Hello everyone, I'm new here.
This morning I received a cheery email informing me that I have inflammatory arthritis and that I'm being referred for assessment for DMARDs.
After a bit of googling it seems they are possibly suggesting I have rheumatoid arthritis which is nice so I'll be looking for tips on living (and parenting) with this.
Hello! I was diagnosed with inflammatory arthritis in April. Glad to see you seem to have a good sense of humour - I'd sink without one! One thing I would suggest is contact NRAS, full of so much information, either downloads or posted leaflets, to help you get an understanding of what you have, ways meds can help, coping. Its a great start - and offers continuing support too.
And stay on this forum - the things you'll learn ! And ask anything,in time you will have a lot of questions, bound to be someone who can help.
Yes, I suspect a sense of humour is going to be vital! Thanks for the tips, I'll check out the info on the site.
I got a text with my diagnosis I sat in the car and got my head straight I had suspected it but email text not great way to know. This is a great source of info and support after bumpy year I am stable on medication and try and help myself as much has you can by diet and weight informing myself and taking the meds and keeping a sense of humour best of luck.
I wasn't even expecting a diagnosis, I'd assumed I'd need to go in to discuss the results of my last scan but I guess not. I had a text, telling me I had an email (how very NHS) just as I was walking into the office which wasn't ideal.
I'm looking into diet and exercise now as I've always trained but it's becoming harder to run and lift the weights I did.
Yes watch the joints I have always gone to the gym used to run walk miles I do walk but not so far and tire more easily more prone to injury I hurt my achilles this year ankles weak. As the saying goes listen to your body I still do walking weekends but can't do more than 5 or 6 miles and tell my friends that over 10 miles I cannot do.
Very similar yo my 'journey ' . It sounds as though it was the scan that did it. If there's inflammation in the synovium it is conclusive, even if there's nothing in the blood tests.. I made the mistake of thinking they would use scans to monitor disease but it doesn't work like that. But I did persist. Then I refused to take the meds...back on them now. Hopefully will help with Very bad feet and ankles. Will be having shockwave treatment in new year. Can't function without steroids.
So sorry you’ve been diagnosed with RA. As others have said NRAS is probably the only site to get brilliant, unbiased, accurate info on every aspect of this unpredictable and, let’s face it, sometimes painful and misery-making disease.
Diet and exercise are important but you may just need to revise your expectations about how much exercise you’ll be able to do while your medications are titrated for your specific set of circumstances. Until you’re properly diagnosed and stabilised your joints are under much stress with inflammation so take it easy and pace yourself ( a concept totally alien to me over the course of 35 years……..🙄) so you’re not overtired as your body attempts to fight this new invader. Eat as healthily as you can as putting on weight just overloads your joints but there’s no need to diet as such.
Hope your rheumatologist is accessible and you’re able to ask all the questions when you see them - it’s useful to have someone with you as having a diagnosis for a life-changing disease isn’t easy to get your head round. The good news these days is that the drugs which are prescribed now are far different to the concoctions I had to swallow so long ago and as my consultant recently said, these days they tend to be there to tweak medication and they certainly don’t see the deformities that so many of us old-timers have had to endure.
Keep your sense of humour to the fore, come on here for ranting, questioning, bleating and some pretty good info and help from those who totally get it! All the very best for the future.
Thanks - sports and exercise have always been a big part of my life so it's going to take a bit of processing to come to terms with no being able to do what I want. Although I've known for a while as I've been feeling increasingly exhausted after runs or training sessions and my ankles/toes are constantly hurting now.
Welcome to the forum. Lots of advice/info to be found here.
It wasn't a surprise to me when I was diagnosed as I'd known something wasn't right for a while. More of a relief to have answers, really, especially after having been patronised and fobbed off previously.
I've managed pretty well with it for 17 years. Not sure if that's because I was fit and active in my 30s - cycled everywhere, lots of sports etc. Less so in my 40s when I was diagnosed but I've been a dog walker for 20 years so am sure that's helped. It's only this year that it seems to have really gone on a surge, just as I'm winding down towards retirement.
And diet - some people are very particular. I'm not and it's never made any difference.
In fact, I've just stuffed down two chocolate eclairs. 😁
All the best with your journey.
Oh whitedog thanks for your honesty. I have a large bar of chocolate in the fridge for emergencies... Its amazing how many emergencies i seem to have!Generally my diet is actually good, but some days you just have to enjoy that type of temptation. Good on you.
Hi so sorry to hear, I hope you find this lovely group as wonderful and helpful as I have , welcome it a lovely place to be xxx
ah, the personal touch. I was informed by letter in the post, which I thought was bad until my dad was informed he had cancer in a letter that arrived on a Saturday so he wins.
If I had one piece of advice at this stage it would be to remember there are other options if one treatment doesn’t work out.
i would say do your reseach but dont over read, it can be depressing, take from it what you need.. its going to be along and hard journey.. bestrong. you can try carnivore diet which is just protien,
welcome to this club but it’s not one you want with free membership.
Like you I have been diagnosed with inflammatory arthritis. It changed from RA to psoriatic arthritis to axial spondilarthritis then eventually got label of inflammatory arthritis.( only took 10 years 🙄)Doesn’t make a difference the treatment is the same.
Like you very fit lots of weight training and cardio. Determined I could beat this but for me the exercise got harder, shorter ( covid lockdown made a big difference ) . I was one of the unlucky ones and it took 10 years to find a drug that worked or didn’t have side effects.
My tips are pace yourself ( 😂🤣laughing here never managed it ) rest don’t push yourself it’s the worst thing you can do. Let people know how you are take help where you can , don’t be a martyr. If a drug has side effects then contact your clinic no point in adding more suffering.its taken 10 years for me to find the right one . No googling !
Patience is a must the drugs take a while to get and work.🤣😂🤣patience let me know if you manage it . If you’re not being heard shout loud . Care has deteriorated for us as it’s not one of the glamorous specialties doctors wish to have . Far too complex, add nhs shortages it makes it tough. This is where this site comes into its own. Help and advise is immediate.
Good luck . If you need any tips on knicker flicking I’m your woman .
I'm always sad to hear that another person has this horrible condition. I've had RA for around 27 years (although my consultant thinks I've probably had it a lot longer). Lots of useful info on NRAS website and great support on this site. I hope you get your meds sorted soon. Take care and always protect your joints! x
Welcome aboard this supportive forum.
I managed once I got my head round my diagnosis to do a bit of research on the NHS site . Following this was able to draw up a list of questions which the specialist nurse kindly answered. Make sure you obtain the number for the advice line it's invaluable for obtaining help for any thing you experience.
Two things from me listen to your body , rest is fine be kind to yourself.
It's can be one step forward , two back sometimes with this condition, especially initially.
All the best
Thanks for all the kind replies and advice.
I've just tried to tell me wife but I think she's under the impression I have a mild case of osteoarthritis so I may have a bit of work to do there!
I've also just tried ringing the service that sent me the letter to see if they could explain a bit more but obviously there's no way of actually getting in contact with them so I'll await my referral.
Yes family doesn't always understand I couldn't walk up the road during a flare at one point and my daughter couldn't understand this she does now as she follows Adam thomas on Instagram but she's young so not for all. My partner sometimes gets it if I am struggling walking tired irritable or in pain. He once said to me you can sometimes walk miles but can't walk to another bus stop I did laugh
are you saying inflammatory arthritis is the same as RA, and can I ask what tests determined your diagnosis, , and what does DMARDS mean please?
I could be very wrong as I'm new to this but from what I could gather, RA is a form of inflammatory arthritis of which there are a few types. I checked out the other types and they don't really fit my symptoms, RA was discussed as a possibility when I first started seeing the doctor. I had blood tests, physical exams, X-rays, and ultrasounds plus a load of questions.
Ok my understandind was RA destroys joints, deforms fingers, joints swell , and inflammatory as indicated is inflammation of tissue tendons etc around joints, seems to be very difficult to diagnose, thank you
DMARDs- Disease-modifying Anti-rheumatic Drugs such as methotrexate. Rheumatoid factor was one test that confirmed mine. Best of luck!
Welcome to the forum CreakyAnkles. Yes, there will be lots to learn a d NRAS is a very valuable resource. There are others like Versus Arthritis , Arthritis Care and Arthritis Action etc. Ampersand has an app called MyArthritis with some very good interactive material to enjoy. Keep in touch, someone will always have gone through similar as you and have a tip.
Hi, welcome to the club that nobody wants to join! I have inflammatory arthritis but not RA because I don't have the rheumatoid factor in my blood. Symptoms and treatment the same. In January before it happened I was very fit and active but I haven't done much exercise this year yet. Still trying to get the right meds. One lesson I quickly learnt was advocating for myself. Don't wait for the NHS, keep pushing and ringing etc! And use this forum, it's great!
Hi, I’ve had Ankylosing Spondylitis and RA for 42 years. It’s an up and down journey but I found understanding the diseases, advocating for oneself (as someone mentioned ) and working at keeping a positive mindset helps. If feet and toes are painful an expert assessment by an experienced podiatrist can be helpful. I’ve worn custom made insoles for over 20 years. Not for everyone but for me it has made a big difference.
NRAS have an exercise and sport group which I found useful since diagnosed 1 year ago. I am told that 80% of people manage to get remission with the right medication, it just needs a bit of time. I find that using the search function on this site gives lots of info in previous conversations.
I'll check out the sports group, thanks!
By way of an update - I can't get hold of the doctor or anyone at the clinic who referred me, nor my GP. I managed to get through to the hospital outpatient booking team to ask how long I can expect to wait. They couldn't really tell me but could say I'd been put through as an urgent referral, I'm not sure if this is a good or bad thing.
I was surprised to find urgent can be quite a long time. There was a website where it was possible to enter the type of referral and find out how long the wait time might be. I wasn;t glad to see how long it was but I did find it helpful to know what to expect.
I'd say that it's a good thing as even an "urgent" referral can take quite a while; mine was back in 2019 (when the NHS was far less stretched) and it still took 3 months, even with my GP constantly pushing. You may need to do some yourself or even consider an initial private appointment with an NHS consultant if that it practical.
Thanks for the heads up, I'll keep pushing although I'm not sure why it's an urgent referral as nobody has actually told me anything. I've been through the system for ADHD so well used to waiting!
Got my urgent appointment - 23rd May! Oh well, at least I know.
That's awful! Might be worth you contacting the clinic to say that you'd be available for any cancellation appointments which come up. You really don't want to delay starting treatment if possible 😉
hello😊
Welcome but sorry you are here too. RA is no fun. The pain and fatigue changed my life in all sorts of ways. In particular the fatigue took me aback.
I now have a treatment that is fantastically helpful. However the thing that helped me the most was to have regular counselling. The impact of a chronic illness was huge and accepting it is quite the journey. I am still on it after 5 years.
Accepting that my body is not able to follow up with what I want to do is extremely difficult and made me feel very angry, sorrowful and sometimes despairing
The counselling helped me to keep working full time in a job that I loved and was extremely demanding (politics). It also made me appreciate that the illness not only took away but gave. By this I mean that I have become a person with more empathy and compassion. It enables me to appreciate things that I took for granted for years (good level of energy, being pain free). It was a hard thing for me to get to!
Counselling is not for everyone but it has been a life saver for me.
It can be an interesting journey with much learning along the way. Not a smooth road though!
Thanks for the welcome. Yeah, the pain is one thing but the fatigue has really come on over the last year or so
I'm glad the treatment is working for you. I think I'm in the same boat in getting frustrated I can't do what I want my body to do anymore and am all for counseling so will take that up when it's available. I'm also in a demanding career as a lawyer, and have been worried I won't be able to keep up with it for much longer given the fatigue but hopefully the meds will work out for me, even if I have to wait 6 months for my appointment.
I went private for my first appointment because of the wait. The rheumatologist then brought me straight into her nhs clinic. It was expensive and I was privileged to be able to afford it. It was just one appointment and costed around a couple hundred pounds. It was 5 years ago though.
My Journey: It all began subtly during my college years—symptoms that seemed trivial at the time but would soon change my life forever. Fatigue weighed heavily on me, along with a persistent low back pain that I tried to ignore. I also noticed an odd swelling near my sternum, where my first rib meets the bone. I consulted several doctors, but they found nothing conclusive. Despite running tests, no diagnosis was made. With no answers, I convinced myself it was nothing serious. Over time, even the fatigue seemed to fade.
But the lower back pain never went away.
As time passed, the stiffness became worse. I started waking up in the night, unable to move, convinced that my old mattress was to blame. I replaced it, hoping for relief, but nothing changed. My mornings were filled with stiffness and pain. As a university student staying in a hostel, my daily life turned into a constant battle—juggling the demands of my studies with the growing discomfort that plagued my body.
The breaking point came on the last day of my final exams. My back and hips were in so much pain that I couldn’t sit through the exam. I had no choice but to leave early, feeling defeated. Back home, I visited the Haripur DHQ hospital, many private doctors, and even the CMH in Abbottabad, yet nothing improved. I even tried physiotherapy, but the relief was fleeting at best.
I lost count of how many times I had blood tests done, only to hear the same frustrating response: nothing is wrong. But I knew something was deeply wrong. The pain intensified, spreading throughout my body. My right arm became stuck in place, unable to move, making even the simplest tasks impossible. I developed a fever, and the pain seemed to worsen every day.
Soon, the pain reached my jaw, making it so stiff I could barely open my mouth to eat. Headaches were constant, and I felt trapped inside a body that seemed to be shutting down. Then my knees began to swell—so badly that walking became a challenge. Desperate for answers, I consulted another doctor who found fluid in my knees and performed surgery to drain it. But the pain lingered, still a mystery to all the doctors I saw.
At this stage, I was bedridden. I couldn’t move without using a stick and could barely take a few steps without extreme effort. The pain and disability had taken over my life.
That was when my younger brother’s friend discussed my condition with his cousin, a doctor. He invited me to his home to review my reports and examine my joints. After assessing me, he suggested I visit the KRL hospital in Islamabad, where he worked. There, a team of doctors took a closer look at my case. They ordered new tests, including X-rays of my hip bones, an ESR test, and the crucial HLA-B27 blood test.
The results finally provided some clarity. The HLA-B27 test came back positive, and my ESR levels were alarmingly high. I was referred to a rheumatologist, who carefully examined my condition and confirmed the diagnosis of ankylosing spondylitis—a painful, chronic disease that affects the joints, especially in the spine and hips. They explained that while the disease wouldn’t kill me, it was permanent and there was no cure. I would have to manage the pain and symptoms for the rest of my life. Even they didn’t know what triggered it.
I started treatment immediately, taking anti-inflammatory drugs, painkillers and steroids to relieve the pain. Slowly, I began to regain my mobility. After weeks of treatment, I was finally able to walk without a stick. However, the pain persisted, never fully leaving me.
Eventually, I found a job and started working again, which became an essential part of my journey. Having work to focus on helped distract me from the ongoing pain. But even after nearly ten years, the pain hasn’t gone away. It has left a permanent mark on my posture and has changed the way I walk.
Despite treatment, I am still living with this disease. The pain continues to affect my body daily. Even though I can walk without assistance now, the pain is a constant companion, reminding me that ankylosing spondylitis is something I will always have to endure.
Despite everything, I continue to push forward, living each day with determination and hope.
New & waiting for consultant diagnosis. 
New to diagnosis, not so new to the pain.
Finally a diagnosis!
Change of diagnosis decision 
Diagnosis
