--Hi Kristina,
I'm new at this, but I have the same problem pretty frequently. Honestly, I
thought that
happened to everyone! I can't feel any tumors in my abdomen, but it sure has
grown
recently. Sometimes after one of those "spasms" it just keeps hurting all day.
I'm a new
member, but I just had to answer this one.
Pamela

Wow...did you guys see this?

Pretty crazy.

http://articles.news.aol.com/news/_a/couple-charged-in-home-
liposuction/20060731143009990011

Yes, something is certainly missing: Your name??

But whoever you are, you are intitled to your opinion as I am to
mine. I find it most unlikely that our disease has anything in
common with the Gulf War Syndrom, even though that is bad, too.
Lipomas can come from a lot of reasons, as can e.g. a headache.

To me DD is much more than just lipomas, it is a disease that is
settled in all of our body. Having lipomas does not make anyone
tired, if they were just lipomas. Having lipomas does not make me
unable to walk, if they were just lipomas. There has got to be more
to it.
Nerve lesions? Changings in cells? Changings in bones? Changings in
cromosomes? Changings in blood? Who knows?

I find it hard to believe that environment is the cause of the
disease. But various things in life can bring a "dormant" disease to
life, like stress, traumas etc.

Just my 2 cents
Dorrit


--- In Dercums_Disease@yahoogroups.com, "upny51" <jrsun@...> wrote:
>
> Just because it is taking place 100 years after DD was described
for the
> first time, why should it be considered impossible that a study of
> lipomas in Gulf War veterans could not lead to the discovery of
some
> important common factor useful to all of us?    Sure, many of us
had
> lipomas long before the Gulf War, but does that make it
inconceivable
> that some factor or set of factors found in the cases of these
veterans
> could turn out to be common to our own experiences years
earlier?   Am I
> missing something here?
> --- In Dercums_Disease@yahoogroups.com, "Dorrit Hvam" <fiori68@>
> wrote:
> >
> > The Gulf War certainly did not take place before 1888 when Dr.
Francis
> > Dercum described DD for the first time.
> > As far as I remember, the Gulf war was about 100 yrs later,
around
> > 1990, when some of us already had lipomas, so they have to be of
a
> > different kind.
> >
> > Any theory is as good as the other as no one knows for sure, but
it
> > has to be cronologically possible.
> >
> > Dorrit
> >
> > --- In Dercums_Disease@yahoogroups.com, sfrobink@ wrote:
> > >
> > > Hi -- this is such an awful disease -- I am currently tracking
a
> > mycoplasma
> > > theory -- if you google for it and also Garth Nicolson's name,
it's
> > a
> > > discussion about this altered bacteria. He's a mycoplasma and
Gulf
> > War vet illness
> > > researcher. He told me Gulf War vets are getting the lipomas.
We
> > really don't
> > > know yet what's going on, so all we can do is try to follow the
> > researcher
> > > ideas. -- Robin
> > >
> >
>

Judi,

That's exactly how mine is, in the exact same place.  The entities
have always been painful and tender, to say the least, but this is a
new experience with this one.  I do have a device to put my socks on
but nothing else.  I am so tired of all of it.

Kristina

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@...>
wrote:
>
> Hi Kristina,
>
> Oh yes, that happens to me all the time!!  If I bend over to
fasten my
> shoes, or pull up my socks, or pick something up that I've dropped
> (which is often!) then I get that pain that is almost like a cramp
high
> up in the left side of my upper abdomen, right under the breast.
I can
> usually massage it away, but it will be tender for awhile
afterward.  I
> bought myself a long-handled shoe horn and no longer have shoes
that
> tie.  Next purchase will be a device that assists in putting socks
on,
> and one of those "grabbers" for reaching things.
>
> I think these buggers have teeth and claws...
>
> Judi
>

Dear Sylvia,

I was so sorry to hear of the loss of your son.  I can't even begin to
imagine how it would feel to lose a child.

May you find comfort in the many wonderful memories that you have of
your son, and keep his spirit alive.

Judi

Hi Kristina,

Oh yes, that happens to me all the time!!  If I bend over to fasten my
shoes, or pull up my socks, or pick something up that I've dropped
(which is often!) then I get that pain that is almost like a cramp high
up in the left side of my upper abdomen, right under the breast.  I can
usually massage it away, but it will be tender for awhile afterward.  I
bought myself a long-handled shoe horn and no longer have shoes that
tie.  Next purchase will be a device that assists in putting socks on,
and one of those "grabbers" for reaching things.

I think these buggers have teeth and claws...

Judi

I don't know if any of you have kids or grandkids that have a
Nintendo DS or DS lite, but they have a neat game called Brain Age.

You do simple little mental exercises that stimulate larger parts of
your brain.

Since my fog brain is probably the most troubling symptom for me
(which says something about how AWFUL the brain fog is, because the
pain isn't exactly a best bud either) I'm loving this thing. I'm
surprised at how much of a difference it's making for me. I've only
done it 3 days out of the last week, and I'm making dramatic
improvements. As sleep deprived as I am, that's pretty cool. :)

I've been in the process of moving out of state, so I've only caught
a glimpse here and there of messages. It looks like Ron had his
surgery, and he and Judi are on the long road to recovery? You're in
my prayers you two.

Anyone else who needs them, they're coming your way too. And any
spoons I can spare. Amen for Red Bull, lidoderm, and anti-
depressants. Between the them I'm functional enough to get through
this process.

Sorry to be such a flake. I'll do better once we get our stuff and
undo all the packing we're doing. Suddenly moving seems like the
biggest exercise in futility. Pack all your stuff up, move it
someplace else, and undo it all. Humph. Strange. Can't wait to get to
Portland tho. Boy is it beautiful.

Crystal

Hello Margie,

Thanks for  your prayers, we were devastated but are recovering. My
reference to R&R was  because that is the term my son used; he served
his country  1980-1986 in the US Army.  He was a construction
superintendent, working on two two stores in New Jersey when he died. He
too was under a lot of stress and had high blood pressure and diabetis
(sp?)

Oh yes,,lipomas went on a vicious rampage!  I now have no doubt stress
or emotional distress affects lipomas. , now I wonder if those
conditions could even produce the condition in those suspectible to
them. My lipomas formed on scar tissue from blunt trauma injuries but
stress could have played a factor in the formation of lipomas on those
scars too.

Take care of yourself,

Sylvia
>

--- In Dercums_Disease@yahoogroups.com, "upny51" <jrsun@...> wrote:

Just because it is taking place 100 years after DD was described for
the first time, why should it be considered impossible that a study of
lipomas in Gulf War veterans could not lead to the discovery of some
important common factor useful to all of us?    Sure, many of us  had
lipomas long before the Gulf War, but does that make it inconceivable
that some factor or set of factors found in the cases of these
veterans could turn out to be common to our own experiences years
earlier?   Am I missing something here?



HISTORY OF MYCOPLASMA

http://www.mycoplasmasupport.org/Web_pages/Mycoplasma_Overview/history
_myco.htm

"Early researchers Koch and Pasteur (O'Shea, 2000) brought bacteria
to the forefront of medicine. However, it was the microbiologists
Nocard and Roux at the Pasteur Institute in 1898 that first isolated
a pathogenic bacteria from cattle that suffered from arthritis and
pneumonia (Answers.com, 2005). The discovery of a similar organism
from humans occurred in 1932..."


Mycoplasmas: Sophisticated, Reemerging, and Burdened by Their
Notoriety

http://www.cdc.gov/ncidod/EID/vol3no1/baseman.htm

"Reports in the 1970s of M. fermentans in the joints of rheumatoid
arthritis patients and in the bone marrow of children with leukemia
raised expectations for its pathogenic potential; these findings have
not been adequately confirmed.

"Sufficient evidence, however, has accumulated recently to establish
an important and emerging role for M. fermentans in human respiratory
and joint diseases.

"For example, M. fermentans has been detected by specific gene
amplification techniques such as polymerase chain reaction (PCR) in
the synovial fluid of patients with inflammatory arthritis, but not
in the joints of patients with juvenile or reactive arthritis.

"In two other studies using PCR, M. fermentans was identified in the
upper respiratory tract of 20% to 44% of both healthy and HIV-
infected patients and was associated with acute respiratory distress
syndrome in nonimmunocompromised persons."

"This does not necessarily mean that these diseases are entirely
caused by mycoplasmal infections, but this type of infection is
important in causing much of the illness seen in people with these
chronic illnesses (Vojdani & Franco, 1999)"

Margie

Dear Sylvia,

Please accept my deepest sympathy in the loss of your son. This is so
tragic. Losing a child is heartbreaking.

Was your son overseas serving our country? The way you mentioned the
R&R made me think so.

I'm sure that this sad situation is throwing your DD in high gear. Do
try to take good care of yourself.

I pray that God will minister His peace to your body, mind, and spirit,
and bring you comforting friends.

Sincerely,
Margie

Have a good and productive trip and say hello to Dr Herbst for all of
us.
We are anxious to hear all about it.

Take care of yourself,
Sylvia

--- In Dercums_Disease@yahoogroups.com, "frincess51" <frincess51@...>
wrote:
>
> Hi All,
> I leave early in the morning to go see Dr. Herbst.  Can't wait to
meet
> this wonderful woman/scientist/doctor/researcher!  Wish I could take
> all of you with me.
> Take care and I will talk to you all when I get back...
> Get to meet Cynthia (can't wait!) and as Judith said, I will miss
> meeting her by hours...too bad :o( - another time, I hope.
> All the best,
> Carole
>

Let me first wish you a happy 49th anniversary, that is remarkable. 
I am six years behind you in age and we will celebrate our 39th anniversary in Feb 2007. so God willing, we will be catching up to you soon
The loss of a child is one of the worst  things I have ever expeirinced. I am really sorry about your neices and  I feel for your sisters. I am hoping time has eased their grief . I have cried for almost a solid month. I can hold back the tears as long as I stay occupied and try not to dwell on things. I know in time it will be better.

Take care of yourself,

Sylvia

--- In Dercums_Disease@yahoogroups.com, "irakel2" <irakel2@...> wrote:
>
> Sylvia I am sorry to hear about your son. That is one of the hardest
> things to go through. I have 2 sisters ones son was murdered and my
> other sisters daughter was killed by a drunk driver. It is so sad and
> it hurts.
>
> I liked your idea about writing down what this disease is doing to us
> and giving it to our children and grandchildren. It will help them
> understand why we act the way we do. Some days I just don't want to be
> touched, and some days my mind is so bad it is hard to say what I want
> to say. I just can't think.
>
> I think I must be the oldest person on this site. I am 66. Next month
> my husband and I will be married 49 years.
>
> Take care of yourself
> Donna
>

How is everyone doing?  I haven't been on the board in a long time due
to other health issues.  I wanted to ask you all if anyone has had a
similar experience to my current problem.  The majority of my tumors
are in my abdomen, and there are many.  I went to a wedding yesterday
and didn't do anything unusual or out of the ordinary compared to any
other day.  When I got home and had to bend over for something I had a
terribly excruciating pain in my upper abdomen, left ribcage area.  I
have at least 5 tumors there that I can palpate and where the pain was
it was no small surprise that there is a prominent one there that is
exquisitely painful suddenly (even more than normal).  The pain
happens if I bed over or turn my torso sideways for any reason.  It's
almost as if the tumor suddenly was displaced and perhaps is twisting
a nerve or something (only way I can describe it).  Has anyone else
experienced a sudden flare like this?  If so, did it ever work itself
out?  This is more pain than even I can take, and I've taken a lot!
Any info would be appreciated.

Kristina in NC

Just because it is taking place 100 years after DD was described for the
first time, why should it be considered impossible that a study of
lipomas in Gulf War veterans could not lead to the discovery of some
important common factor useful to all of us?    Sure, many of us  had
lipomas long before the Gulf War, but does that make it inconceivable
that some factor or set of factors found in the cases of these veterans
could turn out to be common to our own experiences years earlier?   Am I
missing something here?
--- In Dercums_Disease@yahoogroups.com, "Dorrit Hvam" <fiori68@...>
wrote:
>
> The Gulf War certainly did not take place before 1888 when Dr. Francis
> Dercum described DD for the first time.
> As far as I remember, the Gulf war was about 100 yrs later, around
> 1990, when some of us already had lipomas, so they have to be of a
> different kind.
>
> Any theory is as good as the other as no one knows for sure, but it
> has to be cronologically possible.
>
> Dorrit
>
> --- In Dercums_Disease@yahoogroups.com, sfrobink@ wrote:
> >
> > Hi -- this is such an awful disease -- I am currently tracking a
> mycoplasma
> > theory -- if you google for it and also Garth Nicolson's name, it's
> a
> > discussion about this altered bacteria. He's a mycoplasma and Gulf
> War vet illness
> > researcher. He told me Gulf War vets are getting the lipomas. We
> really don't
> > know yet what's going on, so all we can do is try to follow the
> researcher
> > ideas. -- Robin
> >
>

Hi All,
I leave early in the morning to go see Dr. Herbst.  Can't wait to meet
this wonderful woman/scientist/doctor/researcher!  Wish I could take
all of you with me.
Take care and I will talk to you all when I get back...
Get to meet Cynthia (can't wait!) and as Judith said, I will miss
meeting her by hours...too bad :o( - another time, I hope.
All the best,
Carole

Sylvia I am sorry to hear about your son. That is one of the hardest
things to go through. I have 2 sisters ones son was murdered and my
other sisters daughter was killed by a drunk driver. It is so sad and
it hurts.

I liked your idea about writing down what this disease is doing to us
and giving it to our children and grandchildren. It will help them
understand why we act the way we do. Some days I just don't want to be
touched, and some days my mind is so bad it is hard to say what I want
to say. I just can't think.

I think I must be the oldest person on this site. I am 66. Next month
my husband and I will be married 49 years.

Take care of yourself
Donna

Judi,

I had to send you this message......

GREAT BIG HUGS TO YOU AND RON!!!!!!

I am glad you are home. Keep the faith, keep the love, I wish you the
best on a speedy recovery for Ron and you to get a break.

Sincerly,

Shawn

And I HATE doing so please don't jump on me, anyone.

But sometimes it becomes necessary to get the message across. This is a
DERCUM'S DISEASE Support group, and, while it is not inappropriate to
bring up new information and throw out new possibilities, it is not
appropriate to discount the disease we have been diagnosed with and
suggest it doesn't exist. That is the same thing our medical
professionals have been doing but with a differnt spin on it.

I will be deleting anything that I think demeans the group or that
demeans the intelligence of the group. I will send an e-mail to that
person privately asking him/her to stop, but I will also delete the
post.

Love you all. Take care. Must go.

Hugggzzzzzz.

Poe

Wonderful news, Judi, that he came through the surgery so well.  Will
keep the prayers coming that it was successful as well for a full
cure!  Take care of yourself and rest as much as you can.  My
thoughts will be with the two of you.
All the best,
Carole

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@...> wrote:
>
> Hi group,
>
> And what a wonderful, caring, supportive group you are!!  Ron's
> surgery went well, if long--over 4 hours.  He started at 9 AM with
> the registration, then first MRI, then placement of a halo frame on
> his head, then a CT scan, and finally the surgery.  They ended up
> doing the bilateral surgery (both sides) as the neurosurgeon said
> that the tremors and rigidity were almost worse in his left side
than
> on the right (where they first showed up.)  Got to his room about 5
> PM, and ate a good dinner about 6 PM.  I got back to the hotel
about
> 8, had a sandwich and crashed!
>
> He is very tired and somewhat sore (has 25 staples in his head,
plus
> the wound on his chest,) and rather wobbly on his feet, so I am
> watching his every move.  He's sleeping right now.  My stress level
> is still high, and will be until Sept. 5 when they turn his
> stimulator unit on, and tell me he is fine.  Whatever pain or
> discomfort I feel for the next several weeks will just have to be
> ignored as his needs come first right now.
>
> I'll check up on you all as I get time, so be as good to each other
> as you have been to us!
>
> Judi
>

Hi group,

And what a wonderful, caring, supportive group you are!!  Ron's
surgery went well, if long--over 4 hours.  He started at 9 AM with
the registration, then first MRI, then placement of a halo frame on
his head, then a CT scan, and finally the surgery.  They ended up
doing the bilateral surgery (both sides) as the neurosurgeon said
that the tremors and rigidity were almost worse in his left side than
on the right (where they first showed up.)  Got to his room about 5
PM, and ate a good dinner about 6 PM.  I got back to the hotel about
8, had a sandwich and crashed!

He is very tired and somewhat sore (has 25 staples in his head, plus
the wound on his chest,) and rather wobbly on his feet, so I am
watching his every move.  He's sleeping right now.  My stress level
is still high, and will be until Sept. 5 when they turn his
stimulator unit on, and tell me he is fine.  Whatever pain or
discomfort I feel for the next several weeks will just have to be
ignored as his needs come first right now.

I'll check up on you all as I get time, so be as good to each other
as you have been to us!

Judi

The Gulf War certainly did not take place before 1888 when Dr. Francis
Dercum described DD for the first time.
As far as I remember, the Gulf war was about 100 yrs later, around
1990, when some of us already had lipomas, so they have to be of a
different kind.

Any theory is as good as the other as no one knows for sure, but it
has to be cronologically possible.

Dorrit

--- In Dercums_Disease@yahoogroups.com, sfrobink@... wrote:
>
> Hi -- this is such an awful disease -- I am currently tracking a
mycoplasma
> theory -- if you google for it and also Garth Nicolson's name, it's
a
> discussion  about this altered bacteria. He's a mycoplasma and Gulf
War vet illness
> researcher. He told me Gulf War vets are getting the lipomas. We
really don't
> know yet what's going on, so all we can do is try to follow the
researcher
> ideas. -- Robin
>

You can read this in my blog but I am posting it here for those who
have not been to my page.

Every lipoma or fatty tissue in my body was on a rampage today, the
pain was severe and I hurt all over. Today would have been our son,
Culley's 45th birthday. He died just three days before he was to
have come home for two weeks of fun and relaxation. He died July 7
and his funeral was Thursday July 13, 2006.

Our youngest son came over to comfort me and later he had questions
about my health. I did not want him to know frustration of having
this incurable, on going condition or the fear I have of knowing my
future is filled with ever increasing painful lumpy, fatty tissues
and knowing the small fatty folds I have will one day envelope me
from my ankles up.

Most of my lipomas are so diffuse that only I can see or feel them
at this point but I showed him a book I made with photos of lipomas
and articles describing Dercums and how lipomas can invade any part
of the human anatomy. I could not adequately explain the brain fog,
the various types of pains caused by lipomas, the tingly crawling
sensations or the effects of changing weather on the aliens beneath
the surface of our skin but he understood that almost anywhere there
is pressure on my body, it hurts and the pain is ever present. I
told him the pain is caused by pressure lipomas put on nerves or
surrounding muscle or tissues. I tried to explain the unexplainable
pains of lipomas and how sometimes I hurt all over but do have rare
days of only mild discomforts and an occasional day or two almost
completely free of any pains. He asked if there was anything that
could be done, I told him I most doctors do not know anymore about
the condition than their patients and the options were limited to
surgical or other invasive removals and in my opinion those should
only be considered if or when the lipomas interfere with bodily
functions or become to painful to live with.



I can not get comfortable, sitting, standing or moving. I have so
many lipomas on the sides of my feet, the soles, the toes and the
ankles. Wearing even the sofest leather sandles still hurts my
feet. Standing, sitting or walking are all painful and I sometimes
limp. I do not wear shoes unless it is necessary. I put a cushion
on the floor to rest my feet on while sitting because just the
pressure of my feet on the floor is painful.

The sides of my hands, the palms, and between my fingers have
painful soft fatty tissues and make my hands swell. I have begun to
extend my left hand for handshakes. The pressure of my hand on any
surface hurts including opening lids, twisting tops, using a pen to
write or holding a spoon to stir and pushing a shopping cart is out
of the question.

There are several lipomas on my elbows and upper arms too. I can not
find a painless way to rest my arm, wrist or elbow on any surface
that is not super soft. Movement of my right arm is so painful I
have virtually lost the use of it.

My neck, collar bones, sternum, ribs and breasts have numerous
lipomas and there are one or two near my underarms. I appear to
heavier than my actual weight because my upper abdomen and waist are
covered with grotesquely swollen lipomas that scream in protest when
I stretch or bend from my waist. I have painful fatty tissue on the
outside of both upper thighs that cause laying on my sides to be
uncomfortable to say the least. I can not lay on my stomach at all
because of the lipoma like growth/swelling inside my stomach and am
unable to lay on my back because I have a herniated lumbar disk so I
am uncomfortable laying down and have difficulty going to sleep or
staying asleep.

A fatty tissue type lipoma has just shown up on the left side of my
face, it is possible more visable because "it is on my face". This
makes the left side of my face look noticably larger than the right.
The swelling almost closes my right nasal passage to and puts
pressure on my sinus cavities causing headaches and interfers with
the vision in my left eye too. The vanity in me is shuddering at the
reflection I may soon see in the mirror.

It is hard for me to adjust to the many life altering changes in my
life so I feel my children deserve to know why I can no longer bend
over to play with my grandchildren or lift them up or let them sit
in my lap or lean against my chest. They need to understand why I
can no longer take long rides or why I do not sit or stay in one
place for long. It is important they understand all of my
limitations so there will be no dissappointing expectations and so
they will know it is not or never was my choice to put a sudden halt
to all the things we once enjoyed together.