HERBS, MEDICINE, DIETS, and EXERCISE THAT HAVE WORKED TO BRING OURSELVES IN REMISSION
My mother and I got tired of over-exercising, under eating, and feeling shame from family and doctors so we finally researched and experimented until we were able to help ourselves.
I personally research
different avenues all the time. I am not sure how much you know about this
disease or anything that you have tried yet, but there are a few things that we
have tried that have helped and have given me some hope. A few things I know for sure, this disease attacks women at
hormonal stages of her life (puberty, period, menopause, child birth, etc.). I
also believe that allergies play a great role in this disease. Everyone I
know with this disease also has terrible allergies-environmental and
food. I have found that dietary changes, herbs and supplements have not
"cured" us; however, we have managed to stabilize and
even to take some baby steps in controlling this disease.
The first piece of advice is to immediately
stop eating wheat and all wheat products. That alone should give you marked improvement in lessening of painful legs. Try to remain as gluten-free as
possible because-g-f has a lot of processed carbohydrates that our confused bodies pack into our fat suits as adipose. Sugar also seems to be an enemy of ours. Carbohydrates and sugar turn to
fat in our bodies; protein and fat do not. Once our bodies stores carbohydrates as fat in our cells, the fats becomes one of three kinds of fat: adipose is our fat of choice for some reason. Adipose cannot be eliminated by diet or exercise, except for the obvious: STOP EATING FOOD YOUR BODY STORES AS ADIPOSE--WHEAT and SUGAR_ RATHER THAN BURNS FOR ENERGY. Avoid carbohydrates and
sugar, including fruit, as much as possible. Also try to stay away from chemicals, pesticides,
etc. It is a bit more expensive, but try to go as organic as possible (at least
with thin skinned veggies). Also even more importantly it is better
to get meat locally or organic. Due to the hormonal nature of our disease it is
important not to add more hormones into the diet. Grocery meat and dairy
products are filled with hormones! Hormones activate and aggravate our disease. I am not suggesting you go on a diet or
change your eating habits to lose weight and become a size 2, but rather to allow your body to heal itself. As a lipedema woman, you are no longer "dieting" to look "normal" or to be accepted. You are fighting for your life, just like a diabetic whose lifestyle must change FOREVER.
Also we have found that certain herbs/supplements are great for
our bodies. Brown seaweed and green seaweed seem to help with allergies and to expel
a lot of fluid from our legs. I have also recently begun to take Alpha Lipoic
Acid, Cissus, green tea extract and garlic supplements as well. The jury is
still out on these products since I have been using them only a short time. The following remedies here are those which we have experimented with and our bodies miss within a few days.
I take horse chestnut capsules to keep my leg
pain and swelling down.
Both my mother and I also take bio-rutin dietary suppliments on a daily basis to keep capillaries open and circulation improved. Rutin, the main compound used in Europe for lipedema, is an anti-inflammatory, cancer-fightung found naturally in black tea, noni, and apple peel. It also stops bruising and bleeding which are huge health issues with lpedema. Rutin is combined with bioflavinoids which are extracted from lemon, orange, and grapefruit, and hesperidan, a compound extracted from the three citrus fruits. Bioflavinoids are thought to help reduce allergens, viruses, and carcinogens. The product we use can be found at most online vitamin stores (with huge cost variances so shop around and pay attention to shipping which should be free or flat $5.00 per order.) The product is : COUNTRY LIFE BIO-RUTIN 500 mg/500 mg.
My mother also takes Modifilan, which is a black seaweed off of the coast of Russia. Modifilan was used to cure radiation poisoning from the Chernobyl Reactor explosion victims. Because we are predisposed to store any chemical or food our bodies don't recognize, keeping our cells free of debris is essential to keep us from cascading into other diseases. At mom's age, she had liver spots, moles, tags, blotches from sunburn, and other miscellaneous flora. Over the course of a year, they all disappeared, including an innocent non-healing bump on her cheek. After eight months on Modifilan, the spot turned into a small chocolate chip-looking spot that nonetheless had very deep roots. In a few weeks, the spot dried up. For a few more weeks, the spot tried to re-emerge and then it went away. We believe Modifilan is essential to healing because it cleans up our fat cells and drives out any chemicals our cells have harbored. For that product, go to www.modifilan.com. Be forewarned, within a few days of taking it you may breakout with non-itching painless sores. You may think you are allergic when you firs take this product. Maybe you are but for mom, those spots were debris working to the surface of her skin. That too went on, a spot here and there, especially on her breasts, and once in a symmetric waffle-pattern on her left breast where she had undergone a few ultrasounds.
I suggest some type
of an allergy medication (I have found Zyrtek to be the most effective) to cut
down on some of the allergy flare ups. The more you heal your body, the less
damage you will continue doing to your lymph system. There are some excellent generic Zyrtek. I get 300 for 20 dollars--almost a years's supply.
We have also found that the anti-depressant wellbutrin has an
effect on our legs. It keeps the swelling and pain down. My mom found an intense scientific study explaining why bupropin works. This drug does not affect our moods but it does take the hardness and inflammation out of our legs.
For water weight reduction you cannot beat raw seaweed and seaweed salads and these should be a consistent part of your diet.
Two books that I have read recently that gave me a lot of
information on diet issues concerning health that seems to match up with
lipedema issues are Dr. James Carlson “Genocide: How Your
Doctor's Dietary Ignorance Will Kill You!!!! And Timothy Ferriss “The 4-Hour
body…” You can go to www.drjamescarlson.com and read the first ten chapters of Dr. Carlson's book for free. I
think his information is very important for us lipedema girls. Tim Ferris has a
blog that talks about his ideas as well. I follow a combo of both of these
diest and have been losing very slowly, sometimes only ¼ of an inch per week.
Considering our disease is listed as rare and incurable and assures women that
there is nothing that we can do about getting larger and larger, I am happy
with my ¼ inch loss per week. My ankles look completely normal and my calves
are starting to get that line when I flex them so I know I am reversing some of
these effects. I have only recently stumbled across Tim Ferris’s work. He has
some brilliant ideas about ice therapy. This weekend I am going to purchase
some ice packs and put them on my thighs for 30 minutes every night to see if
his theory works.
In Germany doctors are studying a new type of liposuction. It has
to do with heating up the fat before sucking it out. This is to avoid damaging the
cells. This is very important with Lipedemea people because wherever there is
damage of the cells, you will often get 10x worse. This procedure is promising
and seems to have little side effects so far. Very few doctors are doing it and
I have no idea what the cost is.
Excercise
is fine if you take percautions. I do 45 minutes of Zumba cardio
dance every day and have recently incorporated tim ferris's kettle ball
excercises. Knees are commonly the first problems with lipedema women so
becareful not to over excericise as you will add to much stress to your knees.
My mom cannot do the aerobic excericise as her knees are all ready bone-on-bone. She can do a recumbent bike; this does not affect her knees. When
doing any excersice you should make sure to wear garmets that offer
compression, like spandex type material. This does not allow the fluids to
build up in your legs and forces the fluid to move. If you have access to a
pool, that is the best option for lipedema women due to the natural compression
that the water offers our bodies. Hope this helps!
Hopefully all of this information gives you a start. We have been at this for quite sometime and although I do not have a
medical degree, I would have to say I am more informed than any doctor I have
spoken to about this issue. As most of you
can tell by your experience with your doctor, this is not a disease that is
very studied or understood. You are the foremothers of generations of women who will be cured of a disease barely known to us.
Don't beat yourself up. You simply have a disease. This is NOT NOT NOT your fault. You
are unfortunately in this suit that you have to carry around. Like I tell my
mother we are not fat, we are adipose!
Stefanie
|
WRAPPING YOUR OWN LEGS DAILY IS ABSOLUTELY NECESSARY. THEY LOVE YOUR TOUCH.
Many of us have gone through the expense and ultimate discouragement of allowing professionals to wrap our legs the way they wrap lymphedema legs. We purchased $250 worth of garments and wrap, made co-pays, and found a way to get wrapped 3-5 times a week. I went to a Vodder trained physical therapist, and the result was phenomenally positive, beginning with her lack of judgement towards me. She understood that lipedema is no different than MS or Diabetes. I learned a lot from her about my legs.
I was able to keep the wrappings on for between 12 and 15 hours before pain and/or leg cramps caused me to rip them off. Wrapping eliminated the water I had accumulated over many years, and my legs were visually changed before my eyes. The process takes a month to drain all of the water. Then I was quickly fitted with support hose because water returns almost immediately, undoing the month's work of wrapping, without nearly 24 hour a day support from compression stockings. When the month was over, and I was then fitted for support hose and instructed by a fitting specialist, I lasted wearing the compression stockings for two days.
A major characteristic of lymphedema is that it is mostly painless. On the other hand, LIPEDEMA, also referred to as PFS or Painful Fat Syndrome, is intensely painful. A kitten walking across an upper leg, sexual intercourse, even clothing, the slightest contact, can cause lipedema women to wince or cry out from immediate pain over and above the already chronic, abiding, and ever-present deep bone throbbing in their legs. Our legs may be so hot from inflammation that they are several degrees hotter than the rest of our body and even through clothing, heat can be felt radiating from our enlarged draping knees and lower legs. A lipedema woman also may experience cold chills ripple over her body at the slightest weight of a summer sheet, like a sunburn chill. So, imagine, if you will, a lipedema woman who is probably already awkwardly balanced smaller on top and much larger on the bottom, who may not be able to bend and rest one leg on top of the other, and who is in intense pain, rolling on compression stockings that cut across her inflamed skin and tissue as she rolls. Under the best of circumstances, a lipedema woman would have to be a contortionist to pull hose the size of a small child up a leg so hard and heavy that she cannot always lift it from a standing position over a curb. Packed with adipose and water, lipedema legs are too heavy for most people to even assist in helping a woman pull her compression stockings over her legs.
The literature says most lipedema women give up on support hose; now you know why.
The summer after I was diagnosed, the pain in my legs reached an excruciating level eight. The humidity, a natural enemy to a woman with lipedema, was high so my pulsating and burning lower legs and ankles were filled with water. I knew that I had to find a way to wrap my legs. The next day I went to the local medical supply store and found a way to improvise. I have now wrapped my legs daily for nearly two years. I experience intermittent inflammation pain and my lower legs have lost several inches. )Back and knee pain are never gone). The shoe laces I wore before wrapping were difficult to tie at all; after a few months, my lymphatic system pumped so well, the shoe laces pulled the shoes tight and made big bows.
After the water completely left my ankles, about eight months ago, I felt a very hard, marble-like covering around my right lower shin. My primary had never felt anything like it on a human being. Very slowly, that hard mass has melted away. I assume it was very very old adipose at the sight of an injury. (For some reason, wherever a lipedema woman sustains a deep wound, adipose can pack in hard around it. That is why elective surgery should be carefully considered)
WRAPPING PROCEDURE
1) I buy discount surgical stockings at www.discountsurgical.com because they have a generic brand that is a third the cost of the name brand stockings. I buy: Opaque support. Thigh high with silicon x-firm open toe style #A313. I cut out the bottom of the thigh high stocking above the narrow ankle. This way, I can alter it to fit knee high comfortably without pain or terror. These $26 dollars a pair compression stockings last for months and do not ravel when I cut them. The tricky part to the stockings is tucking the end under your toes if you are putting on shoes. This stocking step cannot be eliminated. If your legs are too big for thigh highs, and that is really possible, use spandex leggings or even a stretch sleeve, modified from one of your silky blouses. If you do not follow the stocking step, your bandages will cut into your legs.
2) I purchased an abdominal belt at the medical store. Your abdominal belt must be 4 paneled (stitching between panels) and velcro closure, not eye and hook. You cut the belt in quarters, between the stitching. I purchased my abdominal belt from www.healthproductsforyou.com a Reliamed brand 4 panel adjustable 4 panel velcro binder#BD8811. The idea is to create a cone-shape wrap that provides consistent gentle pressure to your swollen ankles and gentle pressure on your legs up to your knees.
3) To fit: you simply put your adjusted knee high stockings on then at the ankle begin wrapping your legs with the elastic panel upward like a spiral. You never run out of this wonderful elastic support because you can connect two, three, or all four pieces, attached end to end, depending on the size of your leg. At first it is a bit painful because your skin is readjusting--but painful only only to the skin. Your legs begin to feel no pain and I believe mine actually began to express gratitude to me. When I put my wrap on, my ankles seem to "let go." In the beginning, you may want your wrap to begin at your toe line if you are in stage 2 lip/lymph as there will be puffiness even on the tops of your feet. If you are faithful to wrap, that puffiness will go away and you will fit in shoes again!
The stockings last 6 months or longer and the velcro strips I guess a year. The total cost to you is approximately $50 and even if you can only lift your legs with assistance your caregiver can help you without injury to him or herself. Most of us, can wrap ourselves. PAIN IS NOT GAIN WITH THIS PROCEDURE. Gentle consistent support somehow activates the lymph system to work on its own. After good advise whispered in my ear by a doctor, I would not personally use the electronic pumps because they can push water to your heart and cause congestive heart failure. Lipedema women I believe need to work on their lower legs and ankles, not the entire leg. Our weight is adipose, not H20.
I believe this process works well for anyone. My sister only has swollen ankles after sitting at the computer for a long period of time. She uses them and hers have taken away leg pain and even eliminated a few fatty bumps in her foot. For end stage women, which means permanent secondary lymphedema has set in, wrapping keep legs stabilized only so long as we wear them. Water will eventually return though mine has never completely returned even if I do not wear my wraps for a few days. As soon as I wrap oxygen returns to my blood. I involuntary take a great deep breath that fills my lungs and I breathe better throughout the day. After consistent use for two years, and some easy chair exercises (tightening muscle groups), my cardio-vascular system is much improved.
WRAPPING ALONE HAS NOT HEALED ME
There is much more to getting the inflammation that causes the pain to abate and to soften the hard sometimes tumorous adipose in our legs. I will soon add a video out demonstration of this wrapping procedure. However, the doctor is right. You will never wrap fat away. You wear the wraps to stop end stage progress--secondary lymphedema at the ankle--swamp water that eventually compromises your vascular system. If you are in end stage, as am I, the wraps are curative but not preventative. If you are not in end stage, they will keep your ankles from pooling and making your legs a size larger by nightfall. You must do this for yourselves. Diabetics don't refuse medicine until they are very progressed. You don't have to get to end stage, ever, and your daughters, need to grow up with healthy lipedema practices early in their lives. Personally, wrapping beats daily injections common to other diseases. Sadly, my father died of lipedema in February (no it is not just a woman's disease). I will not be graphic except to say that you and your caregivers need to work diligently to keep your lipedema in remission. Without proper diet and wrapping, and depending on the severity of our disease, mild to extreme, this is a fatal disease as is MS or diabetes if untreated. However, also almost like ever disease, proper exercise, food, and wrapping procedure can help us to go into remission, stabilize, and maintain our health and longevity.
Maggie |
Our Protocol for Remission
