i've been newly diagnosed and in lots of pain - help?

i am 26 and have been in pain for approx 4 months - been diagnosed with RA and on sulfasalazine and had a steroid injection to help with the pain.... the problem is, is that i am still in pain - saw gp and got signed off work for 2 weeks and been given naproxen and co-codamol... but im still in pain - particularly my wrists and forearms.... my rheumy appt is on 19th june - any advice or help will be much appreciated!!

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  • Hi Emsy - poor you and welcome to the site - hope you find it helps you to be on here at least.

    Sorry you are having such a horrible and painful time. The Sulfasalazine may not be enough on it's own - you may need another DMARD to be added in and it would probably be Methotrexate (MTX) which is the most well tolerated and most effective of the disease modifying drugs for many.

    The 19th June will come round soon and hopefully you will be able to get more medical advice and probably start another medicine. It is trial and error with pain killers and NSAIDs and some people need stronger pain killers such as Tramadol so go back to your GP and say it's not enough to stop the pain.

    Make sure you record any swelling and make a note of which medicines and treatments seem to help or not. I really hope you feel better soon - you are young and it must be terrible for you to learn you have this disease - it was bad enough to start when I was 48. But there are younger members than you are on this site and I hope you will find it really helpful as a source of support and information so do keep coming. Tilda x

  • Hi you poor thing and at a young age ... i started off on just salaz for about 6 months and then they added MTX ... i also take tramadol for the pain ... thursday i had a steroid injection they say it can take up to 48 hrs to start working ... i was told by my rheumy that to take paracetamol three times a day and if necessary take ibroprofen in between and a couple of tramadol at night before you go to bed because i was just taking painkillers when i needed them and she said they dont work properly like that .... but always best to ask your doctor before taking anyones advice ... give him a ring

    But once they start you on a combo of drugs it will get better ..

    i kept having time off work too and i hated it but they will need to be patient with you .... and the sad thing about it is no one understands the pain unless they are going through it .... but you will get lots of responses from some lovely people on here to reassure you because we have all been where you are now ..

    wish you the best

    debs xx

  • thanks for the welcome and the advice - i just find it frustrating - firstly as i am young, but also because i am a teacher - i cant quite fathom how to work like this!!

  • Hi emsyb, it is a horrible thing to experience, this pain is like nothing on earth, we all understand how much you are suffering. However, while the RA meds take a few months to kick in, you really need a better mix of painkillers. Paracetamol and naproxen and added to that a stronger one as well. Tramadol, codeine are all reccomended for this pain. I take 60mg codeine regularly for pain and it works well. Without pain relief you are going to struggle with work and life in general.

    Make an urgent appointment with the GP and tell them exactly what you have written above, make sure the GP understands the level of pain you are in and how it is affecting your life and the difficulties you are having. If she doesnt offer a stronger opiate based painkiller question her on the RA guidelines for your PCT. There will be a protocol for her to follow and dont be pushed about.

    Good luck honey. There is light at the end of the tunnel, you sometimes just need a huge torch to help!

    Love and hugs, Petra xxxxxxxxxx

  • Hi, sorry that you are in so much pain. I've found that holding my wrists under cold water helps me, or a bag of frozen peas. Others find heat helps them, we are all so different.

    Co-codomole didn't do much for my pain whereas tramadol 4 times a day definitely helps (plus paracetamol and a steroid injection) so it really is a case of trial and error. Also, have you tried a support bandage on your wrists? I found this also helped me.

    Judi

  • i have tried the bandage and that does help - is it ok to take the painkillers this often - im usually so anti-pills but i suppose that attitude has to change!!

  • Hi emsyb, sorry to hear that you are suffering. It must be hard being so young and a teacher too. I imagine that means being quite active at work, carrying resources etc? I wouldn't worry about taking painkillers often, the main thing is to feel better. Chronic pain is so debilitating and depressing. Just make sure that you don't exceed the maximum doseage and, like everyone else has advised, take them regularly for maximum effect. Hope you feel better soon.

    Carole

  • yep being a teacher is hard - especially when our head teacher doesnt like you to sit down too often - but too much movement results in a flare up. thanks for the advice and all the support - i really think i have turned a corner since putting this post on yesterday :)

  • Hi - only comfort for you is that we've all been there! The frozen peas wrapped in a towel is a great way to reduce inflammation and then heat afterwards for the pain. I couldnt tolerate co-codamil - made me feel sick and whoozy! Like a cheap drunk!!

    The meds take a while to get into your system, so try to be patient. I had steroid jabs in my knees when i first got diagnosed and did help me. Before i got onto MTX I got an intramuscular shot of steroid that lasted 6 weeks as i was flying to to Caifornia for holiday and needed something to tide me over before i got on my meds. At your appt in June, see if you can get one of those shots as really did put a spring in my step!

    Even if you are in pain, try to do gentle stretches to keep your joints limber. Also being a teacher is obviously stressful and stress makes RA worse (I'm lucky to have retired 18 mos ago and noticed how much better I feel with no work stress). So, try to get meditating, or some way to keep calm and try visualising your body with no pain - it does work, but I'm no good at it yet, still trying!

    Hope the appt in June gives you some answers and some relief.

    You aren't alone!!

    Lynn x

  • Hello emsy

    I am so sorry about your diagnosis and your ongoing pain. One of the most frustrating things about early RA, in my experience, is that it can take a while to find out what meds suit you best - and the meds can take some time to work. I seem to remember that Sulphasalazine can take up to 12 weeks to start to help once you are on the full dose, and it is not unusual for people to be on a combination of DMARDS.

    On a practical note re your wrists. Have you tried anti-inflammatory gel? In the early days of RA I used to sit and cry from the pain in my wrists but I found that using anti-inflamm gel and then wrapping my wrists in tubigrip did help to take the edge off the pain. I used to use max strength Ibuleve gel but my GP now prescribes Piroxicam gel which works better for me. Do check with your GP or pharmacist before trying this though since you are already taking Naproxen. Your GP might also be able to prescribe a different anti-inflamm for you and, again, you might need to try several before you find one which works for you. Naproxen didn't help me at all but I find that Diclofenac or Meloxicam do help.

    Finally, when you do see your rheumatologist, I would suggest that you ask for a referral to an Occupational Therapist, who will be able to talk to you about ways to manage - and who may decide that wrist splints are appropriate for you. Pretty they are not, but I have always found them a tremendous help when my wrists are very inflamed.

    Really hope things impove for you soon.

    Tillyxxx

  • Pressure your GP for better pain control. You should not be having so much pain so please do keep on nagging him/ her.

    Glad to hear you are seeing your consultant soon and hopefully he/she will put you on more effective medication. I was in the same position until I was put on etanercept.. Many good wishes

  • Hi Emsy

    I hope the GP will help get your pain under control, but you might also find our article on pain management useful as it has some self-help tips as well as information on pain and painkillers:

    nras.org.uk/about_rheumatoi...

    Kind regards

    Victoria

  • Hi Emsy, Sorry to hear that you are struggling with the pain.I have found that the frozen peas or an ice pack,alternating with a heat pack ( a wheat pack ) in the microwave gives great relief. You need to keep on top of your pain with regular pain relief, that is the trick for good pain management.A combination of drugs works for me with antinflamatory drugs Etodolac or Lodine.. Good luck. Carole I also take 20mgs metotrexate and recently had a steroid injection.

  • I am pretty new to treatment been developing a plan that works for past 6 months, I have had Ra since 1990 and now am getting treatment for it, All I can say Firstly Welcome, UI have found everyone here to be so helpful, and such a Blessing, For myself, until they got loads of results back, I was given Pain meds that did not wrok, So I am now on Oxycontin, extended relief 12 hrs every also Quick release, as needed, Also Paracetamol/Tylenol (in States) is good for Pain relief where Ibuprofen Is an anti inflammatory, Also I have been doing loads of research on Foods that cause Flare, You could research this But u would be surprised at some, Potatoes, Tomatoes, Aubergines (all nightshade Veg) Dairy because our bodies do not assimilate the calcium properly and actually causes more flares and problems, All Citris fruits, Hence also Tomatoe, the acid vs Alkalines, If you google or go to the NRAS website and search foods, you will find more, I suggest Boots Web MD site also, as I trust these sites more than others. Hope this helps a Bit, and Hope you get things under control so u dont suffer too much

    Lisa ((hugs))

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