'Dercums Disease'

Discussion in 'Fibromyalgia Main Forum' started by lightspirit, Sep 23, 2003.

  1. lightspirit

    lightspirit New Member

    Hello Everyone!
    My name is Judith Light (Lightspirit) I used to be on this board for a long time, but stopped last year. I have just updated my profile if you want to know more.
    However, I have some interesting things to tell you all if interested.

    Firstly I have lost 50 lbs in weight (thats 22 kilos) and have gone from a size 20 to a 12 (Australian sizes) and am feeling fabulous! Still in pain but looking great!
    Write if you want to know how I did it and I will tell you.

    Also - and the real reason for my post, I found out what all the lumps are in my lower back that I thought were fibro, they are actually tumours made of FAT! They are called Lipomas.
    Has anyone here ever heard of or been treated for 'Dercums Disease'? I have six lumps up to 6cm in length in my lower back, buttocks. They can be malignant but most likely they are not.

    What is very interesting is the cross over and connections between Dercums and Fibro. Your 'lumps' may be this. As for me I'm off to get a referral to an oncologist today to organize a biopsy.

    If anyone has this can you please post.

    If anyone from the past remembers me please say hello, if not let me tell you I now live, sucessfully with chronic pain. With good meds (endone) plenty exercise (walking, yoga and pilates) sleep (thankful for Ambien)and taking good care of myself, I am at peace with myself.

    Love to you all and have a good day being in the present moment whatever it is!
    Judith Light

    [This Message was Edited on 09/23/2003]
    Edited to remove; URL
  2. Hinemoa

    Hinemoa New Member

    I would like to know how you lost weight but I am very wiggy about posting my e-mail address on the message board. We have been advised not to many times, I guess lurkers have taken advantage of some. Can you give us a summary here?

    Thank you,

  3. lightspirit

    lightspirit New Member

    Dear Sandra,

    Here is a document I wrote for anyone interested in how I lost weight, I hope you find it helpful.

    This is the plan I devised for myself in order to loose weight, get fit and lower my blood sugar levels so they would not ‘peak and trough’ but remain stable, enabling me to loose fat and stabilize insulin levels.

    I was 91 kilos, I am now after ten months 69 kilos. I intend to reach my goal weight of 65 kilos within the year but this is not a ‘diet’ it is for life, so I made it ‘sustainable’ according to my needs and tastes - you can do the same for yourself by just following a few basic tips.

    1. These foods are absolutely OUT. You cannot have them so get used to it!
    Do you know that potatoes will raise your blood sugar level quicker than pure white sugar!

    I use for a sugar substitute either STEVIA powder (health food shop, about $14 (Australian) and will last months, it is 100 times sweeter than sugar and good for your pancreatic function) or EQUAL which I find to be the best tasting sweetener in both tablet and powder form. Powder is good for fruit and yogurt. Tablets best for drinks. Stevia is good with lemon juice and water for a nice drink instead of cordial.

    2. Bread - You can have three slices of bread per day, either BURGEN RYE or PERFORMAX(Australia) health food shop will freeze OK. Both these breads have only 11 to 14 grams of carbohydrate. All bread (and preferably most of your daily carbohydrate intake must be eaten before 2pm each day).

    3. You should aim to have no more than 70 carbs per day. You will get energy from good fats instead of carbs. I have all my 70 carbs in three slices of bread and whole milk, plus a little yogurt and fruit. Almost everything else is virtually carb free or does not even need to be counted. For years I ate under 1200 calories per day and gained 20 kilos! BUT, when I looked at my carbohydrate content, I was eating 200 carbs per day! No wonder I was gaining weight.

    4. NO EATING ANYTHING - after 7.30pm each night. When you sleep, this will keep your blood sugar level low. You can however, have drinks that will fill you up like cocoa made with milk and sweetener. If desperate, each some protein only.

    5. Protein sources are all made from animal products including meat, chicken, fish, cheese, milk etc. This plan lacks fibre, therefore it is absolutely important to ensure you go to use your bowels every two days. I use a herbal powder. It is really important to keep your body constantly DETOXED at all times. As this diet is so low in fibre you may become constipated, so avoid this by using the herbs.

    6. Here is a list of the fruit you can eat:
    Berries including strawberries, raspberries, blueberries and blackberries. Fresh or frozen, I use frozen when not in season as they are expensive. You can use them with yogurt, or in smoothies or alone or smashed up on toast as pretend ‘jam’!
    Do NOT eat - bananas (the highest sugar fruit there is) pears, mangos, grapes, cherries, or apples (1/2 a granny smith once in a while) Really, Berries are it. They are yummy, high in fibre and delicious, low in natural sugars. A small tangerine is OK or a kiwi fruit once in while.

    7. MOST IMPORTANT - Fat does not make you fat - Sugar does!
    Remember this. Sugar, including not only sucrose, but glucose, lactose, fructose and galactose are all sugar. Honey is sugar. To the body, sugar is sugar. There are many high sugar fruit and veggies, carrots and beets are high in sugar as are the bananas mentioned above. Sugar is contained in many really made foods liked canned tomatoes and many sauces, you will have to really read all the labels. Be prepared for shopping to take a couple of hours till you know what you are buying. Buy or download a good carbohydrate counter.

    TIP - In the supermarket, you will walk around the ‘edges’ meaning the deli, the meats, the veggies, etc...the stuff down the isles is all CARBOHYDRATE!!!!!!

    8. Pick you fats. Good fats are avocado, olive oil, butter (yes butter but in moderation as it is ‘saturated’) cream is carbohydrate free but be sensible! Nuts are wonderful, some nut better than others. You can do a lot with nuts! Throw some almonds on a piece of chicken while it is roasting in the oven, put some pistachios in your salads and pine nuts in stir fry's. Make pesto with basil and put on veggie’s and meats. Get used to looking only at the carbohydrate content in foods, don’t confuse yourself with looking at the kilo joule or calorie content as it is not relevant here. Always carry a small container of nuts with you in your purse for emergency eating! Pistacios or almonds are best.

    9. You will not be hungry! You will feel physically stronger and have more energy on this plan, your blood sugar will remain level and you will burn up fat stores but exercise is a must, not an ‘option’ it is six days a week and no missing!


    Breakfast - one slice of rye toast with butter and vegemite or a couple of times a week, some porridge but not the quick kind as it has a high glycemic index. There are about 20 carbs in porridge but twice a week it is good for your digestive system so have it - make it with water then add cream (make sure you do not get ‘thickened cream’ as it contains gelatin. Gelatin is made from the hooves of horses so I do not eat anything with it in including cream). Add powdered equal to the porridge, it is very nice like this and filling.

    I enjoy my slice of toast and a cup of coffee with cream and sweetener or full cream milk. (tip - do not buy any ‘LITE’ products, they remove the fat and replace it with sugar, so they are low in fat and higher in carbs than normal products). An exception is yogurt. I like natural yogurt, it has 8 grams of carb per 100 g yogurt and very low in sugar, to this I add my own fruit and equal powder.

    You can have eggs for breakfast if you want and bacon but I choose not to. Two free range eggs with a slice of processed cheese in the middle is nice with half a tomato.

    You can have any protein if you like it, salmon and eggs, steak, ham or cheese but not too many people would like this first thing.

    11 am - have a snack. I have my fruit (berries) with yogurt, or I add some water and sweetener and make it into a smoothie instead. A small handful of nuts is good or a couple of slices of cheese or ham. The frozen berries will thaw nicely on very low for 5 min in the microwave but are better left to defrost overnight, then add sweetener as they are bitter. Or, you can save your fruit for later and make it into a desert!

    Lunch before 2pm.
    Your two slices of ‘performax’ low carb bread with any protein.
    I like tuna and lettuce with Mayo (full fat) and butter
    Ham, cheese and ½ tomato toasted. Never have more than ½ tomato, it’s high in sugar.
    All salad stuff. Use red onions, low joule gherkins, cucumbers, avocado, chicken, meat or sliced deli turkey. Use whole grain mustard (read the label!) Watch the sauces for sugar. Good sauces are some Oyster for stir fry, Soy (top quality has few carbs). NO tomato sauce sorry!
    I like cheese on toast with chilli sauce (not sweet chilli sauce) or Worcester sauce.
    I prefer tuna in oil with flavours like lemon and pepper, they are all 100 grams and no carbs. Choose in oil rather than brine. Or buy in brine, drain and replace the oil with olive oil. Be careful with canola, it is not a very good oil.
    All tuna, smoked salmon with capers and red onion is nice on toast.
    You can make a little pizza for lunch using a small wholemeal pitta (20 carbs, less than the bread!) I put on it some chilli sauce, anchovies, olives, capsicum and red onion, with cheddar and bake for 12 min at 220 degrees. Delicious!
    Make this up in packs of six and freeze for lunches during the week.

    Snack about 4pm (if required).
    Nuts, or other protein source carbohydrate free.

    Any protein source with salad or veggies.
    I like frozen Dory. I use the tubes of chives, lemon grass, chilli and garlic to flavour the fish, then squeeze lemon juice and pepper over, Bake in foil for 12 min at 190 degrees. Serve with frozen micro waved veggies. I like the frozen Malaysian mixed veggies of snow peas, mushroom, bamboo shoots etc. Frozen veggie’s are peak freshness if you cannot get fresh.

    You can have as much of these as you want:-
    Frozen fish in cheese sauce with fresh cauliflower and parmesan cheese
    Mushrooms (do in small amount of oil and butter mix and fry)
    Bok Choy, broccoli, cauliflower, snow peas, zucchini, all lettuce's, cabbage, brussel sprouts, onions, garlic, ginger and chilli, most veggie’s.
    Really the veggies to avoid at all costs are sweet corn, potatoes, carrots and beets. Some pumpkin is high in sugar as are many melons.
    You can make a kind of ‘pretend’ mash with soft cauliflower and lots of cheese (you can also turn this into a thick soup with a blender).

    I also have a stir fry with fillet steak and veggies and oyster sauce.
    Fresh salmon steak with asparagus or broccoli (make sure it has not been frozen if you want to freeze it yourself).
    Chicken (I buy Leonard's breast pieces) roasted in oven in foil with salad or veggies
    Greek salad with full fat fetta cheese, onion, lettuces, olives, nuts and dressing made with olive oil, balsamic vinegar, mustard, garlic and lemon juice. Or Paul Newmans balsamic is very nice but expensive.
    Eggs, scrambled or omelette with cheese or mushrooms inside with ½ tomato and cucumber on the side.
    Tuna salad ( I prefer Sirina Italian style tuna or with chilli)
    I eat fish 4 times a week but you may prefer another protein source.
    Stir fry fish and veggies with chilli

    Eventually, you will get used to not having pasta and rice (I used to live on it!) If you absolutely cannot live without potatoes, just have half of one before 2pm but remember, once you raise your blood sugar level it will stay there for hours and you will have taken yourself of of the weight loss 'zone' which is where you want to stay.

    Most of my 70 carbs, are from the 3 slices of bread and milk in drinks during the day, this is my personal choice but you may choose differently. This works for me. You may want to begin on 100 carbs then decrease it when you cease loosing weight by 5 carbs at a time. When you have not lost weight for 3 weeks, it's time to either cut the carbs further or increase the length and amount of exercise. But, less than 70 is not good for you as you need energy and do not want to feel fatigued.

    That’s if for the days eating now for drinks...

    I drink coffee, Colombian and decaf I drink tea (organic, tannin free) all with full cream milk and Equal.
    I like cocoa at night (NOT drinking chocolate just pure cocoa) with cream and equal.
    When I drink milk alone, I drink low fat to lessen the fat content of the day.
    All herb and fruit teas with stevia.
    Wine, red - maximum two glasses. Or one glass a night with dinner or afterwards.
    Scotch with diet dry ginger (this is the only carbonated drink I use, I remove the bubbles with a straw to flatten it first or have iced water instead) if I feel like a drink.
    Carbonated drinks are really awful for you. Low joule cordial tastes terrible but you can get a diet cranberry which is nice diluted.
    Lemon juice with water and stevia, warm or cold. Nice in the morning to get the liver detoxed.
    Water and lots of it. As much as you can drink at least one litre on top of other drinks like coffer. Fill a 500 ml bottle twice and drink during the day at room temperature. Boring but good for you!

    One day a week (mine is Saturday night!) I have a treat. Usually ice cream full fat, mixed with ½ cup chopped pistachio nuts and one square of Lindt 70% cocoa chocolate grated over the top, with my morning fruit.
    Or, whatever you want to a maximum of twenty carbs. Don’t count this in on treat day!
    I do have one piece of Lindt chocolate per day, it is 80% cocoa and only 2 carbs per piece.

    Buy this tape YOGALATES by Louise Solomon
    It is a combination of Yoga and Pilates and is great for people who don’t like to exercise.

    Do this entire tape every second day, it takes one hour and is excellent. Hard at first, then you can do it with your eyes closed after a while - it gets easier and you will be amazed at how your body will change shape.
    On the second day, do a 40 min power walk (brisk) stay loose and go as fast as you can. Make a ‘walking track’ around where you live.
    Have Sundays off!

    Before you begin buy some good digital scales that have 200grm increments so you can see the weight come off.
    Begin by weighing yourself unclothed in the morning after urinating, do this every single day.
    Record your weight daily and remember, you will build muscle which weighs more than fat. If your weight loss slows (and it will sometimes ‘stick’ for up to 3 weeks before it moves again but keep going....) Measure yourself. You will see you are smaller even if weight is the same.
    Begin by recording your bust, waist, hips, upper arms, calves and thigh measurements.
    Pick a day (mine is a Thursday) to measure yourself once a week and record in your book.
    Do not be discouraged when you ‘stick’. This is when most people fail.
    If you continue, so will the loss.
    As you do this, you will have to work harder at exercise to maintain the same level of weight loss as your body will be getting fitter.
    YOU MUST ALWAYS do the exercise in the morning to put your metabolism up for the day or it’s wasted effort. Make exercise a priority.

    As you become smaller, happier, healthier and fitter it will become easy!
    Aim for a loss of one kilo per month minimum, have patience, it took a long time to put it on.

    When you walk, visualize the numbers on the scales going down, visualize yourself as you want to be, talk to yourself with confidence.
    Do this for you, no one else. You will succeed.
    Be clear and determined. Make no excuses no matter what happens in your life.

    Make sure you get 8 hours quality sleep a night.
    Do not skip breakfast.
    Do not skip exercise.
    If you go out, take your own food. If you break the plan, just carry on regardless.
    Do not throw the baby out with the bath water!
    Every day - choose again to succeed.

    If you are depressed get onto St Johns Wort 2000 mg daily (health food shop)
    If you are lonely, go out.
    Deal with repressed anger, self-sabotage and old wounds by reading and learning about yourself.
    Make yourself a priority above all else. You will then be kinder to others.
    Find out why you are unhappy with yourself. Heal it.
    Find out why you are sick and make peace with your body.
    Stop emotional eating.
    Using food is not a reward for anything.
    Forgive and be forgiven.
    Let go of negative people and end destructive relationships.
    Quit a job you don’t like.
    Move from a house you don’t want to live in.
    Make your home a sanctuary, a place of peace.
    Get rid of all your rubbish! Clean up your act!
    Throw out your old clothes, if you have not worn it for one year you don’t need it.
    Get your finances in order, live within your means.
    Find out who you really are.
    Retail therapy is good for you :)
    Don't forget your sense of humour, embrace the ridiculous!

    Take a good B complex
    1000 mg ascorbic acid powder (vitamin C) in two divided doses per day
    Use a little ‘Inner Health powder’ in your yogurt ¼ teaspoon daily for good digestion.
    Use the laxative herbs every second day for detox

    Your hormonal status.
    Have a thyroid test before beginning. You must be tested for free T3, T4 and TSH. TSH alone will not reflect your true thyroid status.
    Find a good doctor who listens to you.

    If you are menopausal, consider all the aspects of this and become informed.
    Remember to know when your period is due, your weight can go up by a kilo - don’t panic it will drop when your period is finished.
    Sugar craving will go but it may take up to a month. Be patient.
    Instead of thinking what you are depriving yourself of, consider the gift of getting healthier.

    This has worked for me, it can work for you also.

    Two excellent books to own are
    Protein Power by Michael R. Eades
    The Zone by Barry Sears
    Buy them!

    My plan is a combination of the two books above with my own tastes and desires considered to suit me and make it sustainable. I was wrongly diagnosed with diabetes one year ago, I believe I have stopped myself from becoming a diabetic. I have gone from a size 20 to a size 12/14 and am healthier and fitter, have a better outlook on life and lots of new clothes! I have lost 50lbs in under a year.
    I also have chronic pain from fibromyalgia and numerous other physical problems, all of which I have leant to embrace and live with.

    Best Wishes

    [This Message was Edited on 09/24/2003]

    Edited to remove; URL
  4. leokat

    leokat New Member

    on the A'Kins diet. However, at least there seems to be a reasonable amount of veggies in yours. Also, the porridge twice per week must help boost the fibre levels.

    Well Done Judith. Living with fibro (or any other debilitating illness) is so draining making progress in other areas is a huge achievement.

    I *really* need to diet right now. I have always been large but have put on so much weight over the past five years or so. The problem is I am wary of trying another diet as it seems every time I try I end up 'rebounding'and putting on more weight.

    I have a HUGE appetite (partly brought on by constant comfort/boredom eating, which has expanded my stomach and made me immune to the signals telling me I am full; and partly due to a constant search by my poor fibro body craving a quick fix energy boost). I know I eat enormous quantities of sugar rich foods and reading your list just made me shudder. Almost all of the foods I use on a daily basis come under the high sugar/carb headings (rice, pasta, potatoes, carrots, fruit - bananas, apples etc).

    I have three worries about your diet. The first is that it simply won't satisfy me. I am convinced that if my main evening meal doesn't contain a large quantity of high carb food I will be hungry and lethargic. Secondly, I am on a low income and am worried that the diet will work out expensive (if I am to eat enough meat, fish, berries, and fruit etc to satisfy me and enough butter, cream etc to make my meals interesting and tasty). I can see that there are things I can do to save money (for example make my own yoghurt) but at the end of the day good quality meat, fruit and veggies cost (especially here in England where I live).Thirdly, I have IBS (irritable bowel syndrome) and am concerned that this diet might make it worse. I have spent so long finding foods/brands/recipes that don't (though I have not completely got on top of things. I know that for me whole grain bread would be out, also too many nuts and berries. Judith do you have any info re: the effects of your diet on ibs?

    Maybe I'm just making excuses for myself but I'd really love to hear your thoughts on what I have to say Judith (or anyone else really).
  5. Hinemoa

    Hinemoa New Member

    Thanks Judith...you really have put a lot of thought into this!

    I will copy it off and study it in hardcopy. I don't do too well reading off the screen.

    Thanks again,

  6. Shirl

    Shirl New Member

    Welcome back, glad to hear you are doing so well. Its been a longtime since you have been on the boards.

    Lots of great information too, I am sure a lot of us will benefit from it, thanks.

    I do recommend that you read the 'Messageboard Rules' on the right side of this page, printed in blue. There have been a lot of changes since you were here last.

    For one, we are not allowed to give any URL's on the board or in the Profile's.

    Again, welcome back.

    Shalom, Shirl

  7. Mikie

    Mikie Moderator

    Welcome back. I'm glad for your weight loss. Good for you.

    I got a fatty mass on my right thigh. My doc told me to massage it and if it were just a fatty deposit, it would dissolve. Fortunately for me, it did. It had gotten pretty big.

    Love, Mikie