I've just been diagnosed

Dercum's Disease
#1

My name is Yente, I live in Toronto Canada and I’ve had the luxury of being diagnosed officially within weeks after finding the info online and making a self diagnosis. And like most people I’m now at the “What now?” phaze; Here are my first questions:
A) I need to know if treatement with GH works? Has anybody here tried it?
B) My symptoms appeared in full force only about 9 months ago and the disease is progressing so darn fast- I went from very active [visual artist] to almost full invalide within the last 8 weeks- is this “normal”?
C) Would also like to find other Canadian sufferers with intent to start [local] suppot groups.
I have questions about dealing with our healthcare system.
I can offer the name of a good- as in knowlegable- doctor in Toronto.

Well that’s enough for starters; I’m not sure how this forum works; will I now be innundated with emails? I prefer open forums where I can read and learn from others. Is there a Dercums’ chat board I could join?

Hang tough everybody!!
Yente

#2

hi yente, and welcome to our group, you wont be inundated with emails, I too was only diagnosed 2 weeks ago, I had to educate my GP, living in UK with this awfull disease is not good, we dont have as much support from our doctors as there isnt much information about the disease itself, everything i know about DD I have learnt either from here or other sites
You should look up Dr Karen Herbst, she has done the fantastic job of researching DD and other syndromes.
Some members may send you a personal message but dont worry they are all helpful and full of support, I need lots of support at the moment, I am having a down week. If you need to rant or just vent please feel free, we are all here for support like i said.
sorry you have been inflicted with this nasty disease,

keep smiling,
geordielass

#3

Hi Yente,
It does sound like you are progressing very rapidly! Unfortunately, there is no normal with this disease. Some of us progressed very slowly for many years and then the DD went into overdrive. Others seem to become very ill almost immediately.

I don’t know anything about the Canadian system, as I live in the USA, but I can tell you it would be very hard to have a local support group just about anywhere. There just aren’t enough of us diagnosed with this disease. I only know 4 or 5 of us in my state (Missouri) , and we are far too spread out to get together especially when you consider how difficult it is to travel with DD.

A lady on another forum did try GH and said she had good results with it. I have no personal experience with it, though, and you would have to discuss it with your doctor.

Sorry I can’t help more.

Pamela

#4

Hi! thanks for your response!
I’m sorry you’re having a bad week- Hang in there!!

As for difficult doctors; I was really lucky; I had self diagnosed myself and my doctor knew about Dercums!! He agreed and referred me to a specialist who had participated in a Dercums conference here in Toronto last year. So the time between my self diagnosis and finding the right specialist was two weeks only!
I have not had to battle the system for recognition and thanks to our universal healthcare system in Canada I have access to which ever specialist or research facility necessary.

I have also been “lucky” in other ways; because I suffered from Fibromyalgia for 15 years I have develloped a very high tollerance for pain.
I beat the Fibro by creating my own special no carb diet and was painfree for 3 years so I know how to deal with a chonic condition in a positive way.

I learned that if I shift my focuss I can turn seemingly negatives into positives. Instead of just coping I’m an active participant in my condition.
For instance; I’m a single woman; if I focuss on the negative I could complain that I have no support and probably feel lonely and then get depressed. Instead I choose to see how wonderful it is that I have nobody dependant on me; that I’m free to sleep and eat when I choose; if I want to spend all day on the couch watching the TV then I can!! I’m grateful I don’t have to flinch at a loved one’s touch and all the emotional conflicts that come from having to deal with other people’s involvement with a chonic condition.
I also have learned to like my own company- I’m interesting to be with!!; I like my own thoughts and imagination and most of all my sense of humour; I litterally find myself laughing outloud often because of the absurdity of this condition’s manifestations (yesterday I couldn’t get my shoes on- you should have seen my antics- move over Laurel & Hardy!) and again because there’s nobody else here I don’t get hauled off in straight jacket for my behaviour!

My main frustration right now is finding practical info on GH for instance but I suppose that’s just because of my impatient nature and I should instead commit myself to researching it for a long period before jumping to conclusions eh?

I would also like to find a chat board- one where it’s easy to follow and participate in a “thread”- so one can see who’s reacting to what and whom easily… this one on one just isn’t as informative. Maybe I should just start a threaded chatboard myself?

Well that was enough babbel on my part; I hope you can find the means to “when life hands you lemons” make lemonade!!!
All the best!
Yente

#5

Hey!!! I was able to reply to one person because I received a email notification; how am I supposed to respond to the others on this forum?
Scratching my -evermore balding- head here!

Yente

#6

hi yante,
I found a chat board, but there was no one chatting. hahaha just me and my thoughts. You have a really good positive look on life…well done! i will pass that low carb diet tip to my sister as she was just diagnosed with fibro, and i too am under investigation for it…cheers

geordielass

ps…i tend to just keep checking the forum threads to see who replied/queried what.

#7

You may have received an email notification of a private message and responded to it. All you have to do to respond on the group is click reply and type away.

#8

Hi Yente, I know most doctors won’t go along with the growth hormone in this
country. It raises havoc with blood sugar if one is diabetic. There was
one woman who used it and had very good results but I haven’t heard how she is
in a long time and whether the improvement lasted. I am across the lake from
you in the Rochester, NY area. It is hard for anyone to get together
because we are all so far apart. I had symptoms for years but then all the aliens
invaded together in a fairly short time. I have too many to count now. I am
glad you found a doctor who knows about it.

Take care, Joan

#9

Hi Yente…glad to have you in the group. You sound like a very honest delightful person. I’m sorry that you have this awful disease. Yes, it is hard to be diagnosed with DD, but it is even worse to walk around for 40 years like I did not knowing what was wrong with me. At least you know the monster and can try to deal with it. We all hope that Dr Herbst’s research leads to a real cure. Until then, this group can try and give you what we have found out through trial and error. These great people do care about others…maybe that is also a symptom! Hugs and keep that sense of humor! Life always has good moments and anti-depressants help! Hugs, G Sylvia