Dercums_Disease : Messages : 27419-27448 of 29321

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)

#27447

From: Pamela Harrison <ozziespamela@...>
Date: Sun Mar 1, 2009 1:23 am
Subject: Re: Re: Re: New to the group

ozziespamela

Offline

Elaine wrote: I had provided my primary care with the info and he looked it up and read it. pain mostly inner thighs to knees. After looking up my history, the symptoms and Bx's I was Diagnosed with Dercum's.

HI Elaine,
You might want to google Lipedema as well. I have both DD and Lipedema, as well as secondary lymphedema (lipolymphedema.) The reason I say you shoukd look lipedema up is that it is very similar to DD, possibly even the same thing, but it tends to affect only the legs in it's early stages.
Pamela

#27446

From: echittick@...
Date: Fri Feb 27, 2009 11:30 pm
Subject: Re: Re: Re: New to the group

elaine.chittick

Offline

My name is Elaine it would be nice if they would make up brochures or pamphlets that would provide needed information about Dercum's to educate physicians about the disease. I googled my symptoms and Dercum's popped up I couldn't believe after 20+ years that I found something that explained my symptoms. I had been to every specialist. I didn't know if I had lipomas so I went to dermatologist to have some painful areas Bx. came back as lipomas. Helped some pain in particular area. before bx. I had provided my primary care with the info and he looked it up and read it. pain mostly inner thighs to knees. After looking up my history, the symptoms and Bx's I was Diagnosed with Dercum's. Dermatologist never heard of it.

Feb 26, 2009 07:00:37 PM, Dercums_Disease@yahoogroups.com wrote:

Yeah, the pain pills only work for so long. Then and only if your lucky to find a doc who will up your dosage, you'll get stronger ones that you'll soon get immune to also. The trick I've found in dealing with all this is a combination of things that will get you through. We all find our strengths to get us through but it's not just pills. For me, I use alot of deep breathing and meditation and warm water therapy pool exercises which is just gentle stretching, ice packs (and lots of them). The trick is to keep yourself as busy as possible. IF you have 4 things in your life that are taking up your day and pain is one of them, then PAIN becomes 1/4 of your day....and that's alot for anyone to handle. BUT...if you have 100 things to keep you busy in your day...pain then becomes 1/100 percent of a day for you to control. At least that's how I see it. Keeping busy and not letting the pain control YOU...is a big big part of it. Meditation, deep breathing exercises when the pain is intense and even guided imagery works wonders when your waiting for that pain pill to kick in again. I'm on stronger pills than you and it's getting harder and harder. It's work every day to control this but you have to be the one in control...otherwise...pain can take over and ruin your life. Don't forget to live Life!!! We hurt so much , here in this site, but having someone to talk to also helps when your in need, so feel free to let loose...cause we all have before.
Gentle hugs to you...

Pam

Have a Smiley Day...Love, Pam

From: snorky1112001 <snorky1112001@...>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, February 24, 2009 1:21:11 PM
Subject: [Dercums_Disease] Re: New to the group

(sorry for the multiple intro e-mails!)
(also if this is too detailed, please advise)

Hi Karen,

I live in a little farm town just outside of Kansas City. We are moving to Northern California (Sebastopol) in a few weeks which is the best combination of weather for family allergies and no/reduced winters and treatment.

It's a crazy time to move but I like swimming upstream sometimes :-)

I stopped working in 2006 to take care of my family's illnesses. (We drew some unlucky cards in there somewhere). Before that I worked on medical monitors (pulse oximeters). I can't imagine getting a job again but I will have to after we move, as it is so expensive to live there.

My doc has been pretty good, he is the best general doctor we've found here and he really cares about his patients. But the dermatologists! Not so good. I get migraines too, not sure how everyone here fares in that regard. I'm on statins, 7.5 hydrocodone (not so effective any longer) and triptans for the migraines.

I made the appointment in October, it's been a long 4 months! Am sure it will be worth the wait. If this isn't DD then that will be a suprise; will let you know.

I am really wondering how to manage pain. I feel my world is getting smaller right now although I hope that reverses soon.

Best,
-s

--- In Dercums_Disease@ yahoogroups. com, Karen Krzeminski wrote:
>
>
> Hi Seth,
>
>
>
> Where do you live? I'm in Lake Havasu City, AZ and moved here for the dry heat as the cold and humidity was too much for me in Ohio..But here recently I got to travel the 5 hours to San Diego as well and see Dr. Karen. She is so bright and so up-to-date on this disease. Simply amazing. Do you have a PCP with an openminded attitude? Seems to be the common thread here that people complain about but I've been fortuneate twice, one in Oh and one in AZ, that are working off the treatment plan and referrals from Dr Karen...
>
> Welcome to the exclusive group... I'm sorry about the pain...Do you still work or are you on disability now?
>
>
>
> Karen K., LHC, AZ
>
>
> Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org
>
>
>
>
>
>
> To: Dercums_Disease@ yahoogroups. com
> From: snorky1112001@ ...
> Date: Mon, 23 Feb 2009 20:42:20 +0000
> Subject: [Dercums_Disease] New to the group
>
>
>
>
>
> Hi,
>
> I'm 48, male, and have about 50 lipomas. Have been in denial for much of
> this process except the pain is getting ridiculous now so it's
> impossible to ignore DD any longer.
>
> Was diagnosed by my wife a few years ago, current doc concurs with
> diagnosis. Am adopted, no family history. Lots of steroids for asthma
> since 13. Get to see Dr. Herbst on the 3rd of March, am very happy about
> that!
>
> I'm amazed at everyone's sense of humor and willingness to keep trying
> things. I hope to join you in your quest. Thanks to everyone for the
> information and especially to Dr. Herbst for being a beacon of hope.
>
> Best to all,
> Seth
>
>
>
>
>
>
>
>
>
> ____________ _________ _________ _________ _________ _________ ________
> Windows Live™ Hotmail®:…more than just e-mail.
> http://windowslive. com/explore? ocid=TXT_ TAGLM_WL_ t2_hm_justgotbet ter_explore_ 022009
>

#27445

From: echittick@...
Date: Fri Feb 27, 2009 11:13 pm
Subject: Re: Re: Re: New to the group

elaine.chittick

Offline

Hi everyone, My name is Elaine I am finally relieved to have a Dx's that explains my pain but also the symptoms. I have suffered many years knowing something was wrong and didn't give up. Thank god I had MD's that never diagnosed me as a hyperchondriac they knew I was in pain but did not know why. I one day sat down in pain and wrote down my symptoms. I put down that deep aching pain and painful fatty tssue and Dercum's came up as I started to read it explained my pain to a T. I have tried to tell the doctors that my inner thigh to my knees hurt sometimes side over ribs, but mostly the thighs to knee. I have been going to pain management for several years. I had injections, PT,aquatic therapy,etc...Te neurotin I could not take morphine seems to work the best with IV dilaudid for flairs. I was recently diagnosed after everything was excluded and Bx positive for lipomas. I am not obese but there is a type that occurs without obesity. I have some removed that took away several areas of pain but I am on occasion having extreme flairs. this is a version of my story. Elaine

Feb 27, 2009 09:30:41 AM, Dercums_Disease@yahoogroups.com wrote:

Hi Pam,

Much agreement -- it is my experience that the non-pain-reliever things
approximately double the effectiveness of pain relievers. I cannot do
cold, ouch!, but warm baths and gentle massage are quite effective.

By themselves these non-pain-reliever things don't do much for me,
maybe 25% relief. But still positive.

IMHO there are strong regional differences in standards of care for
pain treatment, and the midwest is among the worst. For example a
dermatologist here wanted to inject my lipomas directly with lipo-dissolve
chemicals and not provide any pain relief for the 1-2 weeks he said it
would take for the fat to dissolve. No Thanks!

Best,
-s

--- On Thu, 2/26/09, pamela tweed <ptweedypie@...> wrote:

From: pamela tweed <ptweedypie@...>
Subject: Re: [Dercums_Disease] Re: New to the group
To: Dercums_Disease@yahoogroups.com
Date: Thursday, February 26, 2009, 7:00 PM

Yeah, the pain pills only work for so long. Then and only if your lucky to find a doc who will up your dosage, you'll get stronger ones that you'll soon get immune to also. The trick I've found in dealing with all this is a combination of things that will get you through. We all find our strengths to get us through but it's not just pills. For me, I use alot of deep breathing and meditation and warm water therapy pool exercises which is just gentle stretching, ice packs (and lots of them). The trick is to keep yourself as busy as possible. IF you have 4 things in your life that are taking up your day and pain is one of them, then PAIN becomes 1/4 of your day....and that's alot for anyone to handle. BUT...if you have 100 things to keep you busy in your day...pain then becomes 1/100 percent of a day for you to control. At least that's how I see it. Keeping busy and not letting the pain control YOU...is a big big part of it. Meditation, deep breathing exercises when the pain is intense and even guided imagery works wonders when your waiting for that pain pill to kick in again. I'm on stronger pills than you and it's getting harder and harder. It's work every day to control this but you have to be the one in control...otherwise ...pain can take over and ruin your life. Don't forget to live Life!!! We hurt so much , here in this site, but having someone to talk to also helps when your in need, so feel free to let loose...cause we all have before.

Gentle hugs to you...

Pam

Have a Smiley Day...Love, Pam

From: snorky1112001
To: Dercums_Disease@ yahoogroups. com
Sent: Tuesday, February 24, 2009 1:21:11 PM
Subject: [Dercums_Disease] Re: New to the group

(sorry for the multiple intro e-mails!)
(also if this is too detailed, please advise)

Hi Karen,

I live in a little farm town just outside of Kansas City. We are moving to Northern California (Sebastopol) in a few weeks which is the best combination of weather for family allergies and no/reduced winters and treatment.

It's a crazy time to move but I like swimming upstream sometimes :-)

I stopped working in 2006 to take care of my family's illnesses. (We drew some unlucky cards in there somewhere). Before that I worked on medical monitors (pulse oximeters). I can't imagine getting a job again but I will have to after we move, as it is so expensive to live there.

My doc has been pretty good, he is the best general doctor we've found here and he really cares about his patients. But the dermatologists! Not so good. I get migraines too, not sure how everyone here fares in that regard. I'm on statins, 7.5 hydrocodone (not so effective any longer) and triptans for the migraines.

I made the appointment in October, it's been a long 4 months! Am sure it will be worth the wait. If this isn't DD then that will be a suprise; will let you know.

I am really wondering how to manage pain. I feel my world is getting smaller right now although I hope that reverses soon.

Best,
-s

--- In Dercums_Disease@ yahoogroups. com, Karen Krzeminski wrote:
>
>
> Hi Seth,
>
>
>
> Where do you live? I'm in Lake Havasu City, AZ and moved here for the dry heat as the cold and humidity was too much for me in Ohio..But here recently I got to travel the 5 hours to San Diego as well and see Dr. Karen. She is so bright and so up-to-date on this disease. Simply amazing. Do you have a PCP with an openminded attitude? Seems to be the common thread here that people complain about but I've been fortuneate twice, one in Oh and one in AZ, that are working off the treatment plan and referrals from Dr Karen...
>
> Welcome to the exclusive group... I'm sorry about the pain...Do you still work or are you on disability now?
>
>
>
> Karen K., LHC, AZ
>
>
> Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org
>
>
>
>
>
>
> To: Dercums_Disease@ yahoogroups. com
> From: snorky1112001@ ...
> Date: Mon, 23 Feb 2009 20:42:20 +0000
> Subject: [Dercums_Disease] New to the group
>
>
>
>
>
> Hi,
>
> I'm 48, male, and have about 50 lipomas. Have been in denial for much of
> this process except the pain is getting ridiculous now so it's
> impossible to ignore DD any longer.
>
> Was diagnosed by my wife a few years ago, current doc concurs with
> diagnosis. Am adopted, no family history. Lots of steroids for asthma
> since 13. Get to see Dr. Herbst on the 3rd of March, am very happy about
> that!
>
> I'm amazed at everyone's sense of humor and willingness to keep trying
> things. I hope to join you in your quest. Thanks to everyone for the
> information and especially to Dr. Herbst for being a beacon of hope.
>
> Best to all,
> Seth
>
>
>
>
>
>
>
>
>
> ____________ _________ _________ _________ _________ _________ ________
> Windows Live™ Hotmail®:…more than just e-mail.
> http://windowslive. com/explore? ocid=TXT_ TAGLM_WL_ t2_hm_justgotbet ter_explore_ 022009
>

#27444

From: echittick@...
Date: Fri Feb 27, 2009 11:19 pm
Subject: Re: Re: Re: New to the group

elaine.chittick

Offline

Thank you for sharing I will respond but I have so many emails I need a chnce to review them. so I will come back. E

Feb 27, 2009 09:30:41 AM, Dercums_Disease@yahoogroups.com wrote:

Hi Pam,

Much agreement -- it is my experience that the non-pain-reliever things
approximately double the effectiveness of pain relievers. I cannot do
cold, ouch!, but warm baths and gentle massage are quite effective.

By themselves these non-pain-reliever things don't do much for me,
maybe 25% relief. But still positive.

IMHO there are strong regional differences in standards of care for
pain treatment, and the midwest is among the worst. For example a
dermatologist here wanted to inject my lipomas directly with lipo-dissolve
chemicals and not provide any pain relief for the 1-2 weeks he said it
would take for the fat to dissolve. No Thanks!

Best,
-s

--- On Thu, 2/26/09, pamela tweed <ptweedypie@...> wrote:

From: pamela tweed <ptweedypie@...>
Subject: Re: [Dercums_Disease] Re: New to the group
To: Dercums_Disease@yahoogroups.com
Date: Thursday, February 26, 2009, 7:00 PM

Yeah, the pain pills only work for so long. Then and only if your lucky to find a doc who will up your dosage, you'll get stronger ones that you'll soon get immune to also. The trick I've found in dealing with all this is a combination of things that will get you through. We all find our strengths to get us through but it's not just pills. For me, I use alot of deep breathing and meditation and warm water therapy pool exercises which is just gentle stretching, ice packs (and lots of them). The trick is to keep yourself as busy as possible. IF you have 4 things in your life that are taking up your day and pain is one of them, then PAIN becomes 1/4 of your day....and that's alot for anyone to handle. BUT...if you have 100 things to keep you busy in your day...pain then becomes 1/100 percent of a day for you to control. At least that's how I see it. Keeping busy and not letting the pain control YOU...is a big big part of it. Meditation, deep breathing exercises when the pain is intense and even guided imagery works wonders when your waiting for that pain pill to kick in again. I'm on stronger pills than you and it's getting harder and harder. It's work every day to control this but you have to be the one in control...otherwise ...pain can take over and ruin your life. Don't forget to live Life!!! We hurt so much , here in this site, but having someone to talk to also helps when your in need, so feel free to let loose...cause we all have before.

Gentle hugs to you...

Pam

Have a Smiley Day...Love, Pam

From: snorky1112001
To: Dercums_Disease@ yahoogroups. com
Sent: Tuesday, February 24, 2009 1:21:11 PM
Subject: [Dercums_Disease] Re: New to the group

(sorry for the multiple intro e-mails!)
(also if this is too detailed, please advise)

Hi Karen,

I live in a little farm town just outside of Kansas City. We are moving to Northern California (Sebastopol) in a few weeks which is the best combination of weather for family allergies and no/reduced winters and treatment.

It's a crazy time to move but I like swimming upstream sometimes :-)

I stopped working in 2006 to take care of my family's illnesses. (We drew some unlucky cards in there somewhere). Before that I worked on medical monitors (pulse oximeters). I can't imagine getting a job again but I will have to after we move, as it is so expensive to live there.

My doc has been pretty good, he is the best general doctor we've found here and he really cares about his patients. But the dermatologists! Not so good. I get migraines too, not sure how everyone here fares in that regard. I'm on statins, 7.5 hydrocodone (not so effective any longer) and triptans for the migraines.

I made the appointment in October, it's been a long 4 months! Am sure it will be worth the wait. If this isn't DD then that will be a suprise; will let you know.

I am really wondering how to manage pain. I feel my world is getting smaller right now although I hope that reverses soon.

Best,
-s

--- In Dercums_Disease@ yahoogroups. com, Karen Krzeminski wrote:
>
>
> Hi Seth,
>
>
>
> Where do you live? I'm in Lake Havasu City, AZ and moved here for the dry heat as the cold and humidity was too much for me in Ohio..But here recently I got to travel the 5 hours to San Diego as well and see Dr. Karen. She is so bright and so up-to-date on this disease. Simply amazing. Do you have a PCP with an openminded attitude? Seems to be the common thread here that people complain about but I've been fortuneate twice, one in Oh and one in AZ, that are working off the treatment plan and referrals from Dr Karen...
>
> Welcome to the exclusive group... I'm sorry about the pain...Do you still work or are you on disability now?
>
>
>
> Karen K., LHC, AZ
>
>
> Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org
>
>
>
>
>
>
> To: Dercums_Disease@ yahoogroups. com
> From: snorky1112001@ ...
> Date: Mon, 23 Feb 2009 20:42:20 +0000
> Subject: [Dercums_Disease] New to the group
>
>
>
>
>
> Hi,
>
> I'm 48, male, and have about 50 lipomas. Have been in denial for much of
> this process except the pain is getting ridiculous now so it's
> impossible to ignore DD any longer.
>
> Was diagnosed by my wife a few years ago, current doc concurs with
> diagnosis. Am adopted, no family history. Lots of steroids for asthma
> since 13. Get to see Dr. Herbst on the 3rd of March, am very happy about
> that!
>
> I'm amazed at everyone's sense of humor and willingness to keep trying
> things. I hope to join you in your quest. Thanks to everyone for the
> information and especially to Dr. Herbst for being a beacon of hope.
>
> Best to all,
> Seth
>
>
>
>
>
>
>
>
>
> ____________ _________ _________ _________ _________ _________ ________
> Windows Live™ Hotmail®:…more than just e-mail.
> http://windowslive. com/explore? ocid=TXT_ TAGLM_WL_ t2_hm_justgotbet ter_explore_ 022009
>

#27443

From: echittick@...
Date: Fri Feb 27, 2009 11:33 pm
Subject: Re: Meds: Neurontin

elaine.chittick

Offline

My name is Elaine it would be nice if they would make up brochures or pamphlets that would provide needed information about Dercum's to educate physicians about the disease. I googled my symptoms and Dercum's popped up I couldn't believe after 20+ years that I found something that explained my symptoms. I had been to every specialist. I didn't know if I had lipomas so I went to dermatologist to have some painful areas Bx. came back as lipomas. Helped some pain in particular area. before bx. I had provided my primary care with the info and he looked it up and read it. pain mostly inner thighs to knees. After looking up my history, the symptoms and Bx's I was Diagnosed with Dercum's. Dermatologist never heard of it. I cannot take neurontin, Morphine seems to work best on me

Feb 27, 2009 08:12:39 AM, Dercums_Disease@yahoogroups.com wrote:

>>>> Those of you that are on Neurontin, what dose are you on? I'm wondering if an increase is necessary for my pain. I'm on 400 mg. 3 x daily.

I am able to manage my pain now with 4 X 600mg daily. At night, if it has been a rough day, I might take another tablet. My doctor agrees that sleep is essential for combating the scourge, so he approved of my choice to add a little Neurontin to my cocktail at the end of the day. Now, with the amitriptyline I take in the evening and before bed, I don’t need that extra pill at night so much. The amitriptyline knocks me out pretty well. I wouldn’t say that it's effective against the pain; it does help me sleep. I also take a bunch of Tramadol throughout the day, so I am pretty well medicated. Discuss any changes with your doctor, and only mess with one variable at a time to find the right mix for you. I can get away with taking less of some things, but cannot go too far below the recommendations of my doctors. I know that I will likely be on these meds, or similar ones, so I don’t want to develop any tolerance for the things that help me with the bee stings and sudden jolts of pain (Neurontin) or the usual achiness and “bone pain” (Tramadol). Well, that’s my story and I am sticking to it. Later - William

#27442

From: "elaine.chittick" <echittick@...>
Date: Sat Feb 28, 2009 12:00 am
Subject: new member E re: dercums

elaine.chittick

Offline

Hi you can call me E. Even though I suffered many yrs, I was recently
Dx. with Dercum's. I wanted to Introduce myself. any suggestions would
be appreciated. Thank you E

Reply | Forward | Messages in this Topic (3)

#27441

From: echittick@...
Date: Sat Feb 28, 2009 8:17 pm
Subject: Re: Re: Bone Pain?

elaine.chittick

Offline

I have been recently diagnosed but have suffered 20+ yrs. I have tried NSAIDS, Tramadol, Neurontin(I can't take). What works best for me so far is morphine sulfate, breakthrough meds and Dilaudid for Flairs.

Sincerely,

E

Feb 28, 2009 12:42:49 AM, Dercums_Disease@yahoogroups.com wrote:

I finally gave in with agonizing pain and went back to the orthopedic surgeon for a shot of cortisone in my tennis elbow. Both elbows got shots in August he told me as he looked up the chart. But only the pain in the left came back so bad it seemed I would throw up at all times day and night. I discussed surgery with him. But that has to wait in line, April, I will get new larger gut tumors removed and hopefully the new upper arm which is the size of an olive. Now the left elbow is fine but I have a pain in the back of my right lung which I didn't feel before because the elbow was so overwhelming. I do not know if the pain is coming from in the lung or behind the lung pressing on it or something.Taking colchicine for gout twice a day tramadol 2-3 times a day (got scared by the pain doctor who warned me I could get seizures if I took too many) and allopurinal one time a day as well as hydrocodone, I will pick up tomorrow. I am very very tired and it is 1:30 in morning and can't sleep from pain. The pain in my arms and legs is worse at night because when I lay down, I can feel pressing on them, the hands and arms are sometimes numbs from sleeping on them and I get tingling and have to rub the hands to stop the discomfort. I am not sure if the pain in my arms and hands is bone or joints, seems like both.

Suzi

From: Rodney Bingham <nomadeclipse@...>
To: Dercums_Disease@yahoogroups.com
Sent: Friday, February 27, 2009 11:07:31 PM
Subject: Re: [Dercums_Disease] Bone Pain?

Will

Hey there! Do you know why our bones hurt so much? My hands and long bones in my legs have been feeling like they are being crushed in a vice for the last two months. Just thought you may know or remember seeing something.

Have as good a day as you can!

Rodney

--- On Fri, 2/27/09, Will - I - Am <waksmf@...> wrote:

From: Will - I - Am <waksmf@...>
Subject: [Dercums_Disease] Meds: Neurontin
To: Dercums_Disease@ yahoogroups. com
Date: Friday, February 27, 2009, 9:12 AM

>>>> Those of you that are on Neurontin, what dose are you on? I'm wondering if an increase is necessary for my pain. I'm on 400 mg. 3 x daily.

I am able to manage my pain now with 4 X 600mg daily. At night, if it has been a rough day, I might take another tablet. My doctor agrees that sleep is essential for combating the scourge, so he approved of my choice to add a little Neurontin to my cocktail at the end of the day. Now, with the amitriptyline I take in the evening and before bed, I don’t need that extra pill at night so much. The amitriptyline knocks me out pretty well. I wouldn’t say that it's effective against the pain; it does help me sleep. I also take a bunch of Tramadol throughout the day, so I am pretty well medicated. Discuss any changes with your doctor, and only mess with one variable at a time to find the right mix for you. I can get away with taking less of some things, but cannot go too far below the recommendations of my doctors. I know that I will likely be on these meds, or similar ones, so I don’t want to develop any tolerance for the things that help me with the bee stings and sudden jolts of pain (Neurontin) or the usual achiness and “bone pain” (Tramadol). Well, that’s my story and I am sticking to it. Later - William

#27440

From: echittick@...
Date: Sat Feb 28, 2009 8:46 pm
Subject: Re: Help Dr. Herbst

elaine.chittick

Offline

Karen Herbst
3350 La Jolla Village Drive
Mailcode 111G
San Diego, CA, 92161

Karen,

It is very important to continue Clinical Suppot regardind Dercum's Disease. I have suffered over 20 years with pain and extremely painful flairs. I wasn't diagnosed until recently and I am 43yrs old. I have not only suffered pain but have lost jobs do to this disease. I have always known something was wrong and went through every specialist and under went numerous tests. I one day when experiencing pain googled my main symptom not expecting to find anything. Dercum's Disease popped up. I researched extensively with the little info it provided. The first time in my life everything with this disease fit. I faxed it over to my pcp for him to research. I didn't even know if I had lipomas. I scheduled an appointment with dermatologist to bx two of the painful areas and pathology came back as lipomas. My pcp agreed after reveiwing the disease and my history that I did indeed have Dercum's. The reason for this story is if there were enough information and education for doctors I may have been diagnosed along time ago. Very little is known about this disease and whe have a long way to go to find it. We also need to find treatment s to help this extemely painful disease. We need people like Karen to help us, an to help find the answers to this disabling disease.

Please help Dercum's sufferers by continue the clinal support Karen Herbst is providing. It is most urgent for Dercum's Sufferers to recieve the information and knowledge of this extremely rare disease and how to treat it . Imagine if it was you or a family member who suffered from a painful disease if you know anything about it, enough is not known.

Help Karen to Help Us

A Dercum's sufferer

Elaine Chittick

Feb 26, 2009 06:45:40 PM, Dercums_Disease@yahoogroups.com wrote:

Hi Ladies: I am up for advancing to Associate Professor from Assistant
Professor and am going to ask a favor of all of you. If you feel
inclined, can you please write a letter in support of my clinical work
with you. These letters will be submitted with my application for
advancement.

Please send letters to:
Karen Herbst
3350 La Jolla Village Drive
Mailcode 111G
San Diego, CA, 92161

I really appreciate this!

Karen

Reply | Forward | Messages in this Topic (2)

#27439

From: sfrobink@...
Date: Sat Feb 28, 2009 7:44 pm
Subject: Re: Facial Palsy...

gamer_10101

Offline

Hi - I have Lyme and know that Bell's palsy can be one of the symptoms, when the C7 nerve root gets inflamed. Lyme is a relapsing disease, meaning it waxes and wanes, including with treatment, so it may be acting up again. If you want, you can go to www.lymenet.org, click on Support Groups on the lefthand side, then on Europe, and then you'll see a couple groups listed for the UK. Plus you could read on lymenet and post any questions for the Lyme patients there. I myself have Lyme and lipomas, the latter which have been responding nicely to the noni juice and grape seed extract protocol. - Robin

In a message dated 2/28/2009 10:56:40 A.M. Pacific Standard Time, skippy@... writes:

Hi everyone and to all those that know me from 'old' and to all those I've yet to meet.

For those that don't know me: I was dx with Dercum's and Chronic Fatigue about 5 years
ago. Have too many 'little suckers' (lipomas) to count which cause swelling in the area and
are painful to touch. Have 'muscular rheumatism' in thighs and arms and general weight
gain and I hurt like fury to 'touch' in nearly all of my body. All of which I have coped with
and had to 'accept' as there is nothing else that can be done. I have managed my pain
with dihydracodeine and Paracetamol for many years, but now my ankles are affected,
have two larger lipomas on the outside of ankle bones and now have diff walking, so am
now on gabapentin (neurotin in US I think, not sure?) cannot rotate one of my ankles at all
due to the pain, but GP a bit flummoxed at mo, so not sure where I will be going with all
of this. Phew, that's me.

Anyway, my Q is: Do any of you suffer from either bells palsy, droopy eyelid/s, or facial
palsy or weakness.

I started off many years ago with facial palsy and intermittent palsy on left side (they
thought I had Lyme's disease) but recovered and was left with intermittent bells palsy.
Over the years this has progressed to more facial palsy and weakness which happens when
my pain is high and I'm in a 'Dercum's Flare'

So I'm curious to see if anyone else here suffers with this. My GP can't see the connection
with the facial palsy and Dercum's and likewise he can't see the connection with the
lipomas on the ankles with the ankle pain and unable to rotate.

Anyway thought I'd post to say hi and ask my Q.

So I'm sitting here with a droopy eye and mouth (not quite dribbling yet!) wondering
whether I'm gonna need an eye patch if it doesn't clear up soon (don't want to frighten the
neighbours, lol!) A bit fuzzy on the Gabapentin, as not used to it yet, and with my boring
walking stick by my side, blanket on my lap (gotta keep those muscles warm) and you'd
think I'm 90yrs old but - hey I'm only 45 and sitting here thinking I may have to get a
wheelchair - I hate Dercum's!!!!!!

So, if I do have to get a wheelchair, don't know how we are gonna manage that as a
family. Ok when the kids arene't around, but my son needs one, my daughter can't walk
far so do they do a triple one?! Or perphaps I can find an attachment to clip on so I can
push my son's in front whilst I zoom along!!!

I'ts my hubby I feel sorry for, sure as hell he didn't sign up for all of this when we wed
many years ago!! Bless, he just says don't worry, we'll cope, which I know we will and we
do joke about the situation, well if we haven't got our humour it would be a very dark
place!!

Rant over! I seem to have digressed a bit, sorry. I tend to ramble, so a warning for the
future, lol!!

P.s. Have a another quick Q for those in the UK - Do you know any professional who
understands and treats Dercum's?

You're invited to Hollywood's biggest party: Get Oscars updates, red carpet pics and more at Moviefone.

#27438

From: "Leslie" <leslie_sndvl@...>
Date: Sat Feb 28, 2009 8:34 pm
Subject: Re: Facial Palsy...

momof6teens

Offline

Hey there, Sharon -
I'm so sorry you are suffering the additional symptoms...not just enough t0 have Dercums!!!! I have been a part of this group for some time, just don't stop in as often as I should; but saw your post and had to reply with a thought about the palsy:

Since Bells Palsy is one of those things that is sometimes dx'd by elimination, lyme disease as one of the possibilities. You tested negative for that, but there are so many other diseases that also present with palsy secondary to the main disease.

So...only speaking from my perspective and experiences, have had times when parts of my face/body have gone numb, weak, and non-reacting for a period of time. This has only happened severely to me (so far) a few times in the past 2 yrs.

At the times this occurred, I also had major brain fog/disorientation, speech difficulty, muscle spasms, tremors, etc.. Of course, scared this may be something other than Dercums, went to many specialists to rule out other possible diseases. Just thought you might want to look into the below...

My first thought (and some doctors, alike) was testing for Multiple Sclerosis. The brain/spinal MRI were negative for lesions, but also may be too early to completely rule this out, since MS clinical symptoms present this way.

Some viruses (i.e., HSV-1 and Epstein Barr) can also cause palsy (taken from the web): infections associated with demyelination of nerves. This nerve damage mechanism is different from the above mentioned - that oedema, swelling and compression of the nerve in the narrow bone canal is responsible for nerve damage. Demyelination may not even be directly caused by the virus, but by an unknown immune system response.

Just recently, I was also diagnosed with Fabry's Disease. This presents with much of what I thought might have been Dercums-related, with the exception of the lipomas. Fabry's is a lipid storage disorder that usually leads to strokes, heart attacks and renal failure. Many of the Fabry patients have had mini (to major) strokes at a relatively young age. Good thing with this one is that there is actually enzyme replacement therapy that can slow or stop progression of disease. I HAVE to wonder if there may be a relationship somehow, since they are both lipid diseases....

Alright, those are the ones I can think of that you might be able to research/ test for. Don't know if this helps you...

Here's to hoping the best for you!! Take good care,
Leslie :)

--- In Dercums_Disease@yahoogroups.com, "Sharon" <skippy@...> wrote:
>
> Hi everyone and to all those that know me from 'old' and to all those I've yet to meet.
>
> For those that don't know me: I was dx with Dercum's and Chronic Fatigue about 5 years
> ago. Have too many 'little suckers' (lipomas) to count which cause swelling in the area and
> are painful to touch. Have 'muscular rheumatism' in thighs and arms and general weight
> gain and I hurt like fury to 'touch' in nearly all of my body. All of which I have coped with
> and had to 'accept' as there is nothing else that can be done. I have managed my pain
> with dihydracodeine and Paracetamol for many years, but now my ankles are affected,
> have two larger lipomas on the outside of ankle bones and now have diff walking, so am
> now on gabapentin (neurotin in US I think, not sure?) cannot rotate one of my ankles at all
> due to the pain, but GP a bit flummoxed at mo, so not sure where I will be going with all
> of this. Phew, that's me.
>
> Anyway, my Q is: Do any of you suffer from either bells palsy, droopy eyelid/s, or facial
> palsy or weakness.
>
> I started off many years ago with facial palsy and intermittent palsy on left side (they
> thought I had Lyme's disease) but recovered and was left with intermittent bells palsy.
> Over the years this has progressed to more facial palsy and weakness which happens when
> my pain is high and I'm in a 'Dercum's Flare'
>
> So I'm curious to see if anyone else here suffers with this. My GP can't see the connection
> with the facial palsy and Dercum's and likewise he can't see the connection with the
> lipomas on the ankles with the ankle pain and unable to rotate.
>
> Anyway thought I'd post to say hi and ask my Q.
>
> So I'm sitting here with a droopy eye and mouth (not quite dribbling yet!) wondering
> whether I'm gonna need an eye patch if it doesn't clear up soon (don't want to frighten the
> neighbours, lol!) A bit fuzzy on the Gabapentin, as not used to it yet, and with my boring
> walking stick by my side, blanket on my lap (gotta keep those muscles warm) and you'd
> think I'm 90yrs old but - hey I'm only 45 and sitting here thinking I may have to get a
> wheelchair - I hate Dercum's!!!!!!
>
> So, if I do have to get a wheelchair, don't know how we are gonna manage that as a
> family. Ok when the kids arene't around, but my son needs one, my daughter can't walk
> far so do they do a triple one?! Or perphaps I can find an attachment to clip on so I can
> push my son's in front whilst I zoom along!!!
>
> I'ts my hubby I feel sorry for, sure as hell he didn't sign up for all of this when we wed
> many years ago!! Bless, he just says don't worry, we'll cope, which I know we will and we
> do joke about the situation, well if we haven't got our humour it would be a very dark
> place!!
>
> Rant over! I seem to have digressed a bit, sorry. I tend to ramble, so a warning for the
> future, lol!!
>
> P.s. Have a another quick Q for those in the UK - Do you know any professional who
> understands and treats Dercum's?
>

#27437

From: Sherry Fox <shefox908@...>
Date: Sat Feb 28, 2009 8:25 pm
Subject: Re: Facial Palsy...

shefox908

Offline

Hello Sharon,

Just a quick comment about the droopy eye lid. About 12 years ago I had upper eyelid surgery and it did not take! In fact the surgery actually made it worse. So I went to a different plastic and after I woke from surgery the doctor told me that the upper eye lid did not even hold the stitching that the other plastic had done.

We are different. Our skin and fat is just not normal.

Sherry

--- On Sat, 2/28/09, Sharon <skippy@...> wrote:

From: Sharon <skippy@...>
Subject: [Dercums_Disease] Facial Palsy...
To: Dercums_Disease@yahoogroups.com
Date: Saturday, February 28, 2009, 1:56 PM

Hi everyone and to all those that know me from 'old' and to all those I've yet to meet.

For those that don't know me: I was dx with Dercum's and Chronic Fatigue about 5 years
ago. Have too many 'little suckers' (lipomas) to count which cause swelling in the area and
are painful to touch. Have 'muscular rheumatism' in thighs and arms and general weight
gain and I hurt like fury to 'touch' in nearly all of my body. All of which I have coped with
and had to 'accept' as there is nothing else that can be done. I have managed my pain
with dihydracodeine and Paracetamol for many years, but now my ankles are affected,
have two larger lipomas on the outside of ankle bones and now have diff walking, so am
now on gabapentin (neurotin in US I think, not sure?) cannot rotate one of my ankles at all
due to the pain, but GP a bit flummoxed at mo, so not sure where I will be going with all
of this. Phew, that's me.

Anyway, my Q is: Do any of you suffer from either bells palsy, droopy eyelid/s, or facial
palsy or weakness.

I started off many years ago with facial palsy and intermittent palsy on left side (they
thought I had Lyme's disease) but recovered and was left with intermittent bells palsy.
Over the years this has progressed to more facial palsy and weakness which happens when
my pain is high and I'm in a 'Dercum's Flare'

So I'm curious to see if anyone else here suffers with this. My GP can't see the connection
with the facial palsy and Dercum's and likewise he can't see the connection with the
lipomas on the ankles with the ankle pain and unable to rotate.

Anyway thought I'd post to say hi and ask my Q.

So I'm sitting here with a droopy eye and mouth (not quite dribbling yet!) wondering
whether I'm gonna need an eye patch if it doesn't clear up soon (don't want to frighten the
neighbours, lol!) A bit fuzzy on the Gabapentin, as not used to it yet, and with my boring
walking stick by my side, blanket on my lap (gotta keep those muscles warm) and you'd
think I'm 90yrs old but - hey I'm only 45 and sitting here thinking I may have to get a
wheelchair - I hate Dercum's!!!! !!

So, if I do have to get a wheelchair, don't know how we are gonna manage that as a
family. Ok when the kids arene't around, but my son needs one, my daughter can't walk
far so do they do a triple one?! Or perphaps I can find an attachment to clip on so I can
push my son's in front whilst I zoom along!!!

I'ts my hubby I feel sorry for, sure as hell he didn't sign up for all of this when we wed
many years ago!! Bless, he just says don't worry, we'll cope, which I know we will and we
do joke about the situation, well if we haven't got our humour it would be a very dark
place!!

Rant over! I seem to have digressed a bit, sorry. I tend to ramble, so a warning for the
future, lol!!

P.s. Have a another quick Q for those in the UK - Do you know any professional who
understands and treats Dercum's?

#27436

From: "Sharon" <skippy@...>
Date: Sat Feb 28, 2009 6:56 pm
Subject: Facial Palsy...

skippyshaz

Offline

Hi everyone and to all those that know me from 'old' and to all those I've yet
to meet.

For those that don't know me:  I was dx with Dercum's and Chronic Fatigue about
5 years
ago. Have too many 'little suckers' (lipomas) to count which cause swelling in
the area and
are painful to touch. Have 'muscular rheumatism' in thighs and arms and general
weight
gain and I hurt like fury to 'touch' in nearly all of my body.  All of which I
have coped with
and had to 'accept' as there is nothing else that can be done.  I have managed
my pain
with dihydracodeine and Paracetamol for many years, but now my ankles are
affected,
have two larger lipomas on the outside of ankle bones and now have diff walking,
so am
now on gabapentin (neurotin in US I think, not sure?) cannot rotate one of my
ankles at all
due to the pain, but GP a bit flummoxed at mo, so not sure where I will be going
with all
of this. Phew, that's me.

Anyway, my Q is:  Do any of you suffer from either bells palsy, droopy eyelid/s,
or facial
palsy or weakness.

I started off many years ago with facial palsy and intermittent palsy  on left
side (they
thought I had Lyme's disease) but recovered and was left with intermittent bells
palsy.
Over the years this has progressed to more facial palsy and weakness which
happens when
my pain is high and I'm in a 'Dercum's Flare'

So I'm curious to see if anyone else here suffers with this.  My GP can't see
the connection
with the facial palsy and Dercum's and likewise he can't see the connection with
the
lipomas on the ankles with the ankle pain and unable to rotate.

Anyway thought I'd post to say hi and ask my Q.

So I'm sitting here with a droopy eye and mouth (not quite dribbling yet!)
wondering
whether I'm gonna need an eye patch if it doesn't clear up soon (don't want to
frighten the
neighbours, lol!) A bit fuzzy on the Gabapentin, as not used to it yet, and with
my boring
walking stick by my side, blanket on my lap (gotta keep those muscles warm) and
you'd
think I'm 90yrs old but - hey I'm only 45 and sitting here thinking I may have
to get a
wheelchair - I hate Dercum's!!!!!!

So, if I do have to get a wheelchair, don't know how we are gonna manage that as
a
family.  Ok when the kids arene't around, but my son needs one, my daughter
can't walk
far so do they do a triple one?!  Or perphaps I can find an attachment to clip
on so I can
push my son's in front whilst I zoom along!!!

I'ts my hubby I feel sorry for, sure as hell he didn't sign up for all of this
when we wed
many years ago!!  Bless, he just says don't worry, we'll cope, which I know we
will and we
do joke about the situation, well if we haven't got our humour it would be a
very dark
place!!

Rant over!  I seem to have digressed a bit, sorry.  I tend to ramble, so a
warning for the
future, lol!!

P.s.  Have a another quick Q for those in the UK - Do you know any professional
who
understands and treats Dercum's?

#27435

From: "Sharon" <skippy@...>
Date: Sat Feb 28, 2009 6:36 pm
Subject: Had similar prob..

skippyshaz

Offline

Hi Rod,

Just dropping by here and like you have been suffering from increased bone pain
and it
really is a 'killer' on top of everything else.

My probs are my ankles as can hardly walk, so finally hobbled to docs and we are
trying
new pain meds, Gabapentin (I think this is Neurotin in US, but not sure).  I
also take
dihydracodeine and paracetamol 4 times a day (two each) as I want to try and
still be able
to drive.  We are starting on 200mg of Gabapentin with the other meds twice a
day and it
is starting to work a bit, but I think the side effect is giving me a bit of a
'fuzzy' head, so
will have to see how it goes.  I certainly wouldn't want to drive anywhere at
the moment,
but perhaps it's because I need to 'get used' to the new drug - we'll see!

I really empathise with you on this pain.  I can normally cope if I can keep my
pain score to
about 5 or 7, but when it gets over 7 I'm really stuffed.  I could go on
morphine, have done
in the past, but it knocked me out, so don't wanna go there.  I am hoping it's
'just a flare'
and not a new phase of this dreaded dis-ease!  If it ends up being a new phase,
then I
guess I'll have to try and cope and get a wheelchair! (the thought fills me with
dread).

I've gotten used to 'getting fat' and being invaded by hundres of 'little
suckers' all over my
body (too many too count) but this increase in pain is the last straw!

Anyway, here's hoping you can get to be 'relatively' pain free soon.

Gentle hugs
Skip

Reply | Forward | Messages in this Topic (1)

#27434

From: "CalleKitten" <callekitten@...>
Date: Sat Feb 28, 2009 5:26 pm
Subject: Re: Bone Pain?

calle_kitten

Offline

Rodney My massage therapist says its because those areas are skinnier than most others, so the pressure there is more, so the pain is more. Mine are very sore there too. About 1/3 of the way down the knee, to the ankle.

Do you have lipedema too ?

Callle - just my humble opinion

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

From: Rodney Bingham

To: Dercums_Disease@yahoogroups.com

Sent: Friday, February 27, 2009 9:07 PM

Subject: Re: [Dercums_Disease] Bone Pain?

Will

Hey there! Do you know why our bones hurt so much? My hands and long bones in my legs have been feeling like they are being crushed in a vice for the last two months. Just thought you may know or remember seeing something.

Have as good a day as you can!

Rodney

--- On Fri, 2/27/09, Will - I - Am <waksmf@...> wrote:

From: Will - I - Am <waksmf@...>
Subject: [Dercums_Disease] Meds: Neurontin
To: Dercums_Disease@yahoogroups.com
Date: Friday, February 27, 2009, 9:12 AM

>>>> Those of you that are on Neurontin, what dose are you on? I'm wondering if an increase is necessary for my pain. I'm on 400 mg. 3 x daily.

I am able to manage my pain now with 4 X 600mg daily. At night, if it has been a rough day, I might take another tablet. My doctor agrees that sleep is essential for combating the scourge, so he approved of my choice to add a little Neurontin to my cocktail at the end of the day. Now, with the amitriptyline I take in the evening and before bed, I don’t need that extra pill at night so much. The amitriptyline knocks me out pretty well. I wouldn’t say that it's effective against the pain; it does help me sleep. I also take a bunch of Tramadol throughout the day, so I am pretty well medicated. Discuss any changes with your doctor, and only mess with one variable at a time to find the right mix for you. I can get away with taking less of some things, but cannot go too far below the recommendations of my doctors. I know that I will likely be on these meds, or similar ones, so I don’t want to develop any tolerance for the things that help me with the bee stings and sudden jolts of pain (Neurontin) or the usual achiness and “bone pain” (Tramadol). Well, that’s my story and I am sticking to it. Later - William

#27433

From: Karen Krzeminski <kamperk06@...>
Date: Sat Feb 28, 2009 4:20 pm
Subject: RE: Meds: Neurontin

aqua12062

Offline

>>>> Those of you that are on Neurontin, what dose are you on? I'm wondering if an increase
is necessary for my pain. I'm on 400 mg. 3 x daily.

I am also on 400mg 3x a day and wondering if I need an increase. I see the rheumotolgist
Monday for pain control and wondering if he will have a better plan...
Karen K...

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

Windows Live� Groups: Create an online spot for your favorite groups to meet. Check it out.

#27432

From: "jzanker" <jzanker@...>
Date: Sat Feb 28, 2009 2:50 pm
Subject: whos from potsdam ny

jodith38

Offline

Hi a couple years ago i talked to someone on here from potsdam ny, and they were telling me about a doctor they were seeing just wondreing if your still here or not and who the doctor was ...my condition as gotton worse ,and im desperate for help from someone.

jodi zanker

ogdensburg ny

Reply | Forward | Messages in this Topic (1)

#27431

From: Suzi More <suzimore92@...>
Date: Sat Feb 28, 2009 6:42 am
Subject: Re: Bone Pain?

suzisblue

Offline

I finally gave in with agonizing pain and went back to the orthopedic surgeon for a shot of cortisone in my tennis elbow. Both elbows got shots in August he told me as he looked up the chart. But only the pain in the left came back so bad it seemed I would throw up at all times day and night. I discussed surgery with him. But that has to wait in line, April, I will get new larger gut tumors removed and hopefully the new upper arm which is the size of an olive. Now the left elbow is fine but I have a pain in the back of my right lung which I didn't feel before because the elbow was so overwhelming. I do not know if the pain is coming from in the lung or behind the lung pressing on it or something.Taking colchicine for gout twice a day tramadol 2-3 times a day (got scared by the pain doctor who warned me I could get seizures if I took too many) and allopurinal one time a day as well as hydrocodone, I will pick up tomorrow. I am very very tired and it is 1:30 in morning and can't sleep from pain. The pain in my arms and legs is worse at night because when I lay down, I can feel pressing on them, the hands and arms are sometimes numbs from sleeping on them and I get tingling and have to rub the hands to stop the discomfort. I am not sure if the pain in my arms and hands is bone or joints, seems like both.

Suzi

From: Rodney Bingham <nomadeclipse@...>
To: Dercums_Disease@yahoogroups.com
Sent: Friday, February 27, 2009 11:07:31 PM
Subject: Re: [Dercums_Disease] Bone Pain?

Will

Hey there! Do you know why our bones hurt so much? My hands and long bones in my legs have been feeling like they are being crushed in a vice for the last two months. Just thought you may know or remember seeing something.

Have as good a day as you can!

Rodney

--- On Fri, 2/27/09, Will - I - Am <waksmf@...> wrote:

From: Will - I - Am <waksmf@...>
Subject: [Dercums_Disease] Meds: Neurontin
To: Dercums_Disease@ yahoogroups. com
Date: Friday, February 27, 2009, 9:12 AM

>>>> Those of you that are on Neurontin, what dose are you on? I'm wondering if an increase is necessary for my pain. I'm on 400 mg. 3 x daily.

I am able to manage my pain now with 4 X 600mg daily. At night, if it has been a rough day, I might take another tablet. My doctor agrees that sleep is essential for combating the scourge, so he approved of my choice to add a little Neurontin to my cocktail at the end of the day. Now, with the amitriptyline I take in the evening and before bed, I don’t need that extra pill at night so much. The amitriptyline knocks me out pretty well. I wouldn’t say that it's effective against the pain; it does help me sleep. I also take a bunch of Tramadol throughout the day, so I am pretty well medicated. Discuss any changes with your doctor, and only mess with one variable at a time to find the right mix for you. I can get away with taking less of some things, but cannot go too far below the recommendations of my doctors. I know that I will likely be on these meds, or similar ones, so I don’t want to develop any tolerance for the things that help me with the bee stings and sudden jolts of pain (Neurontin) or the usual achiness and “bone pain” (Tramadol). Well, that’s my story and I am sticking to it. Later - William

#27430

From: Rodney Bingham <nomadeclipse@...>
Date: Sat Feb 28, 2009 4:07 am
Subject: Re: Bone Pain?

nomadeclipse

Offline

Will

Have as good a day as you can!

Rodney

--- On Fri, 2/27/09, Will - I - Am <waksmf@...> wrote:

From: Will - I - Am <waksmf@...>
Subject: [Dercums_Disease] Meds: Neurontin
To: Dercums_Disease@yahoogroups.com
Date: Friday, February 27, 2009, 9:12 AM

>>>> Those of you that are on Neurontin, what dose are you on? I'm wondering if an increase is necessary for my pain. I'm on 400 mg. 3 x daily.

I am able to manage my pain now with 4 X 600mg daily. At night, if it has been a rough day, I might take another tablet. My doctor agrees that sleep is essential for combating the scourge, so he approved of my choice to add a little Neurontin to my cocktail at the end of the day. Now, with the amitriptyline I take in the evening and before bed, I don’t need that extra pill at night so much. The amitriptyline knocks me out pretty well. I wouldn’t say that it's effective against the pain; it does help me sleep. I also take a bunch of Tramadol throughout the day, so I am pretty well medicated. Discuss any changes with your doctor, and only mess with one variable at a time to find the right mix for you. I can get away with taking less of some things, but cannot go too far below the recommendations of my doctors. I know that I will likely be on these meds, or similar ones, so I don’t want to develop any tolerance for the things that help me with the bee stings and sudden jolts of pain (Neurontin) or the usual achiness and “bone pain” (Tramadol). Well, that’s my story and I am sticking to it. Later - William

#27429

From: "placidcharmer" <placidcharmer@...>
Date: Fri Feb 27, 2009 4:11 pm
Subject: Re: Meds: Neurontin

placidcharmer

Offline

I take 800 mgs, 1 in the morning and 2 at night.  I also take 350 mgs
soma with it 3 times a day.  This really helps with the painful
ribcage and hip areas.  I take 1 50mg trazedone at night to help me
stay asleep.  I take this cocktail at night and it seems to be pretty
effective.


--- In Dercums_Disease@yahoogroups.com, Ben <Ben.Rossington@...>
wrote:
>
> I am on 600mg 3x a day. My doctor had me on amytriptaline at
night,
> but he has weaned me off of it. Kinda miss it- I thought it helped
me
> sleep also. I am also on lovastatin at bedtime.
>
> I also have cut huge amounts of high fructose corn syrup as much
as
> possible. That helped a lot.
>
> Just got a work from home job with HSN- helps my stress level quite
a
> bit.
>
> I'll be gone for the weekend, catch up with y'all this Monday.
>
> Big gentle hugs,
> Benjamin
>
> Sent from my iPod Touch
>
> On Feb 27, 2009, at 9:12 AM, "Will - I - Am" <waksmf@...> wrote:
>
> > >>>> Those of you that are on Neurontin, what dose are you on?
I'm
> > wondering if an increase is necessary for my pain. I'm on 400 mg.
3
> > x daily.
> >
> >
> > I am able to manage my pain now with 4 X 600mg daily.  At night,
if
> > it has been a rough day, I might take another tablet.  My doctor
> > agrees that sleep is essential for combating the scourge, so he
> > approved of my choice to add a little Neurontin to my cocktail
at
> > the end of the day.  Now, with the amitriptyline I take in the
> > evening and before bed, I don’t need that extra pill at night
so muc
> > h.  The amitriptyline knocks me out pretty well.  I wouldn’t
say tha
> > t it's effective against the pain; it does help me sleep.  I also
ta
> > ke a bunch of Tramadol throughout the day, so I am pretty well
medic
> > ated.  Discuss any changes with your doctor, and only mess with
one
> > variable at a time to find the right mix for you.  I can get away
wi
> > th taking less of some things, but cannot go too far below the
recom
> > mendations of my doctors.  I know that I will likely be on these
med
> > s, or similar ones, so I don’t want to develop any tolerance
for the
> >  things that help me with the bee stings and sudden jolts of pain
(N
> > eurontin) or the usual achiness and “bone pain” (Tramadol).
> > Well, that’s my story and I am sticking to it.  Later - William
> >
> >
> >
> >
>

#27428

From: Seth <snorky1112001@...>
Date: Fri Feb 27, 2009 3:30 pm
Subject: Re: Re: New to the group

snorky1112001

Offline

Hi Pam,

Much agreement -- it is my experience that the non-pain-reliever things
approximately double the effectiveness of pain relievers. I cannot do
cold, ouch!, but warm baths and gentle massage are quite effective.

By themselves these non-pain-reliever things don't do much for me,
maybe 25% relief. But still positive.

IMHO there are strong regional differences in standards of care for
pain treatment, and the midwest is among the worst. For example a
dermatologist here wanted to inject my lipomas directly with lipo-dissolve
chemicals and not provide any pain relief for the 1-2 weeks he said it
would take for the fat to dissolve. No Thanks!

Best,
-s

--- On Thu, 2/26/09, pamela tweed <ptweedypie@...> wrote:

From: pamela tweed <ptweedypie@...>
Subject: Re: [Dercums_Disease] Re: New to the group
To: Dercums_Disease@yahoogroups.com
Date: Thursday, February 26, 2009, 7:00 PM

Yeah, the pain pills only work for so long. Then and only if your lucky to find a doc who will up your dosage, you'll get stronger ones that you'll soon get immune to also. The trick I've found in dealing with all this is a combination of things that will get you through. We all find our strengths to get us through but it's not just pills. For me, I use alot of deep breathing and meditation and warm water therapy pool exercises which is just gentle stretching, ice packs (and lots of them). The trick is to keep yourself as busy as possible. IF you have 4 things in your life that are taking up your day and pain is one of them, then PAIN becomes 1/4 of your day....and that's alot for anyone to handle. BUT...if you have 100 things to keep you busy in your day...pain then becomes 1/100 percent of a day for you to control. At least that's how I see it. Keeping busy and not letting the pain control YOU...is a big big part of it. Meditation, deep breathing exercises when the pain is intense and even guided imagery works wonders when your waiting for that pain pill to kick in again. I'm on stronger pills than you and it's getting harder and harder. It's work every day to control this but you have to be the one in control...otherwise ...pain can take over and ruin your life. Don't forget to live Life!!! We hurt so much , here in this site, but having someone to talk to also helps when your in need, so feel free to let loose...cause we all have before.

Gentle hugs to you...

Pam

Have a Smiley Day...Love, Pam

From: snorky1112001 <snorky1112001@ yahoo.com>
To: Dercums_Disease@ yahoogroups. com
Sent: Tuesday, February 24, 2009 1:21:11 PM
Subject: [Dercums_Disease] Re: New to the group

(sorry for the multiple intro e-mails!)
(also if this is too detailed, please advise)

Hi Karen,

I live in a little farm town just outside of Kansas City. We are moving to Northern California (Sebastopol) in a few weeks which is the best combination of weather for family allergies and no/reduced winters and treatment.

It's a crazy time to move but I like swimming upstream sometimes :-)

I stopped working in 2006 to take care of my family's illnesses. (We drew some unlucky cards in there somewhere). Before that I worked on medical monitors (pulse oximeters). I can't imagine getting a job again but I will have to after we move, as it is so expensive to live there.

My doc has been pretty good, he is the best general doctor we've found here and he really cares about his patients. But the dermatologists! Not so good. I get migraines too, not sure how everyone here fares in that regard. I'm on statins, 7.5 hydrocodone (not so effective any longer) and triptans for the migraines.

I made the appointment in October, it's been a long 4 months! Am sure it will be worth the wait. If this isn't DD then that will be a suprise; will let you know.

I am really wondering how to manage pain. I feel my world is getting smaller right now although I hope that reverses soon.

Best,
-s

--- In Dercums_Disease@ yahoogroups. com, Karen Krzeminski <kamperk06@.. .> wrote:
>
>
> Hi Seth,
>
>
>
> Where do you live? I'm in Lake Havasu City, AZ and moved here for the dry heat as the cold and humidity was too much for me in Ohio..But here recently I got to travel the 5 hours to San Diego as well and see Dr. Karen. She is so bright and so up-to-date on this disease. Simply amazing. Do you have a PCP with an openminded attitude? Seems to be the common thread here that people complain about but I've been fortuneate twice, one in Oh and one in AZ, that are working off the treatment plan and referrals from Dr Karen...
>
> Welcome to the exclusive group... I'm sorry about the pain...Do you still work or are you on disability now?
>
>
>
> Karen K., LHC, AZ
>
>
> Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org
>
>
>
>
>
>
> To: Dercums_Disease@ yahoogroups. com
> From: snorky1112001@ ...
> Date: Mon, 23 Feb 2009 20:42:20 +0000
> Subject: [Dercums_Disease] New to the group
>
>
>
>
>
> Hi,
>
> I'm 48, male, and have about 50 lipomas. Have been in denial for much of
> this process except the pain is getting ridiculous now so it's
> impossible to ignore DD any longer.
>
> Was diagnosed by my wife a few years ago, current doc concurs with
> diagnosis. Am adopted, no family history. Lots of steroids for asthma
> since 13. Get to see Dr. Herbst on the 3rd of March, am very happy about
> that!
>
> I'm amazed at everyone's sense of humor and willingness to keep trying
> things. I hope to join you in your quest. Thanks to everyone for the
> information and especially to Dr. Herbst for being a beacon of hope.
>
> Best to all,
> Seth
>
>
>
>
>
>
>
>
>
> ____________ _________ _________ _________ _________ _________ ________
> Windows Live™ Hotmail®:…more than just e-mail.
> http://windowslive. com/explore? ocid=TXT_ TAGLM_WL_ t2_hm_justgotbet ter_explore_ 022009
>

#27427

From: Ben <Ben.Rossington@...>
Date: Fri Feb 27, 2009 2:54 pm
Subject: Re: Meds: Neurontin

ben09880

Offline

I am on 600mg 3x a day. My doctor had me on amytriptaline at night, but he has weaned me off of it. Kinda miss it- I thought it helped me sleep also. I am also on lovastatin at bedtime.

I also have cut huge amounts of high fructose corn syrup as much as possible. That helped a lot.

Just got a work from home job with HSN- helps my stress level quite a bit.

I'll be gone for the weekend, catch up with y'all this Monday.

Big gentle hugs,

Benjamin

Sent from my iPod Touch

On Feb 27, 2009, at 9:12 AM, "Will - I - Am" <waksmf@...> wrote:

>>>> Those of you that are on Neurontin, what dose are you on? I'm wondering if an increase is necessary for my pain. I'm on 400 mg. 3 x daily.

I am able to manage my pain now with 4 X 600mg daily. At night, if it has been a rough day, I might take another tablet. My doctor agrees that sleep is essential for combating the scourge, so he approved of my choice to add a little Neurontin to my cocktail at the end of the day. Now, with the amitriptyline I take in the evening and before bed, I don’t need that extra pill at night so much. The amitriptyline knocks me out pretty well. I wouldn’t say that it's effective against the pain; it does help me sleep. I also take a bunch of Tramadol throughout the day, so I am pretty well medicated. Discuss any changes with your doctor, and only mess with one variable at a time to find the right mix for you. I can get away with taking less of some things, but cannot go too far below the recommendations of my doctors. I know that I will likely be on these meds, or similar ones, so I don’t want to develop any tolerance for the things that help me with the bee stings and sudden jolts of pain (Neurontin) or the usual achiness and “bone pain” (Tramadol). Well, that’s my story and I am sticking to it. Later - William

#27426

From: Sherry Fox <shefox908@...>
Date: Fri Feb 27, 2009 2:23 pm
Subject: Re: Meds: Neurontin

shefox908

Offline

Hi Will,

At first they had me on (2) 300 mg neurontin (4) x a day. But when my rheumy took over my pain management, he immediately switched me to lyrica. He has me on 92) 150 mg 2 x a day. He informed me that lyrica is exactly like neurontin except for one ingredient that I would benefit from for the types of pain that I have. I hope that this helps.

Tootles,
Sherry

--- On Fri, 2/27/09, Will - I - Am <waksmf@...> wrote:

From: Will - I - Am <waksmf@...>
Subject: [Dercums_Disease] Meds: Neurontin
To: Dercums_Disease@yahoogroups.com
Date: Friday, February 27, 2009, 9:12 AM

>>>> Those of you that are on Neurontin, what dose are you on? I'm wondering if an increase is necessary for my pain. I'm on 400 mg. 3 x daily.

.

#27425

From: "Will - I - Am" <waksmf@...>
Date: Fri Feb 27, 2009 2:12 pm
Subject: Meds: Neurontin

waksmf1984

Offline

>>>> Those of you that are on Neurontin, what dose are you on? I'm wondering if an increase is necessary for my pain. I'm on 400 mg. 3 x daily.

I am able to manage my pain now with 4 X 600mg daily. At night, if it has been a rough day, I might take another tablet. My doctor agrees that sleep is essential for combating the scourge, so he approved of my choice to add a little Neurontin to my cocktail at the end of the day. Now, with the amitriptyline I take in the evening and before bed, I don’t need that extra pill at night so much. The amitriptyline knocks me out pretty well. I wouldn’t say that it's effective against the pain; it does help me sleep. I also take a bunch of Tramadol throughout the day, so I am pretty well medicated. Discuss any changes with your doctor, and only mess with one variable at a time to find the right mix for you. I can get away with taking less of some things, but cannot go too far below the recommendations of my doctors. I know that I will likely be on these meds, or similar ones, so I don’t want to develop any tolerance for the things that help me with the bee stings and sudden jolts of pain (Neurontin) or the usual achiness and “bone pain” (Tramadol). Well, that’s my story and I am sticking to it. Later - William

#27424

From: pamela tweed <ptweedypie@...>
Date: Fri Feb 27, 2009 1:00 am
Subject: Re: Re: New to the group

ptweedypie

Offline

Yeah, the pain pills only work for so long. Then and only if your lucky to find a doc who will up your dosage, you'll get stronger ones that you'll soon get immune to also. The trick I've found in dealing with all this is a combination of things that will get you through. We all find our strengths to get us through but it's not just pills. For me, I use alot of deep breathing and meditation and warm water therapy pool exercises which is just gentle stretching, ice packs (and lots of them). The trick is to keep yourself as busy as possible. IF you have 4 things in your life that are taking up your day and pain is one of them, then PAIN becomes 1/4 of your day....and that's alot for anyone to handle. BUT...if you have 100 things to keep you busy in your day...pain then becomes 1/100 percent of a day for you to control. At least that's how I see it. Keeping busy and not letting the pain control YOU...is a big big part of it. Meditation, deep breathing exercises when the pain is intense and even guided imagery works wonders when your waiting for that pain pill to kick in again. I'm on stronger pills than you and it's getting harder and harder. It's work every day to control this but you have to be the one in control...otherwise...pain can take over and ruin your life. Don't forget to live Life!!! We hurt so much , here in this site, but having someone to talk to also helps when your in need, so feel free to let loose...cause we all have before.

Gentle hugs to you...

Pam

Have a Smiley Day...Love, Pam

From: snorky1112001 <snorky1112001@...>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, February 24, 2009 1:21:11 PM
Subject: [Dercums_Disease] Re: New to the group

(sorry for the multiple intro e-mails!)
(also if this is too detailed, please advise)

Hi Karen,

I live in a little farm town just outside of Kansas City. We are moving to Northern California (Sebastopol) in a few weeks which is the best combination of weather for family allergies and no/reduced winters and treatment.

It's a crazy time to move but I like swimming upstream sometimes :-)

I stopped working in 2006 to take care of my family's illnesses. (We drew some unlucky cards in there somewhere). Before that I worked on medical monitors (pulse oximeters). I can't imagine getting a job again but I will have to after we move, as it is so expensive to live there.

My doc has been pretty good, he is the best general doctor we've found here and he really cares about his patients. But the dermatologists! Not so good. I get migraines too, not sure how everyone here fares in that regard. I'm on statins, 7.5 hydrocodone (not so effective any longer) and triptans for the migraines.

I made the appointment in October, it's been a long 4 months! Am sure it will be worth the wait. If this isn't DD then that will be a suprise; will let you know.

I am really wondering how to manage pain. I feel my world is getting smaller right now although I hope that reverses soon.

Best,
-s

--- In Dercums_Disease@ yahoogroups. com, Karen Krzeminski <kamperk06@.. .> wrote:
>
>
> Hi Seth,
>
>
>
> Where do you live? I'm in Lake Havasu City, AZ and moved here for the dry heat as the cold and humidity was too much for me in Ohio..But here recently I got to travel the 5 hours to San Diego as well and see Dr. Karen. She is so bright and so up-to-date on this disease. Simply amazing. Do you have a PCP with an openminded attitude? Seems to be the common thread here that people complain about but I've been fortuneate twice, one in Oh and one in AZ, that are working off the treatment plan and referrals from Dr Karen...
>
> Welcome to the exclusive group... I'm sorry about the pain...Do you still work or are you on disability now?
>
>
>
> Karen K., LHC, AZ
>
>
> Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org
>
>
>
>
>
>
> To: Dercums_Disease@ yahoogroups. com
> From: snorky1112001@ ...
> Date: Mon, 23 Feb 2009 20:42:20 +0000
> Subject: [Dercums_Disease] New to the group
>
>
>
>
>
> Hi,
>
> I'm 48, male, and have about 50 lipomas. Have been in denial for much of
> this process except the pain is getting ridiculous now so it's
> impossible to ignore DD any longer.
>
> Was diagnosed by my wife a few years ago, current doc concurs with
> diagnosis. Am adopted, no family history. Lots of steroids for asthma
> since 13. Get to see Dr. Herbst on the 3rd of March, am very happy about
> that!
>
> I'm amazed at everyone's sense of humor and willingness to keep trying
> things. I hope to join you in your quest. Thanks to everyone for the
> information and especially to Dr. Herbst for being a beacon of hope.
>
> Best to all,
> Seth
>
>
>
>
>
>
>
>
>
> ____________ _________ _________ _________ _________ _________ ________
> Windows Live™ Hotmail®:…more than just e-mail.
> http://windowslive. com/explore? ocid=TXT_ TAGLM_WL_ t2_hm_justgotbet ter_explore_ 022009
>

#27423

From: "contactformslddstudy" <kaherbst@...>
Date: Fri Feb 27, 2009 12:45 am
Subject: Help Dr. Herbst

contactforms...

Offline

Hi Ladies: I am up for advancing to Associate Professor from Assistant
Professor and am going to ask a favor of all of you. If you feel
inclined, can you please write a letter in support of my clinical work
with you.  These letters will be submitted with my application for
advancement.

Please send letters to:
Karen Herbst
3350 La Jolla Village Drive
Mailcode 111G
San Diego, CA, 92161

I really appreciate this!

Karen

Reply | Forward | Messages in this Topic (2)

#27422

From: "ndjohnson1027" <ndjohnson1027@...>
Date: Thu Feb 26, 2009 11:15 pm
Subject: hi everyone!

ndjohnson1027

Offline

I had 2 of the tests done today out of the 5. i had my ultra sound of my carotid
artery today
and the ct scan of my chest done. and i had my blood work done on sat. so all
that is left for
now is my mri of my head and the EEG.
those will be on march 5th and then i will return to my dr. again. to get all
results. i
contacted a surgeon today and made an appointment with them for march 30th. to
see about
getting one or some of the tumors removed. they seem like really caring people.
i told them i
had no insurance and they told me they would only charge me 60.00 for a dr.s
visit. and then
i asked them about the surgery and they said that if i lived in de. which i
don't that i could
get up to 100% off the surgery. but since i don't and they won't except maryland
medicaid if i
get it they will try and see if the dr. will do it pro bono but it would only go
based on our
income. so just pray for me and my husband that we don't make enough so i can
get the
help i desperately need and have been waiting for since 2004!

thanks for all the support
  Dawn

Reply | Forward | Messages in this Topic (1)

#27421

From: Kathie Henton <ksborderqueen@...>
Date: Thu Feb 26, 2009 2:26 pm
Subject: Re: Re: New to the group

ksborderqueen

Offline

Seth,

I've searched for anyone in the area of Kansas, Oklahoma, Missouri that might be able to #1 confirm my diagnosis of DD and #2 help treat it. I did see a doc in KC last year but he thought it might be one of two things and when those test came back negative, then it was nothing. Any great doctor (s) you would want to share, I'd love to know.

Kathie from the Kansas Borderqueen City of Caldwell

--- On Tue, 2/24/09, snorky1112001 <snorky1112001@...> wrote:

From: snorky1112001 <snorky1112001@...>
Subject: [Dercums_Disease] Re: New to the group
To: Dercums_Disease@yahoogroups.com
Date: Tuesday, February 24, 2009, 1:21 PM

(sorry for the multiple intro e-mails!)
(also if this is too detailed, please advise)

Hi Karen,

I live in a little farm town just outside of Kansas City. We are moving to Northern California (Sebastopol) in a few weeks which is the best combination of weather for family allergies and no/reduced winters and treatment.

It's a crazy time to move but I like swimming upstream sometimes :-)

I stopped working in 2006 to take care of my family's illnesses. (We drew some unlucky cards in there somewhere). Before that I worked on medical monitors (pulse oximeters). I can't imagine getting a job again but I will have to after we move, as it is so expensive to live there.

My doc has been pretty good, he is the best general doctor we've found here and he really cares about his patients. But the dermatologists! Not so good. I get migraines too, not sure how everyone here fares in that regard. I'm on statins, 7.5 hydrocodone (not so effective any longer) and triptans for the migraines.

I made the appointment in October, it's been a long 4 months! Am sure it will be worth the wait. If this isn't DD then that will be a suprise; will let you know.

I am really wondering how to manage pain. I feel my world is getting smaller right now although I hope that reverses soon.

Best,
-s

--- In Dercums_Disease@ yahoogroups. com, Karen Krzeminski <kamperk06@.. .> wrote:
>
>
> Hi Seth,
>
>
>
> Where do you live? I'm in Lake Havasu City, AZ and moved here for the dry heat as the cold and humidity was too much for me in Ohio..But here recently I got to travel the 5 hours to San Diego as well and see Dr. Karen. She is so bright and so up-to-date on this disease. Simply amazing. Do you have a PCP with an openminded attitude? Seems to be the common thread here that people complain about but I've been fortuneate twice, one in Oh and one in AZ, that are working off the treatment plan and referrals from Dr Karen...
>
> Welcome to the exclusive group... I'm sorry about the pain...Do you still work or are you on disability now?
>
>
>
> Karen K., LHC, AZ
>
>
> Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org
>
>
>
>
>
>
> To: Dercums_Disease@ yahoogroups. com
> From: snorky1112001@ ...
> Date: Mon, 23 Feb 2009 20:42:20 +0000
> Subject: [Dercums_Disease] New to the group
>
>
>
>
>
> Hi,
>
> I'm 48, male, and have about 50 lipomas. Have been in denial for much of
> this process except the pain is getting ridiculous now so it's
> impossible to ignore DD any longer.
>
> Was diagnosed by my wife a few years ago, current doc concurs with
> diagnosis. Am adopted, no family history. Lots of steroids for asthma
> since 13. Get to see Dr. Herbst on the 3rd of March, am very happy about
> that!
>
> I'm amazed at everyone's sense of humor and willingness to keep trying
> things. I hope to join you in your quest. Thanks to everyone for the
> information and especially to Dr. Herbst for being a beacon of hope.
>
> Best to all,
> Seth
>
>
>
>
>
>
>
>
>
> ____________ _________ _________ _________ _________ _________ ________
> Windows Live™ Hotmail®:…more than just e-mail.
> http://windowslive. com/explore? ocid=TXT_ TAGLM_WL_ t2_hm_justgotbet ter_explore_ 022009
>

#27420

From: veronica bojerski <veronika117@...>
Date: Wed Feb 25, 2009 7:23 pm
Subject: Looking for info regarding a Dercum's "foundation"

vbojerski

Offline

Although I am not dealing with Dercum's myself I was interested in becoming involved in any education/awareness, fundraising or scholarship charities/activities/opportunities. Can anyone provide me with a contact or link? I also have the name of a holistic practitioner in the Cleveland, Ohio area who is planning on taking some of his work with patients to the television networks later this year if anyone might be interested. Thank you.

Veronica

To: Dercums_Disease@yahoogroups.com
From: snorky1112001@...
Date: Tue, 24 Feb 2009 19:21:11 +0000
Subject: [Dercums_Disease] Re: New to the group

(sorry for the multiple intro e-mails!)
(also if this is too detailed, please advise)

Hi Karen,

I live in a little farm town just outside of Kansas City. We are moving to Northern California (Sebastopol) in a few weeks which is the best combination of weather for family allergies and no/reduced winters and treatment.

It's a crazy time to move but I like swimming upstream sometimes :-)

I stopped working in 2006 to take care of my family's illnesses. (We drew some unlucky cards in there somewhere). Before that I worked on medical monitors (pulse oximeters). I can't imagine getting a job again but I will have to after we move, as it is so expensive to live there.

My doc has been pretty good, he is the best general doctor we've found here and he really cares about his patients. But the dermatologists! Not so good. I get migraines too, not sure how everyone here fares in that regard. I'm on statins, 7.5 hydrocodone (not so effective any longer) and triptans for the migraines.

I made the appointment in October, it's been a long 4 months! Am sure it will be worth the wait. If this isn't DD then that will be a suprise; will let you know.

I am really wondering how to manage pain. I feel my world is getting smaller right now although I hope that reverses soon.

Best,
-s

--- In Dercums_Disease@yahoogroups.com, Karen Krzeminski <kamperk06@...> wrote:
>
>
> Hi Seth,
>
>
>
> Where do you live? I'm in Lake Havasu City, AZ and moved here for the dry heat as the cold and humidity was too much for me in Ohio..But here recently I got to travel the 5 hours to San Diego as well and see Dr. Karen. She is so bright and so up-to-date on this disease. Simply amazing. Do you have a PCP with an openminded attitude? Seems to be the common thread here that people complain about but I've been fortuneate twice, one in Oh and one in AZ, that are working off the treatment plan and referrals from Dr Karen...
>
> Welcome to the exclusive group... I'm sorry about the pain...Do you still work or are you on disability now?
>
>
>
> Karen K., LHC, AZ
>
>
> Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org
>
>
>
>
>
>
> To: Dercums_Disease@yahoogroups.com
> From: snorky1112001@...
> Date: Mon, 23 Feb 2009 20:42:20 +0000
> Subject: [Dercums_Disease] New to the group
>
>
>
>
>
> Hi,
>
> I'm 48, male, and have about 50 lipomas. Have been in denial for much of
> this process except the pain is getting ridiculous now so it's
> impossible to ignore DD any longer.
>
> Was diagnosed by my wife a few years ago, current doc concurs with
> diagnosis. Am adopted, no family history. Lots of steroids for asthma
> since 13. Get to see Dr. Herbst on the 3rd of March, am very happy about
> that!
>
> I'm amazed at everyone's sense of humor and willingness to keep trying
> things. I hope to join you in your quest. Thanks to everyone for the
> information and especially to Dr. Herbst for being a beacon of hope.
>
> Best to all,
> Seth
>
>
>
>
>
>
>
>
>
> _________________________________________________________________
> Windows Live� Hotmail�:�more than just e-mail.
> http://windowslive.com/explore?ocid=TXT_TAGLM_WL_t2_hm_justgotbetter_explore_022009
>

Windows Live� Hotmail�:�more than just e-mail. Check it out.

#27419

From: veronica bojerski <veronika117@...>
Date: Tue Feb 24, 2009 10:20 pm
Subject: RE: DD Remission/Not Dercum's

vbojerski

Offline