I have dercums. Had a couple of lipomas in my early twenties. Had a few more develop. Deployed to Afghanistan when I was 42. I developed more lipomas during my deployment and many more after returning. I have had 90 removed. I am 50 now and still have many more. Angio lipomas ( more vascular than regular ones) are the ones that tend to be painful. Mental and physical stress cause lots of pain and more lipomas to develop. Try to reduce these factors in your life. I was a Soldier and in very good shape. However I reduced my exercise to light exercise as lactic acid build up causes more lipomas. If you have this disease I feel your pain, literally. I do not take pain medicine now because reducing stress is the best treatment. I tried lots of pain medicines and they had marginal effects if any. I even tried pot. Most doctors have never hear of this disease and you will feel slightly marginalized by their lack of understanding of the disease and it's progression. A dermatologist can usually provide you with a diagnoses. I believe that exposure to JP8 (jet fuel) caused this. Hope this is helpful to you if you have this.
Hi. I believe I have dercums as well. Had a small lump removed in my lower back in my early 20's and didn't seem to have any problems with it. I also had a few more develop during my career but they were more worrisome than bothersome. It was only after I had the series of anthrax jabs in 1999 for Saudi deployment that I started getting more on my lower back which became increasing more painful. I had some surgically removed (general surgery with 2 layers of sutures) in 2018 and they have grown back with a vengeance. They seem to be growing deep inside and are also now climbing up my back. I refuse to have surgery again as I believe scar tissue just adds to the pain. I don't take any medications for pain as I am into more natural healing and my heating pad but am in the process of finding someone who can give me a diagnosis and also looking at different natural treatments. ANYWAY, I have heard that a lot of Gulf War vets have developed these lipomas after taking the anthrax jabs and about to look into it more. I'm hoping to find a blog that will lead me to both. Take good care and thank you for your service and sacrifices.
I have dercums disease and found out when I was 28 but had symptoms long before! I had to move to a state with warmer weather because I cannot take the cold weather! I can no longer take opiates because I need more then will tranquilize a horse but subutex seems to help with the pain and I have been on the same dose for 4 year's! I have been confined to the bed both days and months at a time so I understand the pain with dercums! I also take nerotin with an antidepressant! I am under no circumstances pain free because I think having the expectation of being pain free is unrealistic! I am trying to tell my story and I hope someone finds it helpful dealing with this horrible monster called dercums disease!
I've been vegan for 7 years and had zero lumps when I started then 7 years later I several lumps and just diagnosed with Dercum's and Lipedema. So that's not necessarily true about meat vs no meat
My mother lost 60 ponuds in couple of months through dieting and I think that cause some shock in her body and she got dercums ,I honestly think that's what caused it for her,sometimes extreme diet change can actually mess your body up
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
Same here...my mom had horrible lumps on her arms near joints, and on her hips...but no pain. I have them all over....over 300 of them..with no help in sight. I am on county insurance, and no I e will touch me or help me. I had one dermatologist that dx me. Then the insurance took him away... I am in severe pain every freaking moment. Every time I move, it is worse because I have one large one that wraps around from the spine to the hip to the groin. Yay for me!😞 Trying to keep fighting, but I am so tired...
I know when Lipedema started on me and I have some lipomas too. Have first surgery May 10, 2022 Dr Beidas. I had to have my master gland the pituitary removed in my second surgery for Cushing's disease. The gland pathology had minute cells cuasing over production of cortisol. Up until I was around 40 I was very small, size 5-7. I am on all replacement homrones but it is hard to find a doctor, even an endo to replace a woman's testosterone. Men with low testosterone develop tissue disease, loose and they get fat. That is one hormone I haven't been on very much for 17 years. I am 68 and talking to my doctor about the testosterone this week. I feel there is connection with adipose tissue and Lipedema stage 3 type 4 in me.
I have over 200 knots on my body, with severe debilitating pain. I have been trying to get diagnosed for 8 years with no luck. It can be very discouraging!! Everybody thinks Im crazy.
Amanda Parton I went through exactly what you both have but don't give up because believe it or not one day you will find a doctor who cares enough to do the research they need to do in order to validate you're pain! I understand you're frustrations because it is very discouraging to go to doctor after doctor to no avail and I know sometimes you just want to give up on yourself because you start to feel if you cannot get them to care about you? then why should you care about you? but you must keep fighting! You are not just fighting for yourself! You are also fighting for all the people with dercums disease and helping to bring awareness to this horrible disease so more doctors can learn and understand this disease so they can help others in the future and who knows maybe one day no one will have to go through this misery! like it isn't hard enough having to live with this pain every day? They act like we enjoy going to so many doctors and are only seeking medications or attention! I haven't worked in years and I tell doctors all the time before this i always had two jobs and other then a little pot here and there when I was a teenager I have been drug free so I didn't just wake up one day and say to myself I want to be a jobless drug addict! who does that? I'm in pain gosh dammit! and I am tired of hurting and I want to be heard! I just want one doctor to care enough to do some research on something they haven't heard of! something they don't understand! Until the one day, one actually did and you will too hun!
I've had like 20+ angiolipomas removed since 2003. Some where getting quite large and painful. And mine seemed to form symetrically,if one formed on my right thigh I would find one on my left one. My surgeon told me that she thinks they may be related to an auto immune disorder. I have several other auto immune disorders,one involving my immune system trying to eat my retinas,celiac disease and psoriasis. I was put on the max dosage of cyclosporine and cellcept for my retina disease. Unfortunately I developed neurotoxicity from taking those meds which are actually for organ transplant patients so they don't reject their donated organ. But I'm not sure if this is related but after having all of my angiolipomas removed and being on the anti rejections meds my Dercums seems to have gone dormant. I've had no new angiolipomas since I began taking the max dosage. But I would have to say that I think for Dercums the immune suppressor meds would be like using a bazooka to hunt deer with. They are overkill and not worth the side effects the drugs caused in me.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I've been diagnosed as having Dercum's disease with over 225 angio-lipomas at last count. I did have 21 of the most painful removed. I am in South Carolina, how can I be treated by you?
My friend has been diagnosed with it , she has it on her face , we can’t find anything on the internet about this disease being on the face but her Consultant still thinks it’s Dercums, This disease doesn’t seem to attack the face so what else could it be
I don't know if there is any coalition but I had my gall bladder removed and have crps. I had some lipomas removed but I think I also have dercums, small ones but very painful.
I've had these very painful lipomas for years. They are located around my hips and thighs. I had two removed which was very difficult, the surgeon took 2 hrs trying to get them out of the muscles and nerves they had wrapped around. I do not have a Dx of Dercums disease but have been dx with Lupus and Chrons but wondering if this is the issue to begin with. The lumps hurt so bad, even opioids barely touch the pain. My Drs seem uninterested in me and I don't know where to go from here. The pain is relentless and right now one of those lumps are growing into my hip joint. I'm miserable and I can barely work.
Hi! I was diagnosed with Dercum’s in September by my Rheumatologist. I began feeling a cluster of marble like lumps under the skin above my left hip. The pain was unmanageable and I have a high pain threshold. I also have Mixed Connective Tissue Disease which causes me to be in pain everyday. But back to Dercum’s, I went to the ER where they told me I had internal shingles which is rare but I get the rate stuff (MCTD) do it seemed believable. The more research I did on internal shingles the less I believed I had it. I followed up with my rheumatologist and he and I both said Dercum’s. 3 months later and at that time roughly 75 lipomas I was dx with Dercum’s. Before I was even dx with MCTD I spent 3 years going to doctors who told me theres was nothing wrong or I’m doing this to myself and kept pumping me with pills. Finally I went to rheumatologist I have now and was dx in 1 day. Flash forward to the Dercum’s my primary and 2 general surgeons blew me and my lumps off. Thank god my rheumatologist always works to treat me. So my advice to you is to keep searching for a doctor that will listen and work with you. If you have to explain to a doctor what Dercum’s is like I have done 5 separate times because they’ve never heard of it then you need to get out of there. I think a Rheumatologist would be your best bet. You’re not crazy, you just have an invisible disease and for most people seeing is believing, unfortunately. I hope this helped and I hope you soon find a doctor that understands.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I have been diagnosed with EDS HT (III). I have piezogenic papules on my wrists and feet on compression. I have (this year) developed weight on my abdomin and somewhat on my thighs and gained weight despite eating 1000 or less calories daily, exercise and eating very healthy. My legs and abdomen has become "lumpy", different than celluite, and the skin is tender when touched. No hypothyroidism as of yet. I feel many, many pea size lumps in the abdominal area, some in the legs, more in the abdomen. They are tender on palpation. I have so many symptoms of Dercums, but are very similar to problems seen in EDS as well- crossover symptoms. The geneticist who diagnosed the EDS tells me (without seeing me again- this over email), that my abdominal lumps are the same nodules seen in my feet and wrists-piezogenic. I cannot find anything in medical literature to support that yet. Additionally he has not seen or palpated my lumpy thighs and abdomen. It was see me once, diagnose, and your done. Is that possible? they are piezogenic? Or should I pursue this (my thought). oh, I'm not obese-I am above the weight I feel comfortable with, always been trim. Additionally, I'm on NO pain meds due to having porphyria, but alleve/tylenol. Yes, I hit the motherload of genetic crap.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
@@florencedonald6419 Perhaps you didn’t have Dercum’s 🤷🏽♀️ But don’t go around making such claims if you’re not going to tell others where to look for the info you’re claiming.
Are you completely sure that dercums disease has to be on the chest? I have lipomas all over my wrists, forearms under my arms, thighs, and all throughout my abdomen and all over my back. I can't find help, the tests all point to multiple lipomatosis but this pain is unbearable at times.. I'm also a male and have had it since I was 15 I'm overweight now but when I had it I was a skinny kid. This disease is limited to woman but it's needs to be more.. I had a pain management doctor tell me I couldn't have dd or fibromyalgia because always woman get them..
They can go everywhere ,even inside (around organs)my mom has them on her ribs ,shoulders ,neck ,the most ,and also abdomen,her shoulder is literally immobile because of lipomas
Thanks 👍, I was just wondering cause I can't get a diagnosis, but in her video she says that it is most recognized by the one on your chest but my chest is clear 🤦♂️
@@JayJay-yl2lf the rib cage. Press well around the breasts. I wouldn't be surprised they are there but the breast tissue gets in the way. They seem to be attached to the ribs
I saw this Dr. Karen Herbst and was diagnosed in Oct. made appts with her colleagues for April and Nov. 2020. They sent cancelled appt. notices recently and that they are closing the practice of dealing with Dercums patients entirely - but included recommended alternate dr's. I had some lipomas (6 or 8) removed 25 yrs ago, and the multiples that have come on since are discouraging. taking care of yourself is the key.... which I am not good at. Hang in there.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I have small, hard, pea sized lumps all over my body with a couple larger. I was diagnosed with fibromyalgia. I had 2 mammograms for one larger one, they told me my breast was very lumpy with fat. It's most painful in ribs, hips and thighs. Struggle to walk some days and hurts to breathe. And I really struggle losing weight. Which doctor is best to go to for diagnosis? I gave up going to doctors, but things have progressed now and I don't think I have a choice.
i also have small hard pea sized lumps all over my body too, i thought i was the only one. i also have lumpy fatty breasts. the pain is horrible, but i haven't been diagnosed. i hope you get better and find a good doctor soon :)
@@zannaxz yes, I had a couple mammograms because I was concerned I about the lumps. They told me I have many, but they are benign and just fatty deposits.
I have 100s of lipomas in my right arm, in my thighs and have lumps i m my stomach/ intestine area my mum has histiry of lipomas bejng removed and they grew bavk we bith sleep but are always tired, my mum is niw suffering confusion. Is is thjz dercumz disease we are bith easily bruised slsi.
Karen Herbst: This is Judy Keith and I haven't posted anything in a few years because my Dercums Disease has basically been dormant with small flares and suddenly BOOM! And of all places my head is under attack! I and getting knots all over my head and face and they are painful! And they are coming up everywhere else too like normal. I am having massive chronic migraines, ocular migraines.Have you heard of anyone else having something similar happen to them? Hope you and your family are well!
I dont recommend lipo. Dercums started on my body because of a lipo cosmetic surgery i got done for gynoccomastial. The area where they lipoed started to produce the painful fatty tissue and now its all over my body.
What do you mean ? Did you remove your lipoma just for the sake of cosmetic reason ...do you have any pain in your lipomas before removing them? And many of them you removed?
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
The weight, and diet opinion feel incorrect. I had lipomas even back as a teen with extremely low fat and also very much into athletics. Nothing, no diet etc. ever stopped them from forming.
I've got lumps on my sides, ct scan doesn't show anything, and ultra sound show nothing abnormal. I can feel these knots with my fingers. the pain sucks but the fatigue is and just feeling drained is what is ruining my life. The wont give me pain killers. I dont know what it is, but at this point i just want to be cut open and have them all removed. I have big ones and smaller ones and the big ones get smaller and hurt less somethimes, i have trouble emptying my bladder sometimes. I do eat a clean diet, i only drink water and an occasional apple juice. I have way more bad days than good days lately. if this is dercums, can they be removed? can atleats some of them be removed so i can bend over without pain? im 38. where can i find this white paper????? anyone?
@ The Miracle This is the same thing that has happened to me with CT scans and ultrasound. Showed nothing. But 3 dr's have felt the lumps. Other ppl have felt them. Of course dr's I had been referred to have not been able to feel them because they sink back inside my body. I lost a huge amount of weight. Then these painful and I do mean horribly painful lumps started showing up. I have more weight yet to loose but can't even bend over due to the pain from lumps much less exercise. Some dr's think all I want are pain killers! Totally not true!! I want to be fixed! I want to be able to bend and exercise again. I want pain free without pain pills! All I take is tylenol now because I don't like the way dr's started to question me on why I needed something for pain! Just want the lumps removed for good and my life back.
I couldn't get through the first couple of minutes. Women this. Women that. I had this same problem looking up articles about hypothyroidism. Most were written for women, as if men never get these conditions. I mean, even if it is rare, these kids of articles and videos should not be made for women when men can get the conditions, as well. They should be made in a more unisex way.
yeah, I was embarrassed to push for being approved to be seen for it... because of so much female assoc. but Dr. Herbst said right away, that they saw far more men than women for it in Tucson. got diagnosed for this in Oct, by this Dr. - she was transferring to another Dept the next week, and I was set up with followup appts with her colleagues for this april and Nov, but then got cancel appt notices and that they were dis-continuing seeing Dercums Patients... probably an insurance thing - if there's no cure then why be seen by them? I live in OR, travel is not cheap. now I have to get in to see one of the Drs. they referred to.
![Lp. Последняя Реальность #97 ЧЁРНАЯ МАТЕРИЯ [Анти Скинт] • Майнкрафт](http://i.ytimg.com/vi/k4MjXCzKsYw/mqdefault.jpg)
I have dercums. Had a couple of lipomas in my early twenties. Had a few more develop. Deployed to Afghanistan when I was 42. I developed more lipomas during my deployment and many more after returning. I have had 90 removed. I am 50 now and still have many more. Angio lipomas ( more vascular than regular ones) are the ones that tend to be painful. Mental and physical stress cause lots of pain and more lipomas to develop. Try to reduce these factors in your life. I was a Soldier and in very good shape. However I reduced my exercise to light exercise as lactic acid build up causes more lipomas. If you have this disease I feel your pain, literally. I do not take pain medicine now because reducing stress is the best treatment. I tried lots of pain medicines and they had marginal effects if any. I even tried pot. Most doctors have never hear of this disease and you will feel slightly marginalized by their lack of understanding of the disease and it's progression. A dermatologist can usually provide you with a diagnoses. I believe that exposure to JP8 (jet fuel) caused this. Hope this is helpful to you if you have this.
Thank you for your service. Also, thank you for sharing your e experience! This helps!
Hi. I believe I have dercums as well. Had a small lump removed in my lower back in my early 20's and didn't seem to have any problems with it. I also had a few more develop during my career but they were more worrisome than bothersome. It was only after I had the series of anthrax jabs in 1999 for Saudi deployment that I started getting more on my lower back which became increasing more painful. I had some surgically removed (general surgery with 2 layers of sutures) in 2018 and they have grown back with a vengeance. They seem to be growing deep inside and are also now climbing up my back. I refuse to have surgery again as I believe scar tissue just adds to the pain. I don't take any medications for pain as I am into more natural healing and my heating pad but am in the process of finding someone who can give me a diagnosis and also looking at different natural treatments. ANYWAY, I have heard that a lot of Gulf War vets have developed these lipomas after taking the anthrax jabs and about to look into it more. I'm hoping to find a blog that will lead me to both. Take good care and thank you for your service and sacrifices.
I have dercums disease and found out when I was 28 but had symptoms long before! I had to move to a state with warmer weather because I cannot take the cold weather! I can no longer take opiates because I need more then will tranquilize a horse but subutex seems to help with the pain and I have been on the same dose for 4 year's! I have been confined to the bed both days and months at a time so I understand the pain with dercums! I also take nerotin with an antidepressant! I am under no circumstances pain free because I think having the expectation of being pain free is unrealistic! I am trying to tell my story and I hope someone finds it helpful dealing with this horrible monster called dercums disease!
How can we contact you? Are you in a facebook group?
After watching these new dr. Shows. I am so blessed with my health.
where is the link to the white paper she mentions at 4:10? this needs to be included in the video description.
I've been vegan for 7 years and had zero lumps when I started then 7 years later I several lumps and just diagnosed with Dercum's and Lipedema. So that's not necessarily true about meat vs no meat
i feel like the keto diet helps me and i eat quite alot of meat.
My mother lost 60 ponuds in couple of months through dieting and I think that cause some shock in her body and she got dercums ,I honestly think that's what caused it for her,sometimes extreme diet change can actually mess your body up
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
dont see how meat would be inflammatory. most likely seed oils
@Jennifer Romero red meat is inflammatory for me. I can do a bit a month but that's it. I believe part is lactic acid
Same here...my mom had horrible lumps on her arms near joints, and on her hips...but no pain. I have them all over....over 300 of them..with no help in sight. I am on county insurance, and no I e will touch me or help me. I had one dermatologist that dx me. Then the insurance took him away... I am in severe pain every freaking moment. Every time I move, it is worse because I have one large one that wraps around from the spine to the hip to the groin. Yay for me!😞
Trying to keep fighting, but I am so tired...
I have episacrial lipomas and they are extremely painful. I also have Dysautonomia including POTS, Mast Cell Activation and Ehlers Danlos.
Same
I was lifelong vegetarian when I developed Decrums
Obesity Medicine Association (OMA) knows about Dercum's and has a database of clinicians that can help
Thank you!
I know when Lipedema started on me and I have some lipomas too. Have first surgery May 10, 2022 Dr Beidas. I had to have my master gland the pituitary removed in my second surgery for Cushing's disease. The gland pathology had minute cells cuasing over production of cortisol. Up until I was around 40 I was very small, size 5-7. I am on all replacement homrones but it is hard to find a doctor, even an endo to replace a woman's testosterone. Men with low testosterone develop tissue disease, loose and they get fat. That is one hormone I haven't been on very much for 17 years. I am 68 and talking to my doctor about the testosterone this week. I feel there is connection with adipose tissue and Lipedema stage 3 type 4 in me.
I have over 200 knots on my body, with severe debilitating pain. I have been trying to get diagnosed for 8 years with no luck. It can be very discouraging!! Everybody thinks Im crazy.
Amanda Parton I went through exactly what you both have but don't give up because believe it or not one day you will find a doctor who cares enough to do the research they need to do in order to validate you're pain! I understand you're frustrations because it is very discouraging to go to doctor after doctor to no avail and I know sometimes you just want to give up on yourself because you start to feel if you cannot get them to care about you? then why should you care about you? but you must keep fighting! You are not just fighting for yourself! You are also fighting for all the people with dercums disease and helping to bring awareness to this horrible disease so more doctors can learn and understand this disease so they can help others in the future and who knows maybe one day no one will have to go through this misery! like it isn't hard enough having to live with this pain every day? They act like we enjoy going to so many doctors and are only seeking medications or attention! I haven't worked in years and I tell doctors all the time before this i always had two jobs and other then a little pot here and there when I was a teenager I have been drug free so I didn't just wake up one day and say to myself I want to be a jobless drug addict! who does that? I'm in pain gosh dammit! and I am tired of hurting and I want to be heard! I just want one doctor to care enough to do some research on something they haven't heard of! something they don't understand! Until the one day, one actually did and you will too hun!
Sounds just like me, very discouraged been treated horrible for being sick!
Where do I find this white paper to show a doctor?
I have 50 + lumps but not so painful, I do have many of the other symptoms.
I've had like 20+ angiolipomas removed since 2003. Some where getting quite large and painful. And mine seemed to form symetrically,if one formed on my right thigh I would find one on my left one. My surgeon told me that she thinks they may be related to an auto immune disorder. I have several other auto immune disorders,one involving my immune system trying to eat my retinas,celiac disease and psoriasis. I was put on the max dosage of cyclosporine and cellcept for my retina disease. Unfortunately I developed neurotoxicity from taking those meds which are actually for organ transplant patients so they don't reject their donated organ. But I'm not sure if this is related but after having all of my angiolipomas removed and being on the anti rejections meds my Dercums seems to have gone dormant. I've had no new angiolipomas since I began taking the max dosage. But I would have to say that I think for Dercums the immune suppressor meds would be like using a bazooka to hunt deer with. They are overkill and not worth the side effects the drugs caused in me.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I've been diagnosed as having Dercum's disease with over 225 angio-lipomas at last count. I did have 21 of the most painful removed. I am in South Carolina, how can I be treated by you?
+Dawn Epps Hi Dawn, FDRS does not treat anyone. You will need to contact Dr Herbst's office at (520) 626-7689
My friend has been diagnosed with it , she has it on her face , we can’t find anything on the internet about this disease being on the face but her Consultant still thinks it’s Dercums, This disease doesn’t seem to attack the face so what else could it be
I don't know if there is any coalition but I had my gall bladder removed and have crps. I had some lipomas removed but I think I also have dercums, small ones but very painful.
I've had these very painful lipomas for years. They are located around my hips and thighs. I had two removed which was very difficult, the surgeon took 2 hrs trying to get them out of the muscles and nerves they had wrapped around. I do not have a Dx of Dercums disease but have been dx with Lupus and Chrons but wondering if this is the issue to begin with. The lumps hurt so bad, even opioids barely touch the pain. My Drs seem uninterested in me and I don't know where to go from here. The pain is relentless and right now one of those lumps are growing into my hip joint. I'm miserable and I can barely work.
Hi! I was diagnosed with Dercum’s in September by my Rheumatologist. I began feeling a cluster of marble like lumps under the skin above my left hip. The pain was unmanageable and I have a high pain threshold. I also have Mixed Connective Tissue Disease which causes me to be in pain everyday. But back to Dercum’s, I went to the ER where they told me I had internal shingles which is rare but I get the rate stuff (MCTD) do it seemed believable. The more research I did on internal shingles the less I believed I had it. I followed up with my rheumatologist and he and I both said Dercum’s. 3 months later and at that time roughly 75 lipomas I was dx with Dercum’s. Before I was even dx with MCTD I spent 3 years going to doctors who told me theres was nothing wrong or I’m doing this to myself and kept pumping me with pills. Finally I went to rheumatologist I have now and was dx in 1 day. Flash forward to the Dercum’s my primary and 2 general surgeons blew me and my lumps off. Thank god my rheumatologist always works to treat me. So my advice to you is to keep searching for a doctor that will listen and work with you. If you have to explain to a doctor what Dercum’s is like I have done 5 separate times because they’ve never heard of it then you need to get out of there. I think a Rheumatologist would be your best bet. You’re not crazy, you just have an invisible disease and for most people seeing is believing, unfortunately. I hope this helped and I hope you soon find a doctor that understands.
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
@@florencedonald6419 b
I have been diagnosed with EDS HT (III). I have piezogenic papules on my wrists and feet on compression. I have (this year) developed weight on my abdomin and somewhat on my thighs and gained weight despite eating 1000 or less calories daily, exercise and eating very healthy. My legs and abdomen has become "lumpy", different than celluite, and the skin is tender when touched. No hypothyroidism as of yet. I feel many, many pea size lumps in the abdominal area, some in the legs, more in the abdomen. They are tender on palpation. I have so many symptoms of Dercums, but are very similar to problems seen in EDS as well- crossover symptoms. The geneticist who diagnosed the EDS tells me (without seeing me again- this over email), that my abdominal lumps are the same nodules seen in my feet and wrists-piezogenic. I cannot find anything in medical literature to support that yet. Additionally he has not seen or palpated my lumpy thighs and abdomen. It was see me once, diagnose, and your done. Is that possible? they are piezogenic? Or should I pursue this (my thought). oh, I'm not obese-I am above the weight I feel comfortable with, always been trim. Additionally, I'm on NO pain meds due to having porphyria, but alleve/tylenol. Yes, I hit the motherload of genetic crap.
Sounds like lipedema
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
@@florencedonald6419 Perhaps you didn’t have Dercum’s 🤷🏽♀️ But don’t go around making such claims if you’re not going to tell others where to look for the info you’re claiming.
I just got this tonight I gained weight immensely immediately.
Are you completely sure that dercums disease has to be on the chest? I have lipomas all over my wrists, forearms under my arms, thighs, and all throughout my abdomen and all over my back. I can't find help, the tests all point to multiple lipomatosis but this pain is unbearable at times.. I'm also a male and have had it since I was 15 I'm overweight now but when I had it I was a skinny kid. This disease is limited to woman but it's needs to be more.. I had a pain management doctor tell me I couldn't have dd or fibromyalgia because always woman get them..
They can go everywhere ,even inside (around organs)my mom has them on her ribs ,shoulders ,neck ,the most ,and also abdomen,her shoulder is literally immobile because of lipomas
No ,men can also get them ,and you don't have to be obese to have it
Thanks 👍, I was just wondering cause I can't get a diagnosis, but in her video she says that it is most recognized by the one on your chest but my chest is clear 🤦♂️
Ok , it can be all over. Mine are upper thighs, hips spine,belly, chest, ribs, and arms and upper arms. Hang in there.
@@JayJay-yl2lf the rib cage. Press well around the breasts. I wouldn't be surprised they are there but the breast tissue gets in the way. They seem to be attached to the ribs
I was just diagnosed with Dercums. Now what?
I'm a man and I have lipomas all over my body. They give me pain all the time.
What kind of doctor are you? I can’t find any doctor who even knows what dercums disease is
Exactly why is it so hard to find someone
I'm only 29 and I got these bumps all over my body. Any tips from someone else who is dealing with this? Sometimes the pain sucks the life out of me..
I saw this Dr. Karen Herbst and was diagnosed in Oct. made appts with her colleagues for April and Nov. 2020. They sent cancelled appt. notices recently and that they are closing the practice of dealing with Dercums patients entirely - but included recommended alternate dr's. I had some lipomas (6 or 8) removed 25 yrs ago, and the multiples that have come on since are discouraging. taking care of yourself is the key.... which I am not good at. Hang in there.
Robert Kentta can i contact u?
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
I have small, hard, pea sized lumps all over my body with a couple larger. I was diagnosed with fibromyalgia. I had 2 mammograms for one larger one, they told me my breast was very lumpy with fat. It's most painful in ribs, hips and thighs. Struggle to walk some days and hurts to breathe. And I really struggle losing weight. Which doctor is best to go to for diagnosis? I gave up going to doctors, but things have progressed now and I don't think I have a choice.
i also have small hard pea sized lumps all over my body too, i thought i was the only one. i also have lumpy fatty breasts. the pain is horrible, but i haven't been diagnosed. i hope you get better and find a good doctor soon :)
@@zannaxz yes, I had a couple mammograms because I was concerned I about the lumps. They told me I have many, but they are benign and just fatty deposits.
I have 100s of lipomas in my right arm, in my thighs and have lumps i m my stomach/ intestine area my mum has histiry of lipomas bejng removed and they grew bavk we bith sleep but are always tired, my mum is niw suffering confusion.
Is is thjz dercumz disease we are bith easily bruised slsi.
Karen Herbst: This is Judy Keith and I haven't posted anything in a few years because my Dercums Disease has basically been dormant with small flares and suddenly BOOM! And of all places my head is under attack! I and getting knots all over my head and face and they are painful! And they are coming up everywhere else too like normal. I am having massive chronic migraines, ocular migraines.Have you heard of anyone else having something similar happen to them? Hope you and your family are well!
I have mass of painful lumps on chest and ribs its really painful i just wish this will go away
My mom had that ,those on the ribs hurt terribly
@@SRBOMBONICA86 sorry to hear that.. yeah its painful 💔
The doctor seems to have a lump on the side of her throat.
O Aquino good diagnosis
I have Dercums disease all over my body and the pain is killing me on my legs , But sorry doctor exercise is impossible but I can swim.
I dont recommend lipo. Dercums started on my body because of a lipo cosmetic surgery i got done for gynoccomastial. The area where they lipoed started to produce the painful fatty tissue and now its all over my body.
What do you mean ? Did you remove your lipoma just for the sake of cosmetic reason ...do you have any pain in your lipomas before removing them? And many of them you removed?
That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently
The weight, and diet opinion feel incorrect. I had lipomas even back as a teen with extremely low fat and also very much into athletics. Nothing, no diet etc. ever stopped them from forming.
I've got lumps on my sides, ct scan doesn't show anything, and ultra sound show nothing abnormal. I can feel these knots with my fingers. the pain sucks but the fatigue is and just feeling drained is what is ruining my life. The wont give me pain killers. I dont know what it is, but at this point i just want to be cut open and have them all removed. I have big ones and smaller ones and the big ones get smaller and hurt less somethimes, i have trouble emptying my bladder sometimes. I do eat a clean diet, i only drink water and an occasional apple juice. I have way more bad days than good days lately. if this is dercums, can they be removed? can atleats some of them be removed so i can bend over without pain? im 38. where can i find this white paper????? anyone?
They grow back sadly
But it might help for a while
@ The Miracle This is the same thing that has happened to me with CT scans and ultrasound. Showed nothing. But 3 dr's have felt the lumps. Other ppl have felt them. Of course dr's I had been referred to have not been able to feel them because they sink back inside my body. I lost a huge amount of weight.
Then these painful and I do mean horribly painful lumps started showing up. I have more weight yet to loose but can't even bend over due to the pain from lumps much less exercise.
Some dr's think all I want are pain killers! Totally not true!! I want to be fixed! I want to be able to bend and exercise again. I want pain free without pain pills!
All I take is tylenol now because I don't like the way dr's started to question me on why I needed something for pain!
Just want the lumps removed for good and my life back.
@@missmoneypenny3829 You are a super solider, in the SSP. These drs dont understand what is going on in the world.
@@digitaldame2672 Thank you so much for your encouragement! A voice in the dark has touched my heart today - your voice! Again, thank you! 💕💞❤
I couldn't get through the first couple of minutes. Women this. Women that. I had this same problem looking up articles about hypothyroidism. Most were written for women, as if men never get these conditions. I mean, even if it is rare, these kids of articles and videos should not be made for women when men can get the conditions, as well. They should be made in a more unisex way.
yeah, I was embarrassed to push for being approved to be seen for it... because of so much female assoc. but Dr. Herbst said right away, that they saw far more men than women for it in Tucson. got diagnosed for this in Oct, by this Dr. - she was transferring to another Dept the next week, and I was set up with followup appts with her colleagues for this april and Nov, but then got cancel appt notices and that they were dis-continuing seeing Dercums Patients... probably an insurance thing - if there's no cure then why be seen by them? I live in OR, travel is not cheap. now I have to get in to see one of the Drs. they referred to.
Here is the link to the white paper, www.lipomadoc.org/uploads/5/0/4/8/5048532/dd_white_paper.pdf