Fatigue support?

[Julied24]

Hi 👋🏻 I just wanted to ask about people’s experiences of fatigue with RA and if you’ve been able to access any specific support from your Rheum teams for it?

I was diagnosed with seronegative RA back in 2017 and although initially the pain and swelling in the majority of my joints was the main problem (on 3 DMARDs then started on Biologic Sarilumab in 2019), over the years it’s the fatigue that has become the biggest challenge.

I received excellent advice from the physiotherapist I saw after being diagnosed on pacing and assessing my energy levels, which has helped but the fatigue has become so debilitating now that on a good week I only get maybe 2-3 better days. I sleep 😴 about 8-9 hours a night and always need to rest/sleep most afternoons but sometimes have to just head back to bed in the morning as well. I have regular wipe out days and have just had one of my total wipe out weeks, where Ive just had to rest and sleep on and off throughout the day for 5 days!

I was just wondering if any one else experiences such severe fatigue and if so whether you’ve been able to access any support from your Rheum teams?

[Madmusiclover]

Yes. You are not alone. Pop fatigue into the search engine to find other posts. Rheumy’s view is that if disease controlled then fatigue is better. Not so. I’ve decided it has a mind of its own. Pop to the NRAS website for their great booklet (e or hard copy) Fatigue Matters.

[Julied24 in reply to Madmusiclover]

Thank you for your support. It’s such a relief to know I’m not the only one!

I understand that research has shown that you can still suffer with fatigue even in remission, so it’s tough that this information is not getting passed to RA teams. I have mentioned the fatigue in my appointments but just told to pace myself, which I have to do all the time! 🤷🏼‍♀️

I’ll get in touch with NRAS to order their booklet, thank you ☺️

[vonniesims]

My understanding is that fatigue means inflammationI have found that I experience it when my medication needs changing

[Julied24 in reply to vonniesims]

Thank you ☺️ My DAS score is at the upper level of moderate at the moment so the Rheum Nurse at my last appointment was very reluctant to change my meds as it’s not severe. But I do wonder if my current biologic isn’t keeping the disease as under control as it should / could be? However she did suggest a possible course of steroids, but I’ve previously had a bad reaction to them so I’m a but reluctant to go on them. Maybe 🤔 I need to contact my Rheum Tram to update them on how bad the fatigue is? 👍

[Mmrr]

Fatigue has always been a big issue for me. Generally when my RA isbetter controlled, I'm less fatigued, but it never leaves me. I also sleep 8 - 10 hrs per night, but I'm in bed for 10 - 12 hrs. I also need a quiet spell each day. Some days I just can't do much. I tend just to go with flow.

[Julied24 in reply to Mmrr]

I’m sorry to hear your fatigue is so bad, but that’s good it’s better when your RA is more controlled 👍

It’s so debilitating and tough to cope with, so it does help to know that I’m not alone. Thank you ☺️

[Julied24]

Thank you so much for all this brilliant information and ideas to look into 👍 I have wondered if there’s another underlying condition like CFS / ME and also sleep apnoea as apparently I snore a lot and have episodes of it suddenly stopping 🤔 Thank you ☺️

[AgedCrone]

I honestly think fatigue is very, very subjective…..what to one person is Chronic Fatigue…is just an Off Day to somebody else.

I think we all manage it in our own way …..learning as we go how to deal with it. After20+ years I think I’m a slow learner..so wouldn’t dare offer any advice.

[Julied24]

Thank you ☺️

[Julied24]

Thank you for your reply and yes I think that’s true re: learning to manage it and I definitely have more to learn about that 👍

[Hidden]

Taking Amitriptyline 20mg at 7pm has helped me. I sleep more deeply now which helps with energy levels. Cutting out stress also helped, cutting out gluten, and taking a daily mult-vitamin & B12. I still get tired, but one day on one day off and/or pottering works best for me x

I was additionally diagnosed with Fibromyalgia because my fatigue was so ridiculous

[Julied24 in reply to Hidden]

Thank you, that’s really interesting. I definitely don’t feel I sleep well at night so that might be good to ask the Rheum Team about the amitriptyline. And I will also look at my diet and stress levels too 👍