In September I had to give up full time work as the fatigue made it impossible to do my job. I have had RA for 9 years and went through the first 2 years where getting out of bed was a major achievement. At that time I claimed on my IPP until fit enough to return to work, ! take Metho, Co-Codomol, Folic Acid, Leflunomide, Plaquenil & Naproxen. Hoped I could work self employed and control my hours but that has proved very challenging so now trying to claim.
Like most of us I have good and bad days which makes it worse in a way as when I'm feeling good I do too much and then pay for it later!
A nurse is coming to see me tomorrow to 'assess me', how do you explain fatigue that means you can never sleep enough or concentrate for very long without sounding like someone trying to swing the lead?
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Ethan
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Ethan,i understand what your saying as you can't see that you are ill and fatigue is a real killer. I had a good day yesterday, today my joints ache like hell. Yes i have a habit of overdoing too and i also pay for it the next day.
Hope things go well with the nurse tomorrow. sylvi.xx
Hi Ethan, i generally say things like, I'm so tired i cant think straight and i always need not want a nap. Or I cant manage to shop as i to exhausted. I have even said, I just cant explain the severe life limiting tiredness!! Its so difficult to put into words but if you are lucky she may have nursed people with RA.
I have been diagnosed since Nov last year. The RA came suddenly and very aggressively.
Over Christmas I became so stiff and in pain I did not return to work for 21/2 months. I am now on Sulph, anti inflam, and have just tried Methotrex. Oh my god the side affects came really bad, mouth ulcers etc, so off that. My hands and wrists and feet are really painful. I am trying Arava so here goes. I did do as bit of research about benefits but when you look at the criterion on the website you have to be almost totally disabled to gain any financial support to keep you in work, even part time.
It is hard to stress to anyone how difficult life is as I often look just fine but I am in agony and keep going. I don't want to RA to take over my life, its so depressing.
Make a list of the things you cant do, time to do things, help u need and also you could write down how far you can walk on a good day/ bad day.
GOOD LUCK ...i AM SURE IT WILL BE FINE...THE NURSE WILL BE ALL UP-TO-DATE- ON RA AND THE CONDITIONS PAIN ......................................
Good luck. I'm a fatigue-bunny too. On paper I look really good - low bloods, no swelling, not so much acute pain, though a lot of general aching - but I am so tired and brain-fogged I am not working at present. Back to Occupational Health on Friday, hoping this time to explore ill-health retirement.
I hope the nurse knows what s/he is about, and that you get positive results.
I am at that stage too Dotty. Seeing Occy health on monday. The fatigue is so difficult to explain to people in work. I seem to get 'we are all tired' But this is a completely different tiredness to working 24 hours without sleep as I have done in the past. Just doing supposedly normal things like ironing and shopping is exhausting. xx
it is a totally different fatigue and no one can understand, it's completely debilitating and life changing, and normal daily tasks are like competing in an iron man competition. I was a runner before RA claimed me 21 yrs ago and i never came close to feeling this tired after a 10 mile run.... hard to except life as it is now/ Does anyone every get the off balance feeling with extreme exhaustion ? this is so bad for me and prevents me from walking freely as i am afraid i am going to pass out because so tired
Fatigue was my main problem also, as whilst you control the pain with taking regular cocod's, nothing seemed to deal with the fatigue.
I described fatigue as being so exhausted, that no matter how much you rested or slept, you never felt rested and it was as if you never went to bed as the feeling of being tired was always present! Even though you may of just woken up after 4 hrs or early in the morning I always felt tired.
I too suffer greatly from fatigue most of the time even after a full 7 hours sleep. I gave up work in February and on my rare good days I regret it but most of the time I realise not working was the best thing. I saw my rheumy nurse the other day and she is referring me to a Fatigue Management course which runs for 6 weeks but does not begin til October so I'm hoping I will learn something there. She is very understanding on the fatigue and totally understands often explaining it better than me. She may be able to give me another steroid jag on Friday before I head to Spain on Sunday for a week's holiday with the OH and the kids, getting the jag is like a holiday in itself as others before have said. Btw my inflammation and joint pain is completely managed most of the time by DMARDS for which I am grateful but the fatigue and brain fog is overwhelming. Fingers crossed I receive the jag and you get some help too.
Can I please say a big thank you to everyone who replied, that was my first post. I cannot tell you how re-assuring it is to hear from fellow suffers, you have described my feelings better than I ever have. I am about to post the result of my meeting.
I too suffer from extreme fatigue which is sometimes more debilitating than the RA. As others have said you can take medication to help ease the pain, but no matter what you do the fatigue is always there. I am a childminder and sometimes find it incredibly difficult to get through the day. I do have to try and incorporate a lot of sitting activities into my day which again can be quite tricky. I have Fibro as well as RA and I have also been referred to see a specialist about fatigue management. Its really difficult to strike a balance and when having a good day its easy to forget and overdo things. That is my biggest problem. I have a good day and think right i'll clean the house from top to bottom and then for the next few days can't do anything because of the pain and fatigue. However I have the same problem as you its getting other people to understand as no one seems to get it. I just get told to have an early night, if only it were that easy. I hope your meeting goes well and you get the answers you are looking for.
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