----- Original Message -----

From: Pamela Harrison

To: Dercums_Disease@yahoogroups.com

Sent: Tuesday, June 30, 2009 7:04 PM

Subject: Re: Re: [Dercums_Disease] Help! Need pain management info 2

Elaine, I got it.
Pamela

---

From: "echittick@verizon.net" <echittick@verizon.net>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, June 30, 2009 6:44:00 PM
Subject: Re: Re: [Dercums_Disease] Help! Need pain management info 2

I have not had any acknowledgement for my emails or replies if you get these please reply back so I know my emails are getting through

Debra   Hello  I am curious how you even knew you had a problem with your colon?  I am 37 and definitely have been diagnosed with an elongated colon  when I was 8 which I think causes some of our issues or may later. http://emedicine.medscape.com/article/1093486-overviewHave you ever looked into a disease called Gardners syndrome?  It has the lipomas and colon type tumors.  I was initially examined for this. Secondly I take 40mg of Oxycontin up to 8 daily which includes enough for breakthrough pain and 100mg of Lyrica 3 X's a day.  This combo has really helped me tremendously. Lateley I have only needed 4 or 5. I too had the run around with pain doctors myself until I ended up at Mayo Clinic in Mn.  I know Mayo has a branch in Jacksonville.Florida and Arizona.  Additionally you could ask to be refereed to a teaching hospital such as a university.  I was also seen at Indiana university med center.  I would ask Dr. H if she can refer you to a colleague that deals with pain perhaps she has a friend or knows someone who knows someone in the pain field that will listen to her.  Hope I helped a little. --- On Tue, 6/30/09, ffloral28 <ffloral28@...> wrote: From: ffloral28 <ffloral28@...> Subject: [Dercums_Disease] Help! Need pain management info To: Dercums_Disease@yahoogroups.com Date: Tuesday, June 30, 2009, 3:32 PM Hi, I've had dercum' disease for years but didn't know it was dercum's until 2005. There is hardly a place on my body that is not full of lipomas. I did have a wonderful family doctor who treated me for pain with lidocaine patches and oxycodone. He even called Dr. Herbst to talk to her about it. Well, he moved out of state last year about 6 mos. after I was diagnosed with stage 3 colon cancer. My new dr. was not comfortable prescribing the pain meds so he referred me to a pain clinic. The Dr. there had never heard of dd and basically wouldn't listen, questioned the diagnosis and told me I had fibromyalgia. He continued my oxycodone but prescribed a smaller amt. per month and added neurotin. He also said he wanted me off the prednisone I was on (10mg daily) The first several days I was on neurotin the pain was better and I only had to take 2 pain pills instead of the 3-4 I was taking - I was so excited that maybe this new drug would really help - but then the pain got worse again and now I can hardly walk, fatigue has increased, etc. I really wanted to find out about lidocaine IV's, mexitel or liposuction. I wanted a Dr. who would help me with the dd and not be arrogant and refuse to listen. Who wants to see a pain dr. who won't even recognize the disease that is causing the pain? I NEED ADVICE PLEASE! My granddaughters will be coming next week to see me and I can hardly move or function. I don't know how long of a future i've got because of the colon cancer or how many more times I will get to see them. I wish I could go back on the prednisone for when my granddaughters are here so I can get some energy and pain relief. I'm trying to find a new pain dr. How can I find the right one? I feel so sad and depressed. What is your advice on prednisone, narcotic pain meds, lidocaine iv's etc? Any help would be greatly appreciated. I live just south of Cocoa Beach, FL which is about 1 hr from Orlando in case anyone in this area of Florida knows any drs. Thanks so much and God bless each one of you! Debra

Pamela,

That makes sense. Maybe it's not just the wheat in the pizza, but the sauce. I
too am highly allergic to tobacco. If I even smell cigarette smoke, my nose
stuffs up immediately. If I have to breath it for any amount of time, my sinuses
completely stuff up and I feel like I can't breath as well.

One time I was outside Barnse & Noble, waiting for a ride, and I wanted to sit
down. Every bench, there were about four in strategic locations, had a smoker
sitting on it. It was a nightmare, going from bench to bench and having to back
away or pass by the smoke holding my breath.

I was a allergic to tobacco smoke long before any of my other conditions showed
up. I just didn't know it. I wonder how many other things were there before, and
I just didn't know.

Then I start to wonder how long I've actually had this immunity problem. I have
a feeling it was a long time before I knew about it.



--- In Dercums_Disease@yahoogroups.com, Pamela Harrison <ozziespamela@...>
wrote:
>
> "I love potatoes, and now I can hardly eat them. I have other problems with
potatoes."
>
>
>
> ________________________________
> Kim,
>
> Just wanted to mention something about sensitivity to potatoes. I am allergic
to bell peppers and a holistic doctor once told me that is you are allergic or
sensitive to one nightshade vegetable, you will have a problem with ALL of the
nightshades. The nightshades are Tomatoes, Potatoes, Bell Peppers, Rutabaga,
Eggplant and Tobacco. Just FYI.
>
>
> In my case, Bell Peppers and Eggplant make me deathly sick even in small
amounts, while tomatoes just break my skin out. Potatoes upset my stomach if I
eat too much of them or too often. Tobacco was killing me rapidly before I quit
smoking.  Not sre about rutabaga! I haven't eaten any since childhood and I
don't care to risk it now.
>
> Hugs and spoons,
> Pamela
>

Hi,
I've had dercum' disease for years but didn't know it was dercum's until 2005.
There is hardly a place on my body that is not full of lipomas. I did have a
wonderful family doctor who treated me for pain with lidocaine patches and
oxycodone. He even called Dr. Herbst to talk to her about it.  Well, he moved
out of state last year about 6 mos. after I was diagnosed with stage 3 colon
cancer. My new dr. was not comfortable prescribing the pain meds so he referred
me to a pain clinic.  The Dr. there had never heard of dd and basically wouldn't
listen, questioned the diagnosis and told me I had fibromyalgia.  He continued
my oxycodone but prescribed a smaller amt. per month and added neurotin. He also
said he wanted me off the prednisone I was on (10mg daily)

The first several days I was on neurotin the pain was better and I only had to
take 2 pain pills instead of the 3-4 I was taking - I was so excited that maybe
this new drug would really help - but then the pain got worse again and now I
can hardly walk, fatigue has increased, etc.  I really wanted to find out about
lidocaine IV's, mexitel or liposuction. I wanted a Dr. who would help me with
the dd and not be arrogant and refuse to listen. Who wants to see a pain dr. who
won't even recognize the disease that is causing the pain?

I NEED ADVICE PLEASE!  My granddaughters will be coming next week to see me and
I can hardly move or function.  I don't know how long of a future i've got
because of the colon cancer or how many more times I will get to see them.  I
wish I could go back on the prednisone for when my granddaughters are here so I
can get some energy and pain relief.

I'm trying to find a new pain dr. How can I find the right one? I feel so sad
and depressed.

What is your advice on prednisone, narcotic pain meds, lidocaine iv's etc?

Any help would be greatly appreciated.  I live just south of Cocoa Beach, FL
which is about 1 hr from Orlando in case anyone in this area of Florida knows
any drs.

Thanks so much and God bless each one of you!
Debra

Suzi,

I'm sorry to hear that, but I know what you mean. That happens to me with
certain foods too. Especially things with wheat base, like pizza. I feel really
icky in my stomach for days after eating pizza sometimes.

I'm just starting with some of this stuff though. I have sinus allergies all
year now, and a lot more foods are getting to me. I used to be able to eat
everything and I was never allergic to anything. *SIGH*

I love potatoes, and now I can hardly eat them. I have other problems with
potatoes.

Since starting the blood type diet though, even with the red meat, I've gotten
rid of a lot of my stomach problems. I used to get terrible acid reflux. I've
practically eliminated that. I also had some kind of irritable bowel thing going
on. Now I only get that when I cheat and eat potatoes, which I do now and then
because I just love them way too much to give them up completely.

Kim

--- In Dercums_Disease@yahoogroups.com, Suzi More <suzimore92@...> wrote:
>
> I get sick as ever when I eat the red meat now. If I ever cheat again it will
be
> for something grand because I pay for at least two days with stomach pain now.
> Suzi
>
>
>
>
> ________________________________
> From: hazelcat1970 <hazelcat1970@...>
> To: Dercums_Disease@yahoogroups.com
> Sent: Saturday, June 27, 2009 5:47:36 PM
> Subject: [Dercums_Disease] Re: Blood Type Diet
>
>
>
>
>
> Karen,
>
> I prefer the New York steak. Since it's so expensive, that could really keep
me from eating a lot of it.. I feel really good after eating steak. I feel full
and healthy most of the time. My stomach has felt a little different the last
couple of times though. My stomach gets like that with corn or potatoes. I don't
eat pork at all.
>
> I agree though. A good steak now and then is essencial. Good for the taste
buds. lol
>
> Kim
>
> --- In Dercums_Disease@ yahoogroups. com, Karen Krzeminski <kamperk06@ ..>
wrote:
> >
> >
> >
> > "On the diet it says I can eat red meat, but on the Dercums diet, it says
not beef.
> >
> > I'm gonna have to find a happy medium. What do you think?"
> >
> > Hi Kim,
> >
> > I actually feel bad after eating red meat. Now, I don't eat red meat that
often so maybe my body has gotten used to not having it. But, when I eat a good
steak my stomach bloats, I have get painful gas. So I try to stay away but oh
man...you gotta have a good steak once in a while and I choose the Filet
Mignone' (sp?)
> >
> > That's just my two cents...lol
> >
> > Karen K...
> >
> >
> > Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org
> >
> >
> >
> >
> >
> >
> > To: Dercums_Disease@ yahoogroups. com
> > From: hazelcat1970@ ...
> > Date: Tue, 23 Jun 2009 19:37:59 +0000
> > Subject: [Dercums_Disease] Re: Blood Type Diet
> >
> >
> >
> >
> >
> >
> >
> > Bonnie,
> >
> > This summer I'm cutting out almost everything. I'm eating spelt tortillas
and hummus every morning. I don't eat much. I may be losing weight. I'm not sure
yet. I was more worried about getting healthy than losing weight when I started,
but now I think I need both. If you're a type O, cutting a lot of carbs is a
very good thing. It seems like Type O is meat and veggies. On the diet it says I
can eat red meat, but on the Dercums diet, it says not beef. I'm gonna have to
find a happy medium. What do you think?
> >
> > How has cutting carbs worked for you so far?
> >
> > Kim
> >
> > --- In Dercums_Disease@ yahoogroups. com, Bonnie Williams <bonnie4340@ >
wrote:
> > >
> > > i found by cutting carbs i can lose weight but i am diabetic so i still
need carbs.bonnie
> > >
> > > --- On Sun, 6/21/09, Pamela Harrison <ozziespamela@ > wrote:
> > >
> > >
> > > From: Pamela Harrison <ozziespamela@ >
> > > Subject: Re: [Dercums_Disease] Blood Type Diet
> > > To: Dercums_Disease@ yahoogroups. com
> > > Date: Sunday, June 21, 2009, 12:42 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > "Could anyone tell me how to find out about the diet for Dercums sufferers
to lose weight? "
> > >
> > > Kim,
> > > Just go to www.lipomadoc. org and click on recommendations.
> > > Pamela
> > >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > ____________ _________ _________ _________ _________ _________ _
> > Bingâ„¢ brings you maps, menus, and reviews organized in one place. Try it
now.
> > http://www.bing. com/search? q=restaurants& form=MLOGEN& publ=WLHMTAG&
crea=TEXT_ MLOGEN_Core_ tagline_local_ 1x1
> >
>

Rod,

I also get the bloating with certain foods. Mine goes away a lot quicker that a
couple of days. It's usually overnight when the food is out of my system. If
you're talking about the pregnancy belly, I haven't found out how to get rid of
that yet.

Kim

--- In Dercums_Disease@yahoogroups.com, "nomadeclipse" <nomadeclipse@...> wrote:
>
> Hello
>
> How do you guys deal with stomach swelling/bloating?
>
> Can you make your stomach go back down to normal?
>
> Rod
>

Karen,

I prefer the New York steak. Since it's so expensive, that could really keep me
from eating a lot of it. I feel really good after eating steak. I feel full and
healthy most of the time. My stomach has felt a little different the last couple
of times though. My stomach gets like that with corn or potatoes. I don't eat
pork at all.

I agree though. A good steak now and then is essencial. Good for the taste buds.
lol

Kim



--- In Dercums_Disease@yahoogroups.com, Karen Krzeminski <kamperk06@...> wrote:
>
>
>
> "On the diet it says I can eat red meat, but on the Dercums diet, it says not
beef.
>
> I'm gonna have to find a happy medium. What do you think?"
>
> Hi Kim,
>
>  I actually feel bad after eating red meat. Now, I don't eat red meat that
often so maybe my body has gotten used to not having it. But, when I eat a good
steak my stomach bloats, I have get painful gas. So I try to stay away but oh
man...you gotta have a good steak once in a while and I choose the Filet
Mignone' (sp?)
>
> That's just my two cents...lol
>
> Karen K...
>
>
>  Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org
>
>
>
>
>
>
> To: Dercums_Disease@yahoogroups.com
> From: hazelcat1970@...
> Date: Tue, 23 Jun 2009 19:37:59 +0000
> Subject: [Dercums_Disease] Re: Blood Type Diet
>
>
>
>
>
>
>
> Bonnie,
>
> This summer I'm cutting out almost everything. I'm eating spelt tortillas and
hummus every morning. I don't eat much. I may be losing weight. I'm not sure
yet. I was more worried about getting healthy than losing weight when I started,
but now I think I need both. If you're a type O, cutting a lot of carbs is a
very good thing. It seems like Type O is meat and veggies. On the diet it says I
can eat red meat, but on the Dercums diet, it says not beef. I'm gonna have to
find a happy medium. What do you think?
>
> How has cutting carbs worked for you so far?
>
> Kim
>
> --- In Dercums_Disease@yahoogroups.com, Bonnie Williams <bonnie4340@> wrote:
> >
> > i found by cutting carbs i can lose weight but i am diabetic so i still need
carbs.bonnie
> >
> > --- On Sun, 6/21/09, Pamela Harrison <ozziespamela@> wrote:
> >
> >
> > From: Pamela Harrison <ozziespamela@>
> > Subject: Re: [Dercums_Disease] Blood Type Diet
> > To: Dercums_Disease@yahoogroups.com
> > Date: Sunday, June 21, 2009, 12:42 PM
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > "Could anyone tell me how to find out about the diet for Dercums sufferers
to lose weight? "
> >
> > Kim,
> > Just go to www.lipomadoc. org and click on recommendations.
> > Pamela
> >
>
>
>
>
>
>
>
>
>
> _________________________________________________________________
> Bing™  brings you maps, menus, and reviews organized in one place.   Try it
now.
>
http://www.bing.com/search?q=restaurants&form=MLOGEN&publ=WLHMTAG&crea=TEXT_MLOG\
EN_Core_tagline_local_1x1
>

Hello

How do you guys deal with stomach swelling/bloating?

Can you make your stomach go back down to normal?

Rod

----- Original Message -----

From: Suzann Cheney

To: Dercums_Disease@yahoogroups.com

Sent: Friday, June 26, 2009 5:36 AM

Subject: RE: [Dercums_Disease] problems with teeth ?

Understandably so Calle!  I’m sorry I don’t have any experience or knowledge of either of these procedures.  They are of course aware of your DD, and if they are still proposing this surgery, I’m assuming they have taken your disease into account and are ruling in favor of the two surgeries over your DD, is this correct?  Not sure what to make of it, but if it means losing your teeth if you don’t have it done, I’d opt to do it.  Just MHO.

Take care.

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Calle_Kitten
Sent: Thursday, June 25, 2009 4:29 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] problems with teeth ?

Hey all.  I went to a new dentist to get my teeth cleaned, and she decided a deeeper than usual cleaning was necessary.

It really wasnt bad, she did it on two different days, and boy am I glad its over.

However, I have issues.

One tooth has a very very low gum.  2 Years ago, they tried to do a gum transplant, but it failed.  This dentist said I need another one.  However, it is all "connective" tissue, and I know DD causes problems with this.  Any advice anyone ?

Secondly, she found one tooth with total bone loss on one side of it.  She says I need a bone graft.  YIKESSSSSSS.  This is very scary for me.  I broke my knee in 2004, and after 8 months and a surgery, it still had not healed.

Anyone had any experience with either a gum transplant or bone graft in their mouth ?  I gotta tell you, this is really freaking me out.

Hugs.

Calle

----- Original Message -----

From: Suzi More

To: Dercums_Disease@yahoogroups.com

Sent: Thursday, June 25, 2009 5:43 PM

Subject: Re: [Dercums_Disease] problems with teeth ?

I have a dentist who wanted to pull one of my back molars, I had continuos gum infections and hate that deep cleaning but I will go when I have to. I told the dentist to let me put it off because I was beginning a new vitamin called strovite advanced and that someone I knew had had it prescribed for gum disease, That was about three years ago and I have been taking it reigiously since then. I went back last year to the dentist and he could not find anything wrong with that tooth and it was not wobbly like before. I am not lying. I also use baking soda on an electric toothbrush as well as brushing with hyfrogen peroxide and gargling with hyfrogen peroxide. Well, I am in pain 24/7 except for the times I am in the new hot tub that Myron bought last week and the Gabapentin is helping but at least we are allive. I watched the last hours of news and see the stars like Farah and Michael Jackson falling like flies. And I am still here, I think God  wants me here.

Suzi

---

From: Calle_Kitten <calle_kitten@yahoo..com>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, June 25, 2009 4:28:41 PM
Subject: [Dercums_Disease] problems with teeth ?

Hey all.  I went to a new dentist to get my teeth cleaned, and she decided a deeeper than usual cleaning was necessary.

 

It really wasnt bad, she did it on two different days, and boy am I glad its over.

 

However, I have issues.

 

One tooth has a very very low gum.  2 Years ago, they tried to do a gum transplant, but it failed.  This dentist said I need another one.  However, it is all "connective" tissue, and I know DD causes problems with this.  Any advice anyone ?

 

Secondly, she found one tooth with total bone loss on one side of it.  She says I need a bone graft..  YIKESSSSSSS.  This is very scary for me.  I broke my knee in 2004, and after 8 months and a surgery, it still had not healed.

 

Anyone had any experience with either a gum transplant or bone graft in their mouth ?  I gotta tell you, this is really freaking me out.

 

Hugs.

Calle

From: Vicki

To: Dercums_Disease@yahoogroups.com

Sent: Thursday, June 25, 2009 3:43 PM

Subject: Re: [Dercums_Disease] problems with teeth ?

Calle

 

This will be long but please read on!

 

I am so sorry that I am just a negative person.  I been having a hard time with my teeth for the last

6 years.  The dentist will not pull them out. But they will put caps on them!! Hm??  They say I have

beautiful teeth why would I want to pull them out?  Maybe,  I can not afford the root canal then

I can't pay for the cap!  They are all dying.  I started to have to problem when my dercum's got out

of control. 

 

Back in 2007 I had a dentist replace my upper left side with 6 caps 2 had root canals.  The caps were

not put on right and they were hurting me that I could not chew on that side of my mouth.  I found

another dentist and he had to replace 4 caps out of the 6.  My insurance company will not pay for

most of the work because they already paid the first dentist. So now I have to take her to small claims

and my limit is $3,000.00.  My total insurance cost for 2007 was only 1,300.  So I had to pay $4,121.00.

 

I complained to the dentist and the insurance company.  The insurance company said Thank You! to

me but we  don't collect your portion.  I said so I did you a favor an I get nothing.  She says Yep!!

The dentist feels that she was told that she only has to  pay me the co-insurance. However, to the

reports I have different amounts. 

 

So she figures that she only needs to pay me $695 on two teeth.  But in true life the bill came up to

$909.00. a tooth  and half of that is $422.22 the $422.22.  Then there was the x-rays and the others

visits I had gone to go and see specialist.   Then My current dentist work on some other teeth for me

that was not approved by the insurance company and he found de cay under both caps and he also

found 2 cavities on one because of the decay.  My current dentist said that those to teeth should

also be included in the reimbursement because they were capped on wrong.  If they were the

decay would of not been there.

 

After all this, My current dentist told me I should get some teeth back on my right  side.  About 12

years ago I had 2 in the back of my mouth removed.  They have not bothered me once.  No pain at

all!  Anyway, I went to another dentist within the same office to see if they could screw some teeth

into my top of my mouth bones.   She had some mouth x-rays taken.  Asked if I had sinus problems and

if I took anything for it.  My mother always did and my husband does and neither one finds relief from

taking it so I am not going to waste my time and money taking it.   The dentist said that sinus has been

known to make holes through your airways.  I continued to listen to her.  Then I asked her the cost

$12,000.00.  I do not have that kind of money!  My insurance is not going to cover it.  I have no current

problem now.  I have learn something through my experience and listening to everyone else.  I will

never go to a operating room unless I am awake or it is an emergency.  I do not want to be operated

on ever again.  I want to die as I am.  No more surgery. 

 

You have to ask yourself:  How bad is your situation?  Can you live with it?  Can you go and get a

second opinion?  What kind of honors  does the hospital have? What about the Doctor?  Is is just

learning? How many operations has he Done?  Is a trainee going to do it? I am sorry you might not

need this surgery!  My brother-in-law just had a triple bypass surgery.  He is okay now.  However, he

picked up a virual infection of the in tensions.  A deadly kind.  No one could visit him.

 

Isn't that sad!  I stayed away completely.  So now I picked up a chest cold from someone.

I feel like I could sleep!    

 

Hugs Vickie  

---

From: Calle_Kitten <calle_kitten@yahoo.com>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, June 25, 2009 4:28:41 PM
Subject: [Dercums_Disease] problems with teeth ?

Hey all.  I went to a new dentist to get my teeth cleaned, and she decided a deeeper than usual cleaning was necessary.

 

It really wasnt bad, she did it on two different days, and boy am I glad its over.

 

However, I have issues.

 

One tooth has a very very low gum.  2 Years ago, they tried to do a gum transplant, but it failed.  This dentist said I need another one.  However, it is all "connective" tissue, and I know DD causes problems with this.  Any advice anyone ?

 

Secondly, she found one tooth with total bone loss on one side of it.  She says I need a bone graft.  YIKESSSSSSS.  This is very scary for me.  I broke my knee in 2004, and after 8 months and a surgery, it still had not healed.

 

Anyone had any experience with either a gum transplant or bone graft in their mouth ?  I gotta tell you, this is really freaking me out.

 

Hugs.

Calle

Hi Rodney,
I get the stomach bloating when I eat certain foods.  Probably due to allergy, I
suspect.  Maybe you should keep a diary on when it happens for a week or so and
see if you can relate the symptoms to consuming a specific food.  I also get
bloating if I am under a lot of stress or drink too many carbonated beverages. 
I eliminate it by avoiding the triggers and it eventually dissipates on its own
in a day or so.  I don't have an immediate fix for it, sorry!
Take care,
Carole


--- In Dercums_Disease@yahoogroups.com, "nomadeclipse" <nomadeclipse@...> wrote:
>
> Hello
>
> How do you guys deal with stomach swelling/bloating?
>
> Can you make your stomach go back down to normal?
>
> Rod
>

Hello

How do you guys deal with stomach swelling/bloating?

Can you make your stomach go back down to normal?

Rod