RA

Hi, I was diagnosed with RA yesterday and although I have been in a lot of pain and feeling unwell lately and very tired, I never thought in a million years of this, and feel very shocked and scared of what is to come. The thought of all that medicine I have to take and reading the internet on this condition I am really worried. My family think I am putting it on when I tell them how much pain I am in, they do not understand what I am going through. Should I be worried or will I be ok with what is to come. Is it normal to feel like this.

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  • hi sorry you have rd its a hard one to get your head around I am still in shock 9 months since I found out and learning about it each day glad I found this site i am reassured we are all different and you cannot tell what your condition will progress like but take strength from what others have been through and come out the other side ok , have a few tears along the way and remember there is always someone to help.

  • Hi, sorry you have been diagnosed with RD. Everyone feels shocked, and wonders how they will cope at first. You will get treatment, and progress may be slow, but I think the worst time is where you are now, bewildered and scared.

    This forum is a great support, and for reliable information, go onto the NRAS site. They also have a great help line.

    Family are difficult to cope with. Sometimes they really don't want to know, because you've always been the one to lean on, and it's difficult to accept that things are different. Sometimes it is plain ignorance of the effects of the disease. Either way, there are NRAS leaflets that can help them to understand.

    I do hope that you get the support that you need, and speedy treatment. Do remember that you are not alone, we've all been there, but somehow we do get through! Thinking of you. M x

  • Thank You, it is a great help to hear from people who understand.

  • Good advice--I have been journaling a lot about my journey with RD. This gives me an outlet for my feelings and hardships with the disease and keeps me from wanting to talk about it to people who don't really understand.

  • Please don't believe everything you read on the Internet. Many people, myself included, do ok with RA. I was as shocked and scared as you to start with, but my worst fears have never materialised and I've realised that forums like this tend to be used when we have bad days, and not when things are going well. So they don't really show that the majority of people do ok most of the time. My life is fairly normal now, just with lots of pill boxes.

    Stick to the trustworthy sites like arthritisresearch.org and the NRAS site. NRAS also has material for friends and family, so maybe leave some lying around the house and hope your family bother to read it.

  • Hi. Just to say that 3 years ago I too thought this pain is too much to take, and the thought of the meds I'd have to take was frightening, but as has been said things can certainly improve. Earthwitch is right, people whose RD is stable don't tend to use the forum because they're getting on with their lives, which is brilliant.

    In my own case after taking methotrexate at first and then sulfasalazine and hydroxycloroquine, the benefit is incredible.

    I just wanted to reassure you that life can improve, and these meds are different for each one of us it seems, so don't despair although there isn't a cure yet life can get to being almost normal.

    Carolyn

  • Thanks Carolyn, it is so good to hear these words

  • Also sorry to hear that you have been Diagnosed recently with RA. I was diagnosed just over a week ago & I felt the same as you, what the hell have I got to face in the future.

    I saw my Rheumatologist last week who put me on a course of Steroids reducing over a period of 1 month well 7 days on & I am almost pain free it's the best I have felt since January 2014. I see my Rheumy in 5 weeks time for further blood test results. So please don't think that there is no light at the end of the Tunnel I know there are different levels of RA but also don't always believe what you read. I hope you get some relief soon.

  • Thank you for this information, at least I know I am not on my own with this, hopefully the treatment I will get will help me to feel better too.

  • Hi

    I KNOW how you feel at the moment and is tough at first and the pain can be persistent and very intense. But with treatment you can get your life back eventually

    But their is no magic pill, your Rummy may have to try different treatments as no one person reacts in the same way. After 6 years my friends and my family still do not fully appreciate how this illness affects my life. But I found attending N.R.A.S. monthly meetings a great help and I have picked up lots of tips on medication and other helpfull

    Advice. So I would look round your area for some kind of support group or contact their head office and they will be very helpfull in your search for help.

  • we all know at the beginning it can be just awful. some of us respond to the first line of treatment, usually Metatraxate. other need different type of medication. you will find out about these as you go along. it is realli important to remember that RD and its treatments are different for each person. there is one fix fits all.....it just doesn't work that way. as someone else says, the beginning of this disease, the time spent in finding what is right for you, is the worst time. once you stabalise you will find yourself feeling better about yourself and your life.

    have your family look at this site, it may help them to understand a bit better....

    butyoudontlooksick.com.......good luck and all the best and abov all keep in touch with this site. XX

  • Thanks for your kind information, it really does help me to hear these words, it gives me a little hope that things will not get to bad and I can get rid of the pain I am feeling now.

  • Hi Masymae. I really feel for you because being diagnosed with this horrible disease is really awful but at least you now know what is wrong with you and can start treatment. My advice is try not to read too much on the internet. You will drive yourself mad and be scared silly. I really cannot understand why so much destructive information is published. Of course the medication is harsh but so is our disease. When I was diagnosed 6 months ago, my clinical nurse told me that if I had to have this disease, it was better to have it now than 10 years ago and she was right. At least the medication is available now for us and it does really help. I now do all my own housework, walk my dog regularly and am determined to carry on with my life. Anyway Masymae, don't let this disease beat you, you beat it and show everybody that you WILL NOT give in. Good luck.

  • Thank you so much, it really helps to talk to people who know what I am going through, others just don't understand. It is so terrible to be diagnosed with this horrible thing and getting used to feeling unwell is not very nice, at least I know I am not the only one and people carry on through this, I hope I can and things don't get too bad. Thanks again for your kind understanding

  • Hello! This sounds like one of the first posts I made as I was first diagnosed with RA on June 4th. Trust me it will get a whole lot better for you. I felt hopeless at first especially with the excruciating pain I was in. It's natural for us to go do our research on the internet to get information of the unknown. I personally found it to be too much. While this site was helpful it also was a downer so I deactivated my Healthinlocked account and I tried not to live on the internet. The best suggestion I can give you is to be patient, take your meds because there is a brighter side on the other side of the rainbow. I am now back on and feeling so much better about me, my future and RA.

    Good luck to you :-)

  • Thank you so much, it is so comforting to hear these words. I don't feel so alone. Should start some medication tomorrow so hopefully I will feel better. I am having some horrible pain at the moment and feel so tired and rough. Hope it helps. Thanks again

  • Hi masymae

    And welcome from me too. I was diagnosed just before Christmas and like yourself couldn't believe it, it was such a shock.

    As others have said, the first bit is the worst and it does get better with time and meds.

    Just wanted to add that the meds take a while to kick in, some people are fortunate and respond within weeks, others, like myself, take longer. I am still trying to find the correct combinations of drugs to help me. Just didn't want you to expect to feel better instantly!

    What has helped me while waiting is steroid injections. Not a good long term solution but an absolute blessing to help relieve the pain and inflammation.

    Good luck with meds and hope you feel better soon x

  • Thank you, I have just been to the hospital this morning and they have given me a steroid injection and some medication to start for two years. I'm not looking forward to all the medicine, especially if there are some side effects, and some folic acid to take once a week. I am doing an observation study for the hospital for 18 months so they monitor you more, which is a good thing. Sorry to hear that you was diagnosed as well. It is a horrible shock with this horrible disease, its such a good thing to catch it early. I have felt terrible for the past few weeks, but it seems to be coming on really strong and feeling worse day by day, the pain and muscle aches are horrible, hopefully our medicine will work and we can all feel better again. Take Care

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