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Definition For Familial Multiple Lipomatosis

Familial multiple lipomatosis is a rare disease. With this condition you get multiple lipomas (dozens or hundreds) all over your body. Lipomas are usually encapsulated.

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matt
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Re: Definition For Familial Multiple Lipomatosis

Post by matt » Tue Apr 10, 2012 10:49 am

Thank you Jimbo for your post!

I especially liked what you said in the last chapter. Well put!
Hi I'm Matt - the creator and owner of this site. I have dozens of small nasty lipomas all over. I've tried many treatments including surgery and Lipostabil injections. See my lipoma prevention supplement recommendations and please consider donating a small amount via PayPal (click the Donate button) to keep this site up and running. Thx!
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Re: Definition For Familial Multiple Lipomatosis

Post by caribou » Tue Apr 10, 2012 1:40 pm

I used to be about 118 Kgs, but in the last 3 years I have lost a significant amount of weight due to exercise and dieting I now weigh 78 Kgs. My body fat percentage has been reduced significantly as I have progressed with my weight loss. Although my lumps have not gone, they are significantly smaller, and far less noticeable – some have almost disappeared completely.

I have always had problems maintaining a healthy weight, and I am convinced that FML has played a part in this – although I now I recognise that I was overeating, no one could accuse me of over eating or being sedentary now as I count my food intake and exercise most days on a rowing machine. One thing I have noticed though is that although I do have an extensive exercise routine I still have problems shifting body fat, and no matter how hard I try I cannot get my body fat to drop below 16 to 18%, I gain weight very quickly even though my overall calorie intake would be less than recommended daily allowances.
Congrats on your weight loss! I don't know if FML would affect the tendency to gain weight. My father and his mother (who both have lipomatosis) have had overweight issues and a clear tendency to gain weight easily, but then my uncle also has lipomatosis and he's been thin as a rail all his life. So it might have some effect, but it could be just other genetic factors.

You might want to read about bodyfat setpoint and food reward if you're still having trouble maintaining your weight, I at least find it an interesting theory. I think my father's lipomas also shrunk in size (or appeared to shrink at least) when he lost weight, so I'm not at all sure that losing weight would make lipomas look more prominent as people say.

Anyway, thank you for your post, it was an interesting read. Please stick around. :)
BM

Re: Definition For Familial Multiple Lipomatosis

Post by BM » Mon Apr 16, 2012 6:44 am

Hello everybody,
I have that FML and in my case it is inherited and I believe that is caused by alcohol consumption mostly. I wanted to point out that I have both encapsulated and those that are not encapsulated lipomas and that seems to me implies that it can be several causes for lipomas. I stared last week to use DCA (dichloroacetic acid) but it does not seem to me to work, at least not on those big ones. I also heard that exist both lipomas caused by "mitochondrial diseases" and those that have nothing to do with that and maybe that is why it does not work in may case. What i want to say is that if somebody got lipomas inherited from their mother lineage maybe it could work. If somebody tried DCA I would appreciate response on her/his experience as I will later on.
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matt
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Re: Definition For Familial Multiple Lipomatosis

Post by matt » Mon Apr 16, 2012 6:53 am

Hi BM!

Thanks for posting. I have not heard about dichloroacetic acid as a possible treatment for lipomatosis. How did you come up with this? Could you please start a new thread under the treatments and cures about dichloroacetic acid and explain some more?

Thanks!
Hi I'm Matt - the creator and owner of this site. I have dozens of small nasty lipomas all over. I've tried many treatments including surgery and Lipostabil injections. See my lipoma prevention supplement recommendations and please consider donating a small amount via PayPal (click the Donate button) to keep this site up and running. Thx!
dkaye

Re: Definition For Familial Multiple Lipomatosis

Post by dkaye » Tue May 15, 2012 11:53 am

Good morning all. I can't believe after all these years I have found a name. I am a 62 year old female with multiple lipomas. My first occurred when I was 30. I was not concerned since my father already had several, and although they were uncomfortable, he had never considered them dangerous. In intervening years they keep coming. When they first appear they are sore, and feel almost like they are tangled in the muscle underneath. I have found that when I limit my caffeine, not only do they lose some of their "power", but they even shrink a little. I would have to question the alcohol consumption mentioned by a previous poster, since I have never had a drink and come from a non drinking family. Both of my brothers and my sister also have multiple lipomas, although our mother does not. My two older sons do/did not have them. My oldest son died 2 years ago at 38 from appendix cancer. But... I received a phone call from my 31 year old daughter just last week who has developed her first one. I will continue to check the posts. Thank you all for sharing.
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Re: Definition For Familial Multiple Lipomatosis

Post by caribou » Tue May 15, 2012 4:09 pm

Hey, dkaye. :) Do you know how many lipomas you have these days and how big they've grown? I'm just curious to hear as many experiences as possible, especially from females and people who've had their first ones appear relatively late. How long does the phase last when the lipoma feels like it's tangled in the muscle underneath? Days or months or years? Thanks for your reply.
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Re: Definition For Familial Multiple Lipomatosis

Post by GCS » Fri Aug 31, 2012 2:45 pm

Hi all,
Just discovering this site. I'm not sure if I have FML or some other form of Lipoma "disease". As far as I know, no one else in my family has any lipomas. I noticed my first lipoma (on my side just above my bottom left rib) at about 16. It is, I think, my largest at maybe 4-5cm across. Over the years (I'm now 36) I have developed more and more and probably have several dozen now. They are mostly in my forearms and upper legs, but also in my buttocks, abdomen, lower back and upper arms and range in size from maybe 1cm to 5 cm. None of them causes me pain unless they are firmly pressed on (but I think the pain is caused more by underlying nerves than the tumor itself). I have a large one in my forearm which sometimes gets sore from leaning on it while typing, but I am still able to do planks at the gym without discomfort (in the forearm at least, planking is hard!).
I've considered having some of them removed but don't like the idea of going under the knife or of having scars afterwards. Maybe I will do it if one develops that causes real discomfort .
I wonder if anyone here has tried acupuncture or some other eastern treatments with any success.
I also want to encourage people on this forum not to be too self conscious about their lumps. I know it sucks to have them and I also can get very self conscious about my lumpy arms and legs. But actually, I don't think they have ever really affected my interactions with other people. People just don't seem to notice them until I point them out. So from the cosmetic perspective, being lumpy just isn't that big a deal. Ultimately, they don't bother my girlfriend and so they don't bother me. Please do not let this condition interfere with your living life to the fullest. Be lumpy and proud!
Lipomasareannoying

Re: Definition For Familial Multiple Lipomatosis

Post by Lipomasareannoying » Tue Jan 22, 2013 10:58 am

I too started I. My late teens with a few. Now have about 50. Mostly on the trunk, thighs and back. I also feel it has an association with fat deposition. They suck. I had 2 removed long time ago. Some are golf ball in size and I constantly feel myself playing and massaging them. I am going to have more removed. What else do I pay for health insurance for? A plastic surgeon I met with says lipo doesn't work great as they bounce away from the cannula and the newer laser lipo doesn't fully eradicate the capsule - so excision is best option. I am debating about going ahead in maybe a few stages and getting a bunch excised. Thanks for everyone's posts - always good to hear others people's personal perspectives,
donny

Re: Definition For Familial Multiple Lipomatosis

Post by donny » Mon Mar 11, 2013 7:58 pm

This discussion is helpful for me. I have many hundreds of them. Most of them are on my thighs and I had to get 6-8 of them removed several years ago because a few were the size of golf balls. My hands, feet, neck and head are the only areas where I don't have them, although I may have one or two in my neck. I don't think I have any on my chest, but I have some near my ribs, on my sides, and on my back.

The ones in my arms are becoming bigger and I'm now self conscious about wearing t-shirts becaus my forearms are unattractive with multiple large lumps the size of grapes.

I'm 41 years old and have had them since I was 17. The first one that I noticed was after a significant and deep bruise to my thigh from football when I was about 17. I'm not saying that bruising caused it, but my uncle had them just like I have them and he swore that lifting weights caused them and I have always worked out.

I am to the point where I think that I need surgery again, but I honestly have too many to get surgery. I probably need 25 of them removed to make it worth it at this point and I remember that getting 6-8 of them removed was very uncomfortable. Even if I got 20-25 of them removed, I would still have a bunch of them left.

It is funny that some folks have mentioned the link to obesity. I'm not obese because I work out and try to eat right, but I am definitely more chunky than the average man. I would be interested in learning if there is some link and/or if this is an issue with the way that our bodies deal with fat.

This forum is great.
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Re: Definition For Familial Multiple Lipomatosis

Post by Soonerdude » Fri May 31, 2013 2:20 am

Back in 2009, I found out I had Familial Multiple Lipomatosis. With well over 100 lipomas, and some appearing it seemed even overnight, it really freaked me out. I poured through forums like this looking for answers, and I must tell you that at least for me, I did find a permanent solution. No meds, and no crazy natural herbs from India or some crap. Here's what I did. It requires real commitment, however.

(1) Yes, I had to have most of them first surgically removed. I had over 60 of the noticeable ones removed.
(2) As I did this I went on a crazy weight loss plan--strict diet and exercise. Now mind you, I had the 60 removed over the period of many months. So like, about 4 every week. The more weight I lost, you guessed it, it did seem like more would appear or grew. However, that is not true. The more weight you lose the more they will show through the skin. I just would have them removed throughout that year as well. By 2010 I had lost 80 LBS.

3 YEARS LATER, AND NO MORE LIPOMA GROWTH!!! PRAISE GOD!!! Lipoma growth is a one way gate. They grow with weight gain, but they do not shrink with weight loss. So, my plan was twofold: Surgical removals and weight loss. After this, YOU CANNOT YO-YO diet!!! They will grow back with weight gain. Here was my only problem. I got so skinny that I looked kinda sickly, so I took a gamble that I wasn't sure would work, but it has. I knew I could not gain bad weight (fat), but I thought, maybe I could gain good weight (muscle). So, I took up weight training to gain muscle mass. That was 2 years ago and it has worked! Whether you stay skinny, or gain muscle mass, the important thing is to never gain the fat back...ever...again. This has worked for me, and I really hope this will help someone else who is reading this. God bless!
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Re: Definition For Familial Multiple Lipomatosis

Post by matt » Fri May 31, 2013 8:45 am

Thanks for posting. I must ask how do your scarring look? Because often times the scarring is worse than the original lipoma. At least in my case. I still have one scar in my thigh which is red after more than five years. It also spreaded and looks pretty nasty to me.

Saying that I also have scars that have faded away nicely so I guess it's about the location and the person.

Which kind of technique was used to cut out your lipomas? Also have you cut out something from your diet that you ate or drank before?
Hi I'm Matt - the creator and owner of this site. I have dozens of small nasty lipomas all over. I've tried many treatments including surgery and Lipostabil injections. See my lipoma prevention supplement recommendations and please consider donating a small amount via PayPal (click the Donate button) to keep this site up and running. Thx!
changtraisuytinh
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Re: Definition For Familial Multiple Lipomatosis

Post by changtraisuytinh » Tue Dec 17, 2013 8:00 pm

Lipomatosis is believed to be an autosomal dominant condition in which multiple ... Familial multiple lipomatosis...
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David

Re: Definition For Familial Multiple Lipomatosis

Post by David » Sun Apr 27, 2014 12:56 am

I am a 57 year old Caucasian male with hundreds of these limpomas, I just had a huge one removed from my arm today. I have tons on my torso and arms and upper legs. I am very self conscious about them. I am a bit of gym rat (racquetball) and get tired of people asking me what is wrong. I guess I will go the surgery route, as I have many times. I feel badly that I have passed this along to one of my three sons, I had no idea until today that it is hereditary. Oh well, we will all be OK, at least this is not a health risk.
pheny

Re: Definition For Familial Multiple Lipomatosis

Post by pheny » Sun Jul 06, 2014 12:52 am

i am really surprised that you men think the lipomas are ugly. My husband has more than 40 of them and they are over 2cm each and I never noticed them (saw them but did not pay attention) till he told me what they were. Lipoma are not ugly at all unless they are huge to cause deformation of body parts, but the regular one do not cause any bad feeling on women. I promise :P


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