Exhausted, dizzy and out of breath: I've had a... - LUPUS UK


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Exhausted, dizzy and out of breath

Maya23 profile image

I've had a rough ride today. I seem to have had a reaction to eating a small piece of cheese and strawberries and yoghurt last night - I woke up from a nightmare after only a few hours sleep and couldn't get back off as I felt so unwell with stomach ache and bad aches and pains. Luckily I was able to rest this morning, but I'm still suffering with a burning red face, increased flu like aches and burning pains and weakness in my arms and legs.

The car broke down on the weekend and is in the garage today, so I was wondering how on earth I was going to get the shopping (no food in the house) and make it to my blood test appointment. It's that time of the month AND it was raining -all the odds seemed against me!I was lucky that my next door neighbours kindly offered to help when I knocked on their door and told them I didn't know what to do. He got the shopping and the she drove me to my appointment and I'm so grateful!!

I didn't have enough money on me for a taxi home, so I had to walk to the bus stop which was up a slight hill. I was so exhausted out of breathe and dizzy I had to take it in really small baby steps (the tortoise wins the race!), even so, I thought I was going to pass out in the rain as I neared the bus stop!

Does anyone else get this breathless & light headed feeling and of nearly passing out? I'm wondering if it's low blood pressure, particularly at this time of the month, and in the past I've put it down to being anemic. I can't seem to even take the stairs very well today. I don't think I've got any problems with my lungs. The blood test today to check for Vit D deficiency - I am hoping that it will show up how deficient I am and then I will feel better for taking high doses of it... that's my hope anyway.

13 Replies

Hi Dryad - in answer to your question ALWAYS! I have reduced my hours at work from 35 full time to 21 hrs wef 1st March 2012 - because of the shear fatigue, breathlessness, aches, pains and low mood because of the Lupus. Also the realization that one has to learn to pace oneself.lol!

I too get light headed, again if i did a little 'too much' the day before affects me like this and the breathlessness gets so stupid. ie bending down to turn the fire on - I came up gasping for air!

I have mentioned this time and time again to my Consultant and it is a mixture of the Lupus and med's. I am on 1500mg MMF (which had to be increased in March this yr by a further 500mg) - my breathlessness has go slightly worse since taking this higher doze and of course prednisolone now 5mg per day. Both of the side affects of this medication is breathlessness.

I am due to see my Rheum on Thursday - and will fingers crossed be able to decrease my steroid to 2.5mg per day - so to wean me off them. Hopefully this will help.

it is also the time of the month for me - and I notice that the more tireder i get - the more light headed, dizzy and breathless i get! I am also pre menopausel lol! at 40yrs - so this doesn't help!

It's frightening to admit that this bloody Lupus can knock you for six and there are days when I feel so old - my 72 yr old mum can run rings around me.

And if I hear, 'you look well' again! When inside you feel like S*@&e I will scream.

i bet your'e sorry you asked now lol! Sorry for the rant! Good job you have very thoughtful neighbours! Hope you start to feel loads better soon :)

Lulabelle x

Maya23 profile image
Maya23 in reply to Lulabelle

Thanks for your comments Lulabelle -so a mixture of lupus and meds...hmmm.... I'm not on much in the way of meds and I was hoping some new meds might sort this out!! lol! It's just fun fun fun with lupus!

I'll mention it to my consultant next week and see what he says.

I'm really grateful to my neighbours today , it also gave me a chance to tell them about lupus and so they understand me more now - it's so good to be understood! and I'm grateful for the support on this site too. Thanks xx

Hi there,

sorry to hear you are feeling so pants!

I suffer terribly from dizziness, light headedness and shortness of breath.

many a time i have to walk holding onto someone with tiny little pigeon steps because my legs have gone to jelly, i am so dizzy and i feel like I am going to pass out on the spot. i get short of breath from shouting up the stairs ( to save my legs) , i can't walk and talk, but some days are much worse than others.

I too am anaemic and have very low blood pressure, so do wonder if the symptoms are related.

The other thing i have noticed on here is the amount of people who suffer from a burning red face - why do we get this? my consultant is unsure whether it is a lupus rash because it comes and goes - any ideas?

Good luck and i hope you feel better soon :)

in reply to tiredmum

hello tiredmum

im interested in what you think about burning red face as i too suffer this on occasions (like now) my rhumey said he doesn t think its to do with lupus either and is sending me to see a dermatologist,mine always comes when ive been in sun even for a little while and with sun cream on, it can really get sore but never blisters but i can have some swelling with it to.

when i see my dermatologist (still waiting for app) i write a blog on what he says.


Maya23 profile image
Maya23 in reply to

I always assumed the burning red faced was a sign that the body was reacting to a trigger and had begun flaring -that seems to be the pattern with me. Triggers for me are always sunlight (however much I cover up and wear suncream) stress and hormones -and sometimes food -like saturated fats...

Im on prednisolone and MMF 500 bd and Tacrolimus amongst other meds. I too get very breathless just at going up the stairs and if i forget something and have to do the trip again then i'm in a right state! I get a tight ball like feeling in the middle of my chest, a tightness in my throat and my heart races and can become erratic at times, also shaky and dizzy. I have used my blood pressure monitor whilst suffering this and the readings were alarming, really high blood pressure, very high pulse rate, enough that i was at risk of stroke or worse and would have been blue lighted in to resus at A & E! All these symptons were gone within 10/15 mins, readings all at normal again. I need to mention this to my renal consultant who looks after me, i don't use the GP at all. I wonder if the MMF is to blame?

Maya23 profile image
Maya23 in reply to MandaM

gosh that sounds frightening! sorry you are having to put up with that. good idea to mention it to consultant.

I'm having a bad dizzy day today too! Infact I'm dizzier than a duck on gin, on a merry go round! I also get out of breath just bending down, and my heart races. At the moment tho I'm only just at the first stages of being diagnosed with an auto immune disorder so am not on any medication at all, so it can't be that which is causing my symptoms. I hope they do diagnose me soon though, because my back hurts so bad!

Maya23 profile image
Maya23 in reply to Angelcake

Hi Angelcake, I'm just on anti-inflam painkillers at the mo and I relate to what you say about getting out of breath just bending down!! What's that all about?!! I wonder if it's low blood pressure? ....I'm going to ask my consultant on Monday.

Hi Dryad,

Sorry to know you had such an awful day but glad you had a good neighbour who was able to help you.

I have been feeling very dizzy for the last three weeks and I actually went to see my GP yesterday. Before I went in I took my blood pressure using a special machine they have at my GP's surgery and it was showing my blood pressure was very low 125/65.

When I went in to my doctor she took it again using the old fashion machine and it was now normal she even took it with me standing up and it was still normal and did not drop.

Along with the dizzy spells I have been having Back and headaches so her conclusion was it could be a flu like virus that i have or even the fact that I am now reducing the Prednisolone. I have been on 20mg for over two years and since January I have been slowly reducing to now 10mg.

Because of the aches and pains I am now feeling very exhausted as I don't get a lot of sleep at nights.

I too get very breathless because I have pulmonary fibrosis and cannot walk quickly or too far.

Hope your car gets fixed soon.


I know this is from 6 yrs ago but on the off chance someone else reads it like I am doing. I was exactly the same. I still am sometimes... my ferritin level are awful these days. RBC is always fine. When I take pharmacy strength iron tablets, I feel much better. They take a few weeks to get going but they have definitely improved my health.

I never had these issues before my other symptoms became unmanageable but I got to the point I was passing out momentarily all day long and I’d find myself slumped on walls.

When I don’t take my iron tablets, regardless of my diet, I get sick again after a while

Maya23 profile image
Maya23 in reply to Kazwaz1980

Hi! I was eventually diagnosed with Fibromyalgia and chronic anaemia (my ferritin levels were so low I was given iron infusions in hospital). I’m getting light headed on standing up again though, so time to check my bloods again!

Kazwaz1980 profile image
Kazwaz1980 in reply to Maya23

Yip- as soon as I read it, I knew! Ferritin is too often overlooked. Glad you got sorted. I take iron tablets every day to prevent mine dropping. I never had low ferritin before all this. It’s defo a lupus thing for me

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