DD triggers - Common Experiences?

Dercum's Disease
#1

Ben mentioned something about stress maybe triggering DD. Is that a common experience with you all? I know when that one doctor told me he believed my problem was psychological I was extremely upset and I got more and more lipomas. I wonder if that stress caused my DD to get worse? But I don’t think stress alone could cause DD (that would make it a psychological problem, right?) I can’t accept that my mind created my DD… but I can accept that stress makes it worse. I was wondering what others experiences are with stress and DD.

ALSO – The doc I saw yesterday was so kind!!! I will have to share that in a different thread… but I wanted to add to this post that he said MRI’s can trigger lipoma growth! I wonder if anyone experienced that! I had an MRI back in June but it didn’t make me get more lipomas.

#2

SuRi,

Stress makes everything worse. I think depending on each person particular problem, where ever we are the weakest is where it really digs in an takes root. Whether it is DD, IBS. Fibro, any illness. I went through a very stressful period of time about twenty years ago and ended with me have a ton of female problems. The stress in the body creates an acidic chemistry and that sets us up for “dis” ease. And it finds the path of least resistance. I hope that makes sense its early and I am not fully awake yet.

I know that humidity is not my friend and that definetly triggers it in me. I don’t want to get out of bed when its rainy, or just very humid. Its like someone is holding my body down.

Hugs,
Brennie

#3

I meant to start a new post! DUH… just ignore this!

#4

Hmmmm…
When I first started having problems back in December I wasn’t having any stress problems (I really do have a great life, my husband takes care of everything and I just keep house, cook, do laundry and watch the huge HD TV he bought for me) I didn’t have any stress until I had this problem that no one could figure out – then I got more and more stressed and it got worse and worse… so I have a hard time thinking that stress caused my DD to begin… but can see how stress made it worse.

#5

Hi

Stress is a factor that makes DD worse. Sometimes it may be virus infection, accident, work stress that triggers the DD first time, but it is not the reason for DD. You have not done DD. It is something we are born with and something triggers it. Read the patient info.

And if the doctor are trying to say it is your fault stop them. But when You have DD blooming :slight_smile: you should take it easy.

DD is lipomas, but also a lot of other things. Lipomas are just a symptom.

I am glad You have found a positive interested doctor!
Hugs

Arieldiva

#6

That is what I thought Arieldiva… Maybe I just read what ben wrote the wrong way… I thought he was saying stress creates DD. Oh now I have a reason to take it easy and do nothing, LOL – I am good at that!

#7

Something else that triggers my DD to get worse is sunlight. If I am sitting outside and the heat from the sunlight hits my legs they will burn, even with long pants on. I am not talking about sunburn and bright sunshine on a hot day… it can be 70 degrees out and not hot at all but the sun hitting my legs makes my lipomas burn and sting. It is as if the lipomas are under a heat lamp about 1 inch from the surface, but the rest of my body isn’t hot at all. Weird, huh? LOL!

Something else that triggers my DD is walking. I sure hope these pain meds help, I miss walking through the woods.

#8

I think that I am pealing an onion. Taking away everything I don’t really need to do and stress that I carry, because everybody else does it ;). Then I look which things I have to do and which thing I loved to do. I have learned to avoid getting cold and sometimes sunshine can get me ill too. Doing too much physical things like cleaning the house, carrying food home, shopping repetitive movements are really bad. Staying still and sitting in front of computer four hours is bad. I say that I have to "paw"around( I animal lover) soft movements in my own pace.

The thing with pain killers is that they all have side effects and now my kidneys are shutting down and I have had to change medication many times. If You walk with pain killers, You will stiffen and get worse when the pain killer fades. I got a bad inflammation in my knees in the beginning of DD and it ended with that I had to be very restrictive to take pain killers, for when I took them I good not feel that I damaged my knees…

One old doctor said to me many years ago: pain will not kill You but painkiller will.

I am not against painkillers, far from it, just be careful :slight_smile: It is important to get something that really works and have painkillers for different kind of pain.

Often it is enough to have the medicine on the table and know that if I cannot take the pain I can take the medicine.

(Some meds You have to take regularly)

There so much we don’t know about DD and the sad thing
that there is so little research (which means that it is going to take along time before we have something specific for DD)
Just now it is trial and error.Doctors tests meds that help in other conditions.

We are the guinea pigs…

Arieldiva

#9

Oh I am very leary of pain killers… and ANY pills. The side effects and warnings are sometimes worse than the problem! I saw an anti-depressant advertised one day on Tv and the fast list of possible problems included sudden death!

I am not going to keep taking the pain pills… just for now because I am not dealing with the pain very well. I think the antidepressants I am on will help with the pain enough eventually. Sometimes I think the pain is made worse because of my reaction to it. Maybe in time I will get used to it more and it won’t cause me to get so upset about having it. Sometimes I cry about the pain, but the pain isn’t bad enough to be crying over… it is a combo of the pain and being sad that I have pain.

I am sorry you have such a hard time. I am hoping the meds will help me, but right now I am struggling with simple things too. Like going to the grocery. My husband went with me last time because I thought the pain was from pushing the cart. I found out it was just the motion of walking up and down aisles!

#10

I had lipomas in my arm that didn’t hurt 3 years before the major stress and bloom.

I almost think it is somehow chemically induced… Arg, that isn’t right.

Like it was always there… But the huge stresses flipped a switch…

Before all the deaths in my family, I had 2 tumors in my left arm ( and they didn’t hurt at all ).

During my fathers funeral, they ached.

I spent 2 years in such turmoil and pain after that. And THEN I got a bloom of approx 10 in my right side.

The first doc (walkin clinic) said forget about 'em. The pain became so intense, right there in his office, he decided I was a drug addict.

I could continue…

But the point is, I am a mutant. My arm muscles connect differently, my teeth regrow (another set of wisdom teeth are coming in… 3rd or 4th set), I got elevated estrogen levels, my B vitamins are low enough
for doctors to retest retest retest. Once again, I could continue… I can read a license plate from 4 blocks away. I can hear a muted television from outside the residence…

I think of multiple things at once… Literally. I can say “that’s a problem, kick it to the back and worry later”, go do algebra or whatever and next thing I know I got the solution to the thing I had just put off.

Put another way… My thought process is multi-threaded. And I am not always directly aware of each thread… DD is so terrible for me because the pain strips me down to one cylinder smoking.

I read college textbooks in 4th grade, I rebuilt my parents hifi system in 5th grade. Telescopes and microscopes in 6th grade. By high school, I could read almost as fast as I can move my eyes. I created a
method of doing less classwork (slackers think they are slacking off) but learning more (teachers are baffled it works).

Gifts flow, and tumors grow.

Anyone else like me out there?

#11

Na… They are just as mucked up as us. I get PMs to clarify.

Methinks the actual issue is we are struggling to catch up… And they are trying to help us, one thing at a time.

I came here scared and confused. Every reply gives me strength.

I still get confused, but I ain’t confused. I hope you understand.

Brain fog sucks. Don’t want to give bad advice- RTFM. But we got no manual to read.

So long as links are included, or the referrance is understood, I don’t mind being told where to find answers.

Dercumsworld will do a lot of good. Put it ALL there. Then RTFM can work!

I can arrange Internet time at the library to assist… Just let me know when.

#12

Hi Suri,

No stress does not cause DD, but it sure aggravates it. There is much evidence to say it is genetic, although not all can find family members who have it. I suspect we all have the tendency long before it manifests and something like physical trauma, steroids, or possibly extreme stress triggers it into an active phase.

Hugs and spoons,
Pamela

#13

Hi All,

I’m hoping I can help stop a misunderstanding from being blown out of all proportion as I almost left this group over one of those last year. We all need to keep in mind that you can not hear the tone of voice in the written word. I am positive that no offense was meant. Sometimes the written word “sounds” much differently that it was meant to, and that is especially true when the writer is trying to communicate in a language other than her first language.

Please, let’s give each other the benefit of the doubt. We are all very ill and just trying to help each other.

Hugs and spoons,
Pamela

#14

I don’t think my trigger was mental stress it was stress from having surgery. Anyway, the painful knots “bloomed” the very next day.

#15

Oh I know Pamela… I deleted my post as soon as I realized that I was reading a tone that may not have been there. I am so moody and on edge. My problem… sorry I didn’t delete it fast enough to stop it from going through to email. ((SORRY TO ANY WHO GOT IT, I WAS HAVING A BRAIN ANEURISM, LOL)))

Ben-- You are NOT a mutant!!! I used to have a friend in college who I could have conversations with at high speed. We were both “multi-threaded”… we could talk at each other at the same time (like she could ask me a question at the same time I was telling her something… I could hear her question while telling her something and answer it at the same time she was commenting on what I said, and on and on) SO, maybe that is normal – or maybe we are the only 3 on the planet!!! OH NO!!! LOL!!

I don’t think my dd was caused by stress either kathie… I had some major stress early last year whem my mom died… I mean almost hospital ready nervous breakdown. If that didn’t make mine bloom no amount of stress would. I think mine would have been the kind that came on slowly but my hysterectomy sped it up.

#16

Heck yeah Grandma!

If it wasn’t for y’all I’ld be going crazy still.

Love and hugs!!
(what’s up with spoons? Inside joke?)

#17

Hi Ben,

You can read The Spoon Theory at http://www.butyoudontlooksick.com/the_spoon_theory/ Get the tissues ready!

Hugs and spoons,
Pamela

#18

Brennie… right before I went to sleep last night it popped into my head what you said – about the path of least resistance. It was like my wacky brain finally understood completely. SO, in a way stress does cause DD… but not, LOL… I will confuse myself again if I think too hard about this, LOL!! We have the disease but it may not manifest itself in some people until they have a stressful thing happen to them. AND that sort of includes external sources like surgery or trauma… it is stress to the body too. It is all stress to the body and it triggers the DD to start, but it was hiding in there before the stress.

Sorry if I am sort of slow… you know, one of the symptoms of DD is dementia… maybe I have that! (if I had that I wouldn’t know it, LOL!) Seriously, I do think I have the “confusion” symptom… I am easily confused and my mind goes blank a lot (too much to be normal). Thanks for putting up with me ((HUGS))

#19

It takes time to understand DD.
How could we when most doctors mumble something and write pain kilers…
But together we can try to see the thing that are common to all of us…but we could really need professinal help to the research.
I have had DD over 30 years, at least, and I am not much wiser :frowning:

Arieldiva

#20

That pain doc I saw told me he was going to research it and said he had access to things on the web that I didn’t. I wonder what the “for doctors eyes only” web pages say. I wonder why there is info only available to doctors. Maybe we could learn more about it if we had access to everything!