Log in
LUPUS UK
22,651 members18,046 posts

how to define a lupus flare

I read a lot of symptoms on here that people post about lupus and other things but for me fatigue and pain are the worst. I don't think I get a lot of the other things but then maybe they are secondary to the fatigue and pain. I feel have very low energy levels, maybe 2 hours of either mental or physical energy a day If I am lucky. If I go over this it takes me several days to recover. If the lupus is doing something to me I don't know about it until I get blood tests done. With things like benefits [ I can't stop thinking about this lately probably because I am overdue a review] tiredness and pain don't seem to count for anything. [lost my train of thought now and can't remember the question I wanted to ask you all]

Is it flares that are making me so tired or is that just normal lupus? How can you say to a benefit assessor " I can't work because i'm tired"?

46 Replies
oldestnewest

Hello suzannah16

TBH I have the same question. I have never experienced what I would think of calling a "flare". I'm intensely fatigued all the time - although I can have some days when I get an hour or two of useable time . In 4 years, my ANA has never been lower than 1:1260 and generic inflammatory markers are always about the same. I've had a couple of periods of deterioration, but these were gradual and took months to develop. That can't be a "flare" can it?! Perhpas everyone is a bit different in how their disease expresses itself; lots of people might get rapid flares, others not?

On the question about benefits assessment, I think the general answer is to provide specific, concrete examples of how fatigue and/or weakness limits you. For example, "I have chronic fatigue which means I cannot walk more than 50 metres without stopping", or "My fatigue means that I find it impossible to carry out a task such as lifting a box file more than once or twice in an afternoon", "Due to fatigue, I find I can only sit at a desk to type for a maximum of two hours a day" etc etc x

5 likes
Reply

I force myself to walk hopefully for an hour each day because of sticky blood, high blood pressure and to try to keep my arthritic joints moving but this doesn't need my brain to work and I usually get back and fall asleep. Even when the pain is bad I still push myself because if I didn't I could get more blood clots and my joints would just stop working I guess because I don't won't to become housebound I am trying to do more than I have energy for so I don't qualify for mobility. I don't get care either because I manage, if I can't open jars I don't buy jam for instance. I could give up and stop trying to be independent would the government prefer this? I almost want to be diagnosed with something the government recognises as a disability which is stupid I know but it would be so much easier and less stressful than trying to fill in the next claim form designed to push us into something we can't do.

I suppose I just worry too much but when you have little else to occupy your brain other than will I manage if they take what little money I have away. I just want to sleep all the time. Do wolves hibernate? perhaps I was a bear in another life.

4 likes
Reply

The snap-shot assessment process for state assistance is just all wrong for autoimmunity...you would meet the definition of disability in law (The Equality Act), which is based on your ability to do normal day-to-day activities eg can't open a jar HOWEVER the DWP doesn't use this definition.

Perhaps one day this will be challenged in court - because cancer, MS, and HIV all meet the definition automatically, which is unfair - but as whisperit says, it'll all need to be spelt out on a claim form.

Most ESA appeals are successful on a 'could do harm' clause in the legislation.

Not much help, sorry, but help available here with form-filling! xxx

3 likes
Reply

they know we are highly unlikely to find someone who would employ us yet they put us through enough stress to kill us, that would reduce the number of claiments. I'm sure I have been turned down for jobs in the past because of my English accent and again for health reasons but it would be impossible to prove they only have to say someone else is more suitable. I know I would be unable to work regular hours and with being so tired I couldn't concentrate on anything for long.

3 likes
Reply

I know this is primarily a Lupus community but everything you describe is just as applicable to my Sjögren’s so I did just get around to reading your post just now to see how you are.

Mike’s reply is the one I probably should have heeded re my PIP claim last year.

But exactly as you describe - I feel I must push myself to keep moving throughout the day - walk dogs for 40 minutes - usually with my husband and working partner. My OT who is trying to help me manage fatigue rolls his eyes that I expect to be able to walk the dogs AND work 3 or 4 hours in my studio.

And maybe this actually means that I don’t need PIP and it should only be awarded to people who are literally housebound?

Or maybe we should qualify for the lower rate, which is all I was hoping for. Because fatigue doesn’t keep me house bound but it does mean I’m constantly at risk of mania, of mental and physical collapse - can’t stand still for longer than a few minutes, making me vulnerable to passing cyclists and cars and also them vulnerable to me. I feel like the Chaos Theory has manifested in me a lot of the time!

As you say for us it’s a no win situation with ESA or PIP because it’s so counter intuitive to encourage those of us who do have some mobility left to stop trying in order to become disabled enough to qualify. Keeping going and getting exercise and fresh air keeps me from falling into serious depression.

And truly I am just so pleased that I don’t qualify due to not being housebound yet - that I prefer to see failing PIP as a positive for me for the immediate future.

Instead I save my ire for the way the criteria are set out and for the government that punishes us all for not being able to work due to chronic illness. Some unlucky friends can’t walk their dogs on a beach in the sunshine, even slowly. The failure of society to recognise the impact of chronic illness on every corner of our being, upsets me deeply.

However I realise that some wouldn’t be able to get out of their homes for long enough to worry about being run over by cars and buses in order to reach their cars as I can. So what is counter intuitive to us is just downright impossible to them.

And I’m really so glad to still have my mobility, even if it’s very compromised by fatigue and degenerative disc disease these days, that I can’t bring myself to reapply or even think of myself as truly disabled.

Instead I’m just focusing on winning the Turner Prize - a more realistic goal I feel. X

5 likes
Reply

It's very different in Germany, where the government recognises that chronic illness reduces quality of life, and possibly lifespan, therefore will grant early retirement even if there is capability to work...though that does result from a very dark period in German history. xxx

1 like
Reply

glad you are back safe, I typed out a rely to you but it got lost and hasn't posted and i'm too tired to do it again

2 likes
Reply

Please don’t feel you need to. My comment has taken so long to write with edits due to numb fingertips, that I hadn’t even realised it had yet been read by anyone! X

1 like
Reply

I can't remember what I wrote either. my brain is mush at the moment

2 likes
Reply

Join the club, the TATTs and FAFs and oh-boy-we-get-to-wind-up-doctors club ! 😁xxx

3 likes
Reply

suzannah16 I so admire your tenacity to be as good as you can be and forcing yourself to walk. I need to do this, I am on warfarin but I need to do it for good mental help, help with sleeping etc etc You are a real role model.

This is only little but were you aware that you can buy special jar openers for not too much money. I agree with you and the other people who post on here that constant pain is exhausting & debilitating.

Take care xx

Suzee

M.G.

Reply

I don't have a strong enough grip to use them. I have tried. walking is as much for my mental health too. I am on apixaban, did get warfarin for a while. at least now there are no sore fingers and I can eat grapefruit :)

Reply

Hi whisperit, appreciate that labeling makes no difference to treatment or outcome, but with ANA, joint pain, myositis and poss. pleurisy, how about joining the SLE club ? xxx

3 likes
Reply

pleurisy oohh that is really painful. I think that is what started all my autoimmune stuff. I got pleurisy and was so weak I couldn't even open my birthday cards [got it just before my 25th] then a few weeks later the colitis started, the rest followed

1 like
Reply

Very sorry to hear you've been afflicted from such a young age XOX

3 likes
Reply

I'ts probably why I feel so alone with no friends or workmates. I try to avoid groups of people due to weak immune system and germs. just occasional aquaintances

3 likes
Reply

Woah, we're not friends ??? Ok, not as snuggley and lovable as Gus, but we're here for you! XOX

3 likes
Reply

everyone on here has been a life saver for me. reading my rants when I feel frustrated and giving advice. I could have done with you all 30 years ago when I first got ill. I don't mind that you aren't all cute and furry either I can cope with a bunch of fellow zombies :)

3 likes
Reply

👹😱🤣 XOX

1 like
Reply

In our minds we are cute & furry (well not that furry)! Xx

Reply

I'll think of you as a koala or wombat :)

Reply

Ha ha well Suzanna I have been told by my family & others who are close to me that I am very cuddly & snuggly (mainly my children) I must be a wombat then as they are non aggressive & lovely to cuddle.

You have me a good laugh so that is good xx

Reply

I used to watch an aussie soap called a country practice I think, about vets and doctors, they had a wombat called fatso I always wanted a wombat after that

Reply

That was a great show and wombats just want to snuggle up and cuddle of a day time because they are nocturnal. They are also docile and non aggressive.

1 like
Reply

I think of you as a beautiful dog (that will be dog that you choose & will be your spirit or good luck dog). We will all have to see photos when you get it as he/she will be an important part of your family xx 🍀🍀

1 like
Reply

There is a score card to measure a SLE flare, the SLEDAI-2k (http://www.sledai-2k.com/sledai2k.pdf), but it doesn't include fatigue because it can't be measured !

Opinions vary whether and increase of 4 or 6 points means a flare, but one research paper says it should be 3 or 4 (https://academic.oup.com/rheumatology/article/50/5/982/1772506).

Joint pain in two or more joints counts as 4 points.

In short, it could be you're due a medication review to counter a flare ? Some folks have background fatigue all the time, flare or not.

What a gorgeous picture of a sleeping beauty...he's smiling while asleep! There must have been a lot of love there! 🐺💓 💗 💖 xxx

2 likes
Reply

I think I over did the walking yesterday which made me really tired and then I went to bed early and lay there 'til gone 1am before I slept, awake again by 2am so today I feel like your beautiful selfie from a few days ago. my insomnia diary [not sleep diary] seems to show I have 3 insomnia nights before I have a sleep night so I am due to sleep Saturday night if lucky. Weather man says Saturday night will be stormy so may not sleep then either. medication review, what medication? apart from a load of vitamins and blood thinners all I can tolerate is hydroxy 2 or 3 times a week so not much to review. Gus usually slept on his back so that was a rare picture.

2 likes
Reply

AH, we must be sisters, I did the same last night...the insomnia diary...there's a book in there!

There's belimumab or rituximab for folks that can't tolerate immunos or steriods - that's what the NICE guideline recommends (https://academic.oup.com/rheumatology/article/57/1/e1/4318863#105890815). xxx

2 likes
Reply

Stormy weather is always a big trigger for insomnia for me as I sleep so much better with the window open, heaped with blankets. Decades of island life have made the sounds of a storm brewing or raging, a bad omen for me. And “seizing the day” due to poor weather forecasts is equally counterproductive I have found. X

Reply

which island are you from? I grew up on an island myself, although not born there. Hayling island down on the south coast near Portsmouth and the isle of wight. connected to the mainland by bridge. great beaches for dog walking and horse riding

Reply

I’m actually a Londoner born and bred - but moved to Orkney in my mid 20s and this was where my 3 sons were born and raised. Moved here 3 years ago after 28 years but still go back a lot X

Reply

I'm also London born although my parents moved away when I was a year old. coincidence. glad I got the warmer island :)

1 like
Reply

Twitchy I commented on a new ink drawing of yours (at least I hadn’t seen it)! It was wonderful, was it one you did recently?

Talented lady. Sorry for the high Jack

Suzee xx

1 like
Reply

Thanks Suzee. It’s new work/ project I’ve started with my other half. I do one floor he does the next. It will become paintings in time. Houses are great metaphor for so much stuff!X

Reply

Looking forward to the next one, you talented pair! Still trying to work out how I can see the ones you didn’t feel you should put on this forum??

Keep up the great work it is positive for us all to see it 🍀🍀🍀🍀

Suzee xxx

Reply

Hi tbh I think a lot of us unless it’s specific a infection or a reaction to something that makes us feel worse than we already put up with I have yet to hear it’s a lupus flare because mostly with joint pain low grade fever skin problems. Hair loss on and off foggy head sweating headaches the list is endless so on a daily basis this is our life and the fatuige is crippling so when is it a flare it seems to me that once again it’s defined be Drs is your blood tests which don’t portray what is physically going on. I keep a diary and the gp just nods and I leave nothing changes except my app get further apart because I think what’s the point😩but interesting to read what other view on this also x

4 likes
Reply

I regularly ponder the 'constant fatigue' question myself. I was originally told that I have M.E./CFS, then I was told that I have Lupus plus Hughes Syndrome, plus various other things. All can produce extreme fatigue but, it seems, it is unusual for it to be constant. In any case, whatever combination is causing it, I have no found any way to move beyond doing, at the most, a couple of hours of productive 'work' per day - however I can't do anything even vaguely physical for more than 15 minutes. And some days nothing that one might term 'physical' can be attempted. If I go over my limits, it takes days, even weeks to recover fully. Moreover I have periods which can last 2-3 weeks where I get some sort of worsening of symptoms, usually including a flare in IBS-type symptoms, and then physical stuff is just out, full stop. When I have asked the rheumy about this and whether it is a Lupus-related flare they sort of evade the issue - these particularly bad periods are not preceded by a fever (although quite often by intense shivering and a low body temp for several hours or more) and generally I don't have joint pain, or as Loopyloo also highlights, skin issues. I don't know how much of this is 'you', but it may help to know you are not alone in this in constant fatigue.

In terms of dealing with the DWP and their agents, assessments should focus on how conditions affect your life/ability to perform certain tasks, rather than the condition itself. So it shouldn't be a case of saying 'I can't work because I am constantly exhausted and in pain' but illustrating this in practical terms in response to the questions they ask. If you have to break tasks/activities down in to small chunks and take breaks in between, for example, this needs to be stated, and constantly re-stated i.e. in response to all questions where it is applicable. I realise you probably know this already, but it may give you a bit of confidence to hear it said again. Basically one has to be rather like a stuck record in dealing with the DWP.....

Good wishes.

3 likes
Reply

P.S. Love your dog!!

Reply

I lost him last march :( I think losing him has made my lupus seem worse because I was trying so hard after surgery last year to be well for long walks along the beach and then he died due to lack of concern at the vet. vet was uncaring and as a result I had to make a hasty decision to put him to sleep as he was suffering. I should have changed vets, got a 2nd opinion but then waiting for a different medication to kick in would have meant more suffering for him

Reply

I'm really sorry. Losing a dog is so awful. We had a springer spaniel but lost him a few years ago - in our case we are lucky to have a fantastic vet (we still have a cat) but it was spleen cancer, which is often called the 'silent killer'. The day our boy's symptoms showed it was way too late - the enormous tumour burst. We still miss him hugely.

1 like
Reply

You poor darling Suzannah. I started getting allergies as a child & abdominal involvement late 30’s. I really feel for you.

I can’t always get things off with the can openener but always try it first.

I think that you are a role model in forcing yourself to walk with all of your problems so will make myself go for a walk (I will mentally say what would Suzannah do)!

My Haematologist is wanting me to change to one of the newer blood thinners & I will. Do they ever check the viscosity of your blood after you go on these newer anticoagulants?

You do an amazing job, do you have anyone to help you? I am hopeful that many of us will see either drugs that holt our disease & it won’t get worse or better yet like with Odteporosis they actually have sub cutaneous treatment that helps get rid of old bone & lays down new quality bone. Given that there has to be a time that it will happen for all of us.

Constant pain tends to rob you of your energy levels & thus affects other things in your life, that’s why it’s so incredible that you force yourself to go for a walk each day 🥇

You have a beautiful dog there, what is her/his name? Also how old is it?

Even though eekt stunned us with her amazing looks and twitchy with her amazing ink drawings, you are a good role model of what we all should do pushing yourself to walk an hour a day. Other people are good with music etc

I am still working out what I am good at and hopefully I will remember to tell you when I remember what I am good at,

Take care Suzannah

Suzee (M.G.)

🍀🍀🍀🍀🍀🍀🍀

Reply

I don't feel like a role model but thank you for saying so.:)

MY dog was called Gus and he was 14 I lost him last march unexpectedly as he was still very fit. the vet was very unhelpful and I should have gone elsewhere but by the time I realised the vet wasn't trying to help him he had already suffered for a month and I felt if I had then taken him somewhere else and he was given medication it would have taken a while for it to start working and I felt he had suffered enough.

I don't have much in the way of help just the wonderful people I have met on here. MY parents are elderly and just don't understand an illness they can't see.

I like your idea about new bone as I have osteoarthritis just hope it isn't painful.

As for walking an hour I didn't say how far I got :) some days it takes a long time for just a short distance. I just set my self little goals like to the next tree then rest and then another short distance. and try to keep going, then come home and sleep

1 like
Reply

Suzannah I have osteo arthritis too and the company that supplies Forteo is doing trials for Osteo Arthritis. So far it is only approved for Osteoporosis & slow healing fractures. Let’s hope it can be used with success on Osteo Arthritis. Does your Osteo Arthritis give you joint deformities on your hands and feet? Mine does although it is mind boggling that they are now getting good treatments to diverse the disease state!

Whilst thinking about you I remembered that I that lung tuberculosis that was not treated in my childhood and also Hepatitis A which was going around the school. It was a very remote area that I lived in at that time and the Dr was not very informed. He did not know that if a child presented with yellow skin, yellow eyes instead of white, nausea & vomiting, really dark urine & White feaces that was a sign of acute liver problems. It shows that my immune system was flattened in earl years.

Do you think that you might get another beautiful dog? I hope that you do as clearly Hus was very much loved,

In terms of my walking I will be doing what you are doing as I don’t want to walk too far & find I am in too much pain to get back (I will be having the stops & doing some stretches at each rest to help the pain).

The fact that you push yourself to walk each day is in itself huge xx

All the best

Suzee 🍀🍀🍀

Reply

My joints all look normal so far but the pain is still there, tends to move around but is mainly my hips and lower spine, ankles and hands. I would like another dog but there are so few dogs within easy travelling of where I live and the few there are have behavior problems that I don't feel well enough to cope with. I have signed up with a charity as a foster carer hoping I might get one that way as they rehome older dogs but so far after months of waiting they haven't found a dog for me. I really miss the furry company. I walked too far one day and the pain suddenly kicked didn't think I would make it home. just go steady and increase slowly. sometimes I do a short distance but try to do it quicker rather than go a long way.

Reply

Suzannah is it possible for you to ask someone (if you don’t have family nearby) to take you to get a beautiful dog that you bond with. If there is no one near by sometimes they have special volunteers for such things. It’s hard for me to imagine where you live & even if it is doable as in if it’s a long drive away you may have to stay over night if you can to make it less stress on you.

I think a new special furry friend would be such a positive influence in your life and the furry friend that you get will have found a good home & lots of love.

Like you I get pain in the areas that you have mentioned, it is all debilitating but when you have it in your spine and hips it is tiring and revolting, that one really gets me down although I am a very positive person and try to stay that way xx 🐕 🍀🍀

Reply

I have tried everywhere for a dog, I would have to travel about 100miles to the nearest places with lots of dogs to choose from which might not sound much to an aussie:) but here where everything is so much more squashed together it's just too far and a complicated drive. I got my Gus from one of those many years ago and it was really too far for him as he got car sick on the way to my home. I'm just not up to that sort of distance now. I just have to hope one of the local dog rescues gets a non aggressive dog. I live on the east coast of Scotland in a rural area about 10 miles from the nearest town. lots of fields of polytunnels with strawberries

Reply

You may also like...