Fatigue comes in waves ...

[Rosie_rabbit]

Hey everyone and hope you're all having a good Saturday night. I am really struggling with fatigue at the minute. I know that it's a really big part of RA but what's making it so difficult for me right now is the unpredictability of it and I wondered if anyone else experiences this?

My RA is currently not under control and I'm having the expected pain in various joints etc. I'm also getting the usual severe fatigue which has changed from being constantly pretty bad to having several good days followed by a bad day or two. When I say bad though, it is absolutely dreadful and I just feel so ill, all it want to do is sleep and I'm really struggling to function. I then get up the next day to a more normal RA fatigue, if there is such a thing. But it's like there's a switch in me that at anytime can turn to having to literally crash on the sofa. Then a day, or even hours later it passing.

I don't think it's because I'm not pacing myself correctly. It is however really getting me down. I think I can enjoy a family walk on the beach with the kids and dog in the long awaited sunshine, to find I can hardly move and they have to go without me. I can't plan anything as I never know how I'm going to feel.

In the past I've experienced the bad fatigue and I am, as we all are, always tired. I've just never had it coming and going in this way and wondered if anyone else experiences it like this??

Thanks, Rosie xx

[Hidden]

Hi Rosie, Sorry to read you're having such a tough time at the moment! I can totally understand what you're saying, I've gone from what you would call I guess fairly mild symptoms to completely pain everywhere and fatigue like nothing I've ever known where somedays it's a real effort to move because either I don't have the energy or I can't move because of pain and stiffness.

This complete awful feeling of pain and fatigue started in January and apart from a couple of days when I felt ok...ish has not let up, I was putting it down to the horrible wet winter we've just have had or maybe my RA is getting worse.....a lot worse!!!

I still work and want to stay working but it's a choice at the mo between that and having a life outside of work as I can't do both neither can I plan anything like a holiday or an evening out because at the moment all I want to do is sleep and rest

I'm seeing the Consultant at the end of the month and will refuse to move out of his office ( feeling like I do it will be a job to do so!) until he looks at my medication and listens to me, I'm Sero-Negative so nothing shows up apart from when I have scans and swelling, I did have my bloods checked two weeks ago and it was all normal but I don't feel normal!!! It's a familiar story for a lot of us with RA.

Hope you get answers and feel better soon x

[Rosie_rabbit in reply to Hidden]

Hi Kiki, I'm so sorry to hear that you're feeling this bad too.

Work is a tough call. I have 3 young children and work 4 days a week and about a month ago I just found I couldn't carry on and went sick from work for the first time in 2 years. I know I'm not ready to go back yet. I've had 4 depos since last July but they don't work for me anymore and it's hard to know where to turn.

Really good luck with your consultant and I hope your resolve stays strong. Although when we go in strong I think our consultants know it and can often give us what we need. I'm still waiting for some answers from mine ... Thanks for your support Rx

[Sharon56]

Hi Rosie so sorry to hear you are struggling at the moment. Fatigue is awful and unseen. I think you need to get some medical advice. As Kiki says you have to get the Consultant to listen to you. Listen to me sounding so assertive lol.x

[Rosie_rabbit in reply to Sharon56]

You sound wonderfully assertive Sharon!! I'm sort of in limbo a bit with my treatment right now as I'm being screened for a drugs trial and this takes a little time. I'm hoping to try and get something sorted in the immediate term though as I've had enough Rx

[Angela123]

Hi Rosie. Sorry to hear you're feeling so tired. I'm sure everyone here understands that awful deep fatigue that strikes you down, stopping you from enjoying things and generally getting on with your life. I too am considering my future as regards working. I just can't do everything as I used to, working and looking after the house and all the weekend jobs you have to get through before starting all over again Monday morning. There doesn't seem to be anything to treat the tiredness does there? Hope you get some help and advice when you go for your appointment. Angela x

[Rosie_rabbit in reply to Angela123]

Thanks Angela for your support and yes tough decisions re the job. Going to try and get through to someone tomorrow and get something sorted Rx

[benjijen]

I agree. I can deal with pain but the fatigue is awful. I can't give up work as I live alone and so am responsible for myself. The thought of giving up work and being indoors all day terrifies me! I'm sure the bad weather doesn't help so let's hope the sun is here for a while. I wonder if any research is being down into the fatigue and how to control it. Anyone know?

[Rosie_rabbit in reply to benjijen]

I don't know benji. But I suppose that the fatigue gets really bad when the disease isn't controlled because of the amount of inflammation that our body is trying to fight ... Just makes us sooooo tired. Control the disease and I think you control the fatigue too, that's if the meds don't make you tired lol!, Rx

[totone]

Hi Rosie, think that I know how you feel, I have been off work for 6 months going back tomorrow. There were days I cried with the pain and utter fatigue, I felt that this was it for me and I would never feel normal again but I feel that I am turning a corner and I am also looking forward to going out for walks with my grandchildren. I am just taking each day as it comes as I never know when I am going to wake up with that horrible fatigue. Take care Rosie and I hope things improve for you,Totonexx

[Rosie_rabbit in reply to totone]

Oh really good luck with going back tomorrow xx yes I'm off work right now and have been for about a month. I love my job and want to get back to it Rx

[Sharon56 in reply to totone]

Good luck for your return to work.

[Rosie_rabbit]

Thanks scouser and yes I hope too that someone listens ... Other than you lovely lot on here of course who always listen, thank you. Rx

[allanah]

Hi, it's awful the fatigue aspect. I think when you get on the trial you may feel better quickly and when the RA is better controlled the fatigue seems better, , I hope, so it's worth keeping your options open until you see how the drugs work ,maybe xxx

Keep trying to pace, lol, here's me telling you! me exhausted here after having everyone here for sons birthday, but I will rest up now ! Xx

[Rosie_rabbit in reply to allanah]

Ha ha, when did you ever behave Allanah!! Did you have a good wkkend with your son?

You're very optimistic re the drugs trial ... I think it's a very big if and not when!!

I just wondered if everyone gets the fatigue in the waves as I've been getting which are so unpredictable and show no pattern whatsoever. I'm going to contact the hospital tomorrow as I want to start taking some anti inflammatories as this might help a bit whilst everything is going on. However, the mtx is really starting to upset me with nausea and heartburn etc so I want to switch to injections before trying another anti inflam as they usually aggravate my tum. I do take omeprasole but not helping any more.

Anyway, at least the sun is shining ....

[allanah]

Of course I'm optimistic! You have to keep hoping this drug will be" the one" ha ha.

Yes I do find the fatigue as you say swamped you in waves, then it lifts a bit, but then I do too much cos I'm not too tired , making the vivacious circle as you get fatigued again.

You have a lot to talk about with the docs re trials and changing to injectable mtx, better start that list. I see mind next Friday and hoping I get back on my biologics and he's not a idiot again !!! Hubby coming as muscle ha ha , !! Xx

[Sharon56 in reply to allanah]

Will hubby be dressed in black and wearing a head set like those men on Bouncers? Oh and sunglasses too,

[allanah in reply to Sharon56]

OOOH I hope so! Like men in suits or kilts xx

[Rosie_rabbit in reply to allanah]

Ha ha me too .. Will he be in your vivacious circle, I've always wanted one of those lol !! Xx

[allanah in reply to Rosie_rabbit]

Lol xx

[Lukaduka]

Hi Rosie,

Sorry to hear you are not so good. I know exactly what you mean about 'waves'! Last Monday/Tuesday I felt dreadful like I was coming down with something but it never happened, not able to do much at all, but then felt a lot better. My consultant told me when you are not under control (ie a flare up) it is a similar feeling to having flu and he also said the fatigue is the last thing to improve. Have you had your thyroid levels checked too? Hypothyroidism is common with RA also anemia? Hope that helps and I hope you feel better soon. Sx

[Rosie_rabbit in reply to Lukaduka]

Thanks Susie, that all makes sense to me ... I've noticed the fatigue is always the first thing to show and and the last thing to go when things are out if control, and yes I hate hate hate when it progresses to those fluey aches.

I'm not sure when I last had my thyroid checked, I don't know when someone may have even thought to do this. I'm seeing my gp next week so I'll mention it.

What I am please about though is that after ringing the hospital today they've finally agreed to let me switch to injectable mtx, so I go up tomorrow for my training!! At least that will help with the gastric symptoms.

I hope you're ok, take care, Rx

[Crazyjo]

Rosie, totally understand how you feel, my fatigue seems to work the same way as yours. I find it very frustrating and always having to change of cancel plans

Jo x