New To This

I am very new to this and only just found out about this site recently, it is so good to know that there are people out there that can share their experiences and help others at the same time . I was diagnosed with RA last year and started taking methotrexate in November, the doctor started me on a very low dose and that was quickly increased to 10 tablets a week, I am also on 400mg of Tramadol a day for pain relief which can be quite extreme. Recently I was also given Naproxin to be taken daily to help with the pain and inflammation I was still getting in some of my joints. I have found that the medication is definitely helping but I am still getting a lot of pain most of the time and seem to be tired all the time? Does anyone else feel like this? Is this normal ? I am still in full time employment and have quite a physical job , but was advised by my specialist to think about cutting my hours down as I normally come home at the end of the day totally exhausted so by doing so feel I might have a better quality of life and more time with my wife and family. Can anyone else relate to this and maybe help me decide the next step to take. Thanks Jim.

15 Replies

  • Hello Jim,

    Welcome to this community site where you will certainly be amongst like minded people who are experiencing much the same problems as yourself.

    A lot of us have real problems with the tiredness that goes with RA, so you are certainly not alone. I personally think that your specialist has given you some good advice about cutting down on your working hours if you can manage it.

    I'm actually retired, so I didn't have to make that decision, but I can imagine how difficult it is to keep going because I struggle with just keeping on top of my household chores.

    "Pacing" is the keyword for dealing with the tiredness and exhaustion, do a bit and then rest a bit is my best advice. I'm sure you will have plenty of other good bits of advice from other's here too. So take care and I hope you will find this site as useful and enjoyable as I and many others do. :-) June xx

  • Hi All

    Thank you so much for your replies and advice, I am feeling better already. I think for some time now I have felt alone and not sure what was normal and what was not. I am so grateful to have been directed to this site.

    I have been trying to pace myself at work but having been very active before the RA kicked in, when I do have reasonable days, I do tend to forget and overdo it, but here's to a new mind set and I will try to delegate more often and rest more to. Many thanks.

  • Hi All

    Thank you so much for your replies and advice, I am feeling better already. I think for some time now I have felt alone and not sure what was normal and what was not. I am so grateful to have been directed to this site.

    I have been trying to pace myself at work but having been very active before the RA kicked in, when I do have reasonable days, I do tend to forget and overdo it, but here's to a new mind set and I will try to delegate more often and rest more to. Many thanks.

  • Hi Jim. I was diagnosed 4 yrs ago now and I'm in full time work, so know how difficult it can be to keep going. I agree with June on pacing yourself, it's something I'm still trying to get the hang of as I tend to push myself too hard!! The drugs do take a while to kick in as it were. I am on MTX, naproxen, sulphasalazine and hydochloroquine and I am now stable thank goodness. So whilst i cannot do some things i used to i count myself lucky. So keep taking the pills and good luck. Stuart.

  • I wonder whether you need to be having a discussion with your consultant about whether MTX alone is enough for you? It's only just on 4 months, so early days, but you still seem to be taking quite a lot of pain relief. I started just on MTX, and it was great compared to where I was before, but just on it's own it didn't quite do enough. However, once I had two other DMARDS added in (Hydroxy & Sulpha) things improved further. I still get more tired than I used to pre-RA, and do have bad days here and there, but generally life is good again. It did take me well over a year to get to a semi-stable state and perhaps 2 years to find a new way of living, so not exactly speedy.... And during that first couple of years I did stop working full time, and now only work part time. Financially not brilliant, but it made a huge difference health wise and I've not really looked back since. And it's now rare that I need to resort to heavy duty pain relief. Polly

  • Hiya, welcome to this lovely site, I was also diagnosed last September by my GP and had to wait until November to see a rheumatologist to confirm the diagnoses, I to have a very physical and demanding job and have been unable to work since last June when my problem first started, Good on you to be able to keep up with a full time job it really can't be easy, My Manager has been really supportive and has told me to take as long as i need to get my meds correct and to feel as good as possible before returning, i am also on MTX hydroxy Tramadol and others to help me, I have now just stated to feel the affects after also having 3 steroid injections in my buttocks and 1 steroid into the knee 2 weeks ago, What you have to remember is that everyone is different, some people take to the meds really well and some don't, This site really helped me to understand my condition and has given me so much support, i have also been lucky as i have had a great medical team around me,

    I am hoping to start back to work soon, but as you have said there is no getting away from the tiredness unless you learn to pace yourself, i also found this hard as i was a very achieve person before i got RA, I also would recommend that you try reducing your hours for a while to see if you can cope better, but then it could affect you financially, i have just found out that i can return to work on less hours and can claim a benefit called permitted work, i can also carry on claiming contribution ESA at the same time, this is to see how many hours i can cope with,even if this doesn't apply to you now you might find that it could help you in the future, I hope not mind you and that the meds really kick in and you can carry on with your life, which does happen to a lot of people, so good luck and welcome again xx

  • Hi Jim

    Welcome to our community.

    The tiredness is due to the disease and the meds we take. There are those of us who work full time, part time or not at all, I think it depends on the severity of the disease, but in truth I think it's due to how much help the employers give or a bit of both.

    I hate the tiredness also most of us do, you'll hear the words "pace yourself" and that is true, but you still get really tired. I guess its part of the disease. But try to have rest periods or days off, after doing lots, you'll need them to help you recover.

    You'll get lots of support and encouragement here.

    Looking forward to more future blogs

    Joanne x

  • Welcome too xx

  • Hi Jim welcome :-) agree with others about pacing yourself. It is early days, as been said, but hopefully with the right meds combo you'll feel a little stronger soon. As for cutting your hours, if you can afford it financially then you might want to consider it, especially as you say your job is quite a physical one, but only you can decide that. Take care. Love Janet xxx

  • hi jim ... i cant add anymore , to what already as been said , but welcome to the site , jim .. im sure the site will be a great help to you ,,, never be afraid to ask a question no matter , how big or small ,, this site is full of lovely people , who can help and share knowledge ..

  • Hi jim tiredness is hard to cope with i am struggling working full time and am in complete denial as i didnt want to have ra affect me but am realising it is. My meds sulps and hydro dont seem to be doing any good at all . Right now eveything hurts. this site really helps.lots if support when needed

  • hi jim,

    welcome aboard, there are lovely, helpful , kind and supportive fellow RA sufferers on here whom i must say are fantastic with lots of sound advice, i have only joined myself not long ago and i really appreciate the site. Its helped me tremendously. ref decreasing work hours, why dont you get some advice from CAB or Benefits office about cutting down hours of work and seeing if you are entitled to claim anything to build your pay back up.Also if there are any other benefits you can claim, might help , Then you could see what your options are .Tiredness i can relate to that, my sleep pattern is all over the place at the moment so rest when you can do not over work yourself it will cause problems in the long run and could cause what everyone calls flares in our RA, which is when RA goes wild and lets you know you have it by being quite bad. Good luck hope all turns out for you and welcome. :) lena x

  • Hi to all you lovely people that have replied to my blog. I want to thank you all for your sound advice, I have taken everything on board and will do some serious thinking. I know it is early days yet but it is good to know whats, what and where to go from here. It is just so good to have so many caring people that understand and know what it is like. I will certainly be a regular to this site and hope, like you all, will be able to help and comfort others in the future. Thanks again. :)

  • Hi jim, sorry to come to your blog late. Nice to have u on the site!

    Well my point of view is based on the fact that after a year of treatments I still hadn't responded to treatments and eventually had to agree that I wasn't well enough to do my job and was retired on ill health. It was hard at first as a lot of my friends were my colleagues, but specially during this winter it was a joy not to have to get up, do stretches, take painkillers and go to work.

    I did have to take into account finances and for this reason we won't be having a holiday abroad this year, which we always have. But I have been allowed some ESA and a pension from work which really helps.

    Also I did go through the process with HR and Occupational health about "access to work" if you look it up ! your employers should allow you different pieces of equipment, ie adjusting your work station, giving you a trolley, reduced work hours if due to your illness you cannot do that task. Look it up, it's very helpful.

    Pacing, ye I am rubbish at it and always forget and end up exhausted! But if you want to work all day and sleep all night and weekend this might be worth it till your meds kick in so you can work there are many people here like Sci Queen who struggled to work and when she got the right meds I am sure she will say it has helped her so much. But others like me it just wasn't viable.

    It takes a lot of time to sort out your feelings towards RA and the treatments and it seems quick for your doctor to be talking about leaving when you have only been on the meds a few months. If the mtx ate doesn't work they will try something else!

    So glad you gonna stay on the site as we all get on well here and although we moan on sometimes we have a laugh too.

    Have a good day Axx

  • Hi Allanah. Thank you so much for your reply. After some good advice from these lovely guys and gals on this site I am starting the process of cutting my hours at work. I think my specialist was more concerned about the quality of my life and from her experience a lot of her patients have had to either cut their hours or give up work completely. At this point in time I have got no intention of giving up work completely but cutting down my hours giving me more time to rest and hopefully more time to enjoy my family is priority. But as we are all aware we really do not know how this illness will affect us in 6 months or 12 months time we live in hope that our medication will kick in and we can lead a relatively normal happy life, which I hope for everyone here. But I do need to be realistic and if and when my meds kick in properly I can always go back full time if I feel that it is the right thing to do. Like you I am rubbish at pacing myself and always end up doing too much and then suffering the consequences. So here's hoping that my work understand and are sympathetic. Thank you again for your helpful advice. Jxx

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