Fatigue : Anyone have advice about managing fatigue? I... - NRAS

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Fatigue

Anyone have advice about managing fatigue?

I'm Currently on the sick & have been for months. The Rituximab infusion that I had in August has not worked for me. I'm currently on steroids & painkillers till they decide what's next. I'm so tired all the time & getting through the day is a struggle.

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I'm sorry to hear the Rituximab didn't work for you Rachel. Fatigue is very hard to cope with but I read this a while ago when I was struggling a little & revisited it again recently due to not only coping with my disease being a bit grumpy but also stressing over an op my h needed & it did help somewhat. It's an NRAS publication & might throw a bit of insight into how to cope with fatigue. I hope it helps you too. nras.org.uk/data/files/Publ...

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Hello Rachel43, The leaflet nomoreheels pointed out to you says it all really. I found the most frustrating thing about fatigue, apart from the fact that people who have never experienced it just don't understand what it does to you, that its so hard to pace yourself and be patient with yourself. Once I accepted that fatigue is part of the course, I learnt to give myself a pat on the shoulder for every positive thought and action. Ever small victory. Nobody else will. I hope you will find your own way! By for now with a big metaphorical hug!

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Yes that leaflet is spot on. You also have to be hugely patient, otherwise you just end up in a cycle of doing too much one day and then having to lie down for the next 3. Once you get the disease under control it will help. Until then, eat well, try to sleep well and very gentle exercise/activity.

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Hi Rachel. I am going through it too at the moment. All my muscles feel sooo heavy wish i knew what it is making me feel like this. I worry my husband is going to start & get fed up with me. It seems one thing after another at the moe. I have an appointment with rhymy clinic 19th March spose i shall have to try & talk to them. Hope you start to feel better soon. Xx Alison

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If the above link doesn't help you Alison maybe this one & the additional links on the page will. nras.org.uk/emotions-relati... It can be difficult particularly if it's your partner who doesn't understand how RD affects you or you're not finding it easy to relay being that you don't fully understand why you feel as you do yourself. That's probably the best place to start, understanding just why you're feeling so "heavy" then you can convey just how it is.

I'm very fortunate in that my h has always attended my Rheumy appointments right from diagnosis so we can talk through any issues whilst there, or have done in the past. That's certainly been helpful as my Consultant has explained to both of us why it's been as it has early days particularly when we were both still learning about the disease. Maybe yours would be open to doing similarly if time permits?

We both sing from the same hymn sheet nowadays, we've found our routine & a good level of understanding generally, if you understand. That said we can nadge at one another at times but always get round to talking it over & it's usually because we're both tired & even without our health issues we'd likely be no different. We have our 30th wedding anniversary in April so we must be doing something right lol!

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Thats lovely. I am getting a bit fed up he doesnt understand. I shall look at the link thank you xx Alison

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I still like the spoon theory, you can google, but basically do a bit rest etc or choose to do it all initially then rest. It's hard and I'm dreadful at pacing . But you do have to listen to your body , it's saying in churning away here, rest and let me recover , and when u do I find the fatigue goes improve.. A bit!

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I wondered whether to mention this Allanah but once I'd refreshed my memory by reading through it again what occurred to me was how would I have done this during my last really bad fatigue period, before my sleeping pattern was brought under control with the help of meds. I wouldn't be "armed" with enough spoons to start the day off after a rubbish night, I wouldn't have energy enough to qualify having lots of spoons in a morning to see me through the day. I think it's a great adage to explain RD & the need to pace but not so much when going through the "just let me sleep" times do you know what I mean? x

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I do cos as most of you know I get awful insomnia!! So during the night is classed as much the same, rest , move , rest move etc, I don't count spoons as same as you it's impossible but I use the general idea and it's great for explaining to prople why you are " tired" cos you just can't explain the exhaustion.

The good thing I can say tho is I was defo less tired when my drugs took hold . So I hope your inflammation gets more controlled so that you can get done real rest xxx sending hugs x

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I know, it's impossible unless someone has experienced it & people can tend to think that it's just tiredness but it takes you to a whole other place doesn't it?! It's an oldie but flu-like covers it somewhat, when your legs, arms, head are so heavy it's like there's some kind of force you just can't push against then the tears start from frustration! It's only if someones had "proper" flu only then can they come near to understanding how it is to feel such fatigue, it's not the same even then. Spoons is still a very good way of someone experiencing what it's like for a day if they've never been where we go sometimes though!

I think my feet have reacted quickly to the increase in MTX, less inflammation anyhow but they're still firey furnace burning. First of the fortnightly bloods then Podietry assessment on Monday yay! Hugs back. x

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Hello

Basically fatigue is a real part of the territory, I have suffered now for a long time as it is part of an overactive immune system

Even when taking taking DMARD and Biologic medications they reduce the overactive immune system as well so really it is a double wammie. As the condition, RA is caused by an overactive immun system

When you consider we sometimes take steriods they can also suffer the same problem and Opiate medication have contraindications that cause the same problem.

All I can suggest is you manage your medications LEAN and you just take sufficient to control your pain.

Try a TENS Machine and take instruction on nerve blocks. You need to understand your condition and understand the contraindications that the drugs cause

Personally I have taken medications now since 1985 i am unable to take DMARDS and have not been offered Biologic medications. My pain control is very lean and I generally I just take enough medications to suppress some of the pain and that is the rub.. you need to know what you can put up with.

Remember we are all different needs and strengths I take medications for nuro damage all the time and I also take antidepressants for Reactive Depression

Your situation is yours and no-one can advise how you will control you condition

All I can suggest is talk to the Pain Clinic and learn your Mindfulness or relaxation that will help more than can be realized

Good Luck

BOB .

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Thanks for all the replies. Feeling a bit better today after a fantastic 12 hour sleep. I went back to my GP on Friday as I just couldn't cope anymore. I have been given something for the pain & to help me with my mood & sleep.

It's exhausting being ill all the time. Work are putting me under pressure to return & really getting through a day is proving difficult. I've lost control of the effect this disease is having on me physically & emotionally. Roll on April till my next hospital appointment I need to get this sorted x

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That sounds more positive Rachel! That's the power of restful sleep, even if it was accomplished by meds! Since last August I've worked up from 10mg amitriptyline to 50mg to relax my neck muscles as they were causing cervicogenic headaches. The bonus is it also has a relaxing effect on the rest of me. I regularly nod off in the recliner of an evening which means I need to find my way to bed in the early hours but at least I don't wake enough to then stay awake once in bed! Getting proper sleep has made a huge difference to how I cope during the day.

Hopefully at your next appointment your Rheumy will perform a full review. Just having steroids & pain relief will likely be doing little except keep your inflammation & some pain at bay so you must really be wishing the next biologic is the one for you. Are work aware of what is going on & the process of attempting to get your RD under control?

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