I'm flaring at the moment. I'm trying to get my head around how lupus affects the nervous system (is it CNS lupus?). My symptoms are:
- dizziness/vertigo/feeling drunk and swaying and staggering about
- slurring my words
- brain fog
- various types of nerve pain but particularly SFN (small fibre neuropathy) where the skin feels painful to touch
- burning tingling pains, mostly in my arms
- nerve pain seems to be linked to tendons too (it feels like they are tearing on certain movements)
- worse fatigue
I was referred to the neurologist last year for these symptoms but I cancelled the appointment in the end, and the Rheumatologist wasn't very concerned anyway.
Does anyone know whether these symptoms are something I should get checked out with a neurologist? I've heard that a lupus patient in my local group is getting an MRI for similar symptoms which got me wondering!
Thanks!
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Hi Dryad, I took get nerve involvement when flaring, example, affects my bladder and I am at the toilet much more, left arm movement seems affected and I also very much feel that drunk feeling when first going into a flare. It is worse in the morning. Can totally relate. I mentioned this to my GP last week but plan to discuss with rheumy at next visit. Hope you are ok? Are you still managing lupus with just an anti inflamatory diet still? x
Interesting that it affects your bladder. I got tingling burning sensations in my bladder a lot recently and I wanted to be emptying it all the time. Is this what you mean? I don't have it at the moment but it's a common symptom with a flare.
Dryad...have those symptoms past couple of days. The nerve pain down my arm jolts me. I wonder if it's a heart attack pre cursor, but nothing happens. I know it is nerve pain now. I have not found a solution yet....I get it in my legs, my feet especially. Tingling fingers right now. I need to research. I am seeing rheumatologist at end of July to discuss a couple of these things. I am also dizzy, off balance and wondering if I shouldn't be driving sometimes. Worried about my ability to brake in time when I am dizzy like that. Sorry I can't help. If I find something , I will let u know...feel better
Yes do let me know what your rheumatologist says about it. I too get those really sharp pains that feels like someone is poking you with a blunt needle. I've had them for years, and just got used to them, but I think I'll get it checked out.
Hi I've ad vertgo 2009.its not nice it's sceary when u don't no what it is .I was going to sleep one night and I felt like I was falling out of a airplane. I sat up straight and I still felt I was falling driving up a hill or down so bad. I got a hole in my ear that started vertgo of.wiv doctors help it went .then got burning braine .like hot boiling water pouring down yr braine .no help wiv my burning and I've ad it 6yrs. But reading about vertgo sounds a lot like the same.im getting tingly head makes me want to scratch my head then leave is soar.now my legs started to stiffen.walking to fast I fill God I'm gonna fant.i was on vertgo tablets God nos wat they was called but I was on um 5yrs wen I went to vertgo hospital Dotor said u shount bin on theres that long she toke me of um showed me how to do exises 4 vertgo it worked I still get dizzy or in a room full of people talking then I fill God I fill gonna fant or fill strange. Try and do vertgo exsisering it's easy and dose help good luck x
Sorry hun ant look on ear.well it head movement's look up vertgo exsisering. It's hard to say .but it dose help .try it give it a go. My vertgo bin since 2009 .it was so bad sceary. Now coz I got burning bloody braine I'm so in pain.no help 4 me wiv my doctors. Vertgo u got to no how to deal wiv it.like don't walk fast don't drive up hills or down wen u no yr vertgo bad .or crawred rooms takes me of balance. Don't be sceard .x
Hi im newly diagnosed but in the year before my diagnosis is too suffered with dizziness and the room spinning to a point where I would vomit. As these things do it has passed (touch wood) but during this episode (which lasted 2 or 3 months) my doc put me on Betahistine Dihydrochloride tablets which really helped to ease these symptoms.
hi, I also get similar symptoms.....feeling off balance, like Im drunk, dizziness (but not vertigo), tingling and numb arm, leg and feet, sharp random stabbing pains in arms, leg, feet, head and behind eye. . My GP sent me for a brain MRI 2 weeks ago and Im still waiting for the results. She didn't think mine was lupus related as she checked all my bloods which came back great with no evidence of inflammation anywhere and Im not flaring in my usual way. But who knows!! I'll let you know the results when they come back. GP also trying me on Betahistine for the dizziness. I think it helps a little bit!
Me too...I think.i'ts good you're asking about this & looking at it with your health team....close as poss...and Paul's lupus uk leaflet will help you get your head around this
For what it's worth, here is my experience:
when I started hydroxy 3 years ago, it barely improved my long time predisposition to a constant & flaring version of what I call my persistent vertigo/cognitive impairment/ chronic fatigue + right sided numbness & a sort of loss of muscle control cluster
Last year, three low dose 4 wk oral pred tapers were the v first meds that have ever reduced my version of this & prevented flares
Since jan 2014, I've been doing really well on daily hydroxy & myco, with myco even more effective at reducing this cluster of symptoms....and with less side effects than pred
But recently I went on the first real holiday I've had in years....I've been feeling too poorly to go anywhere I didn't know the drs & chemists etc....basically I paced myself carefully and the holiday went fine and it was a great relief to actually feel well enough generally to do it....but by the end of our week away, this cluster of symptoms was flaring and after getting back home I've had a fairly rough week & a bit due to this cluster of symptoms....feeling v tempted to take another pred taper to damp them down....but they are settling slowly, so long as I go vvvv gently & take 3 hour naps etc
So, to back track, In the '80s my GP put me on anti-dizziness meds daily but even so I was so dizzy I couldn't go to work for months....could hardly walk...unable to drive...& over those many months ENT put me through comprehensive clinic tests and diagnosed my vertigo as benign, paroxysmal & due to spondylosis + arthritis in my neck with top spinal joint synovitis...an ENT second opinion agreed but made sure I was weaned off the anti-dizziness meds cause prolonged use can actually cause the very symptoms these meds treat + they are addictive.... ok....so, I went back to pacing myself & lifestyle management...loads of rest, trying not to worry...eventually managed to minimise this enough to get back to work...
But in the '90s these symptoms got so bad that my gp had neurology test me thoroughly. - MRI of brain etc...they said I came up neg for MS....and I received no treatment for this cluster of symptoms....this was way before my SLE was suspected....
and 3 years ago, the baseline nerve conduction tests my rheumatologist did when my SLE treatment began came up normal....so far, as clinic appts have passed, the consideration of other symptoms has had priority...but soon I'm going to have to get my head out of the sand to ask my drs about this vertigo/cog imp/chron fat etc cluster...but I suspect the nhs attitude will be: why worry or look into it so long as lifestyle management + myco + pred help damp this cluster down...and at my age (60) I tend to agree...but because I've been suffering from this cluster since the early '80s, I can't help imagining it reflects the untreated progression of my version of SLE....and may have implications for the timing & intensity of whatever of cerebral deterioration colours my "old age"...argh
So, I am vvv much feeling for you, and would suggest that, yes, you should probably get the neuro tests done...but take heart, cause they may well indicate v little...and if they do spot something significant it'll be a good thing to begin treatment rather than allow unimpeded progression....
Re the tendon symptoms: I have global tendon tightening due to my SLE going untreated so long...spine & legs+ feet worst affected....my global ligamentous laxity disguised the advance of this tendon trouble, which has literally blighted my life. Again, hydroxy+myco+pred are helping with this! but most important is lifestyle management....a gentle pilates, yoga, tai chi stretching regime helps, + the Alexander technique & antiinflammation diet & supplements...But more recently it's 33 weeks (yes, I'm counting!) of rigorous daily physio that has got me standing & walking without terrible tendon contraction disabling me greatly (so, haha, I could go on this recent holiday)...so, if you haven't already, I urge you to see a skilled lupus experienced physio who can examine your tendon condition
Oh dear...I've gone on & on again...topics close to my heart
Wow barn clown you've had it rough in the nerve department! I certainly don't feel like my symptoms are as bad as yours have been.
Sorry to hear about your tendon troubles too. I only have the odd tendon pain and it doesn't feel as serious as yours as they don't tighten up and I only feel the pain occasionally.
thanks for your kind words, dryad. and thanks for asking this question
reading over this thread now, i think you've got some vvvvv good replies which i'm sure help many attending this forum, now & in the future
although there has been discussion of this subject before here over the years, the replies you've got this time seem especially constructive to me....and they v much help me feel i probably am understanding my condition and doing the best i can...as much as i wish none of us had any of this to deal with, it's good to know that quite a few of us are responding to these symptoms in similar ways. and just being given this opportunity to tell my story helps me to come to terms with it (plus is good practice for when i have to remind my gp &/or my rheumatologist about it in clinic, haha!)
i think you're vv well informed, are looking at your symptoms sensibly, and cautiously, while keeping them in perspective. your commitment to lifestyle management including diet & supplements, inspires me too.
Hi barnclown, I'm glad to hear you had a good holiday & I hope the after effects settle down very soon. Do you mind me asking what you mean by a prednisolone taper? Presumably not just a gradual reduction.
Yes. In my case, rheumatology gave v specific directions:
This was during 2013, my 3rd year in treatment for SLE...because I seemed to be v responsive to meds (either did v well or did v poorly), rheumatology tried me first on quite a low dose pred taper with dose dropping by 2.5mg per week from 10 mg daily, over 4 weeks. I had wondered if I'd do better dropping 1mg per week of a longer taper, but I was ok, so we haven't had to try an even more gradual taper
This sort of pred taper extremely promptly & effectively reduced my version of flaring neuro symptoms, down to a more bearable level...but the policy in my clinic is to 'avoid long term pred', and I am only allowed 3 x 4 wk pred tapers per year (unless there are exceptional circumstances). Because this cluster of neuro symptoms repeatedly flared between last year's 3 x 4 wk tapers, rheumatology offered me daily myco. I started myco in jan 2014 & got up to 1000mg per day quite quickly, which seems to be my therapeutic dose (gives even better results than pred, i.e. none of the manic grumpiness, and less of the increase in paroxysmal haematomas I had with pred tapers)
Thanks for your kind words. I think that neuro flare is letting up gradually...I do feel daily myco is making this recovery much much faster than such recoveries have been over many many years of these sort of flares
I'll be looking forward to what you learn re tendon tightening at MRILC....what part of your body is most affected? Vvv much feeling for you! Hope you'll let us know how you get on
I am really sorry to hear you are suffering at the moment. You are often in my thoughts as I continue with my anti inflammatory diet.
I had a sudden severe attack of vertigo about 2 years ago, which was accompanied by numbness down one side of my face. The numbness & dizziness persisted for many months afterwards & the various scans I had, thankfully, showed no abnormalities.
I was referred to a neurologist for further investigations, but a mistake was made with the paperwork & I was booked in with a neurosurgeon instead. Needless to say I beat a hasty retreat from him, although he was extremely pleasant & very dishy too!
Thankfully the numbness & dizziness did settle, although can still reoccur more mildly when my other symptoms are flaring, & often when the weather is hot.
I hope you can get to the bottom of this & get some help ASAP. But as some of the others have already said, it is often the nature of Lupus that nothing shows up in tests, even when the symptoms are as severe & frightening as this.
Bizarrely, I am also currently suffering from severe tendon pain, which leaves me almost immobile at times. I have only ever had it for short periods in the past, but this has been going on for over a month now. I wonder if it is something in the atmosphere or weather conditions that are causing us to flare at the moment. But that is by the by.
I have an appointment at Manchester Royal Infirmity Lupus clinic in a weeks time, so I am hoping that they will be able to help. I will pass on any info I get that might be useful.
Until then you will continue to be in my thoughts.
yes I'm still managing on my gluten free diet and I'm eating loads and loads of salad! I've upped my dose of anti-inflammatory herbs including turmeric. I think the flare is a result of the sunny weather combined with lots of stress from where I live (stressful situation with neighbours) and worry about my parents both being ill (my dad has been flirting with the edge of death since March) and my mum has been really ill with Rheumatoid arthritis. Having to look after myself and make space to rest and hide!! Take care xx
I'm very sorry to hear that you are suffering in this way. I do believe that you should be referred to a neurologist or at least discuss these symptoms at length with your rheumy as there are medications that will be able to help. Like others on this site I have been diagnosed with CNS lupus and prior to my SLE diagnosis was incorrectly diagnosed with MS. I like you suffer from pins and needles and neuro problems which have been put down to Mononeuritis multiplex, I also suffer from complex partial seizures, all these symptoms are worse during a flare. The medications I have been given, anti seizures etc do help I am also on mycophenelate which I find to be a great drug. So again, do get a referral.
Like Barnclown, I do pilates once a week which I have found to be extremely helpful with balance as it has helped strengthen my core muscles and make me feel stronger. I do an Australian, more athletic version of pilates called Menezes which means you actually feel as if you are doing something.
Good luck to you and I do hope you get a solution to your situation soon.
Thanks I had a look at that. It sounds really similar, but I am already strictly gluten free. I think it's the lupus that is causing the inflammation (and occasionally if there is accidental contamination from wheat crumbs in the kitchen). perhaps my gluten intolerance is part of the picture. I've only been gf for nearly 2 years so I wonder if the damage was done before that?
My Daughter was diagnosed last year after a year+ being really poorly she had brain fog sickness on moving around dizziness tingling muscle twitching burning muscles jaw pain that was unbearable for her, ear deafness on and off, they finally said it was connected to the Lupus once she was diagnosed! Now her blood markers have come right down she doesn't suffer from these symptoms anymore so I guess that says it all !!!
If the doctors havent yet tested for sticky blood/Anti-phospholipid syndrome - APS/Hughes Syndrome (all the same thing just known by different names), get them to test.
Lots of lupies have this overlap and it can be the cause if the dizzyness and some of the other symptoms. There is a Hughes community on health unlocked if you want to get more info
Thanks so much everyone for your helpful thoughts and advice. I am feeling a little less drunk today and managed to visit my father in the nursing home without driving off the road! And I talked on the phone to my brother without slurring once! I think it has helped using the 'quiet dark room treatment' as I call it, which as you can guess involves quite a lot of resting in a quiet dark room!
The burning and tingling has improved too, and my arms feel stronger, but I am going to take your advice and get it checked out because I know these seem to be the main expression of the disease at this point. I don't have any prolonged joint pain at the moment so that's great (just the odd niggle).
I have been tested for sticky blood and I don't have that.
I think if I'm completely honest, I've been a bit reluctant to get the nerve symptoms checked out because firstly they come and go with each flare and so only bother me some of the time, secondly, I feel like I'm not sure I want them to find something wrong with my brain and put me on horrible medication, but equally, if they find nothing I'll feel like a fraud and feel like I'm wasting their time!
I completely understand where you are coming from here, but believe you me your symptoms are very real. Look at how many people have responded to your email with similar symptoms! The fraudulent bit I understand in bucket loads and I'm not sure about you but from my perspective it comes from the fact that it took so long for me to get a diagnosis in the first place of SLE (4 years) and then the CNS also took some time (just because of tests etc). However if we don't push for a diagnosis we could be left in a dangerous situation. I understand your fear though, really I do, I'm still like that and was like that with a bout of pleurisy I almost denied I had it for two weeks but this attitude of mine (which again is understandable) left me in a worse situation. It sounds like you may have something wrong with your peripheral nerves and nerve conduction tests rarely detect anything on that level its mainly a clinical symptom if you know what I mean. Although there may be some thermal tests you can do which may be positive. Please do speak to a neurologist who has expertise in CNS lupus. Mx
Hello Dryad, Yes I get some of your list too. After tripping over my own feet a couple of months ago and landing heavily on tiled floor, I could not lift on right arm properly for several weeks. Eventually after using a TENs machine and exercising arm gently I am now left with shooting nerve pain down arm on waking in morning and arm will suddenly "jump" by itself at odd times. I sometimes get a twitch under left eye, and my legs will fidget when I'm sitting. Also confusion at times over getting right words out - or right spelling down on paper. So.... on a bad day the scene could be.......me sitting holding a drink, not able to speak intelligently, with legs fidgeting all over the place, right arm flailing about with drink flying everywhere, with left eye winking insanely. It can only be a matter of time before the men in white coats arrive with the strait jacket and take me off to the nice pink and fluffy cell...................
I often wonder how you are. sorry to hear you are poorly. I too have tingles/numbness in my arms and hands and lately my left leg. my tendons hurt when I walk and dizziness has always been a on/off thing for me even when not in a flare. I haven't any answers as such, I was diagnosed with fibromyalgia in feb this year and have learnt that both fibro and lupus have similar symptom's I havnt been given any clear advice from my rhuemmy or GP so I always read answers on here as they are a great help to me. sending you hugs xx
I think I'm similar in that these symptoms are often part of everyday with lupus, but because I'd had 6 months remission, where most of the symptoms calmed right down and I had more energy, I had forgotten what it's really like. Having them all come back was a bit of a shock and made me question whether I need to get them checked out.
Sorry to hear you also have tingling too. I guess it must be a feature of illnesses that cause inflammation. Sending hugs back xx
I have the dizziness and feeling drunk and slurring etc I was diagnosed with Mennierres so maybe get tested for that aswell I take Cinnarazine and it seems to help and I gave up driving as I felt I was a danger because I couldn't control when the attack would happen
Thanks for the info on wikapedia. I've now received my referral letter to the neurology department. I'm hoping I can get a neurologist who has knowledge of lupus.
I'm feeling really tired and dizzy today with slurred speech
Just thought I'd update you all. It was 3 years ago since I posted thsi and a lot has happened. An MRI on my brain found that the Lupus was not the cause, but showed that I have a small brain tumour (a benign meningioma). However my neurosurgeon thinks this is not the cause of my 'funny turns'! I was diagnosed with Fibromyalgia, which I am satisfied does explain some of the symptoms, but now I'm being investigated for possible rare sub-type of migraines which cause dizziness, numbness and tingling and weird things like that. I might also have retinal migraines but I'm still undergoing tests! I've been offered surgery for the brain tumour because I have been told that it will grow into my frontal lobe in future, causing seizures! So I'm trying everything else (Boswellia herb to see if it shrinks the tumour) before saying yes to brain surgery.
The only good news is that my Lupus is in full remission with negative ANA and low ESR. I've even been told by rheumtologist that it is considered "dormant"! So hurray for that
I have the same exact symptoms, as well as headaches and occasional seizures. If it’s caused by lupus it’s dounbtful that anything will show up on an MRI. Not really worth the trouble unless they suspect something else. I’ve been working with my neuro for about 8 years now. Honestly, there is only so much they can do. However, when my brain “fog” became really crippling she did do an EEG. Those results came back abnormal, which was both a surprise and a relief. Something about my delta brain wave activity was indicative of Lupus (and two other diseases, both of which were ruled out).
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