Does anyone here have sore burning tendon tissue in ankles, toes, wrists and fingers? I think its coming from tendons/fascia as they seem to be shortning as well . The physio says that its a trigger finger but its happening to my toes as well and sometimes moves into my hips. Is this a lupus thing and how can I get some treatment......my joints are ok.
Be glad of some help.
I have this too. I was previously diagnosed with RA but now rediagnosed with primary Sjögren's. No solutions but physio helped my RA type tendinitis a lot. I haven't found relief from Mycophenolate yet - been on it for 10 weeks now.
Thanks twitchytoes......I'm sitting here now & my feet feel so bruised (no bruises!) I don't have the rheumatoid factor just sicca syndrome and a positive ana......there's something not right but the medics are'nt interested!!!!
Have you had a lip biopsy? I'm ANA positive but RF negative. Used to be other way round. Don't let them dismiss you. Sjögren's is very inderdiagnosed but I think, as science advances, will be found to be a much bigger cause of autoimmunity than is currently fully acknowledged.
Thanks twitchytoes.......saw a dermy last year with rash which gp insisted was fungal.....for 6 months!!! Dermy said not fungal & treated it, then refered me on to rheumatologist. After tests rheumy said he thought it was bones even tho my CK was consistently well out of range......I kept saying that it was muscles & tendons that hurt......even had a mri on proximal muscles.......fell on deaf ears & as this was a private consultation I wonder if they saw £ signs over my head!! I'm not a troublemaking complaining type of person but I do know a bit having taught PE for years.......trouble is I don't have much faith in their knowledge or the maxim...first do no harm.....
Here endeth the lesson....and thanks for listening.
Am so sorry DT...it's dreadful. Am vvv much relating to your post. My version of this made life a misery throughout my body until 6 years ago in my late 50s when a brilliant lupus expert rheumatologist figured me out.
Are you being seen by rheumatologists who have special expertise in SLE & sjogrens? Because my instinct is that you'd benefit from a second opinion @ a lupus centre of excellence (Paul Howard at Lupus UK head office can give you info)
My version of what I suspect you're describing was disguised by my global ligamentous laxity (am vascular ehlers danlos hypermobile). We think my infant onset lupus + early onset sjogrens going without daily oral systemic treatment for decades causing widespread active inflammatory process to denature my soft tissues causing tendon & muscle tightening + enthesitis: for instance a brilliant Bristol orthodox surgeon figured out my equines contracture and prescribed arduous ongoing gastrocnemius stretching which I'm only able to benefit from because I'm on such an effective daily oral combined therapy lupus treatment plan...without this, my soft tissues couldn't be responding to rehab...I now am more mobile & in less pain, with more stamina & resilience than I've had since my 20s
Hope something in there is useful
Take care...am glad you're here
🍀🍀🍀🍀 coco
PS have you spotted this recent discussion here? Might be relevant:
Tendons
Sore mouth!
Sore skin-creases
sore legs and exhaustion
Very very itchy
