Anyone with SLE have daily fatigue and dizziness?

[jennyall12]

Thanks for your imput ...

[Buffy14]

Almost everyone with SLE has fatigue it's one of the main symptoms .

[Sarahjj87]

Yes I have fatigue a lot but the dizziness is really hard to deal with. Am not sure if it's a symptom of lupus or side effects of the drugs. Due to all the steroid use my body has stopped producing steroids naturally and I did find my dizziness got worse until they got that under control.

[Runny in reply to Sarahjj87]

How did you get it under control

[Sarahjj87]

I had to start some different steroids which helped a lot.

But unfortunately I have been experiencing dizziness a lot recently.

Have you started any new tablets that could be causing your dizziness?

X

[Chanpreet_Walia LUPUS UK]

Hi Jennyall12,

Have you spoken to your GP or rheumatologist about the symptoms you are experiencing?

Fatigue is one of the most common symptoms of lupus, it affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here: lupusuk.org.uk/managing-fat...

[Wendy39]

Hello.

Yes. Fatigue. The bain of our lives. It's a tricky one. I was told earlier this year to take a walk, just a short one, 10-20 mins every morning, to help with my energy levels and improve fatigue in the afternoons. This of course is fine when I am feeling up to it, but the reality is that when I am flaring I cannot do this! I take the kids to school and all I want to do is go to bed - I am like a zombie!

When my lupus is under control I can walk.

It's as simple as that.

I think the advice was well meant and no doubt that is does help.

Plus we all know the increased health and weight risks of becoming immobile etc.

But fatigue is an integral part of lupus and I think it's a very personal thing. Only we ourselves can judge if we are up to gentle exercise, on a day to day basis.

I am lucky in that I started a new drug into my mix in June - Mepacrine, along with my MMF and hydroxychloroquine - and I have experienced a good few months - good energy levels too. I haven't napped as much or had the number of headaches I usually get. That being said, yesterday and today I have been in bed between the 2 school runs - completely shattered and a headache. But that's the nature of the beast.

I also get dizziness when my lupus is playing up. It's quite unsettling and I am afraid that I cannot offer any solutions. Mine is closely linked to fatigue, headaches and nausea.

Are you newly diagnosed? Could one of your meds be causing the dizziness?

Best wishes

Wendy

[Mandypandy1969 in reply to Wendy39]

totally agree with you Wendy. xx

[ava97 in reply to Mandypandy1969]

same problem.I m now on 4 mg steroids and almost all day feel fatigue sometimes dizziness also join with this problem and the horror side is my headche and warm feeling on head I m just 20 and really don't know how to manage.I have to cope with this tthe rest of my life..

[ava97 in reply to Wendy39]

hello wendy!!!

how u mamage with this headache!!??its really impossible for me.😫😫I cant tolerate this pain.all the time I feel like migrane types pain.I know if I have to deal with this I need to take steriods.I aam on 4mg steriods.I know if I take more than 5mg than maybe it will be ok.maybe 7 to 10mg will be ok...but taking steroids is not good...it causes lots of problem.so I m really afraid about that.

[Wendy39 in reply to ava97]

Hello again.

Sorry for delay in replying. I haven't been 100% this last week and it's been a busy time, typical. Had to spend Sunday in bed resting and feel that I have fallen behind with a lot of things.

I have suffered headaches all my life virtually. During teenage years I put them down to hormones and periods etc, then I got told I had eye strain when sititng for my GCSEs, in my late teens and early twenties I realised that if I didn't get enough sleep, or eat and drink regularly I would get headaches and so on.

I have been told that I have headaches, migraines, cluster migraines, migraines with myalgia - pain behind my eyes and in my ears, a tightening band around my head, tenderness to touch my head and sharp shooting pains down my neck and ice pick headaches at times too.

I have tried various pain relief etc. Basically when my lupus is under control, my headaches are less and are managebale with paracetamol, ibuprofen and sumatriptan (prescription only). These are available in 50mg and 100mg tablets. I now use the 100mg tablets.

When I am flaring and my headaches get bad, they can last for 6 weeks. The last one started in Feb, with a flare. I ended up being told by my GP (Rheumatology Department were no help whatsoever) that I needed total bed rest to get on top of the headache and flare. I was told to go to bed for 2 days min, preferably 3. My husband had to take over the children and school runs and cooking etc. I stayed in bed. I took the max dose of paraceamol, ibuprofen and also diazepam. I have taken codeine at times too (I had some at home following bursitis in my hip). With this drug combo and bed rest for 3 days, I did finally shake it off. But the whole episode lasted 6/7 weeks. It was horrendous.

I now see a lupus specialist privately and have new meds and a new treatment plan. Part of that is having steroids at home to self prescribe when I feel I need them. So the peace of mind that that brings is HUGE for me. I would never have to suffer a 6/7 week headache again - I hope. If I feel myself slipping down hill or have a headache I can't shift with sumatriptan, I can take 4 week course of steroids. 2 weeks @ 5mg and then a further 2 weeks @ 2.5mg.

My usual meds are hydroxychloroquine 2 x 200mg a day, MMF 3g a day & Mepacrine 50mg three times a week.

My diagnosis are: SLE, mild Reynaud's phenomenon, possible underlying Sjogren Syndrome, varicose veins, venous eczema, background hypermobility, with a history of eczema, asthma, migraine, allergies.

I hope I have helped a little. Headaches for me are one of my worst symptoms. The fatigue being the other.

Please let me know if I can help any further.

Best wishes

Wendy x

[ava97 in reply to Wendy39]

thankz a lot.its really helpful to know some good advice from a lupus patient.my doctor advice me to take 4mg steriods and again he prescribed me to take 2.5mg for next month then he will stop it.but I know if he sttop me taking steriods I will not able to move on.so I m thinking I will do like u did...

[Wendy39 in reply to ava97]

It's really important to get good medical advice for our lupus symptoms. To get the best possible quality of life we can. Please ask your doctors for further advice on headaches and drugs etc. But rest is crucial too.