Thanks Jan,
For some strange reason the rhumy doesn't consider it at all in my treatment...he is all about pain control but was willing to sign off on a 'Thermal Treatment' specialized in D'Ehler's-Danlos...it is a hot water/sea water/thermal spa treatment.
They last 2-4 weeks (obligatory to get results and for it to be reimbursed by healthcare)...I just missed this year's session (mid April...But I just found out about it tonight)...there may be some sort of other site that has one for June...You need a specialist to sign off on it and it takes at least a month to get approval.
They have them for breathing disorders (TB and many others), diabetes, arthritis, cancer patients and many, many other maladies.
It is very European to 'take the waters'...They have daily PT, exercise, massage, hot massages, mud, re-education therapy, specific diets etc. Many people go months afterwards without pain or the need for meds. It is not very elegant, or chic (nothing like those spas you see in the movies...usually they have sulphur baths that stink and the sites smell rather old and mouldy) and the hotel section is mothbitten but at least it works...
I am having problems finding a number to reach him but will try through the hospital where he teaches a whole year on Ehler's-Danlos in med school.
I am feeling a little upbeat thanks to this.
Sharon