Newly diagnosed

Hello, i was diagnosed on jan 12th.

I have been reading posts over the past few weeks and i feel for every one of you. I have received virtually no information from my rheumatologist about my condition or what i can expect. I was given a leaflet about sulphasalazine and told i need to go back and have blood tests every two weeks after taking the meds. I have not yet had an appointment with a nurse although this is booked for april. I have not yet started the medication prescribed to me, one because i am quite worried about side effects and i have trips coming up for work requiring me to travel abroad I am also in my head wanting a few more weeks of not having to take tablets before i embark on this journey of having to take tablets every day for a long period of time.

Do i have to take these for the rest of my life ? I was told at least the next 2 years. Does this mean i could come off them completely or will i have to change drugs? I think i am probably a little bit in denial about the whole thing. I am rebelling and dont want to take them, started to go out and run and then realised i cant very well at all! I have read LOTS of information on various websites about the condition, but feel very alone and cant seem to find anyone to talk to who can relate to what i am experiencing. Having told my two bosses at work, one said i should forget western medicine and look to chinese medicine and then forwarded me details of vitamins, omega 3 and various other vitamins to take. The other went to the other extreme and said that i will end up in chronic pain and should start to look for medicinal cannabis ! My partner thinks that i need to get second opinions to see if i really have it and to see what can be done to treat it. Of course i know they all mean well, but clearly dont really understand. My mum, after asking about all my symptoms now thinks she has it and has been less than sympathetic.

I have no friends, and no one to talk to. I take the passenger lift at work because walking up the stairs several times a day hurts my knees on some days and makes them swell up. I then have comments albeit jokily that im lazy or people laugh that i take the lift. I do understand that people dont know i have it or understand the condition but it is frustrating, and lonely and i then get embarrassed. At the moment i would not say that i am in chronic pain. I feel a bit of a fraud when i hear how people are really struggling with pain and have had to give up work. I am not at this stage. I hobble around in the morning for half an hour as my ankles hurt a bit and my knees hurt a bit and swell up. I have wrist, elbow pain, so when lifting a pan of water, or now even a cup of tea i start to feel the twinge in my elbows and wrists. Its not chronic pain though, just bit by bit, twinges, swelling and aches are creeping in across more and more of my joints. There have been days where i ache a lot and other days when i dont. have a lot of neck tightness and pain and severe migraines and headaches which i have had all my life. Now i am worried my neck could be arthritic. i am often tired. I am worried that i am going to end up in severe pain and lose mobility. I dont know what is down to arthritis and what isnt. I dont know if this is going to get worse or could stay how it is. Could anyone tell me what the role of the nurse is? I feel a little bit like the walls are closing in around me and that the more people i speak to the more i realise how on my own i am. I am 43. If anyone can shed any light as to what i can expect i would be most grateful

Thanks

16 Replies

oldestnewest
  • Nicky,

    I can fully understand your situation and can relate to what you said. I was diagnosed in Jun 2014 and started the treatment in Jul 2014. I was in remission since Aug 2016. The golden period to put you into remission is the first 6 months therefore do not hesitate and do proceed with the treatment.

    I am very sorry to say that RA is no cure, remission is what we are looking toward so that our life can be back to normal. Yes, we need to take the poisonous medicines for a long time and may be even for life. However, do not worry about the side effects. They may or may not happen to us and the rheumy will monitor our condition via our blood works.

    I did went for the traditional Chinese treatment but there was no blood work or X-Ray to monitor my condition. I finally decided to only stick to my rheumatologist. I am glad that I made the right decision hence I recover very well and back to my normal self.

    Supplement and herbs if needed should be prescribed by your rheumy. We should not go for these because most of these will push up our immune system and we will suffer further. It happened to me once at the very early stage due to lacking of knowledge. Diet program can only put us into a more healthy position to help us to go into remission faster and maintain the remission stage. Therefore do not just go for diet program and skip your medication because of the possible side effects.

    You are not alone here. Many of us are RA patients and we know how you feel. Just come in to share your feeling if need to, someone will reply to your message most of the time.

    Below link was my recovery process and I hope it helps to inspire you to move on positively.

    healthunlocked.com/ra-warri...

    2 very informative and good videos that answered most of my questions for your reference: -

    healthunlocked.com/ra-warri...

    Exercises you need to do daily to maintain the flexibility of your joints. Below link showed the kind of exercises that I could do those days and slowly I am now into daily morning yoga.

    healthunlocked.com/ra-warri...

    Another very informative link on the risk of untreated RA for your reference too.

    healthunlocked.com/ra-warri...

  • Dear Nicky

    Please do give the NRAS helpline a call on 0800 298 7650 as we have a wealth of help, information and support we can give you. You haven't said where in the UK you live as we do have NRAS groups around the country that we can put you in touch with. Talking to and meeting others with RA can really help get things sorted. Or we could put you in touch with one of our Telephone support volunteers so you can have a chat over the phone which so many people have found really helpful. Knowing you are NOT on your own. Good news is being diagnosed in 2017 is far, far different to being diagnosed years ago as treatment has moved on considerably and the chances of reaching remission have increased considerably and even if full remission isn't achievable getting the RA under control and managed is. You will be able to get your life back on track, NRAS is here to help you every step of the way. visit the website nras.org.uk and/or email us on helpline@nras.org.uk so we can send you our Newly Diagnosed Pack of information.

    Hang in there.

    Clare

  • Hello, I am a couple of years older than you and this all started for me a year ago. I was and still am overwhelmed by it all. My rheumy was lovely but the amount of information given just doesn't sink in. I came away pretty much like you with medications, leaflets and only google to ask. I would say it will get better although everyone is different and as such experiences are too. You need to check the results of the blood tests you've had were. They are unlikely to put you on meds without being fairly sure you have RA. I have days I don't believe I have it and they must have made a mistake but then on the flip side I have days I feel really low and think why me?

    The meds are there to hopefully stop long term irreversible damage. It's like a barrier to keep damage away from joints.

    I would take the meds and see what happens. If you react you can stop them. I take sulfazalazine and have had no ill affects at all. Take them with food and drink plenty of water. I'm sure you've been told to increase dose slowly. You would know pretty soon if they agree and another thing to think about is they take 12 wks to get full benefit.

    The nurses at my clinics see me in between doctor appointments to review. If all is going well they just review meds, check joints and that's that. Any questions I have in between appointments they answer and advise. Maybe call them and ask if you can go in for a chat to get things clearer.

    Sorry if that went on as a ramble I replied quick on my lunch break.

    Hope you get all the answers you need

  • Hi Nicky and welcome to our merry band.

    Unfortunately the longer you procrastinate about is it this or is it that, should I or shouldn't take/not take certain meds etc the bigger the impact the condition is likely to have on your general wellbeing.

    Qs to ask....

    Do you trust your GPs judgement?

    Do you feel comfortable with the rheumy input?

    What do you need to know and understand? (I.e. What blood tests, X-rays led to your diagnosis - have they been explained?)

    What reliable resources are out there regarding info (use reputable websites only inc. NRAS, Arthritis Research)

    What can I do to help myself? - take the lift and hang others opinions. Look at diet because sugars and some foods can encourage inflammation where others may reduce it - dietary changes may help but, for most, does not bring on a remission of symptoms.

    Ask GP to make referrals to:

    occupational therapist for advice re protecting hand Joints (I saw mine twice, came away with some very useful tips & exercises as well as some soft splints to protect my Joints when gardening and typing).

    Pediatrist re feet - mine checked my feet out and then referred me onto orthotics who made me up some great insoles with sunken places for my big toe Joints which takes pressure off them.

    Ask to have vit D and iron levels checked.

    Counsellor - great help to cope with the emotional side of this and I now see her every 1/2 term break (I teach) and every time I come back lighter in mood and with less fatigue for the off loading... this does not have to lead to antidepressants etc just talking to a neutral person.

    When travelling know that every airport as an 'assisted' service you can tap into which negates loads of queuing and standing. I tapped into the Doncaster-Sheffield airports service on my last trip on the outward journey as I was having a mini flare but on the way back didn't need it. They were great and very understanding.

    When/if you take the meds do know not everyone gets the worst side effects and you will find your own routines of when's best for you to take it. Do drink loads of water particularly on med day.

    If your partner can accompany you to one or two appointments whilst you are in these early 'what the heck is this all about' stage it would be of great help to you both in understanding and living with an autoimmune condition in your household.

    This condition will definitely sort out the wheat from the chaff regarding friends and supportive family members. It's saddening and disheartening at times but don't waste too much energy trying to figure out where they are coming from or changing their mindset it's easier to slightly shift your support network and remember you still have loads to offer your true friends and family support when you are back on top of this thing. Sometimes those who love us do and say the strangest of things.... at my mums 80th birthday party I spent most of my time politely saying 'no I haven't take early retirement and I am still teaching full time' as her response to my diagnosis in 2014 had been to tell everyone that I had given up teaching - where the heck that came from I don't know and it doesn't really matter cos I love her loads and that has to be enough!

    Also remember that running may not be viable right now so it's ok to switch to something else (cycling, swimming, yoga, Pilates, etc) to keep fit and go back to running when the inflammation is under control.

    Well I have definitely waffled on there - hopefully there is some positive cheer and hope to spur you on through getting to grips with your condition.

    Do take care

    All the best

    Ali

  • Hello Nicky

    I understand how you feel-I was in denial about my diagnosis for quite a long time before I gave in and started the meds, but in the end wished I'd been more cooperative sooner. If you have access to a specialist nurse hopefully she or he will have a bit more time to explain things and listen to your concerns. (You'll probably get all sorts of weird advice from well meaning friends, relatives, colleagues and anyone else who know a magic cure for arthritis and have no idea what you're going through).

    Basically, the meds are there to stop, or at least slow, the progression and to avoid the joint damage which would cause the limitations you are fearful of. When a good balance is found for you you should be able to carry on with your usual life for the most part.

    best wishes

  • Hi Nicky--- and welcome . I have read all the lovely and helpful replies to your post and there isn't much else to add. I find this site invaluable- any questions you have will be answered by REAL people who are suffering from the same disease as you, so will undoubtedly know how you are feeling. Good luck😊

  • Hi Nicky

    Sorry that you have joined the club.

    Denial is normal. Not looking ill is normal. Unfortunately people making comments about a situation that they don't understand and that they lack the ability to keep their stupidity to themselves is also normal.

    I am off sick and an idiot at work told me that I was stringing it out because I have no rent or mortgage. He had it pointed out that it is difficult to drive a bus when you can't pull up your own knickers. He changed the subject.

    RA is a chronic disease. It will not go away. You will most probably have it for the rest of your life. They Rheummy consultant will try and get you into a place of remission by drugs. They will start, alter and chop and change until they get the right ones for you, and yes it is scary.

    However NICE have some guidelines on RA to tell you what you should expect on your treatment trail. In it they say that RA should be treated holistically. That is you should have support from Rheummy consultant, possibly a nurse, hopefully a support helpline, podiatrist, physio and occupational therapist. Also you should have access to counselling. I didn't want to take up counselling, but it has helped.

    I know that this is a long post, so I would leave you with a couple of final suggestions: avoid Dr Google, do your research on NRAS and Arthritis Research. Every morning put on your public face, know that you are fighting this horridious disease, hold your head up high and ignore the idiots.

    Jacqui

  • Hi there

    I am also new to this, diagnosed a couple of weeks ago and due to start methotrexate injections next week. Madly learning everything I can so, hoping to keep informed and in as much control as I can with all of this.

    My main prob is in one foot and my fingers although do generally feel a bit weary/achy............been thinking I am imagining it. My X rays showed no bones damage so guess that is good. Also found deficient of bit D so starting supplements.

    Generally friends and fam have been great, trying to keep sense of humour is important for me........maybe this will change further down the line.

    Need to lose a bit of weight now!

    Fingers crossed I tolerate methotrexate OK.

    Would be good to hear how things go with you.

    I'm a bit older at 49.

    Vicki

  • Welcome Vicki

    I am a bit older at 52 5/6ths.

    My Vitamin D is low too. I have the wonderful Ad-Cal to chew twice a day. Also, as these don't give me enough, just started extra Vitamin D as well.

    Oh well, if you want to know where half the NHS drugs budget has gone, look in my house.

    Keep smiling.

    Jacqui

  • Hello Nicky and welcome to the forum. Reading your post pretty much summed up how I felt on diagnosis last November. "Overwhelmed" doesn't even start to cover that awful feeling. The lovely people at RNAS and Arthritis Care are only to happy to answer your questions as are members of this forum who know how it is. A nicer, warmer more helpful group I've never met. Please bear in mind that the sooner treatment is started the sooner you can protect your joints from irreversible damage. Yes, the thought of taking drugs for a long time is daunting but the result of not taking them is worse.

    Huge hugs coming at you

    Jan

  • Hey Nicky - great replies given here. I was diagnosed back in November 16 - was in such denial. My blood scores were all positive for RA! Now I have had to adapt and accept my diagnosis. Everyone reacts differently. I found this forum and listening to Clint Paddison really helped. I never did eat junk food but now cut out dairy and meat. I live a more plant based lifestyle. Less stressing. This has helped me. The pain points for me are in my ankles - the right one in particular. I am determined to get better. Just know everyday is a blessing, you can get through this - stay strong 😊

  • Hi Nicky

    I fount it very hard to come to terms with my RD when I was first diagnosed in October 2014 and went through what I can only describe as a 'grieving' process. It took me two years to finally accept my diagnosis and once I did, the 'burden' was lifted. The other thing I learnt along the way is not to google everything as I was going crazy reading what RD can do to your body and the side effects of the drugs. Although I am fortunate enough to have a consultant and GP I can trust, I was still very wary. They were very patient with with me whilst I found my way out of the 'grief'. I must add I had other stresses in my life during this period too which did not help. You will get to the point of acceptance and treatment...

    Take care x

  • Hi Nicky and Vicky - and anyone else reading this who is newly diagnosed. I find this forum so valuable and encouraging because so few people really appreciate what RA is and can affect lives. I'm lucky that my partner is selfless and puts up with all my limitations but I developed RA 36 years ago when the drugs were really inferior so have sustained a lot of damage. Embrace your treatment and you are unlikely to end up anything like me. NRAS have a book: Emotions, Relationships and Sexuality that gives an insight to what many of us go through. You can read it on their website or they'll send it to you. Essential reading for family and friends too! I wish you the very best, life need not go downhill.

  • It may not seem it just now because your Rheumy didn't take the time to explain about the disease but you're in a fortunate position..... you've been diagnosed before things get too bad. That is by far better than being in a considerable amount of pain because often pain means the greater likelihood of damage, I guess that's why you say you feel a fraud. I can categorically say you aren't! I was also diagnosed promptly & honestly though I didn't realise it at the time I didn't really realise how fortunate I was even though my Consultant explained it to me, well you don't at the time do you, not until you see you don't have the damage your Nan had, my only other benchmark of how RD can affect a person, but she hadn't the advantage of the meds we have today. I've very little in the way of destruction thanks to my GP recognising symptoms I had no idea of & referring me so I was diagnosed & on meds within 2 weeks of going to see her with painful feet.

    You'll understand the more you learn about the disease, promise. Being here will help with that, there's no better way of learning about what you have than talking to those who also have it so stick around, you'll be helping newbies yourself before long!

    So, try not to think of side effects, put that energy into the SSZ working. That in itself is a positive, your Rheumy must think that it's been caught early enough, it's less often used as an initial DMARD nowadays. Yes you'll likely have to take meds for the rest of your life but it's a small trade-off for a relatively normal life, because that's the intention, meds making us near normal again & the hope is early diagnosis will mean you'll be able keep it in check relatively easily. It may take a while but the sooner you start your SSZ the better. Just so you know your Rheumy will be looking out for your blood test results so will be aware something's amiss when they're not listed.

    I really hope does help being here. I didn't have the advantage of this group when I was diagnosed & was living abroad at the time so felt somewhat isolated in the early days because I knew nobody else with it, except for the other patients I met in my Consultants waiting room. So, welcome & if you have any questions however daft they may seem it won't be anything we've not covered before many times, Rheumys just don't have the time to go through everything nowadays & personal experience is often better anyhow!

    Take care. 🙂

  • Omg sweetheart...I really feel for you...I can relate to almost everything you said and I have had disease for 20 + years and am 42 now.....

    Where are you based? I am a little concerned u say up you have no friends....I am sure that is not true....but a really important aspect is to have people around who love and support you.......well no one can really understand and that's why it good to come on this forum so well done......

    I only started recently but it has really helped......

    I am based in London....and tho I may be far away u can always contact me via email/ phone if you fancy......let me know....no worries either way..... U shouldn't have to deal with this alone.......best of luck

  • Hi Nicky,

    Sorry that you've now become a member of our club,but welcome - I'm sure you'll find it so helpful throughout your journey along finding the right meds and getting back into a sense of normality for you. I was diagnosed just after my 41st birthday,after almost a year of being told I had viruses non stop,even though every one of my blood tests came back clear,and even when I physically couldn't bend down (I've had three back ops since 37,so have always squatted with my back perfectly straight when bending, in order to prevent further back damage) because the pressure in my legs was so intense I honestly thought they were going to explode,and even then I just got told it must've been the hot weather(I'd just come back from 41degree heat in turkey and didn't have these issues) I ended up having to ask for a second opinion from a different gp,and on his first appointment he referred me to a rheumatologist. I was lucky in the sense that I had private healthcare with work at the time,so was seen and diagnosed with PsA,along with a fair few other ailments on my first consultation within a week. I'm unfortunate in that my bloods never tell the true story of how my body's behaving,even in the middle of a huge flare,and my inflammatory markers will still say that I'm perfectly healthy,luckily the nurse saw me during one such time,along with a dr on another visit,so we do believe this to be true in my case,and now know never to just go by my blood results!! Unfortunately for me,because the first gp had dragged his heels by that time,my joints were so swollen that I'd gone from being a 6/7 day a week gym person to having to crawl up a flight of stairs on all 4's because of the pain. I'm so glad I stood up to the gp eventually and insisted on a second opinion,as it's your body,and if you're generally fit and healthy before,then you're smart enough to know when something doesn't feel right. I had to give up all exercise (even aqua) because of the inflammation,but because I struggled with work for so long,and I suppose I was in denial at suddenly becoming so sedate at such a young age,that I fought for the first 18 months after diagnosis - when I did eventually stop (I took voluntary redundancy for the sake of my physical and mental wellbeing) the rheumy nurse said that's why it hit even harder,and I ended up in a wheelchair at just 42!! Luckily for me,after several failed drug regimes,I've finally got the one that is working for me,and I only use my chair if I know we're going out for a long day/night,but finally,after almost three years on the rollercoaster of emotions,I can finally feel settled enough to start planning ahead again(just booked my first music festival again since diagnosis - that's a positive,you generally get much better seats,and only have to pay for one ticket when going to gigs now,and we have to take our positives where we can😊) I also saw a psychiatrist for a few sessions not long after diagnosis,because it literally is like grieving for the life and plans you had,and have to accept that it's not you being lazy,but your body's way of preventing you from doing any further damage. The sessions really helped me rethink my way of thinking,and to concentrate on what I could still do,instead of what I couldn't. RD certainly helps you realise who you can count on as true friends too - it's amazing the side effects that getting diagnosed with something like this proves to us.

    Anyway,the point of my story is that now,age 43,I'm slowly getting my life back on track,I've yet to get back to the exercise,but I've been given hope by many inspirational people on here that it will happen at some point(including a lady who'd been running marathons for the past 9 years..... if I can get upto half her fitness I'll be very happy😊) ,I just need to build my cv levels up slowly first,and just get my body used to moving again on a regular basis.I've not been under control as it were for long enough for me to commit to saying I can definitely get up in the mornings at the moment(2 1/2 weeks of being back to my old self when the drugs finally kicked in before some 'considerate' old sod rear ended my car,and put me back on the merry go round again!! You honestly couldn't make it up 😂) I can't commit to the industry I've been in since leaving school anymore(far too many hours/inconsiderate people/too much travelling) so one of my shorter term goals is to finally get back into work,luckily the skills I've learned can be used for quite a few office roles,so fingers crossed I'll get something fairly local when the time's right. But the story is that no two people react the same to any drug combo,you just have to know your body,and be prepared to insist when something doesn't feel right,NEVER apologise for feeling low because of these diseases,and remember that there is life to be had,it just may take a while longer than you realised to get there.... then again you could be one of the lucky ones that the first lot of drugs does the trick for you(Damn you if you are 😝!) So don't get scared by the side effects of the meds either(if you read them in paracetamol and other household meds you probably would never take them either) build up a very good relationship with the support team that will be in place for you ..... rheumy/rheumy nurse/gp/OT - these usually come to your home and can be real life savers,plus the various others I've probably left out,and more importantly,your family and true friends,as you'll prob need them more than ever before,regardless of how Independant you are.... I was the same,so it took me longer to come around to that one,but they will be your lifeline no doubt at various times.

    Take care of yourself,listen to your body,and if you need a day of moping or feeling low,then allow yourself the day,and just start afresh the next - this is a long and unpredictable ride you've found yourself on,you just have to find your way of coping,whichever that may be,and of course,there's always very helpful people on here that you will make you feel you've known them a lifetime in just a few messages/questions.

    Look after yourself

    Nicki x

You may also like...