So much pain all the time! Hands feet & back!!!!

Hi all, I posted for the 1st time last week, just in so much pain all time! And the s/f from the tablets are starting to bad, getting sick of it all, and to think I have to put up with this for the rest of my life, had a flareup in my hands Friday and have only just started using them now! My wife god love her keeps asking how I am, I got to the point where I just say yea I'm ok! I know she is only looking out for me, but unless you have RA you not going to under stand how it feel,

Ok rant over

Thanks x

11 Replies

  • Hi Marcus well this is exactly what the site is for for people to rant away when they need to LoL! I really feel for you, I felt exactly the same when I was first diagnosed withRA. I like you would tell my husband how I felt that at the end of the day eventually became like you and just said oh yes I'm fine. But I wasn't fine i was in pain, very very tired, and didn't know where to turn.

    I eventually realised with a lot of discussion with my doctors and my specialist nurse that once the drugs got into my system I would start to feel a lot better. They also thought a STeroid injection would help me and they gave me this which within a couple of days make me feel so much better, the pain and swelling went down quite quickly.

    If I were in your shoes I would telephone your rheumatology helpline and ask them for help with your Flare. Also I would make sure I had enough painkillers to help, I was told by my rheumatologist that Panadol as prescribed is one of the best painkillers, also I was giving non-Steroidal anti inflammatory drugs such as brufen. I also found that for me hot packs where very very calming on my hands but some people find cold much better to ease their pain.

    I bet you are sick fed up of all this but when the drugs kick into your flares tend to become much less . There is light at the end of the tunnel, honestly.

    I found their NRaShelpline very helpful and the listens to me when I felt that I didn't really want to talk to the family any more about my on this as I just thought at the time they were getting fed up of it. But they weren't, I found out later, they didn't want to ask me about it because I appeared to to them to be coming very defensive.

    I hope you get some rest today and get some more information on the illness from the Nras website and I am thinking of you and any time you want to chat come and talk to us all here, lots of love A xx

  • Hi there

    Sorry to hear that you are going through such a bad time. I am currently in the middle of a flare up and had a very bad week last week emotionally so know where you are right now.

    Reading your other posts I noticed you are a plasterer. My husband also does this for a living and I cant imagine how painful it would be trying to do it with RA, no wonder you have had to give it up.

    How long have you been on your medication? Do you think it is helping your symptoms?

    Wanted to say hello as it sounds like you are feeling pretty alone in this right now. Whenever I tell anyone I have RA the common response is, your a bit young for that!!!! I am 36!! There is a great lack of understanding out there, but when you think about it, what did you know about RA until it happened to you. There are those of us though, just like you who know exactly what it is like to wake up in the morning feeling in pain and 40 years older than you are! It is a horrible disease, but hopefully you are not going to feel like this forever.

    My RA has always come and gone, I have bad periods and them times when it is really not that bad at all. There are many others on this site that with the right meds are now living relatively pain free.

    Don't give up hope, keep battling on and remember that we are all out here to listen if you need us.

    Emma x

  • Marcus,sorry to hear your going through the mill at the moment it is no fun and i completely understand where your coming from. It gets in your head as well and it pulls you down even more. I keep a lot to myself as well,i cry when it gets really hard for me,so feel free to cry if it gets bad for you(none of this men don't cry milarky either) It is a great release of pent up emotions. Keep on to your rheumy team and doctors about what is going on with you and they will get the drugs sorted out eventually,but with all drugs there is not a instant relief.

  • Hi Marcus, the early days are tough, I thought I was never going to get better. It can take time for medication to kick in or to find the right drug that works for you. Once you do, it can all turn around for you -physically and psychologically. Also as mentioned, steroids can help get you through the early stages.

  • same feeling here mate non stop pain all over for the past year an half and still waiting for a drug that will actually work for me rather than just mong me out. constant head banger make you feel like crap all the time and depressive especially when your surrounded by people that don't understand what your going through. but got to keep your head up as much as possible and carry on until you get the treatment that works for you. hope you feel better soon

  • Hi Marcus your so write not much fun is it. How long have you been taking your drugs for? It can take up to 12 weeks for them to start working.It can also take some time to get the dose write to suit you. But trust me it will get much better when you have found what works for you. If you feel things are not getting any better i would phone your rheumy. Sorry if i have repeated what others have said.

    You are not alone rant as much as you want that's what we are here for big hug coming your way xxx

  • Thanks you, for all the Replys, its nice to know i can talk about it and you all understand.

    I think thats the hard part when ever i tell anyone that i have RA they look at me funny! (and you know what they are thinking!)

    yea been on meds now for 6 month, but only been on MTX for 6 weeks, had STeroid injections last year when i first went to see my rheumy, had each joint in my hand done as it was bad, and one in the back side for my hole/body. i feel the same as i did before i started the meds, i will give until i see my rheumy next, just have to keep myself toped up with painkillers

    the last 2 days been getting bad numbness in my right hand & left leg not sure what thats all about, also get alot of muscle aches! and fatigue is so bad i can be sitting there next thing i know i wake up and 2 hours have passed where i have dozed of,

    Be safe and i'm sure i will be back on later to rant some more lol

    Thanks x

  • I'm sorry to hear your in a lot of pain...when I was first diagnosed it took me ages before I calmed down to accepting it...I still haven't can take a few weeks before meds kick in and if you are feeling sick go to your GP and ask for anti-sick meds...I'm on is an awful complaint and as you said its for life but you will have good days...just hang on in there a bit longer for the meds to kick in...unfortunately, a lot of the treatment is by trial and talk to your wife about how you feel and ask her how she feels about it...I really hope things improve for you soon. Maryx

  • Hi Marcus, I'm so sorry to hear what you are going through and when i read your post i thought that was me sitting in silence not talking to Fran my wife just sitting there thinking is this all i got to look forward to,Marcus talk to anyone who will listen, your wife family friends GPs Rheumy Consultants everyone listen when you talk directly at them let them know how your feeling what your going through don't hold back. What turned me round was joining this page along with the BLF page the help advice and support was second to none and what they did not know they passed me on to someone who did, i have just had a 3 week very painful experience with my RA my hands and wrists 24/7 constantly all for the sake of 5mgs of steroids, We know that there is not a painkiller out there that can take the pain away altogether but if you keep talking there is always something to try might take time but believe me you will get there please don't bottle it up. Good Luck Matt

  • I find that if I say "I'm fine" people believe me, because, like lots of you, I look fine.

    Then they expect me to do things that I just cannot manage to do.

    So now I say "I'm as well as can be expected". People look at me in a puzzled way, but they don't seem to expect me to do things that I can't and even, occasionally, there are some people who want to ask a bit more or offer some help.

    So others here might find a similar form of words to use that don't imply that you are fine, but don't go into detail.

  • Hi,

    Sorry to hear you are in so much pain - I think we can all relate to that on every level!

    I have had RA for 3 years (my 3rd Birthday is on Friday!) and to be honest I am still struggling to get my RA under control. I am on Meth injections, Cimzia injections, plaq and folic acid. But Last year I was diagnosed with Fibro and a fortnight ago I was told I have Osteoporosis in my hips and spine!!!

    I know about pain, and no one knows how their pain feels - so please dont feel like you are moaning - thats what we join for, we understand and can support you through your badest days! (and like me, rejoice in my good days!)

    I have had some very dark days, but I have just started a new job where the staff can't do enough to help me - it's truly wonderful to have found colleagues like that.

    It does take time for the meds to kick in, but whilst being patient is hard, dont forget that the combination you are on might not be right - my advice - get a little note book and make notes of good days and bad - what meds have what effect on you and any worries you have - Then take it to the rheumy appointments so you dont forget anything - its also handy to re-read when you have a good day! I also write down things my rheumy nurses says, just incase I forget!

    I hope you feel a little better soon, and remember we are here!!

    Take care :)


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