right to say it definitely warrants describing at a GP appointment.

To reassure you - I don’t have this exact issue but I do have another strange one of getting lost often unless there is signage or windows. Increasingly I don’t know how to exit a room or where on earth to head after leaving public toilets - I’m going to need to leave tracking arrows for myself soon!

GPs and nurses and even the rheum have had to direct me which way to turn when I leave their consulting rooms - embarrassing! I blame my neuropathy and fatigue. Brain MRIs haven’t shown anything beyond damage done (non progressive white matter) so far so hopefully yours will be similarly dismissed. X

suzannah16
suzannah16
in reply to Hidden

that's me too. nurses usually take me to the exit and I go the wrong way coming out of shops. I did wonder if it could be fatigue, as it is the one thing I can't fight, pain no matter how bad I can either ignore or give in to it but fatigue just wipes me out. wondered if it might be connected to fibro. Ok Dr's appointment then.

Hidden
Hidden
in reply to suzannah16

Definitely a good plan 👍🏻

happytulip
happytulip
in reply to PMRpro

I agree with PMRpro, just because we have lupus doesn't mean everything is caused by lupus.

Oh god am I struggling with something similar to the point I think I’ve had a stroke!!! Brain fog is definitely one of my big problems but it is extremely worrying on a few occasions I’ve been asked to do something, I go and do it but apparently I never did do it 😳 I’m totally convinced I did do it ! I’m just left walking away questioning if this is really my reality!!!

I can’t go shopping in store anymore, I have to do it online because I’ve no idea what I’ve gone there for when I get there and spend stupid amounts of money on stuff I don’t need .

It’s a horrible strange feeling

I write lists but I still miss items or forget the list. does make me panic at times.

Your not alone. I’m due a full mri soon.

The worst I did was drive onto a dual carriageway the wrong way 😲. Sometimes I wonder if it’s my eyes but I wear glasses. I really have my money on just being completely exhausted and nothing too sinister.

I love how others share their symptoms on here , it’s good for some reassurance and to not feel so alone x

I agree with PMRpro & HT: tell your medics!

All my life i’ve had a version of this sorta crossed-wires stuff, but it’s tended to be habitual eg i ALWAYS call green yellow & left right etc even though i know i’m getting it wrong...this has gotten worse as i age, meaning i call more stuff by the wrong words A LOT...

guess i’d better tell my medics too!

LOVE your shaggy highlander...another funky artistic composition!!! Please keep posting these: they give me a BIG BOOST each time

XOXOXO Coco

Hello, I typed a long reply but then it went missing - blame the lupus brain 🙄😂

I get this and had it right from the start of getting lupus but it took me many years to pluck up the courage to talk to the drs about it as it just felt too weird and embarrassing to mention. Mine is possibly more extreme than yours although you mention it happens in other things too.

Does yours get worse/ only happen when you’re flaring?

For me, when I start getting ‘an altered sense of visual perception’ it usually hits at the same time as normal lupus flare and extreme fatigue (the fatigue is always much worse when it’s a brain flare for me than other areas) confusion, cognitive difficulties etc (about every 6 months on average for me). Mine is now diagnosed as neuropsychiatric lupus, NPSLE (sounds scary but it’s just the new word for any brain/ nervous system involvement caused by the lupus and up to 80% of us will have some brain involvement although may just be mild depression, headache or brain fog etc) and the medications really help, especially rituximab, and steroids are quite a quick fix for me but obviously yours may be different so is always best to tell the drs all your symptoms - even the embarrassing, hard to explain one’s 😬. I’m now really open and it has really helped my acceptance by the fact the drs tell me it happens to some of us with lupus and it’s very different from a mental health issue like schizophrenia as we usually know that what we’re seeing is different from what other people are seeing (or the reality!) and it’s very quickly controlled with the right drugs.

Mine tend not to be outright hallucinations but ‘real’ objects morphing into something quite different in my mind (and I also thought it was my eyes going wrong at first!) so when I was really ill with the lupus last year I was convinced someone had put a dying baby in my room, I could very clearly see it then when I got up to pick it up, it ‘turned back’ into my wastepaper bin!! 😱😂 In another bad flare I told a workman he had a very sweet dog 🐕 then when I went to stroke it, it was a coil of tubing?! His face was very funny about it and we usually all laugh at it now - but it’s only recently that I’d even consider talking about it because I thought it meant I was going crazy. My rheumy and neurologist were great and said we shouldn’t feel any embarrassment, shame or guilt (I felt I should be able to control it as it’s my brain and I’m quite a control freak) and that it’s just part of the disease for some of us, like joint pain or kidney disease and we can’t help it.

If yours is worse than you’ve said on here then it may be that you need more meds/ immunosuppressants? I didn’t get any brain issues for nearly a year on a combination of rituximab, steroids and methotrexate but the lupus reflared in various parts including brain now I’m due rituximab again and tried to reduce steroids too far. Although most people with lupus get some mild ‘brain fog’, if it’s quite bad - getting lost, very bad memory, confused, forgetting things etc that can be a sign of the lupus directly affecting the brain and can all be controlled very well with the right combination of medications.

My MRIs are clear even in a bad attack and there is never any permanent damage which the rheumys say is very typical of this type so although it’s scary and weird - it’s also quite positive as it’s very treatable.

Thanks for raising this, it’s very brave to raise the weirder things that happen to us so we can all learn from each other. I’ve been thinking for a while I should share my experience in case anyone else is worrying and not opening up about these symptoms but hadn’t quite plucked up the courage because it still feels a very weird thing to tell people!

My top tip which might not be relevant is that I find touching the ‘morphed’ object quickly turns it back to normal, fine when it’s my dog or a bin, a little more difficult when it’s a strangers face or when it was my rheumys shoes (that my brain has morphed into them looking very strange and about 5 times bigger than normal feet) when he’d called me urgently into clinic. He filled me with steroids and when he saw me the week later told me I’d been very unwell and asked if I’d remembered seeing him at all and what we’d discussed. I said I mainly remembered seeing his weird feet!! I found it funny but he didn’t... maybe I have given him a complex about his feet now 🤣

So it’s clearly not ‘normal’ for your brain to change what it sees but it does happen with lupus and a lot of what happens to us with these autoimmune diseases is not normal anyway - no different that it’s the brain having a bit of a weird reaction than when it’s the joints, skin etc (that’s what the drs say and I tell myself 😬🙂)

You may be better speaking to your rheumy or neuro about it first rather than a GP though as they will probably not have the experience. We have a set written plan from my rheumy now about what to do at every stage of brain involvement which has really helped manage it so when I start getting confused/ lost/ muddling up words we double steroids, if I get altered perception, I take 40mg and when it hits badly and I’m a confused zombie 🧟‍♀️ I go into hospital for IV and it all rectifies quite quickly. I get full remission between attacks where my brain/ perception works completely normally but that may be the steroids - as when I go below 7.5-10mg my brain now very quickly reacts badly so I have very reluctantly agreed with my rheumy that I’m on a minimum of 10mg forever.

What meds are you currently on? Some medications can cause weird perceptions/ hallucinations etc too.

Xx

suzannah16
suzannah16
in reply to Melba1

thanks for writing such a long post it can't have been easy. my "hallucinations" are not as bad as yours but are somewhat similar. I usually see things in my head rather than in person, although I did once say to a woman her jack Russell was aggressive when I meant feisty. I am currently seeing a therapist [who is a psychiatrist] and mentioned to her that when I try to sleep I get a lot of random weird thoughts whizzing around in my head e.g. purple snow, neon orange guinea pigs, green rhino. my brain just seems to be overloaded at bed time with random junk. the only tablets I have that are not vitamins are hydroxy and fluoxetine. may be the fluoxetine as I have only been on it a few weeks or could be related [?] to the neuropathy pain I get in my feet, I guess that means my brain is affected in some way. fatigue is a big problem for me all the time so that is another possible, I find it very hard to concentrate for more than 30 minutes on anything. or I could just be crazy :)

Definitely not crazy! It will almost certainly be part of the disease or drugs. I like your orange guinea pigs 🙃 but not helpful when you’re trying to sleep.

Interesting you get neuropathy in your feet at the same time. My brain involvement always starts with bits of me going numb at night (like I’ve been lying on a hand/ leg etc but takes longer to shake it off) and a tingling, fuzzing feeling in my legs and hands - like my blood is made of lemonade is the only way I can describe it.

Did your therapist say anything helpful about the weird thoughts/ images?

Was the lady offended to be told she had an aggressive dog?! 😬😂

I’d say if you’ve got neuropathy, cognitive impairment like with the concentration difficulties (concentration, attention and memory are the main parts impacted by lupus) and the altered perception combined with severe fatigue you may need to talk to your rheumy about some stronger drugs to get it under control and have a better quality of life? Have you got a good rheumy who listens? I’m so lucky with mine, really feel like he’s on my side doing all he can to fight the disease and always right there to help when I get ill.

X

suzannah16
suzannah16
in reply to Melba1

psychiatrist is not saying anything at the moment just asking questions and writing things down, rheumy it's hit and miss, I think when it's something she can help with she's ok but if she knows there is nothing she can do she won't even order tests. The lady with the dog didn't look too happy. as for the neon guinea pig, who knows how that got in my head. perhaps it was genetically modified.

😍 Stunning photo! Is it the work of Photoshop??

My aunt has a similar thing - eg one eye doesn't recognise the remote control. That started after some short-circuit event in her brain wiring, so maybe it is neuropathy ?

Like Barnclown, if I'm giving someone road directions, I'll point left, knowing it's to the left, and say right, knowing what I've just said is wrong....it doesn't happen in German (lot of tourists round here)...pretty weird, but that's what I am! 🤪

I've started writing 'write' when I mean 'right' etc...that's a fairly new thing, could be advancing age 😵

Definitely worth mentioning to your GP! Does it happen when you're eating? If you were eating octopus would your brain say 'lobster' even with all the other senses coming in to play ? 🤔 🤯

You're fascinating, go on, add a bit more to your profile! 🤗 🤩 xxx

suzannah16
suzannah16
in reply to eekt

photoshop, ha I wouldn't know how to. No she just came over the hill as I stood there. I do look at things when shopping and call them the wrong name, I dare not come back with the wrong thing as I get mum's shopping too. fascinating hmmm maybe the psychiatrist will write a paper on me :)

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