Lupus

[Bensoncody1960]

Hello everyone I've just been diagnosed with Lupus I don't know a lot about it Havant been given any information from the hospital all I know is I feel so tiered & have no energy which I did think it was the menopause so hoping to find something out from this forum thank you in advance for your help xx

[heda123]

Hi

Welcome to the world of Lupies. Really the hospital should have given you some information. However the best place is to go on the Lupus Uk website and they have the correct information on there. Lupus is a very wide spectrum. People suffer lots of different symptoms. The main is fatigue, joint pains, headaches and the list goes on.

This forum is very good for asking questions as there are alot of experienced lupies here who have been through many trials and tribulations.

I have Lupus and antiphospholipid syndrome. My main symptoms are fatigue, joint pains, headaches, brain fog, light sensitivity, and fever. I was first diagnosed with antiphospholipid syndrome 17 years ago then i was diagnosed with lupus 7 years ago.

Anyway good luck and i hope you get the correct treatment.

Shaheda xxx

[Bensoncody1960 in reply to heda123]

Thank you x

[Chanpreet_Walia LUPUS UK]

Hi Bensoncody1960,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack that contains factsheets, guides, a list of helpline and a list of LUPUS UK contacts who you can chat with over the telephone. To download or request this pack, please click here: lupusuk.org.uk/request-info...

We published an article on our blog about managing fatigue which I hope you will find useful: lupusuk.org.uk/managing-fat...

Please let us know how you get on, wishing you all the best.

[Bensoncody1960 in reply to Chanpreet_Walia]

Thank you x

[Leave-me-alone]

Hey I felt the same way. But actually when I had more energy I read the booklet the hospital gave me and there are lots of information there. And then of cause this group, found it amazing for support. First time I felt like I fit in well lol.

[erksomewarrior]

i read several good books back in 2000 understanding lupus by dr graham hughes but for me by far the better book is the lupus book by daniel j wallace md

isbn 0-19-508443-8. be careful in sunlight knowledge is power the more you can help your doctor the better equipped they will be. keep asimple diary of health. are you still working at all. you may want to cut daily life into bite size pieces. happy to chat any time. lupus uk is good depending on your area you may have a local group. gentle hugs kathrine.

[Hidden]

The leaflets on this site are good to be getting on with. Overload isn't good and you don't know what applies to you yet. Pace yourself, rest and some exercise and listen to your body. All of us here are different. Theres some good advice been given, diaries, photos of your symptoms for the next appointments. Cover up in UV not just sun. All the best.