Just been diagnoised with rheumatoid arthritis, my inflammation shown up on blood test but not rheumatoid factory, i had my first appoinment with rheumlogist done xrays and more bloods , got another appoinment coming up , im just really strugerling i can just get about the house , i took my son's to the park for a hour yesturday , came home my hands and wrist all numb , knees and ankles red hot and a little puffy , today i can bearly walk knees are soo stiff clicking all the time, am I being the world begest baby ? I only started with bad symtoms for the past 3 weeks. Any advice welcomed
Can't cope with r a pain : Just been diagnoised with... - NRAS
Can't cope with r a pain
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Annemarie24
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Your only just started this long road we are all on darling. I suggest if you have a bath go and lay in a hot bath that will help for a little while and it might help you relax a bit.xxx
Thank you
Hello and welcome to the group 😊Are you taking anything at all for your RA? Did your rheumy or GP not give you anything for your pain until you get put on meds ?
Page 16 in this publication from NRAS may help you.
nras.org.uk/data/files/Publ...
You could try heat or ice to your painful joints plus pain relief, it varies from person to person which they get the most relief from. Your GP can also help you with pain relief until you next see your rheumy.
We have all been where you are now so keep coming here for support. Once you are on meds you will start to feel much better.
Thank you .Yea the put me on naproxen and nefopam just not taking the pain away anymore ,
I have been on meds for four and a half years and don't feel any better.
I think we have to be honest with people. Meds don't always make everyone feel much better Kitty infact, for many, they can make us feel worse. Support is amazing to newly diagnosed however to mislead that 'once on meds you will start to feel much better' is not fair and honest advice.
I was given a steroid injection to tide me over until the RA meds kicked in and it was a lifesaver. I rang the nurse helpline to say that I was struggling and they told me to go straight in - no waiting ages for an appointment. You should ring up and tell them the situation.
I know that it's different for everyone but once my meds kicked in things really improved for me and I rarely need painkillers.
Thank you , i will give the nurse a ring monday if iv had no improvement 
It's true, everyone IS different and respond different to meds. I had a life threatening experience following a steroid injection into my shoulder and now won't go near steroids. My treatment to control RA is still not effective and I am wearing every symptom without much pain relief at the moment. Bladder infection too!
Hi Shalf I hope you don’t mind me asking but what happened after your steroid jab?
Hi, don't mind you asking at all.
I collapsed due to adrenal insufficiency. I understand it was the dose of steroid that caused this.
My blood sugar was at a life threatening low level and I was immediately admitted to the Endocrine ward following A&E.
If I ever, hopefully gain the strength and energy to address those issues with all concerned, I truly will.
The shoulder ' specialist' not only misdiagnosed me but almost killed me!
Steroids do alleviate some people's pain and I think my experience may be a circumstance that doesn't happen very often but the scar is there and I am petrified of them. Downside to this is I am not getting much relief for pain. Biologics and mtx still haven't proved themselves to me yet.
Sorry to hear you’re having to cope with all this and a urine infection on top of everything. My daughter in law has just had one and it made her very poorly. She ended up with penicillin but 2 weeks on she’s still not her usual self. She doesn’t have RA so to have both must be awful. Sending you a virtual hug.
Hi Kalimer, it's been a very hard start to the year for me health wise. I have had constant UTI's. The antibiotics given were sensitive to the bug and should have worked but didn't. I am now on a 7 day course of Cefalexin 3 x 500mg per day. This morning I actually feel more alive! Can only presume these one's are packing a punch. I do hope so! Urine infections drain the life out of you. I'm so glad I was fit before I became unwell as I think its helped to fight the overwhelming fatigue and weakness from RA, Fibromyalgia and recurrent urine infections. Keeping as fit and healthy is so so important for body strength. You never know when your body may take a dip with these unpredictable conditions.
Your hug is appreciated. Sent two back for you and daughter in law.
Love to both xx
Glad you’re on the mend now Shalf and may you have a good length of feeling much better too. xx
I had asteroid injection all it seemed to do is give me mad dreams , pain relief is not working at the minute , i cant imagine being in pain for that long
How long ago did you have your steroid injection they can sometime take about 3 weeks before starting to work
So sorry I missed a word out, it really isn’t the worst thing to give someone hope by mistake when they are desperate. This isn’t something I say, check my posts, it was an omission ok?
I hear what your saying and it's TRUE you should not expect miracles. BUT I was put on new meds 4 months ago and its gave me my life back I'm Josie again I visit friend I go to the shops. I'm realistic I still have a chronic condition and will have flare ups and bad days but on the whole I'm good
I’m so sorry your struggling and in pain . This disease is bloody difficult to control. Although we have the same disease and symptoms it effects us in different ways so what works for one does not necessarily work for another. Please contact your clinic only so much ice/ heat packs will do. It’s difficult for most of us but much harder when you have a young family to look after I’m sure your clinic can help
Annemarie24• in reply to
Thank you 🙂I have 2 young boys and I can bearly do anything with them , hopfully when i start meds it will help
Prednisone has saved me in severe RA flares
Annemarie I was like you with two young children ( 7 and 3 years old). I’m 67 now with two grandchildren (9 and 13 months). Life will get better for you . Look after yourself as much as you again, eat as healthily as you can, cut red meat out , try to about stress and research this burden that we’ve been given. You may get remissions, the pain will reduce and then it may come back. It’s a yo yo - good times, bad times but this site is v supportive. You will find strength that you never imagined you could have and your love for your little children will also help to keep you going. I hope you have a supportive partner , family and friends too. And a good GP.
Hiya Annemarie24 & welcome. Where you are just now is where most were in that inbetween period, that time before your start meds. Unfortunately RD pain isn’t really helped by what your GP has available to him to prescribe. Once you start on your specialist meds given time you should see improvement. As the NRAS link KittyJ provided states; An effective treatment should reduce inflammation and its side effects: pain, swelling, stiffness and fatigue, page 14. None of the DMARDs are fast acting though, they can take 12 weeks or so to be fully effective though subtle improvement can be noticed earlier. Sometimes a Rheumy will prescribe as short course of oral steroids, these are intended to be a bridging med until your DMARD becomes effective.
Meanwhile you could try Epsom salt baths, cold compress or ice pack, such as an unopened bag of frozen peas or one specifically for ice, this is the one we have amazon.co.uk/Koolpak-Sports... which can be used on specific joints. In fact you could follow RICE: Rest Ice Compression Elevation, so that means taking time out if you're to have any benefit I'm afraid.
Do you have anyone you can call on to help at all? You may find it most helpful if you have with having young children.
If there’s anything specific you need answers to just ask, someone will have had experience. If your next appointment with your Rheumy isn’t imminent you can always ask your GP if he thinks alternative pain relief & NSAID may help.
Hi NMH, the NRAS info is quite right. An effective treatment 'should' NOT 'will' .
I am no better with meds after almost 5 years. I never lose hope though!
Neither should you! 🥺
Maybe the info could read 'should, hopefully,... Following posts it's clear everyone's experience is so different. Maybe the word 'hopefully' should be in all responses rather than 'you will...'? Being hopeful seems a vital component but I am sure it is difficult for you and others who struggle to maintain it continuously.
Thank you for the tips 🙂
Hi Annemarie. Did your Rheumatologist give you anything to help ease the pain..
I've tried most of the medication for Rheumatoid Arthritis,but the Methotrexate was the best for the pain.
But it had to be stopped because it messed my blood up..Have tried several other types of Rheumatoid medication but they upset my stomach very bad.
I was put on high dose Prednisone for 6 months. They did help. But had to come off them very slowly..
You could buy some Wheat bags. I warm some up in the microwave. I also keep one in the Freezer. I take the cold one to bed with me to put my hands on,because I wouldn't sleep at all otherwise .My hands swell and burn so much. The cold wheat bag is Ohhhhh. Lovely.
You're not being the World's Biggest Baby. This condition is something new to you., something we could all do without.
Once you're on the right medication, hopefully it won't take long before you feel a bit better. It can be a long road ,but you'll get there.
Good Luck. Gjkas.
Thank you, yes I'm on nefopam and naproxen and had a steroid injection a few days agao too , i start the rheumo meds next weeks so fingers crossed
Hi Annemarie, Ill keep my fingers crossed 🤞 for you.
Perhaps the 1st Rheumatoid medication will work for you 1st time.
You'll get there. Just give it a little time to get into your system.
Good Luck. 👍.Gjkas.
Hi Annemarie, welcome to this community.
So sorry you are having to cope with RA and trying to look after young children.
RA affects us all differently but usually also affects each of us in many ways. If possible, you should take care to balance activity and periods of rest, especially during the difficult time between diagnosis and when DMARDs should finally benefit you.
I found that Naproxen had no benefits since RA pain, in my case, was severe.
The drug ought to help with stiffness as it is a NSAID, as are Diclofenac and various others I tried before diagnosis.
They might be more effective for OA.
The other drug is a painkiller but there are stronger ones available.
The steroid injection (I think you said you received one) should work within days.
If not, please do not suffer. It is unnecessary, especially with your childcare responsibilities. All of us should have freedom to call and explain that drugs are not sufficient.
Not sure if you have seen a Rheumatologist but it is usual for them to get you started on DMARDs and to ensure you are monitored properly too, usually involving regular blood tests.
Does your Rheumatology Dept run an advice line?
If so, it is usual to call and leave a message then a specialist RA nurse will get back to you, perhaps having spoken to the consultant first. This goes into our records.
My heart goes out to you, having had four sons myself. I did not have RA then, for which I am very thankful.
Wishing you all the best with getting help!
I will have to check about the advice line, i have seen the rheumo once and have rheumo nurse on Thursday, so fingers crossed
Hi Annemarie24. I hope you get the meds you need to ease your pain and discomfort soon.
Sometimes taking the pain killers can make things worse. The more you take, the more you need. They say 'pace yourself' - not easy to do. You have to find your own way. You can rest but you may find you seize up even more, that's certainly what I find. It takes time to find what suits you best. Take care.
Bless you. You’re not being a baby, the pain can be terrible. I remember before I had my diagnosis I would be crying all the time, because I was just so fed up of the pain. I used to have naproxen but found that it stopped working. I now take diclofenac which is great if taken regularly. Although can sometimes take a couple days to build up/kick in.
Also I use cocodamol when the pain gets bad and this seems to take the edge off of it.
I know everyone is different - but I remember just willing to try anything back when I also had bad pain.
I’m just wondering if they could offer you some sort of relief with steroid injection whilst you are waiting for your results/to begin treatment. My rheumatologist offered me this, and it worked wonders as a bit of a stop gap.
Remember try to keep moving as sitting still for long periods can make the pain worse.
Fingers crossed you get some relief soon.
Thank you , yea i was on co codermals but they made me sick , i was giving a steroid injection last Wednesday it did help with the stiffness gave me freaky dreams lol ,
Yes steroids do give freaky dreams I also sleep walk and sometime go very red and flushed but the reward is about 12-16 weeks relief
What a lot of people you speak to dont understand RA is effects not only the joints but all the connective tissue around the joints I find that when my knees are bad I find they sometimes give way because I am not locking them
Have you thought of a walking stick or crutch for support
Any one have trouble with there knees ? I normally have stiff and clicky knees but since i went to the park friday I have really unstable knees feels like there ganna give way, jelly knees i dont want to try and do the school run and fall 😂
My knees, shoulders and ankles are my main source of pain. Luckily my hands are not really a problem. Last August I had fluid drawn off my knees (caused by the inflammation) and steroid injected into them.... and I’ve not had a problem since then. Working great and not painful. Sometimes a steroid joint injection can give you the relief you need until the drugs kick in and start to control the RA better. Supposed to offer relief for up to 3 months. Have a chat with your rheumy. I’m still working on my shoulders and ankles 🤔
Morning, I am sorry to hear that you are in so much pain. I was diagnosed with inflammatory arthritis last month after months of being in agony and trying various dmards. I had all the diagnostics done in December and they showed nothing except some fluid around the knee and some bone spurs in hand. I had to fight to get be taken seriously so I hope you get the answers that you need and dont back down. If this helps try using the microwave heat bags they helped me alot especially as they relieved some of the pain. I am taking co-codamol at night as pain is unbearable. Please dont worry too much and get as much rest as possible. x
So sorry to read you are suffering so much. I took various painkillers that didn't work but the steroid injection certainly gave me some relief (took a week) before the DMARDS gradually kicked in. It might take a bit of time before your Rheumatologist can find the right combination of treatments which work for you. Meanwhile hot/cold packs on the swollen joints can help, Epsom salts baths are soothing too and rest. People's experiences are all vey different it seems. I do hope things improve for you.
Oh bless you I can’t even imagine what it’s like to cope with this horrible disease with small children my heart truly go s out to you . Be strong you will get their I am sending you a BIG angel hug xxxx
Hang in there. Things will get better 🙂
Hi annemarie24
So sorry you have been struggling.
My advise like above is to call the help line or GP any get medication as a stop gap untill you are on the correct course of medication.
I had my first hospital appointment in Dec 2018, been suffering with symptoms and hands , wrists right shoulder and left knee for about a year before hand, I was first prescribed naproxen which did not help, then etoricoxib which helped by taking it at night along with codine at night and paracetamol during the day, when I could not cope and had to have crutches to get about, I to had steroid injection in shoulder and knee, which worked wonders for shoulder but did not work in knee.
All whist working full time in a demanding stressful career.
I am finally now on sulfasalazine tablets since August last year, I do think that it has been a uphill struggle as I don't think I was really taken seriously in the beginning, as I too did not have the RA marker but inflammation showing in bloods with physical symptoms.
I have learned to press harder concerning my health care now. I am coping better now as I now know what I physically can and can't do, I now know when to rest, take a bath, sleep and nap on weekends to recharge, my social life has changed I have learned to say NO, to certain things socially, I have changed careers for a less stressful one which has been one of the biggest hardest change for me, which has helped me so much, and I have learned to put myself first a bit more, which had been strange for me. I have only really accepted my condition and all it brings recently as I had it in my head that I could somehow get over it and be better and my life would be the same as it was before my diagnosis, how wrong was I.
This site has been a life-changer for me with all the advise and support everyone here gives its wonderful knowing others have been in the same situation as you in all stages.
I hope you get some relief pretty quick and are on the right course if treatment soon, I do hope family and friends are helping you also. And learn to shout and be heard.
Take care x X 🥰
Oh my god i feel for yous who have young children having to cope with this disease it must be very hard I have had this for 20 years and i have had been going through the worst time in years. Phoned the help line and they said to get in touch with gp for a steroid injection was told the only doctor who could do this was on holiday back on to hospital after many more calls they gave me a Depo injection which did not help much.Could not lie in bed it hurt so much sat in my chair for nights it should not be so difficult when trying to get help.Sorry for jumping on your post and hope you get the help you need soon.
Hang in there. It may even take more then one tries for different medications to help. Prednisone can help while the other medication have time to work. It can take up to three months for RA meds to work so prednisone is an option but you can't stay on it too long as it can have serious side effects. Don't give up. Some of us have had years to get diagnosed. It is a long road but you will find a medication that works and for me I still have the pain but it is not as bad as it was. You will learn to live with the pain but it should become minor.
Hi Annemarie, So sorry to hear about your struggles. It is very soul destroying at the beginning. When I finally got to see the specialist I was put on a course of Steroids to kick start the treatment. I had taken so many pain tablets starting with diclofenac (which they do not prescribe now) to Tramadol, strong strength Co Codamol and Buprenorphine patch. It was dreadful then I was put on Methotrexate, slightly better but not enough to function properly. I was about ready to give up all together (Not literally but felt like it) when I was put on a biological Entanercept which was like someone had waved a magic wand. I felt so much better. There is light at the end of the tunnel. That was 10 years ago, ok I've had flares but nothing like the initial start. I seem to be getting more flares now but I think it's a combination of me getting used to the drugs and getting Older (66 now! Can't believe that, still 18 inside. ) I do hope they get the right mix of medication for you. Don't be like me and suffer though let them know if things are not working for you. Good luck x x
What RA drugs have they put you on? They take a few months to kick in. I was like you at first, so they put me on daily steroid tablets for 3 months on a tapering dose until the RA drugs kicked in. Steroids can make you feel like normal again, but not advised for long term use.
Iv not started my r a drugs yet , iv got rheumo nurse Thursday so i think i mite get them then , I'm goin to phone my docters today see if they can up the pain meds , but my docters are not the most helpful so will see what they say this time lol
Bless you my dear, I know you think your world is caving in but you’ll get through it, I promise.
I’ve had RA and Lupus for 40 years (20 when it started) and rheumatoid factor didn’t show in my blood till a few years back. Takes a while for the doctors to get the right recipe of drugs to suit you so hang on in there. Very important - accept all the help you can get, don’t push yourself too hard because you’ll only suffer the next day.
Good luck and much love,
Fiona xx
Any one suffer with lower spine/back pain ? Kept me up most of the nite
Hi Anne Marie, so sad to hear you're feeling rubbish. I was like that when I first got diagnosed. Keep your chin up, it will get better as they find the best way to treat you, be patient it will happen. You need to get LOTS of help from family and friends to get you through this. Protect your joints ALWAYS , get others to do anything that may worsen your pain later, RA is a severe condition but treated properly and having the right attitude to protecting yourself and asking for and getting support for those little tasks is vital. I wish you well. Something you might explore when you're back on your feet is how diet can affect RA. Be careful and research it using only scientific links as there's a lot of rubbish out there. But, personally, there are certain foods that make my RA flare up. Good luck, you will feel better, I promise, a lot of us have been there xx
yes my back has gone at the moment. I think it's because you use your whole body very differently when you are in pain from RA. Lots of good advice in the replies to you but mainly : 1 - everyone is different so what works for one person doesn't for another. Keep pressing for a change in treatment if something isn't working. 2 - keep a full written record of all your appointments and who you saw, and when you started and stopped each medication or when you received a treatment like a steroid injection. Because when you ask to have your meds reviewed, it helps to have this information at your fingertips. Don't think anyone has mentioned this and it's so important. Good wishes
Ask about steroids for the inflammation. You will be ok,
Hello Anne Marie
There are lots of great replies above about the length of time it takes for your prescribed RA drugs to kick in and reduce the inflammation.
In the meantime, if your pain is unbearable - which it might be, there are other painkillers you can take on an ad hoc basis whilst you wait for your DMARDS to work.
You might have to press your rheumatologist or GP for access to these painkillers. These drugs are not great, but they will take the edge off the pain if you're screaming in agony. I suffered for a couple of years before I learned I didn't need to. Nobody should be in the type of pain you can get with RA without access to effective pain relief.
I was prescribed Oramorph, Tramadol and Paracetamol. I had to press the GP very hard so he understood how bad the pain was. I don't take any of these drugs anymore now my treatment is effective, but I feel very strongly that people new to RA know that there is relief at hand if needed. Hope you feel better soon....
I totally understand.. I have bad days every day. Everyone is different. I finally tired of meds not working Andi am now on cbd oil. It's amazing! It doesn't destroy your kidneys or liver and you have no side effects.
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