I went for my appt today with the rheumatologist as been struggling a lot recently with pain. I’m on hydroxychloroquine & was hoping they’d add another Dmard in. However, they’ve given me 9 weeks of steroids until my ultrasound appt as I’ve got no extensive visible swelling (so much pain though). I’m only early in having inflammatory arthiritis but they’re doing more research as my bloods are negative so harder to diagnose it’s so frustrating as feels like they don’t believe me. So hard to function everyday with two young kiddies. Will the swelling show up in the ultrasound at this stage?
I asked what the next course of action will be if they can’t see swelling & she said pain management? What will this be? I’m already needing 60mg codeine.
Sorry you're in pain Laura; that's interesting as most painful my hands have been, clawed and couldn't use - they did not look swollen at all. Have heard others say it can still be painful without visible inflammation??
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That’s what’s frustrating me as I’m in so much pain but without lots of swelling so they’re taking their time! Hopefully the ultrasound will show something they want to see.
If your pain is caused by inflammation (even if no swelling) then the steroids should help. But if they do, then they will mask the inflammation so less or even nothing will show up on the ultrasound! So discuss with your doctor/nurse stopping them well before the appointment.
Hi Laura, I’ve been on this medicine now for 7 months. It takes several months for it to begin working. I’m the beginning I had the same symptoms as you and I didn’t know WHAT was happening! I had to take tizanidine at night ( it’s a muscle relaxer) and that helped in the meantime with some of the pain and allowed me to get some sleep.
I also sought relief from a more natural edible pain reliever on days when I could not move well or think or function
Now 7 months later I am feeling better. I am learning about what I can and cannot do. My children are all older so I feel for you. I am a teacher and I’ve had to miss quite a bit of work this year. Have to be careful not to get myself flaring so I can be there for them. No more snow shoveling or whole house cleaning binges. I have to get 8 hours of good sleep and make myself sit down
Tai chi for beginners is helpful, short walks and exercise bands to strengthen the muscles around my joints. Compression gloves and my hot wax dip helps the hands.
I hope you find what works for you. It is a very frustrating disease... If you can find a person who has it, it is so helpful to talk to someone face to face.
Until then this forum is so helpful... I live in the US but this is the most friendly and caring site I have found.
Peace hugs and relief to you
Kim
Hi Kim, thank you so much for your reply. It’s good to hear that the hydroxy does eventually kick in, I just need to be more patient. The consultant has put me on steroids again until I can get an ultrasound appt as they’re saying there’s not enough visible swelling for the amount of pain I’m describing. Annoyingly the first appt isn’t until May so I’m on the cancellation list. My elbows hurt so much I can’t touch them on anytjing. My fingers felt like they were going to snap this morning. I’m worried as still needing codeine for part of the day and night even whilst on steroids.
I hope your meds and alternative therapies are helping. I tried acupuncture and having reflexology. Taking turmeric and fish oil supplements. Love using my wax bath in the eves
Hi Laura, I was referred to a pain specialist, as I was in the same boat. It's been 3 years since I started seeing him and I've been on disability for 5. When we decided that that was our last option it took almost 2 years to figure out the correct meds/dosage.
I'm on a fentynol patch, it is a good option for a longer period as a patch works for 3 days. It does come in different dosages. I also take dilaudid for breakthrough pain. Keep in mind I am on a higher dose now but I started at the bare minimum.
Now we have to sign all of these forms annually and get random drug tested, which, I have no issues with.
Many doctors even pain specialists are refusing to prescribe opioid meds all together out of fear.
This is what has helped me, but this is a convo for your dr. It sounds like he's willing to prescribe and look at different options. it sounds like you have a good relationship with your dr. Starting opioids is really a last go to, but if you and you doc agree that you've tried everything else and then some, ie) natural remedies, non medicinal treatments, acupuncture, etc). Sometimes even switching from one to another, like your codeine will help. The prednisone will definitely help with inflammation.
Thanks for your reply. It seems that it takes a lot of time and patience to find the right level and mixture of meds. Il see how I go with the steroids until my ultrasound. They’re definitely helping with my stiffness but still needing pain relief. Yes I was surprised at how happy the dr and rheumatologist seem to be about me taking codeine a lot of the time as it’s such a strong drug. I guess if it’s the only thing that helps......
I tried acupuncture and currently having reflexology. I love using my warm wax bath but they only give very temp relief. I’m interested in the patch you use, il look into that.
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