Thursday, July 23, 2009

POTS (Postural Orthostatic Tachycardia Syndrome)

Postural orthostatic tachycardia syndrome (POTS) is a condition of dysautonomia, and more specifically, orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. This is often, but not always, accompanied by a fall in blood pressure. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44 and 60%, respectively. Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down. Symptoms present in various degrees of severity depending on the patient. POTS is a serious, though non-life threatening, medical condition that can be severely disabling and debilitating. Some patients are unable to attend school or work, and especially severe cases can completely incapacitate the patient.

(Great video on POTS symptoms and what is is like to live with POTS)

Dealing with one chronic illness is bad enough, but dealing with two can be unbearable at times. I have been dealing with EDS all my life, each year adding on new symptoms and more pain. Along with the symptoms of EDS, I have been dealing with my 'heart problems'...that was the term I used to describe the symptoms of my undiagnosed POTS. They included severe palpitations, dizziness, chronic fatigue, nausea, tightness in my chest, and passing out.

The symptoms started in my early teens, but weren't what I considered severe - some palpitations, some migraines, some fatigue. In my early twenties, the symptoms started to get worse. I had such severe migraines that I was in a migraine study at UCLA, in which they labeled the cause of my migraines 'undetermined' and said they couldn't help me anymore. I had bouts of passing out quite often, sometimes these accompanied the migraines and sometimes they didn't. I passed out at random times in random places: at home, at work (one time, when I was working for an airline and was checking in customers at the gate, I collapsed and caused a bit of commotion from the passengers and my coworkers!), even driving in the car (yes, scary!). The doctors I was seeing at the time had no clue what was wrong with me and some said it was all just in my head. My occasional heart palpitations became more frequent. I was exhausted more and more of the time. The symptoms were getting pretty bad by 2005.

When I went to Johns Hopkins in June of 2005 and was diagnosed with EDS, I mentioned these symptoms, and the doctors said I probably had POTS (I didn't know what that was at the time), but that it didn't seem bad enough to cause concern, and I didn't need to do anything for treatment other than drink lots of water and eat lots of salt. They said they weren't going to do any formal tests at that point in time. For the next two years, I just took their advice, figured I probably had POTS, but there wasn't anything I could do, and that was that.

From 2005-2008, my symptoms got pretty bad. I was having a hard time mustering up energy to do anything on daily basis. I was dizzy and lightheaded 100% of the time. I was nauseous always. My heart raced all the time, and when I would have a really bad 'episode' (what I called my 'racing heart'), I would be worn out all day. Some days, I didn't even know how I was going to work, let alone get up and move around the house. I knew something was really wrong, so I started to investigate that acronym the geneticist had used: POTS. Postural Orthostatic Tachycardia Syndrome.

Finally, in 2008, my symptoms got so bad, I knew I needed to seek treatment and get a formal diagnosis. And, I was hoping that I also would find some help. I contacted my general doctor who sent me to a cardiologist. They had me wear a halter monitor to watch my heart rate for 30 days. It had electrodes that attached on my chest and a monitoring device I attached to my waist on my pants. I had to press a button on the device anytime I felt my heart palpitating, and this would record an EKG. Then, I had to call the monitoring center once a day and transmit my EKG over the phone (a very strange thing!). A few times, the people from the center called to make sure I was okay, as they said my monitor recorded my heart beating at dangerously high levels! When the test was over, it was concluded that I had no arrhythmia's but I did have severe palpitations (so my heart raced really fast a lot of the time, but the beats weren't abnormal). After this, they sent me for a tilt table test. My test was positive for dysautonomia and they said I had POTS. During the test, my heart rate went up to 170! My blood pressure fell to 50/30. I did pass out.

What is POTS? What is it like to live with POTS? Does it go away? Is it curable? What are the symptoms?

POTS seems to be different for different people. For some, POTS is something one gets as a teen and outgrows it by their early twenties. For others, and I am finding this to be the case for those who have EDS and POTS together, it gets really bad around the mid-twenties and just continues to get worse with age. My symptoms are pretty severe now, at almost 28, and they make my life rather difficult on a daily basis. When I move, whether lying to sitting or sitting to standing, bending over to reaching above my head - and sometimes movements so slight as turning my head or moving my arms - my blood pressure drops, my heart rate goes way up and I become dizzy, things get black, and sometimes I pass out (which is inevitable if I don't immediately sit back down). I can't stand for long periods of time, like at a concert or in line at the grocery store, and more and more I am having a hard time standing at all. I am always tired, fatigued, have no energy, and this is caused by my heart doing overtime all of the time. I have likened it to 'running a marathon 24 hours a day, while not actually doing any physical activity.'

There is no cure for POTS. There are some forms of treatment, but nothing that takes away all of the symptoms. I tried the 'lots of water and salt' plan, which did nothing for me (though I continue to consume lots of water and salt just in case). I tried medicines. There are beta-blockers, steroids that make your body retain salts, medicines that keep your heart rate up, medicines that keep your blood pressure up. I went through the rounds. If 10/10 is feeling perfect, the closest I got on medicines was a 4/10. My endocrinologist exhausted all resources she and her team of doctors felt they could, and so I was stuck with a 4 out of 10. That was improvement, so I took it, but when I lost my insurance, I had to stop those medicines (couldn't afford at $1300!). Some people find relief on the meds, some don't. Some find just a little. That was me - just a little bit of help. Now, with no meds and no other choices, I currently am dealing with the full range of symptoms. I do a lot of resting, have a hard time being fully mobile, and am in a wheelchair if I need to go out and do things that require a lot of walking or standing, or on days I have no energy. Mostly, I just don't do a whole lot.

POTS, in itself, can be disabling. EDS can be disabling as well. Put them together and you have me - a young, healthy-looking woman on the outside, who is really ill, battling 2 syndromes that leave me in a lot of pain and thoroughly exhausted. It is very hard to convey this to friends and family. How do you explain your fatigue and pains, how do get across your 'invisible disease' without seeming lazy and like you are just complaining? Most doctors don't even know about the two rare disorders Ehlers-Danlos Syndrome and POTS. I was diagnosed with both, by medical doctors, and yet I still don't get the respect/sympathy I would if I told someone I had Parkinson's, breast cancer, or any other random number of well-known diseases. Not that I discount or discredit anyone's medical condition whatsoever; more so, I find it very hard, very frustrating that all diseases aren't given equal weight. Most people still don't understand. They don't believe me when I tell them I am sick. That is why I have chosen to dedicate time to increasing awareness of EDS, POTS, and bipolar disorder (another post). As the saying goes, 'invisible diseases suck!' - and, yes, they do. So, lets do something about it.

And, to keep a bit of humor here, as Elliot said on the TV show Scrubs, 'If you want sympathy, get a disease people can see!' (Just kidding!)

(Video: Trailer for Changes: Living with POTS documentary)

Symptoms of POTS outlined by Dysautonomia Information Network

  • Fatigue (which can be disabling)
  • Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)
  • Headache/migraine
  • Myofascial pain (characterized by regional muscle pain accompanied by trigger points)
  • Neuropathic pain
  • Dizziness
  • Tachycardia
  • Exercise intolerance
  • Clamminess
  • Anxiety
  • Flushing
  • Postprandial hypotension
  • Blood pooling in limbs (can make legs feel heavy and appear mottled and purple in color)
  • Intolerance to heat
  • Feeling cold all over
  • Low blood pressure upon standing
  • Cognitive impairment (may include difficulties with concentration, brain fog, memory and/or word recall)
  • Narrowing of upright pulse pressure
  • Cold hands
  • Hypovolemia (low blood volume)
  • Chills
  • High blood pressure
  • Hyperventilation
  • Numbness or tingling sensations
  • Reduced pulse pressure upon standing
  • Low back pain
  • Aching neck and shoulders
  • Noise sensitivity
  • Light Sensitivity
  • Disequalibrium
  • Arrhythmias (irregular heart beats)
  • Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)
  • Easily over-stimulated
  • Feeling full quickly
  • Feeling "wired"
  • Food allergies/sensitivities (some foods seem to make symptoms worse)
  • Hyperreflexia
  • Irregular menstrual cycles
  • Loss of appetite
  • Loss of sex drive
  • Muscle aches and/or joint pains
  • Swollen nodules/lymph nodes
  • Polydipsia (excessive thirst)
  • Weight loss or gain
  • Feeling detached from surroundings
  • Restless leg syndrome

(Video: A Demonstration of Dysautonomia POTS)

Subscribe to My Life with Ehlers-Danlos Syndrome by Email

Saturday, July 18, 2009

Social Security has Dance Party & I Still Have No Assistance

The Social Security Administration had a dance party last week, at the cost of tax payers. The cost? $700,000.

Yep, you read that right.

[Video: ABC15, SSA partying it up in Phoenix at OUR expense.]

Call it a workshop, conference, or whatever else you want. I call it a waste of money and extremely frustrating. We are in a deficit. The Social Security Administration is a government organization that is supposed to be spending money helping out Americans, including those with disabilities. Instead, they are taking $700,000 to boost employee morale, that money coming from tax payers' pockets (this is not a private company using private funds to host a conference - they are taking OUR money to pay for this) - instead of using that money for what it should be used for. Poverty? Medicare? SSI? Disability?

Where is my money? Where is my assistance? I have been fighting my disability case for a long time, all with no answers as of yet (other than 'you are not disabled'), and they are out spending a huge amount of money partying in Arizona. It infuriates me.

What can $700,000 do? Well, for starters, it could pay Social Security Disability benefits to someone at $20,000 a year for the next 35 years. Or, it could pay 50 people $1,200 a month for an entire year. With hundreds of thousands of people across the nation awaiting decisions on their disability claims due to piled up backlogs from lack of funds, it seems a bit ridiculous for the SSA to just toss this money around like poker chips in a casino.

I am all for employee parties and 'training' conferences, from private companies that have funds for them. When I worked for Southwest Airlines, trust me, when the money was rolling in for the company, we had plenty of them. The SSA is not Southwest Airlines. My livelihood, my medical care, and my future depend on them actually doing their job, treating my case justly, and listening to my doctors when they say I have disabilities that make it too difficult to work enough to care for myself. I need the SSA to put their money where it belongs. And, the general public deserves to have their taxes put to use to help our fellow countrymen, and not to for the SSA to play dance party at the cost of $700K.

Subscribe to My Life with Ehlers-Danlos Syndrome by Email

Tuesday, July 14, 2009

Need a Heating Pad or Ice Pack?

(Photo: ThermiPaq on my lower back)

About two and a half weeks ago, I woke up in bed to the most horrible pain ever. I thought to myself, "this is worse than the pain from my gall bladder surgery!" - seriously. My neck and back hurt so terribly I couldn't move at all. Over the next two days the pain got so intense that I had to be helped all around the house - if I actually needed to move - and 99% of my days were spent sitting in an upright position moving as little as possible. This was putting more pressure on my hips and lower back, and they were becoming sore, but it was the only way to stop the excruciating pain from jolting up my neck and shoulders. By day 4, my right arm was completely tingly. It ached. I was screaming, literally, in pain every time I moved. I was in tears for hours. Pinched nerve? I mean, I had experienced what I called 'pinched nerves' before, and I had experienced this shooting sensation, but never to this degree. It was all I could do to not just want to close my eyes and not wake up.

In comes my mother, my savior. She offered to help me get to the chiropractor, well - to pay for the visit - and I had to drive there myself (she lives 3,000 miles away from me). Yikes! (That was a chore, to say the least!) I know, chiropractors and EDS don't mix well. But, something had to be done. And, so I went. Two dislocated ribs. 3 vertebrae subluxed. My hip out so much that one leg was 3 inches shorter than the other. All from rolling over in my sleep or whatnot. Lovely!

The chiropractor was a little familiar with EDS (I gave him fair warning when making the appointment), and it could have been from him just reading up on it before I came in (go doctor!) - I was thrilled. He knew what the typical limitations were (or that my stretchy body had no limitations, so he needed to enforce only what normal mobility would allow). And, he adjusted me over the course of a week. After that first session, I could actually walk without bawling my eyes out. I mean, it still hurt like no other, but it was a tiny bit better - I'll take it!

After two weeks of healing, and several visits later, I seemed to be doing much better. Then, Sunday, I woke up and turned my head in bed. I heard a bunch of crackles and snaps and then instant pain. Oh no!! This time it wasn't near as bad, but as the day went on, I was back to hardly moving at all. By Monday morning, it was apparent I needed to get back in. The vertebrae had slipped back out. But, the hip was better. And the lower back, where I have scoliosis, was better too. Only slightly out of place. But, those vertebrae! Ack!

Apparently, I should expect this to keep happening. Stretchy tissue leads to things slipping. I know this. But, once they are more stretched out, it is easier for them to keep slipping out. So, I am now told to be very guarded in my movements. If it happens again, to lie on a bed and drape my head off the edge. This will provide, roughly, 12 pounds of weight (my head) acting as a traction device to try and relax the muscles and perhaps let the vertebrae slip back into place. That will be first on my agenda next time. So far, the ribs seem to be staying in place. Little bit of slipping, but not back out like they were. The right side ribs seem to be very temperamental - they tend to slip out frequently.

(Photo: ThermiPaq on my knee)

So, I am in recovery again. Just able to move around the house a bit today. I can't lift a whole lot or bend over, so sitting upright all day has made my lower back hurt. As I was sitting here with a heating pad on my lower back, I got to thinking. I really like my heating pad. Perhaps it could serve you well too. The best hot pads are the ones in the chiropractor's office or the physical therapists use them sometimes too. They are huge. They are moist heat. They work nicely to relax muscles. But, I don't have them at home. And, they need to be heated in a pot of boiling water. When I am hurting, I don't have the time or energy to do that.

A few years ago, I found a heating pad at Target that I really love. I have been happy with it since I got it. You can heat it in the microwave. You can also put it in the freezer. And, it stays HOT for about a half an hour. Seriously. I don't like electric heating pads, so this is a perfect alternative. It has some weight to it, which I actually like. It is like heavy heat sitting on my problem area, seems to penetrate better. It also is very malleable and will conform to whatever body part you need it for. I use it for my knees, back, shoulders, ankles, etc. I have one of their bead ones and one of the ceramic clay ones. I like the clay one the best. Anyway, I am going to rest, and you can check out the rest of the info on their site (I posted a little from their site below).

Note: You can buy them all over - Target, Walgreens, etc. Happy heat!! :)

Thermionics Heat Therapy Products

  • "TECHNOLOGY. Thermionics pain relief products are unlike any other therapy delivery system on the market today. What makes these products superior is our patented Theramics (Thermal Ceramic) compound, which was developed by a former NASA engineer. This revolutionary technology utilizes a synchronized blend of all-natural, ceramic clay and non-toxic oils to create the ideal thermal transfer source. Theramics is the only product that capitalizes on the efficiency of radiant energy to create deep penetrating, therapeutic pain relief. This unique compound is safe, easy to use, and highly efficient in the treatment of a wide variety of pain discomforts such as arthritis, sports injuries, muscle pain, joint stiffness, menstrual cramps and headaches."

(Photo: ThermiPaq on my knee)


Subscribe to My Life with Ehlers-Danlos Syndrome by Email

Sunday, July 5, 2009

New Diet (A Healthy Way of Living)

Green Smoothie (Kale, banana, apple, water)

Hope you are well! I wanted to update you on my new way of eating - more for overall health - with hopes that some of it helps specific conditions. I will be trying out this diet for a few months (and potentially for the rest of my life!), and I will report along the way with any changes I notice in my overall health.

I was vegetarian for many years, and in 2005, decided to go vegan for my health, for the animals, and for the planet. I don't want this site to be about veganism, but it is part of my lifestyle and will play a role in things I post. What is a vegan, exactly? Well, I embrace a lifestyle built solely on compassion and love. I don't use any animal products (like lotion made with lanolin which comes from sheep), eat any animal products (no pigs, chickens, cows, eggs, milk, butter, etc.), wear any animals (no fur or leather), support any forms of entertainment that use animals (like Sea World, the zoo, circuses, movies with apes, horse-racing, etc.), or support any forms of animal testing (for make-up, scientific research, food research, or anything else where vivisection is used. Animals feel pain and suffer just like humans do, and I will not take part in the suffering of an animal). I am not pushing anyone to go vegan, but I am an open book about kind choices, so email me if you have any questions or want more info! For those of you who aren't interested in the lifestyle, please just read on, as my focus is on all sorts of food allergens, not just animal products, and I think even the heaviest meat-eaters could stand some greens in their diet!

The great part about the vegan lifestyle, it cuts out a ton of potential food allergens - things that aggravate our GI systems, wreak havoc on our bodies, blood, colons, etc. When I cut out meat, I did notice a bit of a difference in the way I felt, but it was so long ago that I can't give specifics. When I cut out dairy, my life changed. With EDS, we have tons of digestive problems, gastro-intestinal problems, chronic constipation, IBS, etc. There was a drastic improvement with all of this. I felt like I could eat without feeling sick, more times than not. I was 'lactose intolerant' - and stopping the dairy helped with this, of course! But, being vegan doesn't mean that I was always a healthy eater. Chips, cookies, candy - those can all be animal-free and still horrible for our bodies. I have been focused on healthy eating for quite some time now, and when I decided to make these natural changes in my life recently, it seemed pertinent to reevaluate my dietary habits as well as my medicinal and physical habits. In doing so, I am making even more changes to my diet. (In addition, I have read many articles about meat and dairy aggravating symptoms of fybromyalgia, so I am glad those aren't in my diet and haven't been for some years now.)


As you know, I have done a lot of researching and reading lately, and it has come to my attention that nightshade vegetables are potentially toxic - causing inflammation and even possibly causing arthritis.
Solanaceae is also informally known as the nightshade family and includes peppers (bell peppers, paprika, chilies, etc. - black pepper is not in this family), potatoes (not sweet potatoes, but all others), tobacco, tomatoes, eggplants, Jimsonweed, mandrakes, deadly nightshade, and petunias. I have cut these out of my diet completely to see if this helps at all with some of the pain I have. There are a lot of great articles I came across, but I will just list a few below you can check out if interested (in addition to this topic being addressed in the Prescription for Nutritional Healing):

Can the Foods You Eat Make a Difference in Chronic Pain?
Article by Shereen Jegtvig,

"Another possible source of irritation comes from the nightshade family of plants. Whole fruits and vegetables are important to eat for their vitamins, minerals, and natural antioxidants, however some vegetables like potatoes, tomatoes, and eggplant may actually make pain from inflammation worse. These vegetables are part of the nightshade family of plants and contain a chemical alkaloid called solanine. Solanine can trigger pain in some people. While there isn't any formal research findings that back the claim about nightshade plants, some people believe they get relief from the symptoms of pain and inflammation. (Cont'd.)"

All About Nightshades: Explore the Hidden Hazards of Your Favorite Foods with Macrobiotic Nutritionist Lino Stanchich

"Used in shamanism, witchcraft, and even poisonous murder, nightshades have a history of both mystical danger and scientific caution. Some nightshade plants are ingredients in potent narcotic medicine and sleeping pills. It is reported that nightshades contain high levels of alkaloids which cause the bones to excrete calcium, other minerals, and trace elements from the body. Many enlightened doctors and nutritionists recommend that those suffering from arthritis symptoms eliminate nightshades. In this article, the focus will be on two of the most favorite "vegetables" in America. (Cont'd.)"

Popular Foods Source of Arthritis Pain and Inflammation
by Deborah Cooper

"According to a study conducted in 1993 by Childers, eating nightshade foods results in “a buildup of cholinesterase inhibiting glycoalkaloids and steroids…and may cause inflammation, muscle spasms, pain, and stiffness.’ The less cholinesterase the body produces as it ages, the less agile the body will be. Therefore, anything that additionally inhibits cholinersterase will add to joint deterioration and stiffness. Cholinesterase inhibitors such as nightshade foods affect mostly rheumatoid-type arthritis. Additionally, the study also reported a link between osteoarthritis and vitamin D3, which is produced by the nightshade foods. The researchers concluded that “osteoarthritis appears to be a result of long-term consumption of the Solanaceae, which naturally contain the active metabolite vitamin D3, and in excess causes crippling and early disability (as seen in livestock.)” Other research suggests that these nightshade foods all contain a substance called solanine, a bitter poisonous alkaloid that inhibits nerve impulses."

In addition to cutting out nightshades to help with the symptoms of EDS and fybromyalgia, I am cutting gluten out of my diet to help with EDS and bipolar disorder. Celiac's Disease is an allergy to gluten that results in malabsorption of nutrients. People can just have gluten intolerances or actually have Celiac's - and sometimes people who have a negative test result for Celiac's still may actually be positive for Celiac's Disease. I have been tested, and my results are negative for Celiac's; however, I have many of the symptoms of Celiac's or gluten intolerance, and it seems like many of the symptoms of EDS are right in line with them as well:

From - Signs and Symptoms of Malabsorption, Malnutrition, Vitamin and/or Mineral Deficiencies Associated with Celiac Disease:

Abdominal cramps, gas and bloating
Borborygmi (stomach rumbling)
Coetaneous bleeding
Easy bruising
Epitasis (nose bleeding)
Failure to thrive
Fatigue or general weakness
Fluid retention
Foul-smelling or grayish stools that are often fatty or oily
Gastrointestinal symptoms
Gastrointestinal hemorrhage
Hematuria (red urine)
Hypocalcaemia/ hypomagnesaemia
Iron deficiency anemia
Lymphocytic gastritis
Muscle weakness
Muscle wasting
No obvious physical symptoms (just fatigue, overall not feeling well)
Pallor (unhealthy pale appearance)
Panic Attacks
Peripheral neuropathy (nerve damage)
Stunted growth in children
Vitamin B12 deficiency
Vitamin D deficiency
Vitamin K deficiency
Voracious appetite
Weight loss

Experiencing a lot of these symptoms leads me to believe it would at least be worthwhile to cut gluten out of my diet and see if it makes a difference. Perhaps my vitamin D deficiency and osteopenia levels of bone-loss might not be caused by EDS alone, or by a gluten intolerance, but maybe both? Perhaps cutting out gluten will alleviate some of the gastric problems I still have, or at least alleviate some of the fatigue? I am willing to give it a shot.

In addition, gluten has been linked to mood imbalances with bipolar disorder. I had no idea!

From The Mood Cure by Julia Ross:

"Dozens of studies confirm that depression is a common symptom of gluten intolerance, one that usually disappears when wheat and the similar grains are withdrawn. People with gluten intolerance have low levels of the antidepressant, antianxiety brain chemical serotonin, and gluten has been implicated in mental illness since at least 1979, which is when I first noticed pychiatric journals reporting tremendous improvement in the symptoms of patients with depression and manic-depression in mental hospitals who had experimentally been taken off gluten-containing foods. More recently, anxiety, Tourette's, ADD, epilepsy and other neurological problems have been associated with these grains."

Natural Treatment for Bipolar Disorder (Manic Depression)
by Natasha Turner, ND

"There is much controversy over certain foods and their effects on our mood. Food allergens such as gluten, wheat, dairy products, food additives, alcohol, caffeine and corn may negatively impact our mental state. Gluten and wheat seem to have the biggest connection to the brain and mood."

What You Should Know About Celiac Disease
by G.J. Gregory,

"There does seem to be a quantifiable link between celiac disease and certain mental conditions, primarily autism and schizophrenia, but bipolar disorder is also mentioned. Depending on the study you come away with a “chicken or egg” feeling. Is celiac disease caused by the mental condition, or is the mental condition caused by, or aggravated by, celiac disease? Or is it not a mental condition at all, but other problems caused by the intolerance of the body to the gluten? It is certainly true that celiac disease causes vitamin and mineral deficiencies, and even neurologic problems. Because of the damage to the lining of the small intestine, the body may not able to absorb all it’s nutritional needs. This includes the absorption of certain medications, which for us can be a huge concern."

Per the Celiac Disease Foundation, "gluten is a common name for the offending proteins in specific cereal grains that are harmful to persons with [Celiac Disease]. These proteins are found in all forms of wheat (including durum, semolina, spelt, kamut, einkorn, and faro), and related grains, rye, barley, and tritcale and must be eliminated."

Oats are also typically on the no-no list for people with CD, but there are gluten-free oats on the market (available at health food stores and online, or perhaps Whole Foods or stores like it). The controversy seems to stem from the whether or not the oats are problematic, or if it's contamination from other grains.

Gluten is in everything! From the obvious (breads, cereals, baked goods) to the not so obvious (soy sauce, soups, ketchup), it will be a label reading game at the store. Nightshades are in plenty as well! No more Thai and Indian food - or at least the usual. No red sauce. No potato anything. A lot of gluten-free products use potato starch (often listed as 'modified food starch') as a thickening/binding agent, so I won't be able to eat those.

What else?

According to
Prescription for Nutritional Healing's guide to treating fibromyalgia, they recommend the following: eating a well-balanced diet of 50% raw foods and fresh 'live' juices. The diet should consist mainly of vegetables, fruits, whole grains (primarily millet and brown rice), raw nuts and seeds, soy products - these quality foods supply nutrients that renew energy and build immunity. Also, eating 4-5 small meals a day will keep a steady supply of protein and carbs available for proper muscle function. If the body does not have enough fuel for energy, it will rob the muscles of essential nutrients, causing muscle pain and weakness. Drinking plently of liquids to flush out toxins, specifically drinking water and herbal teas, along with vegetable juices. Don't eat meat, dairy, or any other foods high in saturated fat, they raise cholesterol and interfere with circulation. They also promote inflammatory response and increase pain. Avoid fried foods, processed foods, shellfish, dairy foods, and white flour products (bread, pasta, etc. - no problem there - they have gluten!). NO caffeine, alcohol, sugar. Eating sugar in any form - including fructose and honey - promotes fatigue, increases pain, and disturbs sleep. In addition, recommendations for bipolar disorder also list no caffeine, alcohol, sugar, dairy, carbonated bevarages, and no foods with colorings, flavorings, preservatives, and other additives. Eating omega-3 fatty acids (flax!!) helps stabalize mood swings.

So, what does all these mean?

  • NO meat.
  • NO dairy.
  • NO nightshades. (No potatoes, tomatoes, eggplants, peppers)
  • NO gluten. (Wheat, rye, barley, spelt, kamut, oats)
  • NO added sugars (I will only do a TINY amount of agave nectar here and there, but very minimally. And, I will still eat fruit. Nothing else.)
  • NO caffeine (Most days. I will probably occassionally have some yerba mate tea.)
  • NO alcohol (Haven't had a drop since March 14, 2008.)
  • NO artificial anything.
  • NO preservatives (I will do my best! So far, so good!)
  • NOthing else added.
  • NO soy*. (Well, this one is currently limited soy, with a possibility of going soy-free.)


*In addition to all of this, I have found the elimination diet to prove quite well at testing for food allergies. I have always thought I have a soy allergy, and after fasting, then going raw, I didn't eat soy. I tested it out by adding it into my diet on three different occassions. One time I had tofu I grilled up. Another time I had tofu a friend made. A third time I had TVP (textured vegetable protein). All three times I got si
ck to my stomach, had gas and bloating and felt naseuous for hours afterward, and still felt gross the next day. To me, that says my body doesn't like soy! I haven't had any since, and have been doing much better.

**Of course, you are wondering where I am getting my protein from. Americans, specifically, don't seem to understand that protein can come from grains, and you can get enough to be healthy. I would recommend, if you can eat soy, to add soybeans to your diet as well, but perhaps with as little processing as possible (Edamame or even tofu - rather than soymilk, or fake meats with all of their prese
rvatives and additives -and they normally contain gluten and nightshades. See below! :)

(Greens from my garden)

So, what AM I eating?!

  • Whole foods in their natural state!
  • Mostly, as much as possible, ORGANIC!
  • Tons of greens.
  • Salads, kale, spinach.
  • Lots of veggies. Fresh fruit.
  • For cooked??? (See the proteins below - flax, grains, beans, rices! Yes, they all provide protein)
  • Brown rice pasta, rices (not Uncle Ben's White Rice!), beans (I cook myself in a pressure cooker), millet or flax breads and pizza crusts, or tortillas (though I am limiting the things that are processed, so mostly just rices and grains). Gluten-free grains like millet & quinoa (a SUPER grain - a complete protein!).
  • Almond milk.
  • Nut butters.
  • Raw nuts and seeds.
  • Raisins, goji berries, dates, prunes.
  • More green leafy veggies.
  • More veggies in general. (Mostly raw)
  • Apple cider vinegar.
  • Bragg's Amino Acids.
  • All the supplements on my list.
  • Gluten-free oats.

Sound boring?!

Actually, I am finding that I crave these foods now, and my sweet tooth is being soothed by some cherries or a peach. I am feeling a bit more energetic (2 weeks in!). And, my digestive tract is LOVING me! Not really any IBS problems (minus the nights I ate soy). And, I am really enjoying these foods. I actually want to eat them - though, it wasn't that way at first! But, they say it gets easier, and I have to say - 'they' are right, as of right now! :) So, I am hoping that these new changes make me healthier in general, and will help alleviate some of the symptoms of Ehlers-Danlos Syndrome, Fibromyalgia, Bipolar Disorder, etc. I guess only time will tell!!

Thanks for reading - if you have any questions, please just comment below or email me!


(Pea Burgers, these were so good!)

Subscribe to My Life with Ehlers-Danlos Syndrome by Email