Extreme Fatigue

[Leelee64]

Hello all This is my first appearance on here 😆 I was just wondering if someone could give me any advice? I was diagnosed 5 years ago with discoid lupus and suffer with horrible lumps and bumps over my body, also fatigue & joint pain. I cope quite well and am still working full time but I am feeling so tired lately and seem to experience "brain fog" a lot. I have been taking DAPSONE every day since diagnosis. I haven't had an appointment with a specialist for nearly 2 years. I'm 53 years young 😜. Any tips on overcoming this fatigue feeling would be welcome.

Thank you

[gg317]

is it true that dis lupus eventually becomes syst lupus? if so, that may explain worsening symtoms

[Paul_Howard Partner LUPUS UK in reply to gg317]

Hi gg317 ,

It is uncommon for people with discoid lupus to develop more general systemic symptoms. Studies have indicated that this tends to occur in around 5-10% of people with discoid lupus, but we would advise anyone with discoid lupus who develops new symptoms that they are concerned about to discuss them with their GP or consultant.

[sandra222 in reply to Paul_Howard]

Hi Paul

I must be one of the 5 /10 % as i have both. The professor at Leicester Royal said it is Rowells Syndrome. I was diagnosed over 20 years ago. Thankfully with the right meds its all under control and has been for many years.

[Chanpreet_Walia LUPUS UK]

Hi Leelee64,

We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. The contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. To download or request the pack, please click here: lupusuk.org.uk/request-info...

Almost 90% of people with lupus experience fatigue making it one of the most common symptoms of lupus. We published an article on our blog about managing fatigue which you can read here: lupusuk.org.uk/managing-fat...

90% to 95% of people with lupus will experience joint and/or muscle pain. We published a blog article on ‘pain management’ which you can read here: lupusuk.org.uk/pain-managem...

To find out tips on how to manage ‘brain fog’, you can read our blog article here: lupusuk.org.uk/coping-with-...

Have you thought about contacting your rheumatologist’s secretary about not having an appointment for nearly two years?

We published an article on our blog about ‘getting the most from medical appointments’ which you may like to read here: lupusuk.org.uk/getting-the-...

Please keep us updated, wishing you all the best.

[Leelee64 in reply to Chanpreet_Walia]

Hi Chanpreet, still no appointment unfortunately. I did have one but they cancelled a few days after they sent it. I have been back to my doctor and she has written to them again. Still waiting to hear though. I think it's one of those situations where I just keep slipping through the system. I've been so busy being mum, nan, partner etc and worrying about everybody else that my needs seem to have taken a backseat. Hopefully I will hear back from the hospital soon. Xx

[Chanpreet_Walia LUPUS UK in reply to Leelee64]

Hi Leelee64,

Thanks for the updated.

I am sorry to hear that they cancelled your appointment, I hope you get one very soon. I do suggest ringing the rheumatologist's secretary regularly to ask for cancellations which you may be able to attend - its always worth trying!

[Lula76]

Hi Leelee - I too have discoid but suffer other symptoms as you describe. I've found that no doctor takes these seriously which is disheartening and wearying! I'm on hydroxochloroquine which is supposed to treat both systemic and discoid - sadly I have found that I really need to push to get appointments and to be listened to. Discoid is about so much more than just the skin! I would ask to see a dermatologist again and insist on blood tests to check systemic involvement or ask to see a rheumatologist. Sorry I can't be of more help! All the best L x

[Cindymc]

Hi. I have lupus and I also experience the extreme fatigue. I have questioned my rheumatologist and he said that unfortunately there really isn’t anything that they can do about the fatigue. It’s really disappointing and frustrating and to me it’s harder to deal with than the pain. Wish I could have a better answer for you.

[Cas70]

Hi Leelee - I have discoid lupus and sjogrens - before I was given Hydroxychlorequin they put me on Vit D and also B12 in spray form - it really helped. 2 sprays of Vit d daily and same for B12. I was advised to drink lots of water too. However I would also insist on a referral to a proper Lupus centre and get new tests. Good luck

[Leelee64 in reply to Cas70]

Thank you Cas. I am due to see my doctor next week and will mention the sprays you have said. I am prepared to try anything! I've recently changed jobs and within days felt ill xx

[Leelee64]

I have voted but how can I share the video on Facebook?