[Rara Avis]

Hi All

It's so interesting having found this site and reading so many familiar stories...

After 20 years although I've not received a firm diagnosis of SLE I have one of SCLE and DLE, along with a long list of other ailments.

I have finally found a rheumy who listens, a remarkable feat in itself, and who has agreed that plaquenil alone isn't controlling my symptoms and he's starting me on a low-dose of pred to see if this helps. I say remarkable because usually people won't see past my shiny red crutches and put everything down to chronic pain, something I've adjusted my life to cope with through a brilliant rehab programme.

I get so frustrated as I'm unable to work and have been out of my career for too long to return, and am fed up with having been written off at the age of 38. I'm trying to retrain but am finding it so tough as I've been really ill since December.

Anyway, in a nutshell that's me.

Anna

 

[LolaLola]

Hello Anna,
Welcome here. So glad you have a good Rheumy. I agree it is hard being written off at a young age. It hasppened to me too.
I hope the Pred. helps you.
x Lola

 

[Katharine]

Hello Anna and welcome

I'm glad that you seem to have found a good rheumy and I really hope that he/she will be able to help more and improve your quality of life.

I hope the pred works for you. If it does it may help the rheumy to decide if there are other things that can be tried treatment wise. Is the chronic pain you are sufferng from all being out down to SCLE and DLE?

bye for now,
Katharine

 

[Rara Avis]

Thanks for replies.

Katharine, some of the pain I get is from my back, but I've learnt to live with this. The pain is in my bones and muscles and it's getting progressively worse. I'm sure that I must look drunk alot of the time 'cos I tend to stumble + sway!

I have the problem that because I'm so used to living with pain, and having temporal lobe epilepsy have learnt the skill of doing things without conscious awareness and being able to shut my mind off. So, whenever I get examined I shut off to the pain. Last time I couldn't play my guitar for a week after being prodded.
Anna

 

[onetay]

Anna,
Hi and Welcome to the site. I am sorry it has taken you so long and still don't have a dx of sle. It is good that you have found a rhuemy that will help you finally. I hope that join us in the chat room and share your story with others. We are here for you and will help support you in anyway the we can.

 

[debatat]

Hi Anna

Just wanted to say hi and welcome to the site. I am sorry that you are in so much pain, that must be very tough to live with. I hope that the pred works for you.

Deb

 

[pollianna]

Hi, am glad you found the site everyone is so helpful

 

[Pink Pearl]

Hi Anna,
Welcome to the board. I hope you will find support here that has eluded you. I can understand the frustration of not knowing what exactly is happening, tho it sounds like maybe you have finally found a doctor to understand and help.
I also hope the pred helps you.
Take care of you.....
Sally