Dercums_Disease : Messages : 24508-24537 of 29331

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)

#24536

From: Sherry Fox <shefox908@...>
Date: Thu Jan 31, 2008 8:48 pm
Subject: Re: Taking a shower makes me cry

shefox908

Offline

Hi Calle,

It sounds like your husband might be in some kind of denial. Recently I received a card from an old friend saying "Get Well Soon". Of course I know that his intentions were well, but it seems that most people do not get the fact that we will never get well. They think of DD as something like cancer were there are so many effective treatments and so many complete cures. They just don't get it.

Sherry

calle_kitten <callekitten@...> wrote:

Hey all, I am sitting here with big tears running down my face. I
took me several days to work up the courage to face the shower. I
have recently let my hair grow long, now with DD I think it is the
only normal thing I have left, the only pretty thing left in me.

When my husband left to do an errand today he said you just
concentrate on getting well.

Doesnt he know I am not going to get well??

He has read everything I have.

He see/feels my lumps and bumps.

I can't even take a friggin shower without being exhausted. Much
less go places and do things. This summer at my moms, before I knew
I had dd, I said to him, why do i have NO energy, a lil walk around
would just exhaust me. It still does.

Doc put me on lycria. The only thing (and its a biggie) that it
seems to have helped so far is I am not constantly itching now. He
started me out at 75mgs at night.

I am so depressed and so sad.

Have no friends, have no energy to get any.

Live in a pig sty, hubbys not good about picking anything up.j

I would like to have gone somewhere tonite but hubby took my truck.
Its MY TRUCK he has a jeep he keeps around, we pay insurance on it,
but he always says its too cold to drive it. THEN Why keep it ? I
don't get it.

Can't stop crying. Sorry to have let go.

Calle//carin in az

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#24535

From: Sherry Fox <shefox908@...>
Date: Thu Jan 31, 2008 8:31 pm
Subject: Re: Re: Losing Weight

shefox908

Offline

No, not really. After hearing from others with this disease and how they would get sick suddenly and for no reason, I guess I just assumed that this weight loss and all happens once you reach a certain point with DD.

Sherry

aubtsturgeon <aubtsturgeon@...> wrote:

Heya Sherry.

I recently had the same occur for me, however the shift did not occur
until after I changed my nutrition and possibly a combination of not
pushing against the disease and finding the ideal medication for me.

Like you this has not affected the growths and it does seem that the
hands/thighs/lower abdomen are still unusually fattier or larger still
than the rest of the body.
Also I find it does not diminish any of the symptoms associated with
Dercums, such as the pain/fatigue/etc.

So I am not sure if its specifically one action or a combination of
factors.
I think it may have been a combination of a strict nutritional intake
combined with listening to the body (finding physical and mental
limitations) and not pushing against it that often.
In my experience if I start to reach the dizzy/itching skin/bad
concentration level its a sign I am pushing and the disease is
responding; these for me are the markers to show the symptoms are about
to increase to really unpleasant levels that those who do not suffer
this illness cannot understand.

Have you changed anything that you think could had an affect on this?

Cheers
Aubrey :)

--- In Dercums_Disease@yahoogroups.com, "shefox908" <shefox908@...>
wrote:
>
>
> Hi everyone,
>
> For the last 3 months maybe, I have lost 23 pounds. I was gaining
> weight very rapidly and went from 131 to 168 in about two years. I am
> 5'4" and now weigh 145. I was not trying to lose really, it is just
> that I do not have much of an appitite and I get nausiated alot and
> throw up alot too. Since I have lost all that weight I can honestly
> say that I am not nearly as stiff as I was before and that is a good
> thing. But the bad thing is that it seems that the fat I lost was the
> normal fat and that normal fat helped cushion the tumors and the
> abnormal globular fat that is painful. So now when I sit, take a
> bath, walk, stand, you name it, there is so much more pain. It's
> getting a little scary now because I cannot control my weight loss at
> all.
>
> Is there anyone out there who can shed some light on what is going on
> with me now? If it is what I think it is, if it is something that
> might upset another reader, please e-mail me privately. Someone has
> got to know something.
>
> Sherry
>

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#24534

From: "Renee' Rohde" <raenjad@...>
Date: Thu Jan 31, 2008 5:44 am
Subject: Re: Dishes, Clothes, Vacuuming, Dusting, Oh My!

rockin_robin...

Offline

Wow that's amazing Carole. I'm so glad they're there to help you. I was cleaning toinght and now my back is killing me, i don't know if its my lumps or if i really did pull something. nothing's helping the pain right now.

Hope you're doing as well as you can. Lots of love and prayers to you and all our fellow DD friends.

On Jan 30, 2008 8:13 AM, carole p <mrs.stikbow@...> wrote:

Has anybody checked into getting help from the State to have someone come to your home and help?

I am in the "Chores" program and have been given several hours for someone to come to my home to clean, help with laundry, dishes, vacuuming, dusting, bathrooms, change my sheets and keep my house straighted up. They also help with my personal needs. Everything from being available while I'm struggling with the shower, to applying lotion, to gently rubbing my tumors when they hurt so much they won't let me be a human. On those days I can't think, they remind me to take my pills, tell me where I left something, even help with the phone calls. They go to my doctor appointments with me and help when I'm not able to communicate, explain, or understand what is happening.

My 'carebear' (that's what I call my care giver) also helps fix meals because I'm not safe with the stove or knives or microwave. She carries my plate and glass to the table so I won't spill, and stays close by in case I have trouble swallowing. She'll clean the microwave, oven and refrigerator. She even makes life 'normal' with the smell of freshly baked cookies for my husband. Oh I could go on and on telling you how they've allowed me to be a 'human' when I'm not me!

If your State has it, check into the CHORES program through DSHS. The paperwork is rather involved and I had to have help with it all, but what a blessing!!

When my body and mind are useless, at least my home is clean!

blessings to our hearts and bodies, carolep

#24533

From: Fabric100 <Fabric100@...>
Date: Wed Jan 30, 2008 11:53 pm
Subject: RE: Taking a shower makes me cry

fabric102

Offline

Dear Calle,

First, please know that you are not alone.  Though you may not have
friends next door to you, you have friends here.  Those on this list and
other lists for DD patients are great source of friendship, support and
caring.  Everyone here understands the physical and emotional trials
that you are going through.  I don't know much of your story as I can't
quite keep everyone straight, but know that others do care about you.
My situation is that my daughter (almost 23) was diagnosed first.  She
has faced medical problems since the age of 11 and was diagnosed with DD
at 18.  She's had a particularly trying year and is currently
essentially bedridden.  I've had symptoms of DD for years, but never
knew what it was.  Now, I have the diagnosis, too.  My husband (who VERY
thankfully can still work) has a rare neurological disorder.  We have
four children together, with two still at home.  The son living at home
is 25 and has his own medical issues.  To say the least, we have learned
many, many ways to 'adapt and endure'.  May I share just a few with you?

We've started using as many disposable plates, cutlery, cups, pans, etc.
that we can. yes, yes, yes I do know about recycling, etc, etc, etc BUT
my immediate environment needs to stay as clean and healthy as
possible.  By reducing dishes, we have reduced our work and frustration
load.  The cost is manageable if you buy everything in bulk.

We have simplified all of our meals.  I used to cook full scale 'family
style' dinners every night.  Now, we might have waffles or a one pot
dinner.  I keep very simple to fix food on hand at all times.  I think
the grocery store cooked rotisserie chickens are a modern miracle.  If I
lived alone, I think I could live off of those things & a few
vegetables.  :)

We have lowered our expectations and learned to live with more patience
than I ever thought possible.  What we used to plan, execute and
complete in a weekend often takes months.  If a project isn't done
immediately, we just let it go.

"Let it go" is also a good phrase to burn into your brain.  People are
going to be ignorant and say stupid things.  Some days are just going to
go badly.  Medical personnel can be jerks.  Insurance companies can be
frustrating.  it all adds up and can give you a rip roaring headache and
heartache.  As much as possible, try to 'let it go'. Save the upsets for
REALLY big things.

Make lists.  This helps you feel like you are accomplishing something
and is a great tool to combat the mental fog.

Put small trash cans in every room of your house.  We have some rooms
with more than one tucked away in a corner.  (No, our house doesn't look
like the recycling center).  Line all of the waste cans with the
appropriate sized bags.  We use grocery bags in the small ones.  This
helps a lot with 'stuff' getting thrown away instead of set down.

Readjust your expectations.  Congratulate yourself for accomplishing
anything--even getting dressed.  In my 20's, I contracted encephalitis
and frankly lost months of my life.  My goal each day was to get out of
bed (if possible) and simply make sure my then two pre-school sons were
alive at the end of the day.  Anything else was 'gravy'.

Stay around positive people, music, TV and movies.  If family members or
others are negative, avoid them as much as possible.  Watch funny old
movies.  Read uplifting books.  Listen to music that makes you feel
better.  It all helps.

If you have a spiritual life, embrace it on the level that you can
physically.  Meditate, pray, spend quiet time re-centering
yourself---even if you don't have a 'religious' life.

Definitely check into any social services you qualify for.  I noticed
you are in Arizona.  My Mom & Sister live in Tucson where I grew up.  I
know there is a meals on wheels program there, but don't know what else
there might be.  Do a 'google search' to see what you can find.  It is
often difficult to seek out and accept help, but you need all of the
support you can find.

We have re-aligned household responsibilities.  My experience with males
is that they usually appreciate clearly defined jobs that are
'their's'.  Thankfully, my husband has always been good about helping
out as asked, but sometimes doesn't 'see' what needs to be done.  Even
with the helpful attitude, he does best when a specific area is his.
Right now, his main area is laundry.  I try to process it during the
week if I can (run through washer and dryer) but he is responsible for
folding everything & getting it to the correct room.  This job fits his
particular abilities & he can fold while he watches TV.

Develop interests that you can do within your physical and financial
limits.  Don't feel guilty about watching TV if it helps you feel
better.  Try to watch something that uplifts you and maybe learn
something new.

Don't feel bad about 'letting go'.  Sometimes, you just need a good
cry.  I think the movie "Steal Magnolias" is a great one for emotional
release. You can laugh yourself silly and cry your heart out all in one
movie.

Don't watch things that depress you.  My daughter can no longer stand to
watch medical TV shows.  She says it is too close to her life and most
of them make her mad because they are so full of inaccuracies.

That's all I can think of for now.  Always know that there are groups of
us out here in cyberspace.  Chat online and make friends with those who
accept who you are and where you are.

Big hugs to you!!!

Anne

#24532

From: "calle_kitten" <callekitten@...>
Date: Wed Jan 30, 2008 7:29 pm
Subject: Re: Taking a shower makes me cry

calle_kitten

Offline

--- In Dercums_Disease@yahoogroups.com, Pamela Harrison
<ozziespamela@...> wrote:

Pamela, thanks so much for that thought.  I had a big one when I
could not place any weight on my knee for about 2 years, but when I
got well enough to walk a little we got rid of it.  Oh, for
longsightedness.

Thanks everyone, for the help and encouragement.  I had not taken any
of my meds as I was nauseated and had a sick stomach.  I guess my
cymbalta helps more than I knew.  That was one of the questions hubby
asked me, did you take your meds, and of course that question makes
me even crazier, as if my issues have no standing.

But I took the cymbalta and he hung in there with me.  I make him
sound like a monster in here, but he is really very supportive and
generous man, as well as romantic.  I just don't think he gets that I
am not going to get better.

Again thank you all.

Hugs.

Calle//Carin/AZ
>

#24531

From: Pamela Harrison <ozziespamela@...>
Date: Wed Jan 30, 2008 6:04 pm
Subject: Re: Re: Taking a shower makes me cry

ozziespamela

Offline

Hi Calle,
Just wanted to add that a shower seat helps alot too. I can't stand very long, so having a place to sit is a necessity.
Pamela

----- Original Message ----
From: aubtsturgeon <aubtsturgeon@...>
To: Dercums_Disease@yahoogroups.com
Sent: Wednesday, January 30, 2008 8:01:26 AM
Subject: [Dercums_Disease] Re: Taking a shower makes me cry

Calle,
like you I prefer showers and face the challenge of energy levels.
I find that it works better to wash your hair one day, and then have a
shower just for the body and not the hair another time.
This really does help.

It hurts to hear that your feeling so sad and emotionally down, has this
started since taking Lycria?

Cheers
Aubrey :)

--- In Dercums_Disease@ yahoogroups. com, "calle_kitten" <callekitten@ ...>
wrote:
>
> Hey all, I am sitting here with big tears running down my face. I
> took me several days to work up the courage to face the shower. I
> have recently let my hair grow long, now with DD I think it is the
> only normal thing I have left, the only pretty thing left in me.
>

Never miss a thing. Make Yahoo your homepage.

#24530

From: "carole p" <mrs.stikbow@...>
Date: Wed Jan 30, 2008 2:13 pm
Subject: Dishes, Clothes, Vacuuming, Dusting, Oh My!

mrs.stikbow

Offline

Has anybody checked into getting help from the State to have someone come to your home and help?

I am in the "Chores" program and have been given several hours for someone to come to my home to clean, help with laundry, dishes, vacuuming, dusting, bathrooms, change my sheets and keep my house straighted up. They also help with my personal needs. Everything from being available while I'm struggling with the shower, to applying lotion, to gently rubbing my tumors when they hurt so much they won't let me be a human. On those days I can't think, they remind me to take my pills, tell me where I left something, even help with the phone calls. They go to my doctor appointments with me and help when I'm not able to communicate, explain, or understand what is happening.

My 'carebear' (that's what I call my care giver) also helps fix meals because I'm not safe with the stove or knives or microwave. She carries my plate and glass to the table so I won't spill, and stays close by in case I have trouble swallowing. She'll clean the microwave, oven and refrigerator. She even makes life 'normal' with the smell of freshly baked cookies for my husband. Oh I could go on and on telling you how they've allowed me to be a 'human' when I'm not me!

If your State has it, check into the CHORES program through DSHS. The paperwork is rather involved and I had to have help with it all, but what a blessing!!

When my body and mind are useless, at least my home is clean!

blessings to our hearts and bodies, carolep

#24529

From: "aubtsturgeon" <aubtsturgeon@...>
Date: Wed Jan 30, 2008 2:01 pm
Subject: Re: Taking a shower makes me cry

aubtsturgeon

Offline

Calle,
like you I prefer showers and face the challenge of energy levels.
I find that it works better to wash your hair one day, and then have a
shower just for the body and not the hair another time.
This really does help.

It hurts to hear that your feeling so sad and emotionally down, has this
started since taking Lycria?

Cheers
Aubrey :)


--- In Dercums_Disease@yahoogroups.com, "calle_kitten" <callekitten@...>
wrote:
>
> Hey all, I am sitting here with big tears running down my face. I
> took me several days to work up the courage to face the shower. I
> have recently let my hair grow long, now with DD I think it is the
> only normal thing I have left, the only pretty thing left in me.
>
> When my husband left to do an errand today he said you just
> concentrate on getting well.
>
> Doesnt he know I am not going to get well??
>
> He has read everything I have.
>
> He see/feels my lumps and bumps.
>
> I can't even take a friggin shower without being exhausted. Much
> less go places and do things. This summer at my moms, before I knew
> I had dd, I said to him, why do i have NO energy, a lil walk around
> would just exhaust me. It still does.
>
> Doc put me on lycria. The only thing (and its a biggie) that it
> seems to have helped so far is I am not constantly itching now. He
> started me out at 75mgs at night.
>
> I am so depressed and so sad.
>
> Have no friends, have no energy to get any.
>
> Live in a pig sty, hubbys not good about picking anything up.j
>
> I would like to have gone somewhere tonite but hubby took my truck.
> Its MY TRUCK he has a jeep he keeps around, we pay insurance on it,
> but he always says its too cold to drive it. THEN Why keep it ? I
> don't get it.
>
> Can't stop crying. Sorry to have let go.
>
> Calle//carin in az
>

#24528

From: "aubtsturgeon" <aubtsturgeon@...>
Date: Wed Jan 30, 2008 1:44 pm
Subject: Re: Losing Weight

aubtsturgeon

Offline

Heya Sherry.

I  recently had the same occur for me, however the shift did not occur
until after I changed my nutrition and possibly a combination of not
pushing against the disease and finding the ideal  medication for me.

Like you this has not affected the growths and it does seem that the
hands/thighs/lower abdomen are still unusually fattier or larger still
than the rest of the body.
Also I find it does not diminish any of the symptoms associated with
Dercums, such as the pain/fatigue/etc.

So I am not sure if its specifically one action or a combination of
factors.
I think it may have been a combination of a strict nutritional intake
combined with listening to the body (finding physical and mental
limitations) and not pushing against it that often.
In my experience if I start to reach the dizzy/itching skin/bad
concentration level its a sign I am pushing and the disease is
responding; these for me are the markers to show the symptoms are about
to increase to really unpleasant levels that those who do not suffer
this illness cannot understand.

Have you changed anything that you think could had an affect on this?

Cheers
Aubrey :)

--- In Dercums_Disease@yahoogroups.com, "shefox908" <shefox908@...>
wrote:
>
>
> Hi everyone,
>
> For the last 3 months maybe, I have lost 23 pounds. I was gaining
> weight very rapidly and went from 131 to 168 in about two years. I am
> 5'4" and now weigh 145. I was not trying to lose really, it is just
> that I do not have much of an appitite and I get nausiated alot and
> throw up alot too. Since I have lost all that weight I can honestly
> say that I am not nearly as stiff as I was before and that is a good
> thing. But the bad thing is that it seems that the fat I lost was the
> normal fat and that normal fat helped cushion the tumors and the
> abnormal globular fat that is painful. So now when I sit, take a
> bath, walk, stand, you name it, there is so much more pain. It's
> getting a little scary now because I cannot control my weight loss at
> all.
>
> Is there anyone out there who can shed some light on what is going on
> with me now? If it is what I think it is, if it is something that
> might upset another reader, please e-mail me privately. Someone has
> got to know something.
>
> Sherry
>

#24527

From: "Davana Gaines" <lenightmoods@...>
Date: Wed Jan 30, 2008 4:38 am
Subject: RE: Taking a shower makes me cry

lenightmoods

Offline

No one seems to understand that it is indeed a progressive chronic disease and they keep wanting us to get better (as I only wish was possible) I think it must be human nature to think that way so we will have hope. I get too depressed if I think too far in advance I just take one day at a time and do what I can and let the rest go. I have dogs and cats and what a mess my house is. I sometimes have to have my friend clean it for me as I can’t afford a housecleaner. I cook about one day a week now and that is a big deal. I am in my bedroom most of the time now and I can’t stand the cold either. Just going to Dr appt is exhausting. I have started having groceries delivered from Safeway. Driving is very painful if I go very far. I would like friends to visit but am embarrassed at the state my house is in sometimes. I know that they probably understand but it is hard. I am trying to accept what I can’t change & change what I can. The Serenity Prayer is a constant with me. I try to remember I am a human being not a human doing anymore. I thank God for my computer and the friends I have online. It is hard for those not suffering with DD to understand what we go thru, but I try to think about how lucky I am Its not Cancer or some other horrible disease. I can still smile and laugh at my silly self. I thought about President Wilson and how when he had Polio he still ran a country WOW! I’m not that good but I guess I can try and keep on keeping on, Just for today, maybe, HUH? That’s another good one “One Day at a Time” I hope you feel better and know I understand and I am in the same boat as you, Know you aren’t alone and I care. I am doing what I can in the way of treatments to see if they help and will pass it on. Maybe the interferon will be helpful to shrink or even get rid of these tumors and then everyone could try it. I will be passing on all outcomes with you.

God Bless

Davana

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of calle_kittenand
Sent: Tuesday, January 29, 2008 6:10 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] Taking a shower makes me cry

Hey all, I am sitting here with big tears running down my face. I
took me several days to work up the courage to face the shower. I
have recently let my hair grow long, now with DD I think it is the
only normal thing I have left, the only pretty thing left in me.

When my husband left to do an errand today he said you just
concentrate on getting well.

Doesnt he know I am not going to get well??

He has read everything I have.

He see/feels my lumps and bumps.

I can't even take a friggin shower without being exhausted. Much
less go places and do things. This summer at my moms, before I knew
I had dd, I said to him, why do i have NO energy, a lil walk around
would just exhaust me. It still does.

Doc put me on lycria. The only thing (and its a biggie) that it
seems to have helped so far is I am not constantly itching now. He
started me out at 75mgs at night.

I am so depressed and so sad.

Have no friends, have no energy to get any.

Live in a pig sty, hubbys not good about picking anything up.j

I would like to have gone somewhere tonite but hubby took my truck.
Its MY TRUCK he has a jeep he keeps around, we pay insurance on it,
but he always says its too cold to drive it. THEN Why keep it ? I
don't get it.

Can't stop crying. Sorry to have let go.

Calle//carin in az

#24526

From: yankeestovall@...
Date: Tue Jan 29, 2008 10:39 pm
Subject: Re: Taking a shower makes me cry

brunerjoan

Offline

Calle, My prayers and thoughts are with you now. It is difficult for me and all of us to find we are unable to do things we might have done just the week before. I hope you will have some better days soon. Tomorrow night the temp here will drop to zero. Even so I think that I feel worse in rainy weather, Joan

Start the year off right. Easy ways to stay in shape in the new year.

#24525

From: jhelai9@...
Date: Tue Jan 29, 2008 9:18 pm
Subject: Re: Taking a shower makes me cry

elaine103056

Offline

I know how you feel..Its hard to but I still clean up and thank God I can still take showers but going out in the cold and wet is almost impossible for me..I have horses that I have had for many years and its been hard for me to even go to feed them at night..I gave one away and will probably wind up giving all away just to avoid having to go outside in the cold.The only thing that keeps me going is my faith that there is something I can do every day...I do a few dishes at a time or my grand daughter does them once in a while...I vacuum once a week MAYBE...I cant help it..today something weird happened and I slept all day..I had a lot of stings and deep ache ..but it rained a bunch today and now a cold front is coming thru..I just take one day at a time..And yes the Amitriptilyn(sp?) helps me some..I take two at night and a Tramadol and Benedryl..I dont always sleep well but it helps..Last night my legs just wouldn't be still..I felt "jumpy"...Its alright to vent..I do too..we all need somebody to talk to...keep on talking..

Start the year off right. Easy ways to stay in shape in the new year.

#24524

From: "calle_kitten" <callekitten@...>
Date: Wed Jan 30, 2008 2:10 am
Subject: Taking a shower makes me cry

calle_kitten

Offline

Hey all, I am sitting here with big tears running down my face.  I
took me several days to work up the courage to face the shower.  I
have recently let my hair grow long, now with DD I think it is the
only normal thing I have left, the only pretty thing left in me.

When my husband left to do an errand today he said   you just
concentrate on getting well.

Doesnt he know I am not going to get well??

He has read everything I have.

He see/feels my lumps and bumps.

I can't even take a friggin shower without being exhausted.  Much
less go places and do things.  This summer at my moms, before I knew
I had dd, I said to him, why do i have NO energy, a lil walk around
would just exhaust me.  It still does.

Doc put me on lycria.  The only thing (and its a biggie) that it
seems to have helped so far is I am not constantly itching now.  He
started me out at 75mgs at night.

I am so depressed and so sad.

Have no friends, have no energy to get any.

Live in a pig sty, hubbys not good about picking anything up.j

I would like to have gone somewhere tonite but hubby took my truck.
Its MY TRUCK  he has a jeep he keeps around, we pay insurance on it,
but he always says its too cold to drive it.  THEN Why keep it ?  I
don't get it.

Can't stop crying. Sorry to have let go.

Calle//carin in az

#24523

From: "irakel2" <irakel2@...>
Date: Tue Jan 29, 2008 9:01 pm
Subject: Nerve conduction test

irakel2

Offline

I had a nerve conduction test about a year and a half ago.The same
thing happened to me. They said nothing was wrong. On my left leg
something wasn't right, but then he said it was fine. That is the leg
that feels half a sleep all the time. He had never heard of dercum's,
and was not very nice.
I am sure tired of rain and cold. I hurt more this winter then others.I
live in northern Califoria. Last year we didn't get much rain,but we
are getting a lot now.
Donna

Reply | Forward | Messages in this Topic (1)

#24522

From: Sherry Fox <shefox908@...>
Date: Tue Jan 29, 2008 8:31 pm
Subject: Re: Nerve conduction test..

shefox908

Offline

I just wanted to let you know that a foot doctor (podiatrist) is not a medical doctor but rather a doctor of podiatry medicine. Where as an ortho surgeon is a medical doctor who performs surgery on the feet as well. It was my plastic surgeon who informed me of that when I mentioned having my feet tumors looked at my a podiatrist. He strongly suggested that with this DD that an ortho would be my best bet.

Sherry

jhelai9@... wrote:

Im in that boat with you...I have a bunch of them on my spine as well.And developed the hump between the shoulders..Lying on that bed was hard...I cant lie on stomach due to large lump in mid section and all the ones on my back prevent me from lying on my back ..both of which I had to do..And the shocks to the nerves left my hands and feet hurting..The needles in the muscle didn't help either. I am however going to get my hernia repaired because when I was lying there it gave me a big problem..and even though my Dr couldn't feel the lump in my foot I KNOW its there due to feeling like Im walking on or standing on a rather large marble all the time, so Im off to a foot specialist.It just feels like Im breaking down physically but I try hard not to let it happen to me mentally..That's another topic for sure...

Start the year off right. Easy ways to stay in shape in the new year.

Never miss a thing. Make Yahoo your homepage.

#24521

From: "eibrinkjansen" <eibrinkjansen@...>
Date: Mon Jan 28, 2008 4:45 pm
Subject: Re: HELP!!!!

eibrinkjansen

Offline

Hi Dr. Karen,

I got it! Thank you sooo much! The Medical Insurance is busy with my case. They asked some more questions and I needed a letter from my GP and then they let me know if and when I can go to the obesitas clinic. There they will access me and if they ok it I can go to Belgium for the gastric sleeve. I will keep you informed.

God bless! Froukje

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

From: Karen Herbst

To: Dercums_Disease@yahoogroups.com

Sent: Monday, January 28, 2008 5:24 PM

Subject: Re: [Dercums_Disease] HELP!!!!

On 1/28/08, eibrinkjansen <eibrinkjansen@wanadoo.nl> wrote:

Dear friends with DD,

Has anybody kept a copy of Dr Herbst's article for that Endo.Magazine?? I kept it and with my head full of cottonwool I printed it out, sent it to my medical insurance and then pressed the delete button, so the article is gone. It has my pictures in it (63 yr old woman). I tried to find it back on the internet and found out that it is for sale for 35 dollars! I do not have that type of money lying around at the moment, could anybody please sent me a copy please?? email: eibrinkjansen@wanadoo.nl

God bless! Froukje

.

#24520

From: "Karen Herbst" <kaherbst@...>
Date: Mon Jan 28, 2008 4:24 pm
Subject: Re: HELP!!!!

contactforms...

Offline

On 1/28/08, eibrinkjansen <eibrinkjansen@...> wrote:

Dear friends with DD,

Has anybody kept a copy of Dr Herbst's article for that Endo.Magazine?? I kept it and with my head full of cottonwool I printed it out, sent it to my medical insurance and then pressed the delete button, so the article is gone. It has my pictures in it (63 yr old woman). I tried to find it back on the internet and found out that it is for sale for 35 dollars! I do not have that type of money lying around at the moment, could anybody please sent me a copy please?? email: eibrinkjansen@...

God bless! Froukje

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

From: Suzann Cheney

To: Dercums_Disease@yahoogroups.com

Sent: Monday, January 28, 2008 2:04 PM

Subject: RE: [Dercums_Disease] Nerve conduction test..

I have to agree Elaine, I think my test just showed that there was no
nerve damgage according to the test, I seen the written findings yet,
but after going through the pain of some of the test, I'm not sure it
was worth doing either. Didn't tell us if any of the tumors were
pressing my sciatic nerve either which is what we'd hoped it would do,
so I'm back to square one, living with these things in my spine and
constant pain, and still no answers as to which ones are causing the
most problems. So now what? I don't have a clue, I guess just deal
with it like I have been and everyone else does here! Not a very
optimistic future prospect I know, but what else can we do. I don't
know of any imaging tool that will show us what we need to know about
these things and no surgeon will touch those on my spine without knowing
how large they are under the skin and how deep they go, so I guess I
wait for further information from Dr. Herbst or someone that tells me
what I should do next.

Sorry to hear you were in so much pain after your's was done. My legs
hurt the day of the test but he had caused my legs to Charlie horse and
I'm sure my muscles were just not happy. I was ok the next day for the
most part.

Take care and I'm sorry your results sound as though they were no better
than mine.

Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-56225
Tel: (315) 268-6738
Fax: (315) 268-7994

-----Original Message-----
From: Dercums_Disease@yahoogroups.com
[mailto:Dercums_Disease@yahoogroups.com] On Behalf Of elaine103056
Sent: Saturday, January 26, 2008 2:13 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] Nerve conduction test..

Well I had my test Friday and aside from being a little weaker on the
side most affected by lumps , I am normal..haha...The one thing I was
not prepared for was the pain that came AFTER the test..my hands hurt
and my legs hurt..I tried to educate the Dr (actually a student) about
DD but I had forgotten my articles..and since I now stutter when I
converse with anyone Im afraid the information passed her...on my left
arm she put the conductor on a nerve site but there was a lipoma there
and I cant tell you how much pain that caused..I dont think the nerve
tests tell us anything at all..

Yahoo! Groups Links

#24519

From: "eibrinkjansen" <eibrinkjansen@...>
Date: Mon Jan 28, 2008 4:13 pm
Subject: Re: HELP!!!!

eibrinkjansen

Offline

Dear friends with DD,

Has anybody kept a copy of Dr Herbst's article for that Endo.Magazine?? I kept it and with my head full of cottonwool I printed it out, sent it to my medical insurance and then pressed the delete button, so the article is gone. It has my pictures in it (63 yr old woman). I tried to find it back on the internet and found out that it is for sale for 35 dollars! I do not have that type of money lying around at the moment, could anybody please sent me a copy please?? email: eibrinkjansen@...

God bless! Froukje

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

From: Suzann Cheney

To: Dercums_Disease@yahoogroups.com

Sent: Monday, January 28, 2008 2:04 PM

Subject: RE: [Dercums_Disease] Nerve conduction test..

I have to agree Elaine, I think my test just showed that there was no
nerve damgage according to the test, I seen the written findings yet,
but after going through the pain of some of the test, I'm not sure it
was worth doing either. Didn't tell us if any of the tumors were
pressing my sciatic nerve either which is what we'd hoped it would do,
so I'm back to square one, living with these things in my spine and
constant pain, and still no answers as to which ones are causing the
most problems. So now what? I don't have a clue, I guess just deal
with it like I have been and everyone else does here! Not a very
optimistic future prospect I know, but what else can we do. I don't
know of any imaging tool that will show us what we need to know about
these things and no surgeon will touch those on my spine without knowing
how large they are under the skin and how deep they go, so I guess I
wait for further information from Dr. Herbst or someone that tells me
what I should do next.

Sorry to hear you were in so much pain after your's was done. My legs
hurt the day of the test but he had caused my legs to Charlie horse and
I'm sure my muscles were just not happy. I was ok the next day for the
most part.

Take care and I'm sorry your results sound as though they were no better
than mine.

Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-56225
Tel: (315) 268-6738
Fax: (315) 268-7994

-----Original Message-----
From: Dercums_Disease@yahoogroups.com
[mailto:Dercums_Disease@yahoogroups.com] On Behalf Of elaine103056
Sent: Saturday, January 26, 2008 2:13 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] Nerve conduction test..

Well I had my test Friday and aside from being a little weaker on the
side most affected by lumps , I am normal..haha...The one thing I was
not prepared for was the pain that came AFTER the test..my hands hurt
and my legs hurt..I tried to educate the Dr (actually a student) about
DD but I had forgotten my articles..and since I now stutter when I
converse with anyone Im afraid the information passed her...on my left
arm she put the conductor on a nerve site but there was a lipoma there
and I cant tell you how much pain that caused..I dont think the nerve
tests tell us anything at all..

Yahoo! Groups Links

#24518

From: jhelai9@...
Date: Mon Jan 28, 2008 9:35 am
Subject: Re: Nerve conduction test..

elaine103056

Offline

Im in that boat with you...I have a bunch of them on my spine as well.And developed the hump between the shoulders..Lying on that bed was hard...I cant lie on stomach due to large lump in mid section and all the ones on my back prevent me from lying on my back ..both of which I had to do..And the shocks to the nerves left my hands and feet hurting..The needles in the muscle didn't help either. I am however going to get my hernia repaired because when I was lying there it gave me a big problem..and even though my Dr couldn't feel the lump in my foot I KNOW its there due to feeling like Im walking on or standing on a rather large marble all the time, so Im off to a foot specialist.It just feels like Im breaking down physically but I try hard not to let it happen to me mentally..That's another topic for sure...

Start the year off right. Easy ways to stay in shape in the new year.

#24517

From: "Suzann Cheney" <scheney@...>
Date: Mon Jan 28, 2008 1:04 pm
Subject: RE: Nerve conduction test..

suzanncheney

Offline

I have to agree Elaine, I think my test just showed that there was no
nerve damgage according to the test, I seen the written findings yet,
but after going through the pain of some of the test, I'm not sure it
was worth doing either.  Didn't tell us if any of the tumors were
pressing my sciatic nerve either which is what we'd hoped it would do,
so I'm back to square one, living with these things in my spine and
constant pain, and still no answers as to which ones are causing the
most problems.  So now what?  I don't have a clue, I guess just deal
with it like I have been and everyone else does here!  Not a very
optimistic future prospect I know, but what else can we do.  I don't
know of any imaging tool that will show us what we need to know about
these things and no surgeon will touch those on my spine without knowing
how large they are under the skin and how deep they go, so I guess I
wait for further information from Dr. Herbst or someone that tells me
what I should do next.

Sorry to hear you were in so much pain after your's was done.  My legs
hurt the day of the test but he had caused my legs to Charlie horse and
I'm sure my muscles were just not happy.  I was ok the next day for the
most part.

Take care and I'm sorry your results sound as though they were no better
than mine.


Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-56225
Tel: (315) 268-6738
Fax: (315) 268-7994


-----Original Message-----
From: Dercums_Disease@yahoogroups.com
[mailto:Dercums_Disease@yahoogroups.com] On Behalf Of elaine103056
Sent: Saturday, January 26, 2008 2:13 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] Nerve conduction test..

Well I had my test Friday and aside from being a little weaker on the
side most affected by lumps , I am normal..haha...The one thing I was
not prepared for was the pain that came AFTER the test..my hands hurt
and my legs hurt..I tried to educate the Dr (actually a student) about
DD but I had forgotten my articles..and since I now stutter when I
converse with anyone Im afraid the information passed her...on my left
arm she put the conductor on a nerve site but there was a lipoma there
and I cant tell you how much pain that caused..I dont think the nerve
tests tell us anything at all..




Yahoo! Groups Links

#24516

From: jhelai9@...
Date: Sun Jan 27, 2008 5:36 pm
Subject: Re: Nerve conduction test..

elaine103056

Offline

I have not been ultra sounded in my stomach yet but the next Dr appt will be for a foot Dr. it seems as though my Dr cant feel a lump in the ball of my foot but I told him I CAN !!!!! It feels like Im walking on something or that i have something under my foot so it has to either come out or see what the heck it is...and repair of my hernia..I am thinking if they do repair it I want them to look for lipomas and remove them and biopsy them and give me the results...maybe then they wont think I am crazy...

Start the year off right. Easy ways to stay in shape in the new year.

#24515

From: lenightmoods@...
Date: Sun Jan 27, 2008 9:50 pm
Subject: Re: Nerve conduction test..

lenightmoods

Offline

Hello There,

I too had my arm and leg nerve conduction test done and to no avail with any nerve damage showing up. I am losing the use of my left arm none the less! My arm is so weak I can barely use it to type. I lay my hand heel on the computer and just use my fingers because my hand will start shaking if I try to hold it up. My fingers go numb and get cold and my arm aches in spots all the time. I had cortizone shots in my elbow when it was all swollen up and it is all hardened in there now and I think that between that and the lumps pushing on the nerves they get irritated and are even more sensitive and inflammed. It sure seemed like it when she put those needles in them! I told her right where she was putting the electrodes was where it was hurting and sore. Right along the nerve pathways. It seems they are hyper-sensitive if anything but not numb or deadened. She did notice the left wrist is alot smaller than the right one. No ans wer as to why though. I don't know the answer once again, just that it must be something with the DD. I guess it's a good thing that there is no nerve damage showing though. Just another test that doesn't show anything wrong when I know something is not right. This is what is so frustrating about this disease and I hope that someday there will be a way to test and see these things and where there causing problems and we can point to them and say see there it is. Until then, I just have to keep believing in myself and know I'm not crazy.

I also had the lump in my underarm checked out and all they saw was a lymph node so that's all good too. Next week is a stomach ultrasound because I don't feel like eating and the doctor wans an ultrasound just to make sure everythings ok in ther such as liver kidneys etc. I know it is probably just lumps pushing on stomach making me feel full, or something to do with DD but they want to rule out everything else that they know of first. Yep, It is a hassle and very tiring to keep getting tests that don't show anything and yet I just have to keep my chin up and move forward. I am grateful nothing serious has shown up. The Dercum's is enough and it is practically invisible to the Doctors. I did get to inform about 12 people (Drs and Techs and nurses) about Dercum's and theywere all interested and a bit incredulous about it. They were all running around looking it up on computer. Sooo, maybe that was a good thing about all thes e visits to Drs... to pass on the word. Till Later, you all have a Pain free day and I'll be back later.

Davana

-------------- Original message --------------
From: "elaine103056" <jhelai9@...>

Well I had my test Friday and aside from being a little weaker on the
side most affected by lumps , I am normal..haha...The one thing I was
not prepared for was the pain that came AFTER the test..my hands hurt
and my legs hurt..I tried to educate the Dr (actually a student) about
DD but I had forgotten my articles..and since I now stutter when I
converse with anyone Im afraid the information passed her...on my left
arm she put the conductor on a nerve site but there was a lipoma there
and I cant tell you how much pain that caused..I dont think the nerve
tests tell us anything at all..

#24514

From: "elaine103056" <jhelai9@...>
Date: Sat Jan 26, 2008 7:12 pm
Subject: Nerve conduction test..

elaine103056

Offline

Well I had my test Friday and aside from being a little weaker on the
side most affected by lumps , I am normal..haha...The one thing I was
not prepared for was the pain that came AFTER the test..my hands hurt
and my legs hurt..I tried to educate the Dr (actually a student) about
DD but I had forgotten my articles..and since I now stutter when I
converse with anyone Im afraid the information passed her...on my left
arm she put the conductor on a nerve site but there was a lipoma there
and I cant tell you how much pain that caused..I dont think the nerve
tests tell us anything at all..

#24513

From: "Cynthia" <c_prentice2003@...>
Date: Sat Jan 26, 2008 4:55 pm
Subject: Re: Losing Weight

c_prentice2003

Offline

Hi there,

If you have had a definite diagnosis of DD then all I can say is that
it is very unusual - but not unheard of - tolose weight like this.

You really need to get yourself checked for Diabetes, as this can
have this effect on your body - as can other things. A few blood
tests will ptobably help your doctor decide what has caused what
seems to be a lot of weight loss in a short time.

Take care,
Cynthia

--- In Dercums_Disease@yahoogroups.com, "shefox908" <shefox908@...>
wrote:
>
>
> Hi everyone,
>
> For the last 3 months maybe, I have lost 23 pounds. I was gaining
> weight very rapidly and went from 131 to 168 in about two years. I
am
> 5'4" and now weigh 145. I was not trying to lose really, it is just
> that I do not have much of an appitite and I get nausiated alot and
> throw up alot too. Since I have lost all that weight I can honestly
> say that I am not nearly as stiff as I was before and that is a
good
> thing. But the bad thing is that it seems that the fat I lost was
the
> normal fat and that normal fat helped cushion the tumors and the
> abnormal globular fat that is painful. So now when I sit, take a
> bath, walk, stand, you name it, there is so much more pain. It's
> getting a little scary now because I cannot control my weight loss
at
> all.
>
> Is there anyone out there who can shed some light on what is going
on
> with me now? If it is what I think it is, if it is something that
> might upset another reader, please e-mail me privately. Someone has
> got to know something.
>
> Sherry
>

#24512

From: "Cynthia" <c_prentice2003@...>
Date: Sat Jan 26, 2008 4:48 pm
Subject: Judy Re: Pain and heat anyone????

c_prentice2003

Offline

Hi there,

I agree with Carole, although I find hot, humid climates very
difficult, I absolutely love a warm, long bath which seems to loosen
up all my painful muscles and joints - even if the effect does not
last for hours, just before bed it allows me to slip into a restful
sleep.

Strangely enough, I do not find the cold so bad - perhaps less so
than the heat but in Britain - even in Scotland, we rarely go below
freezing so I can't really judge next to those of you who live in
freezing temperatures.

Oh to be painfree - even for a short while......

Cynthia


--- In Dercums_Disease@yahoogroups.com, "frincess51" <frincess51@...>
wrote:
>
> Judy,
> I have to respectfully disagree with your advice not to use
heat!
> I think it is an individual thing, so they should try both and see
> what works best for them. Generally for me, heat helps Dercum's
pain
> and ice makes it worse. I only use ice if I have a sprained ankle,
> bruise,etc. immediately after the injury to reduce the inflammation
> and swelling. Glad the ice works so well for you with DD!
> Take care,
> Carole
>
> --- In Dercums_Disease@yahoogroups.com, "Judy" <Ldyauburnfn11@>
> wrote:
> >
> > That is common...where there are lumps there is usually heat. And
> > don't use a heating pad for pain! I was doing that and Judi and
some
> > of the others warned me against it. It aggravates the nerves
around
> > the lump and makes it worse, actually. I tried it and switched to
> ice
> > packs. Ordered a huge one off the internet that is made to go
around
> > the waist for back pain. It helped a bunch, but since it is
winter,
> I
> > seem to be cold and freezing in between hot flashes and drenching
> > sweats, so I don't use the ice! I think I would die! I go through
2
> > and 3 changes of clothes at night, get the sheets wet and move to
> the
> > couch every night lately!!! And I went through menopause 2 1/2
years
> > ago!  Have you read Dr Herbst article yet? It explains the heat
> > issue.I am in the worse flair ever right now...full moon + low
> > pressure systems = fibromyalgia and A TERRIBLE DD FLAIR!
> >
> > Judy
> >
> >
> > --- In Dercums_Disease@yahoogroups.com, "elaine103056" <jhelai9@>
> > wrote:
> > >
> > > I amaze myself with the never ending amount of questions I have
> but I
> > > need answers...I had alot of pain in areas where there is a
lump
> or
> > > near a lump..and in these areas I had alot of heat...does
nayone
> have
> > > this happen and does it mean the lump is growing,or forming or
> just
> > > being active???? Just one of a thousand questions I have...and
> need
> > > answers to but have no Drs here in my town who know a thing
about
> DD...
> > >
> >
>

Reply | Forward | Messages in this Topic (9)

#24511

From: "Cynthia" <c_prentice2003@...>
Date: Sat Jan 26, 2008 4:48 pm
Subject: Judy Re: Pain and heat anyone????

c_prentice2003

Offline

Hi there,

I agree with Carole, although I find hot, humid climates very
difficult, I absolutely love a warm, long bath which seems to loosen
up all my painful muscles and joints - even if the effect does not
last for hours, just before bed it allows me to slip into a restful
sleep.

Strangely enough, I do not find the cold so bad - perhaps less so
than the heat but in Britain - even in Scotland, we rarely go below
freezing so I can't really judge next to those of you who live in
freezing temperatures.

Oh to be painfree - even for a short while......

Cynthia


--- In Dercums_Disease@yahoogroups.com, "frincess51" <frincess51@...>
wrote:
>
> Judy,
> I have to respectfully disagree with your advice not to use
heat!
> I think it is an individual thing, so they should try both and see
> what works best for them. Generally for me, heat helps Dercum's
pain
> and ice makes it worse. I only use ice if I have a sprained ankle,
> bruise,etc. immediately after the injury to reduce the inflammation
> and swelling. Glad the ice works so well for you with DD!
> Take care,
> Carole
>
> --- In Dercums_Disease@yahoogroups.com, "Judy" <Ldyauburnfn11@>
> wrote:
> >
> > That is common...where there are lumps there is usually heat. And
> > don't use a heating pad for pain! I was doing that and Judi and
some
> > of the others warned me against it. It aggravates the nerves
around
> > the lump and makes it worse, actually. I tried it and switched to
> ice
> > packs. Ordered a huge one off the internet that is made to go
around
> > the waist for back pain. It helped a bunch, but since it is
winter,
> I
> > seem to be cold and freezing in between hot flashes and drenching
> > sweats, so I don't use the ice! I think I would die! I go through
2
> > and 3 changes of clothes at night, get the sheets wet and move to
> the
> > couch every night lately!!! And I went through menopause 2 1/2
years
> > ago!  Have you read Dr Herbst article yet? It explains the heat
> > issue.I am in the worse flair ever right now...full moon + low
> > pressure systems = fibromyalgia and A TERRIBLE DD FLAIR!
> >
> > Judy
> >
> >
> > --- In Dercums_Disease@yahoogroups.com, "elaine103056" <jhelai9@>
> > wrote:
> > >
> > > I amaze myself with the never ending amount of questions I have
> but I
> > > need answers...I had alot of pain in areas where there is a
lump
> or
> > > near a lump..and in these areas I had alot of heat...does
nayone
> have
> > > this happen and does it mean the lump is growing,or forming or
> just
> > > being active???? Just one of a thousand questions I have...and
> need
> > > answers to but have no Drs here in my town who know a thing
about
> DD...
> > >
> >
>

Reply | Forward | Messages in this Topic (9)

#24510

From: "shefox908" <shefox908@...>
Date: Fri Jan 25, 2008 9:59 pm
Subject: Losing Weight

shefox908

Offline

Hi everyone,

For the last 3 months maybe, I have lost 23 pounds. I was gaining
weight very rapidly and went from 131 to 168 in about two years. I am
5'4" and now weigh 145. I was not trying to lose really, it is just
that I do not have much of an appitite and I get nausiated alot and
throw up alot too. Since I have lost all that weight I can honestly
say that I am not nearly as stiff as I was before and that is a good
thing. But the bad thing is that it seems that the fat I lost was the
normal fat and that normal fat helped cushion the tumors and the
abnormal globular fat that is painful. So now when I sit, take a
bath, walk, stand, you name it, there is so much more pain. It's
getting a little scary now because I cannot control my weight loss at
all.

Is there anyone out there who can shed some light on what is going on
with me now? If it is what I think it is, if it is something that
might upset another reader, please e-mail me privately. Someone has
got to know something.

Sherry

#24509

From: Betty Huneycutt <stellabluesf@...>
Date: Fri Jan 25, 2008 3:31 pm
Subject: Re: Re: Stressed, How many Drs really

stellabluesf

Offline

Hi Carin:

The best reason to get a diagnosis for me was that I could finally apply for SS disability as I realized I could no longer work. I applied and got it and my daughter who was around 40 applied and got it too. It does help give us a little more credibility with doctors if we have been diagnosed. Otherwise a lot of doctors think we are wackos! If you can afford to go to San Diego you could go see Dr. Herbst as she is our only hero right now. Take Care!

Betty

bao85027 <rbosborne@...> wrote:

--- In Dercums_Disease@yahoogroups.com, "calle_kitten"
<callekitten@...> wrote:
> Why should I go through a financial, physcial and emotional
> nightmare ?? Particularly since there is nothing to be done for this.
> I DONT WANNA !!!! Can anyone provide me with a real reason to do so ?
> Totally stressed out calle//Carin from Phx, AZ

Hi Carin,

It sounds to me like you are close to answering your own question, but
since you asked, I will add my 2 cents.
When I was at the point you are, trying to validate what I knew, I had
a surgery that ended with a respiratory arrest and landed me in the CCU
and telemetry units for four days. I was evaluated by all of the
specialities and not one of them came up with anything new. End result
was that I didn't tolerate anesthesia and pain meds very well (in other
words I am a cheap date). After that I was still seeking and spent some
time going to a rheumatologist. That experience was awful. The doctor
was not unkind, but he was not empathetic either. And based on the sad
things that those docs see, I am sure I came across as needy. There is
no test as you say, and I look OK even when I feel awful. That is the
problem in a nut shell. On the other hand, it is important not to get
so discouraged that you neglect other aspects of your health. It is
easy to just "chalk it up to the Dercum's".

Follow your heart and if you need to take a break from all of this, do
so. I remember in a recent post your spouse declared a lump free zone,
or something like that. The constant vigilance and reminders of how we
feel take a toll. It is hard not to get depressed and going to doctors
is exhausting. I am turning into the expert at "awareness/avoidance"
and "diversion/distraction". I pick and choose my activities carefully
and most of the time I can keep that feeling of frustration at bay.
When I can't, I have a little pity party, but the operative word is
little. I try not to let this thing run me.

So, no answers to your questions here, just lots of empathy. I do feel
your pain!

Keep posting, it is a great outlet for us all!
Bev, in cloudy Maricopa Arizona

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

Reply | Forward | Messages in this Topic (8)

#24508

From: "Renee' Rohde" <raenjad@...>
Date: Fri Jan 25, 2008 5:09 am
Subject: Re: personal Q, but it's bothering me.

rockin_robin...

Offline