Feel so unwell

Is it normal to feel so unwell with RA? I mean, not just in pain, but just generally unwell? I had a normal cold last week, and then randomly at the weekend I was so freezing in my flat that everything seems to have flared up. I had to take the day off work yesterday as I felt so rubbish, I'm back today but I'm in so much pain, I've lost my appetite, and I feel tired and have a headache (even though I've taken painkillers). I am so sick of going to bed early and doing all the right things to make myself feel better and then STILL feeling rubbish! I started on hydroxy about 4 weeks ago but at the moment am still in agony. Hellllllp!

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  • Hi natal 1a, this is one of the side affects i have with RA when i was reading your question I could feel your pain i thought i was reading about myself everything you describe was me to a t,I dont know if its a side affect of your medication or not but i did not matter what i did nothing worked,probably a good idea if you go bact to your GP thats the advice you will get from our friends who reply,Good Luck

  • Hello there :)

    Yes, what you describe seems to me the effect of your inflammation on your body. When I still had active RA (now well controlled by my drug cocktail), that's exactly how I felt - kinda feverish and achey without actually having a fever or the flu or anything but it would make me so tired and run down. Is Hydroxy the only drug you're taking? When I started taking meds to take care of my RA, the fatigue and general feeling of not being well vanished so don't give up hope xx

    Take care and all the best, Christine

  • I am always tired too xx hdroxy will prob take more than four weeks to work and sometimes different drugs Are needed

  • Thank you :) I think I just feel so frustrated at times like this as there seems to be a misconception that RA is just a bit of pain that goes away with a couple of paracetamol. I feel physically like I just want to go to bed but because I live on my own I hate going home sick as its just soooo boring! Never thought I'd say I prefer being at work! Haha.

    Sometimes friends don't understand too... Some are amazing but others just say things like 'oh no that doesn't sound nice' and I feel bad for getting upset with people. I'm at work til 3.30pm so not much longer to go!!

    Thank you so much for replying, this forum is a lifesaver at times :)

  • Hiya ... You poor thing ..I know how you feel lovely because I have been the same and been off work 2 weeks.... I hate being off but literally had no energy and just felt like had flu , headache, aches and just sooooo low. Like you so unlike me to be off but had to give in, I work in a school and I miss the kids sooooo much although I have 2 noisy ones myself lol but so many germs there was just picking everything up :(( . Have just changed from Methx tabs to injections so I hope that helps and am I must say feeling better and have got Easter hols off so am hoping gonna be fighting fit when I go back. You know what I really don't think the weather helps its so cold , keep your chin up and keep doing the things you do early nights etc and it will pass really .Lots of love x

  • Yup, that's RA! I also found it a remarkable type of being unwell, as just completely flattened with zero energy and constantly feeling as if I was about to get a cold. I would regularly fall asleep on the bus after work even if standing wedged in a corner, which was completely unlike me. It took a long time to clear, even after the drugs sorted out 99% of the joint pain, but It did improve once the RA was controlled. I do still get waves or days of fatigue, but much much less so and usually my own fault for overdoing things. Polly

  • Hi.

    I can totally relate to this. I've had the same flu like symptoms at least on one day every week where the fatigue & aches just become so overwhelming for the past year or so. I often have to cancel arrangements on the day simply because I don't feel up to it & It makes it hard to commit much to planning things ahead not knowing how i'll be on that day. I've only recently been diagnosed & I think these are quite normal symptoms from what I've read & been told.

    Like you, I've also started on just Hydroxy & my Rheumy made me aware that it'll take at least 12 weeks to start taking effect. If it helps I was also started on a course of steroid injections to help until the Hydroxy kicks in. It hasn't totally stopped the joints flaring but has helped considerably with the fatigue & in turn stopped the weekly flu-like feelings for now. It's only temporary but maybe it is something you could ask about to help?

    Good Luck,

    Charlie.

  • Thank you all so so so much. I've managed to stay at work (clearly I'm not working v hard) and I'm due to leave in an hour, I'm going to have something healthy for dinner and then have a nice restful evening. I just feel soooo tired but I'm taking a lot of comfort from all of your comments. I'm due for a hospital check up on Thursday so ill just have a chat with the rheumy then. At the weekend I had a mini breakdown as my hands were so stiff I couldn't grip and I managed to drop a bowl and then spilt sugar all over the floor! It made me cry for some reason. Haha I have to laugh about it now. It is just nice to hear from people who know what it's like and that won't try and tell me a story about someone they know that's worse off (seems to be what people do a lot)! X

  • I think the NHS should prescribe a crockery as well as the drugs - I've broken loads since being diagnosed! But the dog is quite happy with the extra gifts of food spilled on the floor...

  • I'm a bit cheesed off with DMARDs so your post was a timely reminder of what they've done for me & why I need them. In my experience there is a very good chance that the horrible non-stop unwellness (for want of a better word) will be a thing of the past once the drugs kick in.

    Make sure you lay it on the line when you see your Rheumy because he/she will almost certainly know exactly what you are talking about & needs to know just how bad it is in case Hydroxy alone is not enough. Whilst I'm cautious about steroids in general I did find that a short course of Prednisolone plus steroid injections helped me to get back to some sort of normality while waiting for Mtx to work.

    Hang on in there, things will improve,

    Luce xx

  • So unfair when you are young (and bad enough at any age). I'm officially in remission but still get those mystery days when I just don't feel well and everything is an effort.

    Are you sure your diet is the best it can be? I know there is a lot of current research on links between food & triggers for / management of RA.

    Try to cultivate good friends, work on that work/life balance, find the right support for you and be kind to yourself.

    I hope you feel loads better very soon x

  • Yup, it is absolutely awful when inflammation is high and you feel like you have flu type aches and no energy too. Falling asleep and lethargic. My GP used to say I had "unprovoked exhaustion" from the RA being so active. Meaning in my terms .... I could be knackered doing practically nothing! ... True.

    Hope you feeling improvement soon. Once the drugs take effect the exhaustion side subsides.

    Julie x

  • I´ve been feeling like this for the last few weeks, finally I´d had enough and went to the doctors.

    I´d been diagnosed 2 years ago with what I thought was arthritis (I live in Spain and I think something got lost in the translation) anyway after visiting the doctor´s surgery 2 days ago I now have the correct tablets and diagnosis.

    Natal1 I feel what you are saying, hang in there with the medication it does get better, I´m starting to feel ok again after just 2 days on the tablets. I´m also looking at my diet and all aspects of my life.

    You are not alone

    Jane x

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