I’ve just posted this on SRUK forum but I know there are many UCTD people like me on this one so apologies for duplication if you’re on both like me!:
Hello everyone
I’ve had some new symptoms this last month and thought id ask you helpful people if you’d come across this. Firstly I’ve had UCTD with scleroderma gut problems for years but the gut problems have worsened since a diagnosis of SIBO from the Royal Free before the pandemic.In fact for a while they thought I had systemic sclerosis. I’m putting mctd in there too as I was positive for high RNP1 antibodies for some years although this has not been mentioned to me. I’m on rotating Rifaximin with Ciproflaxacin at the moment. I’ve tried recently to have bigger gaps between the courses as I’m worried about resistance and try and cope with recurring debilating diarrhoea pain weakness etc as long as I recover after a couple of days. Six weeks ago I had an attack with the usual worsening Raynaud’s, chills exhaustion and weirdly cold like symptoms when I also developed pain and tightness in my chest and extreme fatigue. In fact it coincided with the start of the cold spell here in the south east. It came and went worsening if I moved. I also had a drop in blood pressure when I got up from bed. A couple of occasions I was ok and went outside and the cold triggered it. I could hardly walk back. I contacted my gp who insisted I went to a&e. They did the usual bloods, ecg, chest X-ray and think a ct which were all clear. Needless to say the pain had gone but I had an attack as soon as I got out of the car into the cold at home! It gradually went over the next few days and I recovered and persevered in my goal of a month without antibiotics. Then I had awful diarrhoea after bout of constipation last Sunday and started Ciproflaxacin. I’ve also now had palpitations and awful spasms in my back and torso. Worsening pain in my hands and elsewhere too. The palpitations seemed to have gone but I’m profoundly weak with occasional spasms when I move around my spine. I have osteoporosis but although I also have kyphosis no compression fractures. Dizziness has worsened too.
I did see a young gp locum at my gp practice yesterday but although sympathetic seemed to imply it’s part of the usual pain you get with these conditions. He is doing some bloods though, b12 etc. I’m supposed to be trying metoclopramide but had an attack of weakness rather than like the heart problems the 4 times I’ve tried. Also im not sure if necessary for me as I know some of you your gut doesn’t work at all whereas at least with me I do go in dribs and drabs and sometimes too much in one go. I’ve got some gastroparisis on a endoscopy. Gut pain has been awful with wind etc and reflux worse. My main concern is is it a partial pseudo blockage or something else other than normal gut problems. The pain heart problems etc all worse when I go to the loo including affecting my bladder. I had urgency the first few days. I have chronic retention and recently diagnosed with grade 2 rectocele. The RF think all related to connective tissue disease. My next review is July.
Does this sound familiar to ant of you? I suppose at least it’s a bit better with the Ciproflaxacin but it is worrying me
thank you for reading
anyone else UCTD?
Is this lupus?
A little advice please 
I’m new to this, just after some advice 
Joints very bad this past two weeks 
