NEW

[brown414]

HI IM NEW TO THE GROUP I FOUND OUT THAT I HAVE SLE LAST YEAR I HAVE A LOT OF PAIN IN MY HANDS AND LEGS AND NOW IM HAVING SOMETHING WITH MY BREATHING I WORK AT NIGHT 12 HOURS THIS IS SOMETHING NEW TO ME

[Treetop33]

So sorry to hear you are getting additional problems. I hope you can get to a doctor or contact your specialist centre. Are you in the UK suffering the heatwave? I've been having a lot of problems with that.

[Minnskimoo]

Hi brown 414

Sorry you are suffering too. I am as yet undiagnosed. Just had skin biopsy yesterday and awaiting some results and further investigation. All that said, I have had breathing problems from the start and everything else followed...it's very unpleasant indeed!

As treetop suggests, it might be the heat- as I too have been finding it difficult to breathe well (I do have asthma) and also it seems, silent reflux, that can contribute to my breathing problems.

A 12 hour night shift sounds pretty tough on a hot summers night in general...working a shift of that duration when feeling under the weather must take its toll.

A GP visit sounds a good start, and hopefully that will help you find some relief.

All crossed 🤞🏻

[misty14]

Hi brown

Welcome to this forum, hope you find it helpful. Sorry your having added problems since being diagnosed with lupus. Did they put you on treatment?. Are you due a consultant visit?. If your GP isn't very helpful you might like to see if you can bring a Rheumy appt forward by a cancellation !. It can work. You may have to re- think your working hours as 12 hour shifts are tough with an illness like lupus. Citizens advice can help with a benefits check to see if you could financially manage and would help you claim !. They have a good website citizensadvice.org.uk with helpful links to other organisations. As the others have said you may be getting added symptoms because of the heatwave which hopefully will change today and tomorrow!. Keep posting and be better soon.

[Lupiknits]

Welcome! You will find a lot of information, support and many friends on here x

[Paul_Howard Partner LUPUS UK]

Hi brown414 ,

Welcome to the community. I hope that you find this site a useful source of support and information.

Have you discussed your breathing with your doctor to see if any investigations need to be carried out?

We have a blog article about pain management which you may find helpful. You can read it at lupusuk.org.uk/pain-managem...

If you need any information about available support and your rights in the workplace, you may also find our employment guides helpful. You can read and download them at lupusuk.org.uk/working-with... or if you need physical copies posted to you, please just send me a private message or email [e-mail] with your name and address.

[Su1112]

I've been having A LOT of breathing problems too, which is not normal for me. I was praying that my lupus wasn't attacking my lungs... and thank God, it's not. But my DR quickly prescribed me an inhaler (ProAir RespiClick). He thinks it's the heat.

I'm so sorry to hear you were diagnosed with Lupus SLE. My hands and hips are in chronic pain always from my Lupus SLE. Try to stay out of the heat as much as possible. I wear long sleeve linen shirts in the summer with a Tee. Hats, and sunglasses. The only time I'm out of the air conditioner is when I'm walking from my car and into a building, lol.

Try to take advantage of early mornings and dusk. That's when I sit on my porch or go for little walks, if my body is up for it.

Praying the best for you.

Su

[brown414 in reply to Su1112]

Thanks went the doc today and did nothing about my breathing sometime I just don't know

[Leave-me-alone]

Hi brown414 and everyone

I feel for you and going through exactly the same, only into the 3rd weeks of being told I got lupus. Been in pain the the last three months. Not forgetting the welcome present of DVT lupus brought me. Cut the long story short both of my ankel / foot is in extreme pain.

I visit the doctor or a&e every other day trying to understand what is happening to me and if is normal

Rheumatoid number is on speed dial, but they just tell me to go to a&e. GP depending who I get some would tell me to sit through the pain / some are very helpful. I managed now to get a rheumatoid nurse helpline which is a bit better. I am clueless to what is happening to me which is the worse of the illness of course not mentioning the pain that comes with it.

I was working overseas, had to give it all up. The pain makes me so tired, I can't walk. As I thought I was getting better another pain will develop. Reading up on the start of SLE I decided is best to take a 6 months break to get to know my Lupus.

Take care.

[Sheole]

If I overdo my breathing becomes sore. With every breath. If I rest for a day or two it goes away. Then I try to be kinder to myself & take it easy. Just my experience. Do have the dr check our your breathing issues.

[Dan30cr]

Hi there

Sounds like we suffer in similar ways... I had breathing issues feeling short of breath and sharp chest pains. They did many test and found no heart or lung problems. They eventually suggested it was actually a build up of stomach acid that was causing the pain and shortness of breath...

Hope this helps