question for you all, what do you take for breakthrough pain? I’m on enbrel, methotrexate and flexeril. Take acetaminophen and ibuprofen and naproxen as needed. But my back is just giving me a fit the last few days. Been next to impossible to even move. I wrote to my rheumatologist to ask for tramadol (a non narcotic pain reliever) and she told me all she would write is prednisone. Which I cannot take with my anti anxiety med, it can cause seizures.
I’m just frustrated. I feel like we are left to deal with such excruciating pain sometimes without a lifeboat. And going to the emergency department is pointless. They won’t give you anything for the pain either. How do we make the doctors understand we are just trying to live as normal of a life as possible?
Just fyi I have AS, RA, fibro, and psoriasis.
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Ashley1014
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Hi my GP prescribes co-codomal for me and occasionally if I'm having a bad flare I can get a prescription of naproxen. I also take enbrel & methotrexate. I usually contact my GP as my 1st call I'd I'm struggling. Hope you get some relief soon
I will have to see what co-codomal is here in the us and if it’s an option for me. My gp/pcp will not touch my pain. She refers it directly to my rheumatologist
Oh lord! I'm sorry you have a doc like that! It makes such a difference when you have an understanding doc. I changed doctors after having RA for 6 months as they were useless. Thankfully my new surgery are brilliant!
My doctor used to be amazing. So compassionate and understanding. Lately she is just not herself. I’m wondering if Covid just burnt her out and I may need to change doctors
I just take a couple of paracetamol. I find gentle stretching and keeping moving works best for me.
I take hydroxychloroquine, I know some people get steroid injections for their pain and it’s been suggested for me but I want to avoid steroids if I can as I was given them when I was first diagnosed and ended up with steroid induced T2 diabetes which fortunately I managed to get rid of.
I avoid ibuprofen as I have osteoporosis and ibuprofen isn’t good for your bones and I also have osteoarthritis and bursitis. I’m always very creaky in the morning but stretching and moving pretty much sorts me out.
Why don’t you go back to your rheumatologist and see if she can change your drugs or as Haz58 suggests add another drug into the mix?
Oh yes I am not a fan of the injections either. Went down that road before the biologics. I do stretch everyday and try to stay active as I have four children so I am pretty busy lol. My rheumatologist will only add prednisone. But I see her NP when I go back in April and I’m going to ask her if she will do something different. My pain usually is pretty well controlled but every once in a while my back just acts up and lays me out. They like to tell us that if the pain is that bad to go to the emergency department. But then the emergency department tells us there’s nothing they can do for us to go to our rheumatologist. And it goes back and forth forever and ever.
Gosh, with four children I imagine you will be well exercised. Your doctor needs to get a grip and get your pain sorted out.
Magnesium is fine - I take it and also like to soak in magnesium flakes in the bath and I bought some rub on magnesium gel this morning, I’m a great believer in it - but it’s definitely not the same as proper pain relief.
You probably do need to try a different doctor or even a different rheumatologist.
I do have one of those. His method of pain management is magnesium. Which I have taken religiously since he prescribed it since he says it will help my pain. But I am not so sure about that one.
The only thing that helped my pain was etoricoxib, taken long term. I’m not on it just now as biologic mostly working for me. But when I need pain management it is streets ahead of any others I’ve tried (prescription only from my rheumatologist) x
First and foremost you need to have trust in your consultant and doctor. If you don't then this would be my first port of call. Once you find one you are happy with, you can then move forward with greater confidence in their ability to treat you properly.
I struggle with pain medication and so have had to find alternatives. I do a have a small dose of gabapentin at night before bed, but other than that I can't tolerate it.
Movement for me is crucial to keep my joints as best as they can be, so I do an exercise programme every morning. Even if it is a small amount of movement, do what you are able, with stretches beforehand and put all your joints through a range of movement that suits you. It will help with pain. Maybe try paracetamol, if you are allowed, but you need to speak to your rheumatologist about pain meds. I went to a pain management clinic at Walton and they were fabulous. I was referred by my rheumatologist. It was a six week programme and they give you a lot of advice in how to manage pain. Maybe ask about this.
Thank you so much for your reply! I should have mentioned that I do keep active and stretch daily.
I take tylenol(paracetamol) daily and now that I am out of a flare it has been working quite well.
I might look into a new pain management doctor as well as a new rheumatologist. At this point I guess it couldn’t hurt to try. I don’t want strong pain meds or anything. Just something to help me when I’m in a flare and my back has me unable to move. I have four kids and being unable to move just really isn’t an option.
It truly isn't an option is it with four children. You have your work cut out. Glad you are out of flare.Sorry, I missed that you took paracetamol daily.
Good look with consultants and future management 😊
No worries! I just bought the “arthritis strength” version of it that we have here in the US. It’s just a stronger version. I honestly don’t think it does a whole lot but maybe it’s the placebo affect of if I take these pills it’ll help my pain lol. After you’ve been in pain for so many years I think some of the pain you just kinda trick yourself into believing it’s normal.
Hoping the NP or your rheumatologist will step up to help you with pain. I am allergic to many medications so have limited options, but I’m thankful that Tramal works for me, and my doctors don’t question my need to have it on hand to use as necessary.
My rheumatologist refused to do even a scan to see if I injured my back recently as my lower back has been giving me quite the fuss. I have scheduled myself with a spine specialist on the 17th who is going to scan my spine and see about some pain management for my spine as it was already pretty degenerated when I had my last scan 10ish years ago
Feel for you. I had what seemed like a minor injury to my arm over the summer which led to a blood clot in my lower leg. I had some new back pain, mostly lower back, which was a new addition to previous occasional back pain. Finally saw a spine specialist in November who said the twisting in the arm injury had made previous degenerative spine issues worse and also caused new traumatic injuries. Next was urgent surgery from which I am still recovering. I guess it would have been helpful if I had spoken up sooner about my agonising back pain, but I find it hard to know how serious these things are and when to push for medical attention.
I am the same way. I originally thought my back was flaring up. Then thought oh it’ll be better in a few days. Then honestly thought my rheum would help. She gave me a dose pack of prednisone. So I tried it. It did nothing. So I asked her for scans and some tramadol for the pain. That’s when I came to you all because she denied me and I was frustrated. I’ve asked again for scans because I’ve clearly injured my back and she’s suggested physical therapy instead. So hopefully this spine specialist is the right choice.
Would definitely advise seeing a spine specialist as soon as possible. I waited too long. To give some credit to my rheumatologist, he was the one who, when I finally told him I was at the breaking point with the back pain, feared I had a compression fracture in my spine and urged me to see a spine specialist.
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