WILL I EVER START TO FEEL NORMAL AGAIN ???????

Hya so sorry to have a moan but you all seem to know and understand like no one else does , So cheeeeeeeesed off at the moment been diagnosed for 2 years now i started off on hydroxychloroquine sulphate then salazopin and now MTX and folic acid , I thort being on all of these would make me feel better but im sad to say im still in constant pain i do take cocodamol and diclofenic for pain relife well some , but the hands ,the feet the neck and now the hips and the knees have decided to join in , still in constant pain after a bad cold last week things are getting worse I do read what every one blogs and do feel some relife from your comments but it don`t take the pain away Being an auxillary nurse i see sick people at work but if only others could see what we`er going through .So sorry for the moan but feeling pretty low at the moment . I want the old me back ????

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  • Hi Sue,

    Sorry you're feeling low - but you don't need to be sorry about having a moan. This disease is tough to deal with day in, day out. I'm on same medecine mix as you and also have bad days where I wish it had never happened, and really feel worried that I'll never be able to live full life again. One of the things that keeps me going is that I'm so much better than I was - at it's worst I couldn't really get out of bed. Hopefully you've had some improvements in last 2 years? Looking at how far I've come makes me believe that I can do even better. Can you give yourself an extra bit of pampering - hot wax hand baths, or wheat pillows or something that soothes a bit - you really do deserve it especially if you're a nurse. I hope that once cold dies away you will feel a bit brighter and have less pain. Take care of yourself. Polly

  • hi sue,

    i hope you feel a bit better today, big hugs :) i totally understand how you feel, 2 years in is a long time (im 13 months and its hell) maybe you should return to your rheumy and demand a drug that gives you a better quality of life. i think we are all flaring, it must be something to do with the weather. people are not as sympathetic and understanding as they should be, the seem to hear only the word 'arthritis' and be all like ooohhh i have that in my knee/hand/elbow/eye/arse!!! and they dismiss it :( i think a name change would be amazing!!! theR.A should stand for Ruining Arsehole!!! Raging Agony!!!! have a good day and i hope you feel better x

  • Hi, sorry you are feeling so crap. I am also 2 years into this awful disease!

    Have you been given prednisolone at all? I only know that this helped enormously at the beginning ........then, of course, they want to wean me off it.

    I bug my doctor a lot, I ring the rheumy nurse a lot and I don't care if I am a nuisance. I expect a lot of support from them and I get it.

    I also cosset myself. Lots of hot baths, warm bed at night, - even in the day.

    If I sleep well without pain then I can get through the day.

    Also if I have to tell anyone what I have, I say it is an auto immune disease that is attacking my body. They seem to understand this more than saying rheumatoid athritis!

    Bad days are very upsetting to say the least, Christmas time can add extra stress so take care of yourself. X

  • Hi Sue, I pray that you are feeling better. This is a terrible, lonely, painful condtion. Something I would not wish on anyone. we all understand the pain you are in. You are not moaning. Pls never think that. Since I found this site, I feel some what better due to the fact that I realize that I am not alone. I believe the weather is playing a big part in the pain. Any kind of stress can cause a flare. I did a little too much for the past several days, right now the pain is so severe that I think I am going to lay down for a bit. If I push too much it will only become worse. Pls take care of yourself. Call your rheumy, tell him/her what is going on. It has taken me several "cocktails" of medication to finally see a little bit result. There are so many people on this site that do understand. I am so thankful for all. I just wish I had a magic wand and could make it all go away for everyone. God Bless, Linda.

  • Hi Sue, I have had RA for 8 years. The first 2 were the most difficult. I am in agreement with the others that finding something that works better for you should be a priority. Methotrexate and Biologics work the best for me. Everyone is different. Illnesses will through you off. Stress will also.

    Normal, will you ever feel normal. No. This is a new normal. You will have good and bad days. But, you really should be feeling functional and OK. So, don't give up until you do feel pretty good. There are days that I barely feel pain. I can walk (which in the beginning was very difficult) and I can work a certain amount. I enjoy my life and that is my New Normal. Don't push yourself and rest or nap everyday. Hot tub helps and so does some massage.

    So sorry you are going through this. It is so yukky, (understatement). Please don't give up. You can feel better!

    Good luck!

  • I agree with all the above comments - it can be a very lonely and distressing disease, especially in the early months and years.

    '

    'Pester power' works - shouldn't have to happen, but it's a reality!

    It sounds like you need better pain control (stronger drugs for night times etc} and something like a steroid to control the inflammation until you have a more effective drug routine.

    As eduk* says we live with a new normal - and this changes with time. When you are more mobile and have better pain control it will be easier to accept this - it's a case of living long-term with RA whereas at present it feels like a battle to be fought day and night.

    Never feel that you have to apologise for venting in a blog - where else can we go with this stuff? There's always plenty of support on here for you:-}

    Cece x

  • It's no suprise that you, me and everyone else with RA (and etc.) suffer from being cheesed off and depressed. Constant pain day and night gets to even the most patient of us. And all we want is a more normal, painfree life,

    From January to 2 weeks ago I was having trouble getting up and down the stairs and then I was given a steroid injection. What a difference.

    You are a nurse, what would your advice be to the people you deal with?

    If you asked for my advice (sorry giving it to you anyway) it would be "go see your rheumy team or your GP, there are other forms of pain relief available, so go ask if there's a better one for you". You deserve to be as pain free and as normal as 'we' can get. In fact more so.

    Every day in your working life you make a difference to someone. We are all grateful to people like you. Bless you and the rest of the nursing fraternity !!!

    Judi xxxx

  • Hope you are feeling a bit better today, I think we have all felt like you, It can take so long to get medication to suit, I hope they get you sorted soon x

  • Hi, sorry to hear you are so bad at the moment - what is your CRP like. I too was on the same drugs and only had some temp relief with steroid injections, none seemed to work and as my CRP just kept going up and up I was then started on anti TNF - is that an option for you? Whats your DAS score- sounds like it should be high- get back to rheumy nurse and say it like it is! If none are working- like they weren't for me they should be exploring the ant TNF route.Take care, rest and pamper yourself, x

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