Rheumatoid arthritus

[Haani06]

I am just diagnosed with RA and right now i am in a state of disbelief, shock and fear... thousands of questions are roaming in my mind and i m just afraid to google them..i guess i need somebody to tell me that ill b ok... will i ever be?? Will i ever lead a normal life?? Will the pain ever subside?? How does it affect u physically? Will i ever b able to have children? Is it a life long disease?? Will i ever be able to travel like i used to?? Do house chores like i used to?? Sorry people that i m venting here but i just dont know where to go and what to think... please help me!

[helixhelix]

It's a shock, and we've all been where you are now and it's scary & horrid (and painful!). My main piece of advice is to try to avoid reading the horror stories on the net - stick to reputable sites like NRAS.org.uk or arthritisresearch.org.uk. There's a lot on the net that's no longer true as there are many different treatments now.

And yes you'll be ok. It can take quite a while to find the right balance of treatments but for most of us that happens. I'm now 95% normal and live a good life, am rarely in severe pain and can do most things I want. Remember that forums like this aren't representative as people tend to post more about problems, or are the people with the most difficult versions of this disease. People like me don't often post, as it's boring and irritating to people who are feeling rubbish if i post about having another good day!

Try not to panic, and take it one step at a time.

[AgedCrone in reply to helixhelix]

You are right helix helix ....I am 17 years along the RA journey & most of those 17 years haven't been too bad, I have no joint damage - despite refusing to take Mtx for the first three years....I know that was silly......but I knew nothing about it & I was scared of the side effects I'd heard about.

I' D had some nasty side effects.....prednisolone & sulpasalazine were not for me, but for many people they work well.

I've just gone in to RTX .....only two infusions so far...... But so far so good....so any newbies here please don't think it will all be bad.....there will be bad times......but if you can take it one step at a time you'll get through it.

A lot of people who post here have had RA since way before all the new drugs were available & sadly the joint damage they have experienced will hopefully not happen to the newly diagnosed.

[Gigi71 in reply to helixhelix]

Hi HH just looked on your profile page and about 5 years ago you posted an open letter from another forum, about RA or PsA also a link. Was so good, maybe time to show again. Xx

[popsmith1874]

Welcome to our gang and although your head will be spinning with all different things going through your mind things will get better once they have you on the right meds that stabilise your RA life will be better and you will adapt. I have had RA since 2014 and it took me nearly a year to accept this disease but I've learned to live with it and this forum and all the people on it are a big help and there is always someone who will be able to answer any queries you have xxx

[Beaches2]

Morning Hannaa

Well firstly, you have come to the right place for endless support and reassurance. This site has been my lifeline.

To help answer some of your questions......I was diagnosed 3 years ago. It came on overnight, an explosive onset, I was literally floored, could hardly move, huge swollen joints, horrible pain. Diagnosed just on Christmas 3 years ago and started on methotrexate.....and given steroid injection which was a huge relief. Struggled through the first year trying different meds, various side effects and quite a lot of steroids!

Like you I was in a state of shock, scared for the future.

For the past 2 years I have been on a drug regime that works. Now I am playing active sport again and generally fine. I take a painkiller or anti inflammatory maybe once a month and of course haven't need any steroid.

So my life now is pretty normal, I am very aware that I have this condition and take extra care to eat well, exercise and get plenty of rest. The prognosis these days is very much better than it was even 10-15 years ago so although still no cure, there are very effective treatments.

Remember people will use this site when they are either newly diagnosed like yourself, or having some problems along the way, most people are just fine once they find a drug regime that works for them.

Hope that helps a little 😉

[JacquiThomas999]

Hello

Sorry that you have had to join the club.

As others have said stay off Dr Google. The NRAS has lots of booklets for you to download. I would suggest that you have a look on their website.

Jacqui

[farm123]

This disease is so variable and everybody reacts differently both to the disease and the meds there is no right or wrong answer to any of your fears. Life does go on but usually you have to take your RD into consideration - it can be controlled but will not totally go away. You will find a new 'normal'. Unfortunately it does take time to find the right drug or combination of drugs to make a difference (some find that diet has an effect but I have yet to find any connection myself). If you see children in your future it needs to be taken into account when discussing which meds with your consultant. It will be tough with little ones but they will grow up not knowing you any different. I was 19 when diagnosed and have 4 children - I had 2 in my early 20's (was only in my left knee at that time) and 2 in my 30's which was more difficult but you find a way to manage. For me I had a knee replacement at 48 but that was the knee where it has always been in for around 28 years. It is like being on a roller coaster with its many ups and downs. Farm

[Padram]

Hi Haani06, thought this might give you some info . aarda.org/autoimmune-inform...

All these lovely people have given wonderful advice and are so supportive.

[allanah]

Ok big breath and relax! All your questions above are the ones I asked ! If you look on the NRAS website there's loads of advice and they have an amazing helpline which I think I used about three times a day for the first week !

It takes a couple of month to get the drugs into your system but then you will find one that helps ! They will keep going until they get you sorted . Yep life's a bit different but don't be put off by people who have loads on f problems , some people take one drug and they are fine .

For just now the best thing is to rest and I know this is hard try not to stress your body as it can make you " flare up" thus more uncomfortable. Look up something called spoon theory which will help your body until you get a bit more controlled.

Also have a good chat with your gp. They are excellent at getting pain relief sorted , if what they give you doesn't help go back and ask for another type.

My main advice is keep positive have patience , if there is a NRAS support group near you I think they are great, really helped me !

Good luck and write all your questions down and ask the Rheumy in your next appointment ( but nras helpline is also brilliant ) xxxx

[Eiram50 in reply to allanah]

I loved the concept of spoon theory - such a helpful way of thinking about things!

[Haani06]

Thank you all for your kind replies and support... can anyone please guide me about the diet thing?? M totally vlueless as to what extent i should avoid proteins and what to and what not to eat?? Please provide me with a lost of things

[allanah in reply to Haani06]

You will find good advice about diet , healthy Mediterranean style diet is suggested. A lot of other diets can be dangerous if you cut out major food groups , be careful of ones you have to subscribe to or pay for. So have a look in the NRAS site x

[Kerina in reply to Haani06]

My pain is well under control. A few aches now and then but not too bad. Diagnosed two years ago. Much better when mtx started working. Not very good on the diet side. Am on a see food diet. See it and eat it LOL. NRAS advice line is excellent. Try not to get too worried. I have a very physical job caring for people with disabilities. I just have remember to be careful and not go mad. I have a good employer who has put risk assessments in place for heavy jobs. But am ok with most things 😀 Good luck and you have come to the right place for support 😀

[Jacki08 in reply to Haani06]

Hi Haani---- there isn't really a "" diet thing" that suits me. I just eat the same way as I always have done-- fruit and veg etc -- and a treat at weekends lol. I do however find that if i havent drunk enough water i feel blah Sorry you have had to join this site, but hopefully you will find out the answers to the many questions that you will want to ask--- they will probably be things that many of us have asked after being diagnosed. 😊

[XsarnX]

Hi..I'm also new to this group haani. ..you can lead an almost normal life. .its not life threatening but an awful disease to have....first thing in the morning we all try get out of bed that's when it starts haha...stiff joints are normal with RA. ..after the moans groans and noisees of walking about first thing its a bit easier. ..everyone is different. ..keep to this site there are other ppl like us and some worse..it's helped me ...you can have children you can lead an almost normal life...I eat what I fancy but do go to an exercise class ...leaving there I feel better next day can't move but it's gets you out meet different ppl like us ...hope all goes ok once they give you ye right meds your feel a lot better ..an yes like the others relax or go for slow walks if you can ..I say slow whatever is a comfortable pace ...mine usual starts well strivin along happily to a very low pace of ouch ohhh and then home

[Gigi71]

Hi and welcome. I was diagnosed with Lupus/ RA over 30 years ago 40. Mine was erosive, so many ops, many ups and downs along the way. I had to work as husband left after a year, as unable to cope, I had to buy another house with a mortgage as two teenage sons, was very scared to begin with, no Dr Google, just leaflets from the rheumatologist. My breakthrough was Humira 8 years ago, have always been a positive person and have a great family and good friends. I also started a gluten free and low sugar diet over 3 years ago and this has helped me. I only joined this forum in August and have found it a very helpful, with kind people always ready to help. Wishing you all the very best. X

[Nickijk73]

Hi,

Your thoughts and reactions are completely normal - as I say to friends in order to get them to understand just how big an impact the initial diagnosis and drug regimes had on me,is that it's like almost grieving for the life you know and love,and then learning to adapt to a new version of normal for you. Everyone reacts differently,some have it lucky in that the first set of drugs they get put on work for them,but in most cases it's not unusual to go through quite a few cocktails before finding the ones that suit you - it can be scary,but as long as you don't beat yourself up because you can't do things you used to take for granted,and just accept it's your bodies way of protecting you from damaging it further,I found that helped me a lot in getting my head around things - I used to constantly beat myself up and just assume I was lazy,but it's not that at all - unless you've been through it,you really can't explain how the fatigue suddenly hits you like a hammer either,so take it easy,give yourself plenty of time to accept what is happening to you,and no matter how small or silly you may think a question you have is,believe me,99.9% of us would have probably been thinking the exact same things at some point somewhere along our journeys too. There are always helpful and friendly people on here,so no matter what time of day or night,if you post a question you'll usually get an answer pretty swiftly,or if not an answer,some reassurance and pointing in the right direction.

Here's hoping tonight has gone some way towards putting your mind at rest. Also,if you're unsure of something that's been said at any of your specialist appointments,get the consultant or nurse to go through it with you until you understand exactly what it means - it's your body,and you need to know exactly what's going on or you'll just end up stressing over something that may be avoided?!

It took me almost three years to finally get the right drug combination to work,but then I had other serious health issue to start with that complicated things on the meds front,and I've hit some very low points along the way,but from what I've learned,again,that's a normal reaction to basically losing control over your own body for a while!! Now that the drugs have clicked into place as it were,I can see a future again,ok so it's not the one I had planned three years ago,but at least I can think about planning again - it will happen,but the best advice I can give you is to take things as they come,don't stress or worry about something that hasn't happened yet(or may never)and you'll find it a lot less stressful for yourself.

Good luck and best wishes xx

[Phoo2 in reply to Nickijk73]

What amazing advice!!! It is really scary to lose control of your body but accept help......u will need it,,...get support group around u......I Didn't for many years and I regret struggling by myself..... There's just no need .......Best wishes and good luck

[Eiram50]

Lots of very good, appropriate advice given and I would agree with it all. Basically, it's a crappy condition but it does , through time, become more manageable. The thing to remember is it's very different for each of us and although we have same/ Similar diagnoses it's very much a continuum - one person can be at one end of it and barely be touched . What I'm trying to say is not to be frightened by what you read or hear, be guided by your own body and your consultants and I've no doubt you will get to a much better place. Best of luck with everything x

[Phoo2]

Also I thought it might be apt to add that there is amazing research going on at the moment.......when I was diagnosed about 20 yrs ago...it was nasty gold injections....now you have biologics......and there is promising research about vagus nerve stimulation that 'switches off' arthritis

bbc.co.uk/programmes/articl...

Take a look the future is promising...

[Gigi71]

Thanks for the info Phoo2, that was very interesting, I am on Humira an anti TNF as has been a wonder drug for me, but is now causing small skin cancers. most likely too late for me, but for younger people, something to look forward too. X

[Phoo2 in reply to Gigi71]

Hi Gigi - I wouldn't say that... Biologics are hideously expensive for our health service to run as well as side effects etc..... I think if the nhs find a way to help people with a simple procedure that lasts 10 years plus, that's got to be beneficial to everyone right????! Well here's hoping!!

[Phoo2]

Btw so sorry to hear bout your skin cancers - omg - that is awful ...... I had no idea humira could cause that.... I start cimzia soon and have been on Enbrel - am I at risk??

[Gigi71 in reply to Phoo2]

I have been on it 8 years and only started problems about 3 years ago. Was meant to come off it last year and go on to Rituximab but backed out as Humira had changed my life. We are all different so I wouldn't worry at the moment. When reading posts on here so many of us have different reactions to all the drugs we take. I had to come off Azathioprine for the same reason. I am closely monitored by the Dermatology dept., so we shall see. All best wishes to you. X

[hairloss10]

Two years into treatment for RA, phenomenal weariness and massive hair loss....... I am quitting all RA meds. They are toxins and I am sick from them and of it. It is risky but I am frustrated to no end. They lie about hair loss. Most everyone has hair loss. Because of the red tape involved in letting the pharma know, practically NO ONE gets heard. It is bullshit. Hair loss is a major side effect of every RA toxin. Get another opinion, more tests and pray. High RA factor is not enough to put us on toxins. My doctor rushed to judgement based on this test. Don't get bullied like I did. I will know in a few months if quitting the toxins will hurt me or heal me.

Pay attention to what you eat. I do everything from scratch. All additives, preservatives and chemicals can set off a flare. Soy products are a switch for me. It is in EVERYTHING. MSG (has a dozen other names to hide it's presence) can put me in a state of pain and stiffness. Eat nothing from frozen meals, jars, bottles (salad dressings are lethal), cans, or jars. Check ingredients. Eat no fast foods. Not only McDonald's, but subway, fridays or any days !!!!!!!!!!

Eat nothing from China. It takes massive amounts of antibiotics to "cleanse" sea food in order to be imported. They use raw feces to fertilize fields. NO root vegetables. Actually, nothing.