new member Lillian Gonzalez, Phoenix, AZ

[Elsa]

Hi, my name is Elsa and I have a sister in law with CED. She was
diagnosed at age 5 and now 37. She is currently having a very hard
time dealing with her condition. She continues to have bone growth
and loss of balance. On side of her body has grown much bigger than
the other and feels lost with no answers or medications available to
at least make her feel comfortable. I have agreed to do some research
for her and was very excited to have found your site. If there is any
information you can give me as far as what kind of doctors she should
see and questions to ask that may help her deal with her pain, would
be greatly appreciated.

[Lauren]

Dear Elsa and Lillian,
Welcome to our CED support group. Its great to meet you, i am so glad
you found us at your time of need. You will see in time that we are a
very friendly group of people who are only to happy to support and
help one another in any way that we can.

In regards to Lillian's pain, I believe that many of our members in
this group (and tribe) will agree with me when i say that we have all
experienced a significant increase in the pain's severity and
frequency in the last year or so. Some of us think it may have
something to do with global warming, especially as many of us are
affected by the weather patterns and barometric pressure - often
causing a 'flare up' in the CED pain.

Below is a list of simple treatments that we find help ease the pain
(see discussions also for other ideas):
eg. Hot water bottles. Microwaveable wheat bags. Electric Blankets.
Spa baths. Hot baths or showers. Therapeutic Massage. Ultrasound
therapy. Thermal Pants. Leg warmers/gloves, Wearing layered
clothing. Sleeping on pillows. Sleeping on a Water-Bed or soft Latex
Bed to support the bones. Using a wheelchair if in pain. Gentle
exercise. Doing things to help keep your mind off the pain (reading,
listening to music, watching tv/dvds, doing art/crafts, painting,
chocolate! etc).
I don't know if anyone has tried other alternative treatments yet such
as acupuncture, or hypnotherapy.

Obviously pain medications help ease the pain, and some of us take
other things such as sleeping tablets (especially after several days
of no sleep from the pain) Iron tablets, Vitamins or Prednisone.
There should be a list of our medications on here (in discussions) and
if you visit our CED Tribe support group website you will find more
detailed information about each persons medical history.

I have recently contacted some doctors known to be involved with
treating CED patients, in the hope that they will agree to be our
'online doctors' whom we can all email for advice regarding CED issues
or pain medications/treatments/scans/diagnostic tests, etc.
So hopefully we will be able to ask a specialist doctor several
questions about our individual experiences with CED. This would be
wonderful if we can set it up, because many of our members only have
access to their local doctor (who obviously have limited knowledge on
the disease), and i am sure we have all experienced that blank stare
when you mention this disease to a new doctor!! I am hoping that in
addition to our own doctors who may want to contact each other with
specific questions, that we may also get a physiotherapist on here,
and possibly a psychologist, geneticist, pharmacist and/or pain doctor
to help with our many questions on this very rare disease. In numbers
and medical research we will find our strength and cure!!

I wish you and Lillian all the best in the future and hope we become
good friends over the ensueing months.
Take care,
Lauren xxoo

Ps. My right side is also much bigger than my left side which has
been causing me severe sciatic nerve pain and degenerative spinal
problems recently, resulting in Sciatica and difficulty walking,
driving, sitting, sleeping and standing over the last 7 weeks. I have
had my left shoe built up by 2cms to balance me out, and i have been
getting twice weekly ultrasound therapy to relieve some of the pain.

[gemtwinks]

Dear Elsa,

I am also new to this group. I have CED, but haven't had many problems
(some pain and weakness, not much at all) until the last 2 months or
so. I'm 43, but have known about CED since I was a teenager. I have
suddenly had a lot of weakness in one leg. Stairs are getting to be
difficult. I have noticed (as noted by Lauren) when given prednisone
for asthma or other issues, my pain is greatly decreased. I've gotten
so used to the constant aches that it's very surprising when it stops
for a while. Soft fluffy synthetic (acrylic) athletic socks help keep
my toes almost warm. I'm in the beginning stages of finding a doc who
will help me manage symptoms. So far I've seen my family doctor, a
neurologist (for the weakness), had MRI, X-rays, an electromyelogram
and will be seeing a rheumatologist soon. My ENT is doing a CT scan in
a couple of weeks to try to decide if fixing my deviated septum could
make any thickening in my skull worse by aggravation. I had some
pretty interesting thickening in my jaw soon after having my wisdom
teeth removed, and he's concerned that the trauma triggered the new
growth. Please read ALL the posts. There is a list of useful links
that I found fabulously helpful. I printed out info from one of them
and hand it to all my doctors now. It helps with the blank stare
problems.

I have also had an increase in pain lately. It has caused me to cancel
a few activities my husband and I had planned to participate in with a
group of friends. He doesn't really understand, but he does try to
empathize. I encourage him to go without me, but he won't do that very
often. My right leg weakness has caused bursitis in that hip, and I
just can't get comfortable anymore. I added a 3 inch "memory foam"
topper to my mattress and have been sleeping with heating pads and
lots of pillows for support. That helps quite a bit.

Question for anyone who might care to answer... Does anybody else have
a cold nose in addition to hands and feet? My husband thinks this is
hilarious. I think it's just because my nose is kind of large and the
end of it sits so far from my face. ; )

I was very happy to find all of you. I'm at the beginning of my
journey and it's wonderful to have found people who have already
walked that path.

Happy thoughts to all,

Sheryl