Thoughts please. As many of you know I ended up with a fractured pelvis at the end of June. No major trauma caused it but my guess it was running up the stairs in a panic. However I really don’t know. First symptom was significant right adductor muscle tenderness and utter incapacity consequently and nothing else. Obviously as a post menupausal woman I thought osteoporosis, especially given low dose steroids for the previous 18 months which worked extremely well incidentally on capacity levels. GP stupidily thought I couldn’t have a bone density test till my fracture healed. That’s turned out to be just rubbish. Bone density scan isn’t until end of September. Sigh…
So rheumy x-rayed pelvis back in March. Conclusion was sacroiliac joints show irregularity and sclerosis of left scaroliliac joint (fracture was right pubis ramus both superior and the other one as in two on the same side).
So now I’m with a physio to get back walking properly. First I’ve always had low back pain, comes and goes but has always been there. She discovered I’ve significant reduced chest expansion issues and reduced mobility of my spine. Neither of them I was aware of. She thinks that’s all indicative of spondyloarthritis and would rather rule that out or in before she treats me. And she thinks a decent MRI with STIR views would help diagnosis. Very thankfully she’s emailed my rheumy about it to get my GP to order it.
I’m thinking all this makes a lot of sense. What are anyone’s else’s thoughts? Of significance if that one shoulder and two elbows are presently screaming at me too.
As you can appreciate I’m beyond effed off that it’s now the end of August and all this started at the middle of June and other than my fractures are healing I’m no further forward.
Well rheumatologist is arranging a full spinal MRI now. So it sounds like I’m entering the realms of imaging… Given some of your experiences with imaging, I’m hoping it will be reported properly or at least coherently…
It’s a bit confusing really 'cos PsA is a spondyloarthritis wherever it strikes. So I guess what your physio is concerned about is that it may be affecting your spine i.e. axial spondyloarthritis. And from what I (semi) know and a bit of refresher googling, axial spondyloarthritis may be ankylosing spondylitis or it could ‘just’ be PsA. So basically all I’m saying is that your diagnosis may not change if it turns out that your spine is affected. Which is no consolation whatsoever, I’d imagine!
Have you had your spine checked during the physical exam at rheumy appointments?
Those fractures have put a real … I was going to say ‘spanner in the ointment’ … so might as well stick with that. They’ve just messed up your summer good and proper. However if you are found to have spinal involvement, that could speed up progress on the treatment front.
Precisely Sybil. It just has to be best to get a handle on it all wherever it is. Full spinal exam - no not at the rheumy appointments but then I wasn’t complaining about my back. I was complaining about my hip and so she got that x-rayed and yes there was hip involvement.
So far I’ve gone from 10 tender joints and 2 swollen ones in March to 20 tender joints and 4 swollen ones in July and inbetween had 2 spontaneous fractures in the same side in my pelvis. Now from the physio exam it seems my spine isn’t great either.
So by my reckoning, I’m on my way to osteoporosis, and whatever is going on with the PsA it’s getting worse. So far I haven’t noticed the sulfasalazine doing anything but at least I’ve no side effects - not even yellow wee!
However by the next rheumy appointment in November I should at least know my bone density, have had the full spinal MRI and will have given the sulfasalazine enough time to do anything positive, so surely then we can make some progress. I wish I was more patient though…
Over the day or two I’m going to put a rocket up my GP’s nether regions so as to at least get them off their behinds to have everything coordinated in time for the next rheumy appointment in November. Wish me luck on that one!
Definitely wishing you luck! Wondering also if the rheumy appointment might be brought forward a little if you’ve had everything done in time to do that.
My last physical exam was a little bit too light touch for my liking, very brief and no pressure applied which is hopeless for me, my joints don’t notice a brief prod even when they’re otherwise painful. But then that was the nurse, a very nice nurse but not the head honcho. I’m taking a drawing of ‘where it hurts’ next time and will ask for specific joints to be more definitely palpated.
Gosh I’ve only ever seen Dr Ellie for the physical exam, never a nurse. Like you I think the nurses are super nice but I might feel a little short changed if I only saw them.
Good point about bringing the appointment forward. I have found though trying to change an appointment in Bath to be fairly impossible but we’ll see when I get there.
Very best of luck with it all!!! It sounds like you have a fantastic physio, some seem to not bother questioning diagnoses and just treat according to what they have been told the problem must be, I’m really pleased that yours has pushed for further investigation.
Yes, it is important to tell the rheumy’s about ALL joint issues, even if we don’t think they are related it can show the rheumy a pattern of involvement that can be helpful in diagnosis.
My shoulders had been a mild issue on and off for years and it wasn’t till the left one “froze” that I really noticed it… and I have no idea how long my elbows had a been a problem I only noticed that when the rheumy grabbed one, then when I got home I checked the other one, and voila it seems it had/has enthesitis too, something I rarely notice unless I put my elbow down on a hard surface the wrong way lol
Here’s hoping you can get all the imaging done and results back in plenty of time for next rheumy appt!!! It would be great if it’s possible to get in earlier, November will seem like such a long wait for you… hmm… the waiting seems par for the course with rheumies
