NRAS
21,731 members25,375 posts

The pain

Before I started my treatment I was in a lot of pain with RA and thought what is it going to be like living with this. Then I started my treatment but after a month or so I didnt feel much difference in the pain. Its been about 6 months since ive been on the pills and I still get the pain but a dull pain all day everyday. Any pointers people ?

37 Replies
oldestnewest

Hello Jade :) I have had a very similar experience to you recently as I have just started a new Anti TNF drug which Im not 100% sure is working. I raised my issues with my consultant and they told me to hang on a bit and not give up becuase my bloods were improving and this particular medicine takes a while to work. My pain is now gradually improving but its not 100%.

We all get pain everyday but it will differ in how much it hurts. I get a dull pain most days also! I would suggest you maybe speak to your doctor or consultant about your painkiller regime. I have to take painkillers at breakfast, lunch, mid after noon and just before I go to bed in order to help me and help me sleep.

At the moment it may be a case that they havent quite got your medicines right. Make sure that the next time you see your doctor or consultant that you tell them everything that you are experiencing so that they can get it sorted.

My best tip would be though not to feel down about it all :) Iv been through exactly the same and I 100% agree that it can be difficult but Iv always found that if I find something to take my mind off it (like thinking about xmas presents of something silly like that) then my pain will ease :)

I hope everything improves for you and make sure you speak to your doctor/consultant!

Keep smiling,

Em :) x

Reply

Hi Jade,

Me too! I started Abatacept just over a month ago and the pain just got worse not better and I was not in a good place. However, my Rheumy persuaded me to have another one (on Friday last week) and I feel so much better. Pain hasnt gone completely and I'm still quite fatigued, but I am sleeping better too.

I agree with Em, try to take your mind off the pain, I read constantly. Getting into a good book can help. Also, it takes a while to get the right combinations of drugs. I have tried quite a few in the last 6 years. Rituximab worked for a while and then not so good. Otherwise I am on injected Methotrexate, plaquenil and 15mg steroids (which hopefully I can now reduce).

Hope you feel better soon.

Claire

Reply

heylo,

hope your pain is not too bad today, im in the same boat-on inj mtx since march-before that i was on the tablets for a few wks but had very bad reaction. 9 months later and still in pain (manageable) with mini flare ups- i initially thought that the drugs would make me pain free and backk to the way i was before i was diagnosed with r.a but unfortunatly not- i think you need to see ur rheumy as they can add a variety of drugs that work in combination together with the mtx or whatever ur on-thats what im gonna do! also, when i was very bad i would be on tramadol, oramorph and oranorm at night, this was a bad idea as after 9 months on these drugs when the bad pain went i had to try and come off them and thats a whole other kettle of fish! (bad times!)so be wary of the doctors throwing drugs at you-! have u tried homeopathy? massage is always good, and i tried swimming a few times (if i was having a good day) and a little walk always helps 2.....the jacuzzi in the swimming pool was great for the pain :) hope you have a lovely day xxx

Reply

mmmm, I'm the same....still in pain, everyday.....continuous, and then sharp pains on top with certain ovements of certain joints.....its affecting my sleep too now :-( i keep asking " when is this going to get better" and keep being told, give it time....my drugs have been juggled around a bit....no difference!! still waiting.....! I've been advised to take paracetamol regularly everyday, but it makes no difference. I look well and no one seems to think I have pain there....I keep smiling, but I'm starting to get fed up with that mask now!! Maybe my expectations are too high!? I can't bear to think that I have the rest of my life to live like this...I'm only 35 :-(

sorry for whinging!

Hope you get some relief soon x x x

Reply

Hi Beeper here, sorry you have so much pain and are feeling down. I have had RA for some 15 years and had two hip ops and a shoulder op. I have my meds changed a few times, I am in pain everyday but the best way I have over come the pain is by taking my mind of it. I know it may seem hard but after a time you can control it, yes I do take a few pain killers from time to time but try not to depend on them. Your mind is a powerful thing. One way is when I go upstairs and feel pain I thing of different things like what I have to do tomorrow or the words to a song, anything to take my mind of it. I try to keep busy, reading, writing or watching tv. When I worked that helped now I am off work it is a bit harder. You have to alter your life style to suit the new one you now have but it is worth living so chin up and look forward not back.

Reply

ive been to my consultant a few times explaining what is wrong and what is right but she just keeps saying give it time and sometimes i think how much time do i have to givve it?? im on Methotrexate, hydroxychloroquine and folic acid, i also take ibuprofen and paracetamol when needed :/ im just fed up of taking so many tablets :/ half the time they make me feel worse but taking them rather than better. ive been ill constantly for the past three months and my consultant still aint gonna do anything for me, i have problems sleeping as well, ive had about 30 hours sleeep in the past week :/ not good when i have to go into college 3 times a week.

i do try and keep my mind of the pain by reading or doing my course work or by watching tele but sometimes i get stressed out with doing these things because it hurts my hands to type or write i can never get into a comfy spot where it dont hurt and im just so ill all the time its what i think about everyday all day.

the last time i saw my consultant though was in september but i aint got an appointment till january now because they are busy :( even when i talk to her she just says to wait and be patient but she dont know how hard it is to wait a be patient when your 18 and want to live a normal life.

yes ive had to change some of the things i do so that i adapt around it but it still is very hard to get used to it all. so thank you all for the advise and ill keep on trying to look on the bright side and i hope all of you are well today as i wont to be here for all of you just like what you have done for me :D xx

Reply

Hey :) Have you tried some stronger painkillers? I take paracetamol etc but also have to take codeine which seem to ease the pain a bit more and they help me sleep! If you cant get in touch with your consultant then try and speak to a rheumatology nurse ? If you are unsuccessful with that then I would suggest that you go and see your GP as soon as possible because its not right that you are in so much pain when there is something that can be done about it.

Em :) x

Reply

well i would take codine if i wasnt allergic to it :/ and i have my rheumatology nurse's number but she is no help :( i have but all they say is to wait till you see you consualtant :( no one seems to help that much apart from my mum :/ x

Reply

There are other pain killers and inflammatory based drugs such as naproxen, diclofenac etc. If you are in that much pain then your rheumatology nurse/consultant should NOT be ignoring you. You need to make sure that you keep ringing. Also your GP should be able to prescribe you something short term that will help until you see your consultant. My Mum is a big help when Im in pain too, she rings the hospital and so do I so that they understand how much pain I am in. I feel you really need to keep persuing this Jade and get your pain under control before it gets any worse!

Em x

Reply

i know that there is i use to take diclofenac but it made no difference and half the time they just say just stick with the painkillers and that because they will work but they dont, well sometimes they do. on my good days i can cope with the pain but on my bad days i just feel like giving up but i dont because my mum helps me. thank you for all of this advice :) its been great :)

how are are you if you dont mind me asking ?? and when did you get diagnosed with RA ??

Jade xx

Reply

I was diagnosed just before I turned 4 and spent my 4th birthday in hopsital. Im 18 now so have had my arthritis for about 15 years. My arthritis effects every joint in my body. Iv also recently discovered that I have osteoarthritis in my ankle which means the joint is wearing away due to excessive active arthritis. My hips and wrist also have some erosion on them so it looks like im going to be getting hip relplacements and an ankle replacement all before Im 21! Iv been on lots of different medicines, all different types of anti TNF therapies, lots of steroids, methotrexate in both injection and tablet form and have tried nearly every pain killer you can think of and I take all the supplements too including folic acid. Im coping okay at the moment but iv had quite a difficult year due to lots of changes in my medicine which have affected me physically and emotionally. Things are looking up now but theyre not 100%. I just try to keep smiling and keep busy though because there is no point in me being upset all the time about something that I cant change over night ..

I really hope that you can get your pain under control and that it is not left for a few months to get worse because thats what happened with my ankle. I informed my consultant about the pain in april and unfortunately it has got worse over the past few months and is now going to result in possible surgery which could have been avoided. I would urge you to keep trying to contact your consultant or make another GP appointment and take your mum with you to explain your situation fully. They should then be able to give you some short term relief.

I know what its like living with dull pain everyday .. it effects my mood etc and therefore has an impact on others around me but by keeping my mind on something else, it eases the pain slightly (if that makes sense!)

I hope you get sorted and I hope that helps a bit ??

Em :) x

Reply

OMG really that is so sad im sorry about what you have and still go through .... i cant believe it has done and effected you so much now i feel lucky just to have it slightly (for now) but i have been having problems with my hips this past week but i wont fine out if its to do with my RA or not till 6th january :(

ive just come back from the doctors and they have given a load more pills to help me like;

Omeprazole - to settle my stomach so i can eat hot foods more as ive lots my apitite :(

Diclofenac sodium - to help with the pain along side with pain killers

Piriton - for my sleeping problems even though it is for allergy's

Clarithromycin - for the chest infection that i have had for the past 4 weeks :(

these are just what i got today i also have to take Methotrexate, Hydroxychloroquine and folic acid :(

so hopefully all these will help with all the problems i am having :)

you are an inspiration to me now and its so sad to hear you have to have ops before you turn 21 :( i hope all the best for you :D

Jade xx

Reply

thats a nice little mixture of medicines for you ! Im on all of those and I am almost certain that they are going to make you feel better! Im really pleased that you went to the doctors and got this sorted out :) The pain in your hips might be to do with your RA but if you keep taking all your medicines and pain killers consistently then the pain should ease a little. Plus you cant be ill for christmas! :D

Im a bit upset about having to have some pretty tough treatment/surgery in the not too distant future but Iv just got to get on with it. What doesnt kill you only makes you stronger right ... ? :)

Im glad things are getting sorted for you :) Em :) xx

Reply

yep lol i told my friends and they laughed and said one day they will be able to shake me and hear all the pills in me :L and i only managed to get an appointment because someone canceled theres thank god :) and yer i know i love christmas so i dont want to be ill and hopefully i wont be but im scared about how cold its going to get because this is my first christmas since i got it so i dont know what to expect :(

and yer that is true so we have to keep our head up and just live our lives to the full :)

i hope your ok today :D Jade xx

Reply

aww youll be fine over christmas. Just make sure that you keep wrapped up warm so that you dont catch any horrible viruses and remember to keep moving! I always find that if its cold and I dont move as much then I get even more stiff :-/ My friends and family always say that about all my pills! i musy have taken about 10 or more already to day and iv got the next lot later! once you get into a routine though youll be fine :)

glad things are looking up! Em :) xx

Reply

heehee yer i get stiff a lot even when it aint cold lol i just forget to keep moving :/ but your right i just have to remember to do those things :) heehee bless ya its not nice taking lots of pills but like you said just need to get into a routine :)

they are and its thanks to people like you :D jade xx

Reply

Ask your gp to review your pain meds, he can probably help, though it is very difficult to a hundred percent pain free.. but he can optomise your pain relief x

Reply

ive tried that as well they just say take them for now :/ x

Reply

Hi

I hate the friggin pain, which is not to say other like it, but I mean it really gets me down.

I hope they find a combination or tweaking that helps you even more soon.

Keep up the good fight

Thinking of you Sci x

Reply

i get down alot because it stops me from doing some of the things i love :/ yer they say its going to take some time so ill just have to wait.

you too x

Reply

Hi

I've had RA for 7 years and i can't remember ever being completely pain free - i think i've now accepted this and have learnt to deal with itI don't think the pain means your drugs are working its just part of RA.I take paracetamol regularly and then top up with codeine when necessary.I have also got morphine patches for when i am really bad but try to avoid using these too often.

It might be worth asking for a referral to a pain clinic-they are really helpful in suggesting different options and strategies .Ask your GP or consultant

Reply

ok thank you for the advice :) was very useful :D hope your feeling better though x

Reply

Hey guys, so sorry everyone is in pain, sadly we have to learn to manage our disease through finding a balance between work, rest and play which, can be trial and error. Deciding whether to do something which gives us pleasure then suffering later or not doing something then feeling depressed because we feel we've missed out on something. We have to learn to manage feelings of uselessness or that we're not good mothers because we can't do things with our children. We may not be able to take part in physical tasks but we DO have lots of love and emotional support to offer our children/partners.

Our care team don't want to up pain meds unless it's essential, if they start us on strong pain relievers early after diagnosis it means they are limited in what they can give during flairs or as the disease progresses.

Care teams can be excellent with advice and offering different combinations of pain relieve (and there are masses of combinations), but we have to tell them and make sure they hear our voice.

I once got into trouble off my OT and GP when I told them I take my meds with 2 Tramadol then soak in a hot bath with a glass of wine. They weren't to happy but understood it helped me get some sort of pain relieve and sleep.

Sorry to sound off, but as someone in her 50's whose lived a life in pain I know how difficult it is and even today still have days where I lock the door to the outside world and cry my bloody eyes out. Yes I do feel very sorry for myself some days and grieve for what I've lost as my children grew up and the things I still want to do but can't

Sorry to go on but us older sufferers can offer a lot of advice and emotional support to younger sufferers, especially young mothers or people struggling with work.

Stay strong take control and manage your RA don't let it manage you.

Beth xxx

Reply

Beth when did you get diagnosed ?? if you dont mind me asking ... you have given me a lot of advice in what you have wrote ... i hope that when im your age i can say this to someone younger and have them apprieate it :) thank you :D xxx

Reply

Thanks Jade, I've had problems with my back and hips since I was about 11 but not properly diagnosed and medicated till I was 32 and 4 children later.

My back/hips are now knackered and I have whole body pain caused by Enthesitis, also kidney disease and very high BP. My then consultant told quite matter of factly, I'd be in a wheelchair at 50, thankfully I'm still getting around under my own steam (most of the time). lol

Auto-immune conditions are awful and sadly people (including family and partners) don't understand how we can be in so much pain or so ill when we look so well. This is definitely a well hidden disability.

xxx

Reply

omg really so you have been with RA for a long time now :( i am starting to have problems with one of my hips but i dont know if it is to do with my RA :( and yes people just dont know how we are and what we feel :(

xxx

Reply

Hi again Jade, I actually have Ankylosing Spondylitis which belongs to the RA family and treatment, meds are pretty much the same.

xxx

Reply

oh right ive never heard of that ... i never heard of RA until they told me i mean i know what arthritis is :) so how are you feeling today ??

xxx

Reply

Hi, not many people have, it mainly affects men and starts to develop in teens/early twenties.

Most people are quite happy in their own lives and it's only when disease hits them or a loved on that they look it up and are then stunned by the lack of awareness of the different types of Arthritis.

I've not been to good the last couple of days (think it's the depressing weather) nausea and aches are getting me down at the minute. Thank you so much for asking.

But hey ho have things to do and people to see so no point in feeling sorry for myself.

Hope you have a good day and stay positive.

Beth xxx

Reply

this comment made my day= I told them I take my meds with 2 Tramadol then soak in a hot bath with a glass of wine. So true!! xxx

Reply

haahaa i saw this comment :L so funny xxx

Reply

so true! but obviously not encouraged by the docs! ive tried to drink on tramadol and it was not good, but i wish i would have the option before bed to help with the sleeps! hope you get it sorted soon, i think you shuld go to your gp and demand to be seen sooner if possible with your rheumy- also ask for stronger painkillers- i had to go through 3 ones before i got the ones that actually helped, anytime you need to chat let me know as i feel your pain. im newly diagnosed last year when i was just starting my 2nd year of uni x

Reply

ha ha

NO, not recommended by the medical profession, but like I keep saying it's about what works for you. I don't drink very much these days because of the effects with the Leflunomide (feels like I'm hungover for days). But I still enjoy the odd glass of wine watered down with lemonade but 2 glasses and I'm gone.... But I do get a couple of hours decent sleep! lol

Stay strong and in control.

Beth xxx

Reply

heehee yer i guessed that lol and im trying to make an appointment with my doctor but its so chocker blocked that they dont have no appointments for two weeks :( ive been diagnosed this year in my 2nd year at college :( and im glad i found somewhere where people understand what i have to go through and its just so nice to talk to people about it xx

Reply

To Jade and Em and Laney and any other younger gals, it is very heartening to read your blogs and know you can share so much amongst yourselves. Stick to it! But also, keep on reading from us older, over 50 gals who've been with RA for so many years.

One thing I have learned and seen the results of...is try to get on the anti-tnf treatments, these will actually slow down or even stop the destruction of the bones due to RA. The sooner you can get to that stage the better. Then the pain is so much more controlled! All the best, God bless. Loret

Reply

Aww thank you for the great advice Loret :) i will keep all that in mind :) x

Reply

RA if your getting pain every day you need better meds morphine patch is a good.way to go it's dripping in 24-7 ask when your next at hospital or you can ask your doctor but if your being seen over RA at hospital ask the specialist they will write to your doctor I hope this helps you good luck & take good care of yourself. Ray Ossie

Reply

You may also like...