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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

Reply To: My girlfriend have EDS Type 3

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › My girlfriend have EDS Type 3 › Reply To: My girlfriend have EDS Type 3

April 8, 2015 at 8:26 am #5420
Christophe
Participant

Hi,

Yes, I know that there is no way actually to get rid of this Illness definitely. Of course, it’s quite difficult for me to have a complete view of this and I’m maybe too newly informed about EDS to accept that fact.
I purchased the book yesterday and have started to read it. My girlfriend do not speak English at all, so I will have to translate it for her or read her the most important part.

I think the part at page 89 (What Can be Done for Patients Suffering Today?) will be usefull for her next visit at hospital and will ask to doctors to read that part too and maybe do the necessary analysis.

TENS machines are a kind of electic stimulation for muscles right ?
I followed a mindfullness meditation 6 month ago. Do you have any experiences with mindfullness for pain management ?
In Belgium, we have a specialist, Dr Manicourt in Brussel who know well this syndrome, but he will stop working soon as he’s getting old and as it seem, there is no replacement for his position.
So it’s quite difficult to find a good specialist. they are rare and overbooked usually.
But in our nearest hospital, they usually never heard anything about EDS.
My GF had a appointment with a physiotherapists this morning. I printed for her a document with some good method for EDS patient and finally, my GF told me she had to cycle a little and she feel the pain terribly right now. Of course, she have to workout lightly in order to rebuild muscles, but I think cycling at this level is too hard for her.
Starting with exercice in a swimming pool is, I think more affordable for her.

But regarding her next hospital visit, and speaking to a newbie. What will you recommand me to do, to ask, and to start with for her. Is there a best method to improve her wellnessg ?

I will try to do my best and be there for her. It’s not easy as I’m a quite active man, doing lot of sports, diving, cycling hiking … and as it seem, sharing those activities with her will never be possible. Quite difficult to start a relation knowing that. but she deserve to be loved and she have a wonderfull personality (I’m 41 Yo and she’s 32, by the way)

Thanks,

Christophe