Hi all,

Well I'm off on Thursday to see the Dermatologists for the South
West of England, so please send the positive 'vibes' that they'll be
receptive and know how to treat me!!  I want to be referred to a
pain clinic so I can try and manage this blessed pain (feisty, let
us all know how you get on, thoughts are with you!).  I am hoping at
least one of them will be well read on Dercum's.  Am taking relevant
information and my questions and hubby coming with me to support me
too.  I also want to know if it's plausible to have groups of my
lipomas removed etc as have so many of them.

I too am worrying about the lack of mobility.  I have definitely
gotten worse over the last 18 months, particularly the last 6 as am
finding walking any distance very painful.  My legs just throb like
hell and do so for several days afterwards and the meds that I'm on
don't 'touch' it.  We had a family outing the other weekend with
family we don't see often (my mother and father in law) and I
suppose I didn't want them knowing how bad I was feeling and really
pushed myself to walk around a zoo, but felt terrible during and
afterwards.  Consequently was out of action when we came home for
several days and had to rest because of the pain.  My arms are also
getting like my legs and are throbbing a lot, but fortunately, not
as much.  Hopefully if I can get the right pain meds, it'll help.  I
guess if the pain doesn't subside I'll have to look into getting
some form of mobility like an electric wheelchair for out and about.
The fatigue that comes with this DD is also a disability in itself
and I am spending far longer 'having a nap' durining the day.. I'm
normally out of it for at least 2 hours!


I suppose it's such a personal journey, losing our mobility that we
all act differently towards it.  I for one know I have been in
denial for several months about how little I can walk now, but sure
had a wake up call the other weekend!  I suppose also because I
don't want to feel a burden to my hubby as we have quite a lot to
cope with day to day with our children (both special needs)so that
has added to my denial I guess.

Sorry, I'm just rambling here, guess I'm a bit nervous about
Thursday and indeed what the future holds.

Bye for now
Take care and gentle hugs to all.

Skip x

Dear Feisty,

I will add "angels in your pocket" for tomorrow (which I think it's
nearly that now, owing to time differences.)

I have days when I don't feel like lifting a finger--today was one of
them.  Yesterday I couldn't sit down I had so much energy.  You just
have to learn when you can and when you can't do things.  Ron and I
had planned to do a lot of traveling when we retired, but now neither
of us can drive long distances, so we are saving some money to take a
nice trip by air some day.

As others have said, adequate pain control may and probably will help
you, especially when you can get some good sleep.  I still don't
sleep all night, but wake up once or twice, and usually go right back
to sleep.  I've even started dreaming again (and some real doozies
too!)

Don't give up...ever!  You may never become immobilized.  If I have
to go to a power chair, I will be one of those grannies in leather,
just not on a Harley!  Now if I can find leather pants that fit...
uh, don't go there.

Let us know how it goes, what eveyrone says and does, the whole
scoop.  I'll keep you in my prayers,

Judi
>

It was message #6448:

I recently learned that I have a rare and apparently incurable
> disease, Dercum's Disease, which produces many painful lipomas
> throughout my body.  There are other symptoms of the disease, but
the fatigue and weakness are almost as bad as the pain.
>
> I hit a real low this morning.  I sat on the couch in our living
> room, trying to get comfortable in spite of the pain from surgery I
> had two days ago to remove fourteen of the lipomas from my back and
> leg.  Other areas of pain reminded me of their presence, and I soon
> found myself falling into the Futility Pit.  That's the place where
> my courage sometimes falls when I feel that there is little or no
> hope.
>
> I looked outside, and wondered why, of all the times I have prayed
to see at least one little angel, I have never seen one, never felt
the presence of one when I needed it.  And then I saw the maple tree
> across the street.  The leaves, in different shades of red and
> bronze, were fluttering in the breeze.  Golden leaves from the
maple in our front yard were flying past the window like so many…
angels?
>
> I thought about autumn, and how I have often felt that sad at this
> time of year, thinking of winter's approach.  But today, seeing
these colorful figures floating and dancing in the breeze, I had a
> different feeling.  Just as spring signifies a new beginning, a
> rebirth, so autumn has its own beginning.  It is a time to rest up
> and prepare for that rebirth.  It is a time to enjoy the warmth of
> our homes, fluffy fleece clothes, good books, casseroles, and
> gathering family times.  It is a chance for the seeds of our
rebirth to grow.
>
> I looked at the maple in our front yard, the one that looked so
> pitiful last Spring, after it had been "topped" to remove all the
> dead wood and allow the 150-year old tree to continue growing.  It
is now a well-shaped tree, with many beautiful leaves, all of which
were fluttering at me as a reminder.  The reminder?  That even though
I have been "topped" or challenged with this disease, I have the
> opportunity to rest, draw the winter's warmth around me, and
prepare for the rebirth of my spirit and my body.  It will happen,
just as sure as I know that these trees will sprout new leaves next
Spring.

> I HAVE seen angels.

Dear Feisty,

Two summers ago, my husband and I went home to see our families for
the first time in a while. The trip takes about 15 hours if the
weather, road repair, and traffic volumes cooperate. It took us 5 days
to make the trip each way, with a day or two to simply rest and not
drive at all. It was our fisrt long trip in years.

Last summer, we made the trip in 2 days each way. We had sold our 2
little cars and replaced them with a mini-van. I am not sure if that
made the trip a little easier or not. Before the trip, I purchased
what we call a Rollator - a rolling walker with a seat to rest when I
get tired. It certainly helped with unloading the car at each stop, as
well as making my walking a tiny bit easier.

This year, I will have a power chair (which arrived after our trip
last year). I know that makes it easier for me to get around now. The
amount of energy I save it so significant. And with Remicade and
Methotrexate in my hip pocket, I know I have more energy. If you get
adequate pain control from the Clinic, you may be able to go see your
children again when you want to. I will keep you in my prayers, and
cross my fingers that you find a sympathetic and able doctor tomorrow.

Be well and take care. Use your spoons wisely.

Peace,
--
Dora

Just to say that even if I am in a power chair now I can still drive
a car, even work manual gear shift. BUT not for long distances
because of fatigue. And can't bring my chair with me. This is a
government money prob and may be different in England, I mean
getting a car that can bring the power chair along. I have no way of
paying for it myself.

And if you can't drive an ordinary car they can make you a special
designed one that you can drive with your eyebrows - well, maybe a
bit exaggerated, but much can be done, just comes down to money.

But remember, you are not at that stage now, and do as you were
told, take each day at a time, and enjoy whatever you can.

After all we might happen to get a brick in the head tomorrow and be
criped/dead for some other reason than DD. As the saying goes: Try
to live with it.....

Dorrit in snowy DK (not Dakota...)

I've just read your mail from Yorkshire and just wanna put a heart
under your belt(dutch expresion) so please know I'll be thinking
bout you, hope this offers u some strength to get you trough the
day; so my thoughts are with you... Sorry to say I don't have the
answer to your questions, with love, Diana

Hi everyone,

I am off to the hospital tomorrow for my very first appointment in
the Pain Clinic. I have a whole folder of information to take with
me, but I thought I would mention that one of the articles that Dora
posted on pain is so interesting.

It has made me realise just to what extent my whole life has changed
because of living with chronic pain without relief from it. It is
true that we all learn to live with it, but that we stop doing
certain things because we know that it will mount in   intensity
because of the activity.

I am having real problems accepting the limitations that this darned
DD is putting on me, more than ever this winter. I dread being
immobilised and not being able to drive a car. I think I could handle
some handicap as long as I can still get about somehow, but even my
arms are weak tonight. I certainly could not manage to push myself in
a wheelchair. I miss my kids who live in a different country and up
till now I just got in my car and went - there is no way I can do
that this year. I used to drive twelve straight hours across France
to get to the other ferry but I can't even drive down to the local
airport at the moment. Does it get any better?? Does this weakness
come and go or just get worse??

Any answers anyone ?

not so feisty - in damp cold Yorkshire - lol

Actualy that says it all to you who have replied on my previous
message, it's all more helpfull info than I could find! You'll be
seeing me more around, bye 4 now, greets, Diana

Hello Diana,

Welcome to our "elite" group!  You have already overcome the biggest
obstacle--being diagnosed.  Now, as Dora said, you can take time to
read and study, make notes, and ask your questions.  You might also
want to keep a diary, to record how you feel, and what causes the
worst problems.  We're here to support and encourage each other, so
feel free to ask and tell us how you feel,

Judi in Indiana--waiting for snow
>

Hi Diana,

Welcome to this wonderful group who have given me so much support in
a very short time.  I have to say, that although you are not lucky to
have joined us with this disease, at least you have been diagnosed
quite young, so you will be able to do what you need to do in good
time, so that the disease can be dealt with properly.

I have been struggling, like so many others, with Doctors for over 25
years, to make them understand that something was wrong.... and have
only recently been diagnosed. The lumps I have complained about for
so long are so really numerous.

You will find all sorts of advice here and elsewhere, but the general
consensus seems to be, that lumps should be removed asap.... to avoid
them growing, becoming more painful and infiltrating more muscles.  I
just wish I had known all those years ago. Other people seem happy to
live with them - it will be your choice.

Find a Doctor who will listen - and when you see the Doctors - go
armed with all you can print out - and lots of paitience! Doctors do
not like it when we are better informed than them!

Kind regards,

feisty

Dear Diana,

I am glad that you found this group, though we wish you did not share
this disease with us. You will find a lot of good information on this
web site on the Files and Links pages. You might also want to take your
time and look through the message archives. The subject lines will give
you some ideas of what messages to look through.

Ask whatever questions you want here. There are many smart folks who
have been dealing with this disease for varying lengths of time, and who
are willing to share their experiences with you. Since your head is
"overloaded on info," it might be best if you ask the questions rather
than if we all jump in with even more information for you.

Besides information here, I highly recommend visiting
www.dercumshope.org. There is a lot of good information there. We also
host web chats on Thursdays in the morning and afternoon, based on
California time. If you click on the time of the chats, you will be
taken to a time conversion web site so that you can figure out what time
chats are in Holland. You will need to register at the site, with a
screen name and password, in order to look over the Post-It Message
board, and to join the chats. If you need more information or assistance
with the site, you can write to me privately.

There is also the Lipoma Forum, at www.lipomaforum.com. This is a site
that handles the various forms of Lipomatosis, including Dercum's
Disease. Some of the members here are moderators and participants there
as well.

So, let your mind digest more of what you have learned, and then ask
away. We are always willing to help out our newly diagnosed sisters and
brothers. Be well and take care. Use your spoons wisely.*

Peace,
--
Dora Maillaro-Tomalonis
doramt@...
888-238-1929 (Voicemail/Fax)
586-945-4388 (cell)
-----------------------
The Spoon Theory
http://www.butyoudontlooksick.com/spoons.htm*
----------------------
"The difference between the right word and the almost right word
is the difference between lightning and the lightning bug."
--Mark Twain
----------------------
Lipomas Can Hurt!
http://www.nlm.nih.gov/medlineplus/ency/imagepages/1209.htm

haakdiana wrote:

>Hello to who reads this!I am Diana, 25 years old and from Holland.
>I've just been diagnosed as having Dercum, my doctor told me to find
>my own info and i've experienced that its very hard to find accurate
>info about this disease... Also I'm new in using internet as medium,
>so forgive me if Imake the beginnersmistakes! I feel overloaded on
>info and don't know where to focus on, what to believe and what not.
>I'd like to talk with someone with personal experience, who want's
>to help me out?!?
>

Hello to who reads this!I am Diana, 25 years old and from Holland.
I've just been diagnosed as having Dercum, my doctor told me to find
my own info and i've experienced that its very hard to find accurate
info about this disease... Also I'm new in using internet as medium,
so forgive me if Imake the beginnersmistakes! I feel overloaded on
info and don't know where to focus on, what to believe and what not.
I'd like to talk with someone with personal experience, who want's
to help me out?!?

Neither lipomas nor liposarcomas have any know relationship to obesity. [emphasis added]

Cyberfriends: The help you're looking for is probably here.

Welcome to Ed's Pathology Notes, placed here originally for the convenience of medical students at my school. You need to check the accuracy of any information, from any source, against other credible sources. I cannot diagnose or treat over the web, I cannot comment on the health care you have already received, and these notes cannot substitute for your own doctor's care. I am good at helping people find resources and answers. If you need me, send me an E-mail at scalpel_blade@... Your confidentiality is completely respected.

DoctorGeorge.com is a larger, full-time service. There is also a fee site at myphysicians.com, and another at www.afraidtoask.com.

Translate this page automatically

With one of four large boxes of "Pathguy" replies.

I'm still doing my best to answer everybody. Sometimes I get backlogged, sometimes my E-mail crashes, and sometimes my literature search software crashes. If you've not heard from me in a week, post me again. I send my most challenging questions to the medical student pathology interest group, minus the name, but with your E-mail where you can receive a reply.

Numbers in {curly braces} are from the magnificent Slice of Life videodisk. No medical student should be without access to this wonderful resource. Someday you may be able to access these pictures directly from this page.

I am presently adding clickable links to images in these notes. Let me know about good online sources in addition to these:

Pathology Education Instructional Resource -- U. of Alabama; includes a digital library
Houston Pathology -- loads of great pictures for student doctors
Internet College of Cytology
Pathopic -- Swiss site; great resource for the truly hard-core
Syracuse -- pathology cases
Walter Reed -- surgical cases
Alabama's Interactive Pathology Lab
"Companion to Big Robbins" -- very little here yet
Alberta Pathology Images --hard-core!
Alberta PC Tumor Images -- also non-tumors; in alphabetical order
Cornell Image Collection -- great site
Bristol Biomedical Image Archive
EMBBS Clinical Photo Library
Chilean Image Bank -- General Pathology -- en Español
Chilean Image Bank -- Systemic Pathology -- en Español
Connecticut Virtual Pathology Museum
Australian Interactive Pathology Museum
Semmelweis U., Budapest -- enormous pathology photo collection
Iowa Skin Pathology
Loyola Dermatology
History of Medicine -- National Library of Medicine
KU Pathology Home Page -- friends of mine
The Medical Algorithms Project -- not so much pathology, but worth a visit
National Museum of Health & Medicine -- Armed Forces Institute of Pathology
Tumorboard.com-- Huge collection of images
U of Iowa Dermatology Images
U Wash Cytogenetics Image Gallery
Urbana Atlas of Pathology -- great site
Visible Human Project at NLM
WebPath: Internet Pathology Laboratory -- great site

My team:

Ed Lulo's Pathology Gallery
Bryan Lee's Pathology Museum
Dino Laporte: Pathology Museum
Tom Demark: Pathology Museum
Dan Hammoudi's Site
Claude Roofian's Site

Also:

Medmark Pathology -- massive listing of pathology sites
Pathology Handout -- Korean student-generated site; I am pleased to permit their use of my cartoons
Estimating the Time of Death -- computer program right on a webpage
Pathology Field Guide -- recognizing anatomic lesions, no pictures

Freely have you received, freely give. -- Matthew 10:8. My site receives an enormous amount of traffic, and I'm handling about 200 requests for information weekly, all as a public service.

Pathology's modern founder, Rudolf Virchow M.D., left a legacy of realism and social conscience for the discipline. I am a mainstream Christian, a man of science, and a proponent of common sense and common kindness. I am an outspoken enemy of all the make-believe and bunk which interfere with peoples' health, reasonable freedom, and happiness. I talk and write straight, and without apology.

Throughout these notes, I am speaking only for myself, and not for any employer, organization, or associate.

Special thanks to my friend and colleague, Charles Wheeler M.D., pathologist and former Kansas City mayor. Thanks also to the real Patch Adams M.D., who wrote me encouragement when we were both beginning our unusual medical careers.

If you're a private individual who's enjoyed this site, and want to say, "Thank you, Ed!", then what I'd like best is a contribution to the Episcopalian home for abandoned, neglected, and abused kids in Nevada:

St. Jude's Ranch for Children
PO Box 60100
Boulder City, NV 89006--0100

My home page
More of my notes
My medical students

Especially if you're looking for information on a disease with a name that you know, here are a couple of great places for you to go right now and use Medline, which will allow you to find every relevant current scientific publication. You owe it to yourself to learn to use this invaluable internet resource. Not only will you find some information immediately, but you'll have references to journal articles which you can obtain by interlibrary loan, plus the names of the world's foremost experts and their institutions.

Clinical Queries -- PubMed from the National Institutes of Health. Take your questions here first.
National Institutes of Health ... push "Proceed"
HealthWorld
Yahoo! Medline lists other sites which may work well for you

Alternative (complementary) medicine has made real progress since my generally-unfavorable 1983 review linked below. If you are interested in complementary medicine, then I would urge you to visit my new Alternative Medicine page. If you are looking for something on complementary medicine, please go first to the American Association of Naturopathic Physicians. And for your enjoyment... here are some of my old pathology exams for medical school undergraduates.

I cannot examine every claim which my correspondents share with me. Sometimes the independent thinkers prove to be correct, and paradigms shift as a result. You also know that extraordinary claims require extraordinary evidence. When a discovery proves to square with the observable world, scientists make reputations by confirming it, and corporations are soon making profits from it. When a decades-old claim by a "persecuted genius" finds no acceptance from mainstream science, it probably failed some basic experimental tests designed to eliminate self-deception. If you ask me about something like this, I will simply invite you to do some tests yourself, perhaps as a high-school science project. Who knows? Perhaps it'll be you who makes the next great discovery!

Our world is full of people who have found peace, fulfillment, and friendship by suspending their own reasoning and simply accepting a single authority which seems wise and good. I've learned that they leave the movements when, and only when, they discover they have been maliciously deceived. In the meantime, nothing that I can say or do will convince such people that I am a decent human being. I no longer answer my crank mail.

This site is my hobby, and I presently have no sponsor.

This page was last updated 01/17/05.

During the ten years my site has been online, it's proved to be one of the most popular of all internet sites for undergraduate physician and allied-health education. It is so well-known that I'm not worried about borrowers. I never refuse requests from colleagues for permission to adapt or duplicate it for their own courses... and many do. So, fellow-teachers, help yourselves. Don't sell it for a profit, don't use it for a bad purpose, and at some time in your course, mention me as author. Drop me a note about your successes. And special thanks to everyone who's helped and encouraged me, and especially the people at KCUMB for making it possible, and my teaching assistants over the years.

Whatever you're looking for on the web, I hope you find it, here or elsewhere. Health and friendship!

-- Dora Maillaro-Tomalonis
doramt@...
888-238-1929 (Voicemail/Fax)
586-945-4388 (cell)
-----------------------
The Spoon Theory
http://www.butyoudontlooksick.com/spoons.htm
----------------------
"The difference between the right word and the almost right word
is the difference between lightning and the lightning bug."
--Mark Twain
----------------------
Lipomas Can Hurt!
http://www.nlm.nih.gov/medlineplus/ency/imagepages/1209.htm

Hi John,
Well sounds like your symtoms are very similar to mine.
I am a 50 year old male that has had these lumps since mid teens
about 8 years ago i had around 80 lipomas removed from my arms and
chest mainly for cosmetic reasons. They never posed a problem in the
past but now getting older they appear to be causing me problems.
It does not appear to be DD as i don't suffer from the extreme
pain.But they are starting to cause symptoms very similar to
depression. No one here is a doctor, but have you looked into
Multiple Familial Lipomatosis.  It starts at a younger age and
afflicts men.  The tumors tend to show up more, tend to be well
circumcised and tend to be painless.
I have been arming myself with info to take to my doctor as i live in
Rural Australia and need all the info i can get to help them. This
web site has a lot of info and may help you.
http://www.internet-health-
directory.com/Conditions_and_Diseases_Skin_Disord
ers_Dercum_Disease.html
Keep in touch
Regards
Ron



--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...>
wrote:
>
> Hello John,
>
> Can't help you with local doctors as I live in Indiana, but I am
> going to see the head of dermatology at Indiana U. Hospital in 2
> weeks and I hope to have some good luck there, as it was he and the
> other 70 doctors in attendance at a derm. conference who diagnosed
me.
>
> Your symptoms sure sound familiar to me--any poking or prodding has
> the same effect on me.  If I'm on my feet a lot, or being normally
> active as a person is who likes to garden and keep house, when I do
> lie down at night I often get very painful spasms.
>
> I hadn't thought about it, but there is often some itching or a
> burning sensation before a lump appears.  I haven't had any rashes,
> but a large overpopulation of cherry angiomas (red moles)
coinciding
> with the growth of lipomas.  The more lumps, the more moles in the
> same areas.  I do have some lumps that are not painful in
themselves,
> but the area near them can ache.  Most of my lipomas have been
> angiolipomas, but a few were "just" lipomas.
>
> So you see, it is not "all in your head"--unfortunately it just
isn't
> in your doctors' heads...yet.  We are all in the process of
educating
> our branches of the medical profession, so welcome to the battle!
>
> Judi in Indiana

Hi Teddy,

Rotten computer?  Hmm, I thought I smelled something...

I'm glad you got a good long time before the aliens started attacking
again, but sure wish it had been a permanent fix for you.  I don't
understand the significance of the angiomas--which I have hundreds if
not thousands of, and which the surgeon burned off the largest ones
at my last surgery.  I mentioned it during the derm. conference, but
all I got were "hmm's" from everyone.  My late doctor said "oh
everyone has those" but not just in coincidence with the lumps!  Yes,
I always had a few, and maybe I started with this disease years
before I became aware of it.

My upper thighs have always been tender.  The first very large lipoma
came out 4 years ago, 2 years before I knew of the disease--it had
been growing for about 5 years and became painful the 2 years before
surgery.

I wouldn't wish my ex-SIL on Mars--perhaps being conscripted and sent
to Afghanistan would be better?  Let him work his meanness out in the
desert.  I wish our phone company DID have a system like yours!

Don't overwork yourself.  Wish you could join us at Mousie's (little
tiny tavern in town here) for dinner.  I'm really eager for
dinnertime to come--I ran out of Diclofenac and can't take one until
5 PM (with meal.)

Gentle hugs,
Judi

Judi,

How I agree - I am trying to find a way of even counting the damn
things so that I can tell the Pain Clinic on Tuesday morning.  I
can't even count them because they are all so close to each other and
the deeper ones are just huge lumps which are really painful to prod!

feisty

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...>
wrote:
>
> I purchased the Liv Kit at my local pharmacy here, and paid $40 for
> it--way too much I think, since there are other similar devices
> available for half that.  I can feel the individual lumps under the
> skin, down about an inch, but the ones that are deeper aren't felt
> except at a generalized swelling.  The massage therapist really dug
> in near my hips and shoulders, which DID nearly cause me to go
> through the ceiling, but she could feel fairly large, well-defined
> masses which as I said do not show up on xrays.  I'm not sure they
> would show up clearly on ultrasound, except as they displace other
> tissue.
>
> For the sake of those who are newer to this group, I had a PET scan
2
> years ago after something showed up on a chest xray in my lung, and
> it did not show a single lipoma.  It was explained to me that the
> lipomas probably would not show up, as the PET scan deposits a dye
> that is only absorbed by cancerous growths.  I only tell you this
to
> save you the unnecessary expense of having one of these scans.  I
> wish someone would devise a diagnostic that would highlight every
one
> of the rotten buggers!
>
> Blessings,
> Judi

Hello John,

Can't help you with local doctors as I live in Indiana, but I am
going to see the head of dermatology at Indiana U. Hospital in 2
weeks and I hope to have some good luck there, as it was he and the
other 70 doctors in attendance at a derm. conference who diagnosed me.

Your symptoms sure sound familiar to me--any poking or prodding has
the same effect on me.  If I'm on my feet a lot, or being normally
active as a person is who likes to garden and keep house, when I do
lie down at night I often get very painful spasms.

I hadn't thought about it, but there is often some itching or a
burning sensation before a lump appears.  I haven't had any rashes,
but a large overpopulation of cherry angiomas (red moles) coinciding
with the growth of lipomas.  The more lumps, the more moles in the
same areas.  I do have some lumps that are not painful in themselves,
but the area near them can ache.  Most of my lipomas have been
angiolipomas, but a few were "just" lipomas.

So you see, it is not "all in your head"--unfortunately it just isn't
in your doctors' heads...yet.  We are all in the process of educating
our branches of the medical profession, so welcome to the battle!

Judi in Indiana

I purchased the Liv Kit at my local pharmacy here, and paid $40 for
it--way too much I think, since there are other similar devices
available for half that.  I can feel the individual lumps under the
skin, down about an inch, but the ones that are deeper aren't felt
except at a generalized swelling.  The massage therapist really dug
in near my hips and shoulders, which DID nearly cause me to go
through the ceiling, but she could feel fairly large, well-defined
masses which as I said do not show up on xrays.  I'm not sure they
would show up clearly on ultrasound, except as they displace other
tissue.

For the sake of those who are newer to this group, I had a PET scan 2
years ago after something showed up on a chest xray in my lung, and
it did not show a single lipoma.  It was explained to me that the
lipomas probably would not show up, as the PET scan deposits a dye
that is only absorbed by cancerous growths.  I only tell you this to
save you the unnecessary expense of having one of these scans.  I
wish someone would devise a diagnostic that would highlight every one
of the rotten buggers!

Blessings,
Judi

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

From: Jackie Hanan

To: Dercums_Disease@yahoogroups.com

Sent: Saturday, February 26, 2005 6:07 PM

Subject: RE: [Dercums_Disease] Massage--my two cents

Hi,…….ya know I was thinking, and you all know how much I’ve been thinking lately, lol….but,…….going for a massage might be good as a diagnostic tool. They know how the muscles and tissues are suppose to feel, and they can get down to the deeper layers where there might be lumps we can’t feel. I feel like I am full of lumps, but when I ask my hubby to feel where I think I have one, he says he can’t feel it. I KNOW there has to be something there because it hurts so dang much. So if a Massage therapist can verify that there are numerous lumps, and they ARE painful, maybe the Dr.’s would be more inclined to dig deeper? So maybe a MT would be the first place to go? What do you all think? I know it will be painful, but something written up to prove we aren’t making it up might help the Dr.’s to take us serious.

Smiles, Jackie

 

p/s WELCOME Ursula and John, and all the Newbie’s! I haven’t been dx’ed yet, but I am no stranger to having painful lumps. Never knew what they were until I did a search on painful subcutaneous lumps, and came across DD.

 

The only benefit was that she found how deep many of the lumps are, especially the ones around my hips and in my back. Judi

Hi again Judi,

I didnt know she was studying to become a Minister, well done to her!
I went back to University at 42 and got my Degree in Educational
Psychology and Languages (with Religious Education included) then a
Teaching Degree too..... To prove a point - if only to myself! Your
self-esteem takes a battering when living with men like that!

Today, I am happily remarried to a lovely man - who is so easy to
live with - I wonder how I managed before ?

Best regards,

feisty

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...>
wrote:
>
> --- In Dercums_Disease@yahoogroups.com, "feisty_in_yorks"
> <c_prentice2003@y...> wrote:
> >
> Dear Feisty,
>
> Oh no, not your son too!  It might be a good idea to have him
contact
> Dr. Tomlinson to send some blood & tissue there as well as you.
>
> I know this experience my daughter is having will strengthen her--
> after all, she is studying to become a minister--I just wish she
> didn't have to go through it.  After all, she kicked the guy out,
he
> doesn't really want to be a father, and now he's being such a
jerk!
>
> Well, at least our snow has stopped, and no more until Monday.
>
> Judi (relaxing after a busy day.)
> >
> >

Hi John,

So sorry to hear how you feel, pretty much mirrors my own life, except my
lipomas hurt like hell to touch as well as getting generalised pain.  I
suffered from cocxydenia (?spelling) inflammation of the tailbone, for
several years and I have read in one of the many articles that this can also
be a symptom of DD.  One of the most frustrating things which I believe
leads to depresession, is the fact that not a lot of people within the
medical profession have heard of Dercum's.  My GP diagnosed me last year
only after new lipomas appearing on my arms and he took a biopsy from one of
the many lipomas in my leg.  He did the research and took me  more
seriously.  I am seeing a  group of Dermatologists next week to hopefully
find someone who has treated Dercum's and find a way to treat me.

I totally understand about the hands, and beleive a lot of members here
experience similar problems.  My main problem with them is pins and needles,
waking up with numb little fingers and fumbling around for coins in my purse
when I need to pay for something!

I also suffered a 'strange rash' last year but no one could identify it (not
even the dermatologist) and even went to the breast clinic as it was on one
of my breasts, just to screen for breast cancer.  (All was OK)   It went
away on it's own after several months.  I put it down to the fact that if
I'm 'inflamed' every where else it makes sense for my skin to 'flare up' now
and then.  Couldn't put it down to anything else.

The tiredness and exhaustion are deliblitating in themselves and extremely
frustrating.  I have learnt that I need to manage my days very carefully and
if I've got a busy weekend coming up, then I need to rest as much as
possible in the days before and after.

My main concern now is that I cannot walk as far as I used to without
getting a deep pain in my legs which I find very very frustrating, and
mayperhaps have to look into a wheelchair or something for the future..am
still in a bit of denial about this, but trying to come round to the idea
that I'm certainly not getting any better  and perhaps an electric
wheelchair will give me more mobility.

I hope some other members who live in the US might be able to help with your
request for info for a DD Doctor.

Anyway John, just to let you know that you are certainly not on your own
with this wretched DD and sending you some positive vibes for starting up
your business.  Just make sure you can fit in a nap time now and then!

Take care
Gentle hugs

Skip (aka Sharon)


----- Original Message -----
From: "upny51" <jrsun@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Saturday, February 26, 2005 3:36 AM
Subject: [Dercums_Disease] my symptoms


>
>
> Hi all,  I wrote recently about my discovery of this group, my
> frustration with doctors, etc.  Some of you asked questions (and I
> still have many) so a little more info:
>
> I live in Binghamton, NY which is a small city in "upstate" - approx
> center of state but in southern "tier" near the PA border.  Anybody
> else here or anywhere near?  Know any "enlightened" doctors nearby?
>
> My symptoms are varied.  As I wrote previously, I have about a dozen
> lipomas on each of my arms.  I have a few on my abdomen and back.  I
> had 2 on my left arm for years which had caused me little trouble -
> except that if exercise caused sore muscles/tendons, etc the lumps
> also became quite tender and would be noticable but not severe pain.
> Within the past year or so I started noticing a rather rapid increase
> in the number of lipomas.  They usually make their presence known
> because of itching - then of course when I scratch I notice the small
> lump.  The itching of new ones seem to last only a few days but then
> in days or weeks I will notice they have become large enough to be
> visible.  The lumps themselves are not usually that painful unless
> they are bumped, squeezed or rubbed.   If I do anything strenuous
> then I notice pain - but rather than painful lumps themselves, it is
> more like tendonitis or skeletal or muscular pain and aching in my
> arms. (Following one visit to a dermatologist during which several of
> the lipomas on one arm were pinched and poked and rubbed I had such
> extreme tendon pain in the arm during my drive home that I had to
> pull out of traffic and stop for about 30 minutes until it
> subsided.)  Sometimes it is noticable with movement - other times I
> simply experience shooting pain in my arms, hands without any
> movement and for no apparent reason.  Is there anyone else for whom
> the lipomas themselves are not painful - yet you experience lots of
> seemingly unrelated pain in the general area?  I often feel burning
> or tingling in the bottoms of my feet, and have tailbone pain.  I
> have trouble sitting/standing in one position for very long as I
> experience tensing of muscles/tendons.  I have experienced what I
> describe as "my hand are not working correctly" usually when I am
> doing things like handling cash, turning pages, buttoning a shirt.
> Lately I have had a rash which was first diagnosed by my GP as
> shingles but did not respond to medication.  Dermatologist said it
> could be caused by any number of things and it did respond to a
> cortisone cream he precribed.  I seem to have limited amount of
> energy and if I do anything excessive it seems to take a day or 2 for
> me to bounce back.  Having become a "displaced worker" a year ago
> (after 25 yrs), I have been trying to start my own business as well
> as working part-time jobs to make ends meet. I get exhausted easily
> and I seem to have a very limited amount of energy.  Even
> with "lists" and "plans" I find myself feeling what I would describe
> as "scatter brained" and unable to focus or concentrate to complete
> things and often feel the impulse to simply lay down and easily fall
> asleep.  I am becoming concerned that I may not be able to do
> everything necessary to make my plans for my new endeavor work.  This
> is so discouraging as I have had so much enthusiasm for this
> opportunity to "re-create" myself.  Worse - I am concerned that
> without a diagnosis, what happens if I simply can't work to support
> myself?  I often feel depressed but find myself wondering if the
> depression is "because" of all of this - or a just a "part" of all of
> this.  I have had numerous tests which have ruled out all sorts of
> things including heart condition, thyroid condition, HIV, arthritis,
> diabetes, etc.  Until I found this group, the dismissal by my doctors
> had started to make me think that all if this WAS my imagination or
> something psychological.  What do you all think -is this DD or
> something else?
>
> So you see - this is why my relief at finding the group.  I am
> printing as many articles/stories that reflect my symptoms and
> experiences as I can to "arm" myself for my next doctor visit.
>
> Thanks for your encouraging words in response to my first message.
> Your comments are welcome.  Best wishes to all of you.
>
> John
>
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>
>

Binghamton!  John, we're practically neighbors!

I'm near Williamsport, PA. My dermatologist is Dr Vincent Herbst, here
in Williamsport - he's been fantastic.  I was his first case of DD but
he's been with me the whole way.

But I was diagnosed by Dr O Fred Miller at Geisinger Medical Center
after MONTHS of waiting.  (Geisinger is a pain to deal with, but Dr
Miller is very good.  I haven't been back since I was diagnosed
because it is such an overwhelmingly disorganized and poor run place!)

Dr Herbst's info is in the database of doctors here.  For a while he
wasn't taking new patients but he is now.

I have had symptoms very similar to what you describe.  I do have
tumors that are painful in themselves, but the rest sounds very similar.

I hope this helps!

me<><  (aka Calvie)



--- In Dercums_Disease@yahoogroups.com, "upny51" <jrsun@a...> wrote:
>
> Hi all,  I wrote recently about my discovery of this group, my
> frustration with doctors, etc.  Some of you asked questions (and I
> still have many) so a little more info:
>
> I live in Binghamton, NY which is a small city in "upstate" - approx
> center of state but in southern "tier" near the PA border.  Anybody
> else here or anywhere near?  Know any "enlightened" doctors nearby?
>
> My symptoms are varied.  As I wrote previously, I have about a dozen
> lipomas on each of my arms.  I have a few on my abdomen and back.  I
> had 2 on my left arm for years which had caused me little trouble -
> except that if exercise caused sore muscles/tendons, etc the lumps
> also became quite tender and would be noticable but not severe pain.
> Within the past year or so I started noticing a rather rapid increase
> in the number of lipomas.  They usually make their presence known
> because of itching - then of course when I scratch I notice the small
> lump.  The itching of new ones seem to last only a few days but then
> in days or weeks I will notice they have become large enough to be
> visible.  The lumps themselves are not usually that painful unless
> they are bumped, squeezed or rubbed.   If I do anything strenuous
> then I notice pain - but rather than painful lumps themselves, it is
> more like tendonitis or skeletal or muscular pain and aching in my
> arms. (Following one visit to a dermatologist during which several of
> the lipomas on one arm were pinched and poked and rubbed I had such
> extreme tendon pain in the arm during my drive home that I had to
> pull out of traffic and stop for about 30 minutes until it
> subsided.)  Sometimes it is noticable with movement - other times I
> simply experience shooting pain in my arms, hands without any
> movement and for no apparent reason.  Is there anyone else for whom
> the lipomas themselves are not painful - yet you experience lots of
> seemingly unrelated pain in the general area?  I often feel burning
> or tingling in the bottoms of my feet, and have tailbone pain.  I
> have trouble sitting/standing in one position for very long as I
> experience tensing of muscles/tendons.  I have experienced what I
> describe as "my hand are not working correctly" usually when I am
> doing things like handling cash, turning pages, buttoning a shirt.
> Lately I have had a rash which was first diagnosed by my GP as
> shingles but did not respond to medication.  Dermatologist said it
> could be caused by any number of things and it did respond to a
> cortisone cream he precribed.  I seem to have limited amount of
> energy and if I do anything excessive it seems to take a day or 2 for
> me to bounce back.  Having become a "displaced worker" a year ago
> (after 25 yrs), I have been trying to start my own business as well
> as working part-time jobs to make ends meet. I get exhausted easily
> and I seem to have a very limited amount of energy.  Even
> with "lists" and "plans" I find myself feeling what I would describe
> as "scatter brained" and unable to focus or concentrate to complete
> things and often feel the impulse to simply lay down and easily fall
> asleep.  I am becoming concerned that I may not be able to do
> everything necessary to make my plans for my new endeavor work.  This
> is so discouraging as I have had so much enthusiasm for this
> opportunity to "re-create" myself.  Worse - I am concerned that
> without a diagnosis, what happens if I simply can't work to support
> myself?  I often feel depressed but find myself wondering if the
> depression is "because" of all of this - or a just a "part" of all of
> this.  I have had numerous tests which have ruled out all sorts of
> things including heart condition, thyroid condition, HIV, arthritis,
> diabetes, etc.  Until I found this group, the dismissal by my doctors
> had started to make me think that all if this WAS my imagination or
> something psychological.  What do you all think -is this DD or
> something else?
>
> So you see - this is why my relief at finding the group.  I am
> printing as many articles/stories that reflect my symptoms and
> experiences as I can to "arm" myself for my next doctor visit.
>
> Thanks for your encouraging words in response to my first message.
> Your comments are welcome.  Best wishes to all of you.
>
> John

Hi all,  I wrote recently about my discovery of this group, my
frustration with doctors, etc.  Some of you asked questions (and I
still have many) so a little more info:

I live in Binghamton, NY which is a small city in "upstate" - approx
center of state but in southern "tier" near the PA border.  Anybody
else here or anywhere near?  Know any "enlightened" doctors nearby?

My symptoms are varied.  As I wrote previously, I have about a dozen
lipomas on each of my arms.  I have a few on my abdomen and back.  I
had 2 on my left arm for years which had caused me little trouble -
except that if exercise caused sore muscles/tendons, etc the lumps
also became quite tender and would be noticable but not severe pain.
Within the past year or so I started noticing a rather rapid increase
in the number of lipomas.  They usually make their presence known
because of itching - then of course when I scratch I notice the small
lump.  The itching of new ones seem to last only a few days but then
in days or weeks I will notice they have become large enough to be
visible.  The lumps themselves are not usually that painful unless
they are bumped, squeezed or rubbed.   If I do anything strenuous
then I notice pain - but rather than painful lumps themselves, it is
more like tendonitis or skeletal or muscular pain and aching in my
arms. (Following one visit to a dermatologist during which several of
the lipomas on one arm were pinched and poked and rubbed I had such
extreme tendon pain in the arm during my drive home that I had to
pull out of traffic and stop for about 30 minutes until it
subsided.)  Sometimes it is noticable with movement - other times I
simply experience shooting pain in my arms, hands without any
movement and for no apparent reason.  Is there anyone else for whom
the lipomas themselves are not painful - yet you experience lots of
seemingly unrelated pain in the general area?  I often feel burning
or tingling in the bottoms of my feet, and have tailbone pain.  I
have trouble sitting/standing in one position for very long as I
experience tensing of muscles/tendons.  I have experienced what I
describe as "my hand are not working correctly" usually when I am
doing things like handling cash, turning pages, buttoning a shirt.
Lately I have had a rash which was first diagnosed by my GP as
shingles but did not respond to medication.  Dermatologist said it
could be caused by any number of things and it did respond to a
cortisone cream he precribed.  I seem to have limited amount of
energy and if I do anything excessive it seems to take a day or 2 for
me to bounce back.  Having become a "displaced worker" a year ago
(after 25 yrs), I have been trying to start my own business as well
as working part-time jobs to make ends meet. I get exhausted easily
and I seem to have a very limited amount of energy.  Even
with "lists" and "plans" I find myself feeling what I would describe
as "scatter brained" and unable to focus or concentrate to complete
things and often feel the impulse to simply lay down and easily fall
asleep.  I am becoming concerned that I may not be able to do
everything necessary to make my plans for my new endeavor work.  This
is so discouraging as I have had so much enthusiasm for this
opportunity to "re-create" myself.  Worse - I am concerned that
without a diagnosis, what happens if I simply can't work to support
myself?  I often feel depressed but find myself wondering if the
depression is "because" of all of this - or a just a "part" of all of
this.  I have had numerous tests which have ruled out all sorts of
things including heart condition, thyroid condition, HIV, arthritis,
diabetes, etc.  Until I found this group, the dismissal by my doctors
had started to make me think that all if this WAS my imagination or
something psychological.  What do you all think -is this DD or
something else?

So you see - this is why my relief at finding the group.  I am
printing as many articles/stories that reflect my symptoms and
experiences as I can to "arm" myself for my next doctor visit.

Thanks for your encouraging words in response to my first message.
Your comments are welcome.  Best wishes to all of you.

John

--- In Dercums_Disease@yahoogroups.com, "feisty_in_yorks"
<c_prentice2003@y...> wrote:
>
Dear Feisty,

Oh no, not your son too!  It might be a good idea to have him contact
Dr. Tomlinson to send some blood & tissue there as well as you.

I know this experience my daughter is having will strengthen her--
after all, she is studying to become a minister--I just wish she
didn't have to go through it.  After all, she kicked the guy out, he
doesn't really want to be a father, and now he's being such a jerk!

Well, at least our snow has stopped, and no more until Monday.

Judi (relaxing after a busy day.)
>
>

Hi Judi,

Sorry to here about your problems.....

I have been there and done that for several years - but if it is any
reassurance, I came out the other end a much stronger woman.

I sometimes wonder if it did not contribute to my aliens ?? But, bad
news tonight chatting on the phone to my 30 year old son about DD, he
just suddenly said "Hey Mum, do you think my lumps are the same thing
then ?"  He had never mentioned he had anY!! It seems he has four - I
said to make an appointment at the Doctors straight away to get them
out!

I would so like that no-one else has to suffer for nothing...........

Off to bed, tired out after school today - Kids were climbing up the
wall from the snow fever !!

Gentle hugs to you all,

feisty

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...>
wrote:
>
> Hi group,
>
> Wouldn't it be nice if we could avoid stress??  Our daughter's ex-
> husband has been making some extremely scary threats lately, and
she
> finally went to the police yesterday and reported it.  They assured
> her that they would protect HER and the children if he came
around.
> She is getting a tape recorder today to record any phone calls she
> gets from him.  We spent the evening at their house last night
while
> Cathy went to choir practice, and we felt somewhat uneasy,
especially
> since they live out in the country on a gravel road with only one
> other house, about 15 minutes away from the town center.  I didn't
> worry too much about her driving, as she is using a rental car at
the
> moment, and her fellow choir members escorted her to her car after
> practice.
>
> I don't wish the man any harm, just wish he would be abducted by
> aliens from another galaxy.
>
> Ron and I are off to do some shopping today, and I have been told I
> WILL use a wheel chair in the mall--no argument from me!  They have
> some nice power chairs there.
>
> Peace to all,
> Judi