I still don't know what to make of RA diagnosis

I just got diagnosed last week and I am in shock. I have only told one friend of mine and even she did not seem to understand. I am scared, I still have a few more blood tests remaining that the orthopaedic suggested.I don't know what to expect. Right now my left shoulder is still aching, but am on medication. Google is helpful and I have already learnt a lot.

11 Replies

  • Welcome Fell. This is a very friendly forum to ask/seek/ and give advice. Though we are not allowed to give medical advice, nor shall we recieve any. My advice to you is to take a deep breath and relax. We all have felt overwhelmed when we are first diagnosed. Please don't let Google scare you. Everyone's RA is different and there are a lot of good medication out there.

    Take care


  • Feli.

    Hi,hello and welcome.

    There are so many people on this site with excellent advise to pass on.

    Don't look at Google or other sites on the internet just yet, just wait until your diagnosis is confirmed .This could be any number of conditions so don't assume the worse.I have looked at the Internet for diagnosis before now and I have driven myself up the wall with worry,and usually for no reason.If I had taken heed of everything I had read I would have only had 2 weeks to live 5 years ago.I am still here !!!

    Wait till the results come through.In the meantime write down any questions that you may wish to ask .

    I am not denying it is a shock and you are scared, but wait until all your tests have been completed before you decide what to do.It may not be as bad as you think.

    Sit tight Feli and take care.



  • It's a big change & I'm not at all surprised you feel as you do, it's a lot to take in. Welcome though & I hope being here will help you along. The early days are a lot to contend with but hopefully your Rheumy willl be able to answer any concerns you have & us too, we'll do all we can experience wise, all you need do is ask. Treatments nowadays are very good & hopefully once you start your treatment you'll notice improvement, just give them a few weeks & you should start to notice things being a little easier. Do try to keep to reputable sites though, you may read some scary things which aren't necessarily shall we say helpful but just ask here & we'll help. The NRAS site nras.org.uk & Arthritis Research UK arthritisresearchuk.org are both UK sites full of helpful info regarding treatments, research & all things RD.

    I hope your bloods results go ok & try either warm or cold compresses on your shoulder. I react better to warmth & have a trusty old go-to in the form of an electric heat pad which works well on specific joints, particularly my neck & shoulders. Or the wheat bags which you pop in the microwave, they work too. I also use Pernaton gel, that takes the edge off nagging pain.

    Keep in touch, let us know how you're getting on & ask away if there's anything you think of you need help with. :)

  • Hi Feli

    An unfortunate welcome to you.

    You say orthopaedic - did they make a diagnosis? If so, based on what? (If you can remember). Are you seeing a rheumatologist at all?

    What medication are you on?

    As has been said, careful with Google, as it is all so new to you there will be an overload of information. A lot (most?) may not be relevant to you at all. You may well read some scarey stuff. Again, might not apply to you. If you read all of the possible complications and scenarios applicable to RA it will rightly frighten you. Most of us on here have had some form of inflammatory arthropathy for months / years / decades and we are still walking around and able to function happily. Sans wheelchair in most cases.

    One sad truth is that the people you know and love may not react how you would expect. You're too young is a common theme. Most people don't know what RA is. Those that do have next to no idea what it is like to live with. And more still will react in ways we don't expect because they feel out of control, unable to help. Disbelief is also a common theme. On the plus side you will find understanding and empathy in places you least expect it.

    As hard as it is, try to be calm and await the outcome of your tests. You have a long journey ahead of you, and this is a good place to start it.

    Kind regards


  • You could ring NRAS and ask for a talk to someone. They find someone like you that can listen to how you feel and understand.

    There is lots of very sensible advice on the NRAS site as well. Remember that nowadays most people are so well treated that they don't have the disabilities that used to occur with untreated or poorly treated RD.

  • As folk have said previously you need some time to take your diagnosis in. Beware of Dr Google with it's horror stories and instant cures from copper bracelets, diets and alternative treatments. You'll end up completely overwhelmed and confused. Stick to the reputable sites like NRAS and arthritis research just now. Are you in the UK as NRAS also have a a telephone helpline, which you might find helpful as you have a new diagnosis. Have you been referred to a Rheumatologist, these are the experts and the folk you need to see for a proper assessment, diagnosis, and treatment.

    The most important thing to remember is that treatment of RA has moved on in leaps and bounds over the last 20 years. Drug treatment focuses on minimising inflammation which reduces pain and prevents long term damage of joints, most folk are able to continue to live life fully as before. It takes time for rheumatologists to find the right combination of treatment for each individual.

    You'll find that you need to be patient with folk in the early days, friends and family who don't understand what you are going through, Drs and waiting for appointments, patience waiting for drugs to start working, patience with employers as you may need to take time off work.

    Also be kind and patient with yourself and your body just now too. Things will get better.

  • I am only recently diagnosed too. All of the last comments apply. This is the time to be gentle with yourself and don't panic take everything slowly . Listen to your body if it says stop then stop. Don't search the internet looking for answers Ask your GP. It has taken me a while to adjust to medication but at last I think I am getting there. This is one thing you can't rush believe me you will get there in the end. Take care and here's A Big HUG

  • Hi

    The one thing my RHeumy doctor told me was to keep in mind that this is a lifelong condition but don't be scared of it. As they give you diagnosis you will also get information of your condition. My doctor told me information is the key when I was diagnosed with RA, Sjordgens and lupus. Your fears and doubts can be discussed with your doctor as well as here. Also keep in mind it will take time to adjust to your condition 3 years on I am still learning to cope with it. You will have off days, tiredness and may have a hint of depression but whatever it is there is help and you are not alone in this fight. Light exercise is a pain esp when you are tired but very necessary your will tell you that.

    Take it is as a challenge. What is life we don't have a chance to fight and show off our strength😜. It is not only us that go thru this our family and friends have to also get used to this condition. I tend to see the positive side of this. If my husband or I want to avoid anything with friends or his office we use my condition as an excuse so silver lining😇.

    Be brave and and don't feel shame in asking for help it will and have to get better

    Best of luck and good health

  • It was a big shock to me as well when I was diagnosed and took me a while to come to terms with RA. I did think my life as I knew it was over and at the time could hardly walk or pick up a knife and fork. However as with most others I have met , once you get the correct medication you will be back to how you were before. I was diagnosed in 2009 and although it took a while to get the medication right I am playing football, golf and bowls and doing lots of DIY. All very much how I was before.

    So don't despair there is no reason why you can't lead a perfectly normal life with RA.

  • I'm scared too I was diagnosed 2014 and on methotrexate injections and humira once a week hang in there I have applied for disability

  • Hi Feli as everyone else says welcome to the site. When I was eventually diagnised like you i had so many emotions going on that made me scared. But over the past 2 years I have found most Rheumys are great and like all says write down your questions before you go. Also I have found this site really great, it is good to read every ones comments and to know you are not alone and these people are feeling very similar to you.

    It may be difficult to fined the right meds I was allergic to a lot but my Rheumy is working on it for me. Good luck you are not alone xxx

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