Sleeping all day once a week. : Hello, Would anyone... - NRAS

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Sleeping all day once a week.

Azzure profile image

Hello,

Would anyone have any advice please? I currently take 22.5mg methotrexate and hydroxychlorequine. I work full time but once a week I end up sleeping all day, my body has not been able to wake up until 5pm, is that normal with RA does anyone else go through this? I don’t drink alcohol, I go to bed around 11pm. I almost feel ashamed that I physically can’t get up and sleep all day once a week.

Any suggestions would help me.

Thank you xx

54 Replies

Some days all I do is sleep as my fatigue uss so so bad. I was when on mTX really bad for 48hrs so much so I had to change hours of work so off for 48hrs after taking it.Sleep and fatigue can be a huge part of RA. REST REST REST was te RA nurses mantra at me at the start which I ignored as I thought no way would I sleep and rest as always a busy person.

I spend my life trying to stay awake or fighting fatigue x

Azzure profile image
Azzure in reply to Deeb1764

Thank you Deb for your reply knowing I’m not alone. I wake up from 16 hours sleep and will still want to be back in bed a few hours later. X

Deeb1764 profile image
Deeb1764 in reply to Azzure

I have days it is crippling but been told as always flaring it is hard to keep control of it plus I have fibro and a few other autoimmune illnesses .

Azzure profile image
Azzure in reply to Deeb1764

I got told I had fibromyalgia but I don’t have pain as such anymore since being on methotrexate but what I would call dull ache in hands and feet now and again. Best advice I need to give myself is we need to be kind to ourselves. X

Is there any pattern? I’m wondering if the methotrexate could be playing a role. I take mine on a Friday and I think the combination of the medication plus work makes me soooooo tired on Saturdays. What time of day do you take the methotrexate?

Thank you Crashdoll. I took my methotrexate on Wednesday so 3 days ago and luckily I’m not that tired the next day, it seems to be on the weekend when I can have a lay in. I never plan to stay in bed all day until 5pm that’s a bit much ! X

Another lady on here J1707 and I call it Rip Van Winkle days.

J1707 profile image
J1707 in reply to Deeb1764

Yep I’m the champion Rip van winkle 😴

I have this trying to get off methotrexate but hitting a brick wall

I have bouts of fatigue.. this word doesn’t come near to explaining it . I have weeks of sleeping on and off. Once I slept 36 hours solid . Hubby thought I died. For me it’s due to active RD . I have fibro too but don’t suffer the horrendous pain some do. Fatigue / stiffness and skin sensitivity.

Oh the joys.. I can’t drive with fatigue it’s too dangerous and I can’t participate with the family..

Azzure profile image
Azzure in reply to J1707

36 hours but I can believe it you poor thing. I think my RA is active just a dull ache it is in my wrists and hands. It’s not over painful but I know it’s there I don’t feel right if that makes sense. I should take naproxen more often because it does help but don’t like taking pain relief.

J1707 profile image
J1707 in reply to Azzure

I’m the same little pain but mobility poor . I can’t take nsaids wish I could. I usually have a depo injection and it really makes a difference. Ask your clinic you might get some relief x

Your husband thinking you were dead I can understand that !! I didn’t answer my phone all day people wondering where the hell I am!

Hello Azure. I remember having to regularly sleep the clock round when I was younger & working very hard as a nurse. You don’t say how old you are or give an indication of lifestyle. RA does carry a lot of fatigue, but just to err on the side of caution I would ring your Rheumy & mention it. That’s what they advise us to do with any concerns, to be on the safe side. Best wishes, let us know how you go on 😊

Thank you hobbledehoy for your reply you are very kind ! 🤗

I am 51 my lifestyle is quite busy, live on my own so do everything myself.

I have complained of fatigue for years to Rheumatolgy they don’t do anything or suggest anything. I have been prescribed Amitryptaline recently and I think that is helping my mood and relaxing me.

Feel tired a lot of the time. And find I have one day a week when I find it difficult to do anything. xx

Rarely have that consuming fatigue since I’ve been on Tocilizumab. However, methotrexate did make me unable to function and extremely fatigued for several days after taking it. It seemed to be that I lost 3 days a week with it.

Welcome to the sleep club. I've just learnt to embrace it. I set a timer and allow myself sleep time and not feel guilty about it. I find sometimes it is best not to fight it.

Sorry you're struggling. I'd say have a think about whether the MTX is helping with the other symptoms enough to warrant the loss of a day to extreme fatigue . These meds are supposed to restore at least some of our quality of life, not chip away at it. Fatigue SUCKS doesn't it.

Same here, ot at least used to be, first off have you spoken to your doctor about this yet?I get the "patent", access email every month. If you live in the UK it's connected with your online access to your doctors services.

In this they offer health tips and advice backed by the NHS. A few months ago they had a thing about taking creatine monohydrate, it's normally used to help body builders perform better. Ive done a fair bit of research on this in theory anything that improves our natural Immune system and builds helps build mussel and done density, helps fight ra along with many other health issues.

To cut a long story short I've been taking it for six weeks now, and it's eliminated my exhaustion/ fatigue. As in I wax falling asleep again on the sofa, when it arrived I took two tablets. Half anhour latter I was wide awake and wanting to do stuff. I've only had one day of needing to sleep but I had a very painful night and was fighting off a bug.

The brand I bought recommended does is 6 tablets. For myself and the reasons I'm taking it I've found 3 tablets workbest for me.

It's difficult to say if it's reduced the pain and lack of mobility in my hands as the weather has improved, this normally brings some relief. I citainly feel better, a lot more energy and I can move my hands without so much pain.

The brand I bought has added vitamins alpha lipoic acid, D3, B12 and zinc.

I assume you've had your blood tested for vitamin D levels ?

Please note, all the resurtch ive done says this is safe to take but follow the instructions given. Don't take more than suggested and drink plenty of water.

If you do think about taking this do your own research and talk to your doctor. I'm not taking any medication that can be effected by creatine monohydrate.

Hope this helps if you do try it would be interesting to see how you get on.

Azzure profile image
Azzure in reply to Tourk

Oh wow thank you Tourk that is so helpful ! I will look into Creatine. I am going to ring my Rheumatolgy secretary and ask for an appointment. 22.5mg is not doing it’s job anymore it can’t be to have this fatigue and dull ache all the time in my hands. I really appreciate your reply I will keep you posted. When my rheumatologist retired 2 years ago I met with my replacement consultant and I mentioned my fatigue AGAIN the her response was we won’t offer you Biologics due to cost. I never even brought up the subject about Biologics so I am unsure why she would say something like that. I need to ring them I work full time and I’m struggling. X

Tourk profile image
Tourk in reply to Azzure

Cost is a excuse that has always seemed rather thin. The amount of money that is wasted within the NHS is shocking . Let lone when drug companies over charge.Good health shouldn't be profit based.

I had a spinal injury in 1984, there is nothing I can do about, but things like ra and trigger thumb anything that improves / Strengthens my immune system helps.

We are what we eat, modern food is lacking in many ways, add all the chemicals and toxins on our food its no wonder we feel dreadful.

There again a strong immune system helps our bodies cope.

Please do let me know how you get on.

Azzure profile image
Azzure in reply to Tourk

Oh wow thank you Flinda that is so helpful ! I will look into Creatine. My vit D are fine as I take supplements. I am going to ring my Rheumatolgy secretary and ask for an appointment. 22.5mg is not doing it’s job anymore it can’t be to have this fatigue and dull ache all the time in my hands. I really appreciate your reply I will keep you posted. When my rheumatologist retired 2 years ago I met with my replacement consultant and I mentioned my fatigue AGAIN the her response was we won’t offer you Biologics due to cost. I never even brought up the subject about Biologics so I am unsure why she would say something like that. I need to ring them I work full time and I’m struggling. X

Hi AzzureI work every day, doing six hours and I usually spend Saturday morning zonked out.

I am afraid fatigue is the hardest thing for the rheumatologists to fix. Could you try going to bed earlier? 11 pm is when I used to fall asleep but these days it is rarely after ten and often nine thirty. I need to sleep for around 2 hours longer than I used to.

I changed my hours at work from seven and a half to six and it helped a lot, although I appreciate that as you are on your own you will probably need a full wage.

You shouldn't feel ashamed, around a third of people with RA end up giving up work within five years. It's a difficult and tiring condition.

Best Wishes

Jennifer

Azzure profile image
Azzure in reply to JenniferW

Thank you Jennifer it is hard isn’t it. Yes working less I couldn’t afford the drop just yet as I have a mortgage on my own. 9pm bedtime for me but I do believe my RA is not being controlled I will need to make an appointment with my consultant. They have zero interest in the fatigue but what they don’t realise is that it is the disease at work because why would we sleep for this long if it wasn’t! X

weymouth321 profile image
weymouth321 in reply to Azzure

HMRC used to pay one Disability subs , I think it was called Working Class Credit then .. ? when one had to reduce their working hours , due to being classed as Disabled - and staying in their current job , I hasten to add.Very straight and quick process

I claimed this myself , for a few months , several years ago ( I was diagnosed with rheumatoid arthritis 2009 and was working full time as a care assistant at our local nhs hospital )

Just a thought , but do look into this .

Azzure profile image
Azzure in reply to weymouth321

Thank you very kind advice. I think nowadays because I can walk and put my knickers on they would tell me where to go!! 🥴

I'm so glad you posted this - really interesting to read this is a common thing but, like you, my Rheumatologist doesn't show much interest or offer any solutions. Some days I wake up and have no idea if it's dawn or dusk!

I'd say at least half of my life is spent asleep - it's uncontrollable.

My mind kind of goes into melt down, everything is distant, I talk absolute garbage, totally lose concentration and I just can't keep awake.

Plug well and truly pulled.

It's embarrassing when I travel on holiday as I can't manage a full journey on my own anymore.

Just need to sleep a day or so and then emerge.

At least it's predictable.

This is by far the worst symptom of RA for me (on the meds).

Difficult for others (who are wide awake most of the time) to understand.

I probably feel that level of awakeness once day a month, if I'm lucky, and for that small window I feel like my normal self again.

The contrast is massive, as I'm sure you know.

So, many thanks for the question. x

Azzure profile image
Azzure in reply to Flinda

Oh wow thank you Flinda that is so helpful ! I will look into Creatine. I am going to ring my Rheumatolgy secretary and ask for an appointment. 22.5mg is not doing it’s job anymore it can’t be to have this fatigue and dull ache all the time in my hands. I really appreciate your reply I will keep you posted. When my rheumatologist retired 2 years ago I met with my replacement consultant and I mentioned my fatigue AGAIN the her response was we won’t offer you Biologics due to cost. I never even brought up the subject about Biologics so I am unsure why she would say something like that. I need to ring them I work full time and I’m struggling. X

Azzure profile image
Azzure in reply to Flinda

Thank you Flinda and I totally empathise with you and you are so not alone! That is how I live my life if I have a couple of busy days enjoying life I end up in bed for 24 hours. People just do not understand and I almost think I must be depressed sleeping like this. I feel like I isolate and become too scared to socialise because of the way I will feel after which is exhausted! X

Just wondering if you have had your iron levels checked?

Azzure profile image
Azzure in reply to Stilllife

Yes my iron levels are ok I did recently have low potassium levels but I have always felt exhausted when bloods have been fine. Thank you for reply x

I can relate to this but unfortunately don’t have any answers. When I was working I would frequently sleep all day on my day off. I think it’s just your body’s way of saying it needs it so just go with it. You’re working all week then you know you can have a lie in on that day so your body takes the chance to re charge. Having said that it’s definitely worth asking your GP or Rheumy to do a full blood check for low levels of iron folate ferritin Vit D & B12. All can contribute to fatigue. X

Azzure profile image
Azzure in reply to Otto11

Thank you Otto I don’t have the answer either so difficult isn’t it. All my bloods are normal the ones you mentioned above because they have done these. I did have my last bloods as low on potassium which my GP flagged and said was low but my Rheumatologist said wasn’t ! I know my RA not being controlled properly x

Otto11 profile image
Otto11 in reply to Azzure

That will no doubt be contributing. sometimes we just have to listen to our bodies. Hoping things will improve soon for you x

I was incredibly tired and yet could not sleep until 3am then slept until 7pm. Crazy way to live life but was newly retired so thought I was catching up! Spoke toRheummy who said righty oh- off to blood work you go! I had very low iron and vit D levels. Told me to take well woman over 50 tablets. Since then I am much better.

I still get sleepy days where I stay in pj and watch rubbish films but about twice in a month so I can live with that. So speak to your doc or team and ask for that MOT blood test. Good luck 💜🤩

As you work full time, I hope it’s a Saturday that you sleep all day or that you have an extremely understanding employer 😊I was always tired while on MTX and Felt ill all the time sometimes too ill to get out of bed. Then I got so sick I said no more. That was about three years ago. (I did well until a recent flare caused by a shot given to me for knee pain. It didn’t help the knee at all and I was in full body pain.)

I don’t sleep more than 4-6 hours straight and nap late afternoon without knowing I’m falling asleep. I work part time and eat lunch when I get home at 3 in the afternoon. After eating I drift into a deep sleep without warning and wake up 2-3 hours later. I think your MTX catches up with you makes you sleep all day. If you function well otherwise and it’s not interfering with your lifestyle and your doctor isn’t worried, enjoy your lazy day off. But if not, ask your doctor for help fighting this. God bless.

Hi Bonnie thank you for your thoughtful message. Yes it is on weekend I’m asleep all day ha ha not in the week as I work 5 days. I didn’t think of maybe methotrexate catching up with me. I think I will speak to my Dr to see if change of medication will help. X

Actually that is almost EXACTLY ME! I have at least ONE day where I can not get out of bed or at least really struggle staying awake. NOTHING has helped me with that either...all though it seems to get a little better during the summer and when I get on a regular "exercise" routine. IF I ride my bike 4 times a week it doesn't happen as often BUT I do tend to get an excellent, full, non-waking night of sleep when I exercise. If not, I tend to wake up probably more than I even realize thus it catches up with me after a few nights. Maybe that is what is happening to you?

Azzure profile image
Azzure in reply to patrickd

Hi Patrickd thank you for your reply. I can exercise and feel great but If I overdo it or have an evening out (no alcohol) I’m in bed for the day. And yes if I have broken sleep it’s like that catches up with me and keeps me in bed as well. We have to keep strong!

patrickd profile image
patrickd in reply to Azzure

Honestly, there is even a term for that "Activity Hangover"!! NO ALCOHOL involvedrheumatoidarthritis.net/liv...

Hi, no solutions I’m afraid but I do think with RA our bodies just can’t do everything. I worked full time, often 10/12 hr days. I slept most the weekend just to be ready for work again. My consultant just kept saying saying slow down, reduce hours, reduce stress & pressure. I’d have regular steroid injections with flare ups. In the end (after struggling 10yrs, which also led to mental health issues) I gave up my career, and took a less stressful job, lower (much) salary and the meds worked much better, I sleep well, I have time for me. I’ve not had flare ups. I made the right decision for me, but I wish I’d taken advice regards leaving for ill health reasons, and not tried to struggle on. At times I’m still angry I had to give up what I worked hard for, but I am much happier.

Azzure profile image
Azzure in reply to Hollyhock123

Hi Hollyhock thank you so much for your reply. I can relate to so much of what you have said and it has made a lot of sense, thank you xx

i think that you should really push your rheumatologist over the question of going onto a biologic treament. It has made such a difference to both my inflammation AND my fatigue levels. I can hardly beleive that i have been refused this treatment for years becasue it was rationed. But now NICE have made it available to people with so called moderate inflammation and i now qualify.

Azzure profile image
Azzure in reply to oldtimer2

Hi Oldtimer thank you for your reply. I live in Wales and I think I know you from an NRAS Meeting in Caerphilly. Yes I think Wales are more reluctant to give a biologic maybe as when Mr Camilleri retired and a different consultant took over the first thing she said was no Biologics? I was shocked because I never even brought that word up and that was over 2.5 years ago just before the pandemic. I know I never used that word to her because Methotrexate seemed to be working fine as they changed my life. Mr Camilleri wouldn’t even let me have the methotrexate injections he only prescribed tablets at first. NRAS have advised the cost has come down for biologics and I honestly feel 22.5mg methotrexate is not helping me anymore like it was when I first started it. I’m going to speak to consultant secretary asap. I took the maximum dose sulfasazaline and that didn’t touch me did not work at all. Thank you xxx

Azzure, I know exactly what you are going through. I am on 20 mg Methotrexate weekly and 200 mg Hydroxychloroquine daily and for two days after dosing I feel overwhelmingly fatigued as well as nauseous and dizzy. I too want to sleep throughout the day and do so with absolutely no guilt. My rheumatologist says it is a common side effect. Rest is as important as the medications when you have RA. I am at my worst two days after dosing so I take my Methotrexate on Friday knowing that the weekend is usually less demanding. Then I pace myself and rest as often as I need. Do not feel ashamed nor let anyone shame you. Follow your body’s lead. Hope for you to have better days!

Azzure profile image
Azzure in reply to vnett

Thank you Vnett so much for your lovely reply. I am the same as you both medications. I know it’s not my lifestyle I don’t do anything to really justify being in bed until 5pm it is my RA. I am having a better day today as I was in bed for 17 hours asleep yesterday ha ha! No wonder I feel ok today. Wishing you lots of good days too xx

Yes some weeks tired all day, sleep most of the day, and it's a real effort to get up for bathroom needs, making a cuppa.Particularly the day after taken my MTX.

Don't feel ashamed RA and the meds are difficult for the ol' body to deal with.

You're doing well managing to work.

I’m sorry to hear you’re struggling with this Azzure! I had to quit MTX as the fatigue got so bad I was sleeping 3 days out of seven and still felt tired. When I stopped it my energy levels returned to my usual level ie low but not completely life destroying! I have been told by various nurses and doctors that there are no medications that help with fatigue …. But MTX definitely made it worse for me .

Azzure profile image
Azzure in reply to LinaM

Thank you Lina I definitely need to speak to consultant because I don’t know anymore if it is methotrexate xx

Totally normal imo xx I do this too & I only work pt xxx

Azzure profile image
Azzure in reply to karen1702

It’s a bit crap isn’t it xx 💖

Hi 👋 I’m on 20mg of Methotrexate and just had sulphasalazine added in.

I’m absolutely exhausted. I work 4 days a week 9am to 4.30pm. By the time I walked my dog at 6pm last night I could hardly put one foot in front of the other. My son found me sparko on the sofa the other day where I’d been sleeping for over 3 hours. Just exhausted. The pain from RA is bad enough, but the fatigue - urgh!!!

I’m actually lying in bed now, I’ve had to ring work to tell them I’m running late as I’m too exhausted to get up!!! 😔

Xx

Azzure profile image
Azzure in reply to Chockyuk

Aww Chocky I hear you I’m so sorry you have this too!

I also think some people can’t relate because we look normal if that makes sense.

I continually beat myself up saying stop being so lazy what is wrong with you, it’s quite upsetting really.

It’s not great is it because no one will listen to what I am saying !

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