Ehlers-Danlos Support UK
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Getting weaker by the week

Getting weaker by the week

My life long Lupus plus total lack of knowledge by every consultant, GP I have seen is making me weaker by the weak. Any tips would be appreciated. I've come off Esomeprazole now Sulfasazline is working I can see bone leaking through my shins! Now I'm educating consultants about EDS! So far 8! Can anyone advise anything to make me stronger, it's not helped by the fact that medical ignorance of EDS has turned me into a cripple! The little white specks are bone!

2 Replies

Hi I am sorry to hear you are suffering,

I too listened to the Drs for many years and nearly died!

I have EDS, plus a host of other problems, I now no longer take any medication, I was on morphine patches, oramorph, tramadol etc the list was endless. I took up a holistic way of life. It is not easy to start with but the difference within 1 month is phenomonal. I then qualified as a holistic therapist and am now doing lv5 nutrition.

I had to start with fresh juices: Kale, spinach, kiwi, apple, lemon and ginger, This is great for pain relife and energy, There are many different combinations and they all have different effects on the body. also by taking a Turmeric supplement this also is great for pain and can help prevent cancer.

I would also suggest finding a good Accuppunturist, This has helped me go from non walking and having to use a wheelchair to walking with crutches.

This website has loads of info for juicing and pain,

My children also hve lots of problems and they now are all treated holisitically and it was also recommended by a consultant at UCLH.

I hope this helps,

Take care


Sulfasazalzine is working brilliantly as my mother had colitis and my father had Ehlers Danlos and pagets not Crohn's. Unfortunately even the geneticists did see the Spina Bifida Occulta with Ankylosing Spondylosis. That's a little dimple in the back, my mother had this too. So I havebhad Lupus from birth.


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