Hi Naomi

I too suffer badly with fatigue. I am currently off work as only diagnosed in November of last year and just had my second injection of the biologic Humira. I'm still struggling with the pain situation too but am optipistic that there will be light at the end of the tunnel. Have you been taking the biologics long? I am sleeping mid afternoon just like you and don't have the energy to do even the most menial of tasks!! Not bad for a qualified fitness instructor who up to last July was working out at least 5 times a week .

I do hope you start to feel better soon take care

Donna X

Hi

I think that fatigue is one of the main symptoms of the disease. I took early retirement from work because I couldnt cope with having to be up early and being shattered all day. Even now I am retired, I am still tired but find if I do things slowly I get them done, rather than trying to keep up with everyone else. I am on Humira and Leflunomide and am currently having a really bad flare. I wish there was a magic drug to end tiredness but I think we all just have to get on with it!!!

Louise

hi Naomi,

for me the fatigue was worse when my RA wasn't under control .. it has taken a good 18 months to get to that stage.

once i started Humira last August and my RA has become so much better the fatigue is definately better.

there are days when i do feel tired, but i also feel that since being under control my spirits have been raised which has a knock on effect in the way i feel overall. it's easy to get so bogged down when you are in pain, feel like nothing is working for you, and so on and so on.

i am sure once you are on the right combination then things will improve overall for you.

Suzanne x

Naomi

I think fatigue is the worst symptom of RA. For the last three years, if the pain is bearable, I have gone to bed, slept soundly for twelve hours and still feel as if I have never been to bed. Sundays are my nightmare day as I take Methotrexate on the previous evening. I feel as if I am in a fog all day. Like JulieM I have to conserve what energy I have to get to work three days a week and then spend the rest of the time lounging around to try and conserve my energy which makes me feel really guilty. I want to have a social life, I want to go shopping but I very rarely have the energy to do this.

However, I always tell myself that things could be a lot worse. I watch a lot of hospital programmes (I always wanted to be a Doctor but the opportunity never arose for me to go to University) and I count myself lucky when I see what people do have to go through with their health. Yes we have a chronic, incurable disease, but there is hope for the future that they could find a cure and also our life span is not cut short by decades.

You are also in the early stages of your medication and if they move you on to anti-tnf's in the future, you may find that this does control your RA and your fatigue may be a horrible memory from the past.

Keep hoping and take care

Jackie
xx

Sylvia, is that you on face book from Newton Abbot with dark hair. There are a few Sylvia Dell's out there. If you friend request me we can chat on line. I'm easy to find on fb as my avatar is the same as on here. Naomi, x

Thanks Jenni. I saw a counsellor for 6 weeks recently and sleep hygiene is one of the things we discussed. However I cannot function without my 2-3 hour nap in the afternoons. I always sleep soundly at night too so I think I need all this sleep. If I go without my nap then I feel so dreadful in the long run. My body just seems to be begging for sleep. For now I'm giving in to that urge. In the past, before RA, I would catch up on sleep and then feel great. Life's just not like that now. I simply run right out of steam in the afternoons. Like my energy comes to a dead halt. Oh well....such is life with RA for me at the moment. :)

hi,i do the time out as well in the afternoon,dont always nod off but have a book at the ready, just the feeling of in another place for a short recharge, my o/t taught me to self relax but i get a migraine from it so no can do she did say just a rest is as good,now use a book and a lie down on couch or bed,give meds time and pace yourself more if the sleepy time hits,i took a long time to get into pacing,i have friends older than me and they have loads of energy and dont get the fact i cant go on forever, because it is not always visable people cant connect it to being there, hope your ok soon have a nap girl,dorothy

Hi Naomi

When I was first diagnosed with RA, around 9 years ago, I'd get up, have breakfast and have to go back to bed. And that was after 12 hours sleep! However, 9 years later I sleep 7 or 8 hours most night and rarely need to sleep in the day. Mind you, I don't do much so don't get worn out . From time to time I do suffer with fatigue but that's mainly due to anaemia which is, of course, something that affects a lot of us. The RA literature generally says that the fatigue should wear off once the RA is under control, so please don't think you're always going to feel the way you do now. x

Actually that's a good point that Andrea made---have you had a check for anaemia Naomi?

I saw the nurse yesterday and she had a really good explanation for the fatigue - I had been explaining that I never seem to get coughs and colds - apart from RA I'm really healthy! She said that's because of the RA! Apparently with RA your body's defenses are on constant alert, and they don't switch off as normal.That means your immune system is alwys ready to attack anything that appears the second it appears so colds don't have a chance to get established. Of course that also means your immune system attacks stuff that isn't actually a threat hence the inflammation - but all this activity takes energy and that is what causes the fatigue. That made a lot of sense to me, and at the mo I've got no inflammation and no fatigue either - so hopefully once your meds settle down and do their job then the fatigue should diminish. I'm just starting on MTX (on Monday!) and will finish course of steroids a week later, so I'm expecting a bit of a flare up and am likely to feel a lot more tired for a while. But hopefully it'll only be for a couple of months as it takes 3 months for the MTX to "build up".

Re the anaemia - I'm 90% certain that they do check each time, but you can ask for a copy of results to be sure. The nurse gave me a little booklet so I can record the details and keep track for myself - I think I'll try to do that, cos all knowledge is helpful in understanding, and that's the key to controlling it