Fatigue: Hi I’ve just been diagnosed with RA and the... - NRAS

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Fatigue

Mcleod48 profile image
31 Replies

Hi I’ve just been diagnosed with RA and the fatigue is getting me down. I’m über busy normally with my job and very independent. Any ideas on fatigue and not getting depressed. Feel emotional and overwhelmed by the smallest things

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Mcleod48 profile image
Mcleod48
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31 Replies
JFlay profile image
JFlay

Hi, welcome but sorry you've had to join us! Have you started on any treatment yet? The DMARD'S take quite a few weeks to kick in but I found that when they did my fatigue slowly got better. I have learned to pace myself though otherwise I suffer for not doing.

When I was first diagnosed in January this year I felt exactly the same, emotional and overwhelmed by it all, but that is much better now too. It took some time to adjust but life seems do-able!

NRAS have a selection of booklets online there is one on managing fatigue.

Wish you all the best 👍

sylvi profile image
sylvi in reply to JFlay

Good advice.xxx

Mcleod48 profile image
Mcleod48 in reply to JFlay

Thank you xxx

M45984371 profile image
M45984371

Hi I was diagnosed 3 years ago, and fatigue was not an issue. However since May this year the fatigue has really kicked in, so much so that I have been off work for 10 weeks. I used to run and go for long walks, none of which I am now capable of. A few weeks ago I bought an electric bike (pricey!) and it has been a real boon. Due to the assistance it offers I can go for a 20 mile bike ride without breaking a sweat. It has transformed my mood. Best of luck.

Mcleod48 profile image
Mcleod48 in reply to M45984371

That’s a great idea - thank you

RA57 profile image
RA57

Morning I joined the RA club 2 years ago and like JFlay once my meds kicked in the fatigue slowly improved. Each of our journeys are different and we all respond to treatments in different ways. I know that all the team I have behind me OH, physio, consultant, nurses, gp and NRAS have all helped me get to where I want to be. I was off work for 9 months and returned in August and now feel there is light at the end of the tunnel. Try and stay positive and embrace all that is offered to you. Good luck 😉

Mcleod48 profile image
Mcleod48 in reply to RA57

Fingers crossed xxx

Scottishlad profile image
Scottishlad

I'm sorry to hear that fatigue is part of your Rheumatoid Disease.

In the past I have had a spell of chronic fatigue and been affected by fatigue as part of my RD. My experience is that it makes your body like a battery with a slow charger. If run the battery flat the charger struggles to fully recharge it. This can become a vicious circle.

To cope with this you need to learn to work and live smart. Remember the 80/20 rule. It is said you can achieve 80% of your targets in 20% of your time. Prioritise to make the best use of your energy.

Make sure that you leave some of your energy for yourself. You need to work to live not live to work.

I hope that your RD is brought under control soon and your fatigue improves.

Mcleod48 profile image
Mcleod48 in reply to Scottishlad

Very wise words -80:20 will be my goal next week xx

Mmrr profile image
Mmrr

Good morning Mcleod48, fatigue has been my biggest issue, more so than my joints.. It can be so limiting, but as others have said it is all about managing yourself.

I use spoon theory to help me on a day to day basis, if you Google ' spoon theory' you will find lots of information.

I also wear a fitbit 24/7 which is set 1. To keep me moving , by giving me a reminder to move every hour when I'm really not that well 2. To prepare for bed 3. To let me know when I have used my steps for the day.

I find it very useful.

Your fatigue might also improve as the meds kick in fully.

Mcleod48 profile image
Mcleod48 in reply to Mmrr

On it - really helpful thank you xxx

Hi Mcleod48. Sorry you’ve had to join us this site is invaluable.

Fatigue!!!!!! This word doesn’t begin to explain how you are feeling. Unless you suffer from it no matter how understanding someone is you can’t grasp it. Fatigue is my most consuming symptom. I have periods of time that pass me by and I barely function or communicate (it’s very isolating) for me there’s nothing I can do until it passes. Sometimes I have flash flares when I I’m consumed with fatigue and stiffness very suddenly then 2/3 hours later gone. Other times I’m totally disabled for months.(so unpredictable) it means the disease is active. I use too battle through but found for me it made things so much worse. My body can’t cope and is in stress I have ended up in A&E with severe allergic reactions and now take antihistamines during a flare and I carry an epipen. I down tools and have found that it will pass much quicker. As your new to this disease it will take a while to work things out for yourself and even then this disease will throw a curveball. Medication can work but it is trial and error and will take time. There are so many success stories on here it just takes time. Any questions please ask someone on here will probably have an answer. Hold on in there your not on your own.

My family are great they know when I’m not great. I try not to get down as I don’t want to drag my family down with me unfortunately they are also victims of this disease .

Mcleod48 profile image
Mcleod48 in reply to

Thank you, good advice about family as well xx

Whezziewhoozie profile image
Whezziewhoozie

Hi,

I was diagnosed about a year ago, work full time and it’s hard. When the DMARD’s kick in you will feel better.

Also worth checking your B12 and iron etc, got my GP to check on one of my regular blood tests . Mine were low and correcting them has helped.

Pace yourself it’s hard but it will be ok.

Mcleod48 profile image
Mcleod48 in reply to Whezziewhoozie

Thanks xxx

M45984371 profile image
M45984371 in reply to Mcleod48

My B12 and Vitamin D went down too in the last few months. Now corrected, but fatigue still there.

AgedCrone profile image
AgedCrone

When you are first diagnosed everybody has their own particular issues....fatigue being a major problem for many, if not all , with RA.

The only way I coped was to stop fighting against the diagnosis & listen to my rheumatologist......not easy when you have been leading a pain free happy life taking good health for granted.

But once you are settled on the drugs that suit you things level out...but sadly it often takes some time to find the right drugs....but there are many to choose from these days, so don’t despair if the first choice doesn’t immediately sort your fatigue.

Most of us were fit & busy when we were diagnosed & thankfully with patience & treatment we realise life can still go on to lead a good live.....maybe at a different pace, but it’s not all doom & gloom .........acceptance takes time.......but you will get there.....so talk to & make good use of your rheumy nurses......they really are a great help & are very knowledgable.

I hope you get settled on your drug regime very soon....in the meantime, remember stress is a major issue with RA....so work at trying to remain calm.

Mcleod48 profile image
Mcleod48 in reply to AgedCrone

Ha that’s the tough one as I’m a stress bunny at best of times 🙏

AgedCrone profile image
AgedCrone in reply to Mcleod48

Read back over some stress related posts & tips on here......& see how stressing down really helps calm symptoms.

RA is life changing...but quite often for the better.....If you think seriously about what you are stressing over ....then think of controlling your RA it’s a no-brainer isn’t it?

You have willpower .....use it for your own good....not over events you can’t control.

stbernhard profile image
stbernhard

Unfortunately fatigue is very often closely linked with RA in the first stages. The best advice I can give is to read about it on NRAS. Have a word with their help line.New research points to a connection of inflammation and the inability of the brain to get to an "alert" stage.

I got through it by recognising that fatigue is a fact I have to accept. Be kind to myself, have a short break every so often, know that it will get better, still do a bit of exercise and try to stay positive. I was lucky that it lasted only a few months.

Stay in touch, people are here for you.

Mcleod48 profile image
Mcleod48 in reply to stbernhard

Thank you xxx

charisma profile image
charisma

Hi McLeod

So sorry you have had to join us but hope you feel welcomed and find everybody’s experience useful. After four years, I might have accepted diagnosis etc but still find life very up and down with the unpredictability of particularly aggressive RA. I hope your DMARD meds will kick in within three months and it will be possible to live a much more normal life.

We all have times when we have to grieve the losses involved, and each cope in our own way with finding the positives too.

Wishing you all the best with finding the best way forward for yourself.

Mcleod48 profile image
Mcleod48 in reply to charisma

Lovely words xx

Monkeysmum profile image
Monkeysmum

Hi Mcleod48. I can see that there has already been lots of good advice given re fatigue, so I just wanted to focus on your comment about feeling emotional and overwhelmed.

I was diagnosed about 18 months ago, and remember feeling the way you describe about a year ago, after the initial shock of diagnosis had worn off, so I think this is quite normal. I still find myself feeling that way when I have a flare. Try to remind yourself that it will pass and be kind to yourself in the meantime. I have found that it helps to find alternative ways to do the things that still make you feel like you. For M45984371 above clearly this was finding a way to still be active outdoors. For me, I think it is making sure I am still able to socialise with my friends - these days it is more about theatre trips and meals out rather than shopping expeditions and trips to the gym!

When we have RA, I think it is perfectly normal for us all to feel depressed sometimes, particularly when we are in pain, sleep disrupted etc. I am trying to learn to acknowledge and accept it, but then keep moving forward a little bit every day.

Oh fatigue it's my number one issue at the moment and after I take MTX Tues night I am on the floor for 2-3 days and trying to work with it, horrendous. Learning as I go drinking water as much as I can and carbs as nausea with it.

Mcleod48 profile image
Mcleod48 in reply to

Do mean eat carbs? Sorry xx

in reply to Mcleod48

sorry yes fatigue brain forgot to check what I had written but I eat carbs a bit more I have noticed and it also helps with the nausea.

KittyJ profile image
KittyJ in reply to Mcleod48

I think Deeb is talking about methotrexate re the carbs not fatigue Mcleod48 😊

JDQuinn75 profile image
JDQuinn75

Fatigue can be a bare with arthritis. When it hits me it hit me hard. I don’t have RA but with my OA there are days that my whole entire body feels exhausted. Luckily I haven’t had it hit me in awhile. But as far as any ideas for ya I can’t come up with the first one for ya. Other to tell you good luck on finding something that will help you with your fatigue.

Oshgosh profile image
Oshgosh

I did CBT when I was first diagnosed withNSIP( lungs)

Swiftly followed by day of RA and lupus.

Starte myclophenatethisweek.

The CBT helped me sort my head out,doesn’t do an for physical health,but has helped me cope with all the stuff I’ve had this year

rosie1928 profile image
rosie1928

Hello McLeod.

I have a little tip to manage fatigue as well. A nursec gave me this advice 26 yrs ago.

During the day , take a short break and lay prone on the bed. This means lay with one pillow only so your body up is fully rested. Half an hour might be enough for you. Put on some nice music. This will fire up your batteries again.

ALSO watch a comedy and allow yrself to laugh.....Your body will release endorphins which are feel good chemicals .

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