Oral Paroxysmal Haematomas

[Barnclown]

This post follows up on the discussions in winterbaby's 2 posts (inc her photos), I've replied to both of her posts, and described my version of both these OPH s & my roof of mouth erosive lesions. Am just posting this now so you can see this photo. I've posted about these on here before during the past 4 years...and had some good discussions. This photo shows a relatively small OPH...the other pics are too horrid to share! My medics go white when I show them prints

[Barnclown]

The current explanation my Drs are giving for these OPH also covers the paroxysmal haematomas in my extremities and other places: sjogrens + sle + ehlers danlos type hypermobility. my feeling is that as more is understood about connective issue disorders & autoimmune disease, I'll learn more about my tendency to these sort of vascular events...and I suspect my simultaneous raynauds & erythromelalgia + blood pooling will be linked in with all this.

It's awful in a way, but finding others here on forum who manage these sort of symptoms is a great comfort to me. My version of this stuff began to be troublesome in my teens and has progressively worsened ever since, but I've at least learned to manage this stuff better, to keep relatively calm & carry on, + to brief my medics clearly & concisely. Meanwhile the discomfort & inconvenience has become easier to minimise...and knowing I'm in good company (thanks to this wonderful forum) makes all the diff to me😘. Am so glad winterbaby posted her pics & got great discussions going on this subject amongst several of us living with this stuff👏👍🍀

[littleeffie in reply to Barnclown]

Hi yet again barnclown,

We do seem to have so much in common!

I have had the mouth ulcers,blisters ,craters and sores for years before any diagnosis.They were always dismissed as "" being under the weather " or " stress" ha!

What really worries me is that with both sons diagnosed with Ehlers Danlos hypermobilty as well as me is why they refuse to keep a closer eye on my one son who has awful mouth ulcers,blisters and craters which last ages and cause a lot of pain and just pass it off that is probably stress due to his ADHD ,aspergers,and Ehlers Danlos ( which they kept saying was growing pains ,despite my diagnosis grrrr! Until I threw a tizzy fit in the GPS about it.They did some Lupus bloods a while back to shut me up but came back ndegative but how many of us have had negative test results for ages before turning positive.The problem is made harder by my son not being able to express himself easily due to the aspergers.He just has another crop of sore craters and blisters appeared over the weekend so the photos and posts here are really poignant.Feel like another gp tantrum coming on but hubby says to stay calm as CRPS flaring more so feel like arm in boiling oil badly today and physio told me off this morning for overdoing it.

Oh not a good day today so thanks all for being there to listen.Any advice regards my sons probs welcome.

Thanks Effie

[Barnclown in reply to littleeffie]

Oh gosh: your update is full of tough news, and I wish you & yours weren't having to deal with all this, but even so am smiling at your reply: thank you effie

Have just spent 2 hrs at local hosp eye clinic having annual check up, scans etc...am feeling whack blotto....I'll send you a PM...please remind me if I forget....am putting my mind to this: probably not much I can suggest, but I've learned a bit from the experiences of my 19 yr old autistic epileptic godson & his family...we're v close...his parents have been quite successful @ working the system (recently a consultant commented on his hypermobility (at last...I've been quacking on about it for years))

👍🌻🍀👋

[johare]

Thank you both for your pictures. I have small ones of these. My mouth is sore most of the time with either ulcers or cuts to my tongue. I am becoming increasingly reactive to foods. I have sle, Raynaud's, sjogrens, heart and brain problems, IBS, RA, haemangiomas etc, etc. I had hyper mobility pre RA as a dancer, gymnast and thought I damaged my joints. My rheumy did ask about hyper mobility but I didn't put it together.

Also I feel for you with your son. My daughter and grandson have Aspergers, I understand the frustration of being an advocate. Drs don't seem to think they have a right to have what other people have just because they can't express it.

As a nurse I remember there was a high number hyper mobile children with autism. Connective tissue issues were being investigated. Also I remember studies with serotonin levels and sleep and odd.

Thanks.

[Barnclown in reply to johare]

Wishing you all the best, Johare. am v glad of your thoughtful reply. And am v much feeling for you. It's something adjusting to this debilitation after finding joy in that sort of activity. I struggled with a kind of bereavement for years....now I'm doing pretty well at vicarious delight. I sense you could be managing this too. Your comments re hypermobility & autism are vvvv interesting: the voice of experience...means a lot to me (I'll tell my friends)

🍀🌻

PS & OCD

[johare]

Just realised that should have been ocd, silly autotype.