Hello, I'm New

[Jo]

Hello Everyone, I'm glad to have found you all and that there is some
information out there. I was just diagnosed in November by a
geneticist. I am 41 years old and have had pain in my joints since I
was in grade school. I've been down the road with all the medical
tests and x-rays and finally they found the bone islands in a ct scan
and followed that up with x-rays. The ct was for another issue. My
doctors did not know what the bone maformations were and told me it
was nothing to worry about, they are harmless. Needless to say, I
thought it should be followed up. I have been seeing a geneticist for
Marfan Syndrome and thought this may be related to that but it's not.
When the geneticist saw the ct scan he ordered a full body x-ray. He
told me after doing some research that I had Camurati-Engelmann. The
pain I have is located mostly in my thighs, hips, and pelvis. I have
other joint pain as well but the x-rays only show the problems in the
pelvis, hips and thighs so far. I have been taking Aleve mostly at
night to help with the pain so I can sleep and it seems to work pretty
well. I live in Illinois and the winter weather here is the pits. Last
summer was the first summer that didn't help the pain. Usually warm
weather is a lot better for me as I know it is with the rest of you.
I've been told by my doctor that short term prednisone use is the best
treatment and I was wondering if any of you have experience with it.
Thank you for all the information. It's nice to know there are other
people out there with this rare disorder.

[Mary]

Hi there Jo,
So nice to meet you! I am in California and there are a few doctors
here that specialize in the disease. Dr. Bill Wilcox is the most known
for his research with Cammurati's.

I have been on steroids many of times to help with the really bad
times. You are lucky to be able to use something like aleve and have
it still help. I have been on prescription meds since I was 11 years
old. I happen to have the disease in all long bones, my skull and
spine as well as mu hips. I had brain surgeru 5 years ago because the
disease was causing me to go blind. They shaved off a bunch of bone to
make more room for my brain. They broke 27 of the file blades they
used to thin my skull because the bine was so hard. The doctor told me
in his whole career he the most he had broken was 3 blades! It was
amazing that I lived through something like that but my vison came
back 8 weeks later and now I just deal with the regular pain in my
legs and back.

We are here to enourage each other and as you will see the owners of
the groups are great at keeping in touch. One thing besides the
disease the we all have in common is, we care a great deal for the
people who are afflicted with this terrible disease. We are here to
lift everyone up to get through the tough times. Unfortunately you
live in a part of the country that has bad weather which is not a
friend to Cammurati's! I would try and stay out of the bad weather
when you are really hurting and try and stay bundled up when it's
really cold.

All of us with this disease notice that the bad weather really makes a
difference. We also feel pain in the summer months but it seems do do
a little better when it's warm. High Humidity seems to not help
either.

Remember to try and stay upbeat and don't put too much pressure on
yourself when you are feeling bad. We all have good days and bad. When
the bad ones come, allow yourself to have it and then try and get
active when you can. I'm not able to run,jump, or skip at all. I get
shin splints if I walk to much. So learning to live with the disease
is the best way to deal with it. Learn what your body tells you and
then you deal with it as it comes.

Feel free to write us whenever you feel like it. We are her for you.
You got friends and we know how you feel.

Hope to hear from you soon.
~Mary

[Christina]

Hi Jo!
Welcome to our little support group! I am so pleased that you found us
and I see that Mary has already given you a warm welcome! :o)
My name is Christina, I am 28 from Wales, UK and have suffered with
CED pretty much all my life. I was diagnosed at the age of 3 and have
taken presecription medication for pain ever since! Like you, I get my
bad days and they are often linked to changes in the weather. Although
surprisingly I havent been in much pain at all this winter, although I
am in no doubt that it will come back with a vengeance when I least
expect it to!
I wish we had answers and a tonne of information for you, but that is
something that we are all still looking for unfortunately! However I
can guarantee you plenty of support and friendship and we will let you
in on the little tips and tricks that we use on a daily basis to help
us cope with the CED!
Not all of our members come on this site very often, but I have email
addresses for them all and will gladly introduce you to them! :o) You
might also want to check out our original CED group at:

www.tribe.net/engelmanns

and if you have a facebook account then we have a group on there
too! :o)
If there is anything I can do in the meantime, then feel free to drop
me an email! My address is:

welshan...@btinternet.com

Until next time, keep smiling! :o)

Chris. xx

[gemtwinks]

Jo,

Welcome! Like you I live in the midwest (Minneapolis) and was
diagnosed in my twenties, but have had no real treatment until
recently. Lately I've started having some muscle atropy and more pain.
I was referred to Mayo Clinic in Rochester a few months ago and they
want to hold off on the steroids for as long as possible. Like you
most days my pain is controlled by OTC pain relievers. Once in a while
I resort to the bigger guns, but I dislike taking them. I've done a
few short stints on prednisone, but absolutely hate what it does to
me. I am not at all the typical presentation of CED. I am heavy, and
until the last two years my muscle strength was adequate. I do not
have the usual waddling gait unless I stop doing exercises for my hip.
I do have bone involvement in both arms and legs, skull, spine, and
lower jaw. The marrow is being squished out of existence in a couple
of places and I have to watch my hemoglobin levels. Try to find a
doctor who has treated at least one other patient with CED. If you are
in the northern part of Illinois, maybe Mayo wouldn't be too far a
trip for once or twice a year visits. They have other patients there
with it and both docs I've seen so far have at least heard of it. I'm
very lucky that my insurance covers Mayo, but in your case you should
be able to convince them to cover visits. It has been mentioned that
they may want to send me to Dr. Wilcox in Los Angeles, but I'm not
eager to make the trip. The recent cold snap here in the midwest was
murder for me too (highs temps below zero Farenheit is ridiculous). I
wear lots of layers (cuddleduds are wonderful), two pairs of socks,
and gloves under my mittens. My hands were actuallly warm for a while
last week. My husband thought I must be getting sick, since they're
usually even cold in summer. I have two cousins with the more classic
presentation of CED and thanks to them already being diagnosed we
figured out what I have pretty quick (only about 5 years). I am 43
years old, with one kid who does not seem to have it. Keep moving as
much as you can and watch for progression of the bone scleroses. Keep
us updated, and let me know how things go for you.

Best wishes,
Sheryl J