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07/30/2010 12:29 AM

Hello

tyebug
 
Posts: 32
New Member

My name is Cheryl and I believe I have dercum disease. It started around 10 years ago. I had an extreme weight gain over a few months and have been pretty much the same weight for the last four years. I hurt every day, and I have numerous lipomas throughout my body. Mostly on my trunk and some in my limbs as well, the ones in the limbs cause my hands to go numb. I have had several of the lipomas removed related to the pain.

I have taken information about DD to my doctor, actually the last three over ten years. They look at me like I am crazy. They have done a ct scan, colonoscopy, and the stomach one, also numerous blood work. They tell me they are just fatty tumors and should not hurt, they also tell me if I lose weight then the pain will go away. I am depressed and take an anti-depressant and I am so tired all the time, I could sleep anywhere at this point. I am so frustrated!!! Any suggestions? I live in Utah anyone know any doctors here familiar with the disease? Any suggestions will help.

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07/30/2010 05:27 AM
shellbee
shellbee  
Posts: 318
Member

HI tyebug. First, welcome to our group!! We hope that you feel at home here and find our group informative. I am personally not familiar with any doctors in Utah but I am sure someone here might know someone close? Even if you do not have a doctor, you may be able to start some of Dr. Herbst's suggestions on her website. Diet & vitamin supplements does help quite a bit to relieve some of the everyday ouchies. I started the diet before I went to a doctor locally and then to Dr. H. After 2 months, I was feeling much better. Of course, weather does make it worse. BE aware that many doctors just don't know about it because it is so rare (supposedly...personally I think under-diagnosed, and made rampant because of steroids))

Anyway, I don't think anything really helps when the weather shifts for rain... I take antidepressants as well and we all need them sometimes, so you are not alone. Here is Dr. H's website. www.lipomadoc.org You will need firefox to view the suggestions.

Again welcome to our group!


07/30/2010 07:43 AM
keeter

Hi Cheryl!

Welcome to the group! I hope that you feel welcome and find us helpful - if not silly sometimes. I was diagnosed a little over a year ago. Like you mine started long ago but just really burst forth around menopause - and some other high stress events. I had the same experience with doctors discounting it. Once I got diagnosed they each got a letter telling them about it and how they had hurt me.

Anyway... I am in Indiana so can't help with the Utah. I am thinking we have someone in Utah or Idaho so maybe she can help. Dr. Herbst is in california and many people see her for diagnosis. It IS very difficult to find a doctor who doesn't discount DD and is willing to work with you.

Keep chatting with us and we'll help as much as we can. Shelli directed you to Dr. Herbst's site which is what many of us use. Just try one or two things at a time because it is very overwhelming!

Take care,

Diane


07/31/2010 02:05 PM
elliefiona
Posts: 107
Member

Hi. Another welcome. Can't help with the docs, I'm English, but experiencing the same frustrations trying to find someone to diagnose me - or even say no, that's not it!

This place helps you feel believed and more confident about it

Ellie xox


07/31/2010 02:32 PM
keeter

Thanks, Ellie! Glad to see you posting. I've missed you! Smile

Diane


08/01/2010 06:05 AM
elliefiona
Posts: 107
Member

Hey, thanks, lots going on, lots of family needing lots of help, so having to save the spoons for them!! Pacing..... xox

08/01/2010 06:31 AM
jlou
jlou  
Posts: 1235
Member

Ellie - take care of your own. We'll all be here waiting Smile I have been crazy with work and I am hoping that slows down some. I had to drive to Trubull, CT (5 hours of driving) and back on Thursday and my body was in pain that night and Friday. I also have one of my Business Managers who needs to be put back in his place AGAIN (this happens every few months because he never learns). Apparently while I was out of the office on Thursday, not only was he wasting one of my Team members time with a project he should have completed within ten minutes but sat with her for 3.5 days on it and confused the crap out of her, he started talking crap about me to her and she wanted to punch him in the face. Once more I had to go to my manager and ask that she gets our Director involved because he thinks my manager and I are out to get him. I don't have time for these things. I work on my client nationally and I am constantly bombarded with questions from everyone from my client and my brokerage. I have no time to do what I have on my desk. So annoying.

Sorry for my rant. I really just need to reconsider if this job is worth it. The stress is killing me.

Janet


08/01/2010 06:39 PM
keeter

Hey Janet! I'm sorry it's crazy and especially that you have a nutso pain in the butt co-worker! But you asked a very good question - is it worth it? I've been in so many stressful jobs and it has worn on me. This one is finally somewhat calm and steady but I still have had enough. Trying to get to January and then do my best to retire. It will be risky financially but staying there is slowly wearing me down and making me worse. Here's my fun one.... I told my boss - who has been my boss for 5 years - that I want to cut back to 3 days a week for a month because of the heat is really killing me. The first thing she said was "What about Taleo?" (My system.) I've been the only person at the university who knows my job for THREE YEARS and everytime I am going to be gone she worries about it. Has she gotten a backup? Kinda sorta. Did she think of that person? Nope. Then she had the nerve to say "I don't know what you do. Can you make a list?" AGAIN - been my boss for FIVE YEARS! She asks that question at least once a year. Now whose fault is it if she still doesn't know what I do? That makes me feel sooooo good.

Sorry, I'm on a rant, too. Need to go see my doc and talk over revising my FMLA. Not sure yet what I will do.

Janet, take care of you but do think hard about whether or not it's worth it!

Hugs,

Diane


08/02/2010 09:42 AM
jlou
jlou  
Posts: 1235
Member

Thanks, Diane. I know what you are saying too. It is crazy but everyone I work with comes to me for everything and do not use their own brain to figure it out. I told then all that they need to start learning how to do all parts of their jobs because I might not be there for them. I am waiting to hear on the other job in the same company and then I would be above the jerk co-worker!!! HA HA HA. I am having a meeting on it tomorrow with my Director and Manager. He is just never going to change but needs to know he cannot get away with it.

Best wishes in going to 3 days. I hope that helps you out a lot. I have been having some OK days and then suddenly a horrible day right in the middle. Never know when it is going to hit. Once again, you gotta love this disease.

Janet


08/02/2010 07:41 PM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Janet...I can not bring myself to love this horrible disease. When I was working over the years I was asked to write my own job description several times. I think that temperament has an influence on DD. Whatever work I was doing I had to be the best. I had to find new ways of doing things and teach my coworkers. We are all Type A temperaments and so self-driven. Believe me no one is indispensable..your butt is just warming a seat that someone else will inhabit when you leave. It may take 3 butts to replace you but they will!! I gave so much of my precious energy to my jobs. I hope you can retire soon Diane. Life is not so bleak when you don't have to give everything that you have just to go to work. Janet sweetie it is not worth it..believe me. Stress makes us worse. Try to find a job with less stress. Every group of workers has a dead beat...how do they get away with making you do their job for them? I always had to pick up the slack when I worked.

Cheryl...as you can see even the three moderators of this group need support! I am so sorry that you have DD and I am glad that you came to us. We want to show you our compassion and caring. We care so much for each group member. We understand where you are coming from as we all have the same experiences. That is why we have to give each other the will to go on and we share your desire to find help. I hope our posts help you and you can help us! Hugs, Grandma Sylvia

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