Bad day

[Brichel]

Both my Bechet's and Lupus are flaring. Mouth and genital ulcers, nerves in face going crazy, swollen everywhere so tired and my head is hurting but it's not a headache just zapping. Wish it would stop

[belle623]

Hi Brichel

My heart goes out to you. I think you are one of the strongest humans I know. This sucks! I pray with a new day, you start to feel freel of both conditions. Keep reaching out to us and letting us know how you are doing.

Xoxo

Ash

[Brichel in reply to belle623]

Thanks. Still hurting today but less so. Thank goodness for Magic Mouthwash.

[belle623 in reply to Brichel]

That stuff is magic! Have you ever tried the ointment?...

hugs!

[Brichel in reply to belle623]

Yes. Helps but multiple ulcers still makes it tough.

[rooser1]

Try to sleep. Thats what I do. Cant be all the way miserable if you're not aware of it. Remember that it is ONE day at a time. This is temporary.

Stay up on water.

xoxo

[Brichel in reply to rooser1]

Thank you. A little better today.

[Papapickle]

Hi,

I understand how you feel. I have developed trigeminal neuralgia alongside by NBD which has caused me no end of issues.

The ,pain when it comes from the TN is immeasurable and stops me in my tracks, I find that the pain meds to take the pain away completely knock me out, which is a relief but is no good for long term use as these make me useless day to day. This in turn triggers my anxiety and feelings of being uselessness and failiure.

My only advice is to take relief where you can, try and sleep where you can an try and relax and zone out of the pain. It took some practice but does help.

My thoughts are with you and remember just a day at a time, after all you are in a marathon and not a sprint to the finish.

All the best,

C

[Frank22222]

i have been having what started with eye twitching and then its like randomly my whole left side of cheek to eye go into a spazum i had a nurologist say its stress but now im so curious as i have lupus bechets vaginal ulsars etc

[Brichel in reply to Frank22222]

Sure stress plays a part but ask him about triennial nerve pain. It's what I have.

[Brichel in reply to Frank22222]

Trigeminal. Really dislike spellchecker.

[Hidden]

Damn I hope you’re feeling better, nothing worse when everything seems to be going worse at the same time. Sending virtual hugs 🤗♥️

[Brichel in reply to Hidden]

Thank you. Quieter now but so darn tired.