What does a flare look like for you?
Hello. I am going through the process of testing for a possible diagnosis. I had previously been diagnosed with RA due to blood test results but have never really had small joint problems. For the past 3 years or so I have been having events that pretty much disable me from doing most activities. I will start to get a little pain and stiffness in my lower back and then suddenly, overnight, I will wake up and barely be able to move. It sometimes takes 10 minutes to get out of bed. I can't put on socks or wear anything but shoes that slip on. Getting up and sitting down are very difficult. The last "event" I had lasted a little over a week and I was unable to stand up straight without support and/or walk standing up straight. It was the worst. I had been attributing these back events to other reasons, since I was told 10 years ago that based on my blood test results that I didn't have ankylosing spondylitis, but am now wondering if they might be a flare. Anyone else have similar experiences?
Numbing pain
I know that has to be uncomfortable for you to deal with. How often do you experience the numbing pain? -Latoya (Team Member)
I do not know. And I've been doing this for over 12 years.
Ya...So now I'm pausing biologics for a while. Bimzelx was the second biologic I have tried after giving up on Cimzia last year. We're going to rest for a month or two and then reconsider treatment options. I have been on, and then off, 7 different biologics since my diagnosis in 2014. Remicade worked for a while. Nothing else since then has seemed to. After trying that many treatments, I can see why you’d want to take a step back for a bit. I hope the next month or two gives you a chance to reset, and hopefully you and your doctor can find something that works better when you’re ready to try again. Keep us posted on your progress! All the best, Latoya (Team Member)
Unbearable back pain....no meds that I have stops it.it only stops when I go to bed for hrs.
Thank you for sharing your experience. Chronic back pain is one of the hallmark symptoms of AxSpa, and I'm sorry you are going through this. How do you cope with it when you are unable to be in bed? Warmly, Kathy (Team member)
I was wondering when I read all this and what I put down in March I am still in a flare from then but with some days between feeling reasonably ok? Don’t know if this can happen?
From May so many things happening loads of stress I know but really worse husband my only carer had to get heart checked so that was stressful till we got results that really worried me and hardly slept.
Then the infections came nose infection/ had a white spot dead on my tonsils doctor said so must of had an infection then coughing but had that since 2020 no one knows why had tests negative possibly not right tests I don’t know.
Back and forth to the GPs they are really fed up of me back and forward saying on my notes anxiety/ depression/ anxious etc and all of it doesn’t help, also yesterday app told me I had upper respiratory issues but no antibiotics and GP had his arms crossed, have salty mouth last week, it went it came back yesterday, nose streaming last week never had anything like it, went through three boxes of tissues then it stopped for a couple of days and no salty taste then back again. Blood tests ok but I have to beg for them as in the uk they cost a lot I was told! I found my ESR was up to 15 it was 10 in March so knew inflammation more and CRP up from 1 to 2. The pain is the same no steroids allowed because of osteoporosis yet at an other hospital few years ago I had them, it’s helps with flare but not allowed, most pain meds cause me side effects, then feeling lightheaded for days I said that but said weather probably! Now it’s not sunny or warm have no answers for me.
Just ongoing and now depression no wonder and episode of fresh blood yesterday I rang 111 said you can breathe ok so we are not worried, the uk makes me sick no one listens or understands I rang 999 stuffy nose grrrr what is the bloody point sorry for long posthello Kathy
Thank you for this it makes interesting reading.
I find much more help from you then anyone in the uk and no support from a rheumatologist team useless.
The rheumatologist doesn’t even read my Gp notes from the doctor so totally useless, I was trying for a different hospital but I was told it has no AS clinic and just normal rheumatologists so Gp cancelled it and earliest time was Feb 2027 so stuck with this, I don’t know if it’s important to have a rheumatologist specialist clinic or not do you know?
No I am waiting for talking therapy which is over a year, the support team is me.
Take care JanI do not know anything about the healthcare system in the UK (We are based in the US). It such a shame you have to wait so long for an appointment with a rheumatologist. Perhaps in the meantime, you may find some tips in this article about alternative options for managing pain. Please let us know how you are doing. Warmly, Kathy (Team member)
