M, you may have already found this site:
http://www.rsds.org/index2.html, but it looks to have some good information
and support links.

Megan has my prayers for peace and mostly for good, aggressive treatment,
and wisdom of the people who care for her. I wish she had other than Kaiser
insurance, though. It can be such a circus.

Hugs for your Mommy heart as you try and help her through this.

Kelly C.

M,

prayers coming for both Megan and you. I will join in with a ASA prayer.
Take care sweetie. You hang in there.

I don't know anything about RSD, but I will keep you all in my prayers.

Hugs,
Carole

Heya, M,

   Here's a HUGE site that Painiacs use concerning RSD:

http://www.rsdhope.org/

     What it is is a condition of severe localized pain and all that that
brings with it. If caught early it can be prevented. If not, the sufferer is
stuck with it and needs to find the chronic pain treatment that will work
for them.

     Sleep disturbance for those with RSD/CRPS is also severe and needs to
be treated.

      I know of one sufferer who has an intrathecal pump implant and has
been getting Ketamine in it....Prialt seems not to have been of any use.

       Another sufferer who is using anti-convulsants and opiates is less
able to control the pain.

      A third is in the middle...doing ok now, but worried about the future
of her treatment. ( Fran's daughter, Squish)

       It is a YMMV thing, M, and Megan would benefit from a good pain
management doc.....the anesthesiologist kind, not the physiatrist type.

       Things are pretty calm these days at the chronic dash pain NG so it
would be a good idea for Megan to post there and get some support.

        As for YOU, m'dear...sending healing wishes and good vibes and
stepping them up to the max on April 2 for you. Be especially kind to M,
please? Thanks!

Luv and Hugs from Rosie

Okay Melinda - time to stop.  Too much happening at once again!  Glad to
hear you have your feet up though!

If Megan wants ask her to write to me personally.  I handle chronic pain all
the time and have been through similiar things with the neuropathic pain
since the enbrel.  The treatment is similiar by the sounds of it.  I have
been on pregabilin (lyrica) and it did help but I did find my eyesight was a
bit wonky with it and my insurance did not cover it.  I found gabapentin
works just as well but I have to be careful when I take it and to go up
slowly with it so you don't get fatiqued.  The website says they use the
same for RSD.  I would also ask if it could be used in conjunction with
something like Keppra - a seizure med.  This is a combination for
neuropathic pain and in combination has brought my pain level to about an 8
out of 10.  Stopping 3 times a day to lie down and meditate or to do
relaxation exercises helps (elevating that leg when doing them as well).  I
know this is hard with a child but when they nap etc or while they are
watching 30 minutes of a tv program while in a playpen (I know again not
great but better than someone who is in great pain looking after a child).
Keeping range of motion is mandatory.  this is not the same as just walking
but you would know that.  I find ice or heat on the neuropathic leg is not
always great - it worked better if I had raised my blankets so they didn't
touch and had lukewarm showers or baths.  Not sure if this is the same for
RSD - she might have to experiment.  Antidepressants might be mandatory -
slowly titrating them - both for  the pain relief and for the depression.
As you know this can be really real.

As for complementary - well get her doctor to check her b12 levels.  This
can be low in diabetic neuroprathy, ms, and some other neuropathic things -
wonder if it is the same for RSD.  If true it might take shots - not just
pills.  The usual fish oil pills etc never hurt.  I did find although the
accupuncture helped while I was there and for a couple of hours in the long
run it irritated the nerves more.  There were just too many triggers.  when
I stopped I felt better overall - even though I felt great taking the
treatments during the hour.

I can talk to her about the chronic pain though so feel free to send her
quietly to me.  As you know I am positive and not dreary and will not bash
natural, complementary or allopathic medicine.  She is in a tough place with
Logan too!  I don't know the system down there but if she can get some help
with daycare that might help.  Maybe even a girl scout(not sure what the
older girls are called down there) who would come and play with Logan
several times in his home to help her - that would earn her badges if
nothing else.  I know the girls I helped with here would have loved a
service project like this and the price would have been free and Megan would
be right with them to advice them if needed.

Hang in there Melinda - sending you a piece of my rope.  Disneyland helped
to make it a little longer for me and I have a bit to share.

Kelly

Prayers being said.

Love ya,
Kimmy

Sending Good Thoughts,
{{{{Megan}}}}

GrampaHugs,
Alex,

--

****************************************************
* Love radiating from 45.10n x 93.30w   M/SP Mn
* http://home.comcast.net/~apbarna/
* http://goldenmist.org/ahr_faq/index.html
* http://goldenmist.org/grampahugs/
* http://goldenmist.org/
****************************************************

Melinda...I am so sorry about Megan...I don't know alot about RSD, but that
it is very painful..Also trying to care for a child..
I think that you should gently push her towards A counselor who deals with
Chronic Pain...I know that my pain was only a part of my depression when I
sought therapy...And it is a life saver for me...and while 3 years ago when
I started...I was going every two weeks, I now see him about every  6
weeks...
And for someone who has not ever been to a Pain Management Doctor..but saw
such care for my BIL...that might be a way to go.He had to deal with the VA
until he got his SSDI and the strongest thing they ever gave him was
Ultram...I thought all pain management doctors did was to throw meds at
you...His doctor treats his pain as real and is trying to do all he can to
get  him  out of pain WHILE...he trys to figure out what is causing it...The
first time He saw Tom, he watched him in the waiting room and could tell
that he was in so much pain...He gave him Morphine...Along with his
Neurontin.If at some point my Rheumy thinks I would more benefit from a PM
doctor...I will consider it...

I surely hope she gets some relief...But do push her to see the
counselor...As the depression that comes with Chronic Pain is so real and it
becomes a part of the vicious circle...the pain causes depression which
causes the pain to be worse...
And hugs and prayers for you too Melinda...Please get well soon...and try to
keep your Gymnastics and Circus Acts to a mininimum...
Hugs Cindy

I had a little exposure to RSD when i worked at the teaching hospital, but
just the most intractable cases.  I know our anesthesia clinic would do
permanent epidurals to get the medication directly to the affected nerves.  
This was in the early years of specific pain treatment, before Pain Clinics
became so common and sometimes not wholly trusttworthy.

Anyway, I know they also treated RSD at their clinic, with a variety of
therapies short of the epidurals.  If she and her docs can ever jump through
enough kaiser hoops to get her to a GOOD pain clinic, than she made get some
real help from allopathic medicine.

Don't really know any complementary treatments, though I did have one chiro
who knew a LOT about nerves and was good at such stuff.  He's down in Florida
though so I can't axk him more.  If you can find any complementary med
practitioner of any discipline who really seems to know a lot about RSD
specifically, that would be a place to start.  It's little wonder she's so
depressed.  I've been through severe, but time limited bouts of nerve pain
and I really hate it more than other types of pain I've had.  She's in my
prayers along with you.

Big, big hugs for you with your present immobilities.  New rule in this group
- you are only allowed major injuries to one half of each joint pair at the
same time.  No more messing up your second knee before the first one heals!