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Advice:
Remedies to Lessen Dercum's Pain
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Difficulties coping with pain caused by lipomas. I would really like to try some new methods to lessen the ongoing nagging burning/soreness felt everywhere, but more so along the back and, buttocks. What has been helpful so far while resting is to sleep on a 3inch latex foam mattress topper, using heat applications, or taking a warm bath. However, when up and moving around throughout the day, the annoying pain level increases and I feel so agitated, til I just want to say forget it and crawl back into bed. Any suggestions? Thank you for reading my post
Posted on 01/13/09, 11:24 pm
8 Replies Add Your Advice
Reminder: This is a support group for Dercum's Disease. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Advice:
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Reply #1 - 03/06/09  4:05am
" I have Dercum's disease and I have to spread the word of my discovery. SUGAR, SALT, MONO/POLY FATS, FRIED FOODS, PRE PACKED FOODS, COMPLEX CARBS, WHEAT, PINEAPPLE, MANGO, ORANGES, NON-ORGANIC FOODS, PROCESSED FOODS, RED MEAT, LAMB, SALMON, PEANUTS, CORN, RICE, DRIED BEANS, BOTTLED WATER, GRILLED FOODS, BBQ, SPICY FOODS, PLUMS, PEACHES, PEARS, MELONS, LETTUCE AND OR BROCCOLI FAMILY, POTATOES, COLD FOODS OR DRINK, (APPLE JUICE ETC) RAW FOODS, SOY PRODUCTS, TOMATOES, TURKEY, SQUID, TUNAS, SHELLFISH, COFFEE, ALCOHOLIC BEVERAGES, CANNED FOODS, ARE OUT AND ARE NOT AN OPTION TO EAT!! IN FACT, I ACTUALLY I AM WEANING MYSELF OFF OF FOOD ENTIRELY. IT'S UP TO YOU, THE FOOD WE EAT ON THIS PLANET IS POISON TO THE PEOPLE WHO HAVE THIS RARE DISEASE. I NOW HAVE DISCOVERED PURE VITAMIN DRINKS AND SUPPLEMENTS IS A NEW WAY OF THINKING..IT'S NOT EASY BECAUSE OUR SOCIETY IS A SUGAR CRAVING NATION.
CINNAMON IS NATURES WAY OF BRINGING YOUR BLOOD SUGAR LEVELS LOW..DO YOUR RESEARCH!
ALSO, I HAVE MANY OTHER HELPFUL IDEAS, BUT TO MANY TO LIST THAT I HAVE FOUND THAT CONTROLS THIS DISEASE...THE ANSWER IS NATUROPATHIC REMEDIES AND MEDICINE IN A NUT SHELL. I CAN GIVE YOU A TON OF INFO, JUST CONTACT ME PLEASE! "
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Reply #2 - 08/24/09  3:08am
" I absolutely agree about FOOD being poison, and everything you mentioned IS basically POISON. God has given us everything we need to survive on this earth, but MAN has destroyed the earth, and big corporations and Big Pharma have put the poison in our food supply and drugs in our drinking water along with the flouride, which is also toxic and poison. Raw fresh food is the only way. Do you know that SPLENDA, ASPARTAME & SUCRALOSE are ALL poisons?? DO the research. READ the labels when shopping and you will find so many poisons these money hungry profiteers add to our food supply. It is unconscionable!!!!
All natural is the only option in our toxic world today to reverse the damage and/or feel better physically.
There is a great website and I get a lot of my information there called: naturalnews.com
Knowledge is power!!!!
L.P. "
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Reply #3 - 03/13/10  3:05pm
" These people also have to eat the food and drink the water they have poisoned! The world is overpopulated and the earth is depleted of essential vitamins and minerals, this is why supplement companies are doing so well. "
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Reply #4 - 05/06/10  1:39pm
" OK, I see there are tons of food we should not eat BUT what can we eat? i just got dx'd with type2 diabetes and need to be extra careful with my eating. any helpful suggestions on what to eat? "
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Reply #5 - 05/24/10  9:06pm
" Just wanted to say that I appreciate all of the
suggestions and advice from everyone in this group. I'll try some of the ideas listed, thanks again to all and God bless. "
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Reply #6 - 03/20/11  6:59pm
" wHILE i DON'T DISAGREE WITH THE INFO YOU HAVE RECEIVED SO FAR, IT IS ALL DIET-ORIENTED AND PERHAPS SOMEWHAT OVERSTATED ( BUT ESSENTIALLY NOT OVERSTATED).
please look around this and other sites for other methods of management of pain and life-style since you may find helpful advice that complements what you have received already. There are some good articles by dr Herbst, who studies this disease and whose approach includes both symptomatic short-term management and naturopathic longer term possibilities.

I have seen numerous articles that say it doesn't matter what you eat or don't eat--the lipomas will still appear and progress....but i don't think the people who wrote these articles have anticipated such radical diet changes as in your Reply#1 suggestions.

Psychological state is also an activator of symptoms. Stress of almost any kind, (external) and anxiety, worry, depression etc (internal) will certainly make you more aware of painful states, and possibly make the pain worse-since the brain and the glands trigger numerous body chemicals in response to stress and your reactions to it. How to calm down when your pain is sending you into panic mode? Please tell me when you find out! best wishes. "
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Reply #7 - 07/07/11  5:49am
" I must apologize for my terribly long absence. I am promising myself and to all people with Dercum's to share my experience and expert advice. First off, there is so much to say and the details are extensive, but I guarantee what I have to offer in knowledge WILL be power to help better your lives or at least catapult you in the right direction. I've been dealing with Dercum's for over 5 years now and I've seen the best doctor considering this disease alone. The DOCTOR who SPECIALIZES in this EXACT disease is DR. KAREN HERBST located in San Diego, California. Dr. Karen Herbst knows her stuff and SHE can help with pain, dietary advice, ect.
Okay, now that this has been said.. I will mover forward in this train of thinking...

I have been diagnosed with one of the worst types of Dercum's. Not only are there tumors growing all over my body, but my bones, muscles and tendons are deteriorating or shall I say were deteriorating... Why do I say 'were?' Because I am finding ways to fight this condition. I am NOT going to let this disease KILL ME! AND by the WAY.. IT WILL IF YOU DON'T TAKE CARE and HEED TO THE WARNINGS of Specialist and today, myself.

Honestly, I don't eat much.. MEANING: I don't have a LARGE range of foods to pick from because my body turns EVERYTHING INTO POISON.

What do I eat? As Dr. Karen Herbst has strongly suggested is to EAT things that give the GUT REST. It's called a "GUT REST PLAN."

ACIDIC FOODS IS the target enemy for this disease-- this wraps it up for brevity sake.

ALKALINE FOODS IS GOOD and does not aggitate this disease so much.. but, alas certain foods break down to SUGAR and that IS ANOTHER KILLER for US with Dercum's.

So, IN ALL honesty.. I am healing because THE CHINESE KNOW what these disease ACTUALLY IS and they know how to cure it! My "bumps," as I like to call them are disappearing. Yes, I said it! GO to a Chinese herbalist and HE will help you. In their terms it's called, "phlegm-damp." They KNOW what they are doing!!!!! If you are skeptical, I understand, but honestly with all my soul I am HEALING. I am. So, what needs to be done is you find a herbal doctor that knows what PHLEGM-DAMP is.

REMEDIES FOR PAIN: Soak in a bath full of Epson salts (sea salts), sodium bicarbonate, and mustard seed. You can find these items in your bulk section of your grocery-market. Note: this bath is HOT! Make sure you don't overheat. :]

Also, Arnica helps for pain and is an effective dose for relief of pain. Arnica is natural is INDEED does do it's job well. I use it for every kind of body ache, including menstrual.

Personally my diet consists of: SQUASH! Mostly, I eat squash, chinese vegetables, mushrooms, ginger, cinnamon, wheat-free/gluten free oatmeal, and for bread because YEAST is ACIDIC, I eat tortillas that are wheat-free.

In all honesty, you can eat whatever you wish, but YOU will pay for it. This disease IS always waiting, always there, always hurting if you don't care to discipline yourselves and forget about the joy of CHEESECAKE, ICE CREAM.. sigh*, steaks, coffee... sigh*.. bread, cheese, ahhhhhh sigh*. Please don't get me wrong... I crave sugar and then I GO CRAZY.. but, it's all about thinking alternatively and finding ways outside this box. For example: Boiled apples are satisfying with raw honey. NOTE: Boiling apples does not make us sick, but eating them RAW does!

The most frustrating part is we can't eat things that are so called "healthy," or "normal," anymore-- that IS if you care to LIVE.


I have more information if you are interested, please contact me. "
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Reply #8 - 08/06/12  10:37am
" I was diagnosed with Dercums disease this last March after trying for a long time to figure out my pain. I researched and printed out the information on DD and took to my doctor. He agreed after looking at my pain journal that this was probably what I had. I researched and found Karen Herbst in CA. Saw her in March and she confirmed that this is my issue. Since then I started treatments. She stated I was the worst case she has seen in 15 years. So we went a little experimental for my treatments. I am using the lymphatic pump twice a day---Ladies--this is great to help with pain. My problem is after it moves the edema--I have a hard time getting it to stay moved and move out of my body--we are working on that. I am home now so I am experimenting with how often and so forth. I wear compression garments on arms and legs every day--and I have what I fondly refer to as my snow suit that I wear at night. It really cushions you and helps sleep with pain. This was recommended to Dr Herbst by my therapist for my compression garments. So 24/7 I am in compression garments. Then I am doing the pump twice a day for 1 hour each. Working on increasing if possible. I don't do anything without Dr. Herbst's advice. I also have mobility problems--I have tumors on the bottom of my feet and around my ankles--but the pain is better for about an hour after the lymphatic pump. I would suggest to everyone to do whatever you have to get to Dr. Herbst. She is the most knowledgeable in the country. Also, she discovered something new about the disease. I am very sensitive to the pain so she thought there was more going on. She did a punch biospy and found out that I have severe neuropathy of my legs--I also believe my arms are in the same condition. Other patients were tested and it was confirmed that they all had the same issue. Hang in there--Keep you chin up. I am willing to do anything to learn more. Will keep everyone advised on how things go. Get off the morphine and try the lympyhatic pump for pain. Probably will not work for everyone--but it is worth the price to work with. "

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