Dercums_Disease : Messages : 26934-26963 of 29309

Global Health Network

http://www.GlobalHealthNetwork.org

Group Guidelines and Rules of Netiquette

The Group owners/moderators will enforce these guidelines!

The Global Health Network support group community gives persons affected by various diseases or disorders, family members, friends and medical professionals a place to meet, interact, and share ideas with each other. Just like a real community, you may have different opinions than other group users. Our Group experience is best when people remember a few rules. Herein, we have set out guidelines and Rules of Netiquett for participation in our group. Here are some of the key things to remember:

You may not harass, abuse, threaten, or advocate violence against other members or individuals or groups.
You may not post content that is harmful to minors.
You may not post content that is obscene, otherwise objectionable, or in violation of federal or state law.
You may not add members to a group without their permission.
You may not use the group for commercial or advertising purposes.
You may not post content which infringes the intellectual property, privacy or other rights of third parties.
Some content may be more appropriate in some contexts than others. We reserve the right to remove content that it determines deemed to be inappropriate and in violation of our rules.
You may not use the group solely for the purpose of storing and archiving files.

If you are unsure whether your content is consistent with these policies, please err on the side of caution and do not post it!

NOTE: In the beginning, posts will be moderated to ensure adherence to the group Guidelines and Rules of Netiquette.

Our Right to Terminate Group Membership.

The group owner(s) and or moderator(s), in their sole discretion, may terminate or remove any content or your membership immediately and without notice if (a) it is believed that you have acted inconsistently with the spirit or the letter of the group, the group�s guidelines, or (b) believed you have violated or tried to violate the rights of others. Please help us keep our group an enjoyable and positive experience. If you see a post that violates our rules, please let us know by contacting David Hughes at dhhughes@....

Read on for Group Rules of Netiquett!

Rules of Netiquette

Joining a List/Discussion Group

When you join a list, save your introductory welcome message! Welcome messages generally contain important information about the group -- the rules and guidelines, instructions on how to post to the group, how to subscribe, how to unsubscribe, etc. Follow any and all guidelines that the list owner has posted. The list owner establishes the local "netiquette" standards for her/his list and retains the right to deny access to the group for those violating the rules.
When you join a list, monitor the messages for a few days (or read through the list archives, if available) to get a feel for what common questions are asked, and what topics are deemed off-limits. This is commonly referred to as lurking. When you feel comfortable with the group, then start posting.
See if there is a FAQ (Frequently Asked Questions) � for a group that you are interested in joining. Veteran members get annoyed when they see the same questions every few weeks, or at the start of each semester. Our group does have a FAQ page available in the database.
Use your own personal Email account; don't subscribe using a shared office account. There are many free email websites out there -- Yahoo!, Hotmail, etc. - you may find it useful to use one of these type of accounts for all of your list mail. Also turn off any Auto-Responders - they create extra mail for people posting to the list and can cause people to stop posting.

Posting - General Tips

Keep your questions and comments relevant to the focus of the discussion group.
Do not post in ALL CAPS. Capitalize words only to highlight an important point or to distinguish a title or heading. *Asterisks* surrounding a word also can be used to make a stronger point. Capitalizing whole words that are not titles is generally termed as SHOUTING!
Do not send "Me Too!", "Thank You", etc. messages to the group! Send those directly to the original poster. A private "Thank You" is nicer too!
Do not send attached files. If you have a file that you want to share, advertise that you have them available and those who are interested can request them via private e-mail off list.
Do not send SPAM. SPAM includes virus warnings, get-rich-quick schemes, secret cookie recipes, political propaganda, and chain letters (i.e. Pass this letter on to 10 people to have �Good Luck�). Most of these are hoaxes and are not welcome on mailing lists. They only serve to irritate people. Definition of Spam: It is unsolicited. It is part of a �mass mailing or the sender is a stranger to the recipient. (The recipient has never had a willful personal contact with the sender.)
Try to read through the day's messages before responding so that twenty people don't end up answering the same question. Keep the messages that you think you'd like to respond to and delete the others. Then go back through and begin your replies. If you can, put your replies all in one post (known as combining posts).
Do not send or forward personal email to a list or another person without permission. This is a copyright violation and a serious breach of privacy and you may be removed from a list for doing so.
When going away for more than a week, unsubscribe or suspend mail from any mailing lists or LISTSERV services. Directions for how to do that should have been included in the introductory welcome message that was sent to you went you subscribed.
When replying to a message posted to a discussion group, check the address carefully to be certain it's going to the intended location (person or group). It can be very embarrassing if you reply incorrectly and post a personal message to the entire discussion group that was intended for an individual.
Use discretion when forwarding a long mail message. It's preferable to reference the source of a document and provide instructions on how to obtain a copy. If you must post a long message, warn the readers with a statement at the top of the mail message. Example: WARNING: LONG MESSAGE
Resist the temptation to "flame" others on the list. Flaming is the act of responding in a highly critical, sarcastic, or ridiculing manner - especially if done on a personal level. Remember that these discussions are "public" and meant for constructive exchanges. Treat the others on the list as you would want them to treat you.
Do no send "unsubscribe" requests to the list. Other people on the list are not interested in your desire to be added or deleted. Any requests regarding administrative tasks such as being added or removed from a list should be made to the appropriate area, not the list itself. Refer to your introductory welcome message for instructions on how to unsubscribe or change your subscription settings. You were able to subscribe on your own, you should be able to unsubscribe on your own as well.
Don't feel obligated to send a personal introduction or biography to the list when you first join unless the list guidelines specifically request that you do so. However, if someone does post a message of this type, it's OK if current members wish to welcome these people into the group and make them feel at home. Doing this on low volume lists helps to stimulate conversation. On high volume lists though, it is suggested that these people be welcomed using their private email address rather than have several welcome messages cluttering up group related discussions.

Posting - Subject Lines

Be sure the subject line reflects the topic. In other words, don't auto-reply and start a new thread leaving the old subject line in the header. This of course, providing that your software will allow you to change the subject. (I don't know of any email program that *doesn't* allow it.)
Put your entire comment in the body of the message. Don't begin your message with a few words in the Subject line and continue in the body of the message. That leads to discontinuity of the message and defeats the purpose of the Subject Line.
If you receive your list mail in Digest form, change the subject line to appropriately reflect the topic of your post. A subject of "Re: Digest xxx" helps no one.

Posting - Quoting

When quoting another person, edit out whatever isn't directly applicable to your reply. Don't let your mailing software automatically quote the entire body of messages you are replying to when it isn't necessary. Take the time to edit any quotations down to the minimum necessary to provide context for your reply. Nobody likes reading a long message in quotes for the third or fourth time, only to be followed by a one line response: "Yeah, me too."

What does quoted text look like? Email programs can display quoted text in a variety of ways, but the most common is for each line of text to be preceded by the "greater than" symbol (>).

> This is quoted text

Some email programs will simply add the line "--- Original Message ---" (or something similar) to the top of the previous message with the expectation that you will type your reply above that. While this style of quoting is okay in a business situation -- that is, when you are having a discussion with a co-worker and would like to keep the entire message thread within each email -- it is definitely NOT okay when using discussion lists, as it only serves to make the mail difficult to read. If you are using an email program that quotes in this fashion, you will need to manually create your quoted text. The simplest way to do this is to edit out the text you don't want and add two slashes ("//") to the beginning and ending of the text you'd like to quote.

//This is also quoted text//

The number one rule of quoting is quote judiciously. Quote only what is essential to make it possible for the reader to understand what your posting or email message is about. As a rule avoid quoting an entire message (signatures and all). It is not judicious to quote, say, a hundred lines of discussion just to input a single line of one's own. Proper quoting is a skill. Please devote some time to working the quote appropriately. Don't be lazy in this respect.

Leave a blank line between the quoted text and your reply or else your text and the quoted text will difficult to distinguish from each other.

Where is the best place to put your reply? Above or below the quoted text?

BELOW! Some more recent standard email and newsreader programs have assumed a very problematic feature. They include the message which you are responding to below your message and expect you to type your reply above it. Don't allow that to happen! The proper order is

>Quote 1 (properly pruned)

Your response 1

>Quote 2 (properly pruned)

Your response 2

In other words, put each appropriately trimmed item that you choose to quote before each of your own comments respectively. Remove any remaining "post quoting." Let me emphasize. Do not leave the entire earlier posting, which you have been responding to, at the end of your own posting.

Answering above the original message is called top posting. This is sometimes, called �The Jeopardy Style.� Discussion groups are Q & A not A & Q.

These things SHOULD NEVER be in quoted messages:

Headers or any Subject, Date, From, Reply-To, To, information, nor any general salutations.
Entire posts! Keep your quoted lines down to 4-6 for each different issue you are addressing.
Widowed quote lines. This means a line consisting of only one word getting stuck between two regular length lines of quoted text. You make the digest listing TWICE as long when you allow that. If the quoted material comes out with an orphaned word, take the time to move everything around so there aren't a bunch of holes in your post. Often this is a problem with keeping the font for your mail program too low. Please change to a bigger font size if your quotes are producing orphaned words.
Sig lines, signature text, ads or footers from previous posts (you know, like the ones that tell you how to unsubscribe or how to contact the list owners, etc.)

Posting - How Do I Edit My Messages?

Help! I've been asked to "edit my messages" but I don't know how!

We were all new once, so don't let it bother you that you don't know how to edit. :) Editing a message is very easy. With a little practice, you'll wonder how you ever got along without it!

When you are replying to a post, hit the REPLY button just as you have been doing. Hitting the REPLY button will include the entire OLD message in the NEW message you are creating. The goal of "editing" your message is to get rid of any information from the previous post that you don't need in order for your reply to make sense.

To edit, put your cursor at the top left of the section you DON'T want to include (for example the To/From/Subject stuff or the message footers and people's signature lines. Click and hold the left mouse button and drag across the section to highlight it. Then hit both the delete key and the space bar or enter key (whatever is comfortable for you) and it will remove the unwanted section. If you accidentally remove more than you intended, go to the menu bar at the top of the screen, look under EDIT and click on "Undo".... then start again. 'Undo' is also available from the menu that pops up when you right click on the mouse. Or pressing the CTRL button along with the Z button will also "undo" the last action.

Also, when you are replying to different portions of a previous message, it is normal procedure to skip to the different portions you are replying to using the "question, answer, question, answer" format discussed in the previous section. Just make sure you hit the Enter key to leave a space after the quoted text and include your comments below that section of the message so that people can tell where the quoted text ends and your replies begin. It makes it so much easier for everyone to understand what you are replying to.

You might be wondering why we ask people to please edit their messages. There are many reasons to dislike excessive quoting. The most common are:

1. Some people are visually handicapped and use "screen readers"

2. Some people pay for their download/transfer usage or pay for their time online on a per-minute or per-hour basis.

3. It clutters up the Digests and makes them darn near impossible to read.

4. It makes it more difficult to follow the discussion. If your reply looks like it's part of the quoted portion, it can easily be missed. Also, if you don't include *any* quoted material, your reply won't make any sense to anybody. But most importantly,

5. The List Mom doesn't like unedited posts. Can we say "pet peeve?" :)

ACRONYMS/SHORTHAND

Internet users in general have developed their own shorthand for e-communications. There is a comprehensive list of e-shorthand and emoticons (those little smiley faces made up of keyboard characters to indicate emotion) that can be found at the website here: http://www.stevegrossman.com/jargpge.htm

Another smaller, yet Early Edition skewed list can be found here: http://www.geocities.com/Hollywood/Makeup/3281/acronym.htm

For anything not covered in either of those sites, the general thing to keep in mind is that fans of a particular series will most often make acronyms out of the episode titles (DWAR for "Don't Walk Away Renee," etc.), out of the character names (GH for Gary Hobson), or out of the actor names (FS for Fisher Stevens). Keep those things in mind, and you shouldn't have any troubles.

Some commonly used acronyms/emoticons include:

LOL = Laughing out Loud
ROFLOL = Rolling of Floor Laughing out Loud
TPTB = The Powers That Be
TIIC = The Idiots In Charge
OT = Off Topic
TAN = Tangent
IMO = In My Opinion
IMHO = In My Humble Opinion
YMMV = Your Mileage May Vary
<g> = grin
<G> = big grin
<eg> = evil grin

Acknowledgements:

Information contained in this email netiquette document has been culled from various sources. The list below contains some of those sources as well as other informative documents on Netiquette and proper quoting techniques. I recommend reading them all too thoroughly familiarize yourself with the process. Many of them are geared towards Usenet users, but the principles are the same.

ListManager's FAQ Page with section on "How Do I Edit?" - geared towards Onelist/eGroups/YahooGroups users.

Quoting Text in Replies from the news.newusers.questions FAQ.
A bit more on the Netiquette and quoting by John Corliss.
Quoting from Zen and the Art of the Internet.
Trim down your quotes in Email Group Netiquette Guidance
Email Quotes and Inclusion Conventions
Quoting in JafSoft Limited's Introduction to the Internet
Proper quoting Alex D. Baxter
The Basic Rules of Netiquette; search for "Quoting"
On netiquette by Julie Waters; search for "Quoting".
Email Netiquette by Randy Ryan
http://www.ultranet.com/~mobius/Roadmap/map07.html
http://www.geocities.com/CapitolHill/1236/nomime.html
http://www.uwasa.fi/~ts/http/quote.html
http://www.uwasa.fi/~ts/http/tsfaq.html
Configuring Mail Clients to Send Plain ASCII Text from G. Boyd

This document, as well as the complete "Early Edition Lovers" list rules can be found at: http://groups.yahoo.com/group/earlyedition/files/EEL_Rules_and_Guidelines/

Note: You *must* be a member of the list and have already converted/merged your account with a Yahoo! ID in order to have access to the files area on the list's website. If you haven't already merged your account, go to http://groups.yahoo.com/convwiz and follow their directions. Then go back to the list's main page (http://groups.yahoo.com/group/earlyedition) and make sure you're signed in.

This document is: http://earlydues.usanethosting.com/ieel/netiquette.htm
Last Messed With: August 13, 2004

Reply | Forward | Messages in this Topic (51)

#26962

From: "marnieb222" <marnieb222@...>
Date: Wed Dec 31, 2008 2:52 pm
Subject: Re: Newspaper column on Dercums

marnieb222

Offline

Don

Thanks for the information - I live in Ventura but only get the paper
Thurs through Sun.

I was diagnosed with DD in OCT this year by Dr. Herbst - Please feel
free to contact me by private email anytime.

Regards,
Marnie


--- In Dercums_Disease@yahoogroups.com, "Don B" <dercums@...> wrote:
>
> I read a column by Dr. Peter Gott in my local Ventura county newspaper
> answering a question about Dercum's Disease.  It was a reasonable
> answer, aside from the fact that he placed Karen Herbst in San
> Francisco.  He did reference her website, which was good.
>
> The link to the article is:
>
>
http://www.suburbanchicagonews.com/beaconnews/lifestyles/gott/1351339,2_
7_GOTT_S1.article
>

Reply | Forward | Messages in this Topic (3)

#26961

From: "Don B" <dercums@...>
Date: Tue Dec 30, 2008 7:43 pm
Subject: Newspaper column on Dercums

dercums

Offline

I read a column by Dr. Peter Gott in my local Ventura county newspaper
answering a question about Dercum's Disease.  It was a reasonable
answer, aside from the fact that he placed Karen Herbst in San
Francisco.  He did reference her website, which was good.

The link to the article is:

http://www.suburbanchicagonews.com/beaconnews/lifestyles/gott/1351339,2_7_GOTT_S\
1.article

Reply | Forward | Messages in this Topic (3)

#26960

From: Bonnie Williams <bonnie4340@...>
Date: Tue Dec 30, 2008 5:30 pm
Subject: Re: How to see Dr Herbst?

bonnie19562003

Offline

Thank you very much DR Herbst will do soon as i can get the money for the trip.Thanks so much for your reply,sincerely Bonnie in Texas

--- On Tue, 12/30/08, Karen Herbst <kaherbst@...> wrote:

From: Karen Herbst <kaherbst@...>
Subject: Re: [Dercums_Disease] How to see Dr Herbst?
To: Dercums_Disease@yahoogroups.com
Date: Tuesday, December 30, 2008, 11:20 AM

Anyone that wants an appointment with me can call 619-543-6303 and ask for Beatrice. Tell her you have fatty lumps and need a consultation.

On Sat, Dec 27, 2008 at 5:13 PM, bonnie <bonnie4340@sbcgloba l.net> wrote:

I live in dallas ft woth texas I would love a consoltation with
her.Does she only take private insurance or i wonder if she works with
evercare medicaid.Can I get some info on anyone who has seen her and
what kinds of treatment does she prescribe?I am looking to try lipo but
would like to have her look at me to see if i am a candidate.I am so
covered in these lumps also I want to have lap band.And I would like to
see her views on that i know i have a fat mass in my upper left under
the rib cage but it does not show on the scat scan but I know it is
there.If you like Email me at my email addy I get confused on this
board.bonnie

#26959

From: "Karen Herbst" <kaherbst@...>
Date: Tue Dec 30, 2008 5:20 pm
Subject: Re: How to see Dr Herbst?

contactforms...

Offline

Anyone that wants an appointment with me can call 619-543-6303 and ask for Beatrice. Tell her you have fatty lumps and need a consultation.

On Sat, Dec 27, 2008 at 5:13 PM, bonnie <bonnie4340@...> wrote:

I live in dallas ft woth texas I would love a consoltation with
her.Does she only take private insurance or i wonder if she works with
evercare medicaid.Can I get some info on anyone who has seen her and
what kinds of treatment does she prescribe?I am looking to try lipo but
would like to have her look at me to see if i am a candidate.I am so
covered in these lumps also I want to have lap band.And I would like to
see her views on that i know i have a fat mass in my upper left under
the rib cage but it does not show on the scat scan but I know it is
there.If you like Email me at my email addy I get confused on this
board.bonnie

#26958

From: Pamela Harrison <ozziespamela@...>
Date: Tue Dec 30, 2008 4:49 pm
Subject: Dorrit

ozziespamela

Offline

Hi Dorrit,

I'm glad to hear your surgery went well. I know how miserable lymphedema can be. I hope you can get treatment for it soon.

Hugs and spoons,

Pamela

Reply | Forward | Messages in this Topic (32)

#26957

From: "SURI" <suri@...>
Date: Mon Dec 29, 2008 10:51 am
Subject: Will Be Away

suri_chimom

Offline

I have to change my settings to "no mail" for awhile. I am way behind from not being on here over the holiday and my brothers family is coming to visit with us for a few weeks (so I won't be on here). I will reset my mail when I have recovered from their visit and things get back to normal.

Happy New Year!

Love to all,

Suri

Reply | Forward | Messages in this Topic (1)

#26956

From: Marnie Brooks <marnieb222@...>
Date: Sun Dec 28, 2008 4:39 am
Subject: Re: How to see Dr Herbst?

marnieb222

Offline

Bonnie

Dr Herbst has a very informative website at http://www.lipomadoc.org with all the contact info and even a recommendations page.

Take care,

Marnie

From: bonnie <bonnie4340@...>
To: Dercums_Disease@yahoogroups.com
Sent: Saturday, December 27, 2008 5:13:16 PM
Subject: [Dercums_Disease] How to see Dr Herbst?

I live in dallas ft woth texas I would love a consoltation with
her.Does she only take private insurance or i wonder if she works with
evercare medicaid.Can I get some info on anyone who has seen her and
what kinds of treatment does she prescribe?I am looking to try lipo but
would like to have her look at me to see if i am a candidate.I am so
covered in these lumps also I want to have lap band.And I would like to
see her views on that i know i have a fat mass in my upper left under
the rib cage but it does not show on the scat scan but I know it is
there.If you like Email me at my email addy I get confused on this
board.bonnie

#26955

From: "bonnie" <bonnie4340@...>
Date: Sun Dec 28, 2008 1:13 am
Subject: How to see Dr Herbst?

bonnie19562003

Offline

I live in dallas ft woth texas I would love a consoltation with
her.Does she only take private insurance or i wonder if she works with
evercare medicaid.Can I get some info on anyone who has seen her and
what kinds of treatment does she prescribe?I am looking to try lipo but
would like to have her look at me to see if i am a candidate.I am so
covered in these lumps also I want to have lap band.And I would like to
see her views on that i know i have a fat mass in my upper left under
the rib cage but it does not show on the scat scan but I know it is
there.If you like Email me at my email addy I get confused on this
board.bonnie

#26954

From: Fabric100@...
Date: Sat Dec 27, 2008 11:31 pm
Subject: Re: Emergency Room Visit Reply from Nomad

fabric102

Offline

Michelle--

Count your blessings that the ER doctor had even heard of Dercum's, much less mentioned it! Sheesh--that is amazing. We should all write down the name of the that doctor. If the doctor didn't suggest a specific specialist, you might contact the ER again and ask the doctor to call you back. Often times, in the heat of the moment in the ER, with all of the attendant distractions, the doctors forget such items of follow-up. He/she might just know of someone in the area that is at least familiar with DD and will know how to rule out other possibilities. If you are geographically close to San Diego, Dr. Herbst is your best bet. If you decide to get lumps removed, definitely send her tissue samples. My advice would be to stick to a plastic surgeon for removals.

Hope you are feeling better soon,
Anne

Listen to 350+ music, sports, news radio stations – including songs for the holidays – FREE while you browse. Start Listening Now!

#26953

From: "bonnie" <bonnie4340@...>
Date: Fri Dec 26, 2008 5:09 pm
Subject: Re: Emergency Room Visit

bonnie19562003

Offline

--- In Dercums_Disease@yahoogroups.com, "michellesellpa"
<michellesellpa@...> wrote:
>
> Christmas Eve I woke and was in such pain. My body just ached and I
> noticed that some of my lipomas were hurting, like a stabbing pain.
> Now, I have gotten this feeling before but usually as fast as it
comes,
> is as fast as it goes. This time it was just hanging around. So, I
> decided to go to the emergency room on Christmas eve morning
because I
> didn't want this to ruin my next 2 days. The ER doctor there
prescribed
> me Tramadol for the pain and I asked what he thinks my problem is
and
> he said I have my sneaky suspicion but, you will have to see a
> specialist. Then as I was leaving he said Dercums or angiolipomas.
And
> I thought ok, well I figured that but, now I have to see a
specialist
> to get officially diagnosed. The tramadol is helping but, they have
me
> taking 1 every 6 hours and after 3 days of pain, it is not helping.
I
> don't know what to do. And I don't know what "specialist" I should
go
> see. Anyone have any suggestions?
>
They will usually send you to a dermatoligist and than they will
refer you to a surgeon and than they will look at you and say.We can
not remove all of them only a couple unless you have some really good
insurance they may say they can take more.Either way do not expect
much sympathy you may have to tell the dr. what they are.Keep your
chin up go in there with a positive atitude.Hugs Bonnie

#26952

From: Anne Stuart <krissieo@...>
Date: Fri Dec 26, 2008 6:27 pm
Subject: Re: Emergency Room Visit

krissieo_2000

Offline

For me tramadol helped for a short while and then stopped. Best relief I've gotten has been on Neurontin and Lyrica (and vicodin when it's particularly bad).

Krissie O

On Dec 26, 2008, at 7:55 AM, michellesellpa wrote:

Christmas Eve I woke and was in such pain. My body just ached and I
noticed that some of my lipomas were hurting, like a stabbing pain.
Now, I have gotten this feeling before but usually as fast as it comes,
is as fast as it goes. This time it was just hanging around. So, I
decided to go to the emergency room on Christmas eve morning because I
didn't want this to ruin my next 2 days. The ER doctor there prescribed
me Tramadol for the pain and I asked what he thinks my problem is and
he said I have my sneaky suspicion but, you will have to see a
specialist. Then as I was leaving he said Dercums or angiolipomas. And
I thought ok, well I figured that but, now I have to see a specialist
to get officially diagnosed. The tramadol is helping but, they have me
taking 1 every 6 hours and after 3 days of pain, it is not helping. I
don't know what to do. And I don't know what "specialist" I should go
see. Anyone have any suggestions?

#26951

From: "michellesellpa" <michellesellpa@...>
Date: Fri Dec 26, 2008 5:35 pm
Subject: Re: Emergency Room Visit Reply from Nomad

michellesellpa

Online Now

Thank you for the information. I am going to go on that website and I
hope I will find some answers.


--- In Dercums_Disease@yahoogroups.com, Rodney Bingham
<nomadeclipse@...> wrote:
>
> Hello
> �
> I also have the Dercums tissue all over and angio lipomas.� I was
on Tramadol for about a year but was taking so many with very little
relief.� I eventually was prescribed Oxycontin and Lyrica.� These
medications have offered the most long term relief.� I have seen
hundreds of doctors over the last 8 years and not one of them can
actually cure this condition.� I would go to Lipomadoc.org for
suggestions!� Good luck...
>
> --- On Fri, 12/26/08, michellesellpa <michellesellpa@...> wrote:
>
> From: michellesellpa <michellesellpa@...>
> Subject: [Dercums_Disease] Emergency Room Visit
> To: Dercums_Disease@yahoogroups.com
> Date: Friday, December 26, 2008, 7:55 AM
>
>
>
>
>
>
> Christmas Eve I woke and was in such pain. My body just ached and I
> noticed that some of my lipomas were hurting, like a stabbing pain.
> Now, I have gotten this feeling before but usually as fast as it
comes,
> is as fast as it goes. This time it was just hanging around. So, I
> decided to go to the emergency room on Christmas eve morning
because I
> didn't want this to ruin my next 2 days. The ER doctor there
prescribed
> me Tramadol for the pain and I asked what he thinks my problem is
and
> he said I have my sneaky suspicion but, you will have to see a
> specialist. Then as I was leaving he said Dercums or angiolipomas.
And
> I thought ok, well I figured that but, now I have to see a
specialist
> to get officially diagnosed. The tramadol is helping but, they have
me
> taking 1 every 6 hours and after 3 days of pain, it is not helping.
I
> don't know what to do. And I don't know what "specialist" I should
go
> see. Anyone have any suggestions?
>

#26950

From: Rodney Bingham <nomadeclipse@...>
Date: Fri Dec 26, 2008 3:17 pm
Subject: Re: Emergency Room Visit Reply from Nomad

nomadeclipse

Online Now

Hello

I also have the Dercums tissue all over and angio lipomas. I was on Tramadol for about a year but was taking so many with very little relief. I eventually was prescribed Oxycontin and Lyrica. These medications have offered the most long term relief. I have seen hundreds of doctors over the last 8 years and not one of them can actually cure this condition. I would go to Lipomadoc.org for suggestions! Good luck...

--- On Fri, 12/26/08, michellesellpa <michellesellpa@...> wrote:

From: michellesellpa <michellesellpa@...>
Subject: [Dercums_Disease] Emergency Room Visit
To: Dercums_Disease@yahoogroups.com
Date: Friday, December 26, 2008, 7:55 AM

Christmas Eve I woke and was in such pain. My body just ached and I
noticed that some of my lipomas were hurting, like a stabbing pain.
Now, I have gotten this feeling before but usually as fast as it comes,
is as fast as it goes. This time it was just hanging around. So, I
decided to go to the emergency room on Christmas eve morning because I
didn't want this to ruin my next 2 days. The ER doctor there prescribed
me Tramadol for the pain and I asked what he thinks my problem is and
he said I have my sneaky suspicion but, you will have to see a
specialist. Then as I was leaving he said Dercums or angiolipomas. And
I thought ok, well I figured that but, now I have to see a specialist
to get officially diagnosed. The tramadol is helping but, they have me
taking 1 every 6 hours and after 3 days of pain, it is not helping. I
don't know what to do. And I don't know what "specialist" I should go
see. Anyone have any suggestions?

#26949

From: "michellesellpa" <michellesellpa@...>
Date: Fri Dec 26, 2008 12:55 pm
Subject: Emergency Room Visit

michellesellpa

Online Now

Christmas Eve I woke and was in such pain. My body just ached and I
noticed that some of my lipomas were hurting, like a stabbing pain.
Now, I have gotten this feeling before but usually as fast as it comes,
is as fast as it goes. This time it was just hanging around. So, I
decided to go to the emergency room on Christmas eve morning because I
didn't want this to ruin my next 2 days. The ER doctor there prescribed
me Tramadol for the pain and I asked what he thinks my problem is and
he said I have my sneaky suspicion but, you will have to see a
specialist. Then as I was leaving he said Dercums or angiolipomas. And
I thought ok, well I figured that but, now I have to see a specialist
to get officially diagnosed. The tramadol is helping but, they have me
taking 1 every 6 hours and after 3 days of pain, it is not helping. I
don't know what to do. And I don't know what "specialist" I should go
see. Anyone have any suggestions?

#26948

From: "Dorrit Hvam" <fiori68@...>
Date: Fri Dec 26, 2008 12:08 am
Subject: Merry Christmas

fiori68

Offline

A Merry Christmas to all members of the group.
I am doing OK after my breast cancer operation, but very bothered with
swellings (lymphedema) in the breast and surrounding areas. The waiting
list for treatment of lymphedema is very long, I have waited for 4
months now.
I look into the list from time to time, but am sorry that I have not
been writing entries lately. Just too tired.

Hope you will all have a painfree Christmas, and that someone somewhere
soon will find out the mystery of DD.

Best wishes,
Dorrit

#26947

From: Suzi More <suzimore92@...>
Date: Thu Dec 25, 2008 12:03 am
Subject: Re: Re: Question from Dr. Herbst..please respond!

suzisblue

Offline

I have just gone on my Christmas vacation
and am catching up on the emails.

I am not exactly sure what "flushing" means,
I do get red spotting on my arms and legs.

I have terrible pain in hands and feet.

I have not only pads of dercums tissue on top of my feet but underneath too
and they swell and hurt depending on the shoes I am wearing at the time.

I have pads of dercums tumor on some of the fingers on each hand that swell and cause
pain in the nerves, I have pains that shoot up my arms and cause me to have cramping
in my hands when I play the guitar, the piano or write letters.

It is so horrible, I must put my hands down and rub over the tops of them and flatten
them because they are cramped up and it is so painful.

All around my ribcage, I have a thick midriff of fatpads that seem
to choke the area at times.

I have very long hair and after showering, if the hair touches my shoulders, I feel a
terrible sharp needle like pain in the back and shoulders.

My breasts are in a great deal of pain and I must buy new front closure bras every other
month because they wear out so quickly from the heavy weight of the breasts. My plastic
surgeon thinks that maybe the needle like pain in the shoulders is because of the weight
of the breasts pulling on the straps of the bra but so much of my time in my house I spend
in nighties, how can the shoulder straps be affecting the back.

I have severe migraines and the surgeon may be able to take the tumors out from the back
of my skull (they are not on the outside, they are on the inside), this must wait till the end
of June, in case I suffer some paralysis from the surgery. (there is a nerve on one side of the
back of the skull the surgeon says) As I write this I am experiencing the usual ringing in my
ears that sometimes is like a banging.

On bad days, the pain is so intense all over my body
that I have found myself taking not one but four tramadol.

Going to sleep is hard until I find a position that is safe from sharp pains that I get if my gut is in
the wrong position.There is a large tumor on the right side still that popped up after others were
taken out this past year, a few days ago, the surgeon said we could get it out later in the Spring
when others get bigger and he can find them, for some reason, he will do between three and five at a time.

Thank God that my plastic surgeon after three operations was able to remove enough tumors that
have not come back (Knock on Wood) from my lower groin that I am now able to sleep through
the night and not have to go to the bathroom several times to urinate because the tumors were pressing
against the bladder.

To have a full night's sleep after four bad years of being up on and off all night long is the best
Holiday present I could ever receive.

I have the fortune to have great purpose in my life and I will fight this disease no matter what happens.
I just get tired of hearing well-meaning people tell me how "lucky" I am that this is not cancer.

Best wishes to all and to all a "Good Night"

Suzi

From: Teri <datguise@...>
To: Dercums_Disease@yahoogroups.com
Sent: Friday, December 19, 2008 6:00:29 PM
Subject: [Dercums_Disease] Re: Question from Dr. Herbst..please respond!

Hands and feet.
--- In Dercums_Disease@ yahoogroups. com, "frincess51" <frincess51@ ...>
wrote:
>
> Got this question from Dr. Herbst today and she asked me to post this
> on all of the Dercum's groups, so please answer by posting here and
> help her out with this information. ...
> Thanks and Happy Holidays,
> Carole
>
> She asked....
>
> How many of you get flushing on your hands and feet and face - all
> three?
>

Reply | Forward | Messages in this Topic (26)

#26946

From: Marnie Brooks <marnieb222@...>
Date: Wed Dec 24, 2008 2:14 pm
Subject: Re: Anyone that's seen Dr Karen?

marnieb222

Offline

Hi Karen

Sorry for the late reply. It turns out that Dr. Herbst is part of my PPO (Cigna) health network and I only have to pay a $20 co-pay.

v/r

Marnie

From: Karen Krzeminski <kamperk06@...>
To: dercums_disease@yahoogroups.com
Sent: Monday, October 27, 2008 7:30:38 AM
Subject: [Dercums_Disease] Anyone that's seen Dr Karen?

My new PCP is going to write up a referral to see Dr Karen in San Diego.
Does your insurance cover services for Dr Karen or did you have to pay out-of-pocket?

Thanks! Karen K....

Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org

When your life is on the go�take your life with you. Try Windows Mobile� today

Reply | Forward | Messages in this Topic (10)

#26945

From: jhelai9@...
Date: Tue Dec 23, 2008 11:09 pm
Subject: Re: Pain in inner thighs

elaine103056

Offline

I have that kind of pain too Pam..My Dr thought I possibly had a blood clot..But after two weeks it now comes and goes..

One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now.

#26944

From: Karen Krzeminski <kamperk06@...>
Date: Wed Dec 24, 2008 3:52 am
Subject: RE: Pain in inner thighs

aqua12062

Offline

Oh my gosh! All day today my left leg..inside of knee and behind knee!! Lumps and pain is awful! Dr. Parker put me on Neurontin today.
My head feels sorta funny. I tolerated the Oxycontin so I thouhgt I could tolerate anything! LOL...
I'll adjust to it I'm sure. I just want this pain and I mean PAIN gone!!
Sheesh...
Happy Holidays to everyone!!
I'm getting an appt with Dr. Karen scheduled and that is a Merry Christmas for me...
My PCP is going to work with her. He said he wants all the paperwork, tests, whatever she suggests to go to him so we can coordinate care.
I'm feeling so giddy about this, like I've won the lottery or something.
Thanks to you all here who support us in our times of serious need....Merry Christmas...

Karen K...

Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org

To: Dercums_Disease@yahoogroups.com
From: ozziespamela@...
Date: Tue, 23 Dec 2008 08:27:13 -0800
Subject: Re: [Dercums_Disease] Pain in inner thighs

Yes Rodney, Especially behind the knees. I had about a week where I could barely hobble with my cane. the backs of my knees felt like a knife was wedged in them. I hope yours settles down soon,
Hugs and spoons,
Pamela

From: nomadeclipse <nomadeclipse@yahoo.com>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, December 22, 2008 10:01:47 PM
Subject: [Dercums_Disease] Pain in inner thighs

Hello

First of all Dr. Herbst I also have had the episodes of flushing in
face and hands. I am not sure about feet. I am currently having grat
pain in my inner thighs which go from the inner groin all the way down
to my calves running along the muscles and tendons. I have had
difficulty walking occasionally. I feel like my tendons hae tightened
or the tissue has constricted even hehind my knees. I also have this
same problem from my inner arm pits all the way down to my wrists. Is
anyone else familiar with this.

Thanks

Life on your PC is safer, easier, and more enjoyable with Windows Vista�. See how

#26943

From: Mitzi Murray <empoweringwords@...>
Date: Tue Dec 23, 2008 10:11 pm
Subject: Re:Beginning Stages of Dercums

empoweringwords

Offline

Hello Michelle... In the beginning, the pain was not constant, It was centered around a few lumps and in my joints,i was diagnosed with FIbromyalgia and wrote off by my doctor.. told to exercise and loose weight and i would be fine.. i had to go through a drug class and be tested for illegal drugs in order to have 30 vicoden a month... and i soon ended up loosing my job and this insurance. I progressed the next few years with flairs and periods of low pain, but the lumps grew in number and the flairs started getting stronger and longer.

Now that i have advanced DD i have constant pain all the time.. but not everywhere, all the time. My pain level is at least a 3, all the time, all day, but this 3 is my 'normal' and i use herbal medication.. i live in Oregon, we are allowed Medical Marijuana and i have a legal card. Medical Marijuana (MMJ) takes care of my every day pain, helps my muscles have flexibility and helps my mood and appetite.

With the weather like this.. cold, turbulent, low pressure systems, my pain has been a constant 5 and i have been taking both vicoden and oxycodone daily, all day long... after 6 hours without a narcotic the pain is intolerable and i become miserable in a short time... But, because i do have the pain meds, life is doable and i love life. and i do believe in the spring i will be able to go off the narcotics, again.. i hope..

I have lumps from head to toe and there area few that are really effecting my quality of life, i am trying to figure out what to do with a few of them. i have a couple affecting the back of my knee, which is causing my whole leg to ache to the point i want to just cut it off!

I used to have flairs with periods of fairly pain free days.... the flairs have become more frequent, lasting longer and causing more problems. At this point i have been in a flair for 8 weeks..i am ready for it to be over!!!

Attitude will save your life with this disease... education and acceptance goes a long way, too. Be your own advocate, educate yourself and take peer related information to your doctor, they seem to listen to other doctors.

The most frustrating part of this disease to me, after the acceptance part... is listening to doctors and other health care givers telling me to do more exercising, to loose weight or that lipomas do not hurt. The frustration comes from the ignorance of others... and i don't expect everyone to know about Dercums,, but I do expect health care professionals to be willing to learn, to be tolerant and helpful.

I have accepted that this pain is here, that it is my companion, so how can i make it livable. Medical Marijuana, narcotics, stretching, breathing, heat and following the Tao have become my new way of life. I have learned to stop resisting the pain, and allowing Life to support me.. i have a very good support group/people around me.. it has taken me time, effort and a lot of screaming and releasing to get here, but here i am.

I acknowledge that you have a painful journey ahead of you, but do not let it win... do not fight it.. allow it, accept it and find the good in your situation... for me, not having to work has been a blessing... and having the support to heal my life has been a blessing... so, there are many blessings in this pain.

Mitzi

Hi everyone! My name is Michelle, I am the mother of 4 boys. I am
married and live in PA. I started with a lump on the back of my neck
in 2003, I went to the dermatologist, and he said it was a lipoma and
would be fine. Unless I wanted to have it removed for cosmetic
reasons they don't do anything for them. I began to have symptoms of
what my doctor called "depression" . I was tired all the time, my body
ached especially my back, I had headaches all the time and I just
didn't feel like doing anything, this was in 2004. I began to take
Cymbalta for the next year and a half. I did start to feel slightly
better, but in spurts. My doctor also told me I had high cholesterol
and I was hypoglycemic. In 2005 my doctor retired. And shortly after,
I noticed that I had been slowly gaining weight (since the Cymbalta)
and my lipomas had multiplied. I now have the same symptoms: back
pain, neck pain, headaches, joint pain, excessive sweating in right
armpit, facial numbness (off and on), tingling fingers in right arm
(off and on), multiple lipomas with stabbing pain (off and on) and
fatigue. I have read alot on Dercums disease. I know I have the
symptoms. The only problem is, I keep reading that everyone who has
this disease is in constant pain. But, I am not. So, could anyone
please tell me if their lipomas were always painful, or was it in
spurts at first? I don't know if this is the beginning stages of
Dercums or if these lipomas are only painful sometimes because of
their location. Could anyone tell me what it was like for them in the
beginning? Thank you in advance.

Visit my eBay Store and Auctions

LoveMyStuff-Store

My Home Page

Sophieology

#26942

From: "Ben Rossington" <Ben.Rossington@...>
Date: Tue Dec 23, 2008 8:48 pm
Subject: Re: Pain in inner thighs

ben09880

Offline

My knees go through the same thing...  It is a new symptom for me though....

arg.

On 12/23/08, Marnie Brooks <marnieb222@...> wrote:
> Hi Rodney
>
>  I experience the tightening of the tendons/muscles around the knees if I
> sit too long, at work I have to make sure I stand up and walk around every
> half hour or so. If I get distracted and sit for longer, or while on a long
> car ride, when I do get up, I really hobble around for a while. Usually it
> will get better with walking in 10 or 15 minutes.
>
> Take care,
> Marnie
>
>
>
>
> ________________________________
> From: Pamela Harrison <ozziespamela@...>
> To: Dercums_Disease@yahoogroups.com
> Sent: Tuesday, December 23, 2008 8:27:13 AM
> Subject: Re: [Dercums_Disease] Pain in inner thighs
>
>
> Yes Rodney, Especially behind the knees. I had about a week where I could
> barely hobble with my cane. the backs of my knees felt like a knife was
> wedged in them. I hope yours settles down soon,
> Hugs and spoons,
> Pamela
>
>
>
>
> ________________________________
> From: nomadeclipse <nomadeclipse@ yahoo.com>
> To: Dercums_Disease@ yahoogroups. com
> Sent: Monday, December 22, 2008 10:01:47 PM
> Subject: [Dercums_Disease] Pain in inner thighs
>
>
> Hello
>
> First of all Dr. Herbst I also have had the episodes of flushing in
> face and hands. I am not sure about feet. I am currently having grat
> pain in my inner thighs which go from the inner groin all the way down
> to my calves running along the muscles and tendons. I have had
> difficulty walking occasionally. I feel like my tendons hae tightened
> or the tissue has constricted even hehind my knees. I also have this
> same problem from my inner arm pits all the way down to my wrists. Is
> anyone else familiar with this.
>
> Thanks
>
>
>
>
>
>

#26941

From: Marnie Brooks <marnieb222@...>
Date: Tue Dec 23, 2008 4:52 pm
Subject: Re: Pain in inner thighs

marnieb222

Offline

Hi Rodney

I experience the tightening of the tendons/muscles around the knees if I sit too long, at work I have to make sure I stand up and walk around every half hour or so. If I get distracted and sit for longer, or while on a long car ride, when I do get up, I really hobble around for a while. Usually it will get better with walking in 10 or 15 minutes.

Take care,

Marnie

From: Pamela Harrison <ozziespamela@...>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, December 23, 2008 8:27:13 AM
Subject: Re: [Dercums_Disease] Pain in inner thighs

From: nomadeclipse <nomadeclipse@ yahoo.com>
To: Dercums_Disease@ yahoogroups. com
Sent: Monday, December 22, 2008 10:01:47 PM
Subject: [Dercums_Disease] Pain in inner thighs

#26940

From: "marnieb222" <marnieb222@...>
Date: Tue Dec 23, 2008 5:49 am
Subject: Re: Question from Dr. Herbst..please respond!

marnieb222

Offline

Face - yes, sometimes neck & upper chest involved
Hands - yes, palms get so red they look like raw hamburger
Feet - rarely - my soles really burn and feel like they are giving
off waves of heat - but I've never looked at them to see if they were
red.

Marnie



--- In Dercums_Disease@yahoogroups.com, "frincess51" <frincess51@...>
wrote:
>
> I think by flushing, she means getting hot and red.  She is
> particularly interested in knowing about the feet.
> Carole
>
> --- In Dercums_Disease@yahoogroups.com, "frincess51" <frincess51@>
> wrote:
> >
> > Got this question from Dr. Herbst today and she asked me to post
this
> > on all of the Dercum's groups, so please answer by posting here
and
> > help her out with this information....
> > Thanks and Happy Holidays,
> > Carole
> >
> > She asked....
> >
> > How many of you get flushing on your hands and feet and face -
all
> > three?
> >
>

Reply | Forward | Messages in this Topic (26)

#26939

From: Pamela Harrison <ozziespamela@...>
Date: Tue Dec 23, 2008 4:27 pm
Subject: Re: Pain in inner thighs

ozziespamela

Offline

From: nomadeclipse <nomadeclipse@...>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, December 22, 2008 10:01:47 PM
Subject: [Dercums_Disease] Pain in inner thighs

#26938

From: Marnie Brooks <marnieb222@...>
Date: Tue Dec 23, 2008 5:01 am
Subject: Re: Beginning Stages of Dercums

marnieb222

Offline

Michelle

I have had multiple lipomas since I was 25 and had around 30 taken out sometime in the1980s. I did not have any pain associated with them.

In FEB 2007 I had an extremely emotional traumatic event at work which triggered a bunch of symptoms. When someone last year mentioned DD to me, I dismissed it because I did not assoicate the lipomas with joint or muscle pain, swelling, fatigue or weakness which seem to be my major symptoms. I was diagonesed with DD by Dr. Herbst in OCT 2008. I have over a hundred lipomas, but most of the time I do not associate pain with them, with the exception that I cannot lie on either side for more than a few minutes.

Take care,

Marnie

From: SURI <suri@...>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, December 22, 2008 1:42:17 PM
Subject: Re: [Dercums_Disease] Beginning Stages of Dercums

I didn't start out with pain every day... I had pain in my legs in Dec. 2007... each month during my menstrual cycle I had pain in my legs (lipomas in my legs)... around May 2007 I started having the pain while not on my period, but not every day... then they found a tumor on my ovary (may or may not be related)... I had to have a total hysterectomy. .. after that surgery I started having pain every day. Since August 2007 I have had pain every day, Some days I have very light pain (like today, Yippee!). I have only had two really bad stab pains today so far, but lots of itty bitty ones... but I do wonder if I am just getting used to it. (?) The itty bitty ones would have been perceived as bigger if this was Dec 2007... I think I may just be getting used to the pain, I don't know.

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

From: michellesellpa

To: Dercums_Disease@ yahoogroups. com

Sent: Sunday, December 21, 2008 6:31 PM

Subject: [Dercums_Disease] Beginning Stages of Dercums

Hi everyone! My name is Michelle, I am the mother of 4 boys. I am
married and live in PA. I started with a lump on the back of my neck
in 2003, I went to the dermatologist, and he said it was a lipoma and
would be fine. Unless I wanted to have it removed for cosmetic
reasons they don't do anything for them. I began to have symptoms of
what my doctor called "depression" . I was tired all the time, my body
ached especially my back, I had headaches all the time and I just
didn't feel like doing anything, this was in 2004. I began to take
Cymbalta for the next year and a half. I did start to feel slightly
better, but in spurts. My doctor also told me I had high cholesterol
and I was hypoglycemic. In 2005 my doctor retired. And shortly after,
I noticed that I had been slowly gaining weight (since the Cymbalta)
and my lipomas had multiplied. I now have the same symptoms: back
pain, neck pain, headaches, joint pain, excessive sweating in right
armpit, facial numbness (off and on), tingling fingers in right arm
(off and on), multiple lipomas with stabbing pain (off and on) and
fatigue. I have read alot on Dercums disease. I know I have the
symptoms. The only problem is, I keep reading that everyone who has
this disease is in constant pain. But, I am not. So, could anyone
please tell me if their lipomas were always painful, or was it in
spurts at first? I don't know if this is the beginning stages of
Dercums or if these lipomas are only painful sometimes because of
their location. Could anyone tell me what it was like for them in the
beginning? Thank you in advance.

#26937

From: jhelai9@...
Date: Mon Dec 22, 2008 11:08 pm
Subject: Re: Pain in inner thighs

elaine103056

Offline

I spent two weeks in bed several months ago because of the severe pain behind my right knee..Now I just tgake another pain pill for it..It is worse I think for us to stay bed ridden..I know it is for me

One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now.

#26936

From: "nomadeclipse" <nomadeclipse@...>
Date: Tue Dec 23, 2008 4:01 am
Subject: Pain in inner thighs

nomadeclipse

Online Now

Hello

First of all Dr. Herbst I also have had the episodes of flushing in
face and hands.  I am not sure about feet.  I am currently having grat
pain in my inner thighs which go from the inner groin all the way down
to my calves running along the muscles and tendons.  I have had
difficulty walking occasionally.  I feel like my tendons hae tightened
or the tissue has constricted even hehind my knees.  I also have this
same problem from my inner arm pits all the way down to my wrists.  Is
anyone else familiar with this.

Thanks

#26935

From: "SURI" <suri@...>
Date: Mon Dec 22, 2008 9:42 pm
Subject: Re: Beginning Stages of Dercums

suri_chimom

Offline

I didn't start out with pain every day... I had pain in my legs in Dec. 2007... each month during my menstrual cycle I had pain in my legs (lipomas in my legs)... around May 2007 I started having the pain while not on my period, but not every day... then they found a tumor on my ovary (may or may not be related)... I had to have a total hysterectomy... after that surgery I started having pain every day. Since August 2007 I have had pain every day, Some days I have very light pain (like today, Yippee!). I have only had two really bad stab pains today so far, but lots of itty bitty ones... but I do wonder if I am just getting used to it. (?) The itty bitty ones would have been perceived as bigger if this was Dec 2007... I think I may just be getting used to the pain, I don't know.

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

From: michellesellpa

To: Dercums_Disease@yahoogroups.com

Sent: Sunday, December 21, 2008 6:31 PM

Subject: [Dercums_Disease] Beginning Stages of Dercums

Hi everyone! My name is Michelle, I am the mother of 4 boys. I am
married and live in PA. I started with a lump on the back of my neck
in 2003, I went to the dermatologist, and he said it was a lipoma and
would be fine. Unless I wanted to have it removed for cosmetic
reasons they don't do anything for them. I began to have symptoms of
what my doctor called "depression". I was tired all the time, my body
ached especially my back, I had headaches all the time and I just
didn't feel like doing anything, this was in 2004. I began to take
Cymbalta for the next year and a half. I did start to feel slightly
better, but in spurts. My doctor also told me I had high cholesterol
and I was hypoglycemic. In 2005 my doctor retired. And shortly after,
I noticed that I had been slowly gaining weight (since the Cymbalta)
and my lipomas had multiplied. I now have the same symptoms: back
pain, neck pain, headaches, joint pain, excessive sweating in right
armpit, facial numbness (off and on), tingling fingers in right arm
(off and on), multiple lipomas with stabbing pain (off and on) and
fatigue. I have read alot on Dercums disease. I know I have the
symptoms. The only problem is, I keep reading that everyone who has
this disease is in constant pain. But, I am not. So, could anyone
please tell me if their lipomas were always painful, or was it in
spurts at first? I don't know if this is the beginning stages of
Dercums or if these lipomas are only painful sometimes because of
their location. Could anyone tell me what it was like for them in the
beginning? Thank you in advance.

#26934

From: Fabric100@...
Date: Mon Dec 22, 2008 8:18 pm
Subject: Re:Beginning Stages of Dercums

fabric102

Offline

Michelle,

Wow--I had three boys and a one girl--not sure about having four boys!! Just kidding--my goal as a much younger woman was to have five boys. :) Didn't quite make that goal.

Most people with DD do experience calmer periods and 'flare ups' where it seems that there are aliens attacking all parts of your body. As Pamela said, it can be a surprise every day which is one of the frustrating parts of this disorder/disease. If you haven't done so, I would encourage you to go to Dr. Herbst's website, www.lipomadoc.org. Read everything there is there, especially the results of the survey she published last year. It is one of the best 'catalogs' of DD symptoms that go far beyond lipomas and unexplained weight gain. Remember that 'blobs' of fat that hurt can be what is sometimes refered to as an 'unencapsulated' lipoma. In other words, it is a congregation of DD fat cells that do not have a clearly defined border to them.

Many people are finding a great deal of success by following Dr. Herbst's suggestions for diet and supplements. Though some of the medications are by prescription, many are not.

It is also my opinion that it is important to exclude other possible diseases. This can be a long, difficult process but many disorders mimic others and a competent, caring doctor will exclude all other causes. Now, how to find such a doctor--it is difficult. Most surgeons will request an MRI before removing a lipoma, at least the first time. The surgeon that first operated on my daughter (who has a nasty case of DD) explained that he wanted to make sure that she did not have a liposarcoma (which is a rare malignant fat cell tumor). He said that 'normal' lipomas often do not show up on MRI, but the liposarcoma has a distinctive look to it. This was done before we knew she had DD, but a subsequent surgeon had her MRI'd everywhere. I haven't heard of many others doing that, but it ruled out a lot of other possibilities. I should say that we have very comprehensive, cooperative insurance so that isn't an issue for us, as it is for many others.

If you decide to have any lipomas out, be certain to use only a surgeon who will listen to Dr. Herbst's recommendations, make certain to remove everything, take extra care to do as little damage to surrounding tissue and sew you up like he/she is a plastic surgeon working on a face. All of these steps help prevent excessive scar tissue and/or further lipomas. Also, be certain that you coordinate with Dr. Herbst to have your pathology slides sent to her. She can look at them under a microscope and help provide some answers for you.

What part of PA do you live in? (you needn't be specific) I LOVE going up to PA (I live in Northern Virginia), especially in the Amish areas. I didn't make it this year and miss the fresh produce, cheese and free range meats.

Feel free to go through the files and old messages to learn all that you can! Educate yourself, your family and your doctors!

Best wishes,
Anne

Listen to 350+ music, sports, news radio stations – including songs for the holidays – FREE while you browse. Start Listening Now!