Fatigue with R&A

[RootsToots]

I'm in a pretty bad way to be honest as have been waiting for nearly 9 months to start tocilizumab. NHS policies or cutbacks are to blame not the nurses. Anyway today finally I'm due my first injection. Reading other posts it's likely to take 2 or 3 months to work. The biggest problem I have apart from deformed hands and feet (as they have literally just left me waiting except for a brief period on steroids) is fatigue. Can anyone offer any advice on how to not feel so tired all the time ?

[HeadInASpin]

Hi, sorry you’re feeling so rubbish! Nras have a booklet specifically about fatigue, which I found helpful - you can either download or order a hard copy.

nras.org.uk/product/fatigue...

Someone also gave me some advice on this forum about understanding fatigue using Spoon Theory. This helped me to understand that I only have so much energy to use each day at the moment and I am much better at planning how I use it. For example if I have an early appointment 9.00am I will shower and wash my hair the night before as it would take too much energy to do so and drive to an appointment so early. At first I got frustrated and tried to fight my fatigue but now I work with it and around it so that I don’t get so upset by it. Hopefully when we get our meds sorted we will have much more energy!

[Tiverland in reply to HeadInASpin]

Agree with you entirely

[Mmrr]

Unfortunately fatigue is one of the commonest and lasting effects of having RA for many people. Trying to get a reasonable nights sleep and build in rest periods throughout the day might mitigate some of the effects of fatigue , but it is about managing it rather than it going away. Spoon theory, easily found on the web by Googling, is useful to help you manage your day.

[MarmiteLover1 in reply to Mmrr]

I agree. It seems to be something sent to try us: I myself find that I have energy for, say, a three hour lunch with a pal which I had today - and then my energy dissolves and brain fog ensues. And bad drowsiness late evening which never happened before RA. So far I haven't had daytime naps as I don't want to confuse my body clock.

[aliplayspiano]

I’ve been on tocilizumab for 6 years now. I had been on no meds for about 4 months before I started it and in a massive flare. It did take about 2 months before I started to see effects but it has made a big difference to me. It has also helped with the fatigue.

[SheilaT3271]

I’ve been on Tocilizumab now for about 5-6 months and it’s certainly helped me and kicked in earlier than previous biologic after around 6 weeks. I was very lucky that my RA team were very responsive to my request to go on it and negotiated the funding with my local health authority. Fatigue is still an issue on certain days but it has improved and I just need to plan in the odd ‘down day’ where I do a lot less. Best of luck.

[Vixen2]

Hi Roots. I’m sorry. But fatigue comes with RA. It’s a ‘package deal’. You just have to listen to your body. Just slow down a bit. Don’t feel guilty if you have to have a couple of naps during the day. Look after yourself. For me. There’s nothing like getting into bed with a nice hot cuppa, a bowl of soup & putting something funny on my tablet. I always have the energy to laugh! They usually say a cat nap’s about 20 mins. Anything more, means you might drift into a deeper sleep. I also love to play sounds of the sea on my phone. Or a massive thunderstorm. Those sorts of noises, really relax me. Good luck. X

[Chockyuk]

I’m sorry to hear you’ve had to wait such a long time for your new meds. 😔

As I always understood it, the fatigue is generally caused by inflammation. But it’s been an ongoing thing for me ever since I was diagnosed with RA, and I assumed like us all I’d just have to put up with it.

My Consultant says my disease is in remission, and touch wood, being on both Methotrexate and Sulphasalazine has been really great, but the fatigue is still awful.

Last year my Consultant checked my thyroid, vit D, B12 and ferritin to investigate why I felt so awful and my thyroid was underactive (I’m now on Thyroxine) and my ferritin was 12, which is really low. The NHS won’t do an iron infusion unless you’re under 10 and having IBS, iron tablets don’t agree with me.

Anyway, it’s worth getting the above tests done, if you haven’t already? Just to see.

I hope you get it sorted, people don’t get it, when you look ok on the outside. I had to reduce my hours at work due to the fatigue, but I get the old ‘oh well you look fine’. It really has ruined everything for me, on weekends I’m generally too wiped out to do much.

😔