As many of you already know I have been diagnosed with UCTD. My Rheumy says to my face that it is Lupus but for some reason (that I can’t get to the bottom of) he won’t put that on my official diagnosis.
I have an MRI coming up in July and an appointment with a difference Rheumy on the team who specialises in Vasculitis and Bechets.
I’ve posted before about the aching and stabbing pains I get in my back (just at the base of my ribs) which sometimes wraps around my side and into my lower abdomen. Mostly the pain is on my left side but sometimes I get the same stabbing pain mirrored on the right side of my back (same spot - base of ribs). When it gets really bad I often get cystitis like burning pee.
I saw a physio a couple of weeks ago who confirmed the pain wasn’t a muscular or skeletal issue. He gave me a side stretching exercises to try but I think this just makes things worse.
I’ve been taking morphine every day for the pain for about 9 months.
I’m really struggling with this pain. I don’t even know if it’s linked to my AI.... the Rheumatologist says I need to get off morphine but he doesn’t say what I would do about the pain. I’m at a complete loss.
To make matters worse I have a whole host of other complaints: my legs and ankles are swelling badly atm; I have several large plasters covering my weeping bleeding sores; my joints ache; my malar rash is red and hot; I’m peeing all night; my tummy has swollen up like a watermelon; and I could sleep for Britain.
My dad has suggested that I try hypobaric oxygen treatment. It is supposed to help with AI disease. I’d need a month of daily sessions.
Can anybody relate to these back pains at all? I feel like I could cope if it weren’t for this.
Love to you all x
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Crazy_Cat_Woman
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So sorry you've been left in the lurch Crazy_Cat_Woman..I had a read through your previous posts and see A&E just sent you home one time, but with the combination of the swelling and the pain, you're justified in seeking urgent help again...ask them to check for blood/protein in pee. It's terrible to be put in that situation, all the best xxx
I had a pelvic ultrasound 2 years ago but it didn’t show anything unusual.
An ultrasound scan of my kidneys that same day showed what looked like a very large stone....but that had mysteriously disappeared a few weeks later when they ran a CT scan (the pain was still there though). The nephrologist gave me a 2 minute follow-up consultation - just enough time to glance at my scan image and discharge me back to the GP....
To be fair a Lupus diagnosis wasn’t on anybody’s radar back then. It’s probably worth getting my Rheumatologist to have another look.
Have you had your bowel investigated. I thought it was my kidney as I kept having pain under ribs on the left side. This was mirrored on the right side. I now know it’s digestive related and is linked with constipation even though I go regularly. I don’t know if it gets inflamed or what but always pain on left then across front to right side. And if I am lucky bloated swollen stomach that is hard.
Hi Hamptons....unfortunately my bowel has been scanned and ‘oscopied’ to death! I even went privately to see a gastro specialist in Sheffield. Nobody has found anything wrong with my guts yet......and I’m not Coeliac.
It sound like you are having a flare up. Have you had urine and blood tests for kidney function recently? Your back pain could be kidney pain, if it's not muscular or nerve pain. This might help:
Have your kidneys and liver checked. The swelling and back pains wrapping around to your abdomen are sometimes related to kidney or liver issues, not necessarily back issues. You may want to see a nephrologist(kidney doc).
I also have been seeing different gastro doctors for over a year and they say they cannot find anything! My rheumatologist says that pain has nothing to do with UCTD!
One day the pain got so bad I ended in a&e but they just send me home with codeine!!!
Still haven’t got to the bottom of it!
It can be extremely frustrating…when all drs just say it’s nothing to do with their forte.
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