I'm pretty sure I'm having some nervous system issues. This last month has been sponsored by the letter D for Dizzy. I've been stumbling and shaking instead of graceful elegance lol.
A couple of days ago I caught a cold, and it wormed its way straight into my sinuses - now I have full on 'you're stuck in a weird music video' ....Vertigo.
Nursery thought I was drunk, and to be fair I was drunk. Except I'd not had anything to drink. The floor was receding and swaying like a ship's deck. The walls were receding away from me when I focused on them, my words were slurring their way out of my mouth, my face had gone rosy as you like, and my hands were shaking away like anything... I had to be taken to one side to offer up an explanation as to why I was attempting to pick up my daughter in this state. Luckily for me 'I'mmmm nnnoott dddrunk I've gggot luuupus!' worked!! But then we had to walk to school for the big two. Flippin' 'eck.
It's doing my head in. I would love the floor to stay still, I would love to be able to cut my food ok when I go to lunch for the first time in ages. And if the walls could stop running away that would be great.
I upset a friend today too. She had a hospital appointment for her littlest so I had to pick up her girls and walk them, with my three, to her house. She wanted to have a little party for her littlest when they got back - he's just gone two. It took her over an hour, by the time she got there I had to leave, I was about to pass out! She sadly does NOT understand about Lupus at all, I don't think she even gets what 'chronic illness' means, so she just thinks I was offended or whatever and snubbed her. When I got home I landed on the sofa and woke up 3 hours later... luckily my husband was here...but this fatigue is mental.
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Blueberry
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Hi Blueberry, first off look at any side effects your meds may have on you to rule your systems out. Vitamin B complex is good for your immune system. You really find out your friends are or NOT when you have Lupus...why not give your friend a leaflet on Lupus or give a few case studies to read and if she is a true friend she will invest in taking some time to understand your illness.
Thanks Gertie, a leaflet might be good! I still have my Lupus UK welcome pack, I could give her that! Good idea!
It's not the meds.... because I'm not on any my GP is waiting on my test results being sent across from one department to them, before referring me to Rheumatology and they've been lost (thoracic consultant tested me and diagnosed me with Lupus pneumonitis, obviously with SLE as well, as it's part of that). The further I move away from my big go on steroids a few months back, the sicker I'm getting.... I'm going back to have a go at the GP tomorrow test results or no test results I NEED my Rheumy appt.
I am sorry you are having these problems. A few years ago i started having terrible problems with dizziness and fainting. It turned out to be a group of thingx perhaps lupus related maybe due to medication (was on a clinical trial at the time for a lupus drug.) After reading your post and others it appears that lupus really does affect the brain more than we know. I think doctors are reluctant to deal with these issues simply because they don't know what causes thema nd they like to be in control, easier to pass it off. My expereince is that someitmes the dizzynesss is caused by poor blood pressure regulation and actually holding still for periods of time is bad, have to get up and move a round to get blood pumping back into brain. Sometimes some wooziness is caused by the brain fog, perhaps poor circulation, miniature stroke or inflamation somewhere (they thought I had Parkinson's for a while, but it wasn't, still don't know why I have tremors) and the third thing was vertigo that makes the room spin, called Benign Positional Vertigo, which is caused by calcium deposits in eustachian tubes in ear liquid (this is a simplification) Anyway, the vertigo is horrible, and the treatment is having some doctor move your head around in a certain way to get the calcium blobs (see I do have rocks in my head) to move around to a place that doesn't cause a problem. I swear when they do this I think all we need is a few feathers and some chanting and I could be in a shaman's lodge house on the reservation. The shaman would probably do a better job (but not take my insurance).
It's kind of depressing that the doctors aren't keen on linking the brain issues... I'm having to avoid mentioning them to my GP because they're just going to think I'm a crazy hypochondriac! I was hoping the Rheumy would be more supportive, now I'm worried they won't be lol!
Hello again BB...I've been off the site for a while, as I've had a bad flare (which included "the rocks in the inner ear" syndrome...it is a LOT worse than being drunk!) My GP is coming around to realising that I'm NOT a hypochondriac wimp and put me on Betahistine - which has thankfully dealt with the vertigo....I'm trying not to take all my meds at the same time, as there is a very real possibility that they will react with one another. How you are coping with all this and still managing with three kiddies is a miracle.......hope your "friend" takes time to read and understand why you are as you are.
Hopefully - you will have an appt with your Rheumy soon, and they SHOULD be "clued up" and have more time than your GP to discuss options for management of your symptoms. They usually have Nurse Practitioners too, that you can ring any time you need to.
My husband is very understanding and helpful - but I'm concerned that he is gradually taking over many of the tasks that I used to do before the SLE became a daily challenge - it doesn't help self esteem, even though I know I would do the same if our conditions were reversed. There's also the "4-walls" syndrome, as I do not drive, and cannot walk more than half a mile before getting exhausted, or my knees "locking".
Don't be too put off by this - as I am a lot older than you, and the SLE did not really start to limit my life until after I retired from work. I was also involved in an accident which damaged my spine - so it's not just the Lupus.
This site is so helpful...and it is heart warming that most people have a positive attitude, even while being honest about how hard it is, sometimes.
Totally totally feel for you on this one: me too, but thank goodness not since I early retired! I do agree with gertie & maddieroo
My version of this is as typically multidiscipline lupus as so many of my conditions: cause I had a bad fall on my head when 7 with concussion & 2 slipped discs in neck, all consultants decided my lifelong predisposition to dizziness/ vertigo was due to that. I'm 58. My SLE/MCTD was diagnosed in infancy, but i didn't know that till last year. Now nhs has confirmed and i'm on plaquenil 400mg alongside the antiinflammatory diet & supplement inc vit B complex etc.
In the '80s when my career was high stress I had the worst flare of the sort of vertigo you describe, couldn't stand up let alone walk, vvvvv weary, brain fog, slurred speach horrible scary, Vvvvv depressing. Off Orkney for months. Full ENT investigation: benign positional vertigo (they dumped water in my ears, horrible tests, but due to discs couldn't woggle my head around too much etc thnk goodness) due to virus giving labyrinthitis + issues due to arthritis in neck. Was put on motion sickness meds that made vertigo worse. Came off onto homeopath's bryonia for 18 months vvvvv slowly gradually the vertigo subsided. I let it all scared me silly which I'm pretty sure just made the flare worse. After that, when ever vertigo flared, as it did when ever I let myself get over excited or tired, I just forced myself to go lower & not get uptight bout it, go o sleep earlier etc. but the vertigo comes on when I over do anything...in the '90s they were testing me for MS....but now it isn't often i come close to overdoing stuff cause my bod is so fragile I simply can't do much of anything in a sustained way
Well, over the last 20+ years I've had ops on neck by pain specialist and have deep acupuncture & gentle exercises so neck is in pretty quiet condition, and plaquenil 400mg since last June has taken edge off neck/shloulder pain (as well is pain etc all over bod), and I dare to say it: these past 11 months have had less vertigo flares than ever. So mine is sorta a happy story so far o good. But I take nothing for granted
Sorry for going on and on. I guess I just want to encourage you to keep your grrrrreat sense of humour while being as gentle as poss and as cautious as poss when you feel these symptoms. I'm sure this is what you're trying to do, but you're life is so busy inevitably, with your young ones etc etc. my rheumy does think they are lupus related, but also have multidiscipline aspects. As we all know, lupus espec systemic lupus affects everything in our bods.
Re friends: if my experience is anything to go by: even real friends may need quite a lot of effort on our parts till they 'get' our lupus. Vit's taken me all year to help mine to do this. I'm glad I persevered....each buddy is showing a different reaction, and all their reactions are helping me understand a diff dimension of my lupus experience. Well, I've never been v social (too unreliable and fatigued due to undiagnosed lupus ha ha) but the few real firends I have are even more precious now I've given them a real chance to understand me as well as they can each in their own way. And I gotta add: thank god for you guys here on forum.: you've taught me what real real solidarity and friendship is about: I now relies just how reallytrulymadlydeply lonely & isolated I've actually been all these years due to lupus affecting my relationships
Ps: work, not Orkney! Off work for months.....my computer corrects my typos, so helpful, but I miss the mistakes when I glance over my heaps of reply.....argh
I read a thing from St Thomas's that said they believe Lupus to be mainly neuro/nervous system based, and the rest of the involvement is secondary. I wish everyone was on the same page!!!!
The forums are fab!
I have been worrying a bit about MS :\
Thanks for the awesome reply. It's good to get people more away about the brain issues!
That is good info about at Thomas study. I have been told lupus is all about the vascular system which of course affects the brain and nervous system because of athe importance of all those little veins. But, most GPs don't know about that. The other thing is, if a symptom isn't considered lupus related they tend to just ignore it. I remember my mother, who is a nurse (now she is 82) saying to a doctor when I was about 15, "okay maybe that symptom isn't lupus related but she still has it, what should we do about it?" Just becuase the don't think it is related to whaeever condition you have been diagnosed with doesn't mean it isn't real.
Yes I know what you mean when you say you are experiencing a 'nervous system flare' -I get similar symptoms too ; dizziness, vertigo, exhaustion and brain fog (sometimes I can't finish a sentence!!). When I get this type of flare I need the 'quiet dark room treatment' for as long as it takes. I've noticed that having a lot of responsibilities and things on my mind can trigger this, especially before my period.
I've had to learn how to tell people how unreliable my health is, and say no to their demands -which was slightly easier after diagnosis. but I find that people really struggle to understand chronic illnesses like lupus, even my mum and brother have struggled to understand. I think giving them a leaflet is a great idea. I would be very open with people about your health issues (I know this can be hard) but it's important to build support to help you, especially as you have young children.
The other thing I do to help my nervous system is to take calming herbs from my herbalist. he makes me a tincture and loose tea too, which I find does help.
I've not mentioned these symptoms to my rheumatologist yet, but I plan to on my next appointment.
Hi I also get flare ups before my period and was put on the mini pill to try and stop them altogether, didn't work though, I wonder whether oestrogen might help.
I am much older than you and have had many years experience with this disease. One of the best things that happened to me was consulting a psychiatrist who had done research on the way lupus affects the brain. She eventually zeroed in on the relationship between my flares and neuropsychiatric manifestations. These included not only headaches and fuzzy brain syndrome ( I described it as having a cotton head), but irritability and confused thought processes. My rheumatologist wanted to treat the mood disruption as a separate illness but the psychiatrist sent me to another specialist who confirmed that after treatment with prednisone I returned to “normal” ( for me that is still a rather unusual person!). My family concurs with this finding. I am fine, cheerful and productive when lupus is quiescent but one of the first signs of a flare is a disturbance in my otherwise cheery personality. In response to your post I have done some research to lend “expert” advice about this subject. Here is a link to a conversation that occurred at a Lupus Foundation of America event; the doctor is discussing the neurological complications of systemic lupus. I found the discussion very informative. Hope this helps. lupus.org/webmodules/webart...
can confirm that brain fog, memory lapses and unfinishes sentences/forgotten words seem to be common, my specialist linked a flare to these symptoms but I did find that increased fluoxotine helped some. Not great when teaching fulltime but have made it through the year so far.
Thanks very much for the interesting input! I'm with Maddie's mum- what are they going to DO about it! I don't give two figs if it's Lupus or random or whatever as long as it won't kill me....but they could do something other than ignore it (as they did today!)
LupusWriter - thanks I'm going to read that now. I had very severe post natal depression after my last child, I'm wondering really if it's all linked. It cleared one morning after taking steroids for a chest infection. Bang, and the PND was gone too....very very odd. I was suicidal with it, and losing hours from my memory (I'd 'come round' and have 'lost time'). Hmm. I guess I'll never know and can only hope it was a one time thing triggered by hormones!
I can't put into words what it means to me to have a chance to understand this better...after all these decades of coping, feeling so alone, and perplexed and downright low about these particular sort of symptoms
Ooh Barnclown, I tried to give you a high five last night but it's not here today!
*High five*
To Blueberry:
Blueberry you are fab. Your attention to descriptive detail is priceless! Spot on.
I am sorry you are going through a bit of a rough briar patch though. Carry on girl and keep expressing yourself to us to your doctor/s. It will get sorted somehow in some way at some point.
Just what is it that the 'others' (those without lupus) do not understand about the word chronic?!? Your 'friend' requires enlightenment / awareness and/or you deserve a new friend.
Definition of chronic : (of an illness) Persisting for a long time or constantly recurring.
When 'others' ask me about lupus I state that for me it relapses and remits - on/off - comes and goes - returning again and again and again ... it is something to endure. Hopefully enduring it while maintaining a sense of humor. Through laughter even the intolerable can be tolerated. Laughter is the best medicine. Carry on.
May we all endure. Adjust adapt overcome. On on on...
Yes! Swiss Cheese Brain Syndrome going viral! (my bad ... but ... I had to write it)
Laughter is like opiates ... does not cure but it certainly makes the pain less painful.
To Blueberry: Everyone has their own agenda/perspective. Your friend's agenda that day was focused on her two year old child (doctor appointment & party). Her perspective was perhaps more about being a stellar Mum than being a stellar friend of a friend with lupus. Usually best to forgive/communicate/inform/share awareness and move on. She is lucky to have a friend like you - and vice versa. Your children are mates. Best to keep bridges open.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
lol. 
Good idea! 
my GP is waiting on my test results being sent across from one department to them, before referring me to Rheumatology and they've been lost 
How often do you have flare ups?
What the picture doesn't show - a year later
How long did hydroxychloroquine take to work for you?
My friends ❤️ would you mind if I stayed a while 
