I was diagnosed in January after a trip to a GP before Christmas with a list of things including 'achy hands'. Pain has been really bad (it is in my hands, feet and wrists, also problems in an eye) and the side effects of the medication have not been great either.
I've just turned 50 and went from being a (relatively) fit, busy, lots of things to do sort of person to somebody who can no longer function effectively.
I'm really struggling to come to terms with the diagnosis and finding it difficult with some of the advice about how to deal with things. For example, if I hear that I should try and distract myself from the pain I will scream as the very things I used to do for pleasure and distraction are now impossible.
My rheumatologist is doing her best and is very proactive in trying to sort things out - but I am feeling really overwhelmed and undermined. The very person I thought I was, no longer seems to exist.
Stoli72
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Stoli72
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When you get your meds sorted out and after a time it takes the drugs get into your system, you should have something of a normal life darling. It is a minefield with all the drugs and no one drug suits someone else. Hugs.xxxxx
Can only say that it takes time. When you have meds that work, life will look a lot brighter. I always think that a diagnosis is overwhelming as it makes it all so real but on the other hand a diagnosis is to be welcomed as treatment follows. I am sure that everyone of us on here has felt like you and occasionally still do, but there is life after the diagnosis and you will find it. Hang on in there and be kind to yourself. What you are feeling is natural.
Hiya Stoli72, welcome. I wonder if you being diagnosed so efficiently has had more of an effect than most? From GP before Christmas to diagnosis in January is very prompt & it could be taken that you've not had much time to breathe. I was also diagnosed promptly (a bit over 2 weeks from seeing my GP to diagnosis) & whilst I was happy there was a reason for the problems I’d been having only a couple of months earlier it did give me a bit of a jolt at 48, though I quickly came to terms with it, just different mindset maybe.
Some do say they have a sort of grieving period, for your old self. I think I’m reading something similar in your post? The things you used to do for pleasure etc, now impossible. The intention, or hope is, once you're settled on a med we return to a different kind of normal, but one where you may be able to restart old pastimes, maybe in a slightly different way but it doesn't necessarily mean that they are gone forever. You're at the start of treatment, whichever DMARD it probably hasn't reached it's potential yet. Generally 12 weeks is the starting point, though subtle changes are often noticed around 6 weeks in. Your body is trying to accept a new med too, why side effects are most common when starting them. Many find the longer they're on a DMARD the less frequent or more tolerant they become of them. Obviously if after a while they're not getting better there are other ones for your Rheumy to prescribe. It's unfortunate that no one med treats all, that would be heaven!
Distracting yourself from pain, hmmm, not something I’m au fait with! Pain relief is what I'm prescribed for pain, that & an NSAID. I can lose myself in my garden though, so maybe I am subconsciously. Maybe being here will be helpful for you, a different sort of distraction? Anything you want others’ experience of ask away, no question too silly! We've all been where you are. Many initial users are like you & newly diagnosed, or longer term diagnosed & struggling. I don't want you to think everyone here is a typical RD patient, most do well.
I do hope you enjoy being here. If however you feel talking with someone would help there is the NRAS helpline 0800 298 7650 Mon-Fri from 9:30am to 4:30pm & also the NRAS website nras.org.uk for some light reading!
Sorry that you have to join us... but welcome, you are amongst people who understand, we have all been there and come out the other end of 😎 .
A diagnosis of RA is and can be overwhelming, but things will improve, a big dollop of patience is probably one of your best friends just now (initially difficult for me, as I was a busy active person pre RA).
But, you should not be in unbearable pain whilst finding the best medication for you, really that isn't acceptable.
Have you been offered an injection of long acting steroids to tide you over ? If not it might be worth asking about, and lastly have you been started on RA medication?
Keep in touch, post as often as you need there is almost always someone here to answer quickly. Please don't feel alone.
Bless you Stoli, it is quite overwhelming and I felt like you in the beginning… but once meds had been sorted and pain under control I find that things are not so bad 😜 of course there are still the flares to contend with it doing too much but generally my meds have it under control, I take methotrexate, hydroxychloroquine, sertraline and folic acid… they keep me plodding on and working full-time … I hope you get a happy medium soon, meanwhile sending big hugs, and welcome to the group 😘
Thank you all so much. The steroid injection and pain relief have not helped (or maybe they have?!) but I've long had issues with effective pain relief so I am not completely surprised that it is proving hard to find something that works and keeps me functional. Sadly patience is not one of my virtues, and I'm finding it frustrating that I can't do things that I used to be able to - but it sounds like patience is what I need.
Steroid injections don’t work for me. You can ask for a different steroid and give that a try. They all stopped working for me in the end but my magic pills are….magic!
Steroid injections don't work for me, only oral prednisolone, but the injection is the usual place to start. Your rheumatology department should be told the injection has not helped much so thsy can offer something else.
Once you get a Dmard that hits the spot…you will have less pain…..that is when you need the courage not to cling on to taking painkillers ……but as you say none have had much effect you probably wouldn’t do that any way!Let’s hope your rheumy finds the right meds for you very soon….then you can start to find the old you.
Oh sweetheart. She will come back: or a version very near to her will. We understand. You will go through the trial and error period of getting the right drugs for you. Don’t panic at lists of side effects; you will be monitored; but don’t suffer if they don’t suit you. Phone nurse helpline. I’d strongly recommend the NRAS helpline. I had many a rant and a bawl down the phone at your stage. Keep in touch. We are here to support. Xxx
I was diagnosed very quickly too at 33 and mentally its been a huge adjustment. I referred myself for CBT through my local IAPT service and it's been a lifeline - I highly recommend taking it up if it's available for you
Always remember you are awesome and you can get through these bad times.
It's as much mental as it is physical and there are better days on their way. Heat pads,hot water bottle or ice packs offer a some help. If the steroid injection didn't help maybe oral steroids ?
There's so much to get your head around just take things 1 day at a time and like others say be kind to yourself.
Don't rule out getting back to the things you love, just might take some time but you aren't alone here x
Hi Stoli! First of all sorry to hear this and reading your message makes me emotional… I’m 32 and a regular gym goer and had energy to go out but I have had to take a back seat with RA diagnosis.
At first it’s pretty tough! These methertrexate tablets are very strong and make you feel rather fatigue and sick - are you on this too? You can always get a steroid injection which will ease the pain …so ask your Rheumatology doctor if she can give this to you asap?
I feel your pain and everyone else whose hot this awful disease… my arm became disabled during lockdown and I couldn’t eat or do anything with my right arm … it got really bad and I had to have surgery…
Look after your mind and take baby steps … one day at a time and you will work out what works for you … - exercise is key and walking will you do good! Make it a routine morning and afternoon… take high dose of iron tablets and vitamin B12 every morning like I do and that will give you a lot of energy try smoothies - banana/kale/ginger /apple and eat lots of fresh fruit strawberries are good 😊 just keep researching food for RA!
Right now it’s trial and error but you’ve come to the right place! I feel the same way as you! Feeling like you lost part of yourself but keep fighting … It will get easier
Hi. I was in exactly the same place as you are. I was 51 when diagnosed. My life too changed overnight and it was a very difficult time. I want to give you some positivity and something to look forward to. I am not saying there won't be some hard times but in my experience, once you have got into the right medication regime for you, you can live a very good life with minimum flares and enjoy your life again. I am now 71 and my life is good and relatively pain free and all I am on now is methotrexate. Just follow the advice of your rheumatologist and let them know asap if things aren't working. Their aim is to get you to a place where you can enjoy your life. I wish you all the best
It is a grieving process. I am still working through it. As you start to feel better it will get easier but it is like a nightmare, don’t you think? Really hard because we have to deal with scary medications and sore bodies and all the rest of it. Super hard to keep spirits up when everything is so lousy.
I remember this period of time very well. You feel that this is it. This is how your life is going to be now. The constant pain in your wrists, an inability to hold knifes, pens, can’t get up a step. Staring at the four walls as that’s the best you can manage to do.
But, this will change. It really will. Finding the right meds is pretty brutal as it takes such a long time. But find the right combo you will. Most people do 😊
Have you tried a steroid course whilst this is happening? That may help. Compression gloves for your wrists can help alleviate some of your pain too. I lived in a pair from Dr Arthritis.
Life may never be exactly the same as you were used to. It may be slightly different and things may have to change, but I promise you, you will adapt and life will be good again. It may be cloudy right now but the sun is shining behind those clouds and it will shine again. 🌞🌞🌞🌝
I was diagnosed 3 years ago at age 56. No previous health issues, knocked me for six. Major early RA flare up in most of my joints (including my jaw) meant I could barely walk at all, showering was a huge task, brushing my hair hurt and in fact any movement was painful. 18 months later (just before lockdown) I went on a holiday of a lifetime touring around South America, including trekking through a rain forest. We walked up to 5 kilometres a day.
It took at least 12 months to find the right combination of drugs but I got back to the old me at last. I get tired more easily and I may get hurt for a day if I overdo things but I’ve been lucky not to have any major flares as yet. Have patience and determination 🥰
I think everybody felt like you do when they were first diagnosed…..I too was diagnosed in my 50’,s. I was very angry, because I had just retired …but eventually all those plans I had made ended up being adjusted & once my rheumy sorted out my meds things looked up. But that doesn’t happen overnight…..months at least. It can be a long haul…but you will get there.
My rheumatologist explained I had to accept my diagnosis & not kid myself
I would “be better soon”…because that would just waste time…so it’s best foot forward…..to find the drugs that suit you
If you are still working…..do make your employer aware of your diagnosis.
Like you I was diagnosed in my 50’s,& went from playing tennis everyday to being in so much pain I was unable to dress myself for days on end.
But that was 20+ years ago….No Biologic drugs then……& as you have already found - one drug doesn’t suit all… ….however one thing won’t change…..well meaning {they think} people will not stop giving advice…..they all know a miracle cure or a diet that “cures arthritis “….plus a lot more drivel…….Ignore them…taking DMards, (.disease modifying anti rheumatic drugs) really is the answer.
Who knows how I might have been without RA…but I can honestly tell you I have a good life…but the bad news is ….you have to be patient.
Hiya. Long slow road and you have to mentally get round this as well x. I struggle some days more than others but people on here keep me going x. Hang in there and if you’re not happy with the meds given or don’t think they’re working let rheumatology know x pace yourself and be patient with yourself x. Hahah I’m really not the best at that and have to remind myself all the time x
Yep patience is a tough one to get your head round I am 3 years in and still why why why. I have picked up you said pain relief an issue. I have had lots of issues with all drugs for RA and pain relief etc. Work with your RA team but also your GP. My GP is great works with m e and we have gone thro a ton of meds trying to find the right mix and so far co codomol has been my pain relief steroids o at the start but not as much now.Keep a diary of what is happening and bear in mind each RA drug takes maybe 13weeks to kick in. If something doe snot feel right start talking!
The forum does help and NRAS helpline and booklet for work and friends are great too!
Fingers x you find the right mix but come on here to rave or rant over things too!
It’s always a bit frightening at the start of any long term health problem , when you are wondering where it will lead .
I was 48 when RA started in my hands and feet , like a lot of other people . I’m 80 now . I am lucky to live near the Royal National Hospital for Rheumatic Diseases in Bath , which is one of the best hospitals for RA and associated diseases .
I remember reading as much as I could about RA , which frightened the life out of me , with all the bodily functions it could attack ( being a systemic disease ) and the sure and certain promise of ending up in a wheelchair . Of course that didn’t happen . Yet !
I started on Sulfasalazine which worked wonders for me . I did so well that at the end of 5 years of remission , I was told I could come off all medication . There was a warning that RA could return at any time and there was the possibility that they might not be able to get me back to the good state that I was in then . However , with the agreement of the consultant , I decided to give it a go .
I had 5 good years then on a long but tiring flight home from Singapore I realised that I was seizing up and RA had returned .
I spent some time on the ward at the RNHRD having pulse therapy ( steroid infusion ) in an attempt to “tamp down” the disease so that any new medication would have a chance . The infusions worked like magic and I was free of pain and grinding stiffness - for a few hours . I was put back on Sulfasalazine , then had hydroxychloroquine added and finally Methotrexate. I got back , more or less to the state I was in before my “drug free holiday” but not quite . However , I don’t regret the chance I took .
Over the years I’ve had a knee replacement and an elbow replacement plus a plate and nine screws in my ankle . Now my left hip is causing problems , so I guess a hip replacement isn’t too far in the future .
However , I was able to continue teaching in a large compressive until my retirement at sixty . My husband and I have travelled abroad every year until Covid put paid to it . I’ve been able to enjoy my grandchildren and I hope to live into my late 90s as my mother and aunts did .
I’m on sticks at the moment because of hip pain . But the imaginary “wheelchair” is gathering dust and I’m not ready for it yet .
Hi, I'm about the same age. When I was diagnosed 6 years ago I fell apart, as I remembered what my dad went through with RA. I hear what you are saying about being fit and healthy then going to someone that can hardly make it to the shop some days. I have RA in my joints and feet, so running that i used to do is limited because the next day I can't hardly move. I now know to do little bits when I can. When it comes to medication you just have to find out what works for you. There is loads of meds that your RA team can try you on, so I would say just keep trying until you find something that works. Good luck.
Greetings Stoli72, I feel your pain and frustration. You said the active words, no longer function effectively, overwhelmed and UNDERMINED. These ‘health’ professionals don’t get it. But they are all corporate bodies registered as businesses. We as a man or woman comes last!
I hope you get listened to. Don’t give up!
It’s tough. Ask your GP to refer you to IAPTS for some mental health support. Someone has just blown your life up. It will be hard going for a while. On here people understand. Take a day at a time, don’t admonish yourself, and celebrate those small achievements. Life can be harsh. Take care x
Thank you all for your support and kind words. You have given me a lot to think about - and to do. I need to ask for more help and support and to recognise that this will take time to get under control. I also need to be kind and patient with myself.
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try smoothies - banana/kale/ginger /apple and eat lots of fresh fruit strawberries are good 😊 just keep researching food for RA! 
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Newly diagnosed
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