Why sooooo tired?

[Opal76]

Evening all (I say evening, its 4.30 and I've left work, done the school run and am at home in my PJ's) I read a lot of your posts and can only sympathise with some of the awful stages of RA on here, I suppose Im at the beginning of a journey but my main issue at the moment is the extreme fatigue, I feel breathless, drained, my arms and legs feel like they've heavy weights on them ... Im struggling to hold my phone up to write this. Is this normal? Is there anything I can do to relieve the tiredness, is that a silly question?!

[Hidden]

Hello

One of the problems with RA is tiredness, the other thing is it also effects the immune system and parts off later treatments is suppression of that system.

Welcome to our site you will have a welcome site here that can give support, encouragement, and ideas

All the best

BOB

[Hobnob]

Hi, Agree with you re fatigue - I get it bad (I'n ready for bed after the fight to get up in the morning). Glad your medication is being of some help. I'm left on Methotrexate, Steroids and morphine as biologicaal treatment (Rituximab) has b**g***d my immune system! So, ~I'm a walking (well, wheel-chairing) zombie.

[Prairie]

Hi I can totally understand about the severe fatigue. I've sat in front of my consultant and explained what you have mentioned and asked him is there anything he can give to help with the fatigue and I really don't think there is..do you have regular blood tests just i had aniemia which doesn't help...I also find taking dmards makes you even more tired...Even though they help in other ways....I'm waiting to see consultant next week so if I find any answers I will let you know...sending you big hugs Nicola x

[Hobnob in reply to Prairie]

Hi Nicola, Sorry you're having such a torrid time, Agree with you re DMARDS but hey-ho, gottta have something out of the government - even if they are only pills on NHS! There are no answers to the fatigue, I don't think. I've been looking for 12 years and haven't come across any. Good luck at the consultant next week.

[Rosie_rabbit]

Evening, and yes I can completely sympathise/empathise about the fatigue. I got home tonight after finishing work, doing school run and I've just sat down after cooking the tea, totally exhausted. I know they say you're meant to pace yourself, but I don't sit down in the evening until I've done what I need to as I know I'll never get up again, except to go to bed!! I can barely make it up the stairs to stay goodnight to the children when they go up at 7.30 and Im not far behind them.

As far as what we can do about the fatigue, I think is goes hand in hand with disease control. When my RA is better controlled I am tired, but not like this all consuming fatigue I'm getting now. I'm hanging on to them retting my meds right and then hopefully getting some of my life back.

Hang in there, as others have said, this site is great for support, even if they can't give you any answers, knowing you're not alone helps. Rx

[Opal76]

Thankyou everyone, your advice is very much appreciated. Totally understand you Rosie re. not stopping until you've finished the daily 'To-do list' it keeps me going to know that the sofa awaits! But that's when the bones creak and burn! Damned if you do, damned if you don't .... as it will say on my stone one day 'you gotta laugh' x

[nevadawoods]

I just joined this site and posted about the fatigue as well. I basically walk around all day with heavy eyelids and the feeling that I could just curl up and nap. I drink two huge mugs of coffee each morning just to get going---and I usually have a cup of tea in the afternoon to keep going. I just take methatrexate, folic acid, and Ibuprofen. The methatrexate has pretty much kept the disease from progressing, but it helps to increase the fatigue. There doesn't seem to be much to do except just try to"power through".

[benjijen]

I'm on humira and sulfazalasine and although this has worked wonders for the disease I am constantly fatigued. People don't understand that! If I say I can't meet them for a meal at 7.30 as I'm tired they think I'm making excuses. I had a meal out for my 60th birthday with a large group of my family, had a sort of nap in the afternoon but felt ill all evening. The problem is it isn't tiredness, you can't just sleep and feel refreshed. I work full time although I start and finish early so am usually home by 3.15. I'm usually in bed by 6.30!! I think this must be what it's like to have a form of ME. If anyone has any suggestions I'll be more than pleased to hear them please.

[MrsSMC in reply to benjijen]

Hi you have summed up my life completely, I often wonder if the docs have if wrong and I do indeed have ME. I did reduce my hours at work that did help, but I am now back to full time hours on my bosses request and the tiredness cycle has started again (within 3 weeks).

[Opal76]

Why are we tired? Was trying to describe it to hubby yesterday. Ended up saying that it was like constantly having to walk up a steep hill! Not on meds yet, just ibuprofen so can't blame that. 37yrs old so can't blame that! Is it due to constant pain and discomfort, is it due to hidden immune battle? Just wondering why its such a prominent symptom?

[denvajade in reply to Opal76]

Hi Opal76 my doctor explained that the disease uses all your energy so there's not much left for living! so you are right there's an immune battle going on. wishing you all the best.

[Rosie_rabbit]

I think it's a mixture of all of it but for me mainly the constant battle my immune system is doing. I say this because if I'm starting to flare then my first symptom is fatigue, so I'm not worn down by the pain then. The pain comes after and does then continue to wear you down.

As for the meds making you tired, this can be side affect for some, but it must be hard to know if you're tired cos of the disease or the drugs. I've been on mtx since august last year as was only diagnosed last summer. I don't think it's controlling the disease as now my latest steroid injection has worn off I'm in quite a bit of pain, but the fatigue was the first thing back, I hate it so much. I don't know though whether the mtx is adding to the fatigue or if it's just the RA.

There are many drugs out there and I take hope from this and finding the right one for me. I hope they get yours suited soon for you. The sooner they're started, the sooner you'll hopefully start to feel a bit better. Take care Rx

[rogerac]

I believe that it is your immune system fighting all the time its like fighting flu makes you tired the problem is its fighting something that isnt fighting back. We are tired because we are fighting and we cant stop it x

[Opal76]

That makes sense, I have to be logical and get to the bottom of things! My daughters Type 1. with Coeliacs and I'm an expert now, just don't like not understanding something! Thankyou one and all xxx

[Hidden]

I think Rogerac has got it right - for me anyhow it's the constant fighting within our bodies that makes us so exhausted. That's what my instincts say and what I relate to anyhow. I have to try and understand things too - it's a good way of coming to terms with having RA although things do seem to change all the time as well. X

[denvajade]

Hi there all the things you say are spot on! My arms and legs feel as though they have bricks tied to them, such a heavy feeling. As to the tiredness, sorry this is how it is, you need to pace yourself and lots of rest during the day, hard to do if you work. Are you on Methotrexate? You may find that adjustments need to be made in your life so that you cope, like giving the children a little more responsibility, do double meals on days you are coping and freeze them for the bad days etc. wishing you all the best.