Richard's First WG Story

[andrew]

Cos you have to laugh.... positive thinking!!! WG people.... and that includes to all the family and friends who read this site and are trying to help their loved ones.

Well said, Sue. It makes a world of difference if we can manage a smile or two and maybe throw in a laugh for good measure

[RCOSSIO]

Sue,

The Lyrica does help, really well. I take 50mg 3 x day, as well as Vitamin B-12 100mg once a day, although my Rheumy just cut me back to 2 a day yesterday. It took about 1-1/2 weeks but it definitely started to work. I hope Mr. AC/DC will get better and he will be able to walk.

I still walk funny, feet hurt...but not as bad. I will keep all informed as to how it goes!

and by the way...stay the course, live for the NOW! and enjoy the new perspective of what life always bring you!

"For Those About To Rock We Salute You!"

[Carol]

Hi I'm Carol and I also have the burning feet problem and walking funny. I have been doing some research and Benfotiamine - a fat soluble vitamin B1 keeps on coming up (combined with Methyl B1200) as a solution for people with the same kproblem with diabetes. Has anyone tried this - I would have to order it from the US it seems as its not available in Australia. I would love to hear from you before I go ahead and order it.

[RCOSSIO]

I just stopped with the Lyrica after 8 weeks. I initially started at 50MG 3x daily and Vitamin B-12 100MG 1x daily. After 4 weeks my Lyrica was reduced to 2x daily and then 2 weeks later 1x daily. I just finished my last dose this week but still take the B-12.

I don't have the burning sensation anymore, but still have numbness around the pinky, heel and ankle. My doc thinks it has more to do with the swelling on the veins which compresses the nerves. But it has gotten better.

Lyrica does work and I would recommend it. I am not sure about Methyl. Lyrica is a prescribed medicine, expensive but worth it.

Please let me know if you are successful! and remember to live in the 'NOW!"

[Terry]

Richard, I have a confirmed case of fibromyalgia and take Lyrica 100 mg. three times a day. For about the past two years, I've had a lot of trouble with my feet that I have attributed to the fibro, but now I'm rethinking it. Most nights I have to sleep with them hanging off the bed because I can't stand the burning pain I feel when I lay them down on the bed. When I was a baker and on my feet all day, I couldn't stand to even have the covers on them. Things are better now, but I still sleep slanted.

Interesting that your original blood work did not confirm W.G. Mine didn't either. We are running another battery of tests this week with W.G. in mind. I'm not ready yet to walk away and say "whew! That was a close call!"

[ian anderson]

hi richard read your story can readily understand when you spoke about burning feet that was my first symptom like walking on broken glass take care we will talk agn