Dercum's Disease- Nodular lipomatosis type III

[Jhewels]

I have a extremily rare orphan disease called Dercum's Disease. Is there any doctor on this site familiar with this disease or has treated anyone with Drcum's? I have type III nodular lipomatosis. many doctors are not aware that the disease exists and patients are often treated poorly, and never diagnosed . It is extremily painful, the disease in a majority of patients causes disability. It is slowly progressive . the type of disease I have can occur in non-obese patients, or patients that are slightly overweight can become obese. there is no cure or treatment for this disease. any advanced treatment are happening in sweden, and UK. one is IV lidocaine therapy which non of the doctors I know use this treatment  even those it is considered the best treatment out so far. I guess I am looking for anyone who knows or has treated any patient or if they know of doctors in or around Boston,mass that treat Dercum's.
jhewels I hope I hear from someone

[nsilk]

What's the difference. And how to truelly know the difference between dercums and all these other lipomatosis or neurofibroma syndromes etc out there?

[nsilk]

Hi serenity... How did they find lipomatosis in Ur spine? MRI? I can't seem to find a test that they show up on.. They all see thru the fat tissue..

[nsilk]

hi jewels, it's been a long time since we first spoke....I kind of lost the site.lol. A lots happened and changed in the past few yrs..I feel awful.. More frustrated than ever because not one dr of the hundred I went to...know a thing about dercums....they just say...ah..Ur a mom of 4..it's stress.. Or u look great..don't look like any things wrong w u... Or say lots of people have fatty lumps. They don't hurt ! . Symptoms have stockpiled..tho idk if they're all new dercums symptoms or more than one issue I have going on... I always had the doughy movable lumps on my belly.and may I add..none of my lumps ever protrude outwards to visually see...  Never hurt really to touch..but had random pain I. Their areas...or burning stabbing pain right before a new one emerged... Over time i got long hard rope like strings of fat under the skin in diff areas.. On or below my ribs.my inner thigh..and in my breast.breastbone and upper chest wall... Those are more small hard clusters of lumps... Does this all make sense? Diff types..and in diff areas? The past few months..they spread like wildfire..I have almost gum ball size hard ones on my lower back ..and upper butt..they don't hurt to touch..but I always have pain in that area inside.. Like a back labor ache.. And they feel like deep seated.. Is this dercums type lumps/issue? Does dercums cause Ur hips,leg ones etc to hurt? Recently...my hands turned grayish blue on 3diff random occasions.. Not reynauds.. As they weren't cold... Does anyone get this?  My other question is.. My insides always hurt.. I feel like I have pain I. My liver all the time.. My stomach is tender to touch. Sometimes my ribs hurt or in my chest when I breathe... A lot of neck n head pain,etc..tests come back ok. Funny thing is.. Where u can feel a lot of these lumps.. Large ones.. Even w a marker on it.. Kris, cat scans, and even a pet and ultrasound.. Gave never seen one lipoma! Why? What tests do so I can watch these things and know if they're growing inwards too deep? Is there anything to do to help dd or slow it down? People mention supplements, diets etc.. But what are they? I'm only 35. W 4wonderful children.my youngest is only 1... I've always been able to silently suffer thru what I was feeling..but it's started to wear me down, affects my personality, what I do or don't do.. I've always been so active and strong... Is this just a painful existence? OR do we need to worry about our life at jeopardy?..also, I live in  nj does anyone know of drs. Around here that are educated in dd? What kind do we see? A dermatologist?rheumatologist? Sorry for all the questions... I'm overwhelmed, scared, frustrated etc to say the least. Also, what's best..is liposuction good for it? And if we have a few removed...what does dr need to do or test?thnx for all listening to my long ramble... My minds full of questions... I appreciate it..

[mepeppi]

nsilk, yours is closer to my experience. I have areas where lumps are there to be felt if... and have had a couple dozen larger ones removed with the largest requiring hospital admission so that will not happen. For the most the pain is there before the lumps appear, and the lumps are so small in the rib/chest area. They are becoming evident on bottom rib and side of chest.

[serenity402]

Hi doc, I have MS, but i suspect i may also have Dercums due to the multiple painful lipomas i have and i keep getting new ones which pop up every few monts or so, all my docs just dont care and fob it off. Now a lipamatosis has been discovered in my L5 s1 and is making my life hell with walking etc and compressing my spinal cord. could this be related to the Dercums. please if you are still active on this site can you help me, I am seeing my neuro surgeon this Tuesday and need help convincing him its this and if you could emial me with some help i would be forever grateful. My email is shirley.***@****. Please I am desperate as i cannot even empty a dishwasher from the severe pain anymore.

[serenity402]

Hi Heather I have MS, but I also think I have Dercums as well. I picked up a massive amount of weight in a short period of time, get lipomas at a rate of knots that are extremly painful and all the doctors just dismiss, and sometimes my skin is so sore to touch it isint funny.. I have just also found a lipamatosis on my L5 S1 spine area and am wondering scince it is a fatty growth if it is related. I have a large one also on my leg the size of my Hand.

Is it possible do you think? could I also have Dercums and if so what type. I have suspected for a while I do but here in South Africa there are no doctors who have even heard of it to my knowledge so there is no help