I have two types of lupus.. discoid and SLE. When I do get the energy to do something I pay for it later! I take plaqunil and do my best.

[thekid71]

I hurt all the time no matter what! No one understands what I'm going through.

[dgleds]

many many people don't even really know about lupus at all..or know very little.

[russell]

I very sorry you feel like that. Lots of people do know about lupus. I have lupus and yes it does hurt all the time. Speak to your doctor, perhaps he could refer you to pain management. Hope you feel better soon.

[jeevan05]

Hi Russell the pain should be controlled..see ur gp my joints hurt but more in the morning. during the day you shoul be able to manage with a little pain im 39 was diagnosed with lupus this year..take care

[LupusAdmin3 LUPUS UK]

Hi thekid71,

I'm sorry to see that you're so down at the moment. Do you have a good relationship with your GP? I would recommend making an appointment with them and letting them know how you feel at the moment. They may be able to provide some additional support for you. If you have a close friend or family member that you can confide in then I would recommend it.

If you need to talk, obviously, please continue to use this forum, but please also get in touch with us if you'd like somebody to talk too. We have contacts that have lupus themselves so they can understand and are there to listen.

Take care,

Hayley

LUPUS UK

[thekid71 in reply to LupusAdmin3]

I'd like to talk with someone who is about my age and knows what I'm going through too.Preferably a female.. thank you... Allen

[Thaddeus]

Such is our lot. Hang in there.

[thekid71]

I have a great rheumatologist who diagnosed my Lupus 4 yrs ago. Lupus isn't the only medical problem that I'm dealing with at the moment. My mom and brother call me Job..because of all I've been through and my unshakable faith in God!

[Elle-26 in reply to thekid71]

Ive only been diagnosed this year ... everything has battered me... Im now under both Dermatologist and Rheumatologist, Ive got Discoid Lupus with Systemic symptoms ... ive just been diagnosed with Arthritis and have Bakers cysts on my knees which are painful ... Yes, no one understands not even my GP ... he just looks at his screen to see when my next appointment is with my ologists ... Im on strong meds and have a children and still on JSA as had to give up my career due to collapsing (investigation found Lupus) .. Im now waiting for MRI's for my spine and head ... Im in pain all the time .. even though I take strong pain killers .. it seems never ending :/ But my faith in God gets me through every day -x-

[thekid71 in reply to Elle-26]

Elle-26 Don't let anyone tell you there's nothing that can be done. If someone does.. go out and find another Doctor! Most Docs don't care or want to mess with Lupus..period.I'm constantly in pain but I know there's a reason for it. My faith in God keeps me going regardless. God bless you...

[Hidden]

I know where you are coming from. I am told every day to take it easy by loved ones. If you followed advice to rest when needed, I would never get up in the morning. I seem to rush around trying to squeeze as much in as possible before the enevitable crash! I just pump down the pain relief and manage as best as I can. Obviously I'm not that able bodied but like you, I hurt whether I'm resting or not. Not advising you do as I do, but I certainly sympathise as I'm the same.

[thekid71 in reply to Hidden]

I rest when I have to but like you said if I rested every time I wouldn't do ANYTHING! I crash often so I do what I can when I can. I leave it up to God because there is a reason why I'm suffering the way I am.

[Hidden]

I have to say that I don't share the faith but it is a big support to you and many others, so who am I to judge. I have heard it said by my religious friends that " god gave you lupus etc.., because he knew you could cope with it". Keep on your journey which ever way you choose and I wish you the best.

[madmagz]

Hi I have both discoid and S.L.E. and have been greatly improved since I was told that the symptoms are triggered by UV lighting which also means low energy light bulbs and florescent lighting so watch the lighting in places that you spend time in. I cover up most of the time and use a sunblock or at least factor 50 on my face. Yes I get warm when the weather is good or it is hot indoors but it is worth it to keep my skin in one piece and the other symptoms at bay.

Good luck

Madmagz x