Worst flare up, can't cope please help!!! - LUPUS UK

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Worst flare up, can't cope please help!!!


Hi, I was diagnosed with lupus SLE this time last year when I spent 3 weeks in hospital bed bound due to my joint pain and extreme weight loss, head aches that made me pass out and a very high temp. I was then put on my medication felt better and was allowed home. I do have flare ups but at the moment I am having the worst flare up. I feel in the complete pain I was in last year when I was in hospital. I promised myself and my son I would not go back into hospital but I honestly don't know what else to do I have took all my medication I've even took codine ibuprofen paracetamol and morphine to try get rid of the pains but my joints are so inflamed and burning I can't really stand as my knees hurt that much I feel like I'm going to drop my legs are shaking. Please if anyone has any advice I really need it. I can not go back in hospital and I honestly don't know what they could do for me as I'm on all my medication. I can't sleep due to the pain because I can't get comfortable. I just wish it could get into remission and I could carry on my life. I had to give up my job because of my flare ups and my headaches made me pass out at work the doctors advices working was not for me ATM. Which gets me more down and depressed I'm just stuck in one big circle. Any advice would be great thank you x

7 Replies

Your age is a factor on the severity of lupus.

I am only 22 years of age and it just feel like this is gonna be my life for the rest of my life in pain

If your pain is not under control, it might be worth seeing your GP to see if there are any other treatments that could help. Have you been prescribed maximum hydroxychloroquine I recently had to double my dose and it has helped joints to stop hurting.

in reply to Chris21

I think I best go back to my doctor as I am on the highest dosages with all my medication thank you x

If one pain med stops working there are SO many different ones to use instead. Time to go back to the dr and shake up the treatments.

in reply to Charl1503

Hi. I'm sorry to hear you are in such pain... sometime it is so bad we stop thinking clearly. But you have to be your best friend and seek better treatment.

A flare is not "just" pain, is merely a symptom that your body is attacking itself and I will be brutally honest with you: this is your health you are dealing with, you really need to do something different to stop the flare than whatever is you are doing right now... you never know when SLE is hurting an organ. Drag yourself to see a GP if you must, or to a hospital if that is what your body needs, or change your meds (I'm doing great on cellcept).

You are too young to give up, there is a whole life ahead of you but you have to do what is best for you. Be brave, hugs!



Hi there

I am sorry to hear that you are experiencing these symptoms.

I would advise you to go and see you GP so that they can help you manage the pain and also advise you on whether you might need to see a consultant again.

More generally you might also find joining one of our support groups useful, so that you can talk to people who are experiencing the same issues. You can find the details of a local group on our website lupusuk.org.uk/regional-gro...

Let us know how you get on.

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