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LUPUS UK Community Survey - Question Two - Can you describe how fatigue feels and the impact it has?

Hi everyone,

This is the next question for the community survey. For information about the research this is linked to, please go to healthunlocked.com/lupusuk/... or contact MelanieSloan .

Almost everyone said that fatigue is a life changing and debilitating symptom. It is also one of the most invisible and most difficult for those who haven’t experienced it to really understand as it is way beyond normal ‘tired’.

Can you either describe what the fatigue feels like to help people understand (we know it’s hard to put into words!) and/or what impact it has on your life please?

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Hi fatuige is crippling and wears you down. As much as you try and stay positive and acitive it’s always there you never feel refreshed even though you may have just got up. I like to be in the garden but I have to push myself get past how you feel !

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Thanks Loopyloo, you say you have to push yourself to get past it. Do you find pushing yourself makes you feel better or worse after?

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Hi after I have done this in the process have had to take oramorph for pain to keep me going which at the end of what ever am doing it makes me feel better as I know I can always relax after and rest to feel better physically 😊

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I feel like a rag doll, no energy, so tired and like a zombie at times. My eyes always feel heavy. It's all like a drunk feeling, can hardly put one foot infrint of the other. Not with it at all most days. Hope this helps. I have fibromyalgia and sjogrens which fibromyalgia was the 2nd diagnosis, first one was lupus.

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Thanks Mandypandy, that's a good description. When you say 'not with it' do you mean you feel the fatigue has an impact mentally and concentration wise as well as physically? How does it affect your life please? (if you don't mind saying)

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Yes that's exactly it. My life is virtually taken over by fatigue, muscle aches, soreness amongst lots of other symptoms. I think waking up every morning and knowing how you are going to be could make the fatigue worse. It brings you down, I suffer with worse depression than before. My words come out wrong and feel i am slurring my words. I feel like i am a rag doll. Limp lettuce. Flu achy. Lol. I don't know any other way to describe it.

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My whole body feels so heavy. I don't walk straight, my legs and arms feel like lead weights and so weak. I don't really have a life like none of us do on here. I haven't worked for almost 4 years. I have got worse in the last 12 months. My problems started when I think back after having the Epstein bar virus when I was 18. I had chicken pox at 15 and inner ear infection/vertigo at 23. I am 50 now and every symptom I have had over the years fits into place now.

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This is how I feel.. Everyday a struggle, work i feel is making my fatigue worse and my joints and muscles hurt all over. I'm not yet diagnosed (see specialist next week) but I know this isn't normal for me. My mum passed away when she was 39, she had lupus since her early 20's. This site is brilliant. X

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It feels as though I’m stuck inside a lead suit. Even blinking seems to be an effort. When it’s at its worst I can’t do much more than lie down all day. On a bad day I wish I hadn’t woken up, and that’s the kind of day It takes about 10 minutes to work out what day of the week it is. If it wasn’t for my dog, I’d stay in bed.

For days I don’t even get dressed, eat even less than usual and have extra shower phobia ( the phobia is usually just anticipation of how cold I’ll be afterwards thanks to Raynaud’s, but this is the sheer effort).

This sounds very bad, but it makes me feel less than human really. Audiobooks help so I can rewind to several chapters back when I lose the plot.

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That's a really good description. I think so many of us with lupus have days like that and the 'lead suit' and making you feel 'less than human' may help others to understand more.

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Thanks. It’s so very hard to describe it.

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Absolutely Lupiknits.... spot on. Lead suit.... wow. Perfect. Lead brain too... Thanks and hope today less lead like x

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An overwhelming feeling of mental and physical weariness not relieved by rest or sleep and sometimes making it impossible to sleep

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Thanks Milliecox, do you find the fatigue sometimes makes the insomnia actually worse?

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I think it can but had to know

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Trying to explain fatigue in a way that really sums it up is a constant mission for me. My mum has suffered from sporadic insomnia for years, and will often tell me she understands the feeling when I talk about how fatigued I am. I don't doubt how exhausted my mum is and there is little worse than sleep deprivation. But I can't reiterate enough, it is not the same tired as having not slept. Fatigue is an exhaustion that goes to the core of my bones. All's I want to do Is lay down. Not even necessarily sleep, just to be laying so I don't have to support the weight of my body. I'm currently having a bad patch, and I've noticed little things that subtly shift. I only have baths, because standing in a shower and washing my hair is too much effort. I only get dressed if it's unavoidable. The house is a disaster zone. I love cooking, but eating is currently anything that can be slung in the oven or microwave that requires no attention. On Monday I woke up and cried, because I might as well have not gone to bed. I can sleep for 10 hours and wake up feeling like I'm ready for bed. It's soul destroying.

I can remember sitting at my desk at work and giving myself permission to shut my eyes for ten seconds, only to open them and realise minutes have passed. I've sat in office toilets just so I can rest my head against the door and have a break for 5 minutes. I often don't reply to messages. To an extent, my friends understood when I stopped going out or doing things. They can't understand how replying to messages can be taxing. It's not that I don't want to, more that I think 'i'll get to that in a minute' and the 'in a minute' never comes. It gets filed away in my head with all the other to do's and gets forgotten about.

For me it's kind of like a horrific hangover, or coming down with the flu. It's this constant vacuum of energy being drained away. I crave sugar and salt. Thinking can be like wading through tar. If I only had myself to worry about, I think I would get in bed and stay there. Luckily, I have people in my life that make that impossible, because as tempting as bed is I know it wouldn't be good for me. I said in a post to someone recently, I reached a point where I was asleep for all of my life where I wasn't at work. But it doesn't make it better, it just takes up all the hours that could be filled with good stuff. Fighting the urge to rest or sleep is a constant battle, but it's the only way I've found to stop it having complete control over my life.

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That's so well described - thank you for sharing this.

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both mental and physical exhaustion. have it either together or separately. plus insomnia. can feel like I am constantly wading through deep water. I want to sleep but can't and when I do sleep it makes no difference to the fatigue. can't plan to do something as I may not have the energy to do it. can sometimes hit me suddenly like running into a wall. I am always looking for shortcuts when doing things or just doing the bare minimum.

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Thanks suzannah16, the being unable to plan is another major point people are mentioning that makes life harder

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Fatigue to me feels like I have been sedated. I know I’m awake but nothing functions. Like being woken up from surgery, you can hear and see things around you but you just can’t process anything. Your body doesn’t let you sleep and even if you did manage to doze off you wake feeling just the same. I can’t tolerate noise as it hurts my ears and I can not participate in a phone call.

My mental health is impacted because I am aware that the fatigue is present but nothing can kick you out of it and it does make you think, I can’t do this another day. It’s not the same as being tired , it is almost a zombie like state. Days like this I don’t get dressed or get my kids to school but physically I just can’t do it!!!!

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Thanks Lisalou for sharing this

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I had fatigue as one of my first symptoms and most resistant to treatment.I feel like I walk through treacle while others walk through air everything feels harder everything is conscious mental effort.I can wake up tired.I feel like my legs are filled with lead.Some days I get nothing done, although learning to pace myself has helped me get a bit done.I feel fury when other healthy people say they feel tired too.I would love to have that physical tiredness because you've done something!The fatigue of autoimmune diseases is totally different it's wearing mentally knowing I have to live like this.It's invisible people can't see when I feel faint with exhaustion standing on the bus.People think effort will overcome it well it doesn't.You can't will yourself well I think it's by far the least understood symptoms by healthy people they just can't imagine how it feels.

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Walking through treacle is such a good description. When you say healthy people just can't imagine it or understand how effort just cannot overcome it, how does that make you feel? Do you feel Drs understand the fatigue and have helped you with it?

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The fact that healthy people don't understand how fatigue feels and can't imagine it makes me feel sad alone and angry. I think people who have invisible illness get no help or sympathy on the whole.I read a bmj article on fatigue quite early on and cried because it described so much how I felt, I then showed my family which helped and they are pretty good as living this limited life is frustrating for them too for example today is a lovely sunny spring day but I had to rest for 2 hours this afternoon. But even they don't fully comprehend. This is the article bmj.com/content/345/bmj.e7004

I find doctors vary some are sympathetic which helps as you feel believed. Finally getting immunosuppressants has helped a bit I think because it has reduced the pain, and my current consultant has helped in that he gave me immunosuppressants, but fatigue is still a major symptom.Some doctors in the past were less helpful. I have found my GP very good as they knew me before I was ill, and so can more accurately see just how the illness has affected me and changed my life, compared with the consultant's who only met me once I was ill.

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I can agree very much with your point about a GP knowing you before you became ill. They are the ones who really see the difference. The problem with rheumies is that they see you much less and have no idea what the “old you” was.

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Thanks Jane, that's a very good point about having that continuity with Drs so they can see how much your life has changed.

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I always said it feels like the worst hangover that lasts forever, or how you feel after 3 months with a colicky baby that never sleeps. Aching muscles, heavy limbs, lack of internal batteries.

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Lack of batteries is a good one. Thanks treetop33

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Fatigue at its worst left me wondering why a beating heart is the definition of 'alive' because I was unable to do anything but lie on my side, not even able to form a coherent thought.

Middling fatigue left me falling asleep in any situation - even meetings at work - and unable to stay awake after 9pm so the memories of family weddings and other life events are short.

The mild fatigue I'm left with now and again feels like the start of a cold that never develops, a tiredness that no amount of sleep will shift, and a weariness leaving me struggling to find words.

And with it all, however mild it is, the feeling of losing out, missing out, of life passing me by

Thanks for doing this work for us Paul! xxx

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I think that feeling of missing out and life passing by is felt by so many. Thanks for explaining it so well eekt

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THANKS Melanie for doing the research....by golly, the gratitude for people just taking an interest in the human impact brings tears to my eyes! Thank you xxx

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You’ve set me off now x

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Oh LK can you feel my BIG HUGE cyber hug? xxx

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Hugs are always gratefully accepted and reciprocated. Then we can have a little rest x

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Oh eekt what an AMAZING opener "Fatigue at its worst left me wondering why a beating heart is the definition of 'alive' ..... ".

At the depth of my autoimmune condition I lay on the grass in the summer sun and watched my family partake in a ball game. All I could do is curl up on the picnic blanket and watch. I did not even care that I could not take part until I looked across and saw a lady in wheelchair of about 95 years old, looking a million times more alert than I. And that I think was the moment I realized what I had become. Thus your opener has really brought it all back.

I only ever spoke about the fatigue to those that were in the same boat as me. To folk who did not suffer from fatigue I merely mentioned the Spoon Theory and that helped the odd person understand. But to the majority I did not bother to waste what little energy I had on elaborating what it meant to me. I thought to myself I would NEVER have understood fatigue without having been through it myself. So how could I expect others to understand.

Today I am VERY grateful that my fatigue sits at 0 to 10% on any given day. And I pray from the bottom of my heart that those days NEVER return.

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Me too, I've reduced to mini-flares for the past couple of years and each time one starts up, I curl up in the hope it's not going to worsen and last years...I lived a half life for almost a decade - work, eat (when I had the energy), sleep - and the overwhelmingly sense of grief of what I missed out on in that time is the most difficult thing I have to deal with, pre-diagnosis, when I had no explanation for what was going on

Willing your fatigue to be 0% every day and wishing you all the best xxx

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Thank you for your good wishes eekt - much appreciated.

Keep seeing the glass half full.

Joy xx

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Thanks eekt, do you think it's much harder to accept the fatigue when you don't have a diagnosis and reason for it? Do you think you may then push yourself harder at that stage?

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When my rash was at its worst (and the fatigue, I would think, but that time passed in so much of a blur, I was barely getting by, I can't compare it to later stages), I was working full-time for an aggressive employer that forced me to take annual leave when taking my mum (who probably had undiagnosed SLE, crippling joint pain and vascular dementia +++) to medical appointments, on top of spending my free time looking after her...I had no idea what was going on with my body, just knew I was very close to breaking point but had to carry on

Over the years, now and again I tried to 'break the cycle' as one GP put it, by exercising well beyond my limit to force a sound sleep, which never happened of course, I would simply have a restless, feverish night of no sleep

At the GP appointment when I insisted had to be done about this 'tiredness' because I was struggling with the commute - after seven years of being fobbed off: 'it's your lifestyle', PAH! - said GP instructed me to stop driving during investigations, meaning a 5am rise before a 2-hour bus journey to work, arriving home again at 8pm sometimes! I was reeling...but again, I had no other option but to carry on

I've learnt the hard way, post-diagnosis, that exercise has to be built up gradually as too much means one step forward, two steps back....no doctor has ever mentioned fatigue, except at the initial assessment

Well, that reply's a little longer than planned! I feel better for getting it off my chest! Thanks for listening, researching and leading the way to a better lupus world Melanie! xxx

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Thanks Joy, it's interesting you write 'this is what I had become'. Do you feel that the fatigue and the limitations on lives actually changes us as people? Was there anything you did to get the fatigue down to 0-10% or is it in line with less overall lupus activity? Very pleased for you that it's down to that level!

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Hi Melanie

Yes it changed me. I would say for me at my lowest point which went on for some time it was the equivalent of taking an able bodied person and cutting off their arms and legs. Hmmm .... not sure about how to describe what happened to my brain but like Elvis it left the building.

I have UCTD not Lupus but fatigue is fatigue is fatigue.

My degree is in Food Science so when I was not lost in the fog and sky high on steroids I researched how to reduce the fatigue. I found a book on Omega 3 and one of the chapters talked about the link with fatigue. I have taken cod liver oil all my life, but it was the Omega 3 that the book said was what you needed to boost. It said to take 1500mg of Omega 3 for 1 month, if after that you felt less fatigued carry on thereafter at 1000mg. It worked for me. I'd say it took about 20% of the fatigue away. I cleared it with my Rheumatologist first.

Then after some time the meds began to work their magic. And now exercise has joined the mix.

So it's Omega 3 + meds + exercise = 0 to 10% fatigue/day

It's wonderful being back on planet earth again!

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Yes that's a great description. That does sound wonderful and thanks so much for sharing; it might well help other people :)

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That’s reminded me that I’m frequently D3 deficient. I dutifully took loading doses and have kept up taking it daily. It didn’t surprise me to discover the deficiencies because I’ve dodged the sun for decades. It wasn’t until I looked it up that I see it’s strongly associated with aches and fatigue (I’d only thought of it in a “rickets and ration books” way)

Having said that it seems I’m constantly low in blood tests. I’m trying Omega 3 as well. My diet is very limited and the chance of me keeping down the recommended fish is very small.

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I don't know how much D3 you take but I was recommended to spread mine across the day that way it maximizes uptake. Also just a bit of info in general ..... for any vitamin/mineral it's best not to take them with caffeinated beverages as the caffeine has the effect of blocking the body's uptake.

You'd have to eat quite a lot of fish to get your daily dose of Omega 3. That's why even in the days before my autoimmune came calling I got my fish oils from capsules.

Hope the Omega 3 helps.

Joy

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Thanks. I skip caffeine , partly as a result of reflux and partly thanks to urge incontinence. This is very helpful x

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The fatigue is horrible. It’s waking up everyday and not wanting to get out of bed. Trying to eat is hard to do when exhaustion hits. I can sit down and fall asleep sitting up. When we were at a lecture one of the doctors said if you want to sleep at night don’t nap during the day. We have no choice if I can’t sleep I get a sick feeling in my stomach and feeling very dizzy I think I’m going to pass out. There is no way I can stop it. It’s walking thro treacle every single day of my life. And if I can walk it’s got to be a good day. This is no way to live a life it’s not living it’s existing.

I have Lupus as primary. Sjögrens Fibromyalgia diabetic Addisions asthma ibs to name just a few life is hard

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Thanks crystal11, when you say the Dr at the lecture said don't sleep during the day, do you feel that your Drs/ Drs in general understand the depth of sick/ dizzy absolute fatigue you get and help you with it?

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I just looked it up and the. Film is called unrest. I think everyone with fatigue should see it x

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The fatigue comes from nowhere. For me it just drains all my energy and when it is at its worst it feels like my legs and arms have turned to lead. I can’t think straight and this causes such despair. In its mildest form I fight thru it, drinking lots of water and keeping occupied. When the lead feeling arrives there is nothing for it but to rest. My arms and legs don’t function normally and I call it my ‘Tin Man’ day. (From the Wizard of Oz)

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Thanks Cas70, when you say you can't think straight with it and that causes despair, do you find the physical or mental fatigue side the worst? Do you get help with this from your Drs?

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Both equally I would say - really upsetting because there is nothing to do but wait for it to pass. It scares me for the future. No one has ever offered advice on how to deal with this or other symptoms- I have worked things out or listened to other sufferers. That is why support groups and this site are a God-send. I was just given Hydroxychloroquine and sent away. My GP practice is only interested in getting me on Metformin and Statins. I don’t need either.

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LOL I had my GP pushing a statin despite being well below the official level for it! This site is the only place I've had for advice in dealing with 'IT'....apart from practical tips from the last dentist I saw. Hope you're doing ok Cas xxx

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Hi eekt - my dentist gave me a whole sheet of instructions for Sjogren’s- no other person has! Best advice from her was to cut out sugar. It has really helped. I have just had a great black pit of despair day but I knew it would pass. I think we are all allowed to feel sorry for ourselves now and then. I honestly feel it is such a struggle sometimes with no let up, future, or end - apart from the obvious. I still shake my head in disbelief at the lack of co- ordination, knowledge or availability of experts. I have gone into a parallel universe ! Be well as you can be, sorry for rant - I will stick stiff upper lip back on tomorrow when I find it ! X x 🥴

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Rant away! This is the place to come to vent! I share your 'just sent away with hydroxy' feeling! xxx

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So sorry you've had one of those bad days. Fingers crossed for better ones soon

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Thanks, It’s the tiredness. I saw my friend with fibromyalgia yesterday - that snapped me out of it. Taken her 4 years to get a diagnosis. She is 30 years younger than me, that really is sad.

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Some days it feels like there is total body resistance to movement. Almost like i am trying to wade through deep cloggy mud even though i am just walking. Sometimes the energy just plummets as if someone has suddenly pulled out the plug and it has all emptied away. I feel weak and very tired then and all i can do in those circumstances is to go and lie down and just wait for everything to re-set. There is no physical strength left to even take a lid off a jar. There is no warning as to when the fatigue will hit... but simple everyday physical tasks like vacuuming or mowing the lawn can cause the sudden drainage of energy. It is frustrating because i get a puzzled look when i say that it is a "walking through mud day". Even a slight rise in a path level when walking can feel like a mountain to climb. I try and push on regardless because i don't like to give into it...admit to weakness...it makes me feel vulnerable and cross and i also think other's won't believe me because there is no flashing tank empty sign above my head that is visible. Brain fog is more likely to hit then. I have only one ear on a conversation as i am fighting off the giant constant yawns...

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Thanks unity3, that's very well described

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Utterly shattered my legs, my arms feel as if I have lead weights on them. It's a draining feeling, my body can't control what I do as RA has attacked my toes so I fall backwards sideways and front. I try to keep active as once I use the electric chair that hasn't had an outing yet I know I will be on the slippery slope. Thank goodness they have introduced the MCADD to the heel prick test. I have had Lupus since birth so there is very little in me now, l am the lady the NHS forgot as I have Psoriasis PsA and nail problems plus Ehlers-Danlos periodontitis type. Don't bother to ask the London Dental Hospitals as unless your local authority gives you the money you don't stand a chance. Paul we need to try to work out a dental scheme with EDS UK as all types have some impact on the mouth, as does Crohn's, Colitis and Psoriatic Arthritis that's 4 charity's and there may be more.

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Thank you New47, sorry to hear you've had such a difficult time

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As I was previously an always active, positive and glass half full person, fatigue can (on full throttle) be so psychologically damaging that the physical disruption to your everyday life pales into insignificance. Lupus can dictate to both your body and your mental health. Why is some form of counselling not regarded as integral to the treatment process?

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That's so true about the psychological damage from our lives changing so much. Have you had any help from Drs psychologically or in managing fatigue?

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I’m butting in here, but the most help I’ve had was with a referral to a Pain Management Service. It was one to one, an hour each time, a luxury in itself. The service had nothing to do with pain, really, the emphasis was on managing my life, emotionally and physically.

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Thanks Lupiknits - please do all join in wherever on these questions - it's by conversations between those who are actually going through it that the biggest learning about improvements will happen (hopefully!). Can you tell us what they did please to help you manage your life? How helpful it was?

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It taught me a lot about pacing, and, because we had so much time, we shared tips on coping with Raynaud’s ( he had it too). I learned to view if “all I could do” was a 10 min walk with the dog, it was an accomplishment.

I had to take early retirement from a fairly high powered job which was intellectually demanding on top of sometimes having to be available 24/7. Finding myself sometimes unable to remember my PIN number now is a big come down.

Above all, it helped me with what others have said: acceptance. Not easy to practice all the time, but such a helpful prop.

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Thanks Lupiknits, I suppose it's about changing expectations and feeling a sense of satisfaction from what we can do rather than grieving for what has changed? Like you say, not easy though.

Do you think the things like not being able to remember PIN numbers etc are from the fatigue or the direct effects of the lupus on the brain?

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I think the fatigue gives me brain fog. In fact, when I was working and we’d had some long hard days quite a few of us joked about scratching our heads in front of cash machines.

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My first (brilliant) Rheumatologist when he saw I was really struggling with the readjustment process referred me to a hospital based counsellor/psychologist. I made it clear from the outset to this person that my powers of concentration for all things were severely compromised by Lupus. The end result was that I was offered a pre-printed reading list at the end of the appointment! Active listening? ….. No. Tick in a box for that NHS appointment … Yes. Outcome for the patient … 0!

As far as GP provision is concerned, I've been prescribed anti-depressants …. long term! What a waste of valuable NHS resources.

For the record, I'm SO proud to live in a country that regards treatment at the point of need as paramount and a given. That, for me, is the measure of a civilised society.

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Thanks lupieibbie, have you got any suggestions for what could/ should be offered to help adjustment to these diseases?

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Well, I'm a great believer in talking therapy as opposed to the expensive sticking plaster of anti-depressants. When you're first diagnosed, as I was after 2 weeks in hospital of being poked and prodded and much scratching of heads, I would have grabbed the chance of speaking to someone about the 'bereavement' (because that's exactly what it amounts to) I was experiencing for the person and the life I had been able to live up to that point was now gone.

I believe that access to someone who can offer an active listening ear at the early stages after diagnosis can not only positively impact mentally but also physically. The human being is one entity and, for historical reasons, this distinction between the physical and the psychological and the resources assigned have created this long held misconception that the two aspects are not interdependent.

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I was given appointments with a psychiatrist to help cope with long term illness and pain. All she did was teach me how to relax and breathe. She said if I felt I was becoming depressed to just think happy thoughts. As if it were that simple.

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Melanie, I think I've covered your question in my other replies but, if not, please get back to me.

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You know that one weird boring guy at parties?

He sits in a corner occupying one of the chairs and takes all night to get through one drink. Nobody can remember who invited him.

He doesn’t really engage with anyone, just sits and watches everyone else have a good time. He completely sucks the life out of the room.

He doesn’t have any social etiquette and absolutely will not take the hint that nobody wants him there. If you try to talk to him the conversation is like pulling teeth so you eventually give up and make a lame excuse to get away.

Fatigue turns me into that guy.

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That's a very good description, thank you Crazy_Cat_Woman

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I have spent the last few years having fatigue management with a lovely rheumatology OT. He has helped me at least try to pace better but has finally discharged me as we decided that I’m doing all I can. But ultimately there is nothing more either of us can do - I’m a hopeless case 🤷🏼‍♀️🙄

Sometimes it makes me feel as if I have to lie down wherever I am, instantly. This type is scary - once I lay down and fell asleep on a beach in the rain while walking my dogs. Another time I had to lie down on a coat under a shop orning on a busy city high street in the drizzle.

More often it is a slower type where I wake in the morning still feeling tired and can think of nothing but getting back to my bed all day. Yet when I’m in bed I often can’t sleep. My eyes have to be watered (Sjögren’s sicca) and sometimes kept prised open with my fingers manually. They twitch and often resist all attempts to stay open.

My peripheries and face are the worst - I have to cushion my arms and legs and face when still or resting as I can’t get them comfortable. It’s not that they always hurt or ache - just that they feel so leaden and seem to want to furl like ferns or wilt like dying petals. Yet when I really have to move them again I can.

Fatigue affects my mood and my ability to cope with pain. I become grumpy and irrational without knowing why. I lose my ability to self regulate and become manic. I make poor decisions.

The chronic fatigue of autoimmune diseases is like an illness all of itself and needs prioritising by the medical profession and researchers because it affects every aspect of our lives - from family relationships and work - to the ability to socialise.

When I slump into uncharacteristic depression, profound fatigue is invariably at the heart of it.

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Thanks Twitchy, that's good you found the OT helpful. Did you find pacing etc helps a lot?

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I’m really not very good at pacing at all although I gave the OT a rather good but false account of my myself until my husband met him one day and told him it was absolute nonsense and I’ll be a seize the day person until I drop!

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after an hour or so of sitting in a meeting im so exhausted that i can hardly sit in a chair in the next meeting no matter how engaging it is. If i keep pushing and most of the time i have to in order to keep my job i get to the point when im so out if ebergy that i have to think in order to breathe. All energy is used to breathe and can't do anything else. So i have to lay donw every few hours for at least 15 min and they helps. Each day is different thou. I have completely normal days and i have days when i wake up and i have almost no energy and have to stay home the whole day.

Reading what others said I do agree with folks that said that it feels like i have a flu, that it can come very suddenly where you feel you need to lay down asap. I have been know to lay over the table in the middle of a meeting. However with me it doesn't come with depression. I remember being very happy one time after a successful presentation, feeling accomplished, respected and just happy - still I had a complete lack of energy. Mental fog was more prominent before, but got better after i started taking t3 hormone 5mg...

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Thanks miccika1, do you think the mental fog you describe is a part of the fatigue?

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Possibly. For example in afternoons i have harder time concentrating and following in meetings, and when i talk I have harder time finding correct words. Still the physical part of jo energy is more prominent, mental exhaustion seems to naturally comes along. I have noticed that regular folks also have harder time concentrating at 4pm meetings compared to mornings

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I have to manage the fatigue all the time regardless of Wetherby I am having a flare up or not eg. Planning for outings and then restful day...reducing working hours per day...going to bed and getting up same time every day. If I don't I get a return if increased symptoms...more systemic nerve pain...stiffness in joints..migraine etc. The fatigue is more than tiredness...u just have to stop and sleep for a bit..during a flare I sleep a lot of the time and even going out in the garden or talking to othets is an effort. It's difficult because it is not very visible to others. .i try and manage and hide it as I find it embarrassing to explain and feel like I am wingeing all the time. Very debilitating and impacts massively on my and my partners quality of life at its worst. Thanks for doing this research hope it helps both those with lupus and the healthcare community to be able to understand and work better together to manage it.

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Yup. I feel this way too.

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Thanks Flueby, when you say you have to manage the fatigue all the time, is that something you've got better with over time and is it something you've been helped with by the medical profession or learnt to do yourself with trial and error?

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Hi. I am an Occupational Therapist and have taught patients the principles of fatigue management for years...but I now realise just how difficult it can b to implement in daily life around commitments. However yes I have got much better at managing it but some of that is around acceptance that there is a problem and learning to put myself first sometimes. Hope that helps

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That's so interesting to get your professional perspective as well as a patient. Is there a difference between how you teach and interact with the patients you're teaching fatigue management to, now that you've experienced it yourself? Do you think anyone can truly understand that level of fatigue unless they've experienced it?

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I have worked with a lot of people with fatigue and I think initially could not understand why they didn't do what they needed to manage their fatigue. However with experience I could reassure them that I understood how difficult it was to implement in their daily lives but now I REALLY understand how difficult it is when u have a job kids bills to pay etc and yes I am definitely much more understanding now and try and introduce fatigue management principles more gradually as i had to myself eg.suggest they try 1 thing first that more realistically fits around commitments like a 30 minute sit down and a cuppa after dropping the kids to school and before picking them up or initially just identifying those activities that take the most energy and that are priority. I am finding that I can then build on this rather than give all information in one go although I work in a rehab unit so am better able to do this over time and would find this difficult in a one off outpatient appointment. I also think the group approach over say 6 weeks to share experiences and support the principles is a better way to go regardless of the condition causing it. That way there is the shared understanding. Hope that helps

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Two connected things I did forget that I feel are really important for anyone teaching fatigue management is understanding and talking through the psychological side of acceptance of any condition and its effects first as this was key for me i think eg first accepting it was happening to me and trying not to be embarrassed about it...although i still am for sime reason and then supporting and suggesting that there will be times when u just have to give in to fatigue and rest and that it is not necessarily something u should be able to manage and fight all the time. This I think was my turning point. Again. .hope this helps

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Yes very helpful, thank you very much

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Like a limp rag

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Thanks Mimma - good description.

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Fatigue feels like it is too much effort for my own skeleton to support me and I want to melt into the ground. I don't even have the energy to hold a hair brush up to brush my hair. All I can do is let my bed take the weight and rest until the fatigue subsides.

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Thanks Kath1, have you had support and help from your Drs in managing the fatigue?

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Hi I found my GP to be dismissive, my Rhum consultant is great but I haven't really been given any advice about it, all the advice I get is from this forum.

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This forum is the best support around in my opinion

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Thanks Kath, what did/ does your GP do that is dismissive and what makes your rheumy great please? (if you're happy to say)

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The GP said "we call it always tired syndrome" and said nothing more about it. The way they said it was as if they were making fun of me and not taking me seriously at all, like my symptoms aren't real. I have lost faith in the GP now to be honest. My rhumy is very genuine and kind, she takes my symptoms seriously and gives real support. She is to the point and very clear about options and treatment. The nurses are also fabulous by the way! When it comes to advice about fatigue I guess they don't really know what to say, it varies for all of us and I think we all need to work out how to cope with it in a way that works for us individually. That is where this forum comes into its own as we can share tips and advice. I think my rhumy looks at all the symptoms as a whole and although not perfect the treatment is improving things for me which is definitely a step in the right direction! Can I ask, what has been your experience?

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With advice given by GPs I mean

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So hard when you're made to feel these symptoms aren't real, about 20% of those reporting being misdiagnosed in our online survey were told it was 'in their heads' or hypochondria/health anxiety so you're certainly not alone. Does it change whether you report all symptoms to your GP now you say you've lost faith? That's a really helpful description of what makes your rheumy so good. What particularly makes the nurses fabulous do you think?

My experience has been very similar to many people on this forum. I've had lupus about 10 years and had some very positive medical experiences, some not so good and a couple of awful ones. My GPs, rheumy and other current specialists definitely care but haven't really given me any advice on fatigue management. I did have a lovely neuro-physio who went through the whole pacing etc. I think it was mostly the fact I had a whole hour with her at a time to learn exercises etc, not the exercises that helped particularly, maybe more the time to talk about the effects on my life and have someone listen sympathetically.

Very pleased things are improving for you :)

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The nurses are wonderful because they really care. They remember me, they say hello on their way past when I'm waiting for my appointment. They take me seriously and they do everything they can to help. They take the time to listen and I know I can call or email anytime I need advice on my meds. I don't really like to go to my GP now. They can't dismiss me so much because they have all the letters from the rhumy team but I feel like they are reluctant to get involved. I have lost count of how many times my consultant has advised something and said if your GP won't do it let me know and I will sort it. Maybe GPs just have so much to deal with they don't have the time or background knowledge to deal with it? Fatigue advice is minimal like you say but this forum is really helpful.

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It's beyond tired. I'm always tired, when people ask me how are you, the answer is always tired, but on the whole I've learned to pace and I schedule in rest to my day and provided I do this I cope.

However, life doesn't always let you schedule in rest and if I push myself to do a "normal" routine with my friends or family at their pace, I crash. I can feel it coming and I just have to sit down and I literally can't move anymore. I feel thoroughly overwhelmed and tearful and useless. And the day has to stop. My husband and children understand now (although it's taken years! ) And when I feel it coming I tell them and we look for somewhere to sit down.

If I know I have to do something in the afternoon, I rest in bed all morning. If I have a big day I rest the following day. This works most of the time. It took years of me fighting it and trying to push through and crashing, before I admitted to myself and made my family understand, that I wasn't being lazy, I was ill.

...I suppose it's all about the spoon theory really!

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I think that says it all 'I wasn't being lazy, I was ill'. How do you think it changed your management of the fatigue once you (and your family) realised that? Do you get help from the Drs in managing the fatigue?

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People recognize that scheduling a day is a necessary thing that EVERYONE has to do to manage their time, I now see rest as something that needs to be scheduled in to balance the commitments I have in order to function at MY "peak". I can get away with pushing it for a day maybe 2 if I've planned for it and by that I mean really resting up for it. However, I know I absolutely have to keep the following day/days free to recover or I will flare.

The thing is, ACCEPTING that what used to be your normal isn't any more, balance is all about constantly readjusting to meet that days circumstances, what was balanced yesterday won't necessarily be balanced tomorrow.

My family now know this and recognize that I'm healthier and happier and better able to function if I do this and they've seen the consequences of me trying to ignore my illness and push on. It never turns out well!

As for dr's helping with managing fatigue, I've seen various but one thing in common is that they've never quite been able to show that they EMPATHISE that pain can be managed with medication to some extent, but there's not a pill to cure fatigue and fatigue is the biggest most debilitating symptom of this illness that impacts the most on one's quality of life.

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Thanks soootired (apt name for this discussion!) How important is it for you to be able to be able to talk about fatigue and the effects on your life with your Drs? You say they haven't been able to empathise; is there anything they could do to do that better do you think?

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I think that to some extent they feel a little out if their comfort zone being unable to "solve" a problem. However, ignoring it's existence isn't the answer either. I suppose I'd like it acknowledged as the crippling symptom it is, Instead of being fixated on organ involvement or lack of, which is great but, fatigue is nearly as crippling.

If they could try to understand the impact it's had on my life, it's not just feeling tired or a bit over stretched and run down, it's so incredibly debilitating and has such a huge impact on our lives. We still have things we'd like, NEED, to do, families, jobs etc!

I was 41 when I began the diagnosis process, I used to feel I had to explain to them that I may seem old to them but could assure them that at 41 I certainly was not old and wasn't prepared to throw in the towel yet! It wasn't acceptable.

I'm now 47 which is even worse because I can practically see it in their eyes that I'm nearly 50 so it doesn't matter, I'm bound to have slowed down a bit.. but it does matter!!!

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Yes it definitely matters. A lot of people are saying just what you've summarised so well, that the acknowledgment is so important. Even if there is currently no cure or treatment, empathising - and listening - about the life changing impact really makes a difference.

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Fatigue to me is the feeling of a heavy cloak that is pulling you down - sometimes you can feel it lifting slightly. This feeling gives real hope that the cloak can one day be shrugged off.

It can also feel like you have a tap on you that is turned to full - every ounce of your energy is seeping from you leaving you empty of any oomph to do anything other than exist.

It takes over your thinking, speaking, formation of sentences and stops you doing the things you want to - just the thought of doing anything is overwhelming.

I am currently on the up and have improved from only being able to do something for about an hour before needing to rest - that included just talking to my family to now being active for the morning and evening if I rest for two to three hours in the afternoon. Pacing is the key but oh so boring!

Thank you for doing this.

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That's really well described Yellow5. Do you think you've got better with pacing over time? Is it something you struggled to accept initially?

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I think I’m still learning how to pace myself but with constantly changing symptoms it’s also a matter of adjusting the pacing to the symptoms - if that makes sense! I did and still do find it hard to accept the pacing sometimes and just rebel (usually with consequences!) as I don’t want to constantly have to make choices of what activitity I can do each day, I want to do more than I can.

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yes I think that's so common, rebelling against the constraints of our bodies and like you say so hard when symptoms aren't predictable. Thanks - that's very well described.

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I like the “tap full on” analogy. Many moons I ago I taught and that felt like the pupils/students just drained energy from your batteries. That was when I was young and healthy though.

Just walking the dog further than usual, to get him to the vet on Saturday, completely wiped me out yesterday. I battled to do it because the poor houndrel needed it badly. Today, it was again slightly further than the usual totter round the block, in order to pick up my prescription. I really hated myself for not allowing him to dally at some interesting sniffing spots, because I was very short tempered. Sometimes it still surprises me just how much something small can knock me for six.

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It’s constant awareness of every fibre, joint and organ in your body, no rest for the brain.

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Thanks chinchi, do you struggle to sleep when the fatigue is very bad?

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I can sleep when it’s just fatigue, but my sleep is full of vivid dreams and hot flushes so when it’s time to wake up I’m knackered. I can’t sleep when I’m in pain though.

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There's a beautiful market research technique called the Repertory Grid Method. It is used by us to elicit terminology from the consumer. It's a face-2-face method. And it's fab as it really drills down to the key descriptors in this case fatigue.

Do you guys ever conduct face-2-face? I am sure folk would be happy to participate.

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No we haven't heard of the repertory grid method but sounds very useful! Will look it up and if you can maybe message me any more information please we can see if we include in one of the planned studies?

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There is another technique called Laddering. And this gets to the root words. I have a PhD in market research. My background is in quantitative market research. We use qualitative (ie focus groups) as kick off points ONLY. The techniques I am talking about are quant and are based on supplying robust results. It upsets me greatly when I see articles published based on a sample size of 12 (ie focus groups).

I have published Rep Grid in a reputable journal, but of course we all remain anon on this site. So if you just punch repertory grid into google you'll get the gist. Likewise with laddering.

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Lupus fatigue impacts every aspect of my life. For all I am too tired to sleep through the night (crazy as that sounds). I wake up worrying about how shattered I am. It takes me twice as long as my family and friends to recover from any bug going around. I have a mortgage to pay, so I have to work - but I fall asleep in meetings or at my desk, on the tube or even in a queue if it's not moving. If I'm being driven any distance, I will keep nodding off. Sometimes I have to sneak off to the loo just to close my eyes for ten minutes so I can get through the next hour. I can't wake up in the mornings, and sometimes can't even make the effort to get up. It weighs down my limbs, sometimes even feeling like it's sitting in the pit of my stomach. I feel so leaden all the time. My eyes feel too heavy to open, and not just in the morning. Even if I have slept well, it doesn't make any difference; I'm still dozing half the afternoon. And it makes me so depressed: I used to be able to Morris dance from one end of my town to the other and now I'm too tired to walk upstairs. I cancel outings with friends because I'm too tired. Worst of all, it makes the pain so much worse. I have a broken neck, arthritis, gout, connective tissue disorder and SLE lupus; some of the pain is chronic but because of the degenerative changes in the neck, some is acute. I'm not sure the fatigue isn't worst.

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So hard living with it. Almost everyone in the online survey said that no matter what their organ involvement (and some had serious kidney/ heart/ brain etc damage) that didn't change their lives or bother them as much as the fatigue.

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For me Lupus fatigue is a unique fatigue. that sleep makes no difference too, if I had 23 hours sleep, I would still wake up exhausted most days. Everything feels heavy, even my eyelids, and daily activities are like walking through the thickest treacle. It is very frustrating, and one has to learn to pace out the day, it can be hard when you see the world moving around you at such a fast pace, while you move at a snail's pace.

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Thanks LupusKaren, the 'walking through treacle' description is so apt. How do you feel having to see the world moving faster? Have you had much help from your Drs with managing fatigue?

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Melanie, I have accepted the fatigue for what it is, but in the beginning I was very depressed. My GP is superb and has been my rock, I had/am having Counselling (not for Lupus), and all I can say is we kept coming back to one word 'acceptance', I found it a lot easier to cope when I didn't get frustrated and angry with the fatigue. For me, those who rush around probably have more stress than I do, going at a snail's pace, and I get to enjoy things in life I would have missed had I rushed around like before.

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That's great you've got a superb GP. Good to hear you have found some positives. How long did it take you to reach that level of acceptance please?

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Melanie, I was diagnosed in 2009, took a good 4 years to get to where I am today acceptance wise.

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Does this research on fatigue make sense to you guys? ncbi.nlm.nih.gov/pmc/articl...

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Thanks for sharing this miccika1. I personally think (and that's only my thoughts as a lupus patient rather than having much scientific knowledge on immunology!) that pro-inflammatory cytokines (the little proteins that change our immune and inflammatory response) are responsible for a lot of our fatigue. I think there are some biological therapies that target some of these and are used for other diseases so hopefully more research is going to be done into this area. The more we all highlight the damaging effects of fatigue, hopefully the more scientists, academics, Drs and researchers will look into improving this. Wouldn't a cure (or at least an improvement) for the fatigue be amazing? The researcher who discovered that would certainly be a hero and life-changer for so many.

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I would say that the fatigue is the symptom that most impacts on my life. I feel like I could sleep walking along and sometimes nod off mid conversation - friends think me rude ;-) However learning to work through it and not give in especially on a good day, yes doing stuff will make me need sleep but then the doing stuff also makes me enjoy life more. I'm just starting to realise this and its about weighing up and modifying your life to how you feel on that day for me, I had previously started to admit defeat. Now I'm listening to my body and acting on what it says rather than thinking it is all in my mind.

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Thanks poppypig, so for you it's all about the balance of managing to enjoy some things even if you know it will increase the fatigue? When you say now you listen to your body rather than thinking it is all in your mind, does this mean you used to think the fatigue was in your mind? Was there anything that made you feel this way?

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I think that Psych nurses make you believe that any physical problems must because you have depression and anxiety and as such psychosomatic. Sadly when you are in such a vulnerable place you trust these people and believe all they say is true. Fortunately I self discharged and now getting better mentally - a bit more every day.

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Thanks poppypig, so many people are saying this in our research, not about psych nurses specifically, but about being told the physical problems from these diseases are mental health/ psychosomatic. Has it changed your level of trust do you think? Very pleased to hear things are improving every day.

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Yes certainly this had massively affected my trust of health professionals. Thank goodness for my lovely GP who I do trust, but dread health appointments now.

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I don’t have lupus but several other autoimmune disorders. My mornings are the best once I can get out of bed and wait for the pain medication and coffee to kick in. Then around 12:30 everything changes. Suddenly I can’t think straight, the back of my head starts feeling fuzzy, heavy and tingling. I feel as if I can’t stand up or sit up. When I try to push through I get terrible nausea. Like many have said, it’s like pushing through water or maybe more like jello when you move. It’s not just physical exhaustion, it’s mental and emotional as well. It hurts to talk. I have to lay down every day for several hours. I don’t usually sleep, but just need to rest my muscles and mental faculties. Then I start to perk up some around 4 or 5, I try to make dinner and then the feeling returns but not as intense. So I only have a few decent hours every day.

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Thanks Goldyukr, that's a good description. How does it feel to only have a few decent hours each day?

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Very, very restrainiing and frustrating. Can’t get much done. My poor husband carries so much more than his share which makes me feel guilty. We used to be missionaries, living a very full, fast-paced life. Now I feel like a snail. 😊

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Fatigue. Its the utterly worst symptom some days but usually accompanies so much joint/bone/muscle/head/eyes/skin/EVERYTHING pain/inflammation. The whole body is crying out in exhaustion from dealing with this condition. That makes sense to me anyway. It can only do so much, take so much.. and it is struggling on empty, thats how it feels.. a car that has no fuel left, or the wrong fuel put in it.. It cant work properly, to say the least.

Lupiknits was really spot on. Lead suit.... wow. Perfect. Lead brain too... I just sit there... staring for ages... willing myself to get up or so bad just nodding off. Done this for decades...off and on... I didnt understand what was wrong... didnt tell anyone..didnt go to the doctors as wasnt brought up to do that. So glad I have since, had to. These days fatigue at that level is every day.. part of me wants to scream/shout if only I had the energy.. and in a flash in my head at that point I usually imagine throwing something breakable.. as I feel trapped inside my body...Im momentarily angry... then comes the plummet of extreme sadness and tears. After the tears I feel a little better... they are a release. I try and brush myself off inside, focus and wrench myself up from the bed or sofa. Im often on the brink of tears.. its just the exhaustion talking. You have to focus into positivity and reach deep down for energy. I use it to cook, eat, read - and, very importantly, communicate to others (especially on here) if a good day. Life is quite hard these days due to this... I want to go out, I want to garden, I want to have a relationship. I can no longer even try to do the latter... it doesnt work in any way. Those days are gone (had some good times previously though). My garden is crying out for more vigorous help.. and I only go out of the house if I really have to ie to yet another health appointment, after which I try and do something else like a small amount of shopping.. but then I can hardly walk, get a taxi, and collapse into the bed for a couple of days. Thats how it is right now, and Im sure it will improve... Its so confusing too.. why is this happening? But you know why as youve read about it, been explained to by clinicians... but still, its so isolating.. and, yes, on bad days, feels so ruddy unfair. Friends dont understand... how can they? You can lose them too... if they cant handle the husk of the person you used to be years ago. So you think what can I do to make it change... so a little bit of research and reading, reaching out and hope/positivity (a must have!), and then its back to resting your eyes, nodding off for a bit... and then its time to get yet another glass of water, to cook.. and feed the cat or whatever you have to do... (how those with kids, families, work and all sorts manage I just don;t know anymore), then bed, and before you know it, its another day.. and the same, but always with a plan to do certain fun/practical things the next day as you drop off to sleep. On waking its a case of ok I need to get downstairs to get some breakfast... and I can take 20mins or much more if a bad day to get my head focused/oriented/enough energy going and stretched/cracked/limber enough to get up out of bed to do that. Fatigue can make your life an extremely slow roller coaster or ferris wheel... of different day, same hurdles.. albeit of varying heights! Sorry if that was a bit negative... it was honest. Right now anyway... always the optimist! Thanks

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Thanks for sharing this DJK99, so well described and it really helps to get people's honest opinions - will hopefully raise awareness of how life changing the fatigue is.

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Youre welcome - its for a good cause. Also meant to say the fatigue used to come on like a train or like suddenly walking into a wall.. this was at work. I remember many times pushing pushing pushing dya after day in the very stressful relentless job I had (am now leaving) and suddenly the fatigue would hit me hard.. It was quite frightening.. as suddenly realised I didnt known if I could get home. It rendered me feeling utterly helpless, like all the blood and energy had left me... or as Lupiknits mentioned, like I was suddenly in a cement suit or something. I increasinlgy had to get the bus home rather than walk (which was crazy as Ive always been relatively fit) and often woudl have to have a little cry in the toilet and some food before I could do that. I had actually been tearful in front of senior colleagues through the years when I just couldnt control myself as wasnt strong enough. And I was a strong person generally in the past. All the best.

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The fatigue I feel seems to differ on different days. I'm fairly newly diagnosed but when I do get fatigued it's an overwhelming feeling, I have no energy and just feel so so sleepy. The description re wearing lead fits how I feel, everything is an effort but I do try as much as possible to do normal day to day activities.

I always make sure I get up at a regular time and pace my activities, participate in Pilates and yoga as well as trying to get outside and walk most days. I still work 2 days a week and on those days sometimes I feel I could put my head on the desk and just sleep.

Ironically the days I have this overwhelming fatigue I don't seem to sleep at night!

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Thanks Janet-Haslem, yes a lot of people are saying the insomnia is sometimes worse on the worst fatigue days when you desperately want to sleep.

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It feels like you have a mountain to climb although you have already climbed one that day, it's exhausting only sleep puts you right again. Although sometimes by going out you may be able to push through it. I work full time but don't have much energy evenings or at weekends just for light housework on Saturday and I will have to sleep on Saturday afternoons. Sundays I make lunch for the family, then back to work Monday, no social life.

I am off work at the moment following a chest infection, when I try walking my legs feel like they have sludge in them they are so heavy, I walk like an old women, I am 50.

I would love to do more exercise but most days it feels impossible. I was swimming once a week but since I stopped I can't summon the energy to start again after a day at work.

I hate that my son and daughter see me lying around and having to sleep so much.

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Thanks Blackberry17, I really hope your chest infection improves soon

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I have been reading all the descriptions of Lupus fatigue and cannot really add much more...leaden limbs, moving through treacle, too tired to sleep, etc are all so familiar. My excellent GP ( who joined the dots after presenting with random symptoms 23 years ago) and my Rheumatologist acknowledge the fatigue, but do they really get it? To be honest I find it difficult to admit to myself sometimes , never mind other people that I have been left with a phobia of driving because of the crushing tiredness and anxiety I felt on a few occasions driving home from work. Not remembering important numbers ( passwords, PIN numbers etc) when fatigued now means my brain instantly mists over as soon as I see a number as it’s ‘too tired ‘ to process it. The worst flares made all my extremities too weary and / or painful to support. I still travel with squashy cushions to lean on or rest wrists, fingers, and worst of all ‘wobbly head’ that is just too heavy to hold up.

However positivity really does help. When you have a good day tell everyone who is dear to you. They do get more moans and indifferent interactions from us than they probably deserve. I would definitely say eating healthy regular meals, staying out of the sun and walking daily is now routine for me and if I keep to this regime I do not feel guilty anymore giving myself a rest.

Luckily I am retired now. Good Luck all of you younger ones with family responsibilities..you WILL have better days and feeling resentful just makes the mind more exhausted.

By the way I am 65 and nightime sweats and daytime hot flushes are always worse for me when fatigued. Surely not still menopause?!

Fingers crossed for positive research !

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Thanks Zoe - mabel, good descriptions and so true to remember that better days will come

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I have bad fatigue despite being medically "mild and stable" I tend to use examples such as the fatigue that you get with flu, imagine how tired you'd feel if you didn't sleep for 48 hours, and anology to waking up feeling like you have a hangover .....most people will say yes I can get what it's like, and I then go on to say well that's a bit like my fatigue due to Lupus, and I've experienced that every single day for over 16 years

Fatigue due to Lupus has been the main reason I can not work I had to take medical ill health retirement when I was only 37 , as the fatigue/ exhaustion just makes employment impossible for me

I have to prioritise and pace every single thing I do

I've had to accept that I need way more sleep than a "normal healthy person" , so to parents I can compare that to the fact that children under 12 need lots of sleep too, to help people understand that 10 - 12 hours sleep is not excessive or "lazy" for me

I recently came across 2 ideas that I also find useful

A. Ideas regarding seeing chronic fatigue as "energy impairment", stamina impairment , "energy limiting chronic illnesses" I've joined this project as I think it's very relevant to those of us with Lupus

inclusionproject.org.uk

B. The idea of "useable hours" which I sometimes also use to explain my fatigue, what my life is like etc

.........

It may be useful to consider how many "useable hours " do you have in a day. Are there reasons for that number, do you have reasons you don't have, can't use, or don't use useable hours you physically do have,?

A healthy person has, an average, around 10 “usable hours” a day. These hours can be spent going to work, doing housework etc, cooking meals, getting errands done, social activities, and fulfilling other responsibilities

People like me with energy impairment have reduced number of ”useable hours

In my case the Lupus gives me less usable hours than a "normal" to start each day with (amount of sleep I've had/ or how well I pace myself can influence this a bit but not totally.)

I've had to accept I need more sleep than a normal person (I need a minimum 10 hrs to have any hope that I can "function" ), ...... Fortunately I can sleep some people have insomnia or very poor sleep due to pain etc, I also have to be really good at learning to pace every single activity and things I do at all times

Unlike most "normal people" just waking up, despite being able to sleep, I will feel very unrefreshed due to non restorative sleep, (In reality for me this means I don't really have much "usable hours" in a morning ever). On waking I can't even estimate how much energy / usable hours I'll have as my body is saying "non at all" and that I still need sleep.

Then basic morning routine like getting dressed etc take energy and so they use up some of my usable hours time ( most "normal" people things like getting a shower, dressed having breakfast etc hardly impact on their usable hours). I would say if I "fight through" my first few hours after waking I'm then a bit better and can try plan what activities I can achieve

I may have perhaps only 3 to 5 usable hours even on a "good day" with lots of rest between, and I have to pace how I actually use those hours I have, eg I may have my shower in the evening so it doesn't use hours at the same time/ "clash" with my morning routine time / energy I need just to get dressed have breakfast and do a few morning physio exercise stretches.

Also sometimes there reasons for the number of hours you have (eg less one day because you had a busy day the day previously), but other times it's just lupus unpredictability that leave you with low usable hours to start with

Pacing can also be needed in how you use your "usable hours"

eg you have 4 hours total but you really need 2 of them to go shopping / socialise that evening with your friends / work/ look after children etc ( you also have to pick which one to do if you have a choice)

There are also times that you can't use, or don't use useable hours you physically do have eg If I get depression then my mental health can mean I might wake with 3 useable hours but due to my mental health can only use 1 or 2 of those and just getting dressed and having food will use an hour of that. Or sometimes if I actually use 6 or 7 hours up doing something then afterwards perhaps even for several days after I have very few usable hours, and/ or I don't use up any usable hours as I need "recharge days" afterwards Plus recharge before If I can plan it that way as part of pace my activities Even enjoyable things like going on holiday, I have to recharge before and after a weeks family holiday, in addition to pace when on "holiday"

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I like the “usable hours” idea very much. Even more so now that the spoon theory has caught on to the extent that I’ve seen some healthy people say they “haven’t enough spoons” when they really mean they can’t be bothered, as in a**ed.

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The 'usable hours' is a brilliant way to describe it and plan. Thanks very much fabwheelie, that could help many people manage it and also explain it to the chronically healthy with seemingly unlimited energy

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Like walking through thick wet sand and quicksand, so hard going and you never know when you are going to sink (have to lie down or sit down fast somewhere or feel you are going to pass out) Everything you do has to be done in small phases followed by a short rest. Problem is when you are the sort of person who strives to get things done and can’t stand mess you can push beyond your capabilities and end up trying to recover for the next three days after one day of overdoing it! It is a horrible debilitating challenge and although most people try to understand they have no idea unless they have experienced it and I don’t expect them to understand. My heart goes out to young mums with lupus, and full time workers, I don’t know how they cope. I had to give up work, so it affects you financially as well as socially. It’s a part of our lives, not a good part, but a part we have to come to grips with and learn to manage without the frustration of feeling powerless and recognising that even in a small way we contribute to those close to us. It’s quite a journey.🌻🌻

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Thanks for sharing this dihealth - quicksand seems a very good description, so hard to live with

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I feel like I’m trapped in my body. For me my fatigue is always present with pain. You simply can’t force yourself to do things, caffeine doesn’t fix it, sleeping 10hours doesn’t fix it. It can get that bad that some days I can’t lift my head let alone feed myself. Sometimes it takes me 3 hours just to muster the strength to be able to get out of bed and go to the toilet. The slightest thing can make me fatigued to the point where I can’t stand. I remember far before I was diagnosed I was doing jury duty, sat in the front row with the judges eyes right on me, there was direct sunlight shining on me, and for some reason I simply couldn’t keep my eyes open although I had 9 hours sleep the previous night. My head kept nodding off, I was forcing my eyes to stay open and trying my best to keep my head upright but it was impossible.

Whenever I ‘overdo’ it the fatigue hits extra hard, this can be simply from washing up, midway through cooking, folding clothes away etc. I will get a severe headache, a suffocating feeling, dizziness, extra pain in my joints,nausea etc.

Drs think all my medication will help with the fatigue but it really doesn’t. The mental impact of normally being such an active person to drastically changing to the point where opening a bottle is impossible is severe, it’s not a ‘mind over matter’ thing, nothing seems to fix it.

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Thank you for sharing this. Do you feel some people/ Drs think it could be mind over matter?

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Yes, I do think people especially misunderstand it and are naive enough to think it can be mind over matter. I mean I’m 22 I should be very active, I’ve forced myself to pretend that I’m ok but then I either have a panic attack or collapse due to lack of energy so clearly it can’t be mind over matter. I feel as though Drs don’t understand how the fatigue and pain remains after being treated, they assume I will feel better but I don’t.

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For me my stamina drains away very quickly according to how badly I'm affected at the time. Even to the point that I can't hold a conversation. I don't feel sleepy but have no get-up-and-go. If my lupus symptoms flare up, wiping a kitchen counter can lead to me loosing the use of my arms for a time. It seems to be linked to ion channel myopathy.

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Thanks for sharing this Queenmab

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I totally relate to the spoon theory.

For me,the fatigue is by far the worst symptom to deal with. I've had spells where my skin is so inflamed on my face my hair touching it is excruciating, I've had flares where the pain on taking a few steps is a 10, but I can deal with these symptoms easier than the fatigue.

Fatigue has cost me my career, my social life and my enthusiasm for fun and enjoyment. I have to save every ounce of energy to just function for 60% of the time. I'm only 55, and for about ten years, I have been unable to do much after 6pm. I get left out of literally hundreds of events that my friends go to because of fatigue.

Fatigue is tired x 1000. Fatigue is your batteries just dying with no warning. I describe my fatigue as having nothing left in the tank. Fatigue is my least understood symptom, and my most hated one.

Excuse the expletive but F*** Fatigue.

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Thanks lupie46, you've summed up the challenges and the damages of fatigue so well.

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I'm going through a bad time at the moment..so I'm gonna keep this brief. I think of it as walking into a giant spiders web..invisible with a yucky feeling..once I'm caught in that web struggling is pointless because it just makes it worse..so I have to just accept it..or else!!! The more one struggles the tighter the web will become xx

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The more one struggles the tighter it becomes is a fantastic way to describe it. Do you find that if you push on it makes it worse?

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Definitely!! It can't be struggled against because I've learnt that it just makes me worse for even longer xx

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And where there's a web there's a spider!! N if she knows your there in the web she's gonna come over, wrap me up, n then I'm done for!! 🕸️🕷️Xx

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I would describe my fatigue as crushing exhaustion that can creep up and break over me like an enormous wave without warning. It has no respect for pacing either. When it attacks me, it affects every aspect of my life; from getting out of bed to self care, from sleep to sex, from moving my eyes to read or even trying to find the energy to smile or laugh at something that amuses me.

Fatigue has stopped me from responding to this survey until now as I had to parcel out my energy over several days of appointments and chores before I could face writing this. An eye test claimed all of my energy earlier (glasses now required). Lupus related fatigue has changed my life beyond all recognition.

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Thanks flap7, so hard for so many people as like you say it's changed our lives so much.

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I use the term fatigue as an umbrella term. Actually it comprises different elements. However, in trying to explain to friends and relatives, I have recently tried the following analogy: Imagine a person as a car and its gearbox. A person in good health who keeps fit has five gears; a person who is super fit, etc, has six. A person in poor health has four. I, and others like me, don't even have four gears. On a really good day I have periods where I achieve third. This may then result in me only having second or even first the next few days. For the most part I only have second. On bad days - if I have overdone things previously, am not well, or for no discernible reason - I only have first. This seems to help people imagine things better, particularly when I say 'If you were to go out to the car now and find you only had third, or even only second, where would you go?' The back roads, certainly no distances, or basically just the local village or nowhere some days. Well, that describes my life!

Once the basic concept 'gets through' some people are interested in the different facets of the experience I call fatigue. I should say that I have a number of long-term conditions, so it is not just the Lupus which makes this a daily issue. For example, I also have Antiphospholipid Syndrome (APS), Fibromyalgia, and a form of orthostatic intolerance (OI), which are of course associated with fatigue. Anyhow, my struggle with 'fatigue' includes the following experiences: simply feeling as though I am going to fall asleep and not wake for years; other times feeling so extraordinarily heavy and being incapable both physically and mentally, having to lie down and then falling asleep; at times, a sense of the life draining out of my feet (it is as though I am dying - the first time this happened I actually thought I was but couldn't get up to get to a phone) and with severe pain in my right neck and side of head - I literally have to lie down instantly (however I have recently found that a couple of Paracetamol largely relieves this 'deadening' within an hour, for some reason). Most frequently however, 'fatigue' for me is a 'not fully there' experience - the gear box analogy really - which currently affects my cognitive abilities more than my physical (although by that I mean that I can get out of the house for short distances, perhaps do some light gardening or housework. Not what most people would term 'exercise'.). Under this facet, if I go beyond my modest limits (which includes exposure to loud noises, lots of people, chemicals and strong smells, etc) I become very clumsy, forgetful (including using wrong words, etc), can't figure things out logically or understand instructions, as my brain seemingly 'shuts down'.

Actually, I think this is probably what is happening - both APS and OI affect blood perfusion within the brain. Anyhow, once this happens I certainly can't undertake anything physical beyond doing the very essentials of life. I then have to wait and recover - which can take hours, days, or even weeks - depending on what I have overdone/been exposed to. I have been like this for years but have worsened after very major surgery a few years back. As one respondent has said, it is like wading through treacle - which some days is only ankle high, others it is up to your waist.

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Thanks MrsMouse, that's so well explained - both the cognitive and physical effects

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I should also say, along with a few others here, that fatigue and sleep difficulties seem to be a 'married couple' for me. It takes me anywhere from 30 minutes to 3 or 4 hours to get to sleep. And not infrequently I experience flashing lights at the side of my eyes as I lie there in the dark, and what I think is probably sleep apnoea, as I try to drift off. If I lie there awake long enough I may also become very cold and shiver uncontrollably, for no apparent reason. I could go on and on. Interestingly, this issue doesn't tend to happen when I am experiencing the other types of fatigue I have described e.g. the feeling very heavy. Then I go to bed and I go to sleep. But when I am living with my 'usual' fatigue type, which is 90% or more of the time, then sleep onset is a major part of the picture.

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Wretched and crippling. Sometimes dangerous. Fatigue is not the same as being really tired. It’s it’s own beast. It can quickly take everything away.

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