Tmj

[chandlermandy]

T.m.j. dysfunction, no voice and extra tired . I have been diagnosed with lupus for two years now and previously had steroid injections for flare up . is this the sign of a lupus flare? Just back from the docs and he said its not connected to lupus so wouldn't give me an injection . Advice please?

[EOLHPC]

Hello chandler. Sorry you're very poorly. The temporomandibular joint is synovial. Synovial joints are involved in SLE. I'd think you could be experiencing some kind of flare. And of course, hoarseness can be due to synovial inflammation of a synovial joint in the voice box affected by SLE. Can you contact your rheumatology clinic about this? My feeling is that your Dr hasn't enough experience of lupus to realise these problems could well be related to your lupus

Hope you'll let us know how things go

XO🍀🍀🍀 coco

PS there was a great discussion about hoarseness earlier on here this year. Here is a link:

healthunlocked.com/lupusuk/...

And here is an excerpt:

Wallace writes in The Lupus Book that lupus voice hoarseness is mainly due to a synovially lined joint in the voice box (aka vocal cords) which is in the larynx. This joint is known as the cricoarytenoid joint. Lupus activity produces synovitis. When the cricoarytenoid joint becomes inflamed by synovitis, a hoarse voice can develop. Of course steroids, eg pred, are great for reducing synovitis....this joint can also be sprayed with steroid aerosol & /or locally injected. Apparently it can be vvvv hard to diagnose this type of synovitis clinically, eg by examination @ ENT

[Bexs18 in reply to EOLHPC]

Thanks, having very similar issues with my jaw, rheumy wasn't interested!!! Convinced I am having a flare but of course they think otherwise, wish people would listen! Hugs to all x

[EOLHPC in reply to Bexs18]

👏👏👏👏Am so glad if this info can be useful: please let us know how you get on with this. We do seem to often need to be incredibly well informed & confident in getting the support we need from medics. I find this daunting. So So so many times it's been my own research and perseverance that has resulted in finding effective treatment from more insightful or experienced clinicians...often life changing treatment...and often for an issue that turned out not to be all that obscure. in almost all those instances, there have been trails of perfectly competent clinicians who were no help at all...and frequently actually in what seemed like some sort of denial.

I tell myself: medics are as human as I am. We all goof. We can all be unreasonable. It's understandable medics, quite reasonably, often find my case challenging because I'm a very unusual and complex patient. Etc etc. But the diff is that the medics' code involves swearing to cause no harm....well, blinkered diagnostic practice does harm, no? Why can't more medics learn to know their profession more generally....well enough so that they could have a go at referring us to other consultants who just might know more about, or have more specialist experience of, our complex probs. hmmmmmm.

XO🍀 Coco

[Bexs18 in reply to EOLHPC]

Agree! Had an horrendous consultation this week, long and short - I took myself off hydroxy 18 months ago after putting up with what I know know are side effects for several years, side effects have now gone and rheumy doesn't agree the symptoms were caused by the hydroxy (?!) basically all my consultations are now about why I won't take it. Not interested in any other symptoms, medication etc just thinks I am being difficulty! recently started with a flare went to gp to catch it in time with some steroids, then appt with rheumy she asked my why my gp had given me the steroids?? It's a joke, can understand gp not being that informed as they are general practitioners but rheumy is meant to be a 'lupus' consultant yeah right!

Apologies chandlermandy I have hijacked your post! Hope you feel better soon, we just have to keep plodding on and knowing we are not alone!!! 😺

[EOLHPC in reply to Bexs18]

There it is! Hope your flare settles down ASAP. 🍀🌻

[chandlermandy in reply to EOLHPC]

Thanks you for this information it is exactly what my thinking is. I have contacted rheumatologist and awaiting a reply.