Is this 'normal' for RA??!!

Hi There

I have had RA for nearly two years now. I have my good days and my bad, although usually they are 'in the middle'... as in, I've had worse, but had better!!

Anyway, I always have some swollen/painful joints and I'm used to that now, and I used to feel abit washed out and tired, but recently (last few months) I've been tired beyond tired, all the things I used to be able to mange (even when my RA was at its worst) I can no longer do because I'm just so exhausted. Yesterday I went food shopping and as a result couldn't get out of bed untill 3pm today - I did try - really - but my legs were so weak and the tirdness so overwhelming i couldn't mange it (and this is what its like when I try to do things). I also have blurred vision (not all the time), I feel really light headed, my body itches all over and I also have widespreed pain all over (not the normal joint pain), I have been to my doctors twice and each time I'm told 'well, you do have RA, so of course you wont feel well'.... maybe the doctor is right? maybe this is normal? its doesn't feel it though!!

Would be nice to hear if there are others out there feeling like this.

I currently take Cimzia anti TFn and steriods

Thankyou for taking the time to read this.

Caroline

11 Replies

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  • Hi Caroline, it sounds like you're having a bad time right now and I wonder if you've spoken to your rheumatologist/rheumy nurse or just your GP? I know were on strong medication but should still expect a quality of life. I don't know if I agree with your Dr saying you should feel unwell purely because you have RA. Personally if I have a tiring day such as a big trip around the shops I do feel tired at the end and try to have a rest day the day after because my body tells me to. I'm not so weak I'm unable to get out of bed though. I'd be wanting a better explanation if I felt the way you describe. I'm on methotrexate and the only time I've felt really bad was in the run up to a bout of tonsilitis last month. Hope you get some answers and feel better soon.

    Paula x

  • Caroline have your thought it might be fibromyalgia. As paula says you need to speak to your rheumy.

    I find if i have a good day and i get things done i pay for it the next day,but i have both ra/fibro. Fibro causes extreme fatigue and tiredness both which i have.

    Hope you soon feel brighter. Sylvi.xx

  • Hi Caroline,have you had your thyroid Checked as this can make you very tired and weak as I have had these problems in the past and I had underactive thyroid,then it went to overactive then after 2 years of this I had it removed may well be worth getting it checked good luck hope you feel better soon. Xxx

  • Hi Caroline, I have had a similar response from my GP. He did try me on B12 injections though as my B12 level was at the lower level of normal. I hoped they would work but they haven't mad a lot of difference. I just want some sort of 'normal' life where I can do things without the terrible fatigue. Hope you manage to feel better soon,

    Lottie xxx

  • That doesn't sound normal to me! I've had this for about 3 years now, and am on traditional DMARDs so maybe you've got a more aggressive type than mine if you're on anti-TNFs as I've not yet been allowed them.... But I can do most of what I want when I want, as long as I try to balance out activities and sleep/eat and exercise properly. So yes I have the washed out days, and the achy days, and the outright miserable days. But most of the time it's ok, and doing the food shopping certainly shouldn't wipe you out like that in my opinion unless you are really unlucky. Start nagging your docs, as there may well be something else that could be added in to help. Polly

  • Hi There

    Thankyou for all taking the time to answer. It was my GP who said it was to be expected, not my rheumatalolgist (he has always been very helpful).

    I will call the RA clinic and try to make an appt... I think i will get more help there than the doctors!

    In answer to a few questions, I have had my thyroids checked and they were OK and Fibro had occurred to me.

    Hope you all have a good day

    Take Care

    Caroline

  • Hi Caroline, I'm sorry to hear you are having such a bad time, try to keep your chin up though. I suffer from blurred vision too since I've been diagnosed, it seems like it takes me longer to focus !! Been to the opticians though and he says that I dont NEED glasses yet. If I was you I would change Doctors, what an ignorant attitude that person has and how insulting to all of us suffering with RA. If my doctor was like that I think I would have punched him lol. Speak to your rheumy team and ask to try some different drugs. Keep badgering everyone until you get some proper help.

    Take care and rest up, I'm sure you will turn a corner soon.

    big hugs

    Alison

    x

  • Hi Caroline,

    Have you had your bloods checked recently? Anaemia can sometimes be a problem and I've heard that it can cause itchy skin.

    Judy

  • Hi, I am anemic and take precription medication for this, and am doing quite well as my blood count has gone from 9.3 up to 11 over the months, so its getting better all the time.... could still explain the itchy skin though!

    Thankyou for taking the time to message me

    caroline

  • Hi, you have not said how long you have been on the anti-tnf, as I was like you before I started anti-tnf, over the months I am gradually improving. Food shopping is still a problem, online shopping has been suggested, although I prefer to actually see the produce I am buying. Just listen to your body and move when you can.

  • Hi Georgie,

    I have been on the anti TFN since September last year... maybe a change of drug? - have appt with RA consultant tomorrow, so hopefully will get something sorted.

    caroline

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