Acute pain: I am currently in Acute pain and have been... - NRAS

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Acute pain

CaroleB54 profile image
16 Replies

I am currently in Acute pain and have been for the past five weeks, I contacted my rheumatology nurse two weeks ago and the earliest appointment is for the 31st of this month. I have tried ice, heat.rest heat and rest and the pain is getting worse.

I had to ring 111 on 13th and a Dr gave me oramorph which does take the edge off the pain but my GP is refusing to prescribe it. I was wondering if anyone else has gone through this and if so what have you found that works. I am on a multitude of meds among those are Sulfasalazine and Methotrexate and getting no relief.

Any advice would be gratefully received.

Thank you.

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CaroleB54
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16 Replies
Hessie5 profile image
Hessie5

Hi - sorry to hear of your pain. When I was in unbearable pain, my Rheumy would provide a course of prednisone to help - the pain I was in, I was grateful. I hope you find some relief soon. Do speak with your Rheumy team. Take care - 🌼

CaroleB54 profile image
CaroleB54 in reply to Hessie5

Thank you so much xx

I can absolutely understand your GP being unwilling to prescribe oramorph, particularly if the cause of the pain is most likely RD. Corticosteroids are often the best pain relief for arthritic flares, with oral steroids being good for widespread pain, and for a lot of people, the only effective option: they’re only thing that currently help me to any meaningful degree. My disease is uncontrolled and I’ve been in pretty severe pain daily for the last 6 months with the exception of the 3 longer courses of steroids I’ve had in that time. Rheum don’t need to see you to agree steroids, so I’m surprised that they haven’t suggested this in the interim given how much pain you’re in. Whilst they’re not drugs to be taken lightly, and they should be used at the lowest dose possible for the shortest time possible as a result, the worst case scenario would still be a positive overall; if the steroids didn’t help, that would at least tell you the issue isn’t inflammatory.

It might be worth ringing rheum again and explicitly asking them about a course of oral steroids to tide you over? A week is a long time to be in severe pain.

CaroleB54 profile image
CaroleB54 in reply to

Hi Charlie thank you for that! I spoke to my GP and his suggestion was Naproxen, the only problem is I've had them before and it didn't help at all. I'm reluctant to take them as he also wants me to have a blood test to see what the inflammation markers are, if I take those they may not show just how bad the inflammation is at the moment. I asked about steroids and he said he wasn't keen and it was up to the rheumy team to sort that out! I'm at a total loss with my GP practice at the moment to be honest but I see the team on Thursday coming and guess ill have to

CaroleB54 profile image
CaroleB54 in reply to CaroleB54

I will just have to see what they say, but my rheumy nurse did say my meds would have to be looked at again. Take care and thanks for the reply!

Oscardoggy profile image
Oscardoggy

Hi, sorry to hear you are in so much pain. I know exactly how you feel. I would contact your rheumy team again via the help line and politely suggest a course of Prednisolone. I’m surprised she didn’t suggest this. This is the only medication that helped me when I was in unbearable pain. Good luck.xx

LakesideDave profile image
LakesideDave

I've been on Sulfasalazine since 1993 . From day one I've had a pain killer and anti-inflammatory to run along side. These have changed over the years. During flare ups Steroids by injection if needed.Currently on dihydrocodeine and diclofenac which keep me comfortable, as long I know my limits .

My Rheumy Nurse Practitioners are worth their weight in gold. Don't worry about speaking to them , I've found them very helpful and understanding.

Good luck, Dave ....

CaroleB54 profile image
CaroleB54 in reply to LakesideDave

Thank you for that Dave xx

Evie3 profile image
Evie3

Poor u. Before my RA was under control my GP gave me a shot of Depomedrone in my backside…..gives a bit of respite. No one should b in acute pain in this day and age. Hope u get sorted xx

CaroleB54 profile image
CaroleB54 in reply to Evie3

I'm sick now this is going into week 6 now, I'm at the point where climbing the stairs is very painful and even walking around I feel like I'm walking on glass.Thanks for your reply, take care xx

Evie3 profile image
Evie3 in reply to CaroleB54

Keep rattling those cages…..Doctor…RA helpline….its the weekend now that doesnt help. Do u have Livi in your area? They have helped me. U take care x

CaroleB54 profile image
CaroleB54 in reply to Evie3

Hi Evie, I certainly will. I don't think we do in our area. If I'm really bad again this weekend my sister will sort things out for me, she won't let things slide. Take care xx

Evie3 profile image
Evie3 in reply to CaroleB54

Well done your sister👊

Clare-NRAS profile image
Clare-NRASPartnerNRAS

I am so sorry to hear of you being in so much pain. If your appointment for rheumatology wasn't a few days away I'd suggest insisting on a steroid injection for that amount of pain however getting one now would only mask what is going on when you do get seen in rheumatology on Thursday. A key thing for when you go in is to insist they do a DAS28 score on you and if it is over 3.2 they most definitely should be talking to you about moving onto more targeted therapy i.e. biologic or JAK inhibitor. Have you had a recent blood test? Do you know if your inflammatory markers are up? I might also suggest if you haven't got the Know Your DAS app to download it knowyourdas.com/ and conduct your own self assessment DAS before you go into you clinic or if you're not keen on an app to do this you can check out the resources for patients remote monitoring developed by Uni of Manchester at this link sites.manchester.ac.uk/remora/ Going armed with some good data and details of what you've been going through will really help your rheumatology team to help get you back on track as quickly as possible.

You may also find the SMILE-RA module on managing pain and flares useful nras.org.uk/selfmanagement/

Once they've done your DAS score in clinic I would suggest you insist on some immediate pain relief such as a depo jab. I am assuming you are taking your maximum pain relief as prescribed...taking even paracetamol at regular intervals can take the edge of at least. Talking to your pharmacist may be worthwhile as they have a better understanding of interaction of medications. The pharmacist not the counter staff I mean.

I have everything crossed for you to get some swift relief.

CaroleB54 profile image
CaroleB54 in reply to Clare-NRAS

Hi Clare, thank you for all the information! My sister is a nurse and she advised me to come on this site as I would find it helpful, I have to say it is very informative and I'm pleased I joined! My sister also suggested that I know my Das score and was also on about the medications etc that you mentioned. I take 500mg paracetamol tablets for times a day, I'm also on Zomorph, Gabapentin, Duloxetine 90mg,Mirtazapine 45mg as well as I also suffer Fibromyalgia, osteoarthritis and have degenerative discs.

I know I have a lot going on and just wish it was the 31st so I can see my rheumy team.

Thanks for all the information, take care xx

PrTm profile image
PrTm

Hi when I was in a lot of pain my Rheumy nurse rang my GP to request a prescription for Burophen patches (that may not be correct spelling) basically a 7 day pain patch ...it helped immensely Hope you get some relief soon

Take care

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