LUPUS UK Live Virtual Seminar - "Lupus & Fatigue" - 6pm (GMT) Wednesday 18th November 2020

[Paul_Howard]

Hi everyone,

If you are able to, please join me from 6pm (GMT) this evening for the next in LUPUS UK's series of Live Virtual Seminars.

This evening I will be joined by guest speaker Dr Chris Wincup to discuss "Lupus & Fatigue" and then answer questions from the audience.

You can register and join the free virtual event at lupusuk-virtual.org.uk/home

Don't worry if you're not able to watch live. The event will be recorded and made available on the site very soon afterwards.

[Kevin53]

Thanks Paul. Looking forward to seeing you and Chris this evening. Best wishes Kevin

[LalSD]

Thank you Paul. Registered... Best wishes, Lale

[whisperit]

Thanks Paul

I wont manage it live, but will be very interested to view it later x

[Paul_Howard Partner LUPUS UK in reply to whisperit]

Great. If you have any questions you would like asked, you can submit them on the site in advance and we're going to our best to cover as much as possible for this important topic.

[whisperit in reply to Paul_Howard]

I guess the obvious question (apart from 'how do you make it go away!) is what's the latest understanding of the physiology of lupus fatigue?

[Paul_Howard Partner LUPUS UK in reply to whisperit]

This is Dr Wincup's main area of research, so I'm sure that he'll be covering what has been learned recently.

[Summerrain14]

Thanks Paul, I’m signed up and looking forward to this seminar.

[svfarmer]

Drat - only just seen this at 6.20pm will have to see it on the site when it’s on x

[Wendy39]

Thank you so much Paul and Dr Chris. This was very worthwhile. We all want that elusive anti fatigue pill! Best wishes, Wendy

[Meg52]

Sorry to have missed this Paul, I’ve only just seen the post.

[Laurajoy]

A very helpful & engaging event Paul. I found it very helpful, It’s certainly expanded my understanding, thank you. Laura

[Summerrain14]

Really enjoyed the seminar tonight too. Many thanks for these seminars, really good to help gain more understanding of the complexity that Lupus brings with it at times. Reassured me that I am doing all I can with the pacing and gentle, small amounts of exercise too. Really informative and have just downloaded the booklet when an employee has lupus. Gail x

[Muff20]

Hi Paul thanks so much for the talk last night. Although I didn't hear about a miracle cure (always hopeful), it was very reassuring to listen to a professional who most definitely understands how hard it is living with debilitating fatigue with this illness. It would be brilliant if all the Drs I have come across during the 7 years of being so ill could also be so understanding and knowledgeable about this condition. I was also impressed that there was equal respect for every diagnosis including those without diagnosis and those of us who are told by Drs we don't know and given UCTD as a diagnosis. Often we are seen as not so seriously ill just because Drs don't know. Other Drs could learn so much from Dr Wincup. Thank you again. I will definitely be signing in for the other seminars.

[Wendy39 in reply to Muff20]

Hello Muff20

I thought this was a great talk and yes, we could all do with a Dr Chris Wincup when dealing with lupus fatigue!

It's not just rheumies and doctors dealing with our lupus that don't get it. I had an assessment at home by a general physician appointed by an insurance company, it lasted 3 hours in my lounge. He did not get lupus at all. As I did not have kidney involvement or other major organ involvement - just fatigue, muscle, joint, tendon issues, bursitis in my hip, chronic migraine and headaches with myalgia in eyes and ears, brain fog, mild CNS symptoms, blepharitis, skin rashes, photo-sensitivity, malar rash, etc etc, he told me that once my three children (aged then 15, 14 and 11) had left home, there was nothing stopping me returning to work full or part time and therefore my claim was rejected - on a non lupus expert opinion - he'd also spent 30 odd years as an army GP.

I was so upset at the time. The whole thing was so stressful. I replayed our conversations over and over in my head for weeks afterwards. I wrote a letter arguing and quoting reliable evidence etc. Made no difference.

But I often wish I could make him listen to these kind of talks so that he wouldn't treat anyone else the same way in the future.

We have such a lot of work to do to raise awareness of these symptoms that aren't considered serious by doctors but that change our lives forever, it seems that it doesn't matter whether or disease is active or not, lupus fatigue is crippling!

Best wishes

Wendy

[Muff20 in reply to Wendy39]

Wendy39 it's rediculous how many people including Drs just think one day we can just make ourselves well again! I haven't been able to work for over 5 years and never claimed benefits and it's that attitude that stops me. So difficult if the Drs themselves don't have a clue. Not sure what the Dr would say to me as my two eldest 28, 30 have left home and married. Just got the youngest at home. So my life has in theory got easier and easier as I have got sicker and sicker. At 53 I am losing hope of ever getting back my old life and getting back to work. If Drs think we can just cure ourselves with will power we no longer need Drs and hospitals. For my family it's generations of woman with the same symptoms and now my daughter age 16 has huge problems. I watched my Mum deteriorate, I am watching my daughter and all when I feel too ill to help. One day if they get personal experience they may finally realise. I am exhausted fighting medical professionals.

[Wendy39 in reply to Muff20]

Muff20,

Tell me about it! It's the whole invisible illness thing. How can we move things forward? I have battled over and over and it's exhausting! My efforts are mainly ignored.

I have never claimed benefits either. I am lucky that my husband can support us and I've never had to put myself through that whole awful process, not devised for lupus and/or invisible illness. I read posts here about that and my heart aches.

I totally get your concerns for your daughters health too. My 3 all worry me one way or another. Dry skin. Headaches. Reaction to UV light. Recurrent UTIs. Etc. My eldest told me his leg was very painful the other day and it felt extremely cold. I always think, oh god, they are heading the same way as me, I was like that as a child etc.

It's "interesting" piecing things together with hindsight, as I didn't think too much of my childhood illnesses etc, but my mum says that I was a sickly child and never made it to the end of term, I was always exhausted and missed the last day or two. Then there's a very bad bout of whopping cough and eye surgery etc...It all fits now looking back, which doesn't help when you're children start showing similar health issues.

So the awareness and education and research and progress with meds, is for them for the future, it's too late for us!!! I'll never get back to work. I'm 46. I can barely stand at times and can be bent over when I rise from the sofa or chair, I can't focus for long and fatigue is beyond! How on earth I'd work is a mystery to me. I can barely run my house at times.

Thank goodness we are all here and able to comfort eachother.

Best wishes

Wendy x

[Muff20 in reply to Wendy39]

Wendy39 I definitely am with you all the way with all you say. I am feeling quite low at the moment, I have been at home for 5 years. Struggling with my breathing and unable to do much at all. No one so far can tell me why I can't breath when I move but it stops me doing anything. I am loosing my fight🤔 I have fought for 7 years to get treatment and now I am fighting for my daughter. I am not sure I can keep going😕 joining these groups has definitely made me feel that I am not alone but I just wish I could feel more positive but it's very hard when being alive is such hard work 😕

[Wendy39 in reply to Muff20]

Bless you. You sound really down. Do you have much support? How about your GP and Rheumy? If you've been struggling to breath for that long, have you been referred to see someone?

[Muff20 in reply to Wendy39]

Wendy39 I am down, been ill for so long and it's hard to keep going. I have had 3 separate lung tests and now heart scan. They just tell me everything is normal. I haven't spoken to my rhuematology consultant in 18 months. I get a test then nothing for a year. My life is just being thrown away. They think I have a muscle condition and want to do a muscle byopsy but won't because of covid. I don't think I will ever get answers or a cure but after 7 years it's just hard keeping going. My GP is lovely but they can't cure me either. I am just exhausted.😕

[Wendy39 in reply to Muff20]

What area are you in Muff? Are you close to a Centre of Excellence? Just sounds like you need more from your doctors. I know most are not getting help with lupus right now but even my local rheumatology team are doing telephone consults or if necessary asking people to come in. Do you have a Rheumatology Helpline or a Rheumatology Nurse, that you phone for help? Sorry for all the questions, just wondering what can be done to help you. My care locally hasn't been good and I now see a lupus expert in London privately, but I know lupus can be a very lonely place when no one is listening to you and you feel you are getting worse.

[moondance]

So good to listen to someone who really understands the terrible debilitating fatigue of lupus. Thankyou so much for organising the event .

[Melba1]

Sorry I missed it, do you have a link available yet please Paul_Howard?

[Paul_Howard Partner LUPUS UK in reply to Melba1]

Hi Melba1 ,

We're just in the process of finalising the video recording and hope to make it available later today. I'll post on here when you can go and watch it.

[Hatelupus]

Thank you for organising the webinar yesterday. I found it very informative ,looking forward to the next one!

[MrsMouseSJ]

Thank you, Paul. I have only just seen this (not been up to much at all of late due to - fatigue!) but will catch it once on the site.