So Tired

[emma36]

Evening all, lying in bed after another really tough day at work. Feeling so tired its crazy! The fatigue has really kicked in lately and am really struggling. Work is so busy at the moment and there are times when I just want to park my car, curl up in the back and sleep all day!! Has anyone found anything to help with fatigue? I know I need to get back swimming but its a vicious circle. I am tired so can't be bothered but less exercise I am sure makes me worse!

[Rosie_rabbit]

Hi Emma oh I so know that feeling. I often say that if I stopped too long at traffic lights I'd be fast asleep it's horrible isn't it.

One thing that I've realised recently is that one of my meds has been making me feel ill but I thought it was the RA. I started mtx mid August and had a steroid injection to tide me over. I was taking Celebrex before all of this. The steroid helped everything but the fatigue so I continued taking it.

The effects of the steroid wore off a few weeks ago so I had another injection as the mtx isn't working yet. All the time I've been taking Celebrex. The steroid quickly did its work with the pain but last weekend I just felt dreadful, so tired I just felt ill.

Knowing that I was facing the week from hell with work etc I stopped the Celebrex and took naproxen instead. Naproxen is by far the most effective nsaid but I don't tolerate it well. So I thought I'd see if it would at least get me thru the week. 2 days in, although feeling way better, I had to stop taking it and for some reason I decided not to switch back to Celebrex and took nothing else (other than the mtx and folic acid). I expected to swiftly nosedive but to my absolute delight quite the opposite I feel immeasurably better for not taking the Celebrex it's like the fog has lifted.

Don't know if you're taking any additional meds that may be contributing? Are you flaring or about too? Such extreme fatigue may mean things aren't as they should be. We all just get used to feeling tired and unwell a lot of the time and its easy to blame it all on the RA and accept it unquestionably.

I really hope you feel better soon, fatigue is the worst part of this horrible disease for me and it's the worst feeling. Thinking of you Rx

[Sylviax]

Hi Emma - The fatigue is awful - so you have my sympathy. Interesting what Rosie said - it's worth trying. I've always found that the solution is to follow what my body is telling me and rest - give your meds time to do their work while you sleep. I totally understand that it's almost impossible to find time to go back to bed for 2 hours - but what choice is there? What with work and a young family you're at the centre of everything 24/7 - but unfortunately with RA the fatigue is telling you that you're running out of spoons and need to prioritise what is most important, and it sounds as if your wellbeing needs more attention.

Can you get some help from family, friends or even pay for a child minder? Anything to give you some time to do absolutely nothing!! Does that sound selfish? Well maybe it could be seen that way, but with RA you know that you give your all and more besides just to live a normal life - so on the days when the fatigue is so debilitating you simply need a break for 2 hours - put your jim jams on (or whatever you wear in the land of nod), set an alarm and go back to bed - for some vital Sleep Therapy! You know you're worth it!

Best wishes - Sylvia

(currently in remission via MTX, sulphasalazine, hydroxychloroquin, etc - working 4 days pw, 4 teenage kids and studying psychology degree - life is normal with adaptations)

[emma36]

Thanks guys, think the fatigue is probably due to current flare up rather than meds. Am a month into methotrexate so hopefully I will start to feel some positive effects soon.

I am probably my own worst enemy as I find it very difficult to give in and rest. Feels like if I go that, I am giving in to ra! Bit stupid really, should listen to my body and put my feet up. Its not really in my nature to do that, but think I am going to have to try.

Been a particularly bad week. My husband has been away for a week so I have been juggling the kids and work on my own. Work, although pretending to be understanding are actually not. Have spoken to management about my excessive workload ( sometimes dont even have time to eat) but they dont seem to care. I spend my life looking after others, but no one is looking after me. Feel very tempted to get signed off work so I can just have time to get some energy back, but even manage to feel guilty about that!!!

Will sit down and fund a way to get a bit more rest and hopefully things will soon improve.

[Hidden in reply to emma36]

Hi Emma, I can totally empathise with how you're feeling right now, without sounding patronising you have a young family too which is hard work in itself. I was feeling just like you a few months ago , struggling with my diagnosis, trying to tolerate MTX and a demanding job with management making the right noises but not actually doing much! One day I just thought s@d it and got signed off sick, it was good to have those few weeks as I got my head around having RA (as much as I could!) and get my breath back!! Having said that work were not great on my return again they made the right noises etc, we are covered by the Employment Act 2010, but I watch my back now, record everything and have found out who my friends are Good luck Emma I hope you feel better soon xx

[Elphabafromcornwall in reply to Hidden]

Amanda, you are right to watch your back at work. We have rights and my employer was oh, so helpful and sympathetic - I never had any time off and they gave me part time flexi hours - a dream situation - and then they made my role redundant! so, I got redundancy at the part time rate and I cried so much as I did not want to leave - it was dreadful - they did everything by the book and none of it reflected my illness although I knew that was the underlying cause!

[Ethan]

Hi Emma, I've had RA for 12 years now and by and large the fatigue has been the worst long term effect for me. I have found that you have to listen to what you're body tells you wherever possible. I describe the condition to a lap top computer, on matter how long you charge it (sleep) you only have so much battery life (energy). Each day is different and I find the bad days are when I wake up and feel great and then do too much! Don't think there is an easy fix, sorry.

[Gem33]

Hi emma, I'm so sorry you're feeling so tired. I can empathise. 4 days into sulphasalazine and hydroxychloroquine and 4 weeks after my steroid injection I'm so tired but hopeful that the meds will help soon. Steroid injection has with off and off for another next week. I'm not sure how to rest with little ones although I am fortunate that my Mom helps me. Also trying to move and had my little one in hospital a few weeks back. All the plans to pace myself went straight out the window. If the next injection doesn't last then it's IV steroids for me. Try and take your opportunties to rest when you can and accept as much help as is offered to you. It won't be long until the meds get yiu fighting fit again. Hang in there. I really hope the mtx kicks in soon. Lots of love x x x

[emma36 in reply to Gem33]

Here's hoping things get better for you too x. Was wondering how you were getting on since your last post that I read. Glad you are still hanging on in there x

[Elphabafromcornwall]

Hello everyone! Oh my days, the fatigue is relentless! I take methotraxate and folic acid - I also take amitryptylene as a muscle relaxant at night - and that has helped so much with the broken and un-refreshing sleep I used to suffer from. Now I sleep so much - my children are grown and I work just two days a week and still the constant pain and fatigue is so bad. I can sleep from 9pm at night to 12 noon the next day - that just aint normal!! I wake with pain and go to bed with pain. I went swimming and that wrecked me for about a week after which is so upsetting as I used to be a great swimmer and really enjoyed it. I too have naproxene and cannot tolerate it so have switched to celebrex (which sounds more like a breakfast cereal than a medicine). I only take it when my pain in intolerable as I have had IBS for many years and found that the meds make that so much worse. I used to have a great full time job which I loved and now I work part time in a much less fore filling role

But, I am very lucky as my family help me so much and my husband has a good job and is almost my carer as well. I need help getting in and out of the bath and many days I am unable to prepare a meal or go to the shops in my own car without help. Sometimes I feel so unwell in the mornings that I cannot even drive myself to work - that cant be right can it? So anyone who has any hints and tips to beat the fatigue I am most keen to hear.

[emma36 in reply to Elphabafromcornwall]

Gosh, things sound really tough for you, suddenly feel bad about moaning about being tired! Glad to hear that you have plenty of support though.

Think I am going to have to sit down with my husband and work out some way to get some rest.

Noticed the Cornwall bit in your name. You still in Cornwall?

[emma36]

Ok all, have taken note and am resting! Its 8.20 and I am tucked up in bed watching the x factor. How's that for a rock and roll lifestyle!!!!!!