This must be what I have. Does anyone else have so many that you gave up the count ?

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sierrasusieq
This must be what I have. Does anyone else have so many that you gave up the count ?

I have so many lipomas now that I dont think I can count. I also have this sort of give up fealing about having them removed. My surgeon will do 3-5 at a time in his office with local numbing. But, Now days I can not decide which ones to remove because I seem to be growing them like crazy and they are on most parts of my body. The majority being arms and thighs. But, I also have a few on stomach and rear .By the way , I am NOT overweight so it is not gaining weight that is causing them.

 At this time I have a series of them on my left arm. Mostly marble or smaller size but there are so many of them around my elbow that it is starting to hurt and I can feal them all the time. I think some of them are in or wrapped around muscle? So, what to do at this point ?? anyone else here have this many??? I had my first lipoma in my early 20's but for some reason have gotten tons more in my 50's . Has anyone had a large number at a time surgically removed. As in more then 20? I imagine that would be tough.

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Laura Steffen
Feeling better...
For those of you suffering with all of these lumps as I am, please know that I have been working with a holistic doctor for almost 2 years now. I have seen a tremendous change in my body's ability to cope with all of these lumps. My stiffness has seemed to almost disappear, I do not have trouble walking as I once did. Cleaning out the body from the many, many toxins it is exposed to has helped a great deal. My fingers do not hurt nearly as much as they once did, and sometimes I think they are actually shrinking! They seem to be getting flatter. Yes, I have some growing around/in my elbow area, and wish they could be removed but I have heard too many times that they can grow back... Dr Karen Herbst, now in Arizona, is doing governmental research on these conditions. I will hopefully be seeing her soon. I live in New York. Anyone live around here? Basically, I felt so weighed down from all of my lumps that I decided to think about something else to save my sanity. Once in a while it creeps up on me, and I need to push it away, but I find that helping others is giving me a sense of peace. I do not want to focus on these lumps too much, as it can be consuming. Life is too short, and I believe there are far worse situations than mine. These lumps will not stop me from doing the things that I feel, with my whole heart and soul, are important to humanity. We are here to help one another. Someone needs you. Helping someone else will lift your soul. And I am not talking about others with lumps. Maybe our lumps can take us past ourselves, because honestly, it is hard to think about them!!! I would rather put my own energy into something positive, into a different kind of growth!!! :)
Saintbass44
Saintbass44's picture
lipomas
Thank you for this valuable information. I read this before and same thing...many of us are predisposed to them. My grandma had many of them but I am much bigger than she was an surely have more fat so I have a least 30 of them on my stomach that need to be removed in time. Surgeons? General surgeons are good at taking them out but really bad at stitching them up. Thanks to my age I am beyond having to look like an model so I dont really care who takes them out just as long as those that hurt are removed. It sucks gang..it really does. What makes me happy? in a bad but good way? I'm not alone. Have a good day. D
D
Saintbass44
Saintbass44's picture
your lipomas
I feel your pain and I too begin to have these things growing now in my legs ( in my groin area) Having them taken out from your groin are painful because its tender there. Most of my lipomas on my stomach hurt bad. Some taken out were 8cm in size. When they press against areas of soft tissue they hurt even more. By the photo you have here I dont think you look disfugured at all. These things are irritated by certain foods and instead of fat growing where most people get fat these find little pockets in your body and grow there. Doctors wont research them because for the most part they are not considered dangerous or cancerous. So...why spend the money and time studying them? It would be nice that they did so we can find a way to stop them from growing. I hate mine. I dont take my shirt off at the beach anymore because they look awful. Dont worry about not being that young beauty...you're fine. What i would do is find the things that bother them the most and avoid eating that stuff. Hang in there...I am. D
D
Saintbass44
Saintbass44's picture
Many...and I mean many...
Hi. I just joined here and see that I am not alone. I have many lipomas and some that were so big that after time I had to get them taken out. So far? 66 have been taken out. What kills me is that I just had 11 taken out ten days ago and like clockwork it seems where one was taken out? There is one under the healing scar. I cannot seem to understand why I have so many but I am at the point of giving up having them removed. The three in my thigh hurt when I drive but its those on the stomach and chest that kill me the most. Its looks like I was in a knife fight my scars are so many. The problem is that without them being cancerous they arent studied it seems. My doctor says they are hereditary and yes, my brothers have one or two as did my Grandmother but me? I have so many that I if if get any removed there is always one to takes its place. Distraught? Yep...I am at the point where I have no idea what to do other than having them taken out. Which...btw...as some of you know can be painful. My arms had some where my elbow bends and it was taken out. Guess what? there is another one there taking its place. Im tired of having these taken out and I know my General surgeon hates doing them but because I have so many? I dont know where to start myself as to what ones stay and what ones go. Help....I cant take this stuff anymore and I feel like I am hopelessly going to be in pain forever. D
D
rvnut2
read my post...hope it helps
read my post...hope it helps
rvnut2
Elaine....read my post
Elaine....read my post below...hope it helps
rvnut2
Here's some facts to help you...
Regarding Lipomas…PLEASE READ…as a former Med student with a pretty good medical background, here’s what I’ve learned about them: First...theyre more common than you think...lots of people have them. There is a huge misunderstanding by a lot of people as to what causes them and how to treat and prevent them. Juice fasts, creams and lotions will not help. There’s a lot of “snake oil” out there regarding lipoma “treatments with pills and vitamins. I myself take a few supplements but in no way do I believe they will help my lipomas. The cause of lipomas starts most likely with a genetic predisposition to having them…and then how many you get may vary from person to person. They may be a bit similar to bumpy “Keloid” skin scarring seen with some people, but in fat cells. If you have more than a few lipomas, candidly ask your closet relatives if they have any lipomas (you may need to describe to them what a lipoma is). Remember though, a person with extra body fat may not notice if they have 1 or 2 since they often hide in those areas (hips, belly buttocks), but it often runs in families. I do believe that one external trigger can be previous trauma to the site where the lipoma later forms. There are studies that also suggest this. I have been in a lot of contact sports so I’ve seen the cause and effect personally in certain places on my body. So getting hit on your thigh, or bumping your hip very hard on something could be a trigger. Keep a frozen gel ice pack (from any drug store)in your frig (or a bag of frozen peas) and use immediately on any injury to reduce any inflammatory response which might be involved in triggering lipomas. There is some loose evidence that eating Crimini or Portello mushrooms and/or Green tea may slow lipoma growth, but don’t count on seeing anything noticeable. THE BEST treatment for lipomas is to have a good PLASTIC SURGEON remove them under local anesthetic…NOT a regular surgeon. Ladies especially...that way, no Frankenstein scars. The shot hurts a bit, but it’s the worst part. It shouldn’t cost you more than $300-400 per lipoma removal, and really it should be less. A good hearted plastic surgeon should know they make their money on nose & boob jobs. They should be masters at keeping the scarring and appearance as best it can be. Check their reviews before choosing one, and if your insurance can cover any of it. Be sure to ask him/her about how to care for it afterwards and follow his instructions to the letter. Keep the wound and scar OUT OF THE SUN for 6 months minimum. I recommend 3M Micropore tape very highly to cover the wound afterwards. Do this and your scar will be amazingly barely noticeable and you will be ecstatic. Be sure to have the lipoma biopsied by the doctor. It might be $100-200 more but it is important. This is where they check the lipoma carefully to make sure it is benign (not cancerous)…even though far more than 99% of lipomas are NOT cancerous…always best to check. There are no studies linking them to cancer, but there are a couple of rare disease associated with them. Remember though, more than 99% people that have lipomas dont have these diseases......Well, Looks like its time for me to make another appointment…a couple more of those buggers are popping up. Just get them removed as described and youll be much happier with your appearance. Hope this helps someone!
Ben_Moro
You just fine
Hi, First of all, you look amazingly beautiful :) I have multiple lipomas too, and i've been living with them since i was 17, am 34 now. some doctors told me that they might be some sort of cancer, so i have seen some bad days because of those suckers. But anyways, as you said, our condition might be frustrating, but one thing that i do and helps me greatly, is when i think of people that suffer from fatal diseases such as cancer. The pain, the sufferance ... that they have to go through makes me feel petty for them and makes me forget or neglect how serious my issue is. Well, i would like to thank all people who write in this forum, your contributions are a treasure. Keep it up Girl, you're doing just fine :) Ben,
LiviGrace51091
LiviGrace51091's picture
Elaine
Hi! I am in the US, to be specific I am in the state of Tennessee. I see what you are saying about looking at things that do not belong, and how it is human nature to inquire about it. I have just been dealing with these 'lumps' since i was 11. I never got to have that time of young beauty because I have always had these terrible lumps and bumps that have caused me nothing but pain in my heart. I want to know what causes them, like you have said in another post. Why me and why not the person standing next to me. I have never met someone in my entire life that has seen anything like what I have. My doctor told me i was most definitely. The fact that it is not under insurance for some people blows my mind. I have so many questions in my head about them. WHY wont doctors research them more to find out the cause? They may not be a thing that will kill you, but the torture i face everyday for being disfigured and deformed could truly make someone want to kill themselves. Mine seemed to have switched from growing on my stomach to on my back, and i have recently started to notice near my female region. I just want them to stop growing. I want someone to help me. ): Im so very thankful to share with people that can understand what I am dealing with. If anything that helps more then any of you will ever know.
elaine plackett
Laura, Hi, Elaine here. Sorry
Laura, Hi, Elaine here. Sorry I have taken so long to get back to you, life is crazy here! :-) Firstly, FML or Dercums, I only know as much about either as you, what I've read on this site. Where you would go for clarification I have no idea. Dercums sounds painful, and is maybe the hereditary one? Secondly, the stiffness, you don't mention where this stiffness is? I have had awful hips for over ten years, and was told is was 'early onset osteoarthritis' I don't think that is what I have, after a couple of really painful years, I have managed to hold my own, but do have trouble getting up once I'm down. Thirdly, have had the arm thing, right arm was worst, I eventually went private (I'm in the UK - You?) to an osteopath, who diagnosed 'Thorasic Outlet/Output Syndrome'. A simple test, he held the pulse in my wrist and raised my arm, once raised I lost the pulse and with it the nerves. The problem lies around the shoulder/neck area, and can be caused by RSI from lifting or holding the arms above a desk etc, or an extra cervical rib, (present from birth)either way the compression causes the problems, worth getting it checked out though Laura, have no idea if it is related to the lumps or weather it is an independent anomally. I found that it is often worse in the mornings, depending how you sleep/head position. If you can stretch out your neck area, and hang the arms down, it often relieves it. It is so frustrating not having anywhere reliable to go for info or help. Unfortunately there seems to be very little advice from any quarter. Like you I'm just greatfull for this site, although all it proves is that none of us are alone with this problem.
elaine,devon
roisterboy
Edited comment
Thanks! My email has so much spam anyway, it wouldn't matter.
admin
edited comment
Welcome to the site roisterboy. Your comment was edited to remove your email address and replaced with a link to your contact page. Please be careful about posting your email address publicly on the web as it will open your email account to SPAM.
roisterboy
Haven't lost count, but scared I will.
Hello. I am new to this site. I began growing Lipomas in my 20s. I now have 40 to 50. Most of them are on my legs, a couple on my back, ass, stomach, and forearms. I am disgusted by them and I am beginning to hate how I look. I am tall, slender, and working on getting back in shape. In fact, I just ran 5 miles tonight! :). I have spoken with numerous doctors, and they all say the same thing. My mother wants me to see a holistic doctor, but the doctor demands I get off of my anxiety medicine that I have been on for years. Which brings up a question; how many of you have been on anti-depressants long term? Could anti-depressants cause lipomas? I never drank in high school, a little in college. Actually a year ago is when I begin drinking more than I ever have before. I usually have three to four beers on Friday nights. That's pretty much it. So I really don't think alcohol contributes to my growths. Like everyone on here, I am desperate for a cure. I wish I could do something to melt them away, but it seems there is no hope. If any of you would like to chat via email or text, please email me here. I would love to vent and share stories. It would be nice to talk to someone who is going through the same struggle. Thanks! Stephen
Laura Steffen
Joining the club
Hi Elaine, I think you have such a great attitude! I am 53, with many many lumps. I would love to distinguish if this is FML or Dercum's if it really matters any. The stiffness is difficult when I try to get up in front of my class while I am teaching. Circulation is terrible, especially when I arise. My right arm especially is numb when I first wake up. I do hope that this doesn't become debilitating as I need to continue to work for many, many years. I have an 8 yr old, and need to be around for her, in many ways. I would love to get a diagnosis for sure, although I wonder how accurate any of it is. There is so much unknown yet. Would love to keep chatting as no one understands what this is like. Laura
elaine plackett
LiviGrace
Hello there, You don't say where you are? I am in England, reading your story made me think of myself at your age. I am now 52. Although there are some cultural differences, rest assured you will be loved for being you, by a lovely man who knows a beautiful woman when he sees one, (lumps or not) We all have doubts about our body image, but if you think of all the people you know and love, they all will have features of some kind that you may find unattractive on a stranger, the fact you know them, and their characters well means you see beyond that, to the stuff of soul that really matters. Age is a factor too, but you and your onlookers will mature, trust me. Don't get me wrong, I have good and bad days even now, often attributable to my mood at the time. If i am having a confident time i will jump into a swimsuit and fling myself about the pool/sea/water slides etc. And if people look, then they look. It is human nature to look at anything unusual, to try and understand it, to check if its a threat or not, that is a built in instinct like say, fight or flight. If you were out shopping in a huge city, and spotted a cow strolling along the road, you would look eh? its in the wrong environment, out of place. If it was a tiger, you would look again, its in the wrong environment, out of place, and you would assess that it was a threat. (and run I hope! :-) ) Yes LiviGrace, you will have down days, who doesn't, but rest assured you will have a great life, love your happy days, and yes you will be loved by a man. heres wishing you all the very best.
elaine,devon
LiviGrace51091
LiviGrace51091's picture
my story.
I'm new to this, I ran across this forum and couldn't be more thrilled to have some place to go and have people understand my problems. I am 21 years old and going into my senior year of college. I have been dealing with lipomatosis since I was in 6th grade, so that would put me at 11 years old when this started. I have had over 20 surgeries in the past 10 years for the lipomas. I have had between 4 to 500 surgically extracted, if not more. Mine tend to grow mostly on my trunk(stomach & back) but recently my underarms have become a site of growth, as well as my chest. I have been fortunate enough to not have them grow on arms or legs, although i believe smaller ones have started to appear, i just have not had them confirmed. In the last surgery experience i had one the size of a large golf ball was removed from my neck, first one ever there. Also when i was in my junior year of high school i had a tumor the size of a softball growing inside my organs, which I had removed laproscopicly. I struggle with this each and every single day... things i cant control and the terrible body image that I have of myself. My parents even went so far as to get me a plastic surgeon who performed a tummy tuck on me after removing hundreds in a 4 hour time span while i was a sophomore in high school. Yes it helped and helped the way I perceived myself but not to the extent that I wished, I still had many more. I had the same surgery 4 times, being cut from one hip to the other. I feel like a terrible person for feeling bad for myself because some people have life threatening problems and i get by with just a "deformation." I try to enjoy life but I love being on the water and when I put myself in a bathing suit I subject myself to ridicule, judgments, and humiliation when people look at me like I just robbed a bank simply because I have the scars and the lumps. I struggle with the thoughts that no man will ever love me the way I want to be loved. Does anyone have any advice for me? Would you recommend seeing a body image therapist? I just cant live with the thought that they will continue to grow until I pass, I just can not cope with that and I feel like I am fighting a never ending battle.
Kurt1963
Nice (in some respects) to find others with this afflication!
I stumbled across this site while desperately searching for ways to cope with my lipomas. Wow - I had no idea so many people were in this same situation! I'm 48 and had my first lipoma appear when I was in college. I was at home on Christmas break and mentioned it to my dad - who promptly freaked out and took me to the ER! The doc took about a 5 second look at it and said it was a lipoma. Not a big deal and nothing to worry about. Fast forward to the present and I've had so many surgeries I can't count them (at least 10). Half of these were under anesthesia where the surgeon took out about 30 at a time. The last time the surgeon told me I was his all time record in lipoma removal in one surgery. Great. Glad to have that trophy! I have them on my arms, legs and stomach. Mostly on my arms now. What's strange is that they seem to have quit growing on my legs, but they are now growing like weeds on my arms. Has anyone ever encountered that - where they seem to stop in one part of the body and keep growing on a different part? I'm also wondering if anyone has noticed that new ones appear right after a surgery in a different place? For example, I just had about 25 taken off my arms. It seems like not a month later I was growing a ton of them back on my arms again! I'm wondering if taking them out means that new ones will appear faster? Just curious if anyone has experienced that. If that's the case, then I'll probably just quit the surgeries except for any that get big. My arms are starting to get noticeably scarred.
roby2010
lipoma pattern
same here, gave up on counting, just depresses me more. mine are duplicated almost identical on each arm and leg, stopped counting a while back. I am 36 now, I have removed around 32 of these bastards from my thighs and arms, over the years. Its funny you think you have picked the biggest ones and once surgery is done I look again, I think why didn't I take that one out , they just seem to tag in new recruits all the time. Its almost like when the bigger ones are removed there is more supply for the little guys to start growing. I have tried following with no results for me 1) not drinking alcohol 2) taking betaglucan 3) low fat diet 4) exercise I am very fit and do 4 days of cross fit training a week, eat healthy. I am currently trying turmeric tablets and apple cider vinegar (google turmeric lipoma), I will do that for 3 to 5 month see how I go but I am almost at the point where I need to go for another round of surgery. Its best solution I think for me, only issue is bit of pain and being out of action for a 4 weeks while everything heals, the scars don't bother me I think they look much better than the lumps. gets depressing at times, but you gotta play the cards you are dealt in this life, it could be a lot of worse.
elaine plackett
lumps
have just read all your comments, and can see now there are several various forms of lipoma conditions. Nicole, your comments are very honest, thank you for that, i too work hard physically for a farm in devon, had a great body, and it just gave way to this..... it only takes one lump on your arm to give it the appearance of disfigurement..... couldl i just ask you about the treatment you refer to in your post, MLD ? and what it involves, I am in UK so there maybe a difference in the name? Shame we don't live closer, would whip round for a cuppa and a chat, I have met only one other person with 'lumps' - a man, he has a lot less than me, but they follow a similar pattern in as much as they are mainly on his forearms and thighs at the moment (mine initially started to grow there) . Other than that i am politely looked at as some freek. when a new lump forms, it is really small and unattached in such a way that for several weeks i am able to chase it around just below the skin with my nail, it can travel for several inches depending on the surrounding tissue joins. Then it anchors itself and away it grows. Gail - yes i have had about ten lumps cut from each forearm at the same time, as they sit just below the skin the surgery is not as invasive as perhaps it might be for something sited deep in the tissue. the largest lump on the inside of my wrist was the size of say, a goose egg, and of a similar shape. I still have the scars, 6 years later. Surgery is no longer available for this as it is considered purely cosmetic now. We have the national health service, but you can not pick and choose what you have done, this is purely down to your doctor to refer you, so regardless of what you may need, the final decision lays with them, and classification and legislation. When I first went to the doctors with concerns and lumps I was told "some people just get them" well I want to know why some people just get them, why do i get them and the next person does not? What is happening in my body that is not happening in the next persons body? Or, what is not happening in my body that maybe should be happening? The wanting to know and understand the condition is becoming as intrusive as the lumps themselves. It's driving me nutts!! so little info !!!
elaine,devon
elaine plackett
tooooooo many to count
wow! just found this site, thought i was the only person in the world with multiple lumps! Yes I have so many I have given up counting, I did sort of do a very rough estimate, probably 300-500, some groups of smaller lumps forming one larger one. I had some of the larger ones removed from both forearms under a general (knocked out for the surgery) but they do not cover that any more under national health. I am in my 50's now (52) and gained so many more, mainly stomach, I think hitting the menopause sped up the whole thing. Don't think it is related to diet, genetic? not known to be anywhere else in the family ever, not sure what to think. Personally am exhausted trying to phathem it out! Started out thinking of it as a type of glorified cellulite? thought maybe livers inability to cope with 'something', a particular/combination of food stuff/s. Had a liver function test (blood test)and my levels of 'serum alkaline phosphatase' were slightly low, and i was told it wasn't a problem, then i thought of two parallel lines, if you move one very slightly, over a distance they end up miles apart, (I know it's whacky :-) )so, how long have my levels been a little lower than they should be, and over time is there an accumulative effect? who knows? no one it would appear? Then I thought 'ase' is an enzyme i think, so have tried to absorb various relevant sections of enzyme books, what did i learn i hear you ask :-) I have learned that I would need a brain the size of a hot air balloon to store all the bits of info, and a phD in chemistry at least!! :-) I am not medically trained, ( in case you hadn't guessed!) My gut instinct is still that it is related to enzymes some how, and may even be something soooo simple we'll all be gobsmacked! Well, wouldn't that be nice !!! Is there anyone out there knows of any research going on ??? As it isn't acute enough to kill people (as in the case of a heart attack) then i don't suppose there is any funding for research ?? But I do know that my body, with all it's lumps is trying to tell me it is struggling with something.....
elaine,devon
squaldo
too many to count
Yup. I couldn't possibly count the ever-increasing number of lipomas I have, in my thighs and hips, arms, breasts, elbows as you have pointed out, abdomen, on my rib cage, in my shins and calves, knees both in front and behinds, ankles, even on the tops of my feet. I have so many I can't even count the number in one spot. A couple of years ago I was so frustrated by my doctors' (yes, plural possessive,) inability to recognize what I was trying to get them to grasp, that not only was there something wrong but that it had a name, I finally went to see Dr. Karen Herbst who diagnosed me with adiposis dolorosa or Dercum's disease, with lipedema and lipolymphedema. At that time I had a lot of lipomas but now it is just ridiculous the number of lipomas has multiplied beyond belief. I cannot afford to go see Dr. Herbst again, not now at least since I have become completely disabled and have no income and I have exhaustively researched my conditions so that I could get the help I need from medical professionals. If I could have lipomas removed I would have this done via liposuction. Liposuction not only removed more of the lipomas but it means fewer excision sites. Lipomas tend to re-grow at excisions sites and I can vouch for this fact having had a biopsy of tissue beneath my right knee and the subsequent increase in lipomas as we as having surgery to release a nerve entrapment at my elbow and having lipomas develop there afterward. Personally I do not see the point in having only a few of my lipomas removed as there are so many that are painful I am going to try to find a way to raise enough money to have the liposuction I really need. I did not start out overweight in fact I was in terrific shape, muscular, strong, very physically active. I now am at least 70 pounds heavier due to the growth of this abnormal fat, the Dercum's disease and the lipedema have destroyed my previously attractive body and I am so disgusted by my appearance I wouldn't be caught dead in anything short of a muu muu!! I have developed a number of autoimmune diseases and the fatigue I experience is chronic, I could easily sleep up to 20 hours a day. I require a lot of pain medication as well due to the pain from the lipedema lipolymphedema and many of the lipomas are painful. There is now stress on my joints from the extra weight, and for while I was in so much pain and so depressed that I wasn't able to exercise at all but I finally forced myself to begin walking last December and can now at least take a walk with my dog each day. Yoga helps too and a mini-trampoline is excellent for "rebounding" which forces the calf pump to work. This is important for the lipolymphedema. A result of the increased pressure from the lipomas and lipedema crushed my lymphatics which is how the lipolymphedema came about. I have to use a home compression unit to control this painful type of edema. It replicates manual lymphatic drainage massage which is what I was seeking a referral to a therapist for initially and needed the diagnosis of Dercum's disease from Dr. Herbst in order to convince my physician and Medicaid that it was needed. It is essential for me to control the pain from this disease. I would suggest that you visit this website http://www.lipomadoc.org/ It is Dr. Herbst's and she is one of only a very few who are doing research and treating fat disorders, she understands Dercum's and FML better than anyone else. I was hit hard with these associated diseases and they have altered my life in really horrible ways but at least I know what is wrong now. Doctors are completely ignorant when it comes to these diseases and they do not want to learn about them, especially from their patients. The Fat Disorder Research Society (FDRS) in conjunction with Dr. Herbst is working on a pamphlet for patients and doctors which will help patients with fat disorders get the help they need with less delay and with less disbelief by doctors about these conditions. Another very informative and accurate source for information is available at the following address. http://emedicine.medscape.com/article/1082083-overview I wish you luck with the lipoma removal. I wish I could have mine removed but it is going to cost several thousand dollars to have the liposuction I need. Oh, by the way I am not really overweight, I am not fat, it is the lipomas and lipedema, abnormal fat cells that have taken over and it is like wearing a painful fat suit.I can see the muscle underneath, I know my body and it is under all of this horribly painful and diseased fat that has developed and that I cannot stop from developing. Someday I will be able to have this medical procedure done, I know it will allow me to have less pain and less disability but it is considered a cosmetic procedure at present, which is absolutely would not be for me. If someone would have told me I would be disabled with a fat disorder I would have told them they were crazy, I had a very nice body and vanity aside, I think this is my worst fear come to life. I hate fat, I hate looking fat and going from a size 6 to a size 16 in less than 3 years time no matter what I did I couldn't stop this from happening. Well, I probably wrote too much here but oh well, it is cathartic. Best of luck, Nicole
Nicole
ethen
Multiple-but Homepathy offering hope
Read my other posts, I don't have 50 of them...But I hold around 20 of them But 20 came down to 18 and most of them are shrinking and are soft due to constant homeopathy treatment. What i read from most homeo doctors is Rule # 1: Never go for surgery as it will spoil the show and multiply them at a faster rate. (I am not sure how far that is correct) Rule # 2: Have paitence in treatment as this will treat your body condition and root cause of Lipoma.
squaldo
removal of lipomas

Oh, and I eat a very healthy diet, grow most of my own produce, raise my own hens for their eggs, which I don't eat many of, eat only organic and locally grown foods, eat mostly fish, vegetables, fruits, lots of water, one cup of coffee per day, I don't drink, I was told I am really only 20 pounds overweight, the rest is this diseased, toxic fat that continues to grow no matter what i do. It is genetic, passed from grandmother-mother-daughter, and my mom had this, my greatgrandmother too, I didn't know my randmother as she died very young. I know this will kill me, even if not the actual fatty deposits and lipomas, the pain, the destruction of a normal life, the inability to exercise as it causes inflammation and my lymphatic system is ruined from the weight of this lipedemic fat, and my death will likely be at my own hand, when i can no longer find value in my life, when I am totally unable to do anything i want and need to do. I know this sounds dramatic, but it is not, it is only practical for me. I have lost everything in my life that has mattered to me, unable to do the things I love to do. Lying down all day with my feet elevated is not an option yet it is what I have been doing for about 4 years. I am not yet 49. I can no longer be the artist I was, can not work in my garden, cannot even take my dog for a short walk.

My diet was and is stellar, i was in great shape, it hit me hard and fast, it is genetic and unavoidable if it is in your genes. I am hauling around an extra 80 pounds of toxic fat, it is hard on my spine and joints, I cannot diet or exercise this fat away, and believe me i have tried. I had a lovely body. Now I wear long loose dresses to hide my body, and because wearing clothing is so very painful.

Yes, this will kill me, if not directly then indirectly by destroying the quality of my life.

Oh well. I had much more planned for myself but I had a great 42 years. Now i will just try to manage this as best as i an, but I cannot see living like this, knowing it will only get much worse for me. Maybe research and science will find a way to treat this disease, but not in my lifetime I don't think. And now since my finances have been completely depleted, I couldn't pay for it anyway! Social Security disability has denied me benefits for years, and now if I ever do win it will be SSi, not SSD, and will be about $600 per month. Who can manage on that?

Oh well. Disease does not discriminate.

Nicole
squaldo
removal of lipomas

I have hundreds if not thousands of lipomas. I wasn't overweight a couple of years ago when this started becoming a serious problem for me, and it quickly turned into full blown adiposis dolorosa, or FML, and piedema, and lipo-lymphedema, Dercum's disease. having lipomas removed is often worse than leaving them alone, unless a nerve or tendon is being impinged, it may be better to not remove them because if not completely removed, if even a microscopic bit of the growth remains, more can grow from this. These can be imbedded within the muscle too, and having these removed is often necessary. I have more daily, I cannot count tnem, they are likely in the thousands. Some are big, like a golf ball, some are very tiny like a large grain of sand. They are everywhere, sparing my face and scalp but this could change. Just a couple of years ago i was in great physical shape, weighed 125 pounds of solid muscle, and today I weigh 210 pounds, and nothing I have tried has resulted in more than a couple of pounds in weight loss. It is genetic in nature, and I have been assured by more than one specialist that this would have happened no matter what, it is nothing that i could have stopped from happening. I thought it was something i did, having over-used my body doing very demanding and physical work, but having a delayed dignosis because no doctor would take the literature and descriptions of this condition and see that it was what I was being affected by, so treatment, in the form of MLD, came late, and a secondary lymphatic condition developed, which might not have had I had timely treatment. I am now completely disabled, unable to even stand for more than 15 minutes, and I have to take pain medicnes that I hate to control the unbearable pain, and nerve pain medication as well. It became very depressing, and I am a good natured person, able to make the best of a bad situation but this has really gotten to me. The quality of my life has deteriorated, and I am not going to get any better, so really, this is a bad situation. I have learned that certain hormonal conditions, like that of pre-menopause or menopause, can trigger an increase in lipomas or of fat deposits, when a condition such as FML or Dercum's is present.

As far as having these things removed, liposuction by a person skilled and familiar with these conditions may be a better option for removal of lipomas when surgical removal becomes excessive. My lipomas grew back after removal, more than were removed initially. I cannot have more removed via surgery because it would mean cutting open every inch of my flesh to get to them, even in my breasts.

The type of liposuction that is recommended is Water-assisted liposuction, which needs to be done in a vertical rather than horizontal method, in order to preserve lymphatcs which can easily be disturbed or destroyed with liposuction. This method is expensive, is not performed in many places but in the future I am certain it will be much more in use that older, less effective methods.

Life with lipomas and rare fat disorders is a drag, is depressing, is not what I planned for! I am trying hard to cope with this but I cannot see how this will work out for me, my life has been destroyed by the pain, loss of function and difigurement caused by these conditions.

anyway......

Nicole
gailrainey
too many to count

I too have too many to count, mostly on my thighs but on my arms, in my breast (which causes problems with annual mammograms), on my butt, etc.   I started in the 50's.  My dermatologist says cutting them out would be useless and leave scars.  the ones around my elbow are getting in the way when I bend my elbow so I will get them removed when they are bigger.  Some on my thighs are black and blue and getting pretty large.  They use to look like cellulite but are getting too big to resemble it now.  They hurt when I touch them or press on them or press on them against something else.  I am overweight by about 30 lbs, am 60 years old, eat well, but  I do drink some alcohol.   My brother has them too but not as many.  My mother had them as bad and me.  My greatgrandmother had them so bad she always wore long dresses even in the roaring 30's I've been told.  when she died, the family said it was her legs that killed her because they hurt so bad and made her fall over.   Has any one been successful in getting them cut out  without leaving scars?

Gail Rainey
sierrasusieq
Hi Gail, so, just wonderring.

Hi Gail, so, just wonderring. How old are you ? Have you gotten more of them at a certain age?? Do you eat healthy? Are you overweight? Do you drink alcohol?

Truthfully , I think they are mostly genetic. Dont think diet causes them alltho I suppose certain things can make more come on ?? Diet, alcohol, stress???? Don't know.

gailrainey
so many lipomas

I've got so many on the inside of my thighs that counting is not an option!

Gail Rainey
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