Does anyone have any input?

Dercum's Disease
#1

I hope you don’t mind if i post here and ask questions, but I am pretty desperate to find out what is going on with me - as many of you were at one time, i’m sure. I don’t think what i have is Dercums, but perhaps in your reading about your disease, you came upon something that can help me.

However, I am an overweight women, 54 years of age. Though i am overweight all over, the weight is significantly more distributed on my upper arms and legs…disproportionately so.

For some time, the fatty tissue has felt very painful to touch but on my thighs, at least, I know there is cellulite and I’d heard that there is a benign painful form of that type of tissue. I can’t see celulite on my arms and in other places, but that doesn’t mean it isn’t there. My fat elsewhere feels sort of marble-y. Not having felt anyone esle’s, I’ve assumed that was normal.

About a year ago, i started having other problems as well, though. Usually, I am sitting, lying or walking when suddenly, I feel pain that is burning, or more specifically, feels like a bee sting – only more painful and long-lasting. It feels like it is under the skin and fascia and into the fatty layers. This pain can last minutes, hours or days and is followed by very severe itching in the same place that lasts days, weeks or months. The symptoms sometimes repeat in the same places or others over time.

Currenty, I am in the 'itching phase" in both my side and my upper right thigh. Yesterday, both my husband and I noticed something new – my affected thight is sort of swollen on top…certainly larger than the other side but it doesn’t feel like the swelling you get when you have a sprained ankle…it doesn’t feel congested, in other words, it just looks bigger, possibly feels harder, itches and is painful to touch. It is *possible" – we aren’t certain – that i may also be losing some tissue on the underside. I did lose tissue on the underside of my wrist a few years ago in the same way…it just looks like part of my fatty tissue wasted away, leaving a dent. I lived in a developing country for a while, and when I showed it to my doctor there, he did tests which resulted in an only slightly elevated ANA but he told me to go to rheumatologist when I got back home. The rheumatolist laughed in my face and told me to lose weight and stop worrying. /-:

I also have severe fatigue (yes, i’m overweight but I know lots of people you are as overwieght ast me and who manage to live a normal life…I don’t.) I tested 360:1 and then 180:1 on ANA but doctors say both are low enough to ignore.

Other than that, I have a history of ovarian cysts, have had a total hyterectomy. I also (I’m sure unrelated, but I will mention it) had Legionella and ARDS a few years ago. Finally, I have sleep apnea (use CPAP) and have hypothyroidism (taking armor thyroid). I do not have the pressure points for FMS.

Any thoughts? thank you for your time.

#2

If you email Dr.Herbst it is amazing how fast she will email you back. She is quick to answer any questions. You can find her at karen.herbst@va.gov

#3

It is easy to tell if you have DD. With DD you have painful lumps in your fat. It hurts very much if you or someone else presses on the lumps. They can be small or large, soft or hard anywhere on your body. You can’t miss them. They like to grow along a nerve so they can grow tentacules and squeeze the nerve causing you pain. Some of them will be in a row, some in a cluster. They like joints. Press around your groin…those are very very painful when pressed on. You may not have them the same place as anyone else or you may have them the same place. But, if you do not have painful lumps in your fat you do not have DD. I hope that you do not. It is a terrible thing to have. Good luck to you!

#4

Hi, usually DD begins early. Typical is inflammation in knees and shoulders.(in my case when I was 19)
Many DD patients are a bit over weight but gain their weight very quickly 6-12 months 10-30 kg. Same period they are very tired. In DD You don’t have pressure points but if You pinch Your self in same places You will scream even if You won’t want to. We get also pain located in hips and can get bone membrane
inflammation, which is very painful. the joint problems are connected to this and the symptoms jump. Put cold not warm thing to these places.

Cysts are typical. Sugar and thyroid problems.

Usually You have somebody in your family who has rheumatoid diseases or allergy.

The one important thing is that even if You try, you cannot loose any weight, because the fatty tissue is damaged.

I posted a info from Sweden few days again on this list please read it.

Your story sounds a lot of DD, but there are other things near by. You have to find a specialist. Rheumatologist do not allways know this diease. Where are You maybe we can help You find somebody?

We all have bee laughed at many times, so do not despair.
Help is comming…:slight_smile:

Arieldiva

#5

My lipoma started in 1988, at that time they weren’t painful, until around nov last year, i too, put my pain, fatigue down to being obese, it got to a point in March were i couldnt take it anymore, I had my doctors baffled until on searched painful fatty lumps on google and found DD. I dont have a lot of lumps but i have half and half, some painful and some not. I believe although i have had lumps quite some time, I am infact early stages of DD as i never noticed them painful until Nov.

I looked up and did all my own research, i found quite a few of the symptoms co-insisted with mine, apart from the ‘walking on glass’ symptom, until i went out the other day and felt my feet so painfull, i was in agony and realised i do actually suffer this too, i dont hve lipoma in my feet, i am starting to get on on my right leg above my ankle tho.

alot of DD is due to self diagnosis unless you live near Dr Karen Herbst and can be seen by her. At this moment in time my doctors are trying to treat the pain, anxiety etc. I am being referred to a rheumatoidologist/neurologist after being seen by a dermatologist as she explained a dermatologist deals with skin complaints and my lumps are under the skin.

I hope you get somewhere and hopefully your ‘flare up’ doesnt las too long. the bee stings sounds like DD and the lipoma growing. thats what they feel like.

take care
geordielass

#6

I was 43 when I first noticed lumps and had them removed.I found alot more about 3 years ago when I got extremely ill…so ill I finally went to a Dr…they told me I was diabetic and I thought thats why I had gained so much weight in a short period of time and was so wasted and feeling so horrid…Last Sept I did some searchig for the term lipoma as thats what the surgeon who removed the lumps called them…I found DD and shortly there after I took the sysptoms to my Dr and he agreed…It was exaserbated by my going theu menopause …I wrote to Dr Herbst and got as much info I could find…I know my experiences are some different but there are too many that are really similar for this to be a made up or in my head disease…I am still having things happen to me and some days I wonder when or IF it will ever stop…Check with Dr Herbst’s website…Email her…I did and when I finally got a diagnosis it kind of helped me mentally because I could put a name to what was happening to me even if I couldnt stop it or make it better…Praying for you that its not DD…Elaine

#7

Liha…What you describe as marbley fat sounds like a mat of lumps which is a formation of multiple DD lumps. I have areas of fat which are covered with mats of small lumps also. Do you also have other larger larger lumps? You have to press fairly hard to feel them not just on the surface. It does hurt. Your other symptoms sound like DD. A lot of us have thyroid, diabetes and so forth. Hugs

#8

I began having lipomas and years before I ever heard of Dercums Disease. I had a ton of different problems and I never thought they were related. I had been to several different doctors with NO answers. Always told to lose weight, exercise blah blah always the same old story. I just was so disgusted and getting more depressed feeling like I was losing my mind and my body was just falling apart. The stinging burning pain in my arms and the feeling in the bottom of my feet like I was walking on glass. The stiffness whenever I try and get up out of bed, or out of a chair. Going up and down stairs my legs stiffen up and I feel like they will lock on me and down I will go. I cannot do them without holding on to the rail or someone to balance myself on.

I went to a dermatologist and he had been an internist before. The doctor I work for got me in to see him. Because of course he did not take new patients. He looked over my lipomas and asked me a couple of questions and he said “oh you have Dercums Disease” but didn’t really tell much more than that. He said not to worry about it. Of course I immediatly went to the internet and looked up every site I could get my hands on and realized I was in trouble and all the “different” symptoms were all actually all about Dercums.

I have a great Nurse Practioner that has been helping me manage it. As much as it can be managed. With meds and nutrition. She has me on OPC, a great anti oxident. Keeps me from getting every cold or bug that people bring in the office. B Complex, and I take a really good Omega Complex with 3, 6, and 9 as well as b6, niacin it gives me energy and focus plus keeps my triglycerids and lipids down. Very good stuff.

I am rambling. But we all have been laughed at, thought to be hypochondriacs (sp)? Its frustrating to say the least. I love having this site to vent to and the support we have for each other is very important. We all live so spread out its the only way we can communicate.

I hope you don’t have DD but whatever you have this is a good place to ask questions and vent.

Brennie

#9

Ljha,

A lot of what you describe does sound like DD, especially the marbley fat and the bee stings and itching. If your painful, swollen fat is primarily in your arms, legs and hips, you should also look into Lipedema. I have both DD and Lipedema. They seem to be closely related. If you write to me privately, I will provide you with an address for a support group and also some links with good information about Lipodema. It isn’t fun, but it is better than having DD.

Pamela

#10

Yes, the marbley fat got my attention too. My entire belly is one big mass of “marbles” although I usually call them “pinto beans.”

Pamela

#11

First, let me thank you all for so graciously answering my post. I can see why in another section, one person talked about a “good thing about Dercums” was the friends she’d made.

AFter reading your posts, I investigated and realized that I do have some bigger “lumps” as well as the marbly stuff some have said might also fit the pattern. I just never realized it wasn’t normal or that painful-to-touch wasn’t always normal. Obesity is a condition that makes one ashamed, so you don’t want to talk about it. And when you do talk about it to a doctor, all too often your concerns are pooh-poohed or you are just told it is your fault for overeating – which of course, makes you not want bring it up again! Of course, I guess this isn’t a common condition; still…

Anyway, I don’t know if Dercum’s is what I have or not but it seems worth looking into. I noticed that Dr. Herbst is in San Diego. I live north of Phoenix but I do visit my brother in San Diego occasionally. I am considering trying to make an appointment with her and get an evaluation. I could visit my brother and kill two birds with one stone.

Have any of you been able to see her? Can you tell me what kind of tests/exams I might expect during the diagnostic phase? Is it difficult to get an appointment? My PPO insurance does not require a gatekeeper referral, fortunately.

Thanks.

#12

Ijha,

Funny. Aside from myself, I’ve never heard anyone else say they thought the fat pain and all the rest was normal! I did too, and I am relieved to know I wasn’t the only one. That’s a pretty good indication you have had this for a long time.

Seeing Dr Herbst would be ideal if you can swing the trip. I have not been able to afford to get there, since I live so far away, but I know many who have. You would need to talk to her to find out what tests she would run, but you would come away with a diagnosis. I believe she said she does appointments on Tuesdays. I suspect she is booked out pretty far, but I know she would work you in at some point. You c an contact her by email or by phone. If you choose email, please be patient. She is very busy with research and writing up papers for publication.

Pamela

#13

If you go to her web site you can get her question form and fill it out and mail it to her. It really sounds like you do have DD. It does help just to get a DX. I have a doctor a rheumatologist who has diagnosed me here in my city and is treating me for the pain. Not a cure just the pain with Gabapentin. I am suffering so much for diabetic pain in my foot neroupathy which is so bad. some kind. Hugs, Grandma Sylvia

#14

Wow, I did email her and got an answer today (within 24 hours!). I am calling tomorrow to get and number and set up an appointment. I expect it will be quite a while in the future, b ut it is a start.

Thanks again.

#15

I’m glad to hear that, Ljha. Going to see Dr Herbst is the easiest way to get a diagnosis. I wish I could afford the trip!

Pamela