Hi Judi,

Sounds like we must look alot alike - except that you must be thinner.
My GI diet did not last the week because I went out for a meal and then
moodiness set in along with chocolate....... Cadbury's of course.

I fall over regularly and never thought it had anything to do with
lipomas, but the ball of "whatever" in my right ankle - which I thought
was torn ligaments - although it is not painful, seems to really stop
me judging stair heights regularly.

Am trying very hard to be good and get some work done around the house -
  it looks like a tip - but energy is lacking.......

Cynthia

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...> wrote:
> Hi ladies,
>
> Last year when I was still seeing our chiropractor, he felt all
> around my kneecaps, and said he could feel these "peas" in many
> different areas, and he agreed they were probably lipomas.  I pointed
> them out to the orthoped. and as he knew nothing about DD, he said he
> really didn't know what they were, only he agreed they didn't belong
> there!  Sometimes it feels like they get pinched between 2 moving
> bones or the knee joint, and then I go down like a ton of bricks.  I
> have a great number of "nodules"/lumps, whatever around my elbows and
> wrists, one ankle, a couple in my fingers, and one lump that is
> causing me difficulty in wearing my wedding band.
>
> I've only lost about 10 lb. so far on the diet, but I can already see
> and feel lumps that I couldn't before, especially around my knees and
> in my abdomen.  I'm still waiting for more energy...
>
> Impatiently,
> Judi

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--from http://arthritis.org/resources/sponsors/Ease_of_Use/eou_pain_relief.asp

Dercum's disease a fatty tissue rheumatism

The main symptom of the disease is generalized or local painful fat with certain inflammatory characteristics. It was described in 1888, i.e., long before the fibromyalgia syndrome was defined. In southern Sweden the name fatty tissue rheumatism has been applied, where the disease does not seem to be particularly rare.
--from http://dercums_data.tripod.com/brorson.html

Diagnosis

The diagnosis, as for fibromyalgia, is made purely clinically ⁽¹⁷⁾. Unlike fibromyalgia there is a relationship between pain and body weight. The pain is either general and is often more severe than in fibromyalgia. An insidious appearance is usual and pain increases with time. Like fibromyalgia, the symptoms of a number of associated diseases are evident (see below). The fundamental criteria here are pain in the fatty tissue and obesity.

The pain is chronic (more than three months' duration), nociceptive, usually symmetrical, but can exceptionally be one-sided for a while after its appearance. Occasionally it can be localized to the upper arm, the thigh or the knee. The pain is described as aching, stabbing, smarting or burning: "it hurts everywhere".
--from http://dercums_data.tripod.com/brorson.html

...Is it my imagination or is there greater acceptance of FM than DD and more research done on FM, often tying it back to other conditions? More than ever seems to happen with DD?

Was DD named first as a disease or FM?

...Is it a continuum - same symptoms but in differing degrees of severity? One end is FM and one end DD with some people plumb in the middle sitting on the dividing fence?...

...I'm hoping that the date I left my job will be counted as the start of
my time of not working.  Not sure because I collected unemployment
compensation. But we can manage if we have to wait an additional six
months, just so they approve me!

Again, thanks all. 

me<>< (Cindy)

My warm Hello,
   I have a rare case of Dercum's.  I've been suffering & surviving
this very painfful diease.  I'm looking for support.  I've been
feeling a bit overwhelmed.  For 3 years in & out of hospitals.  Due
to some results, the tumors on my skull are different, to the too
many to count tumors on my pelvis, stomache, ribs, & legs.  I only
have 3 hours on my legs & that is with 2 pain meds.  I have
specialists in Boston, I live 2.5 hours away in Maine.  No treatment
or cure, just pain meds & follow ups once a month.  I have had 10
surgeries & all of those tumors grew back. Now they are trying to
adjust my pain meds, because I'm in more pain than before.  Thanks to
my Faith & a couple of people I've been able to stay positive.  Just
lately I became worse & wanting to connect with others for support &
any info you can share.  I've watched a lot of people leave my life,
& I'm missing friends & family.  I will never understand why people
leave when you need them the most.  Anyway, I hope you all are having
a "good" day!  I welcome all replies & Thank you for listening.  May
God's Light embrace you with warm healing & blessings.
Peace & love,
Sky
ps- my white count is high & alkaline phros. is high.  I run a fever
& one doc is watching if any of these turn into a rare lymphoma or
rare leukemia.  Does any one else have this or has some other systoms?

--- nonny46 <nonny46@...> wrote:
Dear Judi

Congratulations on your successful dieting!

My heart, even if it is slightly dickie at the moment,
really goes out to you and all those whose have shared
their symptoms.

I know I am very new to all of this and the question
has probably been asked many times before of doctors
and researchers but what is the root cause of all the
lumps and pain? Why are they there?

What can be done about the cause? so that you don't
have new ones appearing and old ones increasing and
have a chance to stop all the pain and uncomfort.

Frustrated but hopeful.....

Dee




---------------------------------
Hi ladies,

Last year when I was still seeing our chiropractor, he
felt all
around my kneecaps, and said he could feel these
"peas" in many
different areas, and he agreed they were probably
lipomas.  I pointed
them out to the orthoped. and as he knew nothing about
DD, he said he
really didn't know what they were, only he agreed they
didn't belong
there!  Sometimes it feels like they get pinched
between 2 moving
bones or the knee joint, and then I go down like a ton
of bricks.  I
have a great number of "nodules"/lumps, whatever
around my elbows and
wrists, one ankle, a couple in my fingers, and one
lump that is
causing me difficulty in wearing my wedding band.

I've only lost about 10 lb. so far on the diet, but I
can already see
and feel lumps that I couldn't before, especially
around my knees and
in my abdomen.  I'm still waiting for more energy...

Impatiently,
Judi






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Dear Feisty

I  believe you are right.

It wasn't until my lump appeared that we suddenly
realized that the calcified lump my mother had removed
from her neck near her thyroid and the "adhesions"
that at the end of her life were removed from her
bowel could have been lipomas.

Until then they were simply described as thyroid and
bowel problems.

Perhaps, in spite, of what many of us are finding
difficult, more people are being given correct
diagnosises by the medical profession as the doctors
become more knowledgeable so the rare isn't so rare
after all.

Or, perish the thought,  are the causes of DD becoming
more  prevalent?

On a happier note, it is a brilliant sunny day in
Sydney after days and days of  non-stop rain and
gloomy greyness. Yippee!

Best Wishes

Dee











--- feisty_in_yorks <c_prentice2003@...>
wrote:


---------------------------------
Hi Judi again,

I too have hard lumps around my knees which until I
really statred
pushing and shoving my fat around to understand,
thought they were
just fat.

But under the fat layer the small hard bits are
definitely growing
into large, side by side lipomas. They are not too
painful - so I'm
not complaining - just fed up that they sem to be just
about
everywhere now.

In fact, the "calcifications" I had removed from both
shoulders in
1990/1991 (in the ligaments) I think were all part of
this exclusive
disease we all have.

I see new numbers joining every day - so is it really
so rare?

feisty

--- In Dercums_Disease@yahoogroups.com, "nonny46"
<nonny46@y...>
wrote:
> Hey Jackie!
>
> Good to hear from you again, and I'm so glad you
*almost* have a
> diagnosis!  Sounds like you have found a doctor who
has it all
> together.  I was interested in what you said about
the pain points
of
> FM, as I have often wondered if it was the FM pain
point that hurt
> when the doctor punched it, or if it was just the
fat and/or
lipomas
> in those areas, or both.  It's kind of like the
chicken/egg--which
> came first, the FM or the DD?  Or did the DD cause
the FM?  Aw
heck,
> who cares, they both hurt!!
>
> Hm, I've got painful nodules around my knees too.  I
mentioned it
to
> the orthoped. and he just sort of ho-hummed around
it, never giving
> me an answer.  My chiro thought they might be
rheumatoid nodules.
> I've read about those, and wonder if DD could cause
a similar type
of
> nodule that isn't actually a soft lipoma?
>
> Uh-oh, more thunderstorms coming (3rd one
today)--better sign off
or
> risk a fried 'puter!
>
> Gentle hugs,
> Judi




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Ooops! My reply should have been addressed

Dear Judi, Jackie and All


Dee



--- Desley Haas <dslyhs@...> wrote:


---------------------------------
Dear Jackie

I will be really interested in what you find our
because the more I research the more confused I'm
becoming on the finer distinctions between FM and DD.

I am..just! ...beginning to understand the differences
in the location of the pain but are the underlying
causes that different?

Is it my imagination or is there greater acceptance of
FM than DD and more research done on FM, often tying
it back to other conditions? More than ever seems to
happen with DD?

Was DD named first as a disease or FM?

Though in Denise Loving's article on Dercum's Hope the
classification of three types of DD are described, it
often appears that it is more Type 3 of "lipomatosis,
nodular type with intense pain in and around mutliple
lipomas" that has more formal recognition as being DD
than Type 1 and 2.

Is it a continuum - same symptoms but in differing
degrees of severity? One end is FM and one end DD with
some people plumb in the middle sitting on the
dividing fence?

What do you think?

Take care

Best Wishes

Dee


--- nonny46 <nonny46@...> wrote:


---------------------------------
Hi Jackie,

Yes, your description of FM fits with what the
rheumatologist told me,
and the therapist who tried to get me to exercise
beyond my
capabilities.  He said that I needed to strengthen the
muscles around
the tendons to relieve the pain.  Well, I tried the
treadmill workout
he recommended, and then switched to gentle stretching
routines, both
of which caused progressively worse pain rather than
better.  I still
do some stretching, but most of my exercise is in the
pool, and even
that results in more pain and weakness immediately
afterward.  The last
time I saw Dr. M. (derm) he said he would agree that I
have early MS,
but wants to do some more workup before a dx is made.

While I agree that FM is a real disease, just as DD
is, I guess it is
possible that a person could have both, but I'm
wondering how many
people are misdiagnosed with FM when they actually
have DD?  I'm going
to ask the derm when I go back in a few weeks if he
would consider
talking with the rheumatology dept. in the same
hospital to see if
there are others (like me) who complained of the
lumps.  I saw a rheum.
in the same hospital 2 years ago who agreed that I may
have DD after
reading the paperwork I brought with me, but that FM
was my main
problem!

Meanwhile, we'll keep on truckin'!

Judi




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Dear Jackie

I will be really interested in what you find our
because the more I research the more confused I'm
becoming on the finer distinctions between FM and DD.

I am..just! ...beginning to understand the differences
in the location of the pain but are the underlying
causes that different?

Is it my imagination or is there greater acceptance of
FM than DD and more research done on FM, often tying
it back to other conditions? More than ever seems to
happen with DD?

Was DD named first as a disease or FM?

Though in Denise Loving's article on Dercum's Hope the
classification of three types of DD are described, it
often appears that it is more Type 3 of "lipomatosis,
nodular type with intense pain in and around mutliple
lipomas" that has more formal recognition as being DD
than Type 1 and 2.

Is it a continuum - same symptoms but in differing
degrees of severity? One end is FM and one end DD with
some people plumb in the middle sitting on the
dividing fence?

What do you think?

Take care

Best Wishes

Dee


--- nonny46 <nonny46@...> wrote:


---------------------------------
Hi Jackie,

Yes, your description of FM fits with what the
rheumatologist told me,
and the therapist who tried to get me to exercise
beyond my
capabilities.  He said that I needed to strengthen the
muscles around
the tendons to relieve the pain.  Well, I tried the
treadmill workout
he recommended, and then switched to gentle stretching
routines, both
of which caused progressively worse pain rather than
better.  I still
do some stretching, but most of my exercise is in the
pool, and even
that results in more pain and weakness immediately
afterward.  The last
time I saw Dr. M. (derm) he said he would agree that I
have early MS,
but wants to do some more workup before a dx is made.

While I agree that FM is a real disease, just as DD
is, I guess it is
possible that a person could have both, but I'm
wondering how many
people are misdiagnosed with FM when they actually
have DD?  I'm going
to ask the derm when I go back in a few weeks if he
would consider
talking with the rheumatology dept. in the same
hospital to see if
there are others (like me) who complained of the
lumps.  I saw a rheum.
in the same hospital 2 years ago who agreed that I may
have DD after
reading the paperwork I brought with me, but that FM
was my main
problem!

Meanwhile, we'll keep on truckin'!

Judi




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Thanks, Kay.

Being able to talk and listen and learn from others
in the group has made a huge difference in getting
things into perspective and feeling less afraid.

While my research methods are rather hit and miss,
searching on the internet, mostly in medical research
papers,  is proving to be fun.

After all these years of being told there are no
answers, I'm discovering there are.

Have found links to lumps + pain + allergies/food
intolerances + chronic fatigue + heart problems +
mental fog + even ....travel....

Take good care

Best Wishes

Dee
--- ToadHill@... wrote:


---------------------------------
Dear Dee,
you surely have some problems there. I certainly hope
that you get some
answers soon.
I,m pleased that your new cardiologist can set your
mind at rest.
Cheers!
Kay~K
----- Original Message -----
From: Desley Haas
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, June 28, 2005 10:04 PM
Subject: Re: [Dercums_Disease] Doctors in Sydney
Australia for new member


Dear Kay

Thank you for your support and kind words.

I first saw the lump on the side and behind my left
knee mid March while showering after being ill since 4
March but the lump could have been there before i
noticed it  as it was quite large.

To my eyes it appears to have shrunk but the recent
MRI showed the lump had almost doubled in size from
the scan that was first taken a month before.

My doctor said the difference in size could have been
that the MRI is far more accurate than the scan.

My other knee as I mentioned before has had the
burning itching feeling many times but showed no
lipoma when scanned.

I've felt "lumps" or swollen "tissue" many times in my
chest where the pain (other than in my legs) has been
for the past three weeks but the swellings shrink,
though they're still sensitive to the touch.

It's because of the severe chest pains that fluctuate
and appear to move from one part of the chest to
another that action has been taken, not because of the
lipoma or DD-like symptoms.

The new cardiologist I saw yesterday is excellent. She
is the only one out of all the doctors involved so far
who has listened to my concerns and acknowledged that
the cardio test that involved iodine injections was
too risky considering my family's medical histories.

And has been the one who told me the truth about the
tests from the heart monitor weeks ago and the ECGs in
hospital that there are heart murmurs and missing
beats. No idea why that was being withheld.

Anyway the doctors want to check out the heart 100%
before they look for any other diagnosis which is fair
enough. So I'll be re-doing 3 days of tests early next
week and hopefully then we can discuss....
hopefully.... whether the other symptoms match DD,
fibromyalgia, Hughes Syndrome or an autoimmune
disorder that hasn't been thought of.

Do you know if anyone else has had chest pains like I
mentioned? or problems with their hearts?

So, in summary, at long last  it feels like things are
beginning to progress and I have a cardiologist I have
confidence in.

Thanks for listening

Best Wishes

Dee






--- ToadHill@... wrote:

> We do all seem to go through weeks, months,
> years...of impatience, frustration, and even anger
> at times . in search of help and medical knowledge
> of our plight.
> It is extremely hard not to be depressed in the
> early stages, and at times in the latter.
> But survive we do:-) And the answers will come
> eventually, even if not now.
> The disease can be extremely hard on our emotional
> resources as well as our physical resources...but
> then..one day we find the help we need, for some it
> is here on this support group, for some it is with
> an understanding doctor, who does not just give us
> lip service for the sake of a dollar, then scurry
> off thinking we are quite mad LOL !
> May I ask how long you have had this lump, and how
> did it seem earlier in your discovery, was it
> smaller ? perhaps like a piece of wheat grain?
> Have you found more 'lumps' , it is usual for DD to
> be composed of many, many 'lumps'.
> For some of us it seems the 'lumps' are benign
> tumors, and very often angiolipomas, others may have
> a diffuse effect .
> Dora here on our support group has many, many
> interesting facts and figures that she can point you
> too, if you need to know more about the disease,
> have you considered all other scenarios ?
> I wish you well, and hope that your quest for
> answers and medical help eventuates in an answer
> that helps you.
> Kay~K
> ----- Original Message -----
>   From: Desley Haas
>   To: Dercums_Disease@yahoogroups.com
>   Sent: Monday, June 27, 2005 8:25 AM
>   Subject: Re: [Dercums_Disease] Doctors in Sydney
> Australia for new member
>
>
>   Dear Kay
>
>   I'm totally impressed by the efforts you all have
>   obviously put in!!!
>
>   You are right. I need to recognize it is going to
> take
>   time.
>
>   I think my impatience is due to the fact it took
> 10
>   years of my life last time a major health issue
>   occurred and at the end, still didn't have a
>   diagnosis.
>
>   At least this time I have a visible lump, greater
>   posssibility of a diagnosis and the groups
>   achievements and experience to draw upon, for
> which
>   I'm very grateful.
>
>   And it is heartening to hear that your doctors
> have
>   been so active and involved.
>
>   With hope and best wishes
>
>   Dee
>
>
>
>   --- ToadHill@... wrote:
>
>   > Hello Dee,
>   > yes I think you have hit the nail on the head so
> to
>   > speak.
>   > There really are not any articles published in
>   > Australia in text form for doctors, nor are
> there
>   > any Australian website entries for Dercums
> Disease.
>   > The only way I could actually get my doctors to
> take
>   > it all on board, was to ask them to research it
>   > themselves by telephoning, and writing to
> overseas
>   > doctors that do have knowledge of the disease,
> they
>   > have also had the fortitude and good grace to
>   > actually take the time to do it.
>   > A lot of information was found by my doctors in
>   > Queensland actually taking a personal interest
> ..and
>   > mentioning it amongst their collegues, and going
>   > back over my family history of the disease... a
>   > painful, and emotional  ( for me)  way to do
> it..as
>   > many family members of mine with DD had passed
> on,
>   > but records were available...and it was
> nessesary.
>   > They then understod the reasoning behind the
>   > research being done by Dr Tomlinson in the UK,
> and
>   > wholeheartedly suport it and my family in same.
>   > During all of this ..it has been quite
> surprising
>   > the number of 'older' physicians who do actually
>   > know of the disease, and have treated the
> symptoms
>   > over the years, whether here in Australia, or
>   > overseas.
>   > You will eventually get the answers you need,
> and
>   > the doctor you need...it just takes time;-)
>   > Best Wishes.
>   > Kay~K
>   >   ----- Original Message -----
>   >   From: Desley Haas
>   >   To: Dercums_Disease@yahoogroups.com
>   >   Sent: Sunday, June 26, 2005 5:47 PM
>   >   Subject: Re: [Dercums_Disease] Doctors in
> Sydney
>   > Australia for new member
>   >
>   >
>   >   Thank you, Kay. Your kinds words are greatly
>   >   appreciated.
>   >
>   >   Well, the dictionary situation explains a lot.
> I
>   > did
>   >   wonder.
>   >
>   >   After one of my doctors told me not to worry
> about
>   > the
>   >   lump, when I first found it  and then weeks
> later
>   > when
>   >   I complained about the pain and swag of
> symptoms
>   > that
>   >   such lumps have no pain and for the rest of
> the
>   >   sypmtoms I should take indigestion pills .....
>   > fine
>   >   for the nausea but how that was suppose to
> help
>   > the
>   >   severe pain in my legs I've never been able to
>   > work
>   >   out!
>   >
>   >   I wasn't amused when I found the definition of
>   >   adiposis in the Oxford Medical Dictionary 1998
> off
>   > a
>   >   local library shelf that contradicted
> everything
>   > they
>   >   had said.
>   >
>   >   If the situation wasn't so serious it really
> would
>   >   make a fine comedy sketch.
>   >
>   >   One thing I have noticed in scanning the
> research
>   >   articles on different sites is that I have
> never
>   > seen
>   >   one produced in Australia? Perhaps that is
> also
>   > part
>   >   of the problem, do you think?
>   >
>   >   Thank you for your support
>   >
>   >   Kind Regards
>   >
>   >   Dee
>   >
>   >
>   >
>   >   --- ToadHill@... wrote:
>   >
>   >   > Hello Dee,
>   >   > I,m an aussie also.  live in Queensland.
>   >   >  I,m sorry , but I do not know of any
> doctors in
>   >   > Sydney for you, only in Victoria, and
>   > Queensland.
>   >   > No matter what the area we live in, it is
>   > extremely
>   >   > hard to find doctors knowledgable about this
>   >   > debilitating disease. It can take years,
> this is
>   > not
>   >   > to make you feel overly concerned , just to
> let
>
=== message truncated ===


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The latest is that my appointment with the cardiologist is on July 25.
That's a good sign, I'm told, because if he'd thought my case urgent,
it wouldn't be almost a month away.  I'll accept that!

Also, I applied for Social Security Disability last week.  Have my
phone interview next Tuesday.  I applied online - 4 hours to fill it
all in!  And then there was printing the releases for the various
doctors and clinics where I've been tested or treated!

I'm hoping that the date I left my job will be counted as the start of
my time of not working.  Not sure because I collected unemployment
compensation. But we can manage if we have to wait an additional six
months, just so they approve me!

Again, thanks all.

me<>< (Cindy)

Hi Jackie, We had a storm cell with lots of cloud to ground
lightening at 2 AM this morning with strong winds. Was a rough night.

You ask,
>>I was interested by your comment about using lambs wool cushion
covers for your butt and back of thighs.  Does the lambs wool help?<<

All I can say is, it sure helps me. I bought a "hide" of lamb fleece
with 7/8" nap. The back side is leather. I originally bought it to
use as decoration, a throw over the sofa.  At first, I just folded it
in half, put this on top of a block of  1 1/2 foam, I had cut to fit
the chair seat.  I found it very comfortable and I can sit much
longer.  Now I have my husband making (I taught him how to sew)
cushions for me. I noticed when I lay on the fleece hide, I do feel
more comfortable, but now for my bed, I am going to order the wool
fleece that is assembled to cotton, so it is machine washable. My
other leather lamb hides are not machine washable. I have not found
much comfort with the memory foam so far. That is just me though and
it may work for others.

>>My hubby massages various creams on my lumps too, and the topical
analgesic help for a little while. I use ones with Emu oil, and MSM,
Aloe, and Capsicum,Chamomile, and other botanicals.<<

I have never used Emu oil yet, often thought about it. I can't break
a way from natural unrefined shea butter though. I melt it in the
microwave and add a couple drops of pure lavender oil which the aroma
is soothing with me. Capsicum burns my skin too much and I usually
wind up washing it off in a hurry! I get relief from Tiger Balm as
it's not so abrasive on my skin. I have had great success adding
peppermint, camphor, eucalyptus and lavender oils to sweet almond oil
base and use for massage.  I have also found relief of pain from
Colonics.

I've studied herbs and alternative healing since I was a teenager but
never "practiced" it too much. Heck, I was never ill until the Lyme's
in 1989. I started "practicing" some alternative medicine after I
found little or no hope with the doctors and loss of faith and trust
in the medical industry.

I need to mention and warn, before you try ANY herb and/or
supplement, consult with doctors of herbal medicine (watch out for
quacks, they all talk good and seem convincing along with the many
companies that "push" herbal products) , ask questions and study,
study, study  the effects of the herb BEFORE you take anything,
especially if you are on any kind of prescription medication and/or
have any kind of health problem. Never believe anything you read that
a remedy will heal you. The use of herbal medicine has become so over
commercialized and marketed, they target people with fears and
desperate about health problems. I find it disgusting.
I'm not taking much in way of prescription medication at this point,
only the pain meds right now. I was taking Alpha Lipoic Acid, Evening
Prime Rose and Vitamin B, for nerve damage and found almost 50%
relief of nerve pain. Although I will not advocate or recommend for
anyone else, this was just my personal experience and not everyone
will have success with it.  I have quit taking the supplements and
the nerve pain is stronger again. But here, I think I might be in for
prescription meds after the biopsy and I don't want to mix all this
together. I am also beginning to wonder about my low carb lifestyle.
Although I had problems before low carbing, and great benefits
from it, I wonder if the higher fat content is contributing some to
my rapid progression.

>>Your experience with the spreading of the lumps are like mine. I
have a hard time breathing at times when the ones on my ribs, and in
the diaphragm muscles are flared up. I haven't had any of them
scanned yet, so I'm not sure exactly how many I have. But it feels
like I am full of them all through my stomach area. Front and back
thighs, upper arms, and I'm wondering if I have them on the bottom of
my right foot now. Hubby says he can't feel any lumps, and it could
be something else, but whatever it is it is extremely painful when I
walk.<<

Well, here's my story and I do apologize for the length of this post.
I'm 44, living in central Wisconsin.
It all started in 1988 when I woke up one morning with severe pain in
the heels of my feet and peas size nodules protruding from around the
sides of my heels. My doctor treated me for an unusual case of gout,
since my triglyserites were elevated at that time. The pain got worse
and the medication didn't work. I was referred to a neurologist
for further testing. They found I had a low score of Lyme's disease
than treated me with antibiotics. I was very sick from the
antibiotics for about 1 1/2 years before my digestive system began to
normalize. A red spot was starting to appear on the tops of my feet,
which has by now spread and covers the whole top of each foot. I was
diagnosed with a harmless case of Granuloma Annulare by the year 2002.

1994 my left hand, small finger, ring finger and part of my middle
finger went numb. By 1995 my arm was wasting away. I had surgery on
the ulnar nerve and it helped but has recently, the last couple of
years, returned.

By 1996  I had numbness and tingling in both hands and arms with a
lot of dull pain with nerves twitching almost daily throughout my
arms and fingers. Suddenly, I was diagnosed with diabetes (6.9 A1C)
and put on oral meds. I  had to try several different meds due to
side effects; low blood sugar and passing out, until I decided to
beat this myself. I changed my lifestyle drastically, went low carb
(I live low carb to this day, lost 70) and I exercised even harder, I
just pushed my way through the pain, tried to ignore it. I did water
aerobics daily, rode my 10 speed and walked a lot. Seldom would miss
a day of exercising, well, I got worse! The doctors kept telling me
to hang in there, it will get better and I believed them until one
day I just could not take it anymore, about 1 1/2 years a go I quit
exercising daily but I continue to drop weight except for my lumpy
areas, they seemed to grow. I try to get back with the program but
exercising seems to make me worse. By now, my A1C had dropped to 5.3
and no longer needed the diabetic medication. (I eat cinnamon for
blood sugar now)  I was beginning to feel lumps and real tender
across my chest.

2001, I went to bed one night and the pain came in my upper arms, on
the "outsides" the biceps muscle area. I thought it was from laying
on them. I could not even touch my arms. A couple days later, I felt
lumps in my upper arms. They feel deep, right against the muscles
like a corn kernel. I had x-rays and blood works but nothing
showed. I felt like I was becoming weaker. I had Carpal Tunnel
Surgery that year and labeled with repetitive strain injury and FM.

The pain and lumps in my arms and chest worsened so my husband and I
studied trigger point therapy together. I was healing my husbands
aches and pains but not mine. However the lumps in my chest seem like
they desensitize so that I could at least tolerate touch and massage.
I think all he did was push them in deeper. I am not sure on this but
my new lumps I just can't touch, too painful.  I began to use a home
made ginger/vodka poultice and that would help drive out other aches
and pains of my joints and muscles but the lumps remained painful at
all times.

Quite frequently throughout the years, just before menses, I would
wind up in the emergency room with pain so bad all I could do is
double over and pray I don't pass out.
For the past 2 years, I have a feeling sensation on the surface of my
skin similar to that of a bug crawling on me and a another sensation
that feels like a drop of boiling water dripping on me. On and off
and at times the cells in my body feel like they are vibrating.

In fall of 2004 new pain started in my legs and I thought I was
getting varicose veins because below the knee and along my shin
bones, the veins began to stick out. It felt and appears like
something was pushing out from the inside, and my shin bones felt
like they were splintering. I had/have swollen areas below the knee,
mid shin bone area. The Neurologist diagnosed me with neuropathy and
gave me cymbalta. The drug was great! The antidepressant was awesome
but like every other antidepressant I tried over the years, I gain
weight and my hair falls out rapidly, but it really helped some with
the pain. Cymbalta covered up all the numbness, pins and needles and
a little bit of some of the pain in my arms and legs but did not
touch the painful lumps I had anywhere every where else in my body
and I began to experience having skeletal pain in the trunk of my
body, where every bone in my body feels stiff and hard to move.  It
reminds me of, rigor mortis setting in while I'm still alive. I quit
the Cymbalta but continued for a while with the Alpha Lipoic Acid and
the problem with my shin bones had disappeared, although I continue
to have problems with my knees.

I can no longer lift my arms above my chest or extend them out away
from my body and I have limited range of motion in my hips/thighs.
That's when the Neurologist, referred me to the Rheumatologist last
month.

I've skipped other details and medical procedures I've had, for my
story this far is long enough! This really does help telling someone
who understands and venting it out, rather than to keep putting it in
the faces of my family and close friends. I've lost so many friends
due to my inactivity and lack of interest in their activities and
expectations. I think the people who have hung in there with us, who
didn't back down really deserve something special and our significant
others who help us through this day in and day out really have to be
special people. No relative on my mother's side had ever complained
of lumps that I know of, but my fathers side has a history of tumors.
My mother was also stricken with Polio about 18 years before she gave
birth to me. And oh my gosh, all the things I put in my mouth when I
was a kid. I'm very interested to know where this all came from,
if in deed this is Dercums or anything else which I  may never figure
out.  I'm at my mid 40's now, had a wonderful, fruitful, life
although the pain, but when I see children born with diseases and
other problems, I know they will never be able to have the quality of
life I had, I feel blessed and very lucky that I made it this far.

Again, I apologize for the length of this post and will try to
keep 'em shorter in the future! lol

Bren

Hi Jackie,

Yes, your description of FM fits with what the rheumatologist told me,
and the therapist who tried to get me to exercise beyond my
capabilities.  He said that I needed to strengthen the muscles around
the tendons to relieve the pain.  Well, I tried the treadmill workout
he recommended, and then switched to gentle stretching routines, both
of which caused progressively worse pain rather than better.  I still
do some stretching, but most of my exercise is in the pool, and even
that results in more pain and weakness immediately afterward.  The last
time I saw Dr. M. (derm) he said he would agree that I have early MS,
but wants to do some more workup before a dx is made.

While I agree that FM is a real disease, just as DD is, I guess it is
possible that a person could have both, but I'm wondering how many
people are misdiagnosed with FM when they actually have DD?  I'm going
to ask the derm when I go back in a few weeks if he would consider
talking with the rheumatology dept. in the same hospital to see if
there are others (like me) who complained of the lumps.  I saw a rheum.
in the same hospital 2 years ago who agreed that I may have DD after
reading the paperwork I brought with me, but that FM was my main
problem!

Meanwhile, we'll keep on truckin'!

Judi

Hi ladies,

Last year when I was still seeing our chiropractor, he felt all
around my kneecaps, and said he could feel these "peas" in many
different areas, and he agreed they were probably lipomas.  I pointed
them out to the orthoped. and as he knew nothing about DD, he said he
really didn't know what they were, only he agreed they didn't belong
there!  Sometimes it feels like they get pinched between 2 moving
bones or the knee joint, and then I go down like a ton of bricks.  I
have a great number of "nodules"/lumps, whatever around my elbows and
wrists, one ankle, a couple in my fingers, and one lump that is
causing me difficulty in wearing my wedding band.

I've only lost about 10 lb. so far on the diet, but I can already see
and feel lumps that I couldn't before, especially around my knees and
in my abdomen.  I'm still waiting for more energy...

Impatiently,
Judi

Just a quick hello to all the newcomers to the group and to say that I
am looking forward to their questions.

This group has saved my life - quite literally so I hope I can help
someone in return.

feisty

Hi Jackie - nice to see you back,

Have you tried that fantastic bodyform foam you can get mattresses
in - it is sooooooooooo soft and comfortable to sit on. I feel sure
they might have them in disabled material stores or the internet.

Take care,

feisty

--- In Dercums_Disease@yahoogroups.com, "Jackie Hanan" <rubyjax@c...>
wrote:
> Hi Bren,...Welcome to the group. I just rejoined everyone. [I went
no mail
> for awhile] I'm Jackie from Oregon, 54, and have MS, Fibromyalgia,
and
> painful lumps all over my body. I was interested by your comment
about using
> lambs wool cushion covers for your butt and back of thighs. Mine
are so bad
> too, and sitting for any length of time is just awful it hurts so
much. Does
> the lambs wool help? Let me know, because right now I have a
flannel sheet
> folded in several layers that I sit on, and it barely helps. My
hubby
> massages various creams on my lumps too, and the topical analgesic
help for
> a little while. I use ones with Emu oil, and MSM, Aloe, and
Capsicum,
> Chamomile, and other botanicals.
> I take Oxy too, and Valium when my muscles spasm. Your experience
with the
> spreading of the lumps are like mine. I have a hard time breathing
at times
> when the ones on my ribs, and in the diaphragm muscles are flared
up. I
> haven't had any of them scanned yet, so I'm not sure exactly how
many I
> have. But it feels like I am full of them all through my stomach
area. Front
> and back thighs, upper arms, and I'm wondering if I have them on
the bottom
> of my right foot now. Hubby says he can't feel any lumps, and it
could be
> something else, but whatever it is it is extremely painful when I
walk.
> Smiles, Jackie
>
>   _____
>
> From: Dercums_Disease@yahoogroups.com
> [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Bren
> Sent: Wednesday, June 29, 2005 12:26 PM
> To: Dercums_Disease@yahoogroups.com
> Subject: [Dercums_Disease] Re: Bren's Intro
>
> Thanks for the "heads-up" Judi,
>
> I've been on pain med's steady for 7 years now. I've tried various
> kinds and experienced the best relief from Vicodin. I am now
taking,
> just started it, Oxycodone, but using them very sparingly.
>
> For me, Tiger Balm works so much better then Ben Gay. I also make
my
> own massage oils and use herbal poultices for temp. relief. My
> husband is wonderful and very giving with the massages. I am in the
> process of making lamb's wool cushion covers for my favorite chairs
> because all of a sudden the clusters emerged to my butt and back of
> my thighs areas.
>
> This last year I have really gone down hill fast. Just recently, I
> can't eat a full meal or drink an 8 oz glass of water at once
because
> the fullness pushes out against the lumps in my abdominal muscles.
> One of the lumps causes instant nausea, it's an unusual horrible
> pain. I have masses of large clusters of them. It's actually
> reshaping my body.
>
> Are there other options beside surgery? I can't imagine having that
> many surgeries. My heart really goes all out to you and all that
> you've gone through.
>
> Bren
>
>
>
>
>
>
>
>
>   _____
>
> YAHOO! GROUPS LINKS
>
> *  Visit your group "Dercums_Disease
> <http://groups.yahoo.com/group/Dercums_Disease> " on the web.
>
> *  To unsubscribe from this group, send an email to:
>  Dercums_Disease-unsubscribe@yahoogroups.com
> <mailto:Dercums_Disease-unsubscribe@yahoogroups.com?
subject=Unsubscribe>
>
> *  Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service
> <http://docs.yahoo.com/info/terms/> .
>
>   _____

Hi Judi again,

I too have hard lumps around my knees which until I really statred
pushing and shoving my fat around to understand, thought they were
just fat.

But under the fat layer the small hard bits are definitely growing
into large, side by side lipomas. They are not too painful - so I'm
not complaining - just fed up that they sem to be just about
everywhere now.

In fact, the "calcifications" I had removed from both shoulders in
1990/1991 (in the ligaments) I think were all part of this exclusive
disease we all have.

I see new numbers joining every day - so is it really so rare?

feisty

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...>
wrote:
> Hey Jackie!
>
> Good to hear from you again, and I'm so glad you *almost* have a
> diagnosis!  Sounds like you have found a doctor who has it all
> together.  I was interested in what you said about the pain points
of
> FM, as I have often wondered if it was the FM pain point that hurt
> when the doctor punched it, or if it was just the fat and/or
lipomas
> in those areas, or both.  It's kind of like the chicken/egg--which
> came first, the FM or the DD?  Or did the DD cause the FM?  Aw
heck,
> who cares, they both hurt!!
>
> Hm, I've got painful nodules around my knees too.  I mentioned it
to
> the orthoped. and he just sort of ho-hummed around it, never giving
> me an answer.  My chiro thought they might be rheumatoid nodules.
> I've read about those, and wonder if DD could cause a similar type
of
> nodule that isn't actually a soft lipoma?
>
> Uh-oh, more thunderstorms coming (3rd one today)--better sign off
or
> risk a fried 'puter!
>
> Gentle hugs,
> Judi

Hi Judi,

That is outrageous and thanks for the info - I have opted out!

Take care,

feisty

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...>
wrote:
> Hey group,
>
> The moderator of another group posted this, and I think it is well
> worth reading and acting:
>
> Yahoo is now using something called "Web Beacons" to track Yahoo
> Group users around the net and see what you're doing and where you
> are going similar to cookies. Yahoo is recording
> every website and every group you visit. Take a look at their
updated
> privacy
> statement:
>
>  http://privacy.yahoo.com/privacy
>
> About half-way down the page, in the section on cookies, you will
> see a link that says web beacons. Click on the phrase web beacons.
> That will bring you to a paragraph entitled "Outside the Yahoo
> Network."
>
> In this section you'll see a little "click here to opt out"
> link that will let you "opt-out" of their new method of snooping.
>
> Once you have clicked that link, you are exempted. Notice the
> "Success" message on the top of the next page. Be careful because
> on that page there is a "Cancel Opt-out" button that, if clicked,
> will *undo** the opt-out.
>
>
> http://privacy.yahoo.com/privacy/us/beacons/details.html

Dear Dee,
you surely have some problems there. I certainly hope that you get some
answers soon.
I,m pleased that your new cardiologist can set your mind at rest.
Cheers!
Kay~K
----- Original Message -----
From: Desley Haas
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, June 28, 2005 10:04 PM
Subject: Re: [Dercums_Disease] Doctors in Sydney Australia for new member


Dear Kay

Thank you for your support and kind words.

I first saw the lump on the side and behind my left
knee mid March while showering after being ill since 4
March but the lump could have been there before i
noticed it  as it was quite large.

To my eyes it appears to have shrunk but the recent
MRI showed the lump had almost doubled in size from
the scan that was first taken a month before.

My doctor said the difference in size could have been
that the MRI is far more accurate than the scan.

My other knee as I mentioned before has had the
burning itching feeling many times but showed no
lipoma when scanned.

I've felt "lumps" or swollen "tissue" many times in my
chest where the pain (other than in my legs) has been
for the past three weeks but the swellings shrink,
though they're still sensitive to the touch.

It's because of the severe chest pains that fluctuate
and appear to move from one part of the chest to
another that action has been taken, not because of the
lipoma or DD-like symptoms.

The new cardiologist I saw yesterday is excellent. She
is the only one out of all the doctors involved so far
who has listened to my concerns and acknowledged that
the cardio test that involved iodine injections was
too risky considering my family's medical histories.

And has been the one who told me the truth about the
tests from the heart monitor weeks ago and the ECGs in
hospital that there are heart murmurs and missing
beats. No idea why that was being withheld.

Anyway the doctors want to check out the heart 100%
before they look for any other diagnosis which is fair
enough. So I'll be re-doing 3 days of tests early next
week and hopefully then we can discuss....
hopefully.... whether the other symptoms match DD,
fibromyalgia, Hughes Syndrome or an autoimmune
disorder that hasn't been thought of.

Do you know if anyone else has had chest pains like I
mentioned? or problems with their hearts?

So, in summary, at long last  it feels like things are
beginning to progress and I have a cardiologist I have
confidence in.

Thanks for listening

Best Wishes

Dee






--- ToadHill@... wrote:

> We do all seem to go through weeks, months,
> years...of impatience, frustration, and even anger
> at times . in search of help and medical knowledge
> of our plight.
> It is extremely hard not to be depressed in the
> early stages, and at times in the latter.
> But survive we do:-) And the answers will come
> eventually, even if not now.
> The disease can be extremely hard on our emotional
> resources as well as our physical resources...but
> then..one day we find the help we need, for some it
> is here on this support group, for some it is with
> an understanding doctor, who does not just give us
> lip service for the sake of a dollar, then scurry
> off thinking we are quite mad LOL !
> May I ask how long you have had this lump, and how
> did it seem earlier in your discovery, was it
> smaller ? perhaps like a piece of wheat grain?
> Have you found more 'lumps' , it is usual for DD to
> be composed of many, many 'lumps'.
> For some of us it seems the 'lumps' are benign
> tumors, and very often angiolipomas, others may have
> a diffuse effect .
> Dora here on our support group has many, many
> interesting facts and figures that she can point you
> too, if you need to know more about the disease,
> have you considered all other scenarios ?
> I wish you well, and hope that your quest for
> answers and medical help eventuates in an answer
> that helps you.
> Kay~K
> ----- Original Message -----
>   From: Desley Haas
>   To: Dercums_Disease@yahoogroups.com
>   Sent: Monday, June 27, 2005 8:25 AM
>   Subject: Re: [Dercums_Disease] Doctors in Sydney
> Australia for new member
>
>
>   Dear Kay
>
>   I'm totally impressed by the efforts you all have
>   obviously put in!!!
>
>   You are right. I need to recognize it is going to
> take
>   time.
>
>   I think my impatience is due to the fact it took
> 10
>   years of my life last time a major health issue
>   occurred and at the end, still didn't have a
>   diagnosis.
>
>   At least this time I have a visible lump, greater
>   posssibility of a diagnosis and the groups
>   achievements and experience to draw upon, for
> which
>   I'm very grateful.
>
>   And it is heartening to hear that your doctors
> have
>   been so active and involved.
>
>   With hope and best wishes
>
>   Dee
>
>
>
>   --- ToadHill@... wrote:
>
>   > Hello Dee,
>   > yes I think you have hit the nail on the head so
> to
>   > speak.
>   > There really are not any articles published in
>   > Australia in text form for doctors, nor are
> there
>   > any Australian website entries for Dercums
> Disease.
>   > The only way I could actually get my doctors to
> take
>   > it all on board, was to ask them to research it
>   > themselves by telephoning, and writing to
> overseas
>   > doctors that do have knowledge of the disease,
> they
>   > have also had the fortitude and good grace to
>   > actually take the time to do it.
>   > A lot of information was found by my doctors in
>   > Queensland actually taking a personal interest
> ..and
>   > mentioning it amongst their collegues, and going
>   > back over my family history of the disease... a
>   > painful, and emotional  ( for me)  way to do
> it..as
>   > many family members of mine with DD had passed
> on,
>   > but records were available...and it was
> nessesary.
>   > They then understod the reasoning behind the
>   > research being done by Dr Tomlinson in the UK,
> and
>   > wholeheartedly suport it and my family in same.
>   > During all of this ..it has been quite
> surprising
>   > the number of 'older' physicians who do actually
>   > know of the disease, and have treated the
> symptoms
>   > over the years, whether here in Australia, or
>   > overseas.
>   > You will eventually get the answers you need,
> and
>   > the doctor you need...it just takes time;-)
>   > Best Wishes.
>   > Kay~K
>   >   ----- Original Message -----
>   >   From: Desley Haas
>   >   To: Dercums_Disease@yahoogroups.com
>   >   Sent: Sunday, June 26, 2005 5:47 PM
>   >   Subject: Re: [Dercums_Disease] Doctors in
> Sydney
>   > Australia for new member
>   >
>   >
>   >   Thank you, Kay. Your kinds words are greatly
>   >   appreciated.
>   >
>   >   Well, the dictionary situation explains a lot.
> I
>   > did
>   >   wonder.
>   >
>   >   After one of my doctors told me not to worry
> about
>   > the
>   >   lump, when I first found it  and then weeks
> later
>   > when
>   >   I complained about the pain and swag of
> symptoms
>   > that
>   >   such lumps have no pain and for the rest of
> the
>   >   sypmtoms I should take indigestion pills .....
>   > fine
>   >   for the nausea but how that was suppose to
> help
>   > the
>   >   severe pain in my legs I've never been able to
>   > work
>   >   out!
>   >
>   >   I wasn't amused when I found the definition of
>   >   adiposis in the Oxford Medical Dictionary 1998
> off
>   > a
>   >   local library shelf that contradicted
> everything
>   > they
>   >   had said.
>   >
>   >   If the situation wasn't so serious it really
> would
>   >   make a fine comedy sketch.
>   >
>   >   One thing I have noticed in scanning the
> research
>   >   articles on different sites is that I have
> never
>   > seen
>   >   one produced in Australia? Perhaps that is
> also
>   > part
>   >   of the problem, do you think?
>   >
>   >   Thank you for your support
>   >
>   >   Kind Regards
>   >
>   >   Dee
>   >
>   >
>   >
>   >   --- ToadHill@... wrote:
>   >
>   >   > Hello Dee,
>   >   > I,m an aussie also.  live in Queensland.
>   >   >  I,m sorry , but I do not know of any
> doctors in
>   >   > Sydney for you, only in Victoria, and
>   > Queensland.
>   >   > No matter what the area we live in, it is
>   > extremely
>   >   > hard to find doctors knowledgable about this
>   >   > debilitating disease. It can take years,
> this is
>   > not
>   >   > to make you feel overly concerned , just to
> let
>
=== message truncated ===


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

From: calvie2

To: Dercums_Disease@yahoogroups.com

Sent: Tuesday, June 28, 2005 6:29 AM

Subject: [Dercums_Disease] Had a stress test last week

Got the results from my GP this morning.  Not good. I had "serious
eschemia" under stress, which indicates one or more blockages.

I'm to see a cardiologist soon - within the week, with a
catheterization more than likely and who knows after that?

The Dercum's has been nuts lately - pain like I've never had before.
I have to force myself to roll over in the morning, and most mornings
I have to take that in stages - just a bit at a time.  A couple of
mornings I've had to ask for pain meds before I even get out of bed
and then I wait an hour before trying again.

Having a heart problem was the last thing I expected.  I really
believed that my gp was being "test-happy." Don't I wish!

Anyway - just thought I'd drop this here to boldly ask for as many
prayers as I can get!

Hope you're all getting through this heatwave (at least in my part of
the States it's miserable) as well as can be expected. Air
conditioning is one of many things for which I'm most thankful!

me<>< (Cindy)

Thanks for the "heads-up" Judi,

I've been on pain med's steady for 7 years now. I've tried various
kinds and experienced the best relief from Vicodin. I am now taking,
just started it, Oxycodone, but using them very sparingly.

For me, Tiger Balm works so much better then Ben Gay. I also make my
own massage oils and use herbal poultices for temp. relief. My
husband is wonderful and very giving with the massages. I am in the
process of making lamb's wool cushion covers for my favorite chairs
because all of a sudden the clusters emerged to my butt and back of
my thighs areas.

This last year I have really gone down hill fast. Just recently, I
can't eat a full meal or drink an 8 oz glass of water at once because
the fullness pushes out against the lumps in my abdominal muscles.
One of the lumps causes instant nausea, it's an unusual horrible
pain. I have masses of large clusters of them. It's actually
reshaping my body.

Are there other options beside surgery? I can't imagine having that
many surgeries. My heart really goes all out to you and all that
you've gone through.

Bren

Dear Judi and Bren

Can I humbly say after I have read what so many of you
have been through for so long and are going through I
have nothing to complain of and I admire people's
courage, strength and spirit to the max !!!!!


Best of luck with the biosopy

Dee





--- nonny46 <nonny46@...> wrote:


---------------------------------
Hi Bren, and welcome!

You are going the right route, I think, by going to a
dermatologist
and having a biopsy of a lump.  I have had more than
30 removed, most
of which were angiolipomas.  So I would suggest giving
the
doctor/surgeon a "heads up" that since they are
painful, they might
well be angiolipomas, which tend to bleed quite a bit.
   And to make
sure they remove the whole thing, not just part of it,
as they do
grow back.  I haven't had them grow in the exact spot
of removal, but
all around where one was removed.

Yes, they can get bigger and multiply.  I am guessing
you have not
gotten anything to relieve your pain or fatigue, so
that is
important.  Many of us have different combinations of
pain/sleep/antidepressant meds, and you may need to
find out what is
best for you personally.  I take Ultram for pain,
Voltaren
(diclofenac)for inflammation, and Remeron to help with
sleep.  I have
also started using Ben Gay patches at night on the
worst areas (my
hips and lower back.)  There is a wealth of
information here, and
we're glad you found us.  Good luck Friday!

Judi in Indiana (58 yo wife, grandmother of 4)





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Dear Judy

Beautifully said. So true.

Best Wishes

Dee





--- nonny46 <nonny46@...> wrote:


---------------------------------
Dee,

I grew up in the "Dr. Kildare" (the Richard
Chamberlain version)
and "Marcus Welby" era, and never saw a doctor until I
was pregnant.
So my expectations were rather warped, thinking that
doctors were these
wonderful kind people who simply worked miracles.  I
have since learned
that they are human like the rest of us.  We have put
them up on
pedestals, and now we have to deal with it.  I've also
learned not to
blindly accept everything they tell me as truth.

Judi





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Thanks, Judi, I"ll mention that to my GP.

It's interesting that you mentioned that it happened
while gardening. I've had 2 "attacks" of severe chest
and back pain while doing relatively minor gardening
tasks and one 3 years ago when scrubbing a floor.
Other than the once the pain has only been in my
chest.

I keep forgetting to mention to the cardiologist, as I
head for my second stress exercise test , that it's
not my legs that are the problem or my ability to walk
long distances but it appears to have something to do
with my arms or lifting  and carrying relatively minor
weights.

I was congratulated on my perfect heart condition only
three or four years ago so obviously something has
gone wrong in the meantime. Which is why I was
wondering about the fibromyalgia/DD connection.

Best Wishes

Dee

--- nonny46 <nonny46@...> wrote:


---------------------------------

>
> Do you know if anyone else has had chest pains like
I
> mentioned? or problems with their hearts?

Dear Dee,

I have had chest pains off and on for the past year,
where it feels
like someone is trying to pull a knot through from
back to front and
back again.  Had a really bad one last week, but I
think then it felt
more like a muscle spasm as I had bent over to pull a
weed, then
couldn't straiighten up or take a deep breath.  It
went away as soon
as I lay down for a bit, but for a couple of days, the
area under my
left shoulder and left breast were very tender.  I'm
about 3 weeks
from seeing a new G.P. doctor, and will discuss it
with her as I've
never had any heart problems, but both my brothers
have heart
disease, as did my mother and grandmother.

Good luck,
Judi
>





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Hi

I can't at this point really recommend any doctor but
I can tell you the track I'm taking which may help.

I don't have multiple lipomas like your husband but I
could have what  is  suspected is Juxta-articular
adiposis dolorosa that is Type 1 DD, that maifests
with deposits of fatty tissue behind the knees. I've
had scans and an MRI that confirms the lipoma. (I hope
I'm describing this correctly!!!)

I have an appointment on 18th July in Western Sydney
with a Dermatologist who was recommended by a
Specialist in Canberra who was listed on a website as
someone who was knowledgeable of DD and who had
diagnosed a patient with fibromalgia, which as you
have probably read on recent emails has symptoms very
close to Dercum's Disease.

I did consult with a senior Dermologist in Eastern
Sydney who had been similarly recommended as knowing
about DD but as that proved not to be the case,  it
might be best to wait until after 18th July  before I
pass on the contact I have.

Because I've developed heart problems that is our most
urgent concern, but I do have an appointment with a
neurologist on 11th July to check out the pain in my
legs and face and other symptoms I've been
experiencing which appear to fit the fibromyalgia/DD
profile. I can certainly let you know if that is a
worthwhile avenue to pursue or not.

Best of luck

Dee





--- cydkeeble <cydkeeble@...> wrote:


---------------------------------
Hi, my husband has just had 26 lipomas surgically
removed from the
front of his body and has about 30 more to be removed
in august!!! the
surgeon only recently suggested he may have dercum's
disease, after
many general practitioners said the lipomas were
nothing to worry about
and couldnt offer a cause or any explanation on why he
gets so many.
they are painful and bother him. now we have a 'name'
of a possible
condition i want to find a doctor in sydney who
specialises in dercums
(if there is one) or who at least has heard of it to
see if he actually
has it! can anyone help?







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Hey Jackie!

Good to hear from you again, and I'm so glad you *almost* have a
diagnosis!  Sounds like you have found a doctor who has it all
together.  I was interested in what you said about the pain points of
FM, as I have often wondered if it was the FM pain point that hurt
when the doctor punched it, or if it was just the fat and/or lipomas
in those areas, or both.  It's kind of like the chicken/egg--which
came first, the FM or the DD?  Or did the DD cause the FM?  Aw heck,
who cares, they both hurt!!

Hm, I've got painful nodules around my knees too.  I mentioned it to
the orthoped. and he just sort of ho-hummed around it, never giving
me an answer.  My chiro thought they might be rheumatoid nodules.
I've read about those, and wonder if DD could cause a similar type of
nodule that isn't actually a soft lipoma?

Uh-oh, more thunderstorms coming (3rd one today)--better sign off or
risk a fried 'puter!

Gentle hugs,
Judi

Hi Bren, and welcome!

You are going the right route, I think, by going to a dermatologist
and having a biopsy of a lump.  I have had more than 30 removed, most
of which were angiolipomas.  So I would suggest giving the
doctor/surgeon a "heads up" that since they are painful, they might
well be angiolipomas, which tend to bleed quite a bit.   And to make
sure they remove the whole thing, not just part of it, as they do
grow back.  I haven't had them grow in the exact spot of removal, but
all around where one was removed.

Yes, they can get bigger and multiply.  I am guessing you have not
gotten anything to relieve your pain or fatigue, so that is
important.  Many of us have different combinations of
pain/sleep/antidepressant meds, and you may need to find out what is
best for you personally.  I take Ultram for pain, Voltaren
(diclofenac)for inflammation, and Remeron to help with sleep.  I have
also started using Ben Gay patches at night on the worst areas (my
hips and lower back.)  There is a wealth of information here, and
we're glad you found us.  Good luck Friday!

Judi in Indiana (58 yo wife, grandmother of 4)