how do you help a family member with bechets

[emmyu]

hello,  

my sister has nero bechets and is in a lot of pain.  she is on her last day of pain meds till she sees the pain management clinic in a few weeks.  

how do i help her with the pain med withdraws and be supportive of her.  

Her normal doc will not perscribe her anything cause he says she needs to see a pain clinic.

Any suggestions or help would be much appeciated. 

[sian35]

So sorry to hear of your sister's difficulties.Pain is a horrible thing. 

We are very lucky to have a wonderful clinical phycologist at the behcets centre of excellence in London. He recommneds using mindfulness techniques. They sound like wishful thinking but I can recommend the approach as something which can help. I did not use all the techniques in the book he recoomends - Minfulness for health - but finding the breathing exercie and the looking at cloud exercise useful ( but did not bother with the cd music for example (each to their own I guess) 

web adddress for book

amazon.co.uk/Mindfulness-He...

 This approach might help even in the short term. If you are in England has your sister been to one of centre of excellence . Not sure if they all have people like Stev who can help with pain but worth enqyuring.

If you have any questions please do ask.

Kind regards and good to see your sister has such a caring sister to support her.

Sian

[lesleyg]

Oh the poor girl.  I have neuro behcets and my neurologist said for me to go to him in an emergency as he understands, whereas many doctors don't.  He specifically mentioned inexperienced young doctors in emergency - in my case I don't look overly sick (other than an obviously moon face from prednisone).  I find also that even some pain doctors are skeptical - I made the mistake of being seen by a doctor who deals with addicts and immediately she read me the riot act without even looking at my file!

So my suggestion is paracetamol (obviously a rider here of - at your/her own risk in case she is allergic to it).  Plenty of warmth and sleep.  Speaking of which, a sedative if allowed.  I would seriously think of changing her normal doc for someone who understands how serious the disease is and therefore doesn't let her get to the point where she is without the appropriate medication.  I guess she is seeing a neurologist so I would also advise her to perhaps see him in the meantime if possible for some meds to bridge the couple of weeks.  

As I am writing this, it does sound addictive, but the pain at times is extremely severe and I would hate to think of going a couple of weeks without help if I was in the middle of a flare.

Hope that might help, thinking very much of your predicament.

Lesley

[emmyu in reply to lesleyg]

thank for you insight.  she is in constant pain, flare or no flare.  Sometimes she cant even walk.  she see a neuroloigist, stomach doctor, rheumologist, gyno, and her normal doctor.  

I'm not sure if the gentleman she is dating is not adding to the stress.   Plus I think she feels guilty that she is 30 and can no longer do her dream job.