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Lipomatosis Survey

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.

Moderator: matt

ryan

Re: Lipomatosis Survey

Post by ryan » Sun Mar 03, 2013 2:16 am

What does Dr. Herbst recommend for FML, if you don't mind me asking?
LumpyJo

Re: Lipomatosis Survey

Post by LumpyJo » Wed Apr 03, 2013 7:12 am

1. Is anyone in your family affected by FML besides you?

My sister who is 3 yrs younger, had only one so far on upper back, removed due to pain. Younger brother has several. Mother said my (deceased) dad had a few on chest area. Unknown if any other relatives have any.

2. How old were you when you got your first lipoma and did they proliferate fast?

Noticed my first one in late 30's just below ribcage. Had it removed during gastric bypass. Then a few yrs later started noticing more forming. I am now 52 and they just keep multiplying every year. No huge ones, range from rice sized to marble size. Most are painful if pressed on, 10% are the painless, rubbery lipomas and others are the painful ones I consider part of Dercum's Disease.

3. How many lipomas do you have right now? (And how old are you right now?)

I am 52, female, and now have hundreds. About 5-10 on lower arms, 10-20 on upper arms, 2-5 in breasts, 50 or so in ribcage/abdomen area, 30 or so in back, 5-10 in buttocks, 50 or more in each thigh, and now in past year or so noticed them now in knee to ankle area about 10-20. Most are so small (rice sized) and very painful especially in back and thighs.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

Over a year ago, had 4 removed from back by dermatologists. Was a painful experience and left scars. Have now noticed 1 or 2 returned and now have many more in back area.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

None so far. Wanted to try the Noni Juice/Grape Seed Extract regiment, but I just could not stay with it long enough. May try again as some have had success with lumps decreasing in size and number. Regiment based on theory of it having flushing toxins from the body or something like that.

Also will add that I am overweight, which "hides" most of the lumps. Otherwise, if I had little body fat and still had these same lipomas, they would be more visible. I guess I am keeping a layer of fat to help hide them unfortunately :(
Guest

Re: Lipomatosis Survey

Post by Guest » Thu Jul 04, 2013 1:59 am

1. Is anyone in your family affected by FML besides you?


1. I have far more and far larger than anyone in my family. My 2 sisters don't have them (although one of them did die from leukemia at 23). My mother may have one or two tiny ones. My father said he's never seen or heard of anything like this (except when bitten by rats? I think he means the bubonic plague). According to him no one in his extended family has them (my paternal grandparents died before I was born). And - I'm quite sure that I'm not adopted and both of these are my real parents. I look almost perfectly in between the two of them.

2. How old were you when you got your first lipoma and did they proliferate fast?

Don't know anyone else with lipomatosis - especially this many. That's why I'm glad to have found this board. I remember feeling my first lipoma on the front-inside of my upper thigh when I was sitting on the bus riding home from high school. I must have been 15-17 years old. It was kind of an embarrassing area so I ignored it. I noticed my 2nd one on my right forearm when I was 17-18; it was about 1-2cm diameter and seemed to just 'pop up out of nowhere' (I remember showing my friends and asking them 'what do you think'... they said 'you should probably get that checked out...'). By the time I saw a doctor and later a specialist I was about 22. By then I had 5-10 that I noticed. I've had a total of 6 big ones and one small one removed. They've continued to proliferate but I've been too busy dealing with more important life problems until now.

3. How many lipomas do you have right now? (And how old are you right now?)

I am almost 34.

Somewhere around 40-50, I estimate. The vast majority (90%+)in my arms and lower torso. A few in upper legs/hip area. No noticeable ones on head/neck/upper torso/groin or genital areas/hands/feet/legs mid-thigh or lower.

My left forearm looks grotesque because of the size and number of lipomas there, but most of the others are somewhat unnoticeable unless you are looking for them. My wife/kids laugh with me when I flex my biceps "Those aren't really muscles they're just your fat lumps"

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

I have had 6 larger ones removed and one small one (the surgeon called the small one a freebie it was right next to a big one) over 2 years (3 at a time). Generally happy with the result with two caveats: 1) scarring is annoying 2) the pain/sensitivity isn't completely gone despite removal of the lipoma. Because of those two reasons I didn't bother getting any more removed for a long time but the pain of all of them is getting overwhelming now and I need to get more removed. Furthermore; I live in Ontario, Canada, and when I got them removed initially the cost was covered by government health insurance but now it is considered a cosmetic procedure.

Out of the 6 spots they were removed from only 1 has a lipoma now (amazing, since my arms are pretty much covered in lipomas, essentially)

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

No. I am generally a skeptic of alternative treatments. I have tried various things my mother gave me to 'cure' them; to no effect. Maybe because I needed to BELIEVE first, lol.

6. Are you male or female?

Male
sachinsudhakar
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Number of lipomas: 100+
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Re: Lipomatosis Survey

Post by sachinsudhakar » Sun Jul 14, 2013 7:22 pm

1. Is anyone in your family affected by FML besides you?
>>My father and mother have just couple of lopomas. My brother (only sibling) has reported none.

2. How old were you when you got your first lipoma and did they proliferate fast?
>> when i was 15 years i noticed my first lipoma on my right hand fore arm. They increases when I started to work as a software engineer(22 years old).


3. How many lipomas do you have right now? (And how old are you right now?)
>> 80+ and I am 29 years old now


4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?
>> NA

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?
>> Yes I tried a homeapathic treatment for nealry 4 months. No benefit. I dont trust homeopathy any more.

6. Are you male or female?
>>Male
Crazyrage
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Joined: Tue Feb 11, 2014 5:33 pm
Number of lipomas: 61-100
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Re: Lipomatosis Survey

Post by Crazyrage » Tue Feb 11, 2014 5:58 pm

1. Is anyone in your family affected by FML besides you?

My twin brother; not nearly as sever. They annoy him less and he has way less than I do. He has even reduced them by a very strict diet and work out regime.

Mom, Dad, Aunts. Uncles, Grand Parents as far as I'm aware of is NO.

2. How old were you when you got your first lipoma and did they proliferate fast?

I was 14 years old. It was just after we moved far away from where I grew up. Around the same time I started to have very frequent urination that I still have to this day. When I say frequent I mean once an hour, I'm lucky if I can make two full hours. I'm also guaranteed to go at least once in the night if not as many as 3-4 times. This is when my allergies kicked in as well. I've not been able to smell in a very long time do to my allergies at times it can affect my breathing as well.

I get normally 2-5 new ones in about a month or so, then nothing for several months. They are on my stomach area, chest, biceps, back, shoulders, and started in the last few years to grow on my thighs. When I eat certain foods they get agitated. Normally it's very greasy foods or very fatty foods. I will feel them under my skin very annoyed and making their presence known. It will last for about 1-3 hours before it stops. Happens about 2-3 times a week.

3. How many lipomas do you have right now? (And how old are you right now?)

roughly 50-65, hard to get an accurate count I'm 30 next month.

6. Are you male or female?

MALE

More about me.
I've from the United States of America. I have an Exercise Sciences Degree. I have been an athlete all my life. Very physically fit. Never over weight and very strong. My diet has been very poor over my life, but that I blame on my parents for helping me develop bad habits from an early age that are hard to break. I have noticed exercise to be efficient in slowing the rate at which they grow and how often I get them.

I struggle with it running in families. I believe it has a lot to do with the chemicals(I should say poisons) are body are absorbing and ingesting. The family groups showing that is shows up in others in their family are just absorbing and ingesting the same thing as the other individuals. That's my main theory. I have one other theory; Allergic reaction to something that we are eating. I also believe it could be a stress response of the body.
Mmm
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Number of lipomas: 1
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Re: Lipomatosis Survey

Post by Mmm » Mon May 26, 2014 5:20 pm

1. Is anyone in your family affected by FML besides you?

Father had a few small ones

Did one of your parents have it, what about grandparents, aunts, uncles? Siblings, cousins? Great grandparents? Were there any differences regarding the severity of lipomatosis? Did someone get just a few lipomas, while others got tens or hundreds? Were there any offspring of people with FML who didn't get FML themselves?

Do not know

2. How old were you when you got your first lipoma and did they proliferate fast?

Before 30 years old

Did you get many in your 20s, 30s, or 40s, 50s? Did they grow in size fast or slowly? Was there a time when the number of lipomas suddenly escalated?

The first one I still have in my thigh.



3. How many lipomas do you have right now? (And how old are you right now?)

I am 49. I have one now that I got around 30 . It was the first. The past year it has been growing and I am trying different treatments. I am not totally sure if it is a lipoma because my doctor refused to look at it last year when it changed.

How should I get my family doctor to look at my thigh tumor? I would feel better if it was checked with an ultrasound.

If the answer is no, you can skip these two:
4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

I had a giant lipoma surgically removed about 5 years ago. I got it around 40 years old. I had it for about 7 years and the. It started growing and causing pain.

What really burns me about the whole deal: why I could. It get surgery for it when it was small.
When I first got it, it was like an insect bite that did not heal and got bigger. Doctor said it was a cyst and referred to surgeon who would remove it. No ultrasound. Surgeon looked at it and said it was a giant lipoma. She said cosmetic only so payment was $400(?) and it might not grow, the scar would be more noticeable. I was broke and plus it was between my shoulder blades only about 2 cm from my spine. She seemed young and I was distrusting that I could not get some serious nerve damage.

Fast forward 7 years. It grew suddenly large and it hurt when driving, sitting, lying down. Went to doctor (different family md). Sent for ultrasound and then to surgeon who would operate in one week. I delayed a few weeks. The ultrasound said well differentiated mature lipase tissue and 10cm x 8 x 5. The surgeon said 0.5% cancer risk.

The lipoma got out in one piece and it was huge. They put it in a quart size jar. No cancer and I had not been worried though. I have a 5 in he scar on my back. There is still a hole in my back and lump of ?fluid there that is the same size that the tumor was. So no I was not pleased with the surgery.

What really did not make me pleased was the first surgeon did not tell me that a lipoma has to be a minimum size for public insurance to cover the removal. So I would have got it done before it started hurting me so much and made a huge hole. I found that info on the internet myself. She also never told me a cancer risk.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

I am trying frankincense and castor oil packs and chickweed ointment on the thigh tumor. It seems to get swollen if I get hot.

6. Are you male or female?. Female
dannyg
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Number of lipomas: 11-30
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Re: Lipomatosis Survey

Post by dannyg » Sat May 31, 2014 12:54 am

Hello everyone!
First time poster here but this forum has been a vital resource for my lipoma research over the past several months.

1. Is anyone in your family affected by FML besides you?

My mom and brother both have a few very small lipomas. No one else in my family, as far as I know, has lipomas.

2. How old were you when you got your first lipoma and did they proliferate fast?

I got my first lipoma around the age 16-17 [I'm 25 now]. It started out small enough that I payed no attention to it for a couple years until I noticed it slowllyyy growing. It went from less than pea-size to the size its stopped at about 2-3 cm in diameter. This is my largest lipoma and it's under my right bicep. This single lipoma slowly proliferated for about 5-6 years. Then I noticed more and more proliferate in a relatively fast amount of time, maybe I've just never noticed the other ones, but it seems from age 20 - 23 i went from 1 to ~16. They are all relatively small, but I'm in decent shape so they are visible on me. Over the past 2 years, I've been very conscious of what I put in my body and my wife and I are very very healthy, she is heavily into health and wellness of many different forms. I do lack proper amounts exercise in my busy life however, but that's my current hurdle.

3. How many lipomas do you have right now? (And how old are you right now?)

Around 16 that i can feel at the surface of my skin. I'm 25 years old.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

I drank a glass of turmeric in warm milk every day for 6 months [about 2 years ago], and noticed no change, so I stopped. Other than that I've just been committed to eating as healthy as I can and making sure everything I put in or on my body is organic, natural, etc. I do exercise and workout, but not as much as I could or should. New lipomas have seemed to stop showing up now, but the current lipomas are still there, same size.

6. Are you male or female?

male

7. Other things worth noting:

I once had a lipoma on my left forearm, it started small, but over the course of a weekend, I remember it swelling to maybe 1 cm in diameter. It was really bothering me [aesthetically] so I messed around with it frequently. Squeezed the hell out of it and pushed it around my skin just to see what would happen. This caused some pain just from the pressure of my squeezing and bruised the area for a while. Then one morning I woke up and the lump was gone... weird. Maybe I just irritated the area so much that the lipoma decided to move, or my fudging around with it detached it from the skin and now it's roaming free in my body.... I don't know, but about a year later I noticed one of similar size pop up about 4 inches away on the same arm, maybe that's him again.

Also, I have 4 lipomas on my back that are symmetrical, it's very interesting. They are in pretty annoying spots too which cause a little pain when sitting certain ways. I have a couple very small ones on the back of my head as well that are symmetrical.

I'd also like to give a little background on my lifestyles, because it very blatantly correlates with my lipoma occurrences:
Growing up, I was a very very active kid. Constantly playing outside, very into sports, skating, mountain biking and cycling.... always moving. Then around 16-17 years old I really began focusing on my art-work for college and got into computer games as well. I was still eating healthy, but physical activity had pretty much left my lifestyle. I then got accepted into art college and the school work had me working all day and all night for 4 month terms at a time. I was living alone now and was too lazy, tired and busy to cook so I ate the school cafeteria food most of the time... not very healthy. So as you can see, my lifestyle took a dramatic shift at around 16 years old: no more healthy eating and no more physical activity. I gained about 20-40 lbs during this period as well, fluctuating between 180 and 200 lbs. It's also worth mentioning that art college took a massive toll on me emotionally which led to me dropping out after 3 years. So, i went from a very healthy, highly active and happy kid to eating unhealthy food, lack of exercise and depressed.

Now, I'm back in pretty good shape, eating very healthy and a happy person. But these initial Lipomas have not changed and I'm very committed to figuring out how to rid my body of these lipomas.

Anyways, nice to meet you all!
U2Joshua
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Re: Lipomatosis Survey

Post by U2Joshua » Thu Jul 17, 2014 7:55 pm

1. Is anyone in your family affected by FML besides you?

Yes. Father, Mother and one of my two sisters. My father has only a couple on his triceps. My mother only a couple (unknown location, specifically), and my sister had one behind her knee - surgically removed.

2. How old were you when you got your first lipoma and did they proliferate fast?

Early 20's. They have continued to proliferate, slowly and steadily, since.

No one else in my family has experienced the same onslaught of proliferation as I have.

3. How many lipomas do you have right now? (And how old are you right now?)

Approximately 20. I am 37 years old.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

Yes. I had two removed - one on my upper left forearm, and one on the center of my stomach, a couple of inches above my navel.

I am displeased with the scarring, and after a couple of years I have recurrence. It's difficult to tell if it's a direct recurrence, per se, versus a new one forming in the same general vicinity, but I do have one or two new growths in the same region on my stomach, and two new growths within an inch or two of where the one was removed on my forearm.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

Not specifically. I have always defaulted in my thinking to believe that most health-related issues are correlative to diet and exercise. I have been an elite endurance athlete for much of my life, achieving National Champion status in Triathlon, including competing in the Hawaii Ironman Triathlon World Championships. Whereas, I have historically always considered myself to be fit and healthy, I now view those two facets are related, but separate.

It may be worth noting that I wrapped up my professional level career at age 23, which was around the time that my first lipoma appeared. There was about a 7-year period, between my mid-20's to my early 30's, where I let my health and fitness decline while in graduate school, working full time, and having just gotten married. I did gain at one point up to 45 pounds above my competitive athletic weight. I have since dropped 20 of those pounds, and have an average "healthy" athletic build at this point in my life.

I have regularly taken vitamin and mineral supplements. I eat most classes of foods (not a vegetarian, or any other eliminative diet). I would say my eating habits are above average, including a good mix of lean meats, (largely organic) fruits and vegetables, and I limit processed foods. Currently, I exercise 3 - 5 times per week, including strength and endurance training, and occasionally compete in a triathlon, half marathon or marathon.

In recent months I have begun thinking outside the box, and am now dabbling with a couple of supplements to see if any effect may be observed on my lipomas, or any other of several nagging "non-threatening" health challenges.

A. Apple Cider Vinegar (Bragg's 100% Organic, with The Mother)
B. Pycnogenol (Pine Tree Bark Extract)
C. Calcium Bentonite (Living Clay) - internal detox

I will report any notable results.

6. Are you male or female?

Male
Guest

Re: Lipomatosis Survey

Post by Guest » Sat Sep 20, 2014 10:55 pm

1. Is anyone in your family affected by FML besides you?

My brothers have some but no where near the amount i have. I've had well over 1000 removed surgically and have a couple hundred now.

2. How old were you when you got your first lipoma and did they proliferate fast?

I was 17 -18 when i first noticed it and it was removed. They started slower.. Than sometimes i will have an 'outbreak' and they will pop up everywhere. They are very painful at times (Vascular - connected to veins, arteries, muscles and nerves.

3. How many lipomas do you have right now? (And how old are you right now?)
Over 200 currently (Age 49) and will be having about 50 or so removed surgically this fall.

4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?

Yes, Yes and YES. I have been having surgery for over 20 years to remove them. I'm sure i have a hundred on my stomach alone right now and they HURT ! It hurts when my shirt touches my stomach. (NO, its not Dercums) It's FML. Dignosis - Lipomatosis & Vascular Lipomatosis - FML with chronic pain.


5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?

Tried Vitamins, Water, Ointments, exercises, Herbs, the list goes on.... no relief. Surgery has given me the most relief and don't believe i'd be here if i hadn't had surgery.


I used to go in and have a general anesthetic where the doctor has removed from 50 to 150 at one time. The past 9 years i've been having a local and during the winter months in Wisconsin, i have gone in about ever 2 weeks for around 4-8 months having 4 - 18 removed at each visit.
Ant
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Re: Lipomatosis Survey

Post by Ant » Tue Oct 07, 2014 10:24 pm

1. Is anyone in your family affected by FML besides you?

My brother. My Dad past away over 10 years ago but i believe he had it as well but im not 100%.

2. How old were you when you got your first lipoma and did they proliferate fast?

1 or 2 in late 30s, started popping up all over in my 30s, they tend to have a quick growth spurt with pain and then slow down. Im nearly 40 now and they seem more prolifent now than ever!

3. How many lipomas do you have right now? (And how old are you right now?)
Around 25-30 lipomas, mostly around my waist, ribs and back. I'm 38.

If the answer is no, you can skip these two:
4. Have you had any lipomas surgically removed? Were you happy with the result? Did the lipomas come back?
Yes had 4 lipomas removed. I have light skin so scar tends to take a while to fade (6 months).
The end result is great, but it does take a while to heal (with me anyway). Im constantly developing more lipomas so im not sure if removing them is going to be the answer but i might have no choice as alternatives dont seem to be forthcoming.

5. Have you tried any other treatments for you lipomas? Were they effective, were you happy with the result?
I tried no/low carbs for a month and it seemed to be preventing more growth, but i havent really tested that theory to be able to say 100% for definate. As im writing this now im going to try it again and see.

6. Are you male or female?
male

I would like to include some more questions here if thats ok...

>>> Matt could you make this into some kind of web form rather than a forum post, it would probably get more people posting, especially if it was quick and would make it easier to find any trends <<<

7. Do you excercise? how much do you weigh?
I am 6'1, weigh around 12 stone and excercise once/twice a week.

8. Where are your lipomas?
Mostly around my ribcage and back. Have a 3 or 4 on my thighs as well.

9. Do you think you have a lot of phlegm?
I seem to have quite a lot of phlegm in the mornings, people often say i should give up the fags because of my cough even though i dont smoke.
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