First post. I’ve had RA for 15 years now (I’m 36). Have so far tried cimzia, humira, Benepali, rituximab and tox infusions - some worked for a short while, some not at all. I have been on prednisolone since I was diagnosed at varying doses - sometimes as low as 1mg a day but currently on 10mg daily and haven’t been below 5 in a couple of years.
I am now into week 3 of Olumiant/ Baricitinib but so far have not had any let up in symptoms.
The pain is becoming increasingly unbearable. I was taking co-codamol 30/500 but recently switched to tramadol and neither really help. They take a slight edge off.
I’m a teacher and back at school full time but I’m really struggling. Everything hurts, I’m exhausted and I just want to cry.
Do any of the stronger pain medications come recommended? I would need to be able to drive/ function as a teacher which worries me.
I’m just at the end of my tether. This is the worst I’ve ever felt and I see no light at the end of the tunnel. My partner is currently out of work so we need my salary to survive but I just don’t know how I can carry on like this.
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Bizzita
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Oh my darling i wish i could say something that would help you my sweet. The only thing i can suggest is keep on at your rheumy consultant. Hugs darling.xxxx
It's strange how some of the biologics start to work for some people.I have also tried 3 and now on 5th week of my fourth...Baricitinib so hope it works for both of us.do you have a DMARD with it? Pain meds I take are Pregabalin. Couldn't function if not on that along with prednisolone and sulfasalazine. I did ask for morphine patches but was refused.all you get from doctors is give the new med time .
The slow release Tramadol may be better as it lasts longer but I must be honest I can’t take it as it messes with my head and makes me tearful. I have oral morphine when it gets bad but it makes the pain distant but doesn’t go away. Are you on any anti inflammatory medications at all. Etorocoxib (so?) is quite good. Perhaps a trip to your GP is in order and a referral to Rhumatology again to sort a different med. Hope this helps xx
Thanks all - I’m also on Naproxen but again, I don’t really feel any benefit.
It’s so frustrating because I mention pain to my Rheumatologist (or usually the nurse) and they always say see your GP... the GP always then defers to rheumatologist so I rarely get anything done!
I have a follow up with Rheumatologist/ Nurse on 1st Oct so not too long to wait I suppose but it’s so frustrating because my inflammation markers are never really high so they always dismiss the pain.
Hi my markers are never really high either but I have a lot of damage to the joints of my fingers and wrist. My rheumatology nurse said it was because most of my damage is to the small joints. (Fingers wrists ankles) x
RA - the disease that keeps on giving - is a nightmare to live with and chronic pain is an insidious debilitation.
What makes it worse is it sounds to me that you are just being passed from pillar to post with no-one really taking ownership of your wellbeing.
Maybe that's what you'll have to do, by ramping up your 'demands'. When you see the nurse in October ask for her email address so you can keep her informed of your progress (or lack of) and then keep badgering. It is not OK for them to keep fobbing you off - it's their responsibility to a) get the level of disease activity under control and b) ensure you have adequate pain relief.
See your GP and ask for a referral to your nearest Pain Clinic; at the same time it might be worth discussing changing your rheumatologist - sometimes people post their location on here asking for recommendations, because it's really important that you feel you have the support of someone who's fighting your corner and it doesn't sound like your current team is doing that.
One medication that really helped me is Amitriptyline which is often given for nerve pain (which I get from repeated outbreaks of shingles as a result of long-term immunosuppression). One of its other uses (in higher doses) is as an anti-depressant and I take it last thing at night as it sends me to sleep. Somehow through this mix of qualities it has really improved my quality of life - maybe it's just because I get a really good night's sleep every night, or it's the pain-killing element or a build-up of light anti-depressant, I don't know (or all three!) but it really has made a difference and might be worth a try.
I do know that pain/depression is a vicious circle and can really take you down if you don't get on top of it. You are young, with a lot of 'working life' left in you and there are a lot of really good pro-active practitioners out there - just take the lead and set about finding yourself one. Good luck X
Interesting that you don find the naproxen useful, I have always found NSAIDs (usually diclofenac) to be the most effective type of drug for RA type pain. Way more effective than morphine for example.
If the naproxen isn’t working I wonder if it might be worth looking into different NSAIDs? They aren’t great for you, but needs must and all that.
Just got back from the GP - as a short term solution he’s prescribed slow release morphine (Zomorph) tablets, but will look at bloods when I have them done next week and liaise with consultant.
At least I feel like I’ve been taken seriously this time, although it took me breaking down in tears for it to happen.
My goodness me thats tough I don't know about any really strong pain medications myself but my mum had morphine patches as she had spinal fractures. She managed a better life on them without any bad sise effects as far as i know so might be worth asking about them. I hope you do find something soon and my sympathy to you in such horrid pain.
I do really sympathise with you, RA is a wild untamed animal of a disease. You say you're a teacher, teaching right now, in today's world, here in the UK, is just about the most stressful profession you can undertake. I was a social worker for Children Services and I found my pain levels rose exponentially in sync with my stress levels, I also saw first hand the intorarable stress that teachers have to cope with. You could somehow look at trying, combining your pain drugs with reducing your stress level, tall order, although if you could reduce your stress levels it may help you in reducing and manage your pain. You could also talk to your GP about alternatives like Cannabis oil seems to be working for some. Like others here I think if you speak with your GP and discuss your options. I wish you the best (hugs).
Thanks - it’s incredibly stressful. In fact, I was signed off at the end of last term for 5 weeks he to stress/ anxiety. I’m seeing a therapist and am on meds which are helping - I think I’d be in a much better place mentally if I wasn’t find the job near impossible due to pain. It’s never been this bad before and never impacted by ability as a teacher. It’s a vicious cycle and I keep saying to myself if I’m like this now, at 36, where does it end?
don't look to far ahead Bizzita, that's what I think gets us all down looking ahead when were down with pain wondering how bad we will get in the future.
but what helps me is-we can only live one day at a time moment to moment
let tomorrow take care of it self.
the things we fear never really happens in the way we think they will.
so just take today, one step at a time
I mean this is a kind way ,its what helps me get through the horrible days we have
Just thought I’d update you all - the morphine is starting to kick in and the pain isn’t quite as unbearable. The stiffness is still there and I’m hobbling around the place with a bit of difficulty but I’m much more upbeat now. The main side effect for me is intense sleepiness 3-4 hours after I’ve taken the morphine (they are slow release).
Glad the pain has eased a little. Morphine makes it a little distant but it’s still there. It’s tough when you’re the main earner for the family too. I’m an accountant.. my husband has a factory job and I have 3 children so there’s no way I can’t work and it puts an added pressure on you which I dibs think helps with the pain/fatigue. Be kind to yourself and realise it’s ok to sit and chill when you can. xx
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