Dercums_Disease : Messages : 24648-24679 of 29307

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

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#24678

From: "Renee' Rohde" <raenjad@...>
Date: Sat Mar 1, 2008 7:26 am
Subject: Re: Sweet moments to savor

rockin_robin...

Offline

thats so sweet of her. how cute. bless her heart.

On Sat, Feb 23, 2008 at 5:07 AM, calle_kitten <callekitten@...> wrote:

Hi all. I was babystitting tonite, 4 grandchildren ages 5,3,2,1. The 1
year old was sick sick. My kids i guess dont realize yet that I should
not be exposed to sickness. But oh well, on about my sweet moment.

I was holding the 2 year old in my lap. She has never talked with me
about this disease, i have talked with the five year old about it. I
do tell them all the time that Yaya is tired and can't do what I used
to do because i have an illness.

So, I was holding my 2 year old on my lap, and she was running her
fingers over my elbow joint, on the inside. I have clumps of lumps
there. I said what are you doing, honey, feeling ya ya.s bumps ?? She
ran her fingers over the spot a few more times, then reached down, and
kissed the spot that she could feel. And Said Poor YaYa. Then she
snuggled up in my lap and fell asleep.

There are stolen sweet moments to savor.

Carin/Calle AZ

Reply | Forward | Messages in this Topic (2)

#24677

From: Fabric100@...
Date: Fri Feb 29, 2008 7:41 pm
Subject: Re: Pain Mediciation

fabric102

Offline

Happy Leap Day!

I have to second what Cynthia wrote about finding a board certified anesthesiologist who also does pain management. It may take calling a few clinics to find one that you like, but they can be miracle workers. Also, take Dr. Herbst's article with you to see the pain specialist. You might also want to ask if they deal with neuropathic pain and not just orthopedic. Some pain clinics seem to specialize in sports injuries, arthritis, etc. The other benefit of using an anesthesiologist is that if you should need surgery, your pain doctor can be the anesthesiologist and manage post operative pain. This coordination of care can be close to a miracle!!!

Anne

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#24676

From: Karen Krzeminski <kamperk06@...>
Date: Fri Feb 29, 2008 4:57 pm
Subject: RE: Re: Pain Mediciation

aqua12062

Offline

Yea..I have a lot of little aliens in my lower back although they tried to remove all of them in December. Hurt pretty bad. The one in the crook of my arms is getting bigger and the skin has a strange color to it. Surgeon tried to remove that one (about 7cm around now) and missed some. Are you guys finding that when you have these removed the surgeon doesn't get all of it?? I have the one in my arm and wrist also that was missed. She said she removed lipoma from every incision but for sure she only got SOME...

To: Dercums_Disease@yahoogroups.com
From: jhelai9@...
Date: Fri, 29 Feb 2008 08:29:50 -0500
Subject: Re: [Dercums_Disease] Re: Pain Mediciation

I take Tramadol at night...I also take Amitriptilyne(sp?) also at night..I tried not taking the the latter at all but found it helps me sleep and it also helps with the muscle jerking..I dont know how or why but it does..I take the Tramadol at night but when there is severe pain I take another one. I am trying to not take too many pain meds yet....I have a lot of lower back pain because of the amount of lumps that are there and usually that is why I need another Tramadol...

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#24675

From: jhelai9@...
Date: Fri Feb 29, 2008 8:29 am
Subject: Re: Re: Pain Mediciation

elaine103056

Offline

I take Tramadol at night...I also take Amitriptilyne(sp?) also at night..I tried not taking the the latter at all but found it helps me sleep and it also helps with the muscle jerking..I dont know how or why but it does..I take the Tramadol at night but when there is severe pain I take another one. I am trying to not take too many pain meds yet....I have a lot of lower back pain because of the amount of lumps that are there and usually that is why I need another Tramadol...

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

#24674

From: "joycenreno2" <joycenlv@...>
Date: Fri Feb 29, 2008 1:17 pm
Subject: Re: Pain Mediciation

joycenreno2

Offline

since I have been on Tramadol ( the slow release version as I don't
  support the normal one ) my life has really changed because I can
  function once again.....

Cynthia,
What do you find different with the slow release tramadol that makes
you not support the normal one? I take up to 8 a day,(normal kind)
mostly at night, and was curious about the slow release version.

Thanks,
Joyce

#24673

From: "Cynthia" <c_prentice2003@...>
Date: Fri Feb 29, 2008 9:47 am
Subject: Re: Pain Mediciation

c_prentice2003

Offline

Hi there,

Can I suggest that the best way to get pain help is to see a Pain
Clinic because they are mainly Anaesthetists who know exactly how our
bodies work with pain meds. I really did not want to have a 24/7
medication for pain control because I was scared of addiction, but
since I have been on Tramadol ( the slow release version as I don't
support the normal one ) my life has really changed because I can
function once again.....

I have other medications including an anti-epileptic drug to help
with muscle contractions which helps me sleep.  But when it comes
down to individuals, we are all different and it really is trial and
error.

Hugs,
Cynthia

--- In Dercums_Disease@yahoogroups.com, "kruiz510" <kruiz510@...>
wrote:
>
> --- In Dercums_Disease@yahoogroups.com, "Sue Ann Farasy Mueller"
> <megs84@> wrote:
> >For everyday i take, plaquenil 2xdaily (this helped my flares for
the
> first little while really well--its normally used for lupus), i
take
> lyrica 75 mg at noon and 150mg in the evening. I also take a
zanaflex
> (musle relaxent) everynight at bedtime (this has been the best
muscle
> relaxer i have found--i've had 2 back surgeries--so it helps with
that
> and just stiff joints and muscles in general, and it helps with
> sleeping.) Then for as needed pain medication i take lortab (which
> sometimes works and sometimes doesn't-it just depends on the
episode
> i'm having i guess.) I also have the tramadol as needed. One good
thing
> with the tramadol (depending on what your dosing is) you can also
take
> 2 extra strength tylenol with it and it makes it work even better
and
> the tramadol isn't a narcotic. Sometimes no matter what you take,
> NOTHING helps anyway!(those are my lay in my bed and not move
> days/nights:))Hope that this is helpful! good luck! Kristina
> > Hi Everyone,
> >
> > Those of you that are on pain medication, could you tell me what
you
> > are taking.  Are you having in problems with it or had any
problems
> > with it.
> >
> > Thanks so much.
> >
> > Sue
> >
>

#24672

From: "kruiz510" <kruiz510@...>
Date: Thu Feb 28, 2008 9:36 pm
Subject: Re: Pain Mediciation

kruiz510

Offline

--- In Dercums_Disease@yahoogroups.com, "Sue Ann Farasy Mueller"
<megs84@...> wrote:
>For everyday i take, plaquenil 2xdaily (this helped my flares for the
first little while really well--its normally used for lupus), i take
lyrica 75 mg at noon and 150mg in the evening. I also take a zanaflex
(musle relaxent) everynight at bedtime (this has been the best muscle
relaxer i have found--i've had 2 back surgeries--so it helps with that
and just stiff joints and muscles in general, and it helps with
sleeping.) Then for as needed pain medication i take lortab (which
sometimes works and sometimes doesn't-it just depends on the episode
i'm having i guess.) I also have the tramadol as needed. One good thing
with the tramadol (depending on what your dosing is) you can also take
2 extra strength tylenol with it and it makes it work even better and
the tramadol isn't a narcotic. Sometimes no matter what you take,
NOTHING helps anyway!(those are my lay in my bed and not move
days/nights:))Hope that this is helpful! good luck! Kristina
> Hi Everyone,
>
> Those of you that are on pain medication, could you tell me what you
> are taking.  Are you having in problems with it or had any problems
> with it.
>
> Thanks so much.
>
> Sue
>

#24671

From: Sue Ann Farasy Mueller <megs84@...>
Date: Thu Feb 28, 2008 3:44 pm
Subject: Re: Pain Mediciation

suzie16202000

Offline

Hi Joan,

Thanks so much for your reply. Hydrocodone makes me have horrible nightmares so I guess that one is out for me. ha.

Sue

yankeestovall@... wrote:

Hi Sue, I take Neurontin, hydrocodone and a muscle relaxant. I also use the Lidocaine patches. But I don't always have to use all of them. Yesterday was one of those days where I had to use them all. The Hydrocodone use to cause itching but after a while it didn't cause that effect any more. codeine used to make me see very large spiders all over but that too lapsed after awhile, Joan

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

Live Well,

Laugh Often,

Love Much.

Italian Proverb

Only two defining forces have ever offered to die for you, Jesus Christ and the American G. I.
One died for your soul, the other for your freedom.

#24670

From: "CalleKitten" <callekitten@...>
Date: Thu Feb 28, 2008 9:04 pm
Subject: Re: A few more questions:)

calle_kitten

Offline

Re: A few more questions:)

Posted by: "Sue Ann Farasy Mueller" megs84@... suzie16202000

Wed Feb 27, 2008 6:33 pm (PST)

Hi,

Did you have any side affects from the lycria?

Hi Sue, so far the only side affect I can see is that am hungrier than I used to be. But thats not saying much because I was never ever hungry. I ate out of stress.

No side affects. So far. On 75 3x of Lycria.

calle//carin in AZ

#24669

From: Karen Krzeminski <kamperk06@...>
Date: Thu Feb 28, 2008 6:09 pm
Subject: RE: Pain Mediciation

aqua12062

Offline

I've been on a lot of different meds but since my last surgery (13 angio's removed from all over my body inc: back and hips) I've still got these little things (some getting HUGE) hurting and stinging and "pins and needles"...Just miserable BUT...I found a new doctor that has diagnosed me with Dercum's. I'm on Tramadol! Also called Ultram. Dr. Dave gave me time released but I got sick and threw up with those. I'm on 50mg of the regular pills. Take two every four to six hours...blah, blah, blah. I'm getting the mg's increased tomorrow if it's possible but this pill is doing me some good! I'm not getting the severe pain and I'm not getting those "pins and needles into sweat" thing I usually ALWAYS do.
I've been on Elavil ever since my car accident (Traumatic Brain Injury) so I don't know it's effect on the Dercums other than I can sleep really well. One of my pain pills and 3 of my 25mg Elavil and I'm out for the night. I'm also on Lasix for swelling. I retain water and swell up severely for some unknown reason!
I'm able to work part time (7AM-12Noon) Mon-Fri and go to school (Almost have my bachelor degree)..Mon-Thur....

I'm just doing what I can to get by and get class and college over with so I can do what I've always wanted to do...work with juvies in system. Probation or pre-sentence investigations, in Arizona.
Hope you're all having a good day!
Karen K..

To: Dercums_Disease@yahoogroups.com
From: megs84@...
Date: Wed, 27 Feb 2008 20:47:50 +0000
Subject: [Dercums_Disease] Pain Mediciation

Hi Everyone,

Those of you that are on pain medication, could you tell me what you
are taking. Are you having in problems with it or had any problems
with it.

Thanks so much.

Sue

Climb to the top of the charts!�Play the word scramble challenge with star power. Play now!

#24668

From: Pamela Harrison <ozziespamela@...>
Date: Thu Feb 28, 2008 5:54 pm
Subject: hillsdale.net

ozziespamela

Offline

This hillsdale.net info has been sent to you by Pamela Harrison <ozziespamela@ yahoo.com>.

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#24667

From: Pamela Harrison <ozziespamela@...>
Date: Thu Feb 28, 2008 4:39 pm
Subject: Re: Re: New Member

ozziespamela

Offline

Hi Jo and Julie,
Welcome! I have had a very large tumor over and around my lumbar spine for at least 25 years. I would not even consider having it removed now because I'm afraid I'd wind up paralyzed. It used to hurt alot worse than it does now. I think it finally settled in and I am much heavier than I was back when. Maybe the extra fat around it has a cushioning effect.
Yes, my breast are full of lumps too. I know I shouldn't, but I avoid mammograms because they are so painful for me. I had a lump removed from my breast years and years ago, but that was long before I realized I had DD.
Pamela

----- Original Message ----
From: klartymarty <klartymarty@...>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, February 28, 2008 5:47:21 AM
Subject: [Dercums_Disease] Re: New Member

--- In Dercums_Disease@ yahoogroups. com, "juliezs" <juliezs@... > wrote:
>Hello Julie
I'm Jo
A new member like you . I have a large one on my lower spine It has
formed in to a long 6ins *2ins sausage also causing back ache Please
let us know how you get on Good luck
> Hi,
> My name is Julie and I'm pretty sure I have Dercum's.
> I've been lurking on this list for a while and thought I'd
> finally introduce myself.
> I got my first lipomas right after my first child was born, and
> I keep getting more and more. I've had four surgeries to have
> them taken out. Once in the doctors office, and three times in a
> surgery outpatient/center. I had a great experience with the first
> time in the doctors office, he used stitches. The other times,
> they used surgical tape to close up the wound, and my skin reacted
> horribly, I have near keloid scars on each of the incision sites.
> I haven't had any of the lipomas grow back, although there are new
> ones growing near most of the removal sites.
>
> I'm writing mainly because I now have a large lipoma on my spine,
> near my lower back, and it is getting so big it is causing a
constant
> backache. I know I need to get it taken out and I'm curious to
> know if anyone has undergone a lipoma removal right on their
spine???
>
> Also, I had to have several lumps removed from my breast and there
are
> many more left to remove, my surgeon said he had never seen a mass
> like that come out of a breast (angiolipoma) . Anyone else have them
> in their breast tissue??
>
> Well, I just want to say to the group, thanks for being here, and
> listening and sharing information, and I look forward to "talking"
> with you in the future.
>
> Julie
>

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

#24666

From: "klartymarty" <klartymarty@...>
Date: Thu Feb 28, 2008 11:47 am
Subject: Re: New Member

klartymarty

Offline

--- In Dercums_Disease@yahoogroups.com, "juliezs" <juliezs@...> wrote:
>Hello Julie
I'm Jo
A new member like you . I have a large one on my lower spine It has
formed in to a long 6ins *2ins sausage also causing back ache Please
let us know how you get on Good luck
> Hi,
> My name is Julie and I'm pretty sure I have Dercum's.
> I've been lurking on this list for a while and thought  I'd
> finally introduce myself.
> I got my first lipomas right after my first child was born, and
> I keep getting more and more.  I've had four surgeries to have
> them taken out.  Once in the doctors office, and three times in a
> surgery outpatient/center.  I had a great experience with the first
> time in the doctors office, he used stitches.  The other times,
> they used surgical tape to close up the wound, and my skin reacted
> horribly, I have near keloid scars on each of the incision sites.
> I haven't had any of the lipomas grow back, although there are new
> ones growing near most of the removal sites.
>
> I'm writing mainly because I now have a large lipoma on my spine,
> near my lower back, and it is getting so big it is causing a
constant
> backache.  I know I need to get it taken out and I'm curious to
> know if anyone has undergone a lipoma removal right on their
spine???
>
> Also, I had to have several lumps removed from my breast and there
are
> many more left to remove, my surgeon said he had never seen a mass
> like that come out of a breast (angiolipoma).  Anyone else have them
> in their breast tissue??
>
> Well, I just want to say to the group, thanks for being here, and
> listening and sharing information, and I look forward to "talking"
> with you in the future.
>
> Julie
>

#24665

From: yankeestovall@...
Date: Thu Feb 28, 2008 7:30 am
Subject: Re: Re: Think i gotta have surgery

brunerjoan

Offline

Hi Calle, I am so sorry for your pain. I can't imagine having that many surgeries. I hope there is something they can do to give you some relief. You can have some of my spoons today, Joan

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

#24664

From: yankeestovall@...
Date: Thu Feb 28, 2008 7:27 am
Subject: Re: Pain Mediciation

brunerjoan

Offline

Hi Sue, I take Neurontin, hydrocodone and a muscle relaxant. I also use the Lidocaine patches. But I don't always have to use all of them. Yesterday was one of those days where I had to use them all. The Hydrocodone use to cause itching but after a while it didn't cause that effect any more. codeine used to make me see very large spiders all over but that too lapsed after awhile, Joan

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

#24663

From: "Sue Ann Farasy Mueller" <megs84@...>
Date: Wed Feb 27, 2008 8:47 pm
Subject: Pain Mediciation

suzie16202000

Offline

Hi Everyone,

Those of you that are on pain medication, could you tell me what you
are taking.  Are you having in problems with it or had any problems
with it.

Thanks so much.

Sue

#24662

From: "klartymarty" <klartymarty@...>
Date: Wed Feb 27, 2008 7:43 pm
Subject: New Member

klartymarty

Offline

Hello Everyone

Just signing in. A little about me I am female,English, 62years young
and have had Familial lipomas since I was 19 years old. About 12 years
ago they started to alter and grow. Well you all know the story. I have
had some removed and am now waiting to have them removed from my feet
and knees (they cause me some problems trying to work!! )Like you all I
have good days and really bad ones but hey I'm still here!!

#24661

From: "lori338" <lori_smith.1@...>
Date: Wed Feb 27, 2008 6:12 am
Subject: Re: Think i gotta have surgery

lori338

Offline

Howdy Calle!

Bless your sweet heart!  I just said a special prayer for you.
God bless you!

Love and Hugs,
Lori

-- In Dercums_Disease@yahoogroups.com, "calle_kitten"
<callekitten@...> wrote:
>
> Hey all, I was just sitting here tonite, had been on the computer
for
> a while, decided to get up and go to the bathroom, tried to
> straighten my leg, the one that i wrecked the knee on, and it froze
> somehow, and I could not move it and the pain was excruciating.  I
> mean I am on 20 mg of oxcoton with 5 mg oxy for breakthrough, and
> this pain was through the roof !!
>
> I had seen my doctor, who had said there was possibly a minor
surgery
> they could do to help stop this, but with the DD, we both decided
we
> would wait and see if it got worse.
>
> It just did.  I don't want to feel that again, I woke my poor
husband
> up screaming because I couldn't move my leg - the bone somehow
slips
> out and i dunno, its like its sticking me.  I don't think the bone
> ever really healed after my break in 04.
>
> I am so so so scared.  I have had 3 operations on this knee, and
the
> pain when I wake up is so bad.  So so bad.
>
> Im in a catch 22.  There are lots of little aliens surrounding my
> knee.
>
> Last time i was in this hospital i caught a "bacteria".  It put a
> hole in my leg 4 inches long and was going deep.   My body was in
> fact eating itself from the inside.
>
> It took a wound vac to heal it.
>
> Gosh dang i try to hard to be up and to take this DD on the chin.
> The aliens are everywhere everywhere.  The only places not invaded
> yet are my head and the bottoms of my feet.
>
> When I look  in the mirror sometimes i imagine a little ant head
> instead of my face.
>
> The munching in my ears came back yesterday.
>
> Im a mess.  Injured left leg, 14 surgeries only to have the same
> problem return only higher on the achilles.
>
> Right leg, broken, shattered knee in 04, broken ankle in 05, lots
of
> aliens and pain.
>
> Im gonna call tomorrow and try and get into to see my orthopedic
> surgeon and get this scheduled as fast as possible.
>
> OUCH OUCH OUCH
>
> well off to bed, where i won't sleep very well.  Hubby will come in
> in a little while and wake me up to play with the cat.
>
> The cat will wake me up as she comes to my side of the bed, and
> pushes me over so she can lay in the crook of my arm, with one paw
on
> my chest.
>
> Guess its not all bad.
>
> I sure am scared.
>
> Hugs
>
> Calle//Carin in AZ
>

#24660

From: Sue Ann Farasy Mueller <megs84@...>
Date: Tue Feb 26, 2008 5:01 pm
Subject: Re: Re:A few more questions:)

suzie16202000

Offline

Hi,

Did you have any side affects from the lycria?

Thanks,

Sue

CalleKitten <callekitten@...> wrote:

Prednesone: I would never take it again. It blew me up like the pillsberry doughboy!! I was so fat everywhere. It didnt help the pain either.

The lycria has been a lifesaver so far. The worst part of the dercum's for me had been a constant itching/or stinging feeling ALL the time. There was never any relief from it, even with all my pain meds.

The Lycria has helped that immensely, from day 1 i took it. I have increased to 75 mg 3 x a day which seems to be working for me.

Please note, I have other severe pain issues as well, so I am only relating the Lycria to the DD stinging/itching i mentioned above.

Now for my dad, who had been a smoker most of his life, he would have died about 30 years earlier (he died at 81) without the predisone. It helped him so much, but it had its side effects too. When he was at its highest dosages we all had to walk around on eggshells because it was so easy to hurt his feelings and make him cry.

So there you go. What helps some doesnt others. I haven't noticed any water retention or bloating with the lycria.

But hey, who would want ONE CHRONIC PAIN sufferer. This group would be mighty boring.

Find something to laugh about today.

Calle//Carin/ AZ

Live Well,

Laugh Often,

Love Much.

Italian Proverb

Only two defining forces have ever offered to die for you, Jesus Christ and the American G. I.
One died for your soul, the other for your freedom.

#24659

From: "Lisa L. Van Camp" <l2vc@...>
Date: Thu Feb 28, 2008 12:21 am
Subject: Re:Think i gotta have surgery

l2vc

Offline

Calle,

I've had both of my knees replaced (1999 & 2004) a total of 12 knee surgeries. Both times I had nicely asked my surgeon to "Remove any and all lipomas and their cousins anywhere in/around/near my knee plus a 5 inch diameter around my knee".

"Oh sure I will" as he rolls his eyes. Of course he didn't! That would make too much sense - worse yet - coming from a patient who knew thinks she has a clue about her own body - Ooh nooooo...I'm not bitter (insert the grinding of teeth here).

That S.O.B had the cajones to tell me after a month post surgery, "hey, we should have thought to remove those lipomas during your TKR - betcha they're part of the problem that's adding to the fiberous tissue growning in your knee and your inability to bend it".

Have him look you square in the eye and vow to do what he sez he's gonna do! Hell. have him sign a statement to at least remove the ones the both of you have mapped out.

Idea: At one of your pre surgical appt., bring in a washable marker - one that will show up on photographs. The 2 of you, together, mark the locations of the aliens by circling them - all the way around your knee with a 5 inch margin. Now take pictures. If you can, use a digital camera, so you know that you've taken a good, clear shots - all the way around. The day of surgery, bring them with you (make copies too) so the surgeon can remember the locations of the little buggars with the photos as a guide.

I'm hoping this will help as I have not tried it yet, but it seems to make sense?! I WILL do this when I meet with my general surgeon in 2 weeks to discuss removing 1 fatty/collagen covered lymph node in my upper thigh plus some 'omas around my left elbow in hopefully in a month .

Calle, depending on the condition of the joint and femur/tibia ends, getting a joint replacement is something to ask your surgeon about. The lipomas increase the joint destruction - plan and simple - it's what Type I, or the juxta-articular Dercum's motis operendi. Total Knee Replacements last longer and there are one designed to work with a woman anatomy and how our joints tend to be positioned.

Just out of curiosity, were your joints real flexible when you were growing up? That is part of osteoarthritis. When you over extend or go past the normal range of motion, over time you will break down the edge of the cartilage for that joint, which leads to OA. The over extension is
due to tendons and ligaments that are longer than they should be. Doctors are now just coming to the reality that exercise will not reduce the length of the tendons or ligaments. Don't let them tell you other wise. As far as I know, the only way to make the joint's range of motions normal, is to shorten both the tendons and ligament. I had this done on my left knee in 1975 at the ripe old age of 19. Back then I asked "don't I have the same problem in my other knee, hips, ankles? Was told "most likely" and it went no further.

OK - hope some of what I've tried to explain makes sense. I find it easier to think about what I want to discuss with the doctor when I'm not there, but usually forget my plan of attack, battle plans when I leave for the appointment - grumble, mumble Brain Farts \;*B

Disclaimer Alert: Please - research this info for yourself - google it - don't take my word for it - I'm NOT a DOCTOR!!!!

Lisa

Limbo is a game, not a state of existence. Support Research for Dercum's Disease http://www.dercumshope.org

Never miss a thing. Make Yahoo your homepage.

#24658

From: Fabric100@...
Date: Wed Feb 27, 2008 8:41 pm
Subject: Re: Think i gotta have surgery

fabric102

Offline

Carin--

OUCH!!! I'm so sorry about your knee. It sounds horrible! I, too, hope you can get in quickly. Remember to warn the surgeon and the hospital staff that you have a disease that compromises your immune system. They should use neutropenic precautions which means the staff will have to put on gloves & masks (at a minimum) when they care for you! My daughter caught an extra infection with every hospitalization until we insisted on these precautions. She hasn't had any 'extra' infections when these precautions are used. Some hospitals will also have the staff put on gowns. Your food will come from the cafeteria on disposable dishes and you won't be allowed fresh fruit or vegetables. You should also have a blood pressure cuff left in your room for your use only. When you are being transported between areas in the hospital, wear a mask. We will often also wipe down the bed rails, nurse call button and tray with the hospital provided antibiotic wipes. You will most likely get a private room! It is well worth the extra effort!!

Before the surgery, ask to speak to the hospital's pain management staff. They should be prepared for the level of pain already present with the disease and the after-surgical pain which is going to be worse than the 'normal' patient. Be certain they know the pain meds you are on daily as well as how long you have taken them. IV lidocaine does wonders to prevent that first onset of "I am going to dye!" pain. The anesthesiologist or pain management doctor can order it.

That's my 2 cents worth based on way TOO many hospitalizations in the last few years!

Best of luck and get some ice on that knee,
Anne

Supercharge your AIM. Get the AIM toolbar for your browser.

#24657

From: Pamela Harrison <ozziespamela@...>
Date: Wed Feb 27, 2008 4:50 pm
Subject: Re: Think i gotta have surgery

ozziespamela

Offline

Wow, I'm so sorry to hear that, Carin. Like you, I have had big problems with surgeries, including staph infections more than once. I try to avoid them too, but it sounds like you have no choice. Maybe you could get a pain pump during surgery so you won't hurt as much after?
Pamela

----- Original Message ----
From: calle_kitten <callekitten@...>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, February 26, 2008 11:41:30 PM
Subject: [Dercums_Disease] Think i gotta have surgery

Hey all, I was just sitting here tonite, had been on the computer for
a while, decided to get up and go to the bathroom, tried to
straighten my leg, the one that i wrecked the knee on, and it froze
somehow, and I could not move it and the pain was excruciating. I
mean I am on 20 mg of oxcoton with 5 mg oxy for breakthrough, and
this pain was through the roof !!

I had seen my doctor, who had said there was possibly a minor surgery
they could do to help stop this, but with the DD, we both decided we
would wait and see if it got worse.

It just did. I don't want to feel that again, I woke my poor husband
up screaming because I couldn't move my leg - the bone somehow slips
out and i dunno, its like its sticking me. I don't think the bone
ever really healed after my break in 04.

I am so so so scared. I have had 3 operations on this knee, and the
pain when I wake up is so bad. So so bad.

Im in a catch 22. There are lots of little aliens surrounding my
knee.

Last time i was in this hospital i caught a "bacteria". It put a
hole in my leg 4 inches long and was going deep. My body was in
fact eating itself from the inside.

It took a wound vac to heal it.

Gosh dang i try to hard to be up and to take this DD on the chin.
The aliens are everywhere everywhere. The only places not invaded
yet are my head and the bottoms of my feet.

When I look in the mirror sometimes i imagine a little ant head
instead of my face.

The munching in my ears came back yesterday.

Im a mess. Injured left leg, 14 surgeries only to have the same
problem return only higher on the achilles.

Right leg, broken, shattered knee in 04, broken ankle in 05, lots of
aliens and pain.

Im gonna call tomorrow and try and get into to see my orthopedic
surgeon and get this scheduled as fast as possible.

OUCH OUCH OUCH

well off to bed, where i won't sleep very well. Hubby will come in
in a little while and wake me up to play with the cat.

The cat will wake me up as she comes to my side of the bed, and
pushes me over so she can lay in the crook of my arm, with one paw on
my chest.

Guess its not all bad.

I sure am scared.

Hugs

Calle//Carin in AZ

Never miss a thing. Make Yahoo your homepage.

#24656

From: "Suzann Cheney" <scheney@...>
Date: Wed Feb 27, 2008 1:24 pm
Subject: RE: Think i gotta have surgery

suzanncheney

Offline

Hi Calle,

I'm hoping you can get the surgery scheduled soon.  Try not to worry
about it if you can.  Hopefully this time they will fix whatever is
wrong.

I'm sorry you are having such a rough time of it right now.  Hopefully,
the progression of this disease will soon slow down for you.  Remember
though that stress is a big part of the progression, so stay posting and
reading and ranting even, if it helps.

Take care and I wish you well - sending a few extra spoons your way -
while I'm in tremendous pain myself today - I think you need them more
than me!!


Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-5625
Tel: (315) 268-6738
Fax: (315) 268-7994


-----Original Message-----
From: Dercums_Disease@yahoogroups.com
[mailto:Dercums_Disease@yahoogroups.com] On Behalf Of calle_kitten
Sent: Wednesday, February 27, 2008 12:42 AM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] Think i gotta have surgery

Hey all, I was just sitting here tonite, had been on the computer for
a while, decided to get up and go to the bathroom, tried to
straighten my leg, the one that i wrecked the knee on, and it froze
somehow, and I could not move it and the pain was excruciating.  I
mean I am on 20 mg of oxcoton with 5 mg oxy for breakthrough, and
this pain was through the roof !!

I had seen my doctor, who had said there was possibly a minor surgery
they could do to help stop this, but with the DD, we both decided we
would wait and see if it got worse.

It just did.  I don't want to feel that again, I woke my poor husband
up screaming because I couldn't move my leg - the bone somehow slips
out and i dunno, its like its sticking me.  I don't think the bone
ever really healed after my break in 04.

I am so so so scared.  I have had 3 operations on this knee, and the
pain when I wake up is so bad.  So so bad.

Im in a catch 22.  There are lots of little aliens surrounding my
knee.

Last time i was in this hospital i caught a "bacteria".  It put a
hole in my leg 4 inches long and was going deep.   My body was in
fact eating itself from the inside.

It took a wound vac to heal it.

Gosh dang i try to hard to be up and to take this DD on the chin.
The aliens are everywhere everywhere.  The only places not invaded
yet are my head and the bottoms of my feet.

When I look  in the mirror sometimes i imagine a little ant head
instead of my face.

The munching in my ears came back yesterday.

Im a mess.  Injured left leg, 14 surgeries only to have the same
problem return only higher on the achilles.

Right leg, broken, shattered knee in 04, broken ankle in 05, lots of
aliens and pain.

Im gonna call tomorrow and try and get into to see my orthopedic
surgeon and get this scheduled as fast as possible.

OUCH OUCH OUCH

well off to bed, where i won't sleep very well.  Hubby will come in
in a little while and wake me up to play with the cat.

The cat will wake me up as she comes to my side of the bed, and
pushes me over so she can lay in the crook of my arm, with one paw on
my chest.

Guess its not all bad.

I sure am scared.

Hugs

Calle//Carin in AZ





Yahoo! Groups Links

#24655

From: "calle_kitten" <callekitten@...>
Date: Wed Feb 27, 2008 5:41 am
Subject: Think i gotta have surgery

calle_kitten

Offline

Hey all, I was just sitting here tonite, had been on the computer for
a while, decided to get up and go to the bathroom, tried to
straighten my leg, the one that i wrecked the knee on, and it froze
somehow, and I could not move it and the pain was excruciating.  I
mean I am on 20 mg of oxcoton with 5 mg oxy for breakthrough, and
this pain was through the roof !!

I had seen my doctor, who had said there was possibly a minor surgery
they could do to help stop this, but with the DD, we both decided we
would wait and see if it got worse.

It just did.  I don't want to feel that again, I woke my poor husband
up screaming because I couldn't move my leg - the bone somehow slips
out and i dunno, its like its sticking me.  I don't think the bone
ever really healed after my break in 04.

I am so so so scared.  I have had 3 operations on this knee, and the
pain when I wake up is so bad.  So so bad.

Im in a catch 22.  There are lots of little aliens surrounding my
knee.

Last time i was in this hospital i caught a "bacteria".  It put a
hole in my leg 4 inches long and was going deep.   My body was in
fact eating itself from the inside.

It took a wound vac to heal it.

Gosh dang i try to hard to be up and to take this DD on the chin.
The aliens are everywhere everywhere.  The only places not invaded
yet are my head and the bottoms of my feet.

When I look  in the mirror sometimes i imagine a little ant head
instead of my face.

The munching in my ears came back yesterday.

Im a mess.  Injured left leg, 14 surgeries only to have the same
problem return only higher on the achilles.

Right leg, broken, shattered knee in 04, broken ankle in 05, lots of
aliens and pain.

Im gonna call tomorrow and try and get into to see my orthopedic
surgeon and get this scheduled as fast as possible.

OUCH OUCH OUCH

well off to bed, where i won't sleep very well.  Hubby will come in
in a little while and wake me up to play with the cat.

The cat will wake me up as she comes to my side of the bed, and
pushes me over so she can lay in the crook of my arm, with one paw on
my chest.

Guess its not all bad.

I sure am scared.

Hugs

Calle//Carin in AZ

#24654

From: Fabric100@...
Date: Tue Feb 26, 2008 4:40 am
Subject: Re: A few more questions & lipo

fabric102

Offline

I would definitely recommend having the ultrasonic lipo or Vaser liposelection over old-fashioned 'normal' lipo. My daughter has had both and the Vaser liposelection was more successful and more accurate. Her surgeon is in Washington, DC and has treated a couple of Dercum's patients. We, too, fought to have insurance pay for it and were successful on appeal.

Many people need pain management afterwards to include IV pain killers. It is just something to be aware of.

Best of luck,
Anne

More new features than ever. Check out the new AOL Mail!

Reply | Forward | Messages in this Topic (1)

#24653

From: "CalleKitten" <callekitten@...>
Date: Mon Feb 25, 2008 11:55 pm
Subject: Re:A few more questions:)

calle_kitten

Offline

Prednesone: I would never take it again. It blew me up like the pillsberry doughboy!! I was so fat everywhere. It didnt help the pain either.

The lycria has been a lifesaver so far. The worst part of the dercum's for me had been a constant itching/or stinging feeling ALL the time. There was never any relief from it, even with all my pain meds.

The Lycria has helped that immensely, from day 1 i took it. I have increased to 75 mg 3 x a day which seems to be working for me.

Please note, I have other severe pain issues as well, so I am only relating the Lycria to the DD stinging/itching i mentioned above.

Now for my dad, who had been a smoker most of his life, he would have died about 30 years earlier (he died at 81) without the predisone. It helped him so much, but it had its side effects too. When he was at its highest dosages we all had to walk around on eggshells because it was so easy to hurt his feelings and make him cry.

So there you go. What helps some doesnt others. I haven't noticed any water retention or bloating with the lycria.

But hey, who would want ONE CHRONIC PAIN sufferer. This group would be mighty boring.

Find something to laugh about today.

Calle//Carin/ AZ

#24651

From: Myla Dutton <myla.dutton@...>
Date: Mon Feb 25, 2008 9:21 pm
Subject: Re: Re: A few more questions:)

myla.dutton

Offline

That is good news. Thank you for sharing.

Questions for anyone -

I fought my battle with my insurance company for a year and have won. They "got it" after the panel saw me in person - agreed that the lipo I needed was not cosmetic. They have agreed to fully cover removals of all DD tissue with lipo and have also agreed to remove the excess skin if I choose to do that. My growths are quite large and significant (around knees, upper arms, saddle bags,...) My first lipo is mid-March - the surgeon will do the arms and some around the knees. She has not faced DD before (of course).

Should I suggest that she consider the ultrasound lipo? From what you said it seems that it should be considered. What does she need to know to make that kind of decision?

Any other advice I could give her - I have heard that there is more bleeding in DD cases in surgery? Should we be more concerned about blood clots?

Should I ask her to speak with Dr. Herbst for any special advice? Or is there a surgeon who knows this stuff that she could speak to on the phone?

Also - does Dr. Herbst still want the DD tissues that are removed? I left a couple of voice mail messages for her and sent her an email but have not heard back. I would assume that she would make all of the arrangments to have the tissue packaged and sent to her.

Standing by and thanks for being there. It does make the DD a little easier to bear.

Myla

----- Original Message ----
From: brsshetlands <brsshetlands@...>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, February 25, 2008 5:24:07 AM
Subject: [Dercums_Disease] Re: A few more questions:)

Hi Kristina,
I just had my 2cd lipo (ultrasound) last Monday( along with several
excised areas w/ a repair/removal of a large painful seroma from a
previous abdominal tumor that was excised almost 3 years ago). The
first round of lipo was 2 years ago. I have had a good experience from
the lipo. Others have not. It isn't a cure and this DD is
strong-willed, and will return, not all of the diseased tissue will
be removed or at least not likely. I think much more of mine could
have been if the disease had not progressed so much before the lipo
was used. It lessens pain in the areas treated but the joint and bone
pain is not helped and in fact may seem increased because the focus of
the painful fat has decreased. I have greatly improved quality of
life, mobility and lessened pain but these things are for a time. I
had to fight a hard battle to get insurnace coverage but I did win the
battle on a corporate level. So it was worth the time to put together
my case in a very large way. The surgery is surgery, it's painful and
has risks. I'm 7 days post surgery and still in a recovery mode. I can
drive but my energy is reduced so I have to plan my day carefully. We
have a small farm and I've been doing the pony feedings at least once
a day for the past 4 days but any heavy chores or cooking big meals
that keep me on my feet is not in my days right now. My granddaughter
had her 1st birthday party yesterday and just riding in the car for
the 4 hours and sitting, smiling, talking took it all out of me...
Today will be a quieter day with lots of rest but then again having DD
is like that...too much one day takes 3-4 of extra rest to make up for
it.. I do not post often. If you would like to email me privately
about specific questions about the lipo, I would be glad to tell you
my experiences. ... but remember others have had different. These were
the right ones for "me". I do not take pain meds on a regular basis.
I've been more successful in reducing the DD pain by reducing DD
tissue but that is a constant battle and one that will not be as often
as I age...then the pain meds will have to be more of my day...but for
now since meds and me aren't not very compatable I prefer to fight the
pain using Lipo as one of the tools.
Have a great day!
Christie in Pa
>
> is regarding liposuction. ..I had tubesant (spelled wrong) liposuction
> on my saddle bags before i knew that i have DD and it has helped the
> pain there and i haven't had any major regrowth in that area. I have
> been considering getting lipo done on my legs and butt, but INSTEAD
> of tubesant i was going to have ULTRASONIC lipo...this is where they
> melt the fat first and then suck it out (the dermatologist says that
> this is better because it doesn't bother the tissue as much and where
> my fat is really fibrous it would come out a ton easier).Would you
> all still not recommend having it done? Thanks for your help! Kristina
>
no

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#24649

From: "Cynthia" <c_prentice2003@...>
Date: Mon Feb 25, 2008 10:05 am
Subject: Re: A few more questions:)

c_prentice2003

Offline

Hi there,

When you go to Disney - make sure you get there early to get an
electric cart for the day - it will make sure you enjoy the day as
much as everyone else !!! I don't know whther you can hire one in
advance - but that would be even better. I did it in Ocean World and
it was wonderful !!!

As for liposuction - there have been some really good effects for
some but also some very bad effects for others........ I would not
count on the DD tissue never coming back - so it depends on you
really what you choose to do.

There is at least one other person on Methotextrate it appears to
really help - but she also has other health issues. It might be worth
a try......

As for pain - have you tried a dedicated Pain Clinic rather than just
a doctor trying different things.... The guys who specialise in pain
really know which drugs can really help and unless you really are
allergic then they should be able to find something to help. I have
been on 24/7 Tramadol (in order to keep the level of drug stable in
my bloodstream) for 2 years now and it has changed my life. I take
the slow-release version and it does not take away all of the pain
but it has really helped.

You should also look at www.dercumshope.org and www.lipomaforum.com
for more information on Dercum's Disease.  There are loads of
personal stories which might help you.

Kind regards,

Cynthia

>
> Okay, so I am not going to take another prednisone pill ever!!(i'm
so
> glad i found all of you!!) I'm a little scared to say that i won't
> take prednisone, because like i said before that is the ONLY drug
> that has ever eased my all over body flares! (we are going to
> disneyland in march and i have to admit that i was going to start
> taking prednisone a couple of days before we went, but now i
> won't...i promise)Now you have to help me find something else so i
> will be able to walk in disneyland!!:)  Okay so here are my
> questions...I have tried other things like celebrex, ect. and it
does
> nothing for me...Have any of you ever been on Methotrexate? (this
is
> what the doctors think they will try next) If so, what do you think
> of it? Or is there anything else that anyone can think of that i
can
> use instead of the prednisone? (honestly, i can't make it through
the
> flare's on nothing..believe me...i have tried! Regular pain
> medication doesn't help at all either! Please help me if you have
any
> other alternatives!) Okay, another question, someone on here helped
> me find out that i have type 3 DD (thanks to you?) anyway my
question
> is regarding liposuction...I had tubesant (spelled wrong)
liposuction
> on my saddle bags before i knew that i have DD and it has helped
the
> pain there and i haven't had any major regrowth in that area. I
have
> been considering getting lipo done on my legs and butt, but INSTEAD
> of tubesant i was going to have ULTRASONIC lipo...this is where
they
> melt the fat first and then suck it out (the dermatologist says
that
> this is better because it doesn't bother the tissue as much and
where
> my fat is really fibrous it would come out a ton easier).Would you
> all still not recommend having it done? Thanks for your help!
Kristina
>

#24648

From: "kruiz510" <kruiz510@...>
Date: Mon Feb 25, 2008 3:02 am
Subject: A few more questions:)

kruiz510

Offline

Okay, so I am not going to take another prednisone pill ever!!(i'm so
glad i found all of you!!) I'm a little scared to say that i won't
take prednisone, because like i said before that is the ONLY drug
that has ever eased my all over body flares! (we are going to
disneyland in march and i have to admit that i was going to start
taking prednisone a couple of days before we went, but now i
won't...i promise)Now you have to help me find something else so i
will be able to walk in disneyland!!:)  Okay so here are my
questions...I have tried other things like celebrex, ect. and it does
nothing for me...Have any of you ever been on Methotrexate? (this is
what the doctors think they will try next) If so, what do you think
of it? Or is there anything else that anyone can think of that i can
use instead of the prednisone? (honestly, i can't make it through the
flare's on nothing..believe me...i have tried! Regular pain
medication doesn't help at all either! Please help me if you have any
other alternatives!) Okay, another question, someone on here helped
me find out that i have type 3 DD (thanks to you?) anyway my question
is regarding liposuction...I had tubesant (spelled wrong) liposuction
on my saddle bags before i knew that i have DD and it has helped the
pain there and i haven't had any major regrowth in that area. I have
been considering getting lipo done on my legs and butt, but INSTEAD
of tubesant i was going to have ULTRASONIC lipo...this is where they
melt the fat first and then suck it out (the dermatologist says that
this is better because it doesn't bother the tissue as much and where
my fat is really fibrous it would come out a ton easier).Would you
all still not recommend having it done? Thanks for your help! Kristina