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Mary
Dec 29, 2007, 2:28:19 PM12/29/07
to Engelmann's Syndrome
Hi Guys, long time no talk! Lets make sure to keep this site up so we
can talk and encourage each other as we go through this disease! I
hope everyone had an awesome holiday and please have a safe and happy
New Years!
I want to know how everyone is doing. Are you in a lot of pain cause
it's winter time? I know right before the rain comes I feel a lot of
pain and then when it rains I feel better. It's almost like a balloon
blowing up as the rain is about to come and then when it rains it's
like the balloon pops! The pressure seems to get better after it
rains. I want to know what you guys are doing for your pain and what
works. I am so over the hot bath thing! I've been doing that since I
was 11 years old (will be 40 in 2008!) I just started yoga and even
though it hurts a bit while I do it, but the endorphins that release
make it so the pain is not so bad.
I'm going out with a friend to have coffee at Starbucks to share
Christmas presents. I hope you guys have a wonderful day and make sure
you keep making new posts so we can stay in touch. Thank you again to
Christina for getting this group started on Yahoo. You rock!
Lots of Love,
Mary
can talk and encourage each other as we go through this disease! I
hope everyone had an awesome holiday and please have a safe and happy
New Years!
I want to know how everyone is doing. Are you in a lot of pain cause
it's winter time? I know right before the rain comes I feel a lot of
pain and then when it rains I feel better. It's almost like a balloon
blowing up as the rain is about to come and then when it rains it's
like the balloon pops! The pressure seems to get better after it
rains. I want to know what you guys are doing for your pain and what
works. I am so over the hot bath thing! I've been doing that since I
was 11 years old (will be 40 in 2008!) I just started yoga and even
though it hurts a bit while I do it, but the endorphins that release
make it so the pain is not so bad.
I'm going out with a friend to have coffee at Starbucks to share
Christmas presents. I hope you guys have a wonderful day and make sure
you keep making new posts so we can stay in touch. Thank you again to
Christina for getting this group started on Yahoo. You rock!
Lots of Love,
Mary
Christina
Jan 7, 2008, 9:36:45 AM1/7/08
to Engelmann's Syndrome
Hi Mary, its lovely to hear from you and I hope that you had a
wonderful christmas and new year?
I do generally suffer more pain during the winter months than at any
other time of the year, but thankfully I havent been affected too much
this winter and my pain levels have remained bearable! I sometimes
notice my pains are affected by chnages in the weather, but living in
Wales the weather is constantly changing from one moment to the next
and so I dont seem to be affected to the same extremes that you
described!
At the moment I am getting by on Paracetamol (4 times a day),
Ibuprofen (2 times a day) and Pregabalin 75mg (2 times a day). Its the
most medications that I have taken all together just for pain relief,
but it seems to be working and the side effects associated with these
drugs are far less severe than those I have experienced whilst taking
Tramadol or Codiene in the past.
I have often thought of trying Yoga, but I have never been sure
whether it was something I could cope with and have yet to give it a
go. I also considered Tai Chi, but there is nowhere local to me that
offers these classes! I also want to learn to dance.. but I think
thats a bit beyond my grasp at the moment! lol
Please make every effort to keep in touch as it would be lovely to get
to know more about you! :o) And PLEASE stop thanking me for setting up
the group as it has been as much of a support to me as it has to you
and I have met some very good friends along the way, for which I am
extremely grateful!! :o)
Take care for now!
Christina. xxx
wonderful christmas and new year?
I do generally suffer more pain during the winter months than at any
other time of the year, but thankfully I havent been affected too much
this winter and my pain levels have remained bearable! I sometimes
notice my pains are affected by chnages in the weather, but living in
Wales the weather is constantly changing from one moment to the next
and so I dont seem to be affected to the same extremes that you
described!
At the moment I am getting by on Paracetamol (4 times a day),
Ibuprofen (2 times a day) and Pregabalin 75mg (2 times a day). Its the
most medications that I have taken all together just for pain relief,
but it seems to be working and the side effects associated with these
drugs are far less severe than those I have experienced whilst taking
Tramadol or Codiene in the past.
I have often thought of trying Yoga, but I have never been sure
whether it was something I could cope with and have yet to give it a
go. I also considered Tai Chi, but there is nowhere local to me that
offers these classes! I also want to learn to dance.. but I think
thats a bit beyond my grasp at the moment! lol
Please make every effort to keep in touch as it would be lovely to get
to know more about you! :o) And PLEASE stop thanking me for setting up
the group as it has been as much of a support to me as it has to you
and I have met some very good friends along the way, for which I am
extremely grateful!! :o)
Take care for now!
Christina. xxx
GRETCHEN OBST
Jan 8, 2008, 8:42:49 PM1/8/08
to Christina, Engelmann's Syndrome
Hi Christina,
How are you? I'm still going though a real bad flare up It's ben since summer that it has been bad so I'm not sure flare up is te right word. Oh well I'm in touch with a doctor @ UCLA. He seems to know something about it @ was talking about th mutations of genes & which one. He wants me to join a research study. I just need to look over the paper work. For those of you in the US he is a MD whom deals with genetics.You can look him up online or talk to your MD to see if it would help you. I don't know if he can help me but it looks better than anything I've ever had. His name: Dr Bill Wilcox ( MD, PhD) with the International Skeletal Dysplasia Registry; UCLA
Ps yoga works great- esp. in the water.
take care all.
Love & Hugs
Gret
Mary
Jan 9, 2008, 4:56:40 PM1/9/08
to Engelmann's Syndrome
Hi Gret,
Good to hear from you! Dr. Wilcox is my doctor! He has been my
doctor for years. I didn't know he was doing a new study. I'll have to
e-mail him and see what he is doing. Do me a favor when you see him.
Please let him know the kind of pain you are in. He is a really nice
guy but sometimes I think he doesn't think this disease is as painful
as it is. It could have been the mood he was in the last time I saw
him but he kind of brushed it off as if this disease was no big deal.
I tried to tell him that it is a huge deal be cause it effects my life
on a daily/ minute by minute basis! Dr. Wilcox works with Dr. David
Rimoin and I LOVE Dr. Rimoin! They are both "Big Wigs" in the field.
They are both authors of many skeletal diseases. You are for sure in
the right hands and if any of you need a doctor that knows about this
disease make an appointment with him. Just make sure you tell him the
kind of pain this awful disease causes. The docs need to know this
from us so they can eventually do something for people with this
disease. They may not be able to do something for us but there are
children out there with this disease and if they can help any of them
it may all be worth the pain we feel on a daily basis. Good luck Gret
and let us know all about it when you go see him. Tell him Mary
Costello says HI!
By the way, do you live in California? Let me know, I live in Orange
County,CA
Lots of Love,
~Mary
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