Rheumatoid Arthritis -: Hi Everyone I am new I have... - NRAS

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Rheumatoid Arthritis -

maggie230803 profile image
7 Replies

Hi Everyone

I am new

I have been reading everyone life stories, sad and happy.

I have monthly infusions of tocilizumab (Actemra)

I was diagnosed in 2010 got up one morning and my fingers were locked and I went down hill from then.

July 2017 I had my left hip totally replaced and will be having my right hip done in January.

My symptoms are a mixture of a bad hip, lower back pain and RA.

My question is how do I relief the chronic fatigue ??

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maggie230803 profile image
maggie230803
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7 Replies
sarah1967 profile image
sarah1967

Hi their,

Unfortunately my experience of the diseases is fatigue is a part of it sadly. I have had the diease for 15 yrs now. Learn to live with it and excepting it is the hardest part. Well it was for me.

The only way i relieve it is to pace myself. For example rest as much as i can , listen to my body when it's telling me its had enough. As before I'd push myself to finish what i was doing.

Have early nights if I've planned trips/outings out.

I to am on 4 weekly infusions, my body tells me on the day i have it am bursting with energy after. So at first i tend to come home do all my jobs then I'd sleep. Then I'd be restless for a few days then I'd have 2 great weeks and the week before the infusion would be hell.

So now after the infusion i come home sleep for a few hours. Pace myself. Spread my outings out during the 2 good weeks i have and pre pare for the worst week by not doing much but only doing whats necessary.

Plus i dropped 1 day a week from work. Which made my life so much better. So i no longer work on weds . It gives me time to re charge my battery. But i could only do this as i now recieve pip. As am a single parent.

I guess what am trying to say is listen to your body find out what works for YOU. As everyone is different. Do what works for you.

Good luck.

Sarah

Xx

sylvi profile image
sylvi

When you find out let me know as i am so exhausted you couldn't imagine being as tired as i am from doing nothing.xxxxx

Gnarli profile image
Gnarli

Hi Maggie and welcome to the forum I think of as my lifesaver. Peopled with lovely compassionate and informed folk we share experience, support each other and have a giggle as often as possible. The fatigue is nasty isn't it? It's frustrating but the only thing you can do, as I understand it, is to pace yourself and rest. Have you heard of 'the Spoon Theory' by Christine Miserandino? Well worth checking it out as she explains it so very well even though she was using it to explain the fatigue associated with Lupus. Hugs

J

Kai-- profile image
Kai-- in reply to Gnarli

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👍👍

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🥄 Theory: healthunlocked.com/nras/pos...

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🎄 🔖 🎁 🎅 ❄️ ☃️ 🌨 2️⃣0️⃣1️⃣8️⃣ 🎉 🥂 🍾 😘 💋

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Carolsos profile image
Carolsos in reply to Gnarli

The tiredness never goes, I work very early mornings and even on days off have to go to bed at 8/9 pm. I work about 35 hrs a week but am so tired. I sometimes have to go home and straight to bed. Have just had a flare for a month with lots of pain and fatigued. Having to drag myself to work, got Xmas day off and boxing day. But before that had to work 7straight shifts and now am working 6straight shifts. It does me in so tired. Cannot complain as it's over Christmas and am a breakfast chef..

Take care.

Carol X

Gnarli profile image
Gnarli in reply to Carolsos

I so need that dislike button. I'm afraid the fatigue is just one of the merry little tricks RD can play on us until we find the meds that can control it and suit us. Big hugs

J

maggie230803 profile image
maggie230803 in reply to Gnarli

Thank you, I looked it up and had a good read.

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