DERCUMS DISEASE

[Samantha]

My research has bought some success
Appointment with my Doctor (left literature on dercums with him about 3 weeks ago) so had time to go through and study............

His words "Highly Likely". all my symptoms fit, how did I come across this info. (to be honest I think I searched painful lumps or something, and this very rare disease popped up)

So he has the Dercums Society website info, (not many doctors know of this disease so it's going to be a learning curve for both of us with treatment etc)

I won't go into detail just yet on the rest of this as I have some other (Huge News, unrelated to my undiagnosed illness) that I'll share with everyone soon. Then I'll be able to tell you the details on what's happening.


I'm NOT DIAGNOSED YET, but have a little ray of hope.

There are different types of Dercums and I fall into the
"In some there is only localized fat, without general obesity"

It's also known as Fatty tissue rheumatism caused by immune defense reaction and this may just explain why I have that very painful lump (tiny lumps within that lump) which are pressing on nerves. The lymph glands enlarge, perhaps why I have costocondritis for 2 years, the constant pressure on my rib cage. Plus there are so many other symptoms that fit it's uncanny, from easy bruising to tender lumpy stomach, exercise makes the pain worse... there are so many symptoms that all fit to a tee.


Anyway just wanted to share

[Samantha]

If anyone out there reads this and has Dercums Disease I would love to have a chat some time 

[LumpyLady1]

 
Good Morning.
I was reading your story this morning becuase I was unable to sleep due to having Decrum's Disease.
I have to be honest and tell you I have not read your entire story, I will have to print it out and read it while I am laying down later because I have too much pain to sit here this morning.
I was actually looking for help for a swollen spleen when I came across your story.
You sound so much like me for the past 20 years!
I wrote my own story as well but ended up removing it after folks were saying nasty things. It was over 100 pages! lol

It took me 18 years to find out what these lumps are and now.... I dont have insurance and have to live with it.
Please view my neck lumps (approx 4-5 inches wide X 6-7 inches long on both sides of my neck. Plus over 80 visable lumps in my other photos. If you click on the albums link and then on "my Decrum Lumps" album it will keep you from viewing other photos you may not want to see.
Just remember you are not alone as so many of us have thought in the past.... there are groups and people out there with DD that have no one to turn too for help and that is why we are all trying to band together.

I do hope that I may have provided you some additional help for DD.
My hopes and prayers are with you!
Sharon

[Samantha]

Finally someone who has this I can ask questions (sorry I know this is a debilitating disease and hope you understand) I'm just so excited to speak with someone about it who actually suffers from it them selves.


I'll definitely take a look at your medical pages so thank you for sharing 

I've already tried to contact Heather (emailed over 5 days ago) just waiting for a response.
The Dercum Society website emails come back "undeliverable" and I've tried several times. I also emailed Dr. Karen Herbst (found after google search) and she just referred me :Lipomadoc.org.. So I was at a loss who to contact, desperately searching for someone to chat to as all the forums I've found on Dercums Disease have not been posted on in years, alot of dead leads so to speak, so I'm very excited to hear from you Sharon 


I'll take a look and read your medical pages, but would you mind if I asked you a few questions ??

I've got quite a few  firstly I know each case is different but does this lump look like Dercums to you?


I realize there is alot more too it so I'll just start with this one.


I cannot imagine what you've been through  the suffering and pain, but I can imagine how you felt after finding a diagnosis. It's a shame you took your story down, if you have a copy of the 100 pages I would love to read the whole thing. Most people can't be bothered reading, but I think the whole story is very very important, every minor detail could possibly help someone else out there, and it was the reason I started my own website and forum, I was extremely frustrated at people posting once or twice about their chronic pain, suffering and undiagnosed illness, but most of the story was left out, and never picked up, never completed and left me somewhat annoyed..

Anyway thanks again for all this you have no idea how much it means, and I hope you don't mind helping me out a little ?


 
Sammy

[Cathie]

I'd like to read it too if you still have it.
 I can't seem to get a photo of my lump, it's a lot smaller than Sam's, at the moment i don't know if it's going down, or it's being hidden by inflamation, which i thought would have gone by now.

[Samantha]

Yes, might be worth while you having a look at the website and links too Cathie ? 

[Cathie]

yeah, that last link was good, Haven't read it properly yet though.

[LumpyLady1]

Good Morning everyone,
I am sorry I have not been back since posting but, I have been pretty bad lately and pretty much just laying around hoping the pain will stop.
I have alerted Heather to the possibility of you joining the group. They are anxicioulsy awaiting your arrival. Heather has been very ill the last week or so as well that could be why you have not been approved yet. I will have her re-check her messages for your request.
Sorry this has happened... she is usually right on top of things but, considering all she does for everyone... she has her down times as well. I am sure you can relate.
As far as Dr. Herbst contacting you.... She has sooooo much on her plate right now.... between the research, her patients, her sites (and others), fund raising, job interviews, TV shows, etc..... she does not have a moment to herself.
I have also asked her several questions over the last year or so and she does not directly answer them.... I guess it may concern some legalities.... or it could just be she needs to see each person to actually provide the requested information. It could be a hundred reasons...
I know she is swampped with hundreds of questions everyday.

Dr. Herbst has provided Heathers site with up-to-date-information almost on a weekly basis or as it becomes available.... And Heather sends us updates to members, from Dr. Herbst as well.
So, if your looking for,  up - to - date help, Heathers is the place to go.

As far as Limpomadoc.org and D Society.... it is just basic information on the D Society page .... its been there for a long time! But, most of her stuff is in PDF files and you have to download it on her lipomadoc.org site.


I would be happy to answer any questions but, I am still learning as well. I myself still have a ton of questions. lol Plus I am dealing with some pretty advanced "other" problems as well. My bad days far out number the good days now so, I do not spend as much time on the web as I use too.

No, I dont have my story any more.... there were too many bad, hurtful, really mean, statements made from people on another site so, after months of trying to justify my story.... I just took it off the net. You will find that most people have no idea of the pain we go through and all the trials and tribulations we have had to go through for many many years until we get diagnosed.... so, people think we are emotional basket cases and I have to admit... sometimes I am a basket case. But, for the most part I had just had enough of the medical world and being treated like a hypochondriac..... like a nut case.... I just deleted it all!  Now I am sorry I did.
It's pretty much been 20 years of hell dealing with Dr.'s that think they are god and know-it-all! And we know nothing about our bodies! Even though the lumps in my neck are hugh.... they still pushed them by the wayside and pretty much said the pain was all in my head! I wish! God, how nice it would be to take meds that cover up the mental part causing the supposed pain! lol

With all the hyp on TV about "talking to your Dr" you would think they would listen as well. But, it rarely happens. TV needs to make a commercial about Dr.'s listening to their patients instead of the other way around!

Anyway.... I am sorry that you may have DD. and the others too. If I can be of any help I will be more than happy to do so! Ask away!
But, you would probably get more infor from the folks on Heathers site. lol.... as I said I am learning myself. And I have tons more wrong with me as well that I am also reaearching to better help myself and the pain(s).
Hope to hear from you -all soon. Sharon   

[LumpyLady1]

OMG I'd forget my head today! lol.... yes, your lump(s) looks like DD. However; there are many type of lumps and many types or strands of DD and a related disease... lipoma, limphodema and several others... without testing, CT, and other tests it is hard to say at this point which of these medical problems you do have.
There are also some that are just swollen lymphnodes and can be removed easily.
I am under the impression (from talking to various medical pro's) that I have 3 type of lumps.... I believe there are 4 or 5 types.
I have them on my tongue... one type
up my nose... another type
on/in my skin.... another type....
and on my head.... yet another type.
Lumps on the nose, tongue and head are very rare to find.
I dont think this information is really helping you .... lol... sorry... but, I just wanted to let you know it could be various other things as well as DD.
It is also known or I should say.... med pro's are looking into lipodema or limphadema ..... 
That DD could be known to progress into those areas or perhaps.... those things are happening first and then going into DD. They are not sure which is which is yet. But, both appear to be at some point .... a part of DD world.

Someone here said they cant photograph their lump that it is too small. I have circled my lumps with pen and then taken a photo. This way I can document its growth. Most lumps are barely above the skin to begin with so, it hard to see in photos. There are hundreds of lumps I feel under my skin but, I cannot photograph either... but, I know they are there. lol sneaky little buggers. lol

Ok hope this helps someone....
Ask away! Sharon 

[Samantha]

Random thoughts............

You know I've always been 99% this was a bowel problem.. but the more I research..... maybe just maybe what ever this lump is (dercums or not) is the reason I think bowel, as I keep saying it puts so much pressure and pain on the bowel and to me blocks the passage...so of course I would say "Its My Bowel"

It's just a symptom..........a major one but just a symptom of this undiagnosed illness.
I recall my dermatologist saying I should have this lump biopsied.............which frightens me to no end, just touching it has me crippled in pain let alone a big needle jabbed there..maybe I can convince someone to knock me out for a biopsy (after my baby is born)
My big lump has many tiny hard painful pea shaped lumps within so perhaps they'd have to biopsy a few of them... ????

Just babbling
Sammy

[Jason-son]

I'm pretty sure I said you should get it biopsied to!

My theory is either a fatty tissue disease, or something with the lymph nodes.  i believe its the fatty tissue and whatever it's doing is causing the lymph nodes in the area to over work which is why you can feel them.

I dont see how you can get around a biopsy, and the sooner you do it the better.  You can always ask for local anesthetic like lidocaine or something first.  i think it should be your next step.  As far as i know local anesthetics shouldnt harm a baby either if you were to do them now... knocking you out though.. thats different.

[Samantha]

I agree I need one, it's a matter of asking and hoping they give one. When the ultrasound showed a lipoma it was described as nothing of concern (for them maybe, but to me it's a huge concern)

I have a different Doctor for my pregnancy now, but when money allows I might go back to Undiagnosed GP and see what he thinks..  I have a feeling he'll say lets wait and see what pregnancy does for the pain and lump...infact he has already said that so I may have to wait this out....

Jas there is NO WAY... absolutely NO WAY I could have this biopsied without being knocked out. I can't touch it without crippling over in pain...I'd rather die than have this done without being completely knocked out
I'm serious about this too....I know sounds harsh but I would rather die

[Jason-son]

:( sammy i wish i knew better how exactly it feels for you... my symptoms have always been more of general "malaise" then agonizing pain..  i just dont know what that kind of pain feels like..

[Samantha]

It's hard for anyone to comprehend Jas what constant agonizing pain is like unless you have it yourself....I feel all alone sometimes.
It's not just feeling yucky and blahhhhhh it's constant agonizing pain, never pain free........


If you can imagine feeling like your intestines are being strangled (constantly) like your being squeezed by a boa constrictor...
then add the feeling of someone or something is pinching yours organs (we'll what ever lives on the left hand side (maybe spleen...I've never figured it out)
when all this happens it hits nerves and bam the pain is agonizing......

So after dealing with that 24/7 you have to eat...even if just little bits, and that puts more pressure on the bowel, so it's like two boa constrictors plus a hard pinch to the organ 

Maybe the Boa Constrictor is biting me  cause it sure does feel like a bite or pinchy feel with stranglulation of the intestines......

[Cathie]

Someone here said they cant photograph their lump that it is too small. I have circled my lumps with pen and then taken a photo. This way I can document its growth. Most lumps are barely above the skin to begin with so, it hard to see in photos. There are hundreds of lumps I feel under my skin but, I cannot photograph either... but, I know they are there. lol sneaky little buggers. lol

Ok hope this helps someone....
Ask away! Sharon 

Thanks, Good Idea, about the circling. Pea size lumps under the skin i'm covered in, i just presumed they were knots/muscles, that's what the feel like anyway.
 My bigger one on the left, i swear is disappearing, or sinking. Though Brett maybe right, He says it's being camaflouged as i put on weight, He's such a honey tongue, lol.