Hi everyone. I'm 35 (birthday 16th June) and am waiting to see a specialist for an ultra sound on my hands and feet. They think it's RA. In honesty, I'm scared. All I seem to see is horror stories from people diagnosed with it. That they have to stop working, their personalities change etc etc. Is this a true perspective on this disease?
Thank you
Hi Jenna , well welcome here but in the words of an old comedy series " don't panic!"
First let's wait till you get diagnosed as there are lots of reasons for your symptoms but secondly I guess you've read people who are on websites having a rough time . Others are there at home and got treated and were fine so didnt need to have a lot of interventions .
My own perspective is that we are lucky these days to get a lot of help support and therapy. I'm now " back to normal " after finding a great drug combination with my rheumatology team .
So first get diagnosed properly, then they will give you treatment. Patience is a virtue in this game as it takes time to get you on the correct treatment as one drug helps one but maybe not another person, so its trial and error.
Second start up keeping letters, taking photos of any sore, red joints and write down when your pain is worst so you can give them some evidence at your next appointment.
Thirdly read nras.org.uk for help and advice, bnras are amazing and have a fabulous helpline .
Lastly from me, I'm sure others will say hi too, dont worry this will sort!!!
Sending internet support ! Xxx A x
Spot on allanah this is what I would have said ... you beat me to it
No that is not a true perspective of R.A.
It is a rotten disease Jenna..but a lot of the time it is what you make if it.
When first diagnosed everyone will have a story to tell you how they’ve got it too,,,,,,& drone on to tell you a long boring story about osteo arthritis,Just shut your ears,
I do hope you aren’t diagnosed...but if you are .....listen to your rheumatologist & you will probably be one of the lucky ones who get settled on the right meds pretty soon. Don’t read all the rubbish written about giving up work & personality changes.
I was diagnosed 20+ years ago & the drugs we are now prescribed have advanced tremendously.....so start off being optimistic, don’t listen or read about those who moan & groan about every little niggle...just because they were sick on drug A does not mean you will be too.
So listen to your doctors & with luck this time next year you will be well settled on a regime.
But let’s not get ahead of ourselves ....let’s just hope you don’t have RA!
I was diagnosed about a year ago but when my gp first referred me to rheumatology she gave me some great advice - don't Google too much and if you do, don't read anything more than 5 years old as treatments have come on leaps and bounds. I stuck to "official" medical websites like NHS and NRAS and it really helped.
You'll find lots of support and advice here but remember that the vast majority of members are too busy getting on with their lives to post so even here, you'll mostly find posts from people who are struggling atm which can give you a over-negative impression of the disease.
I'm doing well although my meds aren't quite right yet so are still being tweaked. I'm still working and my personality is the same - for good or bad! 🙄😂
We’re all different I was terrified when I was first diagnosed Iir took me a long time to accept this horrible disease but I did I will never be like I was but I can honestly say I am loads better than I was . You learn to addapt things differently and I am always positive anyway when I think of other people children who have worse things going on in their life so keep your chin up it do s help on here their a good crowd don’t get down we’re all the same big hug x
I was diagnosed forty years ago. Treatments have improved enormously since then. Despite this I worked until I was 65, exercised regularly and enjoyably and had a good social life. I know that I have been lucky in not having an aggressive form of the disease, but that is also likely with modern treatments.
Remember that most people who post on sites are the ones with problems. The ones without problems are just getting on with their lives.
I have aggressive disease...but with the modern treatments it’s pretty well behaved so I’m 95% normal. And although I stay in this site, Ikm actually just getting on with my life. My box of painkillers has dust on it.
There's not much I can add to the advice already given. I just wanted to say I hope you don't have Rheumatoid but, if you have, welcome to a forum filled with lovely, helpful and informed people happy to help
Hiya Jenna & welcome. You've done the one thing we suggest those yet undiagnosed don't do, yet it's so difficult not to, you've googled. It's no different to any other condition, there are lots of scary stories out there on less than reputable sites but the good news is you've found us, those with the condition who can give you realistic & honest first hand experiences. Not sure about changes in personality, not something I’ve come across & mine certainly hasn't altered.
Right, so you're not yet diagnosed so don't overthink things just yet, there's still the hope you don't have RD. That said it's not the end of everything you know if you do. With the meds available to Rheumatologists nowadays there are so few who don't do well, certainly compared with those diagnosed 20 years ago. Obviously places such as forums will give a false impression as they tend to be used by those not doing so well, which happens at times, it's the nature the disease, we have flares intermittently. That said there are those who choose to be here on this forum, it's as much a connection with others, supporting & keeping up to date with fellow RD'ers. I've been diagnosed 12 years, was very fortunate to be diagnosed early so had few erosions & no damaged joints & pretty well controlled most of that time so needed no replacements. Not everyone is as fortunate, it can in some take a while to find the med/s that suit them best though they are in the minority.
Allanah has given you the link to NRAS site, do have a read through, maybe with your partner or those closest to you, especially if you are diagnosed, as they can also understand just what's going on. I would also recommend someone close accompanies you to your diagnostic appointment as there's quite a lot to take in & understand, always difficult when it's you trying to recall what was discussed, two heads & all that. You can come back here if you're uncertain about anything, we may be able to help & you're welcome to ask for advice or experiences.
Prior to being diagnosed, whilst waiting for my diagnostic appointment, my GP prescribed pain relief & an anti inflammatory. She suggested I stopped both a few days before the appointment so I’d present myself unmedicated. I don't know if your GP has prescribed pain relief or anti inflammatory but maybe he/she suggested the same? If so just to reassure you it's worth the few days pain for your Rheumy to make an accurate diagnosis & form a treatment plan. Also, you'll have a full examination so remember to wear clothing which is easy to take off & on & best underwear too!
Keep us updated & if there's anything you feel you need reassurance of prior to your appointment just ask, there's no question too silly. 😊
I was diagnosed 33 years ago, brought up 5 healthy children who now have grown up kids of their own. Worked part time with special needs students. Cycled and walked everywhere. . Loved knitting and writing poetry (hence the name). RD never stopped me from living a full life. As the others have said, IF you do have it, listen to your Consultant and keep away from Dr Google. sending you best wishes and hope you will be a regular on here if you need to be.
💖
Hi, i was diagnosed just before i was 50. I too was scared and the meds i was given were trial and error for a while. But eventually we got it right. If you do have RA i'm sure that the right meds will come around for you too especially as there are far more treatments now than when i was diagnosed. Yes it's difficult having RA but it's not the end of the world. Take each day as it comes. I now have fibromyalgia too so that makes it more difficult. My husband told me when i was diagnosed to do one little thing each day just for me. So maybe you could do something similar. Don't worry about it til you know all the facts. Best wishes x
Wow thanks everyone. It really means a lot and you have all made me feel very welcome and very reassured 😀 all the advice you've given I will take on board and I shall let you know how I get on. Fingers crossed my appointment is soon. Much love and thanks again xx
Hi Jenna, a belated welcome from me too. I really hope they get to the bottom of what is going on for you. I find the not knowing so hard to deal with.
I was diagnosed with RA back in July 2019, on meds now and just tweaking meds to see what works best for me.
I have continued to work though although it has been so difficult at times but my employers have been so supportive and continue to be.
I’m still me and I am determined that my RA will not define me. I have good days and bad days and know that in time with the right meds life will be a little more settled.
I am learning, very slowly what my limits are for the day, ever changing and take each day as it comes. I have a long way to go with this and really do need to learn some more patience too. 🤣.
However I am still me, smiling, positive person with a wicked sense of humour most of the time.
Hang in there lovely and we are all go support you in every way we can.
Great advice from everyone else as always. Coming across this group has been a real blessing for me.
Keep in touch. x
I wasn’t even aware of this perception?! I’m a 36 yo single dad, diagnosed with a different type of inflammatory arthritis back in Jan that has all the same symptoms, just a different root cause. I’d been having flares for well over a decade that despite going back and forth were pretty much ignored because of my age and that my bloods are all completely negative (which is normal for my type of arthritis). It was only due to an ultrasound on a swollen finger late last year that I finally, finally got diagnosed. If anything, my personality is a lot better than it was. Why? Because although my meds aren’t quite straight yet, I’m not in pain 24/7, and the pain and stiffness I do have is nowhere near as severe and debilitating as it was prior to diagnosis. I’ve started working out again recently and even went for a run this week, when I hadn’t been able to do anything in months. I don’t work because my 12 yo has complex needs and needs a full-time carer, but I’d be far, far better placed physically to get a job now than prior to diagnosis!
The other thing to consider is that whilst it sucks to join the club, if it turns out to be arthritis, doing so now is to your real advantage: had I been diagnosed early doors, the only joints significantly effected probably would have been my toes, maybe one knee, and my lower back. Instead, because it was left untreated for years, it effects my toes, both knees, one hip, both hands, both wrists, one elbow, my spine and my neck. Early diagnosis and effective treatment can halt this disease in its tracks for many people. As others have said, many people posting here do so when they’re having a rough time and things aren’t well controlled, or because they’re newbies seeking advice (like you and I).
Don’t google too much, don’t overthink things until you have a definite answer, and know that even if it is arthritis, this is the start of a new chapter, not the end of the book.
New to this forum, hello
TODAY IS AN OFF DAY
"Normal"....?!
