Hey Chris,

I hope you are feeling a bit better. Hang in there chookie, i know it's bloody hard sometimes but just remember that "this too shall pass". Don't forget to stay positive and cheerful because that is one of the things that we love about you!

I had a rough couple of months recently too, especially over Christmas, but i'm getting back on track again now. I've recently tried Di-Gesics (Dextropropoxyphene hydrochloride) and found that they worked well with no side effects (always a bonus!!), so much so that I reduced my other pain medications by half within a fortnight.
I tried the Norspan (Buprenorphine transdermal patch) but that gave me very nasty side effects, so i stopped using it. Then to top off my severe pain, inability to walk and sleep deprivation, my dog passed away in January from GME (causes brain tumours - she was only 4 years old, my best friend and a great companion, especially when I was in isolation for the kidney transplant). I miss her so much.

However, my life is definitely looking up: For instance, i had a brilliant birthday recently, am back at Uni soon - which is always good, the new Harry Potter film comes out in only 155 days, and the new Harry Potter book only 8 days after that, Woohoo!

I know the frustration you're feeling with the doctors not being able to do anything, especially during a flare-up that is beyond your control (eg. the weather!!).
I have been trying alternate forms of pain relief such as making a pillow bed (I now use the NASA foam pillows and lay them side-by-side down the bed to sleep on), hot water bottles/wheat bags/heat therapy, lavender baths (i followed Nannette's advice and bought a spa-bath foam mat - the bubbles work wonders on sore bones!) and gentle theraputic massage.

Perhaps finding a doctor that is well researched in CED will help you to get better pain relief during the flare-ups and more answers about this disease. Though i agree with you, whenever i have surfed the net lately there hasn't appeared to be many recent developments.

My CED doctor, Professor David Sillence (Genetics Department, Westmead Children's Hospital, Sydney NSW Australia) has been in contact with Dr Wim Van Hul back in 2001 during the International Skeletal Dysplasia Society (Dr Hul has experience with molecular investigations into the osteo-sclerotic group of bone disorders, and his group has established that mutations in the transforming growth factor beta-1 gene are responsible for the pathogenesis of the Engelmanns disease). We sent across my DNA to his Antwerp group of doctors to see if he could locate my CED gene. He found out that I am indeed a mutation, however my mutation was in the typical genes associated with CED (it could be anywhere). We have tested my DNA several more times (it think we even sent it to Japan) but no luck as yet. I don't produce TGFB-1 at all, so i am currenlty taking pure Colostrum. It has improved my energy levels immensely. I am also going to have my cytokine antibody levels tested.

I would definitley give Dr Wim Van Hul a go Chris, they may just find your gene. Although i know this probably will not help your pain levels at the moment, we must remember that through research they will find a treatment and possibly a cure in the future.

Until next time, i give you all my love and hugs and wishes for good health. We are all thinking of you, and hoping that the flare-up and pain will pass or at least ease off soon.
Take care chookie, keep smiling, and hang in there. Lots of love,

Loz xxoo

Dont forget that laughter is sometimes the best medicine, so i am prescribing you a strict dosage of classic comedy. I have recentley started watching "How I met your Mother" TV comedy from the USA, and seriously recommend that you do too. I think you will like Barney's antics! If not Monty Python's Holy Grail is always good for a laugh. Or watch some cool chick flicks to help pass the time. :o) xxoo