New diagnosis, feeling lost

GalwayGirl · 3. Jan 2025, 22:05

Hello!

I was diagnosed with Rheumatoid Arthritis a few weeks ago and I thought I was coping with it but the last couple of days I'm feeling quite overwhelmed with it all. I've just started on methotrexate and I'm hoping to get some relief from it but I know that could be a while away. I'm 31 and work in the performing arts and am quite worried about my career at the moment. My knees are the main thing affected (although some of my other joints are joining the party too!), and I'm getting very frustrated with not being able to walk much. I don't really know if I have a question, I think I just needed to say a lot of that out loud (or quietly typed). Any advice is much appreciated,

Sinead x

frogmorton · 4. Jan 2025, 14:14

Lovely to meet you @GalwayGirl

sorry though to hear about your recent diagnosis.

This is a very scary time for you, but just ti reassured you so many of us have trodden the same path ahead of you so we can help if there's anything at all.

I vividly remember me when this first kicked off for me I was terrified, angry, very sad, up and down. Relieved to sort of have an explanation, but all in all very mixed up.

I felt like I had ruined everything for my children and husband refusing to plan anything in case I was unable to manage it.

I became an arthritis bore! Sorry friends and family😳

Luckily I found this place and bored these guys instead. Over time the meds settled things with the odd tweak here and there and I find myself 17 years later all is pretty well ok😊

Please do ask we'll help if we can and take care

Toni x

olivia_b · 4. Jan 2025, 14:34

Hello @GalwayGirl And welcome to the Community. We are a friendly and supportive group and I hope that will be your experience too.

I'm sorry to hear about your diagnosis, I am very aware of what a scary and unknown time this can be.

When I was diagnosed nearly 2 years ago I was a competitive cheerleader and I was extremely worried about my athletic career after hearing the news. Though it has only been a short amount of time, I am still cheerleading and am even training more frequently per week and I am on more teams than I was when I was diagnosed.

My best advice is to trust the process and listen to your body. At first, I tried to ignore the fact I had arthritis and live as if I didn't have it which made things so much more difficult especially regarding physical activities. When you have those days where you can't walk as much, that's okay, listen to your body and give it what it needs. Whether that's rest, ice/heat, or pain relief. Just take care of yourself and you will find the days when that pays off.

Don't get me wrong, it's a long journey with many ups and downs, but keep in touch with everyone on here as we all have little pieces of advice and stories to help you along.

I hope this has helped in some way or another.

Olivia x

Archangel · 27. Jan 2025, 16:03

Hi, just been diagnosed with Rheumatoid Arthritis and find it very overwhelming and I thank you for this post.

MaryL44 · 27. Jan 2025, 16:44

Hi @Archangel Welcome to the community. I was diagnosed with RA about 6 months ago and, like you, found it overwhelming. The Versus Arthritis Community was the best thing I found. You will find that everyone is very friendly and supportive and a lot of us are further on in our journey than you (see @frogmorton s post above) .

My personal take on this is knowledge is power. I have researched RA, pain management and diet and feel better now that I know more. Just be sure you are looking at reputable sites (Versus Arthritis obviously 😉) and try not to disappear down rabbit holes! However, I do know we are all different and not everyone has the same way of dealing with difficult stuff and I'm sure our community will give you their views.

In the meantime our website is full of very useful information. Have a look at this:

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

And search recent posts. Just use the magnifying glass top right of screen and search for rheumatoid arthritis. You'll find lots of posts.

Now that you're here keep coming back and let us know how you are getting on.

Best wishes

Mary

frogmorton · 28. Jan 2025, 11:39

@Archangel nice to meet you.

I am so sorry to hear you have needed to join us. If it helps just remember all of us have trodden the path you are now on and we can help and support you and we will just ask us anything.

We've also all felt the same as you at the beginning. I thought my life was over I was honestly not worth knowing for a good while.

If you feel you want to tell us more then go ahead.

I have read these pages and wished they had been written when this first kicked off for me

https://versusarthritis.org/about-arthritis/newly-diagnosed/

Take care sending you some ((()))

Toni x

Lucky71A · 30. Jan 2025, 09:32

did find this condition daunting. Was always going out every day and lots of walking till covid came about. Stoppped going on buses and my everyday gadabouts in case I caught it. I think that’s what this stems from I was so active before,. Trying to do some things now but painful and have a stick to help. Found this site and to know there are others out there with this condion helps a lot.

Lucky71A · 30. Jan 2025, 10:16

after I had x rays on my knees doctor just said it was arthritis presume it’s osteoporosis

PJoanne · 30. Jan 2025, 11:16

Hello @Lucky71A

Do you mean osteoarthritis ? Osteoporosis is where the bones are weakened and more likey to break. Osteoarthritis is what most commonly referred to as 'arthritis'. Did your GP offer any treatment or advice?

Here's some information on osteoarthitis of the knee for you:

https://versusarthritis.org/about-arthritis/conditions/osteoarthritis-of-the-knee/

Here's a link to the NHS website about osteoporosis:

https://www.nhs.uk/conditions/osteoporosis/#:~:text=Osteoporosis%20is%20a%20health%20condition,broken%20spinal%20bones%20(vertebrae)

best Joanne

caz02021966 · 14. Feb 2025, 08:46

Hi I read all the comments can I ask why mine has gone so wrong.im on my 13th year with ra and I carnt move.the pain everywhere is unbelievable. I'm on morphine tramadol ibuprofen for the pain but it doesn't touch it.i carnt do anything my joints are bone to bone so my doc tells me.am I the worst side of ra.is anyone else like me.please help as I'm so miserable ty

Poppyjane · 14. Feb 2025, 10:51

Hello @caz02021966 welcome to the online community

We are glad you found us and have been able to read the comments of other members whose experiences reflect some of your own. Sorry to hear that your medication is not touching your pain and that this is affecting your mobility and emotional wellbeing. Have you spoken to your rheumatology team recently? Usually the rheumatology nurse offers a helpline number for you to leave a message and then they get back to you with advice and support. Or is this something your GP could help you with by making another referral to the rheumatology and/ or orthopaedic consultant.?

Meanwhile I am sending some links about pain management and exercise which many of us find helpful

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https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

https://www.versusarthritis.org/news/2020/june/how-to-stay-active-when-you-have-arthritis/

If you click on the highlighted "self management resources" halfway down the stay active article you will find a display of different parts of the body that you can then click on. Start slowly and carefully , be gentle with yourself and gradually do a little more each day. Many of us have tried this slow gradual approach at home and have posted to say it does start to make a difference after a while.

We hope that this first post to the community has helped you feel included in a group that is here to offer friendship and support and made you feel less isolated. Do let us know how you get on.

Best wishes

Poppyjane

Tilly51 · 14. Feb 2025, 13:34

Hi All I've just been diagnosed with osteoarthritis in the knee (only 1 been xrayed) but I think I probably have in my other knee and hip too. I am also ostopenic so are waiting for an appointment for a bone density scan. All very daunting and scary for the future