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#20092 From: "DAVANA" <lenightmoods@...>
Date: Wed Jan 31, 2007 9:18 pm
Subject: RE: Losing DD fat?
lenightmoods
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            Hello all, I just went to Dr’s for chest and arm pain plus labored breathing thinking something wrong with lungs or heart,

but Dr thinks it is Dercums related so he did Xray. Still haven’t heard results but was wondering if anyone else experienced this with Dercums?  I also have the heat feeling in my legs at night they feel like they’re swelling up and they do get very hot to the touch. My husband used to complain because my legs and feet were always cold now I rest them on him to cool them down and keep moving them in bed to cold spots on the sheets. During the day if I am up they are cold and sometimes blue evn!!! You would think circulation would be better if walking around ??? I am sooo stumped on most of these symptoms I have that I sometimes just want to give up, like our other sufferer who didn’t even want to think about it for awhile! Most of the Drs just give me more morhine and say that’s all they can do for it.  I have heard some are trying growth hormone to get rid of the fat.  I am getting to tired now so gotta go. Lots of Love to you all.

 

-----Original Message-----
From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Jackie Hanan
Sent: Wednesday, January 31, 2007 1:08 AM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] Losing DD fat?

 

I was wondering about something? Dr. Herbst said she could feel the difference between my regular fat, and the DD fat. Dora said at one time to be careful about going on too low of a calorie diet because the DD didn’t like it. I know there have been a few of us here that have lost some weight, but then we stall. I lost 18 lbs, and then I stalled, and have gained back some of it. I also have a lot of edema in my legs, and other areas too.

My question is, if we can’t lose the DD fat, then how do we get rid of it? Are we stuck with it, and more as the disease progresses?

Also, what ever happened to that gal that had her whole body liposuctioned? Amanda, or? Did Lipo get rid of the DD fat, and it didn’t come back? I know lipo’ing regular fat isn’t suppose to come back. I also read that if you have Fibromyalgia you aren’t suppose to have liposuction. I don’t know why?

One last thing, where has everyone been? Dora, Judi, Will, etc?

Smiles, Jackie [NW Oregon]   


#20091 From: "Cynthia" <c_prentice2003@...>
Date: Thu Feb 1, 2007 7:31 am
Subject: Re: Hot/cold
c_prentice2003
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Send Email Send Email
 
Hi there Dorrit,

I too have this problem and even when I am freezing - my lumps are
usually warm to the touch....

And for the last year now my ankles are looking more like balloons
every day as they swell and hurt more. In fact, the DD tissue is
creeping up the insides of my calves and it hurts like hell.

Fed up with the pain - but still keeping going - albeit more slowly
than usual !

Hugs to all,

Cynthia

--- In Dercums_Disease@yahoogroups.com, "Dorrit Hvam" <fiori68@...>
wrote:
>
> Hi folks
> Sorry that I am not posting much. Just wanted to say that when my
> swellings hurt much, they really feel warm, much warmer than other
> places. It has been verified by others, too.
>
> Many people ask me if I have water retained in my feet + ancles as
> they certainly look that way. As for my case it is not water, but
DD
> fat swellings, and they are there constantly, not disappearing from
> time to time.
>
> Anyone with swellings that come and go should surely have the dr.
look
> at it!
>
> Dorrit
>

#20090 From: "Lisa" <l2vc@...>
Date: Thu Feb 1, 2007 5:35 am
Subject: Re: Whining, weather, and pain-Mitzi
l2vc
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--- Pamela Harrison <ozziespamela@...> wrote:

<SNIP>My stomach has been protesting all the ibuprofen I've been popping so I've had to stop taking it. Any suggestions on non-mind altering pain meds that don't cause ulcers??
Anybody??

Hi Pamela,

Both Dr. Herbst ,and another of my doctors, suggested that I start taking either Flaxseed Oil  or Fish Oil Capsules since I cannot take ibuprofen or any Non Steroidal Anti Inflammatory  medications. 

With the Flaxseed Oil capsules, I was told to start with 1000mgs and slowly work my way up to 3000mgs.  I increased the dosage 1000mgs every week up to 3000mgs. 

I do not  know what the proper dosage would be for the Fish Oil.

I suggest you check with your doctor or Dr. Herbst and your pharmacist before starting any new medication!!!  Here are links for both Flaxseed Oil and Fish Oil . http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/fla_0107.shtml (Flax)
http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/fis_0106.shtml  (Fish)

Always be informed on all the medications you take.  Knowledge is GOOD.

I DO FEEL BETTER!!!  Swelling and the pain it causes are reduced and I just feel better in general.  Normally I would be in the midst of a nasty flair with this cruel, cold weather.  Even my multiple forms of arthritis seem to be doing better, and my mood :D.  Maybe this full moon (on Friday) is a good one for me
,
instead of making me more depressed and extra moody #-o.

Take care and think warm, sunny thoughts

Lisa

#20089 From: Pamela Harrison <ozziespamela@...>
Date: Thu Feb 1, 2007 2:33 am
Subject: Re: Re: Whining, weather, and pain-Mitzi
ozziespamela
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Hi Mitzi,
No, you are not a whiner! If it hurts, it hurts! As
I've said before, I am blessed with a ridiculous
(truly abnormal) tolerance for pain.  Today just about
made me cry, though. I wrote that little tidbit after
morning routes. Then the snow hit! I am an out-of
-district bus driver, which means I put about 200
miles a day on the odometer, most of it on the
freeway. Usually I have breaks. Not today. White
knuckled on the steering wheel for 5 hours straight
this afternoon hurt my hands and arms so badly I
wanted to just quit! This was not a big snowstorm, but
made the roads slick enough to cause a 35 car pile-up
on one highway and LOTS of other wrecks on the
others.( I had to call 911 for a rollover I witnessed.
I sure hope they found that car. I saw it run off the
road, roll and disappear over an embankment from the
opposite side of the freeway. All I could do was to
give the police the mile marker.) This explains the
death grip I had on the steering wheel. Anyway, now
I'm home and in my jammies and I'll get up at 4:30 and
do it all over again. (Hopefully without more snow)
Y'all can start taking bets on how much longer I can
do this. My stomach has been protesting all the
ibuprofen I've been popping so I've had to stop taking
it. Any suggestions on non-mind altering pain meds
that don't cause ulcers?? Anybody??

Pamela
--- Mitzi Murray <empoweringwords@...> wrote:

> Gads i am such a whiner.. it was about 45 with about
> 20 mph winds and i was walking home.. about 3 blocks
> and by the time i got home i sat on the floor
> infront of the heater and cried...  shivering makes
> me hurt so bad...   I guess i was more frustrated
> than normal with the pain.
>   but windchill at 17 below.. i am from MT and i
> remember that nasty cold...  yikes..
>
>   Mitzi
>
> Pamela Harrison <ozziespamela@...> wrote:
>           Me too, Judy! I think maybe this bitter
> cold is
> making it hurt even worse. Nothing like pre-tripping
> a
> bus at 6AM when the windchill is
> 17 below zero!
>
> Pamela in also-bitter cold Missouri
> --- nonny46 <nonny46@...> wrote:
>
> > I'm alive, but not kicking--seem to be in a major
> > flare right now.
> > The aliens are not singing, they are waging
> all-out
> > war!
>
>
__________________________________________________________
> Get your own web address.
> Have a HUGE year through Yahoo! Small Business.
> http://smallbusiness.yahoo.com/domains/?p=BESTDEAL
>
>
>
>
>
> Mitten String Theory
> www.mittenstrings.blogspot.com




________________________________________________________________________________\
____
Don't get soaked.  Take a quick peak at the forecast
with the Yahoo! Search weather shortcut.
http://tools.search.yahoo.com/shortcuts/#loc_weather

#20088 From: Mitzi Murray <empoweringwords@...>
Date: Wed Jan 31, 2007 10:55 pm
Subject: Re: RE: Mitzi ........OT Jackie in NW Or
empoweringwords
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Jackie.. the dr. name is Dr. Liptan and she's a resident (intern?) with Legacy hospital and works in the Legacy Clinic at Good Samaritan clinic.  I have applied for legacy charity care but so far have not heard anything.. yes or no.   I think this is one reason we've not gone further for blood tests and such but through the  years i've been tested for many diseases that could present the same as DD.  Of course when the test results come back normal for a disease that a doc was SURE i had, then it's in my head :)...
 
I love this lady.. just the fact that she listens and is willing to learn is such a blessing..  I really wish i could get OHP so i can perhaps get some of the most painful and intrusive tumors removed...
 
She is not going to be in the clinic for Feb..  every couple of months the do rotations at the hospital...
Jackie Hanan <rubyjax@...> wrote:
Mitzy,……..who is the Dr. that agrees with a DD dx for you? She may be a good contact person for our Dr’s. I haven’t seen my PCP yet to let her know that I have my DD dx. I want to get my paperwork together, and have a packet of info for her first. Plus I’m waiting for something official from Dr. H.
Smiles and hugs, Jackie  :-)

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Mitzi Murray
Sent: Wednesday, January 31, 2007 1:25 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Mitzi and Wee5peeps.....RE: [Dercums_Disease] OT Jackie in NW Or
Jackie.  a conference center at one of the hospitals is a great idea!!!!  I can get to any of them with ease as they all have bus stops near them!  I am up for a once a month support group, but i wouldn't mind something more frequent. 
I am not sure if i've got an official dx yet.. i am seeing a doctor who agrees that i have DD, and is helping me with pain meds, but i don't know if shes wrote that in my records or not.. i need to ask her.. her dx and my psychologist dx of borderline personality disorder might help with getting SSI...  if it weren't for good friend and barter i'd be on the streets or in much more pain as i attempted to work at jobs.. probably job hopping a lot as they figure out i can't do much..<sigh>  some day:)
Thanks for replying. i am excited to meet people in person... honestly i want to compare lumps.. LOL...   i have so many kinds... 
Mitzi





Mitten String Theory
www.mittenstrings.blogspot.com

#20087 From: "Dorrit Hvam" <fiori68@...>
Date: Wed Jan 31, 2007 10:07 pm
Subject: Hot/cold
fiori68
Offline Offline
Send Email Send Email
 
Hi folks
Sorry that I am not posting much. Just wanted to say that when my
swellings hurt much, they really feel warm, much warmer than other
places. It has been verified by others, too.

Many people ask me if I have water retained in my feet + ancles as
they certainly look that way. As for my case it is not water, but DD
fat swellings, and they are there constantly, not disappearing from
time to time.

Anyone with swellings that come and go should surely have the dr. look
at it!

Dorrit

#20086 From: Mitzi Murray <empoweringwords@...>
Date: Wed Jan 31, 2007 9:41 pm
Subject: Re: Re: Losing DD fat?
empoweringwords
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Send Email Send Email
 
Gads i am such a whiner.. it was about 45 with about 20 mph winds and i was walking home.. about 3 blocks and by the time i got home i sat on the floor infront of the heater and cried...  shivering makes me hurt so bad...   I guess i was more frustrated than normal with the pain.
but windchill at 17 below.. i am from MT and i remember that nasty cold...  yikes..
 
Mitzi

Pamela Harrison <ozziespamela@...> wrote:
Me too, Judy! I think maybe this bitter cold is
making it hurt even worse. Nothing like pre-tripping a
bus at 6AM when the windchill is
17 below zero!

Pamela in also-bitter cold Missouri
--- nonny46 <nonny46@yahoo.com> wrote:

> I'm alive, but not kicking--seem to be in a major
> flare right now.
> The aliens are not singing, they are waging all-out
> war!

__________________________________________________________
Get your own web address.
Have a HUGE year through Yahoo! Small Business.
http://smallbusiness.yahoo.com/domains/?p=BESTDEAL



Mitten String Theory
www.mittenstrings.blogspot.com

#20085 From: "Jackie Hanan" <rubyjax@...>
Date: Wed Jan 31, 2007 9:40 pm
Subject: RE: Mitzi ........OT Jackie in NW Or
rubyjax7
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Send Email Send Email
 

Mitzy,……..who is the Dr. that agrees with a DD dx for you? She may be a good contact person for our Dr’s. I haven’t seen my PCP yet to let her know that I have my DD dx. I want to get my paperwork together, and have a packet of info for her first. Plus I’m waiting for something official from Dr. H.

 

Smiles and hugs, Jackie  :-)

 

 


From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Mitzi Murray
Sent: Wednesday, January 31, 2007 1:25 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Mitzi and Wee5peeps.....RE: [Dercums_Disease] OT Jackie in NW Or

 

Jackie.  a conference center at one of the hospitals is a great idea!!!!  I can get to any of them with ease as they all have bus stops near them!  I am up for a once a month support group, but i wouldn't mind something more frequent. 

 

I am not sure if i've got an official dx yet.. i am seeing a doctor who agrees that i have DD, and is helping me with pain meds, but i don't know if shes wrote that in my records or not.. i need to ask her.. her dx and my psychologist dx of borderline personality disorder might help with getting SSI...  if it weren't for good friend and barter i'd be on the streets or in much more pain as i attempted to work at jobs.. probably job hopping a lot as they figure out i can't do much..<sigh>  some day:)

 

Thanks for replying. i am excited to meet people in person... honestly i want to compare lumps.. LOL...   i have so many kinds... 

 

Mitzi



#20084 From: Mitzi Murray <empoweringwords@...>
Date: Wed Jan 31, 2007 9:31 pm
Subject: Re: DD fat and heat/cold
empoweringwords
Offline Offline
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Lyonize. once agai it's good to know that i am not crazy or alone...  these are how mine are, too...  places that don't have a lot of normal fat, they go to the bone.. softer places.. the tumors are like donuts and i can stick my fat fingers in the middle.. lol.  Not all are like this, but i noticed another one where the other day, it was a solid mass.
 
Mitzi

barbara croker <lyonziefiddler@...> wrote:
As far as these "dents" (lipoatrophy ) goes how many people know they have them ? on my legs they are near the bone!!! and as far as the chest some are in the middle... I can stick my pointy finger right in them ... they are so weird..
Lyonzie

Mitzi Murray <empoweringwords@yahoo.com> wrote:
Judy.. sucks to be in a flair.. i seem to be in one every day lately...
 
Anyway my beloved does not think they are hotter than the rest of my body... 
 
Now i have some major indentations in my fat.. it's like it either sticks out or it dents in ...  and the places that are dented in are some times as or more painful than the actuall tumors...  I've lost about 5 pounds becasue it's the end of the month :) ( i always gain that back at the begining of the month :( ), and it gets worse.. the indents and lumps always get more noticable when i notice i am not as puffy and swollen. 
 
Dimples are suppose to be cute.. but mine hurt..
 
Mitzi

nonny46 <nonny46@yahoo.com> wrote:
Hi group,

Last week Dr. Mousdicas and I had an interesting conversation, in
that he said he and Dr. Herbst felt that our tumors would register
as cold, feeling that there is not enough blood flow. He was
actually going to prescribe Viagra for me. I told him that my
massage therapist had commented on how HOT areas of my body are, and
he actually felt (gently) all over and could see for himself just
how hot these buggers are, especially the large groups or clusters
of them. My normal body temp is around 96.5, and I would be willing
to bet the huge fist-sized lump in my left buttock would register
over 100!

Also, something else I have noted lately. Last year I had 2 rather
large clusters of lumps removed--one from each forearm. The second
one was the full-thickness biopsy, and the incision scar is about 3
inches long, same as the other one. On both sides, though, the area
has not filled in where the tumors were; in fact where they did the
biopsy, it has sunk in even more. My arms are now very deformed-
looking because of these deep depressions, but there are new lipomas
all around where the scars are--not scar tissue, definite new lumps,
and painful ones.

Well, that's my nickel's worth for today. I'm apparently in the
midst of a major flare--more pain than I have endured in a long
time, and I'm going to go nurse some hot tea and attack my stack of
books to read.

Stay warm, everyone!
Judi




Mitten String Theory
www.mittenstrings.blogspot.com


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Mitten String Theory
www.mittenstrings.blogspot.com

#20083 From: Mitzi Murray <empoweringwords@...>
Date: Wed Jan 31, 2007 9:33 pm
Subject: Re: DD fat and heat/cold
empoweringwords
Offline Offline
Send Email Send Email
 
Thanks.. i researched lipoatrophy a while back, but was not sure that was what it was.. 
 
again. nice to know i am not crazy or alone in all this :)
 
Mitzi

barbara croker <lyonziefiddler@...> wrote:
The Dents are called LIPOATROPHY.. seems like Quite of few of us have those, I have them for a while now.. in my head, legs bac and chest... and some of them hurt..  hang in there seems like it is part of the lovely DD....
good luck...
barbara

Mitzi Murray <empoweringwords@yahoo.com> wrote:
Judy.. sucks to be in a flair.. i seem to be in one every day lately...
 
Anyway my beloved does not think they are hotter than the rest of my body... 
 
Now i have some major indentations in my fat.. it's like it either sticks out or it dents in ...  and the places that are dented in are some times as or more painful than the actuall tumors...  I've lost about 5 pounds becasue it's the end of the month :) ( i always gain that back at the begining of the month :( ), and it gets worse.. the indents and lumps always get more noticable when i notice i am not as puffy and swollen. 
 
Dimples are suppose to be cute.. but mine hurt..
 
Mitzi

nonny46 <nonny46@yahoo.com> wrote:
Hi group,

Last week Dr. Mousdicas and I had an interesting conversation, in
that he said he and Dr. Herbst felt that our tumors would register
as cold, feeling that there is not enough blood flow. He was
actually going to prescribe Viagra for me. I told him that my
massage therapist had commented on how HOT areas of my body are, and
he actually felt (gently) all over and could see for himself just
how hot these buggers are, especially the large groups or clusters
of them. My normal body temp is around 96.5, and I would be willing
to bet the huge fist-sized lump in my left buttock would register
over 100!

Also, something else I have noted lately. Last year I had 2 rather
large clusters of lumps removed--one from each forearm. The second
one was the full-thickness biopsy, and the incision scar is about 3
inches long, same as the other one. On both sides, though, the area
has not filled in where the tumors were; in fact where they did the
biopsy, it has sunk in even more. My arms are now very deformed-
looking because of these deep depressions, but there are new lipomas
all around where the scars are--not scar tissue, definite new lumps,
and painful ones.

Well, that's my nickel's worth for today. I'm apparently in the
midst of a major flare--more pain than I have endured in a long
time, and I'm going to go nurse some hot tea and attack my stack of
books to read.

Stay warm, everyone!
Judi




Mitten String Theory
www.mittenstrings.blogspot.com


Don't be flakey. Get Yahoo! Mail for Mobile and
always stay connected to friends.



Mitten String Theory
www.mittenstrings.blogspot.com

#20082 From: Mitzi Murray <empoweringwords@...>
Date: Wed Jan 31, 2007 9:26 pm
Subject: Re: Clinic on Friday
empoweringwords
Offline Offline
Send Email Send Email
 
Susan.. as i am nw oregon.. i guess i won't be going to the clinic.. i wish i could!!!  Sounds like something wonderful!  I am excited about meeting new friends...  i hope everyone has the opportunity to talk to real people about DD at some time.
 
Mitzi

susan <littleparkersmom@...> wrote:
I just wondered if anybody that is going to Dr. Herbst clinic on Friday would like to meet for coffee or lunch before our appointments.
I would love to meet somebody with the same aliens taking over their bodies, especially since we can all relate to the same symptoms, pains, and etc..  Everyone in this group seems so nice and supportive.
I'm driving from the LA area (anybody want to carpool?) and don't know anything about the area.  Maybe there is a restaurant or coffee place near?
 
Just wondering......
Susan



Mitten String Theory
www.mittenstrings.blogspot.com

#20081 From: Mitzi Murray <empoweringwords@...>
Date: Wed Jan 31, 2007 9:24 pm
Subject: Re: Mitzi and Wee5peeps.....RE: OT Jackie in NW Or
empoweringwords
Offline Offline
Send Email Send Email
 
Jackie.  a conference center at one of the hospitals is a great idea!!!!  I can get to any of them with ease as they all have bus stops near them!  I am up for a once a month support group, but i wouldn't mind something more frequent. 
 
I am not sure if i've got an official dx yet.. i am seeing a doctor who agrees that i have DD, and is helping me with pain meds, but i don't know if shes wrote that in my records or not.. i need to ask her.. her dx and my psychologist dx of borderline personality disorder might help with getting SSI...  if it weren't for good friend and barter i'd be on the streets or in much more pain as i attempted to work at jobs.. probably job hopping a lot as they figure out i can't do much..<sigh>  some day:)
 
Thanks for replying. i am excited to meet people in person... honestly i want to compare lumps.. LOL...   i have so many kinds... 
 
Mitzi

Jackie Hanan <rubyjax@...> wrote:
Hi Mitzi! Good to hear from you again. It is taking me awhile to get use to the idea of having DD too. All those years I’ve done research about it, I kept thinking, it sounded just like what I have, but nawwwwwww, I must be mistaken! Now that I have the dx, it’s made me feel a little sad. I was hoping I could just diet all the fat a way, and I’d get back to my original weight. I now know why I was having such a hard time losing. :-( I agree it will be nice to meet others in person who know what DD is all about.
I think Wee5peeps just posted to let you know she is in our area too. I would like to get a support group started. I can’t meet during the week days as I am not able to go out by myself. A weekend afternoon once a month would work for me. I was thinking about one of the conference rooms at a hosp. Meridian Park Hosp. is close to me, but if another one that would be central to everyone else would be better, than I am flexible. I would even consider having it in my house, but I am about 45 mins S of Portland for now. We are looking to move closer in soon.
Smiles and hugs, Jackie

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Mitzi Murray
Sent: Wednesday, January 31, 2007 8:36 AM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] OT Jackie in NW Or
Hi Jackie...  glad to see you back!  I have been off my email for awhile thinking if i did not read about DD or think about it, it would go away...  Well..  i wasn't really fooling myself, i've just been focusing on other things..  How in the world do we forget about these lumps and pain..
Anyway.. if you are in NW, you might be in Portland.. if you are close, we could get together for coffee and a lump session.. It sure would be nice to talk to others who UNDERSTAND! 
Any one else in the NW oregon area??
Mitzi


Mitten String Theory
www.mittenstrings.blogspot.com



Mitten String Theory
www.mittenstrings.blogspot.com

#20080 From: Mitzi Murray <empoweringwords@...>
Date: Wed Jan 31, 2007 9:16 pm
Subject: Re: OT Jackie in NW Or
empoweringwords
Offline Offline
Send Email Send Email
 
Fantastic! I use our great bus system to get around and it seems that Jackie is south of portland, so as long as it's on a good bus route anywhere would be good for me.  I'd like to meet asap.. :)  no sense in putting this off, I wish i would have thought of it earlier!!
 
Hope your surgery went well :)
 
Mitzi

"wee5peeps@..." <wee5peeps@...> wrote:
Hi Mitzi,

I'm in the Portland area too. I'm working on this, but still groggy from surgery. I've got numbers of a few folks. I'll try and set up a time for us to meet up, maybe in the next week or so. 
Birth doesn't have to hurt!
Tranquil Beginnings
www.easybirth.net
(877) EZ BIRTH



On Jan 31, 2007, at 8:35 AM, Mitzi Murray wrote:

Hi Jackie...  glad to see you back!  I have been off my email for awhile thinking if i did not read about DD or think about it, it would go away...  Well..  i wasn't really fooling myself, i've just been focusing on other things..  How in the world do we forget about these lumps and pain..
 
Anyway.. if you are in NW, you might be in Portland.. if you are close, we could get together for coffee and a lump session.. It sure would be nice to talk to others who UNDERSTAND! 
 
Any one else in the NW oregon area??
 
Mitzi


Mitten String Theory
www.mittenstrings.blogspot.com




Mitten String Theory
www.mittenstrings.blogspot.com

#20078 From: "Jackie Hanan" <rubyjax@...>
Date: Wed Jan 31, 2007 8:22 pm
Subject: Wee5Peeps...RE: OT Jackie in NW Or
rubyjax7
Offline Offline
Send Email Send Email
 

Hi,…….I’m glad you are posting again, and your recovery is going well. Would you mind sharing how many lipomas you had removed, and who your surgeon was? I need to get a tissue sample to Dr. Herbst, and I was thinking of going to a Dermatologist who is familiar with non-painful lipomas, but maybe I should see someone who is actually familiar with DD lipomas?

Thanks, and I hope as the days pass you will feel better, and better.

Smiles, Jackie

p/s I wrote you off line, but I don’t know if you received it? Yahoo was doing some weird things around that time, and sometimes my server has glitches too.

 


From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of wee5peeps@...
Sent: Wednesday, January 31, 2007 11:55 AM
To: Dercums_Disease@yahoogroups.com
Subject: Re: [Dercums_Disease] OT Jackie in NW Or

 

Hi Mitzi,

 

I'm in the Portland area too. I'm working on this, but still groggy from surgery. I've got numbers of a few folks. I'll try and set up a time for us to meet up, maybe in the next week or so.

Birth doesn't have to hurt!

Tranquil Beginnings

www.easybirth.net

(877) EZ BIRTH

 



 

On Jan 31, 2007, at 8:35 AM, Mitzi Murray wrote:



Hi Jackie... glad to see you back! I have been off my email for awhile thinking if i did not read about DD or think about it, it would go away... Well.. i wasn't really fooling myself, i've just been focusing on other things.. How in the world do we forget about these lumps and pain..

Anyway.. if you are in NW, you might be in Portland.. if you are close, we could get together for coffee and a lump session.. It sure would be nice to talk to others who UNDERSTAND!

Any one else in the NW oregon area??

Mitzi



Mitten String Theory
www.mittenstrings.blogspot.com

 


#20077 From: "Jackie Hanan" <rubyjax@...>
Date: Wed Jan 31, 2007 8:12 pm
Subject: Mitzi and Wee5peeps.....RE: OT Jackie in NW Or
rubyjax7
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Send Email Send Email
 

Hi Mitzi! Good to hear from you again. It is taking me awhile to get use to the idea of having DD too. All those years I’ve done research about it, I kept thinking, it sounded just like what I have, but nawwwwwww, I must be mistaken! Now that I have the dx, it’s made me feel a little sad. I was hoping I could just diet all the fat a way, and I’d get back to my original weight. I now know why I was having such a hard time losing. :-( I agree it will be nice to meet others in person who know what DD is all about.

 

I think Wee5peeps just posted to let you know she is in our area too. I would like to get a support group started. I can’t meet during the week days as I am not able to go out by myself. A weekend afternoon once a month would work for me. I was thinking about one of the conference rooms at a hosp. Meridian Park Hosp. is close to me, but if another one that would be central to everyone else would be better, than I am flexible. I would even consider having it in my house, but I am about 45 mins S of Portland for now. We are looking to move closer in soon.

 

Smiles and hugs, Jackie

 


From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Mitzi Murray
Sent: Wednesday, January 31, 2007 8:36 AM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] OT Jackie in NW Or

 

Hi Jackie...  glad to see you back!  I have been off my email for awhile thinking if i did not read about DD or think about it, it would go away...  Well..  i wasn't really fooling myself, i've just been focusing on other things..  How in the world do we forget about these lumps and pain..

 

Anyway.. if you are in NW, you might be in Portland.. if you are close, we could get together for coffee and a lump session.. It sure would be nice to talk to others who UNDERSTAND! 

 

Any one else in the NW oregon area??

 

Mitzi



Mitten String Theory
www.mittenstrings.blogspot.com


#20076 From: "wee5peeps@..." <wee5peeps@...>
Date: Wed Jan 31, 2007 7:54 pm
Subject: Re: OT Jackie in NW Or
mom2js_more
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Send Email Send Email
 
Hi Mitzi,

I'm in the Portland area too. I'm working on this, but still groggy from surgery. I've got numbers of a few folks. I'll try and set up a time for us to meet up, maybe in the next week or so. 
Birth doesn't have to hurt!
Tranquil Beginnings
www.easybirth.net
(877) EZ BIRTH



On Jan 31, 2007, at 8:35 AM, Mitzi Murray wrote:

Hi Jackie...  glad to see you back!  I have been off my email for awhile thinking if i did not read about DD or think about it, it would go away...  Well..  i wasn't really fooling myself, i've just been focusing on other things..  How in the world do we forget about these lumps and pain..
 
Anyway.. if you are in NW, you might be in Portland.. if you are close, we could get together for coffee and a lump session.. It sure would be nice to talk to others who UNDERSTAND! 
 
Any one else in the NW oregon area??
 
Mitzi


Mitten String Theory
www.mittenstrings.blogspot.com


#20075 From: Suzann Cheney <scheney@...>
Date: Wed Jan 31, 2007 7:13 pm
Subject: Re: Clinic on Friday
suzanncheney
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I wish I could say I was going Susan, but carpooling all the way from New  York is not possible!  I hope the visit and clinic are helpful to each of you fortunate enough to be able to go!  

Best wishes!




"susan" <littleparkersmom@...>
Sent by: Dercums_Disease@yahoogroups.com

01/31/2007 02:01 PM

Please respond to
Dercums_Disease@yahoogroups.com

To
Dercums_Disease@yahoogroups.com
cc
Subject
[Dercums_Disease] Clinic on Friday






I just wondered if anybody that is going to Dr. Herbst clinic on Friday would like to meet for coffee or lunch before our appointments.

I would love to meet somebody with the same aliens taking over their bodies, especially since we can all relate to the same symptoms, pains, and etc..  Everyone in this group seems so nice and supportive.

I'm driving from the LA area (anybody want to carpool?) and don't know anything about the area.  Maybe there is a restaurant or coffee place near?

 

Just wondering......

Susan



#20074 From: "susan" <littleparkersmom@...>
Date: Wed Jan 31, 2007 7:01 pm
Subject: Clinic on Friday
littleparker...
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I just wondered if anybody that is going to Dr. Herbst clinic on Friday would like to meet for coffee or lunch before our appointments.

I would love to meet somebody with the same aliens taking over their bodies, especially since we can all relate to the same symptoms, pains, and etc..  Everyone in this group seems so nice and supportive.

I'm driving from the LA area (anybody want to carpool?) and don't know anything about the area.  Maybe there is a restaurant or coffee place near?

 

Just wondering......

Susan


#20073 From: littleparkersmom@...
Date: Wed Jan 31, 2007 1:46 pm
Subject: Re: Dr. Herbst info
littleparker...
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Thanks so much for the info.  I did call and even got to talk to her!  I'm so impressed!  She is so nice and really seems to care!  She scheduled me into her clinic on Friday. 
 
Thanks,
Susan

#20072 From: Pamela Harrison <ozziespamela@...>
Date: Wed Jan 31, 2007 6:29 pm
Subject: Re: Scared and tired!!!!!!!!!!!!!!!!!!!
ozziespamela
Offline Offline
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Hi Rodney,

I have had severe edema in my legs, feet and ankles
for about 8 years now. (Some in hands and face too)
When it first started, it was only in the left ankle,
and it was HUGE!  I was on the road with my job then,
but I went straight to an urgent care center because I
was sure it was a blood clot. (I have a history) The
doc said it was "a little arthritis". Of course, it
wasn't. Fast forward 8 years- both ankles swell and
have large lipomas encircling them, as well as lipomas
on the soles of my feet, and large, diffuse ones
almost covering my calves. I take lasix and it helps
somewhat, but I am always swollen, usually more so on
the left.
I agree with the others. See a doctor and make sure it
is not deep-vein thrombosis before you blame DD.

Pamela
--- nomadeclipse <nomadeclipse@...> wrote:

>
> Hello
>
>
>
> I am still dealing with this edema in my
> extremities!  I have had all of
> the blood work to determine kidney,liver and
> panreatic function.  All of
> them are working as they should.  I cannot fit into
> any type of shoes
> socks leave dents in my legs.  I have a hard time
> decideing if the pain
> in my legs is from the tumors or this additional




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#20071 From: barbara croker <lyonziefiddler@...>
Date: Wed Jan 31, 2007 6:12 pm
Subject: Re: DD fat and heat/cold
lyonziefiddler
Offline Offline
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As far as these "dents" (lipoatrophy ) goes how many people know they have them ? on my legs they are near the bone!!! and as far as the chest some are in the middle... I can stick my pointy finger right in them ... they are so weird..
Lyonzie

Mitzi Murray <empoweringwords@...> wrote:
Judy.. sucks to be in a flair.. i seem to be in one every day lately...
 
Anyway my beloved does not think they are hotter than the rest of my body... 
 
Now i have some major indentations in my fat.. it's like it either sticks out or it dents in ...  and the places that are dented in are some times as or more painful than the actuall tumors...  I've lost about 5 pounds becasue it's the end of the month :) ( i always gain that back at the begining of the month :( ), and it gets worse.. the indents and lumps always get more noticable when i notice i am not as puffy and swollen. 
 
Dimples are suppose to be cute.. but mine hurt..
 
Mitzi

nonny46 <nonny46@yahoo.com> wrote:
Hi group,

Last week Dr. Mousdicas and I had an interesting conversation, in
that he said he and Dr. Herbst felt that our tumors would register
as cold, feeling that there is not enough blood flow. He was
actually going to prescribe Viagra for me. I told him that my
massage therapist had commented on how HOT areas of my body are, and
he actually felt (gently) all over and could see for himself just
how hot these buggers are, especially the large groups or clusters
of them. My normal body temp is around 96.5, and I would be willing
to bet the huge fist-sized lump in my left buttock would register
over 100!

Also, something else I have noted lately. Last year I had 2 rather
large clusters of lumps removed--one from each forearm. The second
one was the full-thickness biopsy, and the incision scar is about 3
inches long, same as the other one. On both sides, though, the area
has not filled in where the tumors were; in fact where they did the
biopsy, it has sunk in even more. My arms are now very deformed-
looking because of these deep depressions, but there are new lipomas
all around where the scars are--not scar tissue, definite new lumps,
and painful ones.

Well, that's my nickel's worth for today. I'm apparently in the
midst of a major flare--more pain than I have endured in a long
time, and I'm going to go nurse some hot tea and attack my stack of
books to read.

Stay warm, everyone!
Judi




Mitten String Theory
www.mittenstrings.blogspot.com


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#20070 From: barbara croker <lyonziefiddler@...>
Date: Wed Jan 31, 2007 6:08 pm
Subject: Re: DD fat and heat/cold
lyonziefiddler
Offline Offline
Send Email Send Email
 
The Dents are called LIPOATROPHY.. seems like Quite of few of us have those, I have them for a while now.. in my head, legs bac and chest... and some of them hurt..  hang in there seems like it is part of the lovely DD....
good luck...
barbara

Mitzi Murray <empoweringwords@...> wrote:
Judy.. sucks to be in a flair.. i seem to be in one every day lately...
 
Anyway my beloved does not think they are hotter than the rest of my body... 
 
Now i have some major indentations in my fat.. it's like it either sticks out or it dents in ...  and the places that are dented in are some times as or more painful than the actuall tumors...  I've lost about 5 pounds becasue it's the end of the month :) ( i always gain that back at the begining of the month :( ), and it gets worse.. the indents and lumps always get more noticable when i notice i am not as puffy and swollen. 
 
Dimples are suppose to be cute.. but mine hurt..
 
Mitzi

nonny46 <nonny46@yahoo.com> wrote:
Hi group,

Last week Dr. Mousdicas and I had an interesting conversation, in
that he said he and Dr. Herbst felt that our tumors would register
as cold, feeling that there is not enough blood flow. He was
actually going to prescribe Viagra for me. I told him that my
massage therapist had commented on how HOT areas of my body are, and
he actually felt (gently) all over and could see for himself just
how hot these buggers are, especially the large groups or clusters
of them. My normal body temp is around 96.5, and I would be willing
to bet the huge fist-sized lump in my left buttock would register
over 100!

Also, something else I have noted lately. Last year I had 2 rather
large clusters of lumps removed--one from each forearm. The second
one was the full-thickness biopsy, and the incision scar is about 3
inches long, same as the other one. On both sides, though, the area
has not filled in where the tumors were; in fact where they did the
biopsy, it has sunk in even more. My arms are now very deformed-
looking because of these deep depressions, but there are new lipomas
all around where the scars are--not scar tissue, definite new lumps,
and painful ones.

Well, that's my nickel's worth for today. I'm apparently in the
midst of a major flare--more pain than I have endured in a long
time, and I'm going to go nurse some hot tea and attack my stack of
books to read.

Stay warm, everyone!
Judi




Mitten String Theory
www.mittenstrings.blogspot.com


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#20069 From: Fabric100@...
Date: Wed Jan 31, 2007 6:00 pm
Subject: Edema, Heat & Lipo
fabric102
Offline Offline
Send Email Send Email
 
Rodney--First, know that you aren't alone.  Surprisingly, my daughter (with the diagnosis) has also been swelling.  She's had everything checked out that one would check out under the circumstances and nothing was found to be the 'cause'.  She did 'balloon up' like you describe after one surgery, gaining 50lbs of fluid and was put on diuretics in the hospital.  She is allergic to most diuretics and the one they just gave her orally to try caused severe intestinal problems.  It is a zoo, isn't it?  You might try, as a first step until you can get help, cutting salt and sugar from your diet.  When I did some research for my daughter, I was very surprised to see that sugar could cause edema.  We all think of salt, but sugar was listed as well.  There are some foods that are natural diuretics--watermelon, cabbage, artichokes, oatmeal, cranberries--are some I remember.  If you google 'diuretic foods' you will easily find a reputable site that will give you quite a list.  I'm NOT prescribing and you definitely want to avoid taking any 'all natural remedies' that might interact with your medications.  Cutting down on sugar and eating some of the foods listed have reduced some of my daughter's edema.  I agree with the post about seeking urgent care, though.  Severe swelling, especially if it is unequal (ie your left leg is significantly larger than the right) can be an indicator of DVT (deep vein thrombosis) or a blood clot in a deep vein.  You don't want to wait or be put off.  As with many of these 'side shows' (love that analogy), you have to check out the usual villians before assigning the cause to Dercum's.  Hang in there!!!

On the heat issue--we have noticed the same thing!  My daughter used Fentanyl pain patches and suddenly starting having trouble with them over dosing her.  Of course, the first response from the prescribing doctor was that it was impossible.  (Anyone heard that line before?)  The dispensing pharmacist called the manufacturer's medical folks and together they did some research.  Their combined explanation was that DD causes 'hot spots' in the body.  The rise in body temperature causes too much of the medication to be released into the body.  Thus, the 'over dosing'.  It is comforting once in awhile to get some validation.

Lipo-my daughter has undergone 4 liposelections with some success.  She is a Type II (I think) Dercum's which means she has more pockets of diseased fat rather than definable tumors. She has tumors, too, but the majority of the DD fat is smooshed out.  The original lipo schedule was for one every 6 weeks througout last year.  Due to problems with surgeons, hospitals, complications, schedules, etc. she only had 4.  The next one is Feb. 9th.  So far, the areas that were lipo'd with the Vaser machine have not filled back in.  A portion of the area which was done by the first surgeon (a disaster) using old-fashioned lipo did not heal very well and did fill partially back in.  The pain, heat and general 'icky' feeling in the areas that were treated with Vaser have been reduced.  Most pronounced is the upper arm and outer thigh area.  She was BORN with a lump on one thigh that was never diagnosed.  No amount of exercise or diet got rid of it.  She went down to about 105lb--and she is 5'6" and big boned--but still had this odd lump.  The plastic surgeon that is treating her now felt it and said, "That's Dercum's!"  He, like someone else mentioned, can 'feel' the difference in Dercum's fat.  Of course, he can't just pull out the Dercum's fat as it is sometimes intertwined with 'normal' fat, but he says with every Dercum's patient that he has had he can tell by the feel of the fat if they have DD or not.

Viagra--I've just heard of this treatment.  Cialus has also been mentioned.  Is this based on research or just a creative doctor's hope?  (AND there is NOTHING wrong with that!)  Just wondering.  It seems to make perfect sense.  I wonder if the cells being deprived of oxygen would lead to the edema, not to mention fatigue and brain fog.  Any ideas?   I would be MOSt interested in hearing more about this therapy as well as if you think it is working.

That's it for me today.  Sadly, I'm now exhibiting symptoms of DD that are difficult to ignore--lumps, bumps, bruises and all.  :(  I'm pretty sure my sister has it and my Mom may.  We could go into the Hall of Fame or something!

Anne

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#20068 From: Pamela Harrison <ozziespamela@...>
Date: Wed Jan 31, 2007 6:07 pm
Subject: Re: DD fat and heat/cold
ozziespamela
Offline Offline
Send Email Send Email
 
Hi Judy,
I absolutely agree with you. My normal temp is 96.4
and my lumps, especially the large ones, are very hot!
My full-thickness biopsy was on the front of my thigh
just above the knee where there were several large
lipomas and it also has not filled in. I do have new,
more painful lipomas where the incisions are. The
drain incision has a particularly nasty one! I'm
pretty sure the surgery triggered the flair I'm in,
along with the seroma and infection I developed, and
then the steroid shot I received when I had the upper
respiratory thing.
I'm praying for both of us to come out of this flair!
Enough is enough!!
Pamela
--- nonny46 <nonny46@...> wrote:

> Hi group,
>
> Last week Dr. Mousdicas and I had an interesting
> conversation, in
> that he said he and Dr. Herbst felt that our tumors
> would register
> as cold, feeling that there is not enough blood
> flow.  He was
> actually going to prescribe Viagra for me.  I told
> him that my
> massage therapist had commented on how HOT areas of
> my body are, and
> he actually felt (gently) all over and could see for
> himself just
> how hot these buggers are, especially the large
> groups or clusters
> of them.  My normal body temp is around 96.5, and I
> would be willing
> to bet the huge fist-sized lump in my left buttock
> would register
> over 100!
>
> Also, something else I have noted lately.  Last year
> I had 2 rather
> large clusters of lumps removed--one from each
> forearm.  The second
> one was the full-thickness biopsy, and the incision
> scar is about 3
> inches long, same as the other one.  On both sides,
> though, the area
> has not filled in where the tumors were; in fact
> where they did the
> biopsy, it has sunk in even more.  My arms are now
> very deformed-
> looking because of these deep depressions, but there
> are new lipomas
> all around where the scars are--not scar tissue,
> definite new lumps,
> and painful ones.
>
> Well, that's my nickel's worth for today.  I'm
> apparently in the
> midst of a major flare--more pain than I have
> endured in a long
> time, and I'm going to go nurse some hot tea and
> attack my stack of
> books to read.
>
> Stay warm, everyone!
> Judi
>
>




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#20067 From: Pamela Harrison <ozziespamela@...>
Date: Wed Jan 31, 2007 5:57 pm
Subject: Re: Re: Losing DD fat?
ozziespamela
Offline Offline
Send Email Send Email
 
Me too, Judy!  I think maybe this bitter cold is
making it hurt even worse. Nothing like pre-tripping a
bus at 6AM when the windchill is
17 below zero!

Pamela in also-bitter cold Missouri
--- nonny46 <nonny46@...> wrote:



> I'm alive, but not kicking--seem to be in a major
> flare right now.
> The aliens are not singing, they are waging all-out
> war!




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#20066 From: Mitzi Murray <empoweringwords@...>
Date: Wed Jan 31, 2007 4:45 pm
Subject: Re: DD fat and heat/cold
empoweringwords
Offline Offline
Send Email Send Email
 
Opps.. i was also going to chime in the body temp thing..  my normal body temp is 96.8 which is challenging to get some one to understand that at 99 degrees, i have a significant fever.. but i was told once that couldn't be really a fever..  the thermometer must be off.. so they tried another..  still.  no fever..
 
Mitzi

nonny46 <nonny46@...> wrote:
Hi group,

Last week Dr. Mousdicas and I had an interesting conversation, in
that he said he and Dr. Herbst felt that our tumors would register
as cold, feeling that there is not enough blood flow. He was
actually going to prescribe Viagra for me. I told him that my
massage therapist had commented on how HOT areas of my body are, and
he actually felt (gently) all over and could see for himself just
how hot these buggers are, especially the large groups or clusters
of them. My normal body temp is around 96.5, and I would be willing
to bet the huge fist-sized lump in my left buttock would register
over 100!

Also, something else I have noted lately. Last year I had 2 rather
large clusters of lumps removed--one from each forearm. The second
one was the full-thickness biopsy, and the incision scar is about 3
inches long, same as the other one. On both sides, though, the area
has not filled in where the tumors were; in fact where they did the
biopsy, it has sunk in even more. My arms are now very deformed-
looking because of these deep depressions, but there are new lipomas
all around where the scars are--not scar tissue, definite new lumps,
and painful ones.

Well, that's my nickel's worth for today. I'm apparently in the
midst of a major flare--more pain than I have endured in a long
time, and I'm going to go nurse some hot tea and attack my stack of
books to read.

Stay warm, everyone!
Judi




Mitten String Theory
www.mittenstrings.blogspot.com

#20065 From: Mitzi Murray <empoweringwords@...>
Date: Wed Jan 31, 2007 4:42 pm
Subject: Re: DD fat and heat/cold
empoweringwords
Offline Offline
Send Email Send Email
 
Judy.. sucks to be in a flair.. i seem to be in one every day lately...
 
Anyway my beloved does not think they are hotter than the rest of my body... 
 
Now i have some major indentations in my fat.. it's like it either sticks out or it dents in ...  and the places that are dented in are some times as or more painful than the actuall tumors...  I've lost about 5 pounds becasue it's the end of the month :) ( i always gain that back at the begining of the month :( ), and it gets worse.. the indents and lumps always get more noticable when i notice i am not as puffy and swollen. 
 
Dimples are suppose to be cute.. but mine hurt..
 
Mitzi

nonny46 <nonny46@...> wrote:
Hi group,

Last week Dr. Mousdicas and I had an interesting conversation, in
that he said he and Dr. Herbst felt that our tumors would register
as cold, feeling that there is not enough blood flow. He was
actually going to prescribe Viagra for me. I told him that my
massage therapist had commented on how HOT areas of my body are, and
he actually felt (gently) all over and could see for himself just
how hot these buggers are, especially the large groups or clusters
of them. My normal body temp is around 96.5, and I would be willing
to bet the huge fist-sized lump in my left buttock would register
over 100!

Also, something else I have noted lately. Last year I had 2 rather
large clusters of lumps removed--one from each forearm. The second
one was the full-thickness biopsy, and the incision scar is about 3
inches long, same as the other one. On both sides, though, the area
has not filled in where the tumors were; in fact where they did the
biopsy, it has sunk in even more. My arms are now very deformed-
looking because of these deep depressions, but there are new lipomas
all around where the scars are--not scar tissue, definite new lumps,
and painful ones.

Well, that's my nickel's worth for today. I'm apparently in the
midst of a major flare--more pain than I have endured in a long
time, and I'm going to go nurse some hot tea and attack my stack of
books to read.

Stay warm, everyone!
Judi




Mitten String Theory
www.mittenstrings.blogspot.com

#20064 From: Mitzi Murray <empoweringwords@...>
Date: Wed Jan 31, 2007 4:35 pm
Subject: OT Jackie in NW Or
empoweringwords
Offline Offline
Send Email Send Email
 
Hi Jackie...  glad to see you back!  I have been off my email for awhile thinking if i did not read about DD or think about it, it would go away...  Well..  i wasn't really fooling myself, i've just been focusing on other things..  How in the world do we forget about these lumps and pain..
 
Anyway.. if you are in NW, you might be in Portland.. if you are close, we could get together for coffee and a lump session.. It sure would be nice to talk to others who UNDERSTAND! 
 
Any one else in the NW oregon area??
 
Mitzi


Mitten String Theory
www.mittenstrings.blogspot.com

#20063 From: "Jackie Hanan" <rubyjax@...>
Date: Wed Jan 31, 2007 3:22 pm
Subject: RE: DD fat and heat/cold
rubyjax7
Offline Offline
Send Email Send Email
 

Hi Judi! Glad to see you posting, but sorry you are in a flare. I’m just coming out of one, but I still feel puny. Regarding the temp of the aliens, hubby tells me mine are HOT to the touch, and I think they are the ones that are inflamed at the time and hurt worse. The other ones that are sleeping have normal temp, but there are hot and cold spots all over my body too.

I hope you feel better soon!

Hugs, Jackie [cold in NW Oregon too]

 

-----Original Message-----
From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of nonny46
Sent: Wednesday, January 31, 2007 7:17 AM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] DD fat and heat/cold

 

Hi group,

 

Last week Dr. Mousdicas and I had an interesting conversation, in

that he said he and Dr. Herbst felt that our tumors would register

as cold, feeling that there is not enough blood flow.  He was

actually going to prescribe Viagra for me.  I told him that my

massage therapist had commented on how HOT areas of my body are, and

he actually felt (gently) all over and could see for himself just

how hot these buggers are, especially the large groups or clusters

of them.  My normal body temp is around 96.5, and I would be willing

to bet the huge fist-sized lump in my left buttock would register

over 100!

 

Also, something else I have noted lately.  Last year I had 2 rather

large clusters of lumps removed--one from each forearm.  The second

one was the full-thickness biopsy, and the incision scar is about 3

inches long, same as the other one.  On both sides, though, the area

has not filled in where the tumors were; in fact where they did the

biopsy, it has sunk in even more.  My arms are now very deformed-

looking because of these deep depressions, but there are new lipomas

all around where the scars are--not scar tissue, definite new lumps,

and painful ones. 

 

Well, that's my nickel's worth for today.  I'm apparently in the

midst of a major flare--more pain than I have endured in a long

time, and I'm going to go nurse some hot tea and attack my stack of

books to read. 

 

Stay warm, everyone!

Judi

 

 

 

 

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#20062 From: "nonny46" <nonny46@...>
Date: Wed Jan 31, 2007 3:16 pm
Subject: DD fat and heat/cold
nonny46
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Hi group,

Last week Dr. Mousdicas and I had an interesting conversation, in
that he said he and Dr. Herbst felt that our tumors would register
as cold, feeling that there is not enough blood flow.  He was
actually going to prescribe Viagra for me.  I told him that my
massage therapist had commented on how HOT areas of my body are, and
he actually felt (gently) all over and could see for himself just
how hot these buggers are, especially the large groups or clusters
of them.  My normal body temp is around 96.5, and I would be willing
to bet the huge fist-sized lump in my left buttock would register
over 100!

Also, something else I have noted lately.  Last year I had 2 rather
large clusters of lumps removed--one from each forearm.  The second
one was the full-thickness biopsy, and the incision scar is about 3
inches long, same as the other one.  On both sides, though, the area
has not filled in where the tumors were; in fact where they did the
biopsy, it has sunk in even more.  My arms are now very deformed-
looking because of these deep depressions, but there are new lipomas
all around where the scars are--not scar tissue, definite new lumps,
and painful ones.

Well, that's my nickel's worth for today.  I'm apparently in the
midst of a major flare--more pain than I have endured in a long
time, and I'm going to go nurse some hot tea and attack my stack of
books to read.

Stay warm, everyone!
Judi

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