Crushing fatigue : Hi everyone this is my first time... - NRAS

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Crushing fatigue

Jeremycfc profile image
42 Replies

Hi everyone this is my first time post, I'm always interested in all you're opinions and suggestions it's such a helpful site.Had RA since 2004 like most of us up and down good and bad days, at the moment on methotrexate and sulfasalazine, last couple of days had awful fatigue has wiped me out,feeling sorry for myself, i normally try and rest,not really working this time and being self employed bit of a worry, just wondering has anyone any tips, can never get through to the ruhmie nurse's, all the best to you all out there x

42 Replies
Deeb1764 profile image
Deeb1764

my life is fatigue I can’t get past it and so I rest when I can rest and then do bursts of activity ie 10-15mins slots then Rest and then another burst.

I am restarting work soon to see if I can do work which I did in May to July and it was hard going and I just went into a work mode need to achieve these jobs and push past the pain and overwhelming need to rest. It’s not a great solution but needs must.

Make sure you sleep well at night even if it means going to bed early And resting!

Jeremycfc profile image
Jeremycfc in reply to Deeb1764

Thanks for the reply, it's all about rest i know and getting work life balance but it's hard as we all know, KBO

Neonkittie17 profile image
Neonkittie17

Hi and sorry to hear that. Over the past 4-5 years since my immunoglobulins level dropped to hypogamma as a side effect of Rituximab infusions, I have had extreme fatigue whether I do anything or not. “Unprovoked exhaustion” was how my former GP explained. Basically he said “you’re knackered if you do anything or not”! I think if you’re new to RA you can feel totally wiped out but then again certain meds or indeed stress can do that as well. As you’ve had it 18 years you’re hardly new to it!

Also worth a mention that low vitamin D levels can make you feel like you’re dragging yourself around. I have made extra effort this year to go to bed the same time and much earlier and I’m getting a much better sleep routine but I am still tired. All bloods checked very thoroughly and no anemia. Presume you don’t have low Vit D or anaemia? You could mention that it to your rheumy/nurse or the GP could help you as mine did and my D levels were rock bottom. They can return (and did!) to normal in a couple of months with taking the correct level of D. Worth a thought. Hope you feel less tired soon.

Jeremycfc profile image
Jeremycfc in reply to Neonkittie17

Hi and thanks, I've always had bouts of fatigue on and off but not this bad having bloods done soon so they my show something, all the best

Neonkittie17 profile image
Neonkittie17 in reply to Jeremycfc

Hope you soon feel less tired. I could not believe how tired I was due to rock bottom D levels. Really is worth a thought.

Jeremycfc profile image
Jeremycfc in reply to Neonkittie17

Thank you,yes I'll get vit d levels checked, I'm glad i posted your all so helpful and supportive x

MadBunny profile image
MadBunny in reply to Jeremycfc

Might be an obvious question but have you had your vit B12 levels checked? Mine were low, and that was making the fatigue worse. I had an intensive course of injections initially and now have a booster every 12 weeks at the GP s.

Jeremycfc profile image
Jeremycfc in reply to MadBunny

Hi that's interesting thanks, I'll get that checked with vit d levels, all the best

MadBunny profile image
MadBunny in reply to Jeremycfc

Youre welcome

Tourk profile image
Tourk in reply to MadBunny

vitamin D gives a boost as well.

It seams everyone I've talk to is exhorted, poor quilty food, stress and constant worry about whats going on in the world.

MadBunny profile image
MadBunny in reply to Tourk

I've just started the Vit D tablets. Tbh I havent felt 100% for much of the last year, since I've had the covid jabs (had to stop& start the meds for the jabs )flu jabs, had covid earlier in the year, I think my poor immune system has been quite confused at times 🙄 Glad I had the covid jabs though , as it was quite mild when I had it. 😊

Tourk profile image
Tourk in reply to MadBunny

Great name by the way.

I had covid October last year only mild-ish i treated it with cholecalciferol ( the active form of vitamin D). It didnt last long. One day i was ill the next i felt better than i have for years. 40 years of smoking cleared from my chest and have been able to breath better since.

Sadly you are not alone in suffering long term side effects from the covid vaccine.

I could certainly tell the man made aspect of covid when i got it. A rather nasty bio weapon. Why they feel the need to make these things is beyound me.

Viv54 profile image
Viv54 in reply to MadBunny

Hi, not posted on this site before , i am about to start a course of Vit B injections ,plus Vit B tablets . Did it help you ? TIA

MadBunny profile image
MadBunny in reply to Viv54

Yes it did . When I had the first intensive course I remember having a surge of energy and cleaned all the kitchen lol. It's settled down now, but still helps. I had tablets during the covid lockdowns, which weren't as effective ,but was back on the injections as soon as I was able to.

Neonkittie17 profile image
Neonkittie17 in reply to Jeremycfc

You’re most welcome and we all help each other on here from our experiences. x

Viv54 profile image
Viv54 in reply to Neonkittie17

Thanks so much,just about to start a course. Fingers crossed 😊

nomoreheels profile image
nomoreheels

Hiya Jeremycfc, welcome. Well, my thoughts were alongside NK's, anaemia or low Vit D. Or, maybe you're due a med change/dose increase if you've been on your current regime a while, disease activity wipes me out. That walking through treacle feeling is rubbish, no matter how much you rest, when you can afford to being self employed, you don't seem to gain much more energy. It's a difficult one.

Neonkittie17 profile image
Neonkittie17 in reply to nomoreheels

H there, hope you are alright? 💗

nomoreheels profile image
nomoreheels in reply to Neonkittie17

I am thanks J, although I was called in to see my GP yesterday. My CRP is way up for me, but I have a Rheumatology appointment today so may learn more then.

How's things with you? x

Neonkittie17 profile image
Neonkittie17 in reply to nomoreheels

Sorry to hear. 😑 I hope your rheumy appt went well and you are soon back on track. 🙏🏻

Jeremycfc profile image
Jeremycfc

Thanks for your reply,going to see if things settle down they usually do fingers crossed, get the bloods done and go from there, thanks again

madme1 profile image
madme1 in reply to Jeremycfc

Hi Jeremy ive had ra since 2013 and i suffer chronic fatigue. Im due an appt with nurse practitioner on Monday next so going to ask if i can get my vitamin b12 checked. Though i did find that taking yeast tablets years ago made me want to eat more, which didnt help my weight. I do try to go to bed eatly but even that is hard. I find that my vision suffers as well, its like im trying to look through mist. A lot of the tine i do find that when you mention fatigue it tends to be pushed to one side. No real answers for you here if im honest, although just before the pandemic hit i had a referral form for a sleep assessment. My younger brother has recently been diagnosed with sleep aponea, so i may push for that assessment as well.

Miasnana profile image
Miasnana

I had the same overwhelming feeling of fatigue, I felt bone weary doing nothing a blood test showed my hb level was through the floor. I had an iron infusion end of June, while not yet turbo charged things have got much much better and my latest blood test shows things nearly back to normal. I take an iron supplement daily as inflammation can cause low hb.

Peacox profile image
Peacox

I struggle a lot with fatigue. There’s a least one day a week when I just can’t work (the day after my MRX injection) but sometimes it’s two whole days. I’m also self employed so when I do have deadlines, it’s such a struggle. I have no big tips, really. I have empathy & solidarity. I do tend to work in small bursts, these days. I can’t multi task anymore, those days are gone. One task a day is usually all I can manage. It’s a constant fight. I don’t have evenings anymore, either. As I’m floored by about 7pm, so I have to go to bed — it’s difficult as a lot of work that I might potentially get involves being available for evening events. But that’s a real difficulty. I’m sorry I don’t have much to say to help.

Jeremycfc profile image
Jeremycfc in reply to Peacox

Hi and thank you for your reply,your really going through it seems I'm not the only one, getting bloods done tomorrow see if they show anything up,wishing you all the best x

Linysaurous profile image
Linysaurous

hi Jeremy, sorry to hear of your current struggles. I agree with all other comments, the only other things I’ve found helpful is a mostly non-processed and plant based diet. Exercise is a tricky one, sometimes pushing through the fatigue with a brisk walk or gentle yoga does help but other times it doesn’t, follow your gut instinct and you will find what works for you. I’m self employed too, I always let my customers know if work might be delayed, it takes the pressure off but I agree, it’s a financial worry at times. Best wishes, Lin

Jeremycfc profile image
Jeremycfc in reply to Linysaurous

Thanks for your kind reply, i could do without pressure of work as it's physically exhausting, hey-ho Thanks again x

wilbertjellyfish profile image
wilbertjellyfish

maybe try to get a GP appointment. Perhaps you have an infection. Ive had several bouts of cellutlitis and it was only after I was well I realised how unwell I had been.

Im self employed also and do tend to have a deeb1764 approach of head down and push through. Its not ideal. So id not recommend it.

Hope you feel better soon, even the odd good day is great at helping you feel better.

Tourk profile image
Tourk

do a bit rest, do a bit more rest, then the days gone. Sounds all to familiar.

As others have mentioned get your vitamin D and B levels checked.

because our food is not what it used to be, and we are eating less red meat. We have to Subsiguise our diet by taking vitamins. zinc magnesium and Calcium are missing in our diets.

Ive been taking creatine monohydrate for 7 months now with very good results less pain from my ra and got movment back in my lhands. It cant undo the damagd but it has helped more than i expected. Its also got rid of most of my fatigue.

Also ive been exercising everyday I've got a damaged spine so im limited in what i can do. Every little helps. I feel better in myself and have less fatigue

Jeremycfc profile image
Jeremycfc in reply to Tourk

Thank you

Plumcrumble profile image
Plumcrumble

Hi jereremycfc, personally i didnt get fatigue when i first got RA 42yrs ago, only when i was anaemic, i had plenty of pain and stiffnesss. Its only the last year or so im getting fatigue, dont really know why, its such a complex condition, sending all the best to you.

Jeremycfc profile image
Jeremycfc in reply to Plumcrumble

Thank you

Evie3 profile image
Evie3

I think I must be lucky as dont suffer with fatigue but I am sure others on here will be able to comment. Take care

CripLady profile image
CripLady

Amitriptyline 20mg at 7pm made a huge difference to me pain wise and getting good quality sleep. I still have to pace and rest. One day on one day off works for me.

Viv54 profile image
Viv54 in reply to CripLady

Me too !

Painter49 profile image
Painter49

I have FM and that is how I describe the fatigue .. crushing. I try to listen to my body and lay down when I need to.

So sorry you are experiencing this.

Happy5 profile image
Happy5

Awww bless it's hideous init? Long time back I had chronic fatigue post glandular fever had to spread my work days (was a sugaring practitioner) from 2 to 3 days & put 30 minute breaks between. Literally lay down during the breaks. Wanted to cry when I woke up felt like I had lead weights all over me. As others have said rest , good sleep at night too.

No harm calling your RA dept advice line to discuss the issue.

Assume you're having regular blood tests so ask if GP can request/check various levels of Vitamins etc?

All the best

Rupert2001 profile image
Rupert2001

If the severe fatigue does not settle after another few days it would be worth contacting your GP so that they can check you over and do blood tests to exclude other health problems which others have suggested such as anaemia, under active thyroid etc. Fatigue, of course, can be related to RA but you need to make sure it is being caused by something else which perhaps could be treated quite easily. The fact that you are self employed makes it even more important to get it sorted out quickly as you will be worrying about the financial implications which will affect your sleeping and make the fatigue worse.

Hope you get it sorted out soon.xx

Jeremycfc profile image
Jeremycfc in reply to Rupert2001

Thanks for that, getting bloods done tomorrow x

Green230461 profile image
Green230461

I had similar issue and it was old low Vit D and iron. Simple blood test from doc told me this. Now on Vit supplements and feel so much better. With RA apparently low D and iron are very common - so get checked out don’t suffer 🙋🏻‍♀️

mickam profile image
mickam

Hi. Like many people on this forum I suffer from really bad fatigue. It used to be an occasional thing but over the last six months it appears to be permanent. I have no advice that is going to really change your situation particularly if you are still working. The only advice I can offer is, don't fight it, you won't win. do what you can to work with it. Accept that there may be days when you are pretty useless and try to work around it. Also. when you are feeling ok. don't overdo it. our health problems lull us into a false sense of security and if we take the attitude that we are fine and can do anything when we're feeling ok we do end up paying for our over enthusiasm. Good luck.

Sheila_G profile image
Sheila_G

Hi. I am afraid the only thing you can do is rest until you feel a bit more able to do things. I know this isn't much help when you have to work. I also know how debillitating fatigue is. Sorry I can't be of more help but you are not alone, we all know how you are feeling. All the best to you.

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