Sorry it’s an essay ! 🙄 I don’t ever complain but I’m feeling low.
Im in so much pain with my joints ! Have physio taped literally each one last night.
I’m having a big flare up at the moment not sure if it’s my lupus, sjogrens or RA.
I have big round red angry circles all over my legs and lower trunk area, about the size of a large coin each with slight scale feeling. It’s on/across my nose chin in my eyebrows. Not itchy they just grow. Dermatologist said it’s due to UV allergy ,it’s been freezing and miserable I’m in UK, I’ve been wearing 2 layers of clothing when I do go out, which is rarely and I don’t walk around outside,I’m usually straight out of car into the shop. So I don’t think it’s a UV thing . I do have a emergancy access to him if these come up again so he will take a biopsy to see what if def is but you know when your in so much pain you just can’t cope with it,plus I can’t sit for long as my coccyx is crumbling.
The pain has been so bad with my joints I’ve had codeine, paracetamol, oramorph in the night , which I haven’t taken regularly since the infusions. (Can’t take anti inflammatorys due to only having one dodgy kidney left.
(Alot of my organs are damaged) I’m on monthly bio infusions which have changed my life so much , no stick or wheelchair anymore. I’m just hoping so much that it hasn’t stopped working and this is just a flare. As because of the lupus Rheumy said I can only have option of 2 bio infusions as others will actually flare the lupus which could be bad. I had a bad reaction to the other one. So I’m frightened to say to her, I’m suffering at the moment incase she takes me off it and I go back to being stuck in the house all the time unable to be with my family as a normal mum again. I haven’t slept properly for days apart from little cat naps, my spine is so bad and also my coccyx is damaged so I can’t sit for long . Advice was try not to sit for long but standing is bad as my feet are constantly numb and tingling at the moment. Consultant was going to put me on drugs to open up the blood vessels but that would increase my heartrate and with it bad anyway with my reoccurring pericarditis attacks I have drugs to slow my hearate down so they would work against each other. ( I sure it’s not vascular damage in my feet as I have regular checks by my vascular consultant due to having a mid Aortic graft fitted and a bypass to my last kidney (after left one died and was removed) all when I was 27.
Its making me emotional and frightened of going back to those bad times were I was stuck in my bedroom for 6weeks as couldn’t get down the stairs in my town house. I can handle the organ issues more than my joints seizing up again , that pain was unreal.
I’m sorry I’m just feeling sorry for myself and don’t want to put my worries on my husband and children. They have been so amazing over the years , I’m only 42 and just want to stay like I was with the infusion not getting pushed around by my kids in a wheelchair again or husband helping wash and dress again. Just last 2 weeks things seem to be getting worse again. I’m even finding I’m taking it out on my husband as he just doesn’t understand what I’m going through and how bad the pain is. ( but how could he)
Anyone had this happen with their joints and then picked up again after a bad flare ?? Just need some encouragement, I’m a strong woman and a fighter but feeling low at the moment. I’m just so tired & exhausted .
Thankyou all , I thought I was over all these problems.