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newly diagnosed with reactive arthritis

sweetprincesssweetprincess Posts: 12
I am just 17 and newly diagnosed with reactive arthritis.My whole life has changed.Its difficult to fight depression which disturbs me a lot.I really need some help .I want to know about pain management.For now I am taking NSAIDS.


  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi, I just wanted to reply till the helpline get back to you. It is a total shock to be diagnosed with arthritis especially when so young. It is natural to be struggling with depression when you are in pain and have had a total life change.

    Painkillers are best taken reguarly, if the nsaids do not take the edge off enough, speak to your gp or rheumy again. There are loads of pain meds about, so no need to suffer. You can also ask for referral to a pain clinic to help you or physio.

    Talk to your gp about the depression as well, they can offer you counselling and support as well as antidepressants.

    Also try other parts of the forum, as peeps here are very supportive.

    Take care
  • tillytoptillytop Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello and welcome to the forum.

    Like Suzy, I am a forum member, not a member of the helpline team. The helpline will be open again tomorrow and I am sure someone will get back to you then.

    I am sorry to read of your diagnosis and your struggle with pain and depression. Hopefully by joining this forum you will at least feel less alone with it because you will be able to talk to others who understand what you are going through. The Living with Arthritis (LWA) forum is a good place to post because most people look there regularly and there is also the Young Persons Forum, which might be useful for you.

    Thinking of you.

    Love Tilly xxx
  • helpline_teamhelpline_team Posts: 2,066
    edited 30. Nov -1, 00:00
    Hi Princess,

    Thanks for stopping by chat to Helplines. Sorry to hear about your diagnosis and that your pain is not good right now. You've mentioned being on anti-inflammatories, but not whether you've been referred to rheumatology? If you are having a particularly tough time then it would be worth having a bit of rheumatology support (but a GP can monitor your inflammatory levels with regular blood tests if not).

    In the short term you may need to consider getting a quick GP appointment, or at least discuss permitted painkillers to add to the anti-inflammatories with a pharmacist. Taking your full daily amount of paracetamol is likely to be suggested and there are lots of options from there too.

    If you are feeling low then it's really important to do as you are doing and flagging this up. You are welcome to give us a ring on our freephone too.

    If you'd like us to send you an information pack just email your full name and postal address to [email protected] and say it's about reactive arthritis.

    I hope we can help further.

  • sweetprincesssweetprincess Posts: 12
    edited 30. Nov -1, 00:00
    Thanks all of you who replied.You people are really nice.I do visit my doctor regularly.I do even take painkillers sometimes.I just wanted to meet more people with reactive arthritis on this forum and wanted to know how are they managing their life with it.This is the biggest challenge i am facing now.
  • sweetprincesssweetprincess Posts: 12
    edited 30. Nov -1, 00:00
    You people should also inform me about the time when you get online I want to chat with you people.
  • helpline_teamhelpline_team Posts: 2,066
    edited 30. Nov -1, 00:00
    Hi sweetprincess

    If you are looking to make contact with other people in a similar position to you, you may be better off posting on the Living with arthritis forum or the young peoples forum as more people who do not usually post on the helplines forum will see your posting.

    Best wishes

  • TheOnlyKeyTheOnlyKey Posts: 24
    edited 15. Jun 2011, 11:39
    Hi sweetprincess

    I also have reactive arthritis, I was diagnoses with it approx 4 years ago when I was 19. I was a very sporty person and went to the gym 3 times a week. With in a few days I was unable to walk on my right foot due to excess inflammation. It took my G.P along with many visits to the hospital, blood tests, ultra-sound, x-ray M.R.I and 8 months later an injection of steroids to get it under control. I went through the stage you are now of feeling depressed. I would get home from work on crutches on a Friday afternoon, And not go down stairs in my house until Monday morning because it was so painful to move unless I absolutely had too. I got to the point were I expected not to be able to talk again.

    After the injection, with in a few weeks it was as if nothing was ever wrong with me.. Apart from I was 9 stone 7 and I was 13 stone before hand. I lost all of my muscle that I built for years due to not exercising and eating the minimum.

    Ever since then I have had a few flair-ups but nothing that Diclofenac from my G.P could not control then it would go again. I am now going through a bad stage again (This is why I am on the forums) were my feet, lower back, left collarbone and neck. Its very painful to just sit up in bed. I had blood tests today to count the inflammation or something like that. My GP said there are different drugs that can be prescribed.

    The things I think will help a lot:
    Talk about it with other people that have it as you are on this forum
    Find out all you can about it. A good website is http://www.arthritisresearchuk.org
    Scientists are always carrying out research and looking for new treatments
    Find out what you can from your GP. For example my GP has said to me that reactive arthritis causes inflammation and is painful but working that joint does not cause damage. So at the moment during the flair-up I try my best to push though it. It hurts like hell to take my t-shirt off. But I wont let it stop me. You will also read everywhere that you should keep your affected joints active. Swimming is what most recommend because there is no weight on your joints whilst working them.
    Also know there are many different treatments and drugs for reactive arthritis and it may just be a case of finding the correct one for you. The best thing I can say is that, as hard as it is, try to keep your head up and not let it get the better of you. Make the most out of life. Stay in control.

    All the best
    If you would like to talk or any other info PM me
    . I would be more then happy to help.
  • TheOnlyKeyTheOnlyKey Posts: 24
    edited 30. Nov -1, 00:00
    Note to self: Read comment back before posting it. Sorry for spelling and grammar.
  • sweetprincesssweetprincess Posts: 12
    edited 30. Nov -1, 00:00
    Hi The Onlykey,
    Thanks a lot for replying.I would like to remain in contact with you.Its been 4 months i am diagnosed with reactive arthritis.I feel as if its becoming more chronic with the passage of time.Now my doctor has put me on Disease Modifying drugs.Can you please help me in knowing what treatment options exist here.I want to have much information about this.
    Now I have truly accepted that I have got this disease.I have no other option but to fight it.I can understand your feelings too.Its not so easy to live with such a thing.Your normal life activites get disturbed very badly.But Life is a continuous challenge and I know I have to face this challenge.When I meet people like you on forum its gives me a relieving feeling that I ma not alone. :smile::smile: The OnlyKey always keep smiling.My best wishes for you.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I think the helpline was right, you will 'meet' more people if you re-post on the LWA (living with arthritis) part of this forum, more people look in on there and there are quite a few with your type of arthritis. Many of us are on DMARDs etc as they are used to control a few versions of this disease. The same goes for you too, TOK. Come and say hello to us over there! I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • TheOnlyKeyTheOnlyKey Posts: 24
    edited 30. Nov -1, 00:00
    Glad that I was able to help. I hope that the website I linked was of use too. The nurse at my clinic used a web site http://www.webmentorlibrary.com to access information on reactive arthritis but this web site is not available for public use as far I as know.

    Anyway I have the section on Reactive arthritis printed off in front of me that I obtained from the nurse, I believe this is what General practitioners refer to as well. about five A4 pages worth.

    You asked what the treatments were for reactive arthritis. Copying in short from the list I have here:

    If the trigger is an infection of the urethra, a short course of antibiotics, Gut infections have often cleared on their own by the time the reactive arthritis develops.

    (Clearing the triggering does not usually alter the course of the arthritis, Once triggered, it will usually run its course well after any infection has gone.

    Anti-inflammatory painkillers easy the pain and stiffness, there are many different brands and your doctor will usually prescribe one. There are no ‘best buy’ and some people find suits them better then others. So if one does not suit at first, another may be fine.
    Some joins become very swollen, the fluid may be removed by a doctor with a needle and syringe which can easy the pain
    An injection of steroids medicine directly into the joint, Rest, But as soon as you can it is important to get the joint exercising and moving again. Sometimes steroid tablets if its very bad.
    Physiotherapy help keeps joints moving, and build muscle around them if you are not using them.
    Disease-modifying medicine. Reduce damage done to joints, there are several for example suphasalazine and methotrexate. They don’t have immediate effect on pain or inflammation but they may help to prevent long term joint damage if symptoms persist.

    I have shorted that information somewhat when copying it. I would be happy to Scan it and e-mail the lot to you if you think it would help. I am sorry to hear about your condition and wish you all the best.

    I the first web site I linked there was information on a study carried out in Florida university about people with reactive arthritis that were put on a long course of antibiotics and another group that were on the placebo. Something like 1/3 of people on the antibiotics arthritis cleared completely and the others had significant reductions in pain and symptoms. Were as the placebo has no change of course.

    Needs to be studied in more detail but it just gives you hope that in the future as medicines improve and our understanding of things increase there may be something in the future that can help to fight or even cure our condition.

    Hi DreamDaisy and thanks for the invite. i will have a look when i get a chance. Hope that i have helped shine some light sweetprincess, wishing you the best and hope to hear from you again,
  • sweetprincesssweetprincess Posts: 12
    edited 30. Nov -1, 00:00
    Thanks again for replying.The Onlykey can you carry out your normal day activities easily and which job do you have.Did arthritis stopped you from doing what you wanted to do.
  • TheOnlyKeyTheOnlyKey Posts: 24
    edited 30. Nov -1, 00:00
    I was a technician for Audi when I got it and for the 8 months I was on crutches I was unable to because I was not allowed into the workshop for health and safety reasons. But after the period I got back into it. I have since left there, and now have just been accepted as a FireFighter. Since this original flair up I have been able to live my life quite well. Few weeks here and their of pain but nothing I can remember. Now I am going through pain in my left shoulder, Lower back, Both feet, toes etc. And at times it can be hard to get my jumper off or sit up in bed when I wake up. Makes me worry a lot about if I am going to be able to do this new Job in the Future? And if I should not bother wasting their time. But I want it so bad that I will do everything I can. The GP is helpful and I should have my blood test results back next week. I am hoping that a different type of Anti-inflammatory will help and this flair up will pass and allow to get back to normal. So It does effect me from time to time. And some times worse then others. But I have only had it 4 years so I don’t know how it will change other time. GP says it should get better but we will see. Everyone is different. It could be a completely different story for you. I hope that you can get back to normal. Wish you all the best.
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