NRAS

PAIN

Hi All

I'm not new here, just haven't posted but been reading for quite some time now.

I worry as I am able to find similarities with so many posts.

I was diagnosed with RA about four years ago and it isn't under control as yet.

Bottom line is that I have tried various meds but nothing has put this awful disease in remission. I'm 47 but feel about 97! I was taken off Leflunamide about 6 weeks ago as my liver function is not what it should be. I've been taking it for about 3 years. I didn't realise how much it helped until I stopped.

My pain has gone through the roof in the last few days, my pain has always been bad but I have managed to cope with strong pain relief (advised and prescribed by pain clinic) which normally takes the edge off the pain. I'm currently on Tapentadol SR 100mg x1 and 150mg x1 at night, mixed with Pregabalim, Ibuprofen and Codene.

I do not know what to do with myself, the pain is so bad.

When is enough pain enough? I feel as though I should be in hospital or something. Does that sound ridiculous?

10 Replies
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Hi--- no other doesn't sound ridiculous--- that's a very good description actually. Did your rheumatology team not offer you another dmard or a steroid injection? 😊

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Hi Mich-1

So sorry to hear that you are in such a bad place right now. Are you in the UK and have they tried any of the biologicals yet?

I was first offered Humira and Embrel in 2009 and 2010 I think, but to get to the point where I "qualified" for them I had had both hips and both knees replaced in less than 3 years.

Sadly neither of them worked for me and when I discovered the cost to the NHS I decided to opt. to go back on Leflunomide. I am unsure if it was the Embrel or the Humira, but I had fortnightly injection, which put me to bed for the next 10 days.

Until recently I did not realize that only 10-15% of us in the UK are even offered biologicals. Pretty much only then because we have significant skeletal damage, very active disease and all else has pretty much been tried.

I do hope that with the new "similars" bringing down the cost significantly that more suffers will be offered biological.

May things improve for you very dramatically and very soon.

AARA

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Thanks so much for your reply Aara

yes, I am in the UK and have tried 2 biologics.

I've just asked my GP to do a referral to a centre of excellence.

I've been with my local hospital in Croydon for some time now without any remission.

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Hi Mich - If your pain is that bad, I would recommend you either get to your doc or to the ER. That is no way to be, and the pain can get excruciating.

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Hey CareyIUSA

I seriously contemplated attending the A&E Department over the weekend but I didn't go because I would just get sent away and they wouldn't be able to do anything for me. Hospitals are usually full of drunks and fighters as the weekend. It would be an uncomfortable long wait.

GP will tell me to up my pain relief which is the right answer but I need to be able to function as a mum and not be a zombie.

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Yeah - there is a very fine line there between functional and sorta pain free and ZomMom.. But I do think it is really hard to move much if you hurt that much. Here's hoping for relief soon..

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Do you have a rheumatology helpline that you can contact for advice - or can you put in an urgent call to the pain clinic who might be able to advise your GP on steroid injections/medication?

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HI ITYFIALMCTT

I have just contacted the hospital and I have a telephone appointment with a nurse tomorrow:)

I have also chased the centre of excellence for an appointment and I am seeing them on Thursday!!!!!!Wow, I cannot believe my luck.

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Hi Mich-1

Delighted to hear that your hospital is listening to you. There are times when you are just so desperate, or so frustrated by the way the "system" is not meeting your needs that you need to think outside the box.

There was a time when I was my Mother's main carer, and she was just not getting the support she needed from social services. I was just utterly at my whits ends. At the time I was dragging myself out of bed to go and attempt to do for my Mother, the self same tasks of daily living that a carer was coming to my home to do for me. Crazy or what?

At the time both my own and my Mother's health were deteriorating rapidly and my Rheumy Consultant kept saying that I might improve if only I could figure out a way to reduce my stress level.

The only way I got the social worker to listen to me was to say that if we did not get more help and soon I was planning to abandon my Mother in her wheelchair at the local A and E. I had actually given it serious consideration. I am still not 100% sure if I would ever have carried out my threat, but I just did not know how else to get the help my Mother so desperately needed.

Hope you get a really good outcome from tomorrows appointment.

AARA

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I know from experience its really difficult to get to a GP when you are in so much pain and often they do not have as much knowledge as your rheumatologist. I've been through a dreadful flare this year that only ended when I was given a steroid injection but that is now wearing off. I'm on rituximab but that doesnt appear to be working and will have to wait until my next appointment before anything will be done. In the meantime I often feel I'm left to suffer. Can you phone the rheummy nurse or rheummy and let them know how much pain you are in?

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