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To anyone struggling out there

rubixcuberubixcube Posts: 7
edited 16. May 2018, 04:10 in Young people's community
I posted here in January 2013 and remembered the anguish I was in then, and the help I received from people on this forum, so I thought I'd pay back my dues and offer support to others who are currently in the position I was in back then.

Almost four years ago I was diagnosed with sero negative rheumatoid arthritis after years of going to the doctor and complaining about joint pains. I was told my pains were psychosomatic.

After getting the diagnosis, I felt relieved in my problems finally being recognised, but I also fell into a black hole of despair. Why me? At the age of 21,was this some cruel sort of joke? My physical health was terrible, I could barely walk and had constant pains in my hands and wrists. I had to take 3 months sick off work while I tried methotrexate and dealt with obstinate rheumatologists at my local hospital.

The reaction to methotrexate was terrible, and once I had changed rheumatologist to a better one in London I was able to start Entanercept injections alongside hydroxychloroquine and steroids (after a year of beaurocracy and having to take 3 month course of drugs to clear my system of small traces of tuberculosis). After 6 months I noticed an improvement which steadily grew more and more noticeable. The steroids made me constantly hungry and fat and I was glad to finally come off them sometime on late 2013.

Moving on to 2014 to now, I feel a new person. Through the support of friends, family and my university I have never felt so good. I have almost completed my law degree and plan to study a postgraduate course at Oxford. Although I suffer with occasional pain, it is nowhere near as bad. I have never felt so good, and have been signed up to the gym since August last year. Through regular swimming classes, pilates and, believe it or not, weight training I am physically fit, muscular and strong. My arthritis is in remission and my blood tests show it. Mentally, I feel I could cope with anything this disease throws at me.

Just wants to share, no matter how bad you are feeling, if you feel like giving up, never lose hope. There are modern treatments for this cruel disease and hope for everyone. I know some people may be affected worse than me, and I am by no means generalising that everyone would recover like me. I hope this post helps some people, and I am available for anyone who wants to talk or needs support in what is a difficult period for you.

Comments

  • Sarahd1609Sarahd1609 Posts: 64
    edited 30. Nov -1, 00:00
    Thank you Rubixcube. It's do nice to know there is a light eg the end of a dark tunnel, or at least mini lights along the way. Your comments have given me hope as I have to admit I have black days where I just want to wallow in self pity. It's pathetic of me I know as there are others worse off than me but I think I need to get back going again. Xxx
  • Ellieb91Ellieb91 Posts: 2
    edited 30. Nov -1, 00:00
    Hi Rubixcube,

    Reading your post after just joining the forum all I could think was "that's me". I was also diagnosed with Rheumatoid arthritis in January 2013 at 21 years old. I cried and cried, I couldn't understand what was going on and like you say why me at 21! I also then started to hate myself a little for being so upset about it when I knew people were always worse off than me.

    After a virus in December I can only describe the last 6 weeks as painful and tiring. On Friday I was also diagnosed with Fibromyalgia and finally felt this weekend that I genuinely have a real lack of understanding about everything that is happening with my body and in some ways I've almost ignored it. I can see from your post that this forum has really helped you and has made me feel much less alone, so thank you!

    I am thankful everyday that I am here and that I can still work and do most of the things I want to do. But nobody can deny that sometimes it's just pretty rubbish!

    x
  • moderatormoderator Posts: 4,093 mod
    edited 30. Nov -1, 00:00
    Hi Ellieb91

    Welcome to the forums where I'm sure you will get a lot of help and good advice from all the lovely people on here.

    It is a little quiet being the weekend, but I'm sure that someone will be along shortly to help. Also, this post is quite an old one and so Rubixcube may not have visited us in some time.

    We are here if you need any support to do with using the forums. Many of the mods have some of the many varieties of arthritis and we all know about the feelings that go along with having it.

    Do read and post across the different topics that you will find here.
    All best wishes
    Mod B
  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    Hi ellieb91 :D I think rubixcube must be feeling so much better he / she no longer posts on here. It happens quite a lot and I guess that's a good thing. However, it can leave you newbies with only us old hands to 'talk' to. I was diagnosed with RA at 15 but that was 55 years ago now. Anyway, I'm still here, not exactly fighting fit but it's been a good 55 years on the whole.

    Often younger members gravitate over to the Living With Arthritis forum. It's more mixed, age-wise, but we still have the main thing in common – unfortunately :lol: Why not join us there?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • rosemaryandtimerosemaryandtime Posts: 6
    edited 30. Nov -1, 00:00
    rubixcube wrote:
    I posted here in January 2013 and remembered the anguish I was in then, and the help I received from people on this forum, so I thought I'd pay back my dues and offer support to others who are currently in the position I was in back then.

    Almost four years ago I was diagnosed with sero negative rheumatoid arthritis after years of going to the doctor and complaining about joint pains. I was told my pains were psychosomatic.

    After getting the diagnosis, I felt relieved in my problems finally being recognised, but I also fell into a black hole of despair. Why me? At the age of 21,was this some cruel sort of joke? My physical health was terrible, I could barely walk and had constant pains in my hands and wrists. I had to take 3 months sick off work while I tried methotrexate and dealt with obstinate rheumatologists at my local hospital.

    The reaction to methotrexate was terrible, and once I had changed rheumatologist to a better one in London I was able to start Entanercept injections alongside hydroxychloroquine and steroids (after a year of beaurocracy and having to take 3 month course of drugs to clear my system of small traces of tuberculosis). After 6 months I noticed an improvement which steadily grew more and more noticeable. The steroids made me constantly hungry and fat and I was glad to finally come off them sometime on late 2013.

    Moving on to 2014 to now, I feel a new person. Through the support of friends, family and my university I have never felt so good. I have almost completed my law degree and plan to study a postgraduate course at Oxford. Although I suffer with occasional pain, it is nowhere near as bad. I have never felt so good, and have been signed up to the gym since August last year. Through regular swimming classes, pilates and, believe it or not, weight training I am physically fit, muscular and strong. My arthritis is in remission and my blood tests show it. Mentally, I feel I could cope with anything this disease throws at me.

    Just wants to share, no matter how bad you are feeling, if you feel like giving up, never lose hope. There are modern treatments for this cruel disease and hope for everyone. I know some people may be affected worse than me, and I am by no means generalising that everyone would recover like me. I hope this post helps some people, and I am available for anyone who wants to talk or needs support in what is a difficult period for you.

    This is so inspiring to hear that medications have helped you! I've been doing pilates and other exercises but getting a lot worse. I'm in my 20s as well, so I think it's time to consider some medications and steroids, which I'm super afraid of
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