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04/15/2011 08:30 AM

hi everyone

Posts: 8
New Member

hi just been diagnosed a few days ago with dercum's disease have had painful lumps for a long time but didnt want to go to the doctors as i was scared it was cancer, irrational i know but thats the truth of it

when the pain got so bad i couldnt ignore it anymore i aske my g.p at the time to take a look and was then referred to a private surgical consultant for diagnosis . i now have a new g.p who has dealt with dercum's disease before and has referred me to a specialist that is only about an hour away. i had my first ever epileptic fit today so i have now been put on anti epilepsy tablets gabapentin 300mg 3 times a day to go with the tramadol 50mg that im taking 8 a day of . has anyone here used these tablets for theyre symptoms? the doctor told me aside from the gabapentin stopping the epilepsy it would also help with the dercum's symptoms.

sorry if this introduction is a bit long winded i'll just give you a bit of background info to finish

im 34 yrs old


3 children

i have multiple lumps on my legs arms back and abdomen

im not overweight or underweight just average for my height

my main sympotoms are constant pain ranging from burning to tingling to feeling like im being eaten away inside, depression, anxiety, i have a large lump on my hip that is making it very painful to walk.

thanks for taking the time to read this


Post edited by: pcleaver, at: 04/15/2011 08:38 AM


04/15/2011 09:10 AM
Posts: 739

Hi Paul - Glad you found us but sorry for the circumstances. I have had DD symptoms for over 30 years and was just dx'd in January of this year so you are fortunate to have found a doctor that knows about dercums. Although it is less common for men to present with dercums and also rare to be average weight - it just makes you more special, lol!

Not sure how much information your doctor was able to give you about Dercums however you might find Dr Herbst's videos and the articles on this website helpful. I am working with a specialist in Toronto Canada and until now have not been taking any medication for pain and just living with it.

My dr just put me on Keppra which is also an anti-convulsive specifically for the Dercum's and Fibro symptoms. I know that Sylvia one of the other leaders in the group and with a great deal of experience also takes gabapentin with good success.

Although I have just started this medication a few days ago, I am finding less pain but am more emotional. My meds can apparently cause depression, sleepiness and confusion, so I'm watching to see how my body reacts but am hopeful that it is something that will help.

I am not familiar with anyone in the group also having epilepsy - but let's ask?? Anyone have a similar experience?

The one thing, above all that I want to share with you is that you are not alone. Finding out that you have a chronic illness can sometimes seem overwhelming and isolating but here we share ideas, support and most important of all a sense of humour. Welcome and I'm sure the other's will be along with their comments and insights....

04/15/2011 04:47 PM

Hi Paul!

Welcome to the group! I know of at least a couple of people who present like you - normal weight with visible lumps. You ARE special but not alone.

I'm glad you have a doctor who is familiar with Dercum's! That is something many people struggle with. They can be hard to find! What city are you near? We are always trying to help new people find doctors.

There are quite a few people who take gabapentin. I always say that it is one that goes both ways - we have people who do well with it and those who don't. I'm one who doesn't. In your case it may be doubly beneficial!

Dercum's is scary all on its own so feel free to jump in and ask questions.

I'm glad you have joined us!


04/16/2011 12:48 AM
Posts: 8
New Member

Hey there, I totally get the scariness of this disease. I, like many others, spent a very long time looking for the answer as to what was wrong. Took me many years and many doctors. I am so so happy for you that you got diagnosed quickly, or relatively so. My daughter who is about your age was diagnosed last year with lipedema/dercums and she too is of average weight. She is relentless about her diet, which is probably one of the best things I can mention to you. Diet can play an enormous part in how we feel. I am also taking Gabapentin, about the same amount as G'Sylvia....3600mg a day...but let me tell you, without it, I would be a wreck. I also take cymbalta. I have been taking Gabapentin for a while and my doctor does not want to increase it should I get worse. If that happens, I will probably try and switch over to an arthritis med (R/A) that Dr. Herbst has recommended.

This disease can be beaten! Maybe not cured right now, but it can be beaten. Keep telling yourself that and don't let yourself think otherwise. Same advice I give myself....

As for epilepsy, no I do not have seizures. I do have myoclonic episodes of spasms, but nothing so serious as a seizure. It can be quite un-nerving I know. My little dog has epilepsy and it terrifies her when it happens, terrifies me too, so not to give offense (like I am comparing you to a doggie), but I just understand how horrible it is. A friend of mine I used to work with, in healthier days, also had seizures and she used to describe the feelings to me. My heart goes out to you, but as I said, please don't give up. Everyone here on this group is terrific and although I don't sign on much, I think the world of G'Syl and all sufferers of chronic pain disease.

Many hugs, Terry

04/16/2011 01:13 AM
Posts: 8
New Member

thankyou for the positive words everyone its nice to know im not alone although it makes me feel bad saying it because i wouldnt wish this disease on anyone , my partner has been amazing since my diagnosis and considering that she has post natal depression and i know how hard it must be for her it is really appreciated.

feeling rough today got some new lumps coming up that are very painful but according to the doctor i saw the best thing to use for the discomfort and pain is cannabis so even though its illegal here im going to find some today and bake some cakes and maybe make some cannamilk too Smile

will let you all know how it goes Smile

thanks for being here


04/16/2011 02:44 PM

Paul, you made me smile talking about your "cooking". Do let us know how it goes. We know it's a possibility for many of us down the road.

We all say the same thing when people become one of us - we're glad youre' here but sorry it's because you have this. It does stink.

Glad you have a supportive partner!

Take care,


04/17/2011 02:54 AM
Posts: 3031
Group Leader
I'm an Advocate

Hi Paul..welcome to the group. I have to chime in and say that Gabapentin does help me. I also take tramadol at bedtime. I can take up to four but I usually just take two. They do use Gabapentin for seizures. My rheumatologist tried my on another seizure control pill about a year ago..but it made me feel funny...funny in the brain! My husband takes heavy duty seizure control med...has taken it for over 40 years. Some of the same meds help people with DD and your doctor said. It sounds like you have already found a doctor who knows what DD is...that is just great! If he helps you..ask him if we can put his name on this site for others to maybe go to him also. Will you be seeing a neurologist for the seizure disorder? Be sure and make up a list of all your meds and show it to all the doctors that you see...also tell them about your self medication as you could have a reaction using Rx meds with them. So sorry that you have this dreadful disease but I'm glad that at least you found a diagnosis. We can help you here with emotional support. Hugs to you, Grandma Sylvia

04/17/2011 03:32 AM
Posts: 8
New Member

well i've just woken up after the longest most restful nights sleep i've had in years , no pain whatsover and a few of the lumps actually feel less raised, i still feel really relaxed and unstressed the following morning . despite my plan to do some cooking after first of all smoking one joint i was incapable of anything more than laughter and eating .

i wont be doing this too often as its still an illegal drug in this country but for one night a week from now on i will be self medicating, be nice to have a pain free night to look forward to every weekend . i dont think everyday use of cannabis would be really benificial with its tendancy to cause paranoia,depression,anxiety,emotional mood swings.

ive noticed since starting the gabapentin my head feels really foggy and i feel like my ears are getting ready to pop all the time , also really buzzy feelings like an adrenaline rush . is this normal ??

04/17/2011 06:30 PM

People react differently to gabapentin. I'd call the doctor's office and ask. It may be a temporary thing but if it gets worse or bothers you, you might see about switching to something else. That seems to be one of the drugs that many people react to.

Glad you got a good night's sleep!

04/18/2011 05:19 AM

Hi Paul, I am a young one in this group....I am 33 and have had DD I believe since I was 17. That is when the painful masses started showing up anyway. I used gabapentin, and because it was not effective enough was switched to Lyrica.I am also on Cymbalta for the depression, but from my understanding it helps with nerve pain as well. I take Hydrocodone, and use Darvocet for a back up. I get really severe migraines as well. I have pain in my arms, legs, hips, abdomen, and back. It really is never ending for me. I just switched from a Nurse Practitioner to a Primary Care Physician due to lack of knowledge and treatment methods. I was found to have breathing issues as well. My PCP is going to do some research to better help me with this disease.

There are all different types of medications, just find the one that benefits you....

Also keep in mind most all of us are on antidepressants, that unfortunately is what comes with this disease due to the inability to cure, or treat it.

Dont mean to bring you down, but take care!

We are all here to help!


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