MDJunction - People Helping People
 
Ask a Question
01/04/2011 12:50 PM

Lipedema

Margie
Margie  
Posts: 739
Member

I've been doing some reading on lipedema, or lipeodema and realize that so much of the generalized feeling of heaviness and skin tenderness is probably from lipedema and not the actual lipomas, as in dercums. I guess that is why I have been benefiting so very much from the lymphatic drain massage, however the effects are only temporary.

So, here are a few of my questions. I understand that lipedema is not lymphedema and that is a considered a fat disorder.

1. Is lipedema a part of dercum's disease or is it separate and just co-existant?

2. Does everybody with dercums also have some stage of lipedema or can you have one without the other? How many of us have both? I have both however did not see any mention of lipomas or dercum's disease in my lipedema reasearch to date with the exception of Dr. Herbst's site.

3. Also, other than Dr Herbst, what type of doctor would be able to dx lipeodema and is it also considered a rare disorder?

4. One last question, I read an article on Tilly's site that said "by all means avoid being scratched or bitten by a cat." Well, I have two cats, so can anybody expand on this caution? Should I consider adopting them out for health reasons?

Appreciate any info you may have stumbled upon by reading or by experience. I compiling info for my doctor who will hopefully formalize the dercums' dx at the end of January. I want to tackle the lipoma and lipedema issues since they seem to go hand-in-hand and need to know what kind of referral I should ask for. Thanks a bunch.

Margie

Reply

01/04/2011 03:25 PM
scottie47
Posts: 479
Member

Margie, Im as confused as you are about this thing.. Dr. H. diagnosed me with lipedemadercums type II. From what I can understand, according to Dr. H. the lipedema is or should be considered part of DD. Although the two are separate entities.. you can have one without the other.. What makes dercums stand apart are the painful lipomas..I even went so far as to google lipedema vs lymphedema.. They are similar, but not the same thing..Im not really answering your questions so dont pay me any mind!! LOL! But Im trying to get my primary or endocrinologist to refer me to a vascular doctor who is or should be familiar with at least lymphedema.. Im hoping that this doc will at least have heard of lipedema....and can refer me to a therapist who does lymphatic drainage massage and can help me with my compression garments.. I know that people with lymphedema use the compression so....all this is really overwhelming and when you ask a question, you end up having to ask about 10 more! Good luck in your search for answers....

Scottie


01/04/2011 04:35 PM
jlou
jlou  
Posts: 1235
Member

You can have both or just one. I beleive a dermatologist may be able to diagnose but not sure if that is just my dermatologists or all dermatologists. It seems that they know about DD more than any other doctors do. I think there is just so little known about DD to say anything definate though. I did not get the little strings of lipomas in my forearms until this summer. Another thing to look into is scleroderma. That is a tissue connectivity disease and I now know a few people that have DD, lipedema and that as well. That is what my acupuncturist thought I had before we found the info on Dercum's. Some of this stuff is so closely related, there has got to be a bigger picture. I was talking to my mom about autoimmune diseases and how the researchers for each and every autoimmune disease should share their findings because there has must be 1000's of pieces of one big puzzle.

01/04/2011 04:37 PM
Margie
Margie  
Posts: 739
Member

Thanks Scottie! You are right, no easy answers but we'll get there....eventually. I will copy some of the info and take it to my appt at the end of the month as see if this doctor has anything to contribute on the topic.

He's a dermatologist so I can't imagine this is his specialty but being a teaching hospital maybe he knows of someone...who knows someone...and I can get a meaningful referral.

I have all the markers for lipedema so it's pretty much a given, especially since the massage has made such a huge difference in my level of wellness. Once the fluid goes down the texture of my "fat" especially the most affected areas changes and becomes softer. The feelings of being "pressurized", being weighed down plus the heaviness sitting on my chest all improved but within a week or two it all starts back and you can feel each of the symptoms returning.

I guess that is why the compression garments must work to slow down the fluid's return. I was feeling really well for the past few weeks but the pain and swelling are back again with a vengeance and | can't afford another lymphatic drain for a few more weeks. That's why I want a dx so that perhaps I can get more coverage.

As far as the cats, well, I would hate to adopt them out but if this is an immune problem and cats are a specific concern then I would have to consider it because with this illness it's about protecting the health that you have left.

It is overwhelming...so many questions and so few answers...makes it hard to know what to do or where to turn to. Thanks for the encouragement and the reply...let me know if you or anybody else turns up any other details.

Margie


01/04/2011 04:45 PM
Margie
Margie  
Posts: 739
Member

Thanks Janet - that's helpful. The specialist I'm seeing on Jan 31st, has some experience with dercums is a dermatologist so maybe I'll be fortunate and get a double dx.

Is it commonly accepted that dercums is an auto immune disease? I;ll be sure to check out the connectivity issue because I too believe that this is all related. Isn't it strange that these researchers don't get a student somewhere to input all this random info and have the computer search for commonalities and patterns. We can only hope. Thanks again,

Margie


01/04/2011 05:02 PM
keeter

Hey Margie!

I think dermatologists are familiar with Dercum's more because of the lumps. With lumps under the skin you're more likely to get sent to one of them. We have been diagnosed by all kinds of doctors. Mine and Sylvia's are rheumatologists. And mine would say a big NO! to is it accepted as auto immune. It is one of the possibilities but nobody knows for sure. I've been trying to get him to think along that line and see what he can learn.

Regarding the cats.... old wives tale? Haven't heard that one. Mine scratched me on a regular basis and I can't say that I saw a thing change. Where is Tilly's site?

Dr. Herbst told my sister I have lipedema and Dercum's but she only saw me for a few minutes so I'm not sure about that one! But I do also have a lot of lipedema symptoms. So yes, they can be separate but they seem to coexist in many of us.

Sorry we can't give you better answers!

Hugs,

Diane


01/04/2011 05:08 PM
jlou
jlou  
Posts: 1235
Member

No, they have not put DD totally in the autoimmune category but some doctors who have studied it have said it possibly could be. Dr. Herbst made a reference to me that mine seemed to be more from an immune system over stimulated and constantly ready to fight and that is what an autoimmune is. I tend to overheal like most people with autoimmune disorders and my sister has diabetes type and my other sister and daughter have Hashimoto thyroid which both are autoimmune disorders, so it would make the most sense to me that Dercum's is. So, basically Dr. Herbst sees that Dercum's is an autoimmune or genetic connective tissue disorder (she asks if you can pull your skin from your hand or touch your tongue to your nose - these are things I cannot do but show that you may have a tissue connectivity issue). There are just not enough information that is solid out there.

The problem with doctors who are doing research is where the money comes from and if they all got together who would get credit, etc. Not that I am saying there are doctors out there that honestly care and want to help but it is a dog eat dog world out there and in that scenario we are just the fleas on the dog. Dr. Herbst has been trying to reach out to other doctors. She wants the input and wants to truly help us but she is not able to help us without funds but I'll tell you, I have seen her put money from her own pocket into a fundraiser and I have seen her give up a stay in Ireland that she honestly won. I am hoping she gets other doctors to work with her. It is a huge task she took on and like I said she is probably just missing a few pieces from the puzzle and she'd have something big.


01/04/2011 05:17 PM
Margie
Margie  
Posts: 739
Member

Well, if you believe in prayer, please do so for my appt on Jan 31st. This doctor is a prof at a teaching college and in a position to cooridinate information on behalf of Canadians and that would be awesome!

I am taking information about Dr Herbst and her work to the appt with me and hopefully he may have an interest in giving permission to be added to her resource list and recruit some other Canadian Drs. Fingers crossed...

Margie


01/04/2011 08:11 PM
Margie
Margie  
Posts: 739
Member

I just wanted to share this site with anyone interested on additional info on lipedema.

There are other excellent sites but this one seemed especially good as it is easy to understand and also has reference pictures. It is a private website and is available in several different languages. The owner of the site is Tilly Smidt and it's worth the time to check it out as there are lots of practical suggestions and information on compression garments etc.

http://www.tillysmidt.nl/LIPEDEMA%20%20Englisch%20for% 20Lipoedeem.htm

PS There was a reference to "avoid being scratched or bitten by a cat" in one of the articles on this site but I didn't see the medical reference...I'll have to look again. Be Well!


01/05/2011 01:28 AM
scottie47
Posts: 479
Member

Margie, the only thing I know about cat scratches and bites are that they are highly infectious! I dont remember the medical term, but there really is something called 'cat scratch fever.' How that relates to DD or lipedema-another big question! Good luck with your search. Ill see what I can find about that one also.. I refuse to give up Sable. We've had her for 12 years...part of the family.. I would hate to think she was the cause of this illness or contributed to it in any way...

Scottie

Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved