So I still don't have any diagnosis as yet. Currently on the waiting list for a new consultant. In the last 3-4 weeks I have been really struggling with the constant fatigue. Regardless of a good night's sleep. It's just a horrible feeling of complete exhaustion with zero energy to do anything and when I do go out for a few hours it completely drains me. Is this just a symptom and is there anything to help alleviate it?
How to deal with fatigue? : So I still don't have... - LUPUS UK
How to deal with fatigue?
58 Replies
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Hi I used to suffer really bad with fatigue could not work past 2 o’clock jelly legs would set in I would trip up due to leg weakness but the fatigue destroyed me I really feel for you however my meds got sorted and now I am probably 80% better on the fatigue and 50% better on the joint/muscle pain what I’m trying to say is there is light at the end of the tunnel unfortunately to get methotrexate and hydroxiqloiqin ithink it is only proscribed via the hospital
• in reply toIanrussell69
Hi Ian thanks for the reply. Sorry you were suffering so badly but glad you got meds to help. I am really struggling with it now but I am on the waiting list so just need to wait i suppose. I was thinking about going to my gp about it but not sure there's much she could do to help.
I get terrible fatigue and nothing helps. I even saw a psychiatrist who was supposed to help me pace myself but as I don't know when the fatigue will hit pacing doesn't help. I get mental and physical fatigue and although I feel tired all the time I also get extra fatigue just randomly hitting at any time. I just do what I can when I can.
• in reply tosuzannah16
Hi suzannah. That's for the reply. Sorry you're still struggling with it. It's such a horrible feeling isn't it. I'm just hoping it passes as other symptoms have gone and not came back. The last few days have been awful. So exhausted and drained. Do you think it's worth while speaking to my gp or do you think there's not much they can do to help?
suzannah16• in reply to
IT can be different with each of us so what works for one doesn't work for another. See your GP and anyone else you can you just might find something that works for you. some find hydroxy helps but as I can only tolerate one tablet every other day I don't think I am taking enough for that to help me. good luck
• in reply tosuzannah16
Hi suzannah. I was going to hold off seeing the gp for another week or so in the hope it passes. I am on the waiting list for another rheumatologist so that's probably my best bet?
Please can I ask why you can only take one every other day and do they make you feel ?
as they want me to go up to 2 a day not sure how I feel about this
I get severe dizzy spells with them, but if I can get the zentiva brand I am able to tolerate one every other day. When I took them everyday I had 4 dizzy spells in one night, each time I woke I felt like I was falling off the planet. My rheumy says a little is better than none.
Hi Sophie2009 I think my hydroxychloroquine is kicking in now as my fatigue is in waves as oppose a constant state of 'Zombieness' if there is such a word if not it's a new Lupee word. I also take Braggs Apple Cider vinegar two teaspoons in warm water first thing in the morning before eating or drinking. I go to hydrotherapy once a week for joint pain, I'm on a course of six weeks. I try and do a pilates and yoga class once a week and I like to meditate which is easy to do when your lying on the sofa or in bed.
Coping with chronic pain adds to the feeling of extreme fatigue. Last week I felt a wave of exhaustion coming home from the hospital. A member of the station staff approached me to ask if I was okay. I said yes however he asked if I was sure so goodness knows how I looked. Thankfully, not all days are like and today this 'Mothering Sunday' has been a day of pacing myself and relaxation. No pushing myself today. Tomorrow's another day.
Hopefully, once you've been prescribed the right medication you too will have more better days than 'Zombie' days. Take care.
• in reply toKeepingUpBeat
Hi and thanks for the reply. Zombiness is exactly how i feel just now. I have read how exercise is supposed to be helpful but when I do go out for little walks etc i am even more exhausted. Hospital appointments and drs appointments are mentally and physically draining too. I find it hard trying to explain to other people who don't suffer such tiredness. Is it worth a visit to the gp? As I am already on the waiting list for a new consultant.
How long have you been on HQ, I started it in January, and feel worse! I don’t think they are agreeing with me but I take them in the hope of freedom from this misery x
• in reply toLisalou19
Hi Lisalou. I'm not on any medication at the moment. Still in the process of trying to get a diagnosis. Currently on the waiting list for a new consultant. So that might be quite a wait unfortunately. Sorry you feel so unwell even on medication. Sending hugs X
Sara_A• in reply to
It might be worth seeing the gp, have u had any blood tests taken to look at other things as there may be other factors that are contributing to making u feel so rubbish. U probably have.
If u see any of my previous posts I've complained a lot about fatigue! As it's not something that is easily treated u cant just pop a pill just for that. Like others say there are meds that help and some people are lucky and they really help.
I also get the very sudden awful severe fatigue which is so debilitating which is just the worst ever. I feel like I could lay down on the pavement and go to sleep.
Anyway I hope u soon get seen x
• in reply toSara_A
Hi sara. I have had bloods done recently. Thr only thing that showed up was my lymphocyte count is even lower. My gp called and thinks it might be helpful towards getting a diagnosis. Aw sorry you feel that way. It's just awful isn't it. It just kind of hits you eh X
The Dermatologist put me on 400mg daily hydroxychloroquine in October 2018 while I waited to see the Rheumatologist in December. I started feeling more energised two-three weeks ago. I was told it takes 6-12 months before you really start feeling the benefits and I'm hoping to see even more improvement but I understand this drug is not for everyone. I've noticed weight gain which could be due to reduced activity. There's been changes in my eyesight i.e. intolerance to bright light for example I can no longer go from dark to light without shield my eyes with my hands with gradual release. The headlights of other vehicles at might I find too much. I get blurred vision and intermittent sharp pains in my eyes. I don't know if this is related to the medication.
Oh gosh please get your eyes checked or check in with your rheumatologist as this medication can affect your eyes!!!! You have to keep on top of that.
I can see that it has taken a while for it to kick for you, i was increased to 400mg 3 weeks ago, and I’m loosing so much weight , they are playing havoc with my tummy x
Yes, please go to an eye doctor and tell them you are on hydroxychloriquine. A side effect of this medication is it can cause changes in the eyes and a form or retinoppathy, and you really should have a check up when you first start taking it and again at least once a year to make sure there is no sign of this problem. They can tell by looking inside your eye whether this side effect is happening. A side effect that his rare but dangerous if you continue to take this medication when it occurs.
Sorry I was hoping keepingupbeat could let me know how long she has been on medication for ?
It’s a tough old road Sophie, but you keep pushing through and you will get there. My doctor told me that I should never sleep when fatigued, but it’s difficult to stay awake feeling so rubbish. Fatigue strips you of everything good. I find it easier to just close off from the works and sleep!!!!!! X
• in reply toLisalou19
Hi Lisalou. I tend not to nap through the day as i probably would struggle to sleep at night. It is a tough road and it's only been a year since this all started. So probably a longer road ahead. Do not work? I have been off since July last year and I will be losing my job soon on grounds of incapability X
Lisalou19• in reply to
I’ve been off since January. I tried so hard to keep going but I was coming home and passing out with exhaustion and cognitively I couldn’t function.
I’m a single mum to 3 kids, it wasn’t fair on them.
I wanted to be a success for my children, but this illness has taken a hold on me! God knows what the future will bring but for now my children need to see me in a more positive light x
• in reply toLisalou19
That must be so difficult for you with 3 children too. I have a son who is 17 and that's hard enough. I was forcing myself into work when this all started and my weekend were spent in bed through exhaustion and feeling so unwell. Can I ask how long it took for your diagnosis? X
Lisalou19• in reply to
I’m still in the process of getting a firm diagnosis but currently logged as UCTD. Symptoms started 15 years ago but I managed. Then in 2013 I fell pregnant again. During my pregnancy I felt amazing and believed it had all gone away. Until 9 months after my son was born the illness was back, but a lot more worse than before.
So from 2014 - 2018 I went all around the houses. I was sent to mental health in 2016. August 2018 I paid to see a private rheumatologist, who confirmed I was unwell. They keep telling me I’m rare as I have such a wide spectrum of symptoms, from skin rashes, nose sores , nose ulcers, hair loss , dry eye, fatigue but my bloods are not giving the answer. Although I have Mysiotis anti bodies. I recently had some skin biopsies done, hopefully that might shed some light x
• in reply toLisalou19
Aw i really feel for you after such a long time. I am the same with my bloods just now. It's very frustrating isn't it. I saw a dermatologist and endocrinologist who both suspect lupus. But my rheumatologist dismisses everything. Hence the reason for a second opionion X
Lisalou19• in reply to
The top doctor I see suspected lupus and my bloods still said no! But he didn’t dismiss me as I was fortunate to of seem him a couple of times with visible symptoms. You just have to keep pushing through. At the end of the day for me it isn’t about putting a label on it, it’s about getting the right medication to live a better life x
Hi it was same for me , until I had a skin biopsy of my rash and that confirmed lupus , hang in there honey x
I am the same have been for 10 years,no help from the blood tests, but getting so bad was being admitted to hospital, my gp decided enough was enough, so put mr on azamapriathine theyre taking the edge off ,still in pain and fatigued but not as dramatically, but my hair grew back thicker within a short time ulvers in nose and mouth better .
I need something to help my hair, it’s so thin now 😔
X
Mine was getting so thin , but my meds sorted it , i saw a difference within a week really amazing, im still not fiagnosed eith lupus although ive been told it cant be anything but , so my gp has doagnosed auto immune disease, the tablets are a great help , still not perfect but better than before. Dont loose hope keep fighting
• in reply toAysheawatthey
Hi I can't sympathise with the thinning hair but mine has completely changed texture. Had always been in good condition. It seemed to change instantly. So dry and brittle and breaks easily. Nothing seems to help. Did you find this too? It affects my self esteem.X
Lisalou19• in reply to
I’m getting my hair cut off tomorrow , nothing is helping so I’m guessing if I chop it off that might encourage stronger hair growth. My new hair that grows through is totally different in texture to my normal hair. It’s sooo curly. I will let you know if chopping it helps promote better growth x
• in reply toLisalou19
Hi Lisa. I hope that helps. Keep me posted. With me though it's more my scalp and roots that get the driest. Like i've had an electric shock when I wake up. I get it trimmed often so the ends are fine. It's frustrating as no products seem to help, especially if it's an internal problem X
Lisalou19• in reply to
Yep I look like I’ve been electrocuted!!! It’s difficult to tell if the new hair is breaking and causing thinning or if my old hair is breaking. I’ve got length but no thickness . My hair is always tied up, I don’t bother wearing it down no more as it feels so thin. Most likely looks it too 😔!!!! I’ve always had such beautiful thick hair it’s a hard symptom to digest x
• in reply toLisalou19
Aw i really feel for you. It is difficult when it affects our appearance too. I hope getting it cut helps. I am the same (not the loss of thickness) but my hair was always soft and in such good condition. I often wondered why it changed so dramatically and seemingly instantly. This was maybe an early symptom? As it was a few years before the other symptoms appeared. Sending hugs 🤗 X
Imom• in reply to
Hello. I was surprised to read that your dr said not to nap. If you are that tired your body is telling you something. I find a half hour nap midday helps me through the afternoon, as I suffer from fatigue too. I don’t nap too late in afternoon thoughts it will keep me from falling asleep at night. A small nap is better than struggling with the zombie effect!!
• in reply toImom
Hi no my gp never said that. I haven't spoken to her about it yet. I have an appointment this week. But not sure how helpful that will be. I guess it's just part of my other symptoms and it's just gotten worse over the last 2-3 weeks. I don't have a diagnosis of anything yet X
Imom• in reply to
Sorry I misunderstood. I suffered from extreme fatigue and that is when I was diagnosed with lupus and other autoimmune diseases. Plaquenil eased the symptoms and fatigue. Good luck to you with your diagnoses. Warm hugs!
• in reply toImom
Hi Imom. That's ok. Thanks for the reply. The fatigue is a struggle isn't it. I find mine gets worse mid afternoon or when I do anything physical. Even just short walks. Did it take a while for your diagnosis of lupus? Thank you and warm hugs back 🤗 X
I’m so sorry to hear you’ve been feeling like this. I have felt like this a lot in the last few years and always put it down to my automimnune condition. After being on mycophenolate for a while, I decided I wasn’t happy with this level of medication and I started on hydroxychloroquine. 3 weeks of taking that, I developed a rash so had to stop immediately. However whilst my rheumatologist was waiting for the symptoms to go, the blood tests revealed a really high amount of the virus EB which causes glandular fever. Have you had blood tests to rule this out? As I say, it wasn’t the first time I’d felt like that but just seemed coincidental that the bloods showed glandular fever. Hope you’re better soon x
Hi sophie I have mild sle and fibro. On usual drugs. In your case the GP is a good idea if nothing else they can check for defiences of vit D and anaemia which are related to sle. I'm on daliy VIT D 1000 if I stop taking I'm back to feeling fatigued. Give the GP a try for sure. Hope you feel better soon 🙂
• in reply to
Hi derby. Thanks for the reply. I already know I am deficient in vit d but iron levels are good. I have been supplementing vit d for a few months now. So maybe worthwhile getting the gp to check my levels again? I just don't know anymore.
eekt• in reply to
Worth having GP run all the normal blood tests plus Vitamins D3 and B12...an OTC supplement won't be enough sometimes...I'm prescribed 25,000 VitD units/week for six weeks as a loading dose - despite taking a supplement I was 'insufficient'. xxx
• in reply toeekt
I had my vit d tested privately a few months ago and I think it was 25. It's only tested by the Dr's here every year so too soon for them to test again I think X
eekt• in reply to
EEEK! Below 50 is insufficient...25 must be very low...if it was a private test, NHS could step up, test and prescribe? ...though it took me three years of trying (Scotland)....otherwise, something for your new consultant...all the very best! xxx
I found the key to managing my tiredness involved several changes. You have to pace yourself and if there are things you know cause stress (which worsens autoimmune conditions) try to avoid them or minimize them. You don't have to actually sleep, but you do need more rest, so try to find ways to work those restful times into you day and lie down for a bit and read a book, watch TV, anything that is relaxing. Don't push yourself doing too much, and listen to your body when it feels tired. Take a rest when it does.
There are also triggers that worsen it. With lupus, for many it is sunlight so don't sunbathe until you have a diagnosis, and wear sunscreen and cover up in the sun.
Avoid alcohol and anything that dehydrates you. Mild dehydration can lead to feeling tired. Get the recommended amount of water a day.
And extremely important, recognize that not every symptom is lupus or autoimmune driven. Get your thyroid levels and vitamin D levels checked as a deficiency can lead to tiredness, and those deficiencies are very common.
I find a good strong vitamin a day in general helps with tiredness. Vitamin B deficiencies can lead to tiredness too.
Sleep apnea can also make you tired during the day. Do you snore or are you overweight. That can contribute. If you suspect you are not sleeping well, a sleep study may show apnea and they can treat that.
• in reply toAimeeA
Hi Aimee thanks for all the helpful information. I do know I have vitamin d deficiency but supplementing that so not sure if it's improved any. My thyroid levels have been recently checked and they're fine. Apart from high thyroid peroxidase antibodies. But apparently that shouldn't cause any symptoms. I'm not overweight but I was underweight. As I don't have much of an appetite most days but try to eat what i can. X
Hi Sophie
I’ve got a couple non medicine tips I swear by, ive had lupus since 2011.
Like Aimee says rest when you can.
Change your diet completely,look up worst foods for lupus and ditch those. Look up best foods for lupus and add those.
Cut out carbs and go gluten free. Lots of raw foods and leafy vegetables,
Change little things in your house that make you walk too much. Sit down whenever you can even if it’s to brush your teeth. That way when you need to stand it’s ok.
I know you are worried about not sleeping at night but try just for 1 week: wake up early. Then if possible sleep at midday or before (not too late) for for say 30 (ish) minutes - you’ll soon learn the right amount your body wants. Then when you wake in the second half of your day do some exercise. I know you won’t want to but whatever you can even if it’s a 5 min walk. Get your heart rate up. Then bit by bit you’ll feel stronger.
If this doesn’t work now, revisit this regime when you have your meds it may be easier. Gentle exercise really helps when it’s not too taxing.
These tips wont get rid of fatigue unfortunately but i find it does work. Good luck
• in reply toWolverine77
Hi wolverine thank you for the tips. I do try to get out when I feel up to it but even short walks for 5 mins completely drain me even more. I'm at my Dr's on Wednesday so will see what she says. I'm in the process of trying to get a diagnosis. That in itself is emotionally and physically draining X
I know. I appreciate its awful for you. Keep your chin up and I think try and be grateful for the little things. I always try to think happens life could be much worse. I hope you get clarity soon xx
• in reply toWolverine77
Aw thank you. I know things could be a lot worse. I think it feels worse because up until last may I was perfectly fine. Worked a full time job which was very physical. I have been signed off work since July. Can I ask if you still work? X
Wolverine77• in reply to
Oh I see so you’re worried about money now as well. It’s tough for you. I do work. I was doing a physical full time job on my feet a lot 5-6 days a week. I had to cut down. Now a few years later I work 4 days a week. Sometimes I have to push myself and do more when we’re busy or short staffed because you don’t want to always say no, so it’s hard, I have kids as well so it’s always a juggle or a struggle! it’s impossible to find a perfect balance but it’s manageble. Some days are good. Some are bad.
I feel lucky I can work though that so it’s ok, try not to be too hard on yourself. Find something to keep yourself occupied even if it’s little bits of craft or whatever. Anything to sink yourself into to pass the time or else your head will run you ragged. It isn’t forever. It will pass and get easier. xx
• in reply toWolverine77
Hi money is ok just now. I had to go to a work capability assessment and they decided I am unfit for work or to look for work so I will get a bit extra. Not that I want to apply for benefits. I was doing jigsaws and i have some of the coloring books to do. I also have a son. He's 17 not but still hard work. Although he is being a bit more helful with me now. X
Progesterone only birth control pills helped my fatigue. Im taking norenthindrone 10mg. The only important thing is to take it at the same time every day otherwise hormones get messed up again.
• in reply tomiccika1
Hi thanks for the reply. I am at the Dr's this week so will see if she suggests anything X
Interesting, I tried this approach myself after seeing a pattern in my monthly cycle and thought this could help. But it made me really sick 😔 anything with hormone doesn’t help and I so wish it would or that they would agree to a hysterectomy x
there are different types of hormone pills. which one did were you taking that made you sick?
I can’t actually remember now it was so long ago, but it was progesterone only pill.
when taking progesterone only, estrogen still goes up and down... i'm thinking of trying low estrogen plus progesterone which would make estrogen stable. SO far it looks like nobody solved for fatigue although this is what people report as the most bothersome issue :(. To me progesterone helped but I still have bad flares every two months or so. before that, I had every two weeks or so...
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