isolated with RA

I left a message here a year ago telling you of my new diagnosis for RA. I was really frightened of what was going to happen to me and on my first visit to the rheumy doc he did all the basics, felt body, xrays, blood tests etc and said he'd let me know his own results if different from my Gp but he seemed to be sure I had it. One year later and I am going for my second visit back to Monklands hospital to find out the results. Over the year I have gone down hill. I am in pain every day and extreme some days. I get cold and feel sick more often and I can't walk very far these days although I've been a good walker and have kept fit all my life.

I do everything to fight against this condition but sometimes it leaves this big toughie in tears feeling so frustrated that I can't lift stuff or open things or turn handles and shake like a junkie if I've been pushing myself too hard. Everywhere just seems to hurt but I think for now I can put up with the pain. For me the embarrassment of trying to lift my shopping on my own and trying not to let others see me shake or not being able to lift my feet or legs properly. The worst is collapsing outside and people walk by and look at you as if you're on something or drunk (wish I was) I wouldn't let their looks bother me so much then.

Maybe I should wear a T-shirt that says "I need helped not judged"

Sorry! thanks for listening to me moan I'm afraid I'm pretty isolated with no one to rant to.

14 Replies

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  • I'm sorry to read this but surely the RA team have not just ignored you in the past year? No medications etc. that is so not right and very suprising. Medications taken early do help and it might take a while but without anything you must be in agony.

  • Hi

    Sorry to hear your in such pain - physical and emotional.

    I totally agree with Medway lady's post; it doesn't seem appropriate that you seem to have been left to deal with this condition without medication and medical support?

    I would strongly suggest when next seeing the rheumatologist , this discussion be undertaken and you seek appropriate meds- otherwise you potentially risk significant damage.

    Have you daughter advise and treatment from your gp in the past year? My heart brakes at the thought of you just plodding on, alone and miserable for such a great length of time.

    Genuinely hope you get something sorted soon.

    Marie

  • That does seem like a very long time between appointments. I do hope for your sake that you are started on something soon which makes life a bit more bearable for you. We're always here if you need a rant or a moan. Take care.

  • So sorry to hear you are having such a tough time of it. I can't understand why you have been left so long between rhuemy appointments! Hopefully your GP has been prescribing you something for pain relief at least if not please do not continue to suffer in silence and insist your GP/rhuemy gets a treatment plan in place for you.

    This disease is hard enough to cope with without feeling that you are not being cared for. Please keep reading and posting here. There is great support on medical matters but more importantly the emotional support in talking to people that know what you are going through is invaluable. If you are feeling isolated in the real world this forum can really help you feel more 'normal'

    Sending hugs

    Sharon 🌸

  • Thank you all so much for your empathy and kindness.

  • Please keep a diary of how you are feeling so that you can accurately tell your medical team how it is affecting you. I've noticed that if I can list what I had and when in a list form, it makes the rheumatologist pay more attention.

  • Oh Dorothy, your post makes me feel so upset for you! A year to get results from tests? What's going on? What has your GP given you medication wise? Have you any family member who will go with you to see your consultant and GP? You need someone who will speak up for you!

    You have been a stalwart in the last year, but RA is a chronic disease and you deserve much better treatment to cope with it!

    I am in my first year with it and have been off work for three months as my mobility is so poor. I know exactly how you feel with the isolation at home. It drives me mad at times!

    Please speak up and tell anyone who will listen just what you're going through, don't hold back. You quite clearly are suffering and that is not acceptable!

    Sending a big gentle virtual hug, post anytime on this forum, we are here to support each other.

    Angie xxx

  • I am so sorry to hear that your RA is causing you greater issues. I was diagnosed 6 months ago and have noticed increased pain in more joints and constantly suffer with Tendonopathy. I know what you mean when you say RA sufferers should wear a t-shirt as no one seems to notice that you may need a little bit of help with daily tasks. I also feel isolated as there are few activities that I can do due to pain and fatigue. Such a shame that local authorities cannot afford to fund centres where we can share our experiences. x

  • It's outrageous you were left a year without help or treatment. I'm so sorry you are going through this. I'm newly diagnosed so I'm coming to terms with everything but I was dealt with very quickly . Let's hope you have some treatment soon to help you feel better

  • Feel free to rant as much as you like no one understands more than a fellow RA sufferer , X

  • Monklands airdrie?

  • That was not a rant. I am so very sorry this has been your experience. To finally know what is causing your pain and yet no one did anything to change it. You should be screaming . I am not sure what your system is like in U.K. , assuming that is where you are from! In BC we have physician's guide to treatment. This outlines protocols for the treatment of diseases. It is there to protect doctors from lawsuits but is an excellent tool when holding your doctor accountable. It also outlines minimum expectations of care. Clearly, they have missed the mark for you. Here a new diagnoses comes with urgent consult with Rheumatologist and direction for use of Methatrexate. The first two years are critical to achieving remission.

    I would strongly recommend urgent care clinic. Please do not continue to suffer in silence. This disease will not just go away. Please remember it is invisible, let people know you need assistance.

    I will no longer apologize for being ill. If people fail to acknowledge the fact I will no longer hesitate to clarify things for them. We did nothing to bring this on ourselves so why behave like it is. I cannot wait until they develop technology which can transmit pain signals. It could be a new super power. I have no doubt it would bring most people to their knees. Stay strong and get loud. Refuse to leave doctors office without a clearly defined treatment plan.

  • I'm sorry but I'm in the UK and the experiance of the OP is not the norm. Our GP"s refer to a consultant usually after doing blood tests and its not a long wait usually a few weeks but a GP will give pain relief in the interim period. Then the consultant examines and issues medication usually straight away. Then they see you again in my case after three months, then six monthly. We also have RA nurse helplines and I assure you this is a good service. I've no idea why the OP did not seek the results of tests but feel that its probably not down to a hard pressed NHS but something else like a misunderstanding.

  • Monklands is part of NHS lanarshire and at least at Wishaw hospital they have an early arthritis intervention clinic and a rheumatology helpline for taking sufferers. The consultant is not perfect but he is always over the details of the case. If that's the service u need maybe u could be referred there. Also there is the nras group in Glasgow once a month they have a Facebook page if u need help.

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