Fatigue!!!: Hello all, I’ve been very lucky that I have... - NRAS


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Tired-fed-up profile image
38 Replies

Hello all, I’ve been very lucky that I have been well for the past couple of months - despite not being on any meds - I didn’t get on with Mtx tablets or injections or sulfasalazine, so have been managing with prednisolone, that I stopped taking a few months ago. I’m now waiting to try biologics.

Then suddenly - the fatigue!! I sleep for 11 or 12 hours if I can and still feel like a dead weight during the day. Is this the start of a flare? Or can you have a flare of fatigue? I’m so confused why this has suddenly happened and don’t know how to cope. I work full time and am a single parent but all I want to do is sleep or sit on the sofa.

38 Replies
medway-lady profile image

It could be that Prednisolone gave you a false sense of wellbeing as its a steroid and reduces inflammation and can boost energy, but at a cost. Depending on how long you've been taking it, it can be advisable to reduce slowly over time(taper) to give the body time to adjust. It might be worth chasing up the wait for biologics but they don't work straight away and it can take a few weeks to really get in the system. We can't give medical advice but I think I'd ask for a steroid injection to help until the biologic kicks in. Best of luck and its such a shame that everything is taking so long now.

Tired-fed-up profile image
Tired-fed-up in reply to medway-lady

Thanks I think you may be right. The steroids have worn off 😞

ElizabethW profile image

For me, fatigue is a major symptom of my RA. Now that you have been off your meds for a while, maybe your disease activity is beginning to rise. I hope you can get started soon on an effective treatment.

Tired-fed-up profile image
Tired-fed-up in reply to ElizabethW

Thank you!

Lolabridge profile image

I think tour RA is reasserting itself now you are off all meds and waiting for a biologic. Do contact your Rheumy team and let them know how much you are struggling and that you need help.

Tired-fed-up profile image
Tired-fed-up in reply to Lolabridge

Thank you I will do.

Neonkittie17 profile image
Neonkittie17 in reply to Lolabridge

Definitely RA re-emerging I’d say and that in itself is so exhausting. My ex doc telling me I had “unprovoked exhaustion” (meaning you get tired doing nothing!) I’ll not forget as it was so true. Once you’re on an RA bed that works well you tend to feel less fatigued.

Tired-fed-up profile image
Tired-fed-up in reply to Neonkittie17

Yeah that sounds right. I’m exhausted just sitting in my chair now!

Neonkittie17 profile image
Neonkittie17 in reply to Tired-fed-up

It will get better ... I assure you. 💗

Mmrr profile image

Fatigue is my nemesis and is much worse when my RD is less well controlled. I do hope your biologics start soon.

Tired-fed-up profile image
Tired-fed-up in reply to Mmrr

Thanks. I have my pre-assessment so just waiting for the supply.

Madmusiclover profile image

I feel your pain. After a brilliant mid April to mid May I’ve been fatigued. I would say my drugs are about 50% effective. For me fatigue and other RA symptoms generally go together but I can get fatigue for no apparent reason. Sleep doesn’t help. Brick in my head and lead in my veins. Steroids don’t work for me either. Reach out to your rheumy team. Good luck. You are not alone

Tired-fed-up profile image
Tired-fed-up in reply to Madmusiclover

Thank you. I will do. I am so tired of the whole process but hopefully the biologics will help 🤞

Madmusiclover profile image
Madmusiclover in reply to Tired-fed-up

Yes hopefully but not straight away.

Fatigue!!!! I’m with you there . I’ve had 3 good days this week now fatigue. As you say I feel like a dead weight. For me my worst symptom usually means disease is active. One elbow and shoulder niggly yesterday should have seen it coming.

Tired-fed-up profile image
Tired-fed-up in reply to

That’s interesting. I’ve had more “niggles” lately and was feeling happy with how well I was coping…until this 😞. I hope you feel better soon xx

in reply to Tired-fed-up

You too from one rip van winkle to another 😁xx

AWhiten profile image
AWhiten in reply to Tired-fed-up

Curious, what's niggles?

in reply to AWhiten

Niggles are joints letting you know they are not happy . Aches stiffness that come and go.

Olmettig profile image

Fatigue is something we all fight with having RA. I am allergic to prednisolone but I know that it will give you energy and reduce inflammation when you are on it. Now that you are off of it your body is probably reacting and fatigue would definitely be one of those reactions. It could have thrown your body into a flare. Once you start your new medication things should slowly get better. Do you take any supplements to reduce inflammation? I try natural things to help me. Hang in there, stay positive and you will start to feel better. Talk with your Rheumatologist as see what they could recommend.

Tired-fed-up profile image

Thank you. What supplements do you take? I was on naproxen for most of 2020 but don’t have anything now as they wanted me to stop so didn’t repeat my prescription 😞

Beachwalk profile image

I’m same as you and not on meds. I had my bloods tested for thyroid and yes my fatigue was due to low thyroid and hey presto within 2 days of being on thyroid meds I have my energy back and I’m like a ever ready battery. Do get yours checked by your gp

Tired-fed-up profile image
Tired-fed-up in reply to Beachwalk

Thanks I had my thyroid tested about 6m ago so I probably am due another test. It wasn’t quite right so they said they’d monitor it.

Sheila_G profile image

It is hard for you as a single parent but I am afraid that fatigue is a constant problem with RA. In fact, for me, it is the worst problem as my pain is mostly well controlled when not flaring. I would give your rheumy nurse a call and see if they can speed up your biologic. Good luck.

HallySim profile image

Honestly, you have RA and the words jumping out to me are 'full time' and 'single mum'. How. Do. You. Do. It.?!

Tired-fed-up profile image
Tired-fed-up in reply to HallySim

Ah I have been asking myself the same question for a while now. Not very well is the answer 😞. I keep thinking, once I have some meds that work, everything will be better…

madme1 profile image

Maybe readjusting the Prednisolone would work but I would speak to your rhuematology team first. I also think that sleeping for 12hrs would make you more fatigued, because it could be affecting your body clock, maybe try to break it down into small naps/rest periods. Fatigue is definitely a major symptom of RA for me as well and I became very quickly aware of why it is referred to as the sleeping sickness.

Tired-fed-up profile image
Tired-fed-up in reply to madme1

Thanks for the tips. I hadn’t heard of the sleeping sickness. That makes sense 😴

snotts profile image

Nothing helpful to add but I am right there with you! I'm on day three of a holiday and day one and two I was active and up and about. I slept 13 hours last night and haven't left our rental today.... In bed at 9 after lying on the sofa all day! It wasn't what I'd planned but I'm just gonna roll with the punches and rest.

Does anyone else get worse joint pain when tired?

Madmusiclover profile image
Madmusiclover in reply to snotts

Yes but I’d put it the other way round. Get most fatigued when joints/tendons not good

Tired-fed-up profile image
Tired-fed-up in reply to snotts

Hope you feel better soon xx I’m very lucky that Ive had 2 short holidays this summer when I’ve been fine. I am now on day 3 of exhaustion - achy and stiff but no increased pain.

I‘m so sorry and I can’t suggest very much but sending empathy and hugs. I‘m off meds waiting for a biologic but delivery could still be a few weeks and have three small children and a job and I find it hard. I have no idea how you do it??? Can you recruit anyone to give you a hand with a few things? Can you have another steroid shot while you wait? I know it’s not ideal but I suppose it’s a balance with making life manageable. Steroids should help with the fatigue - the tablets in particular often make me a big „buzzy“! I really hope you get relief quickly and start to feel better. Sending kind thoughts xx

Tired-fed-up profile image
Tired-fed-up in reply to

Thank you xxx hugs to you too xx how do I do it? Not very well at all 😞. My daughter has missed out on so much, the house and garden are a tip, and I’m at crisis point at work - feel like I should quit. I was on steroids for nearly all of 2020 and they worked great but then I got a foot stress fracture that wouldn’t heal so they are worried the steroids contributed. Still have problems with my foot now 1 year later. Sorry to blurt out my life story! Hope you have a lovely day xx

in reply to Tired-fed-up

Can you cut down on work a little? I find it frustrating enough the house and garden slowly descending into chaos but when it (seems to me that it) affects the kids then I find that very upsetting and hard to tolerate. Are there some gentle things you can enjoy together? Arts and crafts, board games or audio books or movie nights or something? Just so hard when you feel like your eyes might close at any time and you might roll into a stiff ball in the dark and stay there!! I do so much hope you get your biologic soon and that it kicks in quickly!! Let‘s hope for speedy biologics all round.xxx

Chockyuk profile image

I totally sympathise with you, the fatigue is horrible. In fact I’m still in bed now 😂 😖

I am always fatigued, but when it’s ‘extremely’ bad, for me, it’s is always a sign a flare is imminent. How long did you taper off the steroids? As medway-lady says above, maybe ask for a steroid injection, I had one about 4 weeks ago, worked wonders, I even went to a music festival and was dancing around like the clappers.

And to be a single mum, although I’m in my late 50’s and my son is now 21, I have been separated for almost 5 years now, and while my son is now at Uni, I have found it very difficult to cope with work, household maintenance, garden (I actually now have tendonitis in my left shoulder from lugging the blinking lawnmower around) walking the dog etc, to have to do it alone when feeling so awful, you are definitely a warrior.

I’m not sure what you can do with the fatigue, it seems to be part of the disease, also the medication - I’m on 15mg of oral Mthx and I’m always exhausted. I do remember before lockdown I had Hydroxy introduced and for a while all the fatigue went, but ultimately it didn’t agree with my stomach, so I had to stop taking it.

I don’t suppose it’s an option to even temporarily reduce your hours at work a bit?

I do hope once you get the biologics, it’ll all change.

Keep us posted 💕

Tired-fed-up profile image
Tired-fed-up in reply to Chockyuk

Thank you! It helps to know I’m not alone! Work, house, garden, school runs, cooking etc etc - tbh it’s all become too much and I’m not really coping with any of it. Honestly, things just don’t get done 😞

I did try hydroxy for a few months - didn’t see any difference but it’s so hard to know if things are working or not! - then my GP wouldn’t repeat the presc so I gave up! Maybe I should give it another go.

Thanks for your support xx

iongrill profile image

Fatigue is a natural side effect of an autoimmune flare.

I found O coudk largely manage it with a low lectin low histamine diet, and have recently stopped the biological and take no meds either.

For a quick work around 1g l- carnitine in tea, with 200mg of caffeine often helps, but not always.

Tired-fed-up profile image
Tired-fed-up in reply to iongrill

Thanks. Haven’t heard of this before, I’ll have a read.

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