Hi everyone, I was diagnosed with RA just over a week ago and have my appointment with the specialist nurse in a week's time to discuss my treatment plan.I've only had symptoms since middle of May this year, specifically my right shoulder seized up - that eased after about four days and since then I've had pretty constant swelling and pain/stiffness in both wrists and feet, both thumbs and index fingers - started off one joint then another but now several joints at the same time. The pain is moving around constantly at the moment despite a steroid injection when I saw the consultant, although the swelling is now minimal.
I'm just hoping for some reassurance that when my meds start to work, the pain will go away! I'm pretty sure I'll be on methotrexate and hydroxychloroquine (aspirin reaction). I'm finding it fairly difficult to deal with this and be positive which is unusual for me - I'm definitely a bloody-minded 'this isn't going to beat me' kind of girl! Instead I'm finding myself close to tears most of the time.
Sorry for the moan, just needed to have an anonymous minute of self pity!😂
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Rubygirl08
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Shock is always something to be taken seriously but to be honest RA isn’t life threatening as is a few other serious medical diseases nor does it mean you’ll have a lifetime of pain and stiffness. RA is a serious medical disease, of course it is, but with so many medications available these days it’s very treatable. I don’t know what medications you’ll be offered but MTX is first line and can work well. Some get side effects which may or may not go away either way it’s really trial and see for all of them. It is always better to travel with hope on any medical journey and don’t believe everything on Dr Google. Remember that if 10% get side effects then 90 % don’t. The worst bit is before diagnosis and if I were you I’d keep a diary of each day so you can hopefully see how things improve or if not it will enable you to inform your medical team going forward. Be patient too as unlike antibiotics RA meds often take 3 months to work. Good luck and be optimistic because life may have taken an unexpected turn but it’s very rare for anyone not to respond to all medications or get side effects to all although it has to be said it does happen. I’d urge you to contact NRAS or look up their website which has a lot of information.
Thank you for the good advice, I will start a diary. I am usually quite an optimistic person - just had a little wobble earlier, a bit frustrated with not being able to operate as my old 'normal' self.
I’ve had RA for years and worked normally until retirement. It is in my case just take the pills, do the jab and forget it. It’s not always been easy though it’s not changed my life at all. I consider myself lucky that remission means I’m able to live well. I do have CKD but that is an altogether difficult disease and is debilitating.
Welcome to the club no one wants to join. It can be a very lonely place when you are first diagnosed but honestly things will get better. You are definitely amongst friends as we are all on the same boat, just some with a little more experience. It can take time to find the right meds so try and hang in there. Any questions, just ask away. No question is too small and there will always be someone to answer.
Moan and rant away, we've all been where you are and it sucks 😥 Your rheumy team are there to help, as is your GP, so don't be scared or ringing them no matter how small the problem is, that's what they're there for. Take care and I send a gentle hug🤗
Hi Bootoo, I feel better having voiced my frustrations! Thanks for the advice to use my rheumy team and GP., (I'm normally a bit reluctant to ask for help)Hugs back to you 🤗
I felt exactly the same as you when I was first diagnosed, in pain and unable to even dress myself properly some days. I remember saying to my daughter- I just want to feel normal again. She very wisely said to me- mum this is the new normal for now and it probably won’t always be like this when you get some medication.
Things did improve slowly , please be aware that any medication takes time to get into your system and to work.
Be kind to yourself, sometimes a good cry can help, try to distract yourself will a boxset on tv , a book etc and also try to get some fresh air each day even if it’s a little walk in the garden. Explain to family and friends how you are feeling and accept help that is offered .
Above all keep in touch with your rheumatologist team and NRAS can help with a chat or leaflets, hope you soon begin to feel better.
Hi Freddiefan, my daughters have said the same to me, I'm not very good at asking for or accepting help though!Mind you binge watching box sets does have an appeal 😅. I'm missing being able to walk my dogs at the moment (hubby is doing that for me) although I am joining them when my feet are feeling not so ouchy. Thankfully they cover the miles that I'm not able to, fingers crossed I can get back to it soon. X
Hi Ruby, oh bless you, sorry you just have been diagnosed with RA, believe me when I say we have all felt like you do now and I remember doing a very similar post when I first diagnosed 11 years ago as it felt a very scary and lonely place to be, unfortunately RA is a very misunderstood condition still.
Don't lose hope as there is hope and once your medication starts to work you can lead a pretty normal life and if any medication doesn't work etc, again don't lose hope as there are many others and medications to control it are getting better and better all the time,
I have quite a severe form of RA, but I still work with adjustments and plan to continue doing so and I try to stay as active as possible
Reach out when you need to you will get get lots of support and advice in here.
Thank you for the hopeful reply, I'm office based for work and already am finding different says of doing things. Like I said I'm normally quite positive about stuff, but the thought of having this pain long term just got to me. My nana had RA and all I can remember was the pain she was constantly in, but that was 45 years ago and treatments have come a long way since then. 🙂
I was in your position in 2019. I started on Methotrexate and Hydroxychloroquin and Sulphasalzine was added later and I'm doing well. Had some ups and downs on the way but currently no pain (or need for pain meds) apart from a twingy wrist and some morning stiffness. I have less energy than I used to have (although that was coming on before diagnosis and I suspect that it was a symptom) and have to pace myself but count myself lucky to have found "my" medication regime fairly quickly. I certainly had my low moments in the beginning and it's fine to allow yourself to feel like that, feeling guilty helps no-one! Try not to research too much apart from well-respected sources like NRAS and Versus Arthritis as there are far too many scare-mongers out there. I've always been a bit of a "Pollyanna" and assume the best and I think that a positive attitude (albeit tempered with a bit of realism) is a really good thing when dealing with these sort of challenges. There are always people here to advise, support, laugh and cry with you so keep posting! 😉
Thank you Boxerlady. It's good to hear that you found your regime early, my fingers are crossed for the next few months. I'm struggling a bit to pace myself especially when my grandchildren are here, I find myself doing too much walking about the house with them 🥰 they're too young to understand why I now can't play with them like I could a couple of months ago which is hard. But I beat breast cancer, so I can certainly sort this out.Thank you for the positive words x
Yes think you summed it up well I am a year in take same meds have had ups and downs but resumed walking holidays this year yes you have to listen to your body and take care of it and not use dr Google or listen to anyone who knows nothing about the condition
Welcome Ruby, I can’t add much to the great replies you’ve had so far other than to reiterate to keep talking to us for support when you need it. Hopefully you’ll find ‘your med’ quickly 🤗
Hi KittyJ, Thank you for responding, I'm back to being me now 😅 (not sure whether that's good or not!) I know I'm very early in my journey but the same goes for you all, if I can help with an 'ear', I'm here.
Welcome to the Club nobody wants to join……but it really isn’t all doom and gloom.I was around your age when I was diagnosed 27 years ago and here I am living just as well as most of my friends without RA.I kept travelling all over the world…until that wretched Covid put the mockers on that for a while. .
I have lived a good life in those last 27 years including taking Mtx which I tolerated well ….I don’t know if Dr Google was around then…,but if it was, I’m very glad I didn’t read it.
The hardest move is accepting you have really got RA,…..& understanding it’s a Marathon not a Sprint. Some drugs can take many months to work…but don’t give up too soon…you might think your rheumy is being unkind not changing your drugs as soon as you ask…but your rheumy team do know what they are doing…….well most of the time they do…..so if you meet any obstacles just keep going…..
Hope your first two DMards suit you & that they work quickly….do let us know how you are getting on!
AgedCrone, your words have given me such a smile, Thank you! I most certainly won't be referring to Dr Google, but I do hope to keep travelling.I will let you know what I start with and how I get on with them x
Where you are is not a walk in the park…...but early days ….this time in a few months….you might see some light! But take the long term view then you won’t be disappointed.
Sorry to hear you're dealing with RA, the initial stage around diagnosis is often the hardest because symptoms are at their worst and the uncertainty about it all is greatest. It will get better, I promise you - symptoms, pain, feelings of disorientation or not feeling like yourself - just give it a bit of time. It's a lot to take in.
It is good that you've seen a decent response to the steroid injection, and that you have a follow-up appointment to discuss RA medications next week. The sooner you can get started with those, the better, because they will hopefully get your symptoms under control longer-term, including the pain they cause.
I'm so glad you found this forum and decided to reach out, because it's a brilliant source of support. There is also the NRAS helpline which is open during the week: nras.org.uk/helpline/#:~:te.... And the Wren Project, who offer a one-to-one supportive listening service to people in the early stages of living with an autoimmune condition: wrenproject.org
Please remember that moans, venting, frustrations and anything else are all very welcome here - we understand what it's like albeit all in our own way, and are here to support each other. Wishing you well and please stay in touch if you want to.
Hi virtualreality, Thank you for the links, I will look into them. I'm really glad I found this forum too, I feel much better about the future already. Best wishes to you too x
Hi Rubygirl, I was diagnosed with RA in March '23.
I was in awful pain, as well as swelling of several joints. The consultant I saw was really informative and helpful and the rheumatology team were excellent too. I have recently been transferred to GP care but can call rheumy team if I need advice. I still have blood tests every couple of months.
I was initially given prednisone (steroid) which helped swelling and pain. I started on hydroxychloroquine too and gradually built up intake of sulfasalazine as directed. After 3 months or so my joints were no longer swollen and most days I was free of pain. I didn't find the disease depressing but I did find the medication worrying. I feel some relief in that it is monitored through blood tests.
The most frustrating thing is that very few people understand what rheumatoid disease actually is so thank goodness for this forum and it's support. I don't post a lot but I do read the posts. There are a lot of knowledgeable people on here. The NRAS website and helpline are available too.
I wish you all the best and hope that you find the medication you are given works well for you and you can enjoy life again.
Thank you Annscottie, it's good to hear that your meds are working for you and you're in a good place. I'm more positive about the treatments after reading this, Thank you! X
Yes best wishes I had all same symptoms currently good touch wood on the same meds you will find your way and this is a great support site the other one is OK but it's other types of arthritis too so this the one for RA
Shock, denial,future. It's something we have had in common when first diagnosed. I didn't know anything about it and that was a very long time ago. What we also have in common is support from this group. By opening up you've started your journey hate the J word but it's part of the process. Write down your questions for the Nurse about medication and how you are feeling. Let us know how you get on and remember we are here too to support you. Take care
Some really good advice here. The only thing I can add is when researching on this site (and other similar ones) remember the vast majority of people who post here are the ones looking for support because things are not going so well. The vast majority of people whose RA is well controlled with few or no side effects from the medication are busy getting on with their life.
I know exactly what you're saying 😊 as I only posted because I was feeling low. I'm hopeful of joining those people and thank you for responding - everyone has been really kind.
Hi, I'm a newbie too, well since around Feb this year and yes I've felt sad and frustrated too, in fact I'm feeling a bit crap currently because the oral steroids have worn off and the Methotrexate hasn't kicked in yet. Have developed 'normal person envy' when people walk past me in town while I hobble. I was so active before. But actually there is no normal person and everyone keeps reassuring me that the meds will work, so fingers crossed for us all. I wish we could all meet up for a beer and have a good laugh/cry. Good luck Ruby and keep us posted!
Mtx will work. You will control the RA rather that it control you. These are the hardest days you’re facing. My rheumy said to me 29 years ago, that you grieve for the person you were before RA even if you’re an upbeat personality. It’s hard too if you were very athletic and sporty like myself, but I became a different person who pursued studying again and something I loved I’d always wanted to continue. Sometimes there are meetings/patient groups organised by rheumatology departments for newly diagnosed RA people. I also did some phone calls at my rheumy nurse’s request to assist newly diagnosed RA patients as she said I was always very positive and upbeat. You’ll lick this into shape and keep it under control. Both you and Ruby. 🩷🩷
It is a lot to take in, especially when you are in pain and feeling debilitated. We all go through a grieving process when given life altering news, it’s natural and normal.
The hardest thing is accepting the altered state.
Yes, it’s a chronic condition but…. We are fortunate that medication is now able to control the disease. It may take a bit of trial and error to find the medication(s) that work for you, but you will.
When you can, learn as much as you can about RA and the medication available, and always read the leaflets, some say don’t read the side effects but I always do. For me information gives me choices. Also, I think being informed when discussing your treatment plan/disease is advisable, no one knows your body and how it reacts better than you.
Being “bloody minded” will stand you in good stead, when you have come to terms with the diagnosis.
The first and best step is posting on here, you’re amongst friends and people who completely understand.
I was diagnosed about 6 years ago, I was in my late 50’s, my son was at Uni and I was going through a difficult divorce, so all I needed was RA on top of that - but here I am now, a few ups and downs along the way, in my early 60’s, still working, moved to a lovely new house, life is on the up. I had a few blips and tweaking of medications, but it’s not all been doom and gloom - I’ve found Methotrexate and Sulfasalazine works for me at the present time. I do still have aches mainly in my hips if I walk too much.
But I’m presently at a Pilgrimage in France, I’ve done tons of walking and although I am tired and a bit aching, I could never have imagined I’d be doing this when I was first diagnosed.
I’m sorry you’re missing walking your dogs, I used to take mine out, even if it was just for a half an hour with my walking stick (when I was really bad), he’s sadly passed away now 😢🐶 but he was almost like a service dog, he knew when I was unwell, he used to stand resolutely by my bed in the morning so I could hang onto him to help me get up…..dogs are the absolute best at understanding when you are poorly.
Take care, be kind to yourself, when you are poorly rest, don’t feel bad about it, the meds will work eventually and you’ll be just grand.
I'm so glad you're in a good place healthwise and your life is a happy one now! I'm really looking forward to getting back out with my dogs, hopefully not too far in the future. I've managed a couple of shorter walks with them when my hubby takes them out, which is quite funny as they're like 'oh mum's here - we don't have to listen to him today'😂.Enjoy the rest of your Pilgrimage, and I hope you don't ache too much x
hello, there’s good advice here especially about keeping a diary and asking for help. I was diagnosed with Adult Onset Stills Disease in 1979 aged 17 which manifests as RA in my case. It changed the course of my life completely but I managed a decent job until the pandemic, drive, had two sons and even used to go to gym classes like body pump at one point. I’m now 62 and view my condition as an old friend, well kind of, it’s there and it’s not going away. Your post talks about the pain which is different for us all. To cope I use a 1-10 system and upon waking assess each area of pain and allocate it a number on the scale. Most days my small joints get a 2 which is manageable but of course 2 x wrists, knees and elbows soon mounts up but at 2 still manageable. When a hip of shoulder joins in at a 3-4 the entire load becomes too much…. You can get my drift. So odd as this may seem this scale helps me deal with it. Remember people are generally happy to help and I ask daily for help with bottles, cans, doors, petrol pumps etc to be lifted, opened and have never been refused. Keep smiling.
Stills, you've had a painful life! My nana used to joke that she was never lonely after my grandad passed away, as she always had 'arthur'. She had RA before treatments improved. Thank you for your advice on scoring, that's quite a good idea. And I need to get used to asking for help, that is completely alien to me but I'll get there!Take care, and absolutely keep smiling x
I think unfortunately any chronic illness makes you feel low at times regardless how strong you are, It’s another thing that just stops you doing what you used to do automatically. Any diagnosis can be life changing and we do tend to muddle on and get on with it, it’s our nature. You will feel better once meditation helps and you won’t feel as much pain. You’ll get through this.
I was diagnosed last November and at that point I was seriously at the point of if this is the level of pain I am going to have to live with then I actually don't want to live 😞 I have never in my life been depressed or suicidal but the pain and disability I was having at that point was like nothing I knew existed. Like you, I couldn't dress myself, open a bottle, drive, walk my dog etc. I was using a wheelchair whenever I went out. However, luckily for me, methotrexate worked (give it 3 months, it doesn't work immediately) and last week I did my fist yoga class in more than a year, 2 months ago I couldnt even kneel or squat down! So now, the odd ouchy moment first thing in a morning when i get up and I have to pace myself a bit if doing gardening or housework etc. But other than that I'm doing great 😀 Fingers crossed you get there soon and keep coming here for support if it feels like you'll never get ther 🥰
Oh wow! That's so encouraging Cat-E, I'm nowhere near a wheelchair but the constant pain and feeling useless has been hard to deal with. Thank you for the reassurance and I'm so glad you're back to doing the things you love. Take care x
Six years ago at the age of 56 I woke up with an extremely painful shoulder. Doc said I had a frozen shoulder and prescribed some pain killers. It went in about 10 days but then a couple of weeks later my other shoulder started to become more and more sore. My Doc said I had a torn bicep !! Then the fingers on both hands began to really swell at which point a different Doc said something is not right and we should run some blood tests. A consultant eventually decided I had RA by which point every joint in my body was inflamed and sore ..even my jaw hurt and chewing food was agony.
There was no history of RA in my family, I knew nothing about the condition and I was scared.
This was the start of an 18 month journey to relieve the pain and discomfort and then find the right combination of drugs to start getting control over it. For me to begin with that was methotrexate, hydroxychloroquin and naproxen with an occasional steroid injection. But I had to initially take 6 months off work to reach a point where I wasn’t in constant pain and could visualise a future for myself. I do understand the place where you are at the moment and it will improve but maybe not as quickly as you might like to begin with.
I began writing a journal during the early days, and when I read back now I’m surprised how bleak my mood was at times …though maybe not surprising given how much pain I was in. Although it wasn’t a conscious decision, my journal writing suddenly stopped 3 years ago at a point where it began to get very repetitive because I was no longer inflamed or in pain.
At times I can still get suddenly tired, but I’ve no discernible pain or inflammation in any of my joints. I’ve had no flare ups in 3 years … Ive now retired from work and when my joints creak I’m not sure if it’s RA or just because I’m 62 but life is extremely normal and good and I began reducing my medication over the last 12 months.
You will get there but just need to hold on to that belief when it might seem unlikely at times. 🥰
Wow! Mine started with a frozen shoulder in the middle of May, my husband got me to A&E as it came from nowhere. Four days later the pain had gone and I had full movement. Since then the pain had moved from joint to joint with impressive swelling at times! 😂 I'm so glad you're back to normal, I'm feeling much more positive. Thank you! X
That’s not unusual. RA was described to me as being quite symmetrical so it will often be in both shoulders, knees etc or move from one quickly to the other.
I am so sorry Rubygirl08 that you are going through it but it is ok to feel self pity. It is okay to be upset and constantly in tears. I had exactly the same few months ago and I still have those feelings sometimes. It will get better. I am on hydroxy every other day and doing pretty strict diet. I work full time and function normally. There are days when feeling fatigued but majority of my days are fine. You can get there and all those feelings you don't like about yourself, will fade away but don't be afraid to feel sorry for yourself. For me it was like I was mourning my state and the change. I was also blaming myself that I could have done something earlier to prevent it but it was simply not possible to know. I do use some help and doing some therapy sessions so I can understand and make peace with what is happening to me. Reach out if you need anything, we are here if you need to talk.
Hi Green_frog, Thank you for this, I was feeling a bit of a moaning Minnie when I posted yesterday. I am fairly early stages (I think) with the disease, and try to put the painful elbow and shoulder pain down to overdoing it.I will make myself ask for help from my family when I need it in future instead of saying 'I'm fine'.
Hello! I completely understand your feelings. You have to work through them and adjust yourself a bit but the treatment options these days are vast. You need to be kind and patient with yourself whilst you find your footing.
I am 41. I was diagnosed in 2022 and before that and the first 18 months post-diagnosis were tough, because it wasn’t controlled and I wasn’t really sure what was going on.
You have to advocate for yourself and tell your Rheumy team when you need more help & support. Also, be honest when you’re feeling exhausted.
Re additional tips: I have also adjusted my diet so loads more fruit and veg, with antioxidant stuff like berries etc. I am also trying to make sure I do more exercise. Also, for the bad days, I always have painkillers in my bag and ice cubes in the freezer!
But now, there are some days when I don’t even think about my RA.
Hi Martha, Thank you so much for that sage advice, I'm sorry you got this so young!I really wasn't expecting to feel so tired but it makes sense, and I had been wondering about diet, so will have a good explore about what might work for me. I always have paracetamol with me, which I'm taking regularly at the moment.
I've already found that everyone is really supportive, I'm blown away by the response!
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Best wishes to you.
Hi Ruby, I was Diagnosed at 38 and my immediate reacton was the same "this is not EVER going to .... beat me!!" At that point I was in constant pain and very scared. That atttitude has mostly kept me going since - I'm now 60. It took almost a year to get on a biological, but rest assured, thare was some improvement before that. My first Biological, Etanercept, was a miracle - pain and stiffness dramatically reduced in a matter of days. There have been numerous ups and down, side effects, meds changes, and other issues since, but I've kept positive, got over them all, and that has been a key thing. I still work full time, do a Zumba class, go out walking, and all the things I love. Groups like this are a great support and there may be a local group that meet near you. Read and get your family and friends to read as much info as possible and try to have someone with you at your appointment for support and to remember details. There will be alot to take in. You will have down days, but you are very much not alone and the range of drugs and support is increasing year on year. Things will get better, you will live your life and you will enjoy it to the full. Take care and keep the positivity going. Michele
welcome to a brilliant supportive site we all learn to cope better after reading others comments and sharing them lifts your hopes.
Everyday is different with RA and you will learn how to manage the challenges it brings, once you start some medication you will start to see more positive things.
I have learnt to focus on the positive things I can do and not the things I can’t after being diagnosed nearly three years ago, my life changed drastically after being a mental health nurse for nearly 40 years.
Hobbies and having Pets are great soothers.
My grandchildren have adapted to how I’ve changed and I just do different things with them now, keep positive x 🥰
We all need a Moan, Rubygirl108 I was diagnosed with RA 14 years ago, It, 's an awful disease with lots of ups and downs, I cannot tell you that the pain ever goes away totally, or all the other conditions RA brings with it, but I can tell you that when you're on the right treatment plan the pain eases considerably and you can live a new normal life. My Rheumatology team are brilliant I hope yours are too, If something isn't working for you there are other medications. One word of warning the nausea that methotrexate causes is horrid but it does ease off. Please don't think your life is over it's just different. Take care xx
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