Does anyone else get wobbly and disorientated during a flare up? I get worried looking down even something as simple as an escalator....

[Jaxqueline]

[Lupie_Sal]

I have just started to experience this after 6 years since diagnosis. If i stand up too quickly i get dizzy. Not sure what its all about but you are not alone

[Jaxqueline in reply to Lupie_Sal]

Thanks. It's always good to hear other people's experiences. Take care.

[jonesy1]

I have only been going through the diagnosis process for a year and so far the medications have not got it under control but still trying. I often get jelly legs and a swimming head which makes me feel like I am going to collapse but so far I have managed to either sit down or hold onto something to prevent it happening. i have had these for a bout 8 years but they are far more frequent over the last 6 months but so has my general condition been worse so i think it goes together for me too.

Sue

[Jaxqueline in reply to jonesy1]

I only have it during a major flare up, half of it is more the fear of falling and unsteadyness. Take care.

[ALOMA in reply to jonesy1]

Hi everyone - Praying for you all to have good days and better health!! I also get jelly legs and a swimming head - sometimes is really bad - mine is also been worsening and becoming more frequent since I had my brain haemerage in 2007.

[Sue2803]

Yes, I get very dizzy and wobbly, just have to try and make sure I get up and move slowly until it settles. Have fallen several times, broke my arm. x

[luupysue]

Ihave been dizzy since I was 8 years old (now 53), at first I told the drs and my mother about it and was told they couldnt find anything wrong with me, so I kept quiet. Guess I have had this brewing in me for all those years, I appologise now if this is the wrong ting to say but in a way it kinda feels good knowing I havent been imagining it I always laughed it off in my teens saying I was just a dizzy blonde, feel stupid now as sitting here typing and crying

[trufflington in reply to luupysue]

You're not stupid at all and please don't ever think that. There just wasn't enough known knowledge then. <3

[Jaxqueline in reply to luupysue]

Hope you are feeling happier now? It is always good to know that other people have experienced what you have. Take care.

[Heather3005]

I was badly affected by dizziness, disorientation, light-headedness for many years and was often made to feel like I was making it up as no cause could be found. Then, a diagnosis of SLE and started on medication. Three years on, it has not gone completely but much, much better.

[Jaxqueline in reply to Heather3005]

That's a good positive thing to hear, what medication are you on?

[EOLHPC]

Yes: me too. I've been managing lupus since birth, but specific diagnosis and treatment only started this year. In childhood my version of this predisposition to vertigo/ dizziness began but only stopped me doing things like going on fun fair rides! Then in my early 30s when I got promoted at work & was juggling a lot of balls in the air, and also got remarried (ie at a time of high stress & strain) I had a bad flare during laryngitis virus which turned into 3 months off work with vertigo. It was awful: could hardly get off the sofa, was so dizzy. Was put on anti seasickness pills which were no use and if nothing made it worse. Only thing that sorted it was rest and trying to keep calm. Since then any time dizziness up I figure I'm overdoing things and make myself go much more gently even than usual. I really feel for all you guys: there is nothing fun about feeling this way! But at least now I know my undrlying prob is lupus, and that others like me have this predisposition to vertigo: feels goo not to face this alone

Take care

[Jaxqueline in reply to EOLHPC]

Thanks good to hear input. Take care.

[MandieR]

OH MY GOODNESS!!!!!

I dont mean to sound nasty but I am thankful that other lupies have the same things going on as i have had, as for some considerable time I was made to feel like a hypochondriac and wasting drs time.

I cannot clearly remember the reason why but i ended up being sent to the royal hammersmith hospital for a TILT TEST.......it was not a pleasant test but it did give me yet another diagnosis of VASOVAGAL SYNCHOPE'

which gives you vertigo and also makes you pass pout, loose your balance, dizziness etc so maybe it is worth you all going and asking for this particular test. As I said it is really not a pleasant test as they tilt a table that you are strapped to and they tilt it until you loose consciousness, but it does only last briefly and the results come very quickly. Since being diagnosed I have been treated with various meds and now very rarely have the same feelings as i did before

stay strong and happy and heal;thy my friends xxxx

[Jaxqueline in reply to MandieR]

Don't like the sound of that test. Was it worth it?

Take care.

[Jude65]

Over the last 18 years of diagnosed lupus I have felt wobbly and 'drunk' for much of the time. In between that I get very short spells of room spinning, only for a few seconds. Nobody can find out what is causing it but my rheumy thinks the balance system in my ears is damaged by the lupus. I find it very disabling. I too cannot go down an escalator and feel safer if I walk next to a wall or a person. Walking in an open space is the worst as I feel that I will fall over.

[Jaxqueline in reply to Jude65]

Could they not come up with any suggestions to help?

Take care

[Jude65 in reply to Jaxqueline]

No there is not one simple answer. At one stage using a stick helped a bit but I don't need it now. I am having physio at the moment for my knees and to strengthen my gluteus (bottom) muscles and my quads. Its making me feel less wobbly so I am pleased because even if I go 'off balance' I can right myself more easily (I hope so anyway). Keeping calm helps and not drinking strong coffee!

[Jaxqueline in reply to Jude65]

Great! That sounds fairly positive.

[tiredmum]

I didn't realise so many of us suffered with this awful dizziness!!! I have not been able to go out by myself for over 3 years now as the dizziness comes on so suddenly andI fall over, or walk into things. Add this to the jelly legs and the exhaustion and I become a walking (well shuffling) disaster area!!!!!

Unfortunately though I haven't found anything to help. I have tried to focus on one thing in the room which eventually stops the room spinning.

Just another symptom for us to learn to live with

[Jaxqueline in reply to tiredmum]

Sorry to hear that, hope things improve. Take care.

[Annette53]

Wow, this full-head, drunk feeling is lupus? None of my doctors have believed me when I say this is happening. I walk into walls, can't stand up straight most of the time, walk with a cane because of mobility problems....it really makes me upset. Talk about the stares when you go out...Is there nothing to be done for this?

[Jude65 in reply to Annette53]

I have found that the doctors don't really understand how awful this is because they have not experienced it personally. But it is so debilitating.

[Jaxqueline in reply to Annette53]

What does your Doctor say?

[ALOMA in reply to Annette53]

Thats whats so awful about many of our ailments/conditions - no one believes us or takes any notice (medical nurses and doctors) - I have had this full head, drunk feeling since my brain haemerage - so sorry to hear about yours and everyone's problems but so nice to have these groups where you hear about everyones problems and then realise that other people are experiencing the same things......

[EOLHPC]

I wish none of us had or have this problem, but boy does it feel amazingly good to discover so many of us can understand about this dizziness.

Like mandieR, in the mid '80s, when my dizziness first got so very bad I could hardly stand up let along walk, I was sent for tests with a NHS ENT specialist: really awkward uncomfortable stuff tilting me around and something else involving water being forced into my ears. The verdict was: benign non positional vertigo caused by a virus giving me labyrinthitis and complicated by arthritis in my neck. It was totally confusing and complicated. I was told I was lucky not to have tints ot menheirs disease (sp?)

At that point in my life, the doctors were oblivious to what i now know were obvious signs my autoimmune system was in trouble, but they knew I had spine trouble and that I often got laryngitis badly. So, my feeling was, they tried to diagnose 'something', and got me on those seasickness pills, which a private ENT specialist later told me can actually give you dizziness long term. By then I too was so depressed & so at my wits end, that I thought life was over.

Believe it or not, the thing that made me brave enough to just totally give up, stay home and vvv slowly get over the dizziness was a kind homeopath who took me serIously and got me to take a bryonia tablet 4x a day for several years. Probably this was just a placebo, but who knows. At least it made me feel an 'expert' cared and believed I could get over the dizziness.

Well, after sitting on the sofa at home most of the time, and only walking with a cane if at all, i did manage to go back to work after 3 months of those homeopathic pills. but only part time at first, and then it took 2 years of being vvvv careful and gentle with myself before I had a day without dizziness at all. Ever since I have watched myself like a hawk: any sign of any dizziness and I SLOW down even more than ever: and I bet all of you know how vvvvv gently & slowly I have to take life anyway due to lupus etc etc. So, now I am 58 but feel as if I act like I'm at least 78. People say I look great, of course. That is the way this condition is, isn't it?!

Sorry to go on & On like this. It's just I never thought I'd find anyone who understood about the horror of this dizziness, and now here you all are! And it feels amazing, this solidarity and empathy

Take care everyone, and thanks for asking the ? Jaxqueline!

[saartje]

Sorry to join the chorus of others, i have nothing new to add but it's SO nice to know it's not just me. I had to hold my daughter's arm going down the steps at school prize giving last week, and often have a reeling, tipsy feeling (also get labyrinthitis from time to time which is the pits) it is sad but good to know i am not alone! I feel for you all... so glad this question was asked. I will mention it to my consultant next time. Thanks for the homeopathy tip too - definitely worth a try.

[suzyq100]

This so rings a bell with me, so far I lost my balance and fell in a pond, fell backwards putting washing on the line and trappled a couple of people in a shop losing my balance going down two! Stairs! Only yesterday I fell sideways across the counter at marks and spencers, I tell people it's like trying to walk in a straight line whilst on board a ship in rough sea! Looking for work as a stunt woman! xX

[Jaxqueline in reply to suzyq100]

Thanks, not good for you but makes me feel better. x

[chrisj]

My mum gave me a walking stick because she said I wasnt "walking straight" and needed it for balance....I hadnt noticed it so much but she had!! For several months I've been having swimmy feelings in my head, mostly when sat at my pc, I assumed it was blood pressure but now I'm wondering if its SLE. Thank you Jax for querying this and to you others for answering xxx I had no idea so many people were suffering from this debilitating illness...These blogs have been an eye opener...