Wednesday, June 24, 2009

WHY: Vitamins, Minerals & Herbs

Here is a list of the Vitamins, Minerals and Herbs I am taking and the reasons I have determined they are important. Most of this info I got from Prescription for Nutritional Healing, my own Internet research, etc. :

*See post 'Schedule for Supplements' for the dosage I am taking!! (And, this is just a blog, I am not a doctor.)

I would list what I am taking for EDS and bipolar disorder separate, but as you will see, so many of the supplements' effects cross over into each. They are all just listed in random order below:

  • NADH (nicotinamide adenine dinucleotide) - active coenzyme of vitamin B3, increases energy, used to treat Chronic Fatigue Syndrome, Alzheimer's, Depression and Parkinson's. Also used to help athletes, reduce jet-lag, 'upper'. This also enhances production of dopamine and serotonin.

  • Taurine - antioxidant that helps the immune and neurological systems. Deficiency can result in hyperactivity, anxiety and poor brain function.

  • Coral Calcium/Magnesium - it was recommended to me by my endocrinologist that I get around 1,500 mg of elemental calcium per day. Just because a tablet contains 500mg of calcium, that doesn't mean they are mg of elemental calcium (most were like 500mg calcium, only 200mg of that being elemental). I found coral calcium to have the greatest amount of elemental calcium for what I need, and I don't have to take 20 pills a day. Just a couple shots of yummy juice. As we all know, calcium is needed for bone health. What I didn't know, is that calcium is needed for proper muscle function (the heart included), and that it helps relieve muscle spasms and pain. Coral calcium also contains vitamin D and magnesium (along with other minerals), naturally, and this will help aid in absorption. Also, most other calciums either cause constipation and/or have lots of fillers and fake ingredients (Calcium chews, Tums, etc.). Some coral calcium from Asia has been reported to have levels of lead. Concerned, I contacted the company I wanted to buy through (Dynamic Health), as I like some of their other products. They assured me their products are all lab tested an contain no lead. And, the coral calcium is gluten free (some liquid forms contained gluten).

  • Vitamin D2 (D3 is usually derived from animals) - My endocrinologist tested my vitamin D level initially and it was SUPER low. If you have EDS, get a bone-density scan and a vitamin D blood check. I have low-bone density at 27 (levels equivalent to osteopenia, bordering on osteoporosis). Calcium can't be absorbed without enough vitamin D. People with fibromyalgia, EDS, etc. tend to have low D levels. Low D levels, as reported on EDNF's website, are linked with pain. Vitamin D aids in bone growth and reduction of inflammation.

  • L-Tyrosine (with B-6) - free form amino acid, helps relieve depression and aides in relaxing the muscles. It gives energy and raises libido. May be helpful in treating alcoholism. Suppresses appetite. B6 helps the body convert protein to energy and helps brain function. Also, stabilizes mood swings.

  • Lithium Orotate - an organic form of lithium, I will be taking this for my bipolar disorder. There is a lot of talk about whether or not this is useful, as there are no human studies on treating bipolar disorder with it. Lithium carbonate is the pharmaceutical standard prescription, and it works, but has harmful side effects. Blood tests must be done to maintain levels below toxicity (can lead to death). The same is not true of lithium orotate, as it is more bio-active -- You need much less lithium orotate than lithium carbonate -- it is 20x more active. There are tons of sites listing pros and cons. I am going to test it out and give you my opinion. It also is linked in helping battle alcoholism (which is something I struggle with) - there are actual human studies proving this, and helps with headaches. Three articles attached for reference: Article 1, Article 2, Article 3. Click to read. Lithium is a salt that alters the manic-depressive cycles, resulting in greater mood stability.

  • Reishi Mushroom - a mushroom that has been used in China for thousands of years. It helps the body deal with stress and increases energy levels. It helps immune system function and is also used to detox the liver. The only company I will buy from is listed on my dosage post: MushroomScience. They use the traditional Chinese method of hot water extraction and back up all of their products with specific scientific documentation.

  • Cordyceps Mushroom - again, MushroomScience is my recommendation. Helps with stamina, energy and endurance. Taken by lots of athletes.

  • Colloidal Silver - a natural antibiotic. This helps immensely with urinary tract infections/bladder infections. I recommended this to a customer of my store and she came back a week later and said her infection was gone. :) I have had many issues with these my whole life, and this seems to help, along with the cranberry I mention below.

  • Maxi B-50 Complex - B vitamins are essential for energy and brain function. As a vegan, I need to make sure I get lots of B-vitamins, including lots of B-12, but even the average Joe needs lots of them. I have read a lot about people with EDS being deficient in B-vitamins, and not absorbing them easily, so extra should be taken anyway.

  • Flax Seed - ground - for fiber and EFA (omega-3) - you hear it all the time, I am sure. Essential Fatty Acids! Eat fish. Get your omegas! Well, flax, in my opinion is the BEST way to get your EFAs. Fish are high in omegas because they eat plants that are high in them. But a.) I don't eat fishies, b.) with all the side effects and health risks of eating fish today, it isn't a logical choice for EFAs, and c.) why not cut out the 'middle man' or 'middle fish'? and just eat the plants. Flax also really helps with digestion, constipation, diarrhea, IBS. EFAs are important for protecting your cells against damage, and also help in reducing fatigue and relieving pain. I mix ground flax seed in oatmeal (gluten-free oats), smoothies, etc. Also, I use flax oil on my salads. You could use flax (ground) in some soy yogurt for a nutty taste and texture, or just squirt a little oil into your yogurt. EFAs also help with circulation and blood pressure stability.

  • CoEnzyme Q-10 (with vitamin E and soy lecithin) - I need all three of these, and this tablet provided them together - hooray! CoQ10 is super important. Improves oxygenation of tissues, helps immune system, protects the heart. Lecithin (from soy) promotes energy, aids in brain function, and improves circulation. Vitamin E fights free-radicals, which helps immune system function.

  • Acidophilus and Bifidus - got Fibromyalgia? or symptoms of it? Then you probably get yeast infections. Candida destroy your good bacteria. Taking a probiotic (non-dairy only) will help replace those friendly buggers that we need to keep things functioning properly down there.

  • DMG - dymethylglycine - helps muscles use oxygen and helps fight free radicals.

  • Vitamin C - this is a BIGGIE. The one and only piece of 'natural health' advice my geneticist gave me was take EXTRA EXTRA vitamin C. Vitamin C has antiviral qualities and helps increase energy. In addition, if you get urinary tract infections, they extra C that sits in your bladder will prohibit the growth of bad bacteria, which can in effect stop UTIs in their tracks! :) And, by lots, I have been told to take 10,000mg a day. That is a lot. I will update you when I find a 'perfect' way to take this. Right now, I am combining pills, emergen-C, etc. It is hard to get that much C! I looking into some 2,000mg tablets.

  • Cranberry- UTIs be gone. I use an ultra concentrated form that has 1,000 mg of cranberry extract. (On the dosage page)

  • Multi-vitamin (vegan) that contains manganese, folic acid, and zinc - Multi - yep. Take in all the things that I need. Plus, I don't want to harm animals just to get my vitamins, so I buy a vegan version. (All of the supplements I have listed, with the brands listed, should be vegan. I did check them all out.) Also, mineral imbalances cause depression.

  • Emergen-C - the packets of fizzy goodness. They have too much sugar, but right now I am using them for the Vitamin C and the extra B vitamins.

  • MSM - Methylsulfonylmethane - relieves pain, provides support for tendons, ligaments, and muscles. MSMGuide.com

  • Boswellia - Ayurvedic (used in India, meaning 'life' 'science') - boswellia is the resin of the Boswellia tree - helps with morning stiffness and joint pain.

  • DLPA - DL-phenylalanine - Amino acid, effective for controlling pain. Increases mental alertness.


  • Blue Green Algae- best source of DHA (essential for brain function).

  • B-12 spray, 1 spray sublingual- energy! :) It also helps make myelin, the substance of which the sheaths covering the nerves are made.

  • Chlorella - good source of protein, maintain energy between meals, helps ease muscle pain

  • Vitamin E oil - antioxidant

  • Vanadyl 10mg with niacin and chromium picolinate - Another all in one! Vanadyl protects the muscles and reduces body fatigue. Chromium helps balance blood sugar. Niacin helps aid in absorption.

  • 5-HTP - 5-hydroxytryptophan - enhances synthesis of serotonin in the brain, helps relieve pain

  • Melatonin OR- Valerian root - ah....sleep.....

Schedule for supplements

*See post 'WHY: Vitamins, Minerals & Herbs' for reasons why I am taking each of these!!

**Click on each link to view product on company's website. These are just the ones I chose, sticking to what is not derived from an animal, comes from a clean and reputable company with good business ethics, etc. You can find most of these at your local health food store or online.

***It may seem like a lot, but the side affects of these are not long-term liver damage, death, etc! The side effects are things like more energy, better sleep, longevity, etc. Yay!



Morning (wake up, empty stomach):





Morning (with breakfast):


  • Maxi B-50 Complex, 1 Capsule - MaxiHealth
  • Flax Seed - ground - 2 Tablespoons - for fiber and EFA (omega-3) - mix with grains, fruit, smoothies, etc. (any brand, organic)
  • CoEnzyme Q-10, 200mg, with 100iu vitamin E and 50 mg soy lecithin - Now Foods
  • Acidophilus and Bifidus, 100mg each - Nature's Answer
  • DMG, 125mg - FoodScience of Vermont
  • Vitamin C - finding new brand (must get 5K-10Kmg daily!)
  • Cranberry, 1000mg w/herbs and vitamin C 100mg - Nature's Plus


Midday (with lunch):


  • Maxi B-50 Complex, 1 Capsule - MaxiHealth
  • Multi-vitamin (vegan) that contains manganese, folic acid, and zinc, 1 tablet - Deva
  • Vitamin C, 2 packets = 2000mg - Emergen-C (mix with MSM)
  • MSM - I buy a kilo (bulk), 1 heaping Tablespoon mixed in Emergen-C (tastes terrible) - Jarrow
  • Boswellia, 500mg, 85% bowelliac acids - Avesta Well Being
  • DLPA, 500mg - Solgar
  • Chelated Molybdenum, 150mcg - Solgar (must take if taking MSM)
  • Blue Green Algae (best source of DHA, vegan), 2 tablets = 1 gram - Klamath



Afternoon (empty stomach):





Dinner (with food):


  • Maxi B-50 Complex, 1 Capsule - MaxiHealth
  • Flax Seed Oil - any brand, cold-pressed, organic, high lignan if possible (don't heat; mix with salads, pour over your beans or rice once cooled, etc. Salad dressing is easiest.)
  • Vitamin E oil, 6 drops, sublingual - Now Foods
  • Lithium Orotate, 120mg - Dr. Hans Nieper
  • Acidophilus and Bifidus, 100mg each - Nature's Answer
  • Vanadyl 10mg, with niacin 20mg and chromium picolinate 200 mcg - Olympian Labs
  • Vitamin C - finding new brand (must get 5K-10Kmg daily!)
  • Cranberry, 1000mg w/herbs and vitamin C 100mg - Nature's Plus


Bedtime (empty stomach):


Tuesday, June 16, 2009

Fasting Log

Day 1:

Wow. Can I tell you how hungry I was all day?! You know that feeling you get when you are hungry - irritable, grouchy, every little thing aggravates you - perhaps it is just me - but - WHOA! It was me and it was all day. However; every time I was hungry, I just grabbed another glass of juice-water. I found the lemon-water (juice of one lemon squeezed into a cup of lukewarm water, also the best for cleansing) actually helped subside the hunger a bit. To keep my energy up during the day, I did drink lots and lots (probably a good 10 16oz. glasses) of juice-water, some regular water, and 2 cups of herbal tea in the evening as a treat. Those also had ginger in them to help with the cleansing/detox. I took one short nap during the day, and tried to do things to keep my mind off food. I can't believe how addicted to food I am!

Day 2:

Woke up and it wasn't quite so bad today! I was hungry, but even by 1:30pm I didn't feel so horrible - not the headache I had yesterday. My body doesn't really feel any different. I am having a hard time concentrating/focusing. I wonder if this is just from the fast, or perhaps from the residual withdrawal symptoms as my body pushes out more of the medicines I was on....???

Day 3:

Today was surprisingly the hardest - it started out easy - but by the end of the day I had a headache and was super grumpy. I was starving - and wanted to eat - but felt so sick to my stomach that I don't think I could have eaten if I tried. Good thing I didn't - day 3 down! :)


2 days of Raw Fruits & Veggies:

The first day: horrible. My system was completely out of whack - it felt like my stomach didn't know what to do with the food I was consuming. The bipolar meds must be totally out of my system now. It was a day of crying and being completely overwhelmed - with absolutely nothing. I couldn't wait to get into bed at the end of the night and make everything go away.

Second day: cake! Back to eating just raw fruits and veggies, and I did add some seeds in as well. Starting to feel a bit better.


And, that was it - fasting seemed scary and hard - and it WAS - but I did it and have hopefully detoxified my body as a result. This won't be the last fast I do - over time as the impurities build up, I want to do occasional detoxing.


Tuesday, 6/16/08 - Back to eating regularly, but on my 'new diet' - I will be posting about this tomorrow. Feeling better after the fast. My stomach is smaller, I don't eat as much. Funny - the only thing I craved as soon as I could eat food again was KALE!



Subscribe to My Life with Ehlers-Danlos Syndrome by Email

Tuesday, June 9, 2009

Subscribe via email

You can now subscribe via email to My Life with Ehlers-Danlos Syndrome! Much easier, in my opinion. Safe & secure as well. Please just visit the blog and fill out the form at the top! Have a great day!
xo
dani

Monday, June 8, 2009

Fast: Prep Day 1


Just a quick update:

Today is day one of the fast prep. I am supposed to have two full days to prep, but I am actually bumping it up and starting the full fast tomorrow (Tuesday), as I want to be able to eat at least some raw fruits and veggies by this weekend - have a vegetarian meetup and a bridal shower to attend! Kale and a banana will be looking pretty good by then!

Today was pretty easy. I just ate random fruits and veggies. That was it. No nuts. No grains. I was a bit hungry, as my body isn't used to getting everything it needs to be satiated from just the greens - but, as the day has gone on I am doing alright! I do miss my raw cashews, but I will live! :) For today, I had had a pile of the following: blueberries and strawberries (not pictured), kale (with lemon juice on it), spinach, green pea shoots, avocado, kiwi, carrots, an apple and a banana. Yes - that sure does seem like a lot - but, it is a lot of good food without silly filler. Also, for my fiber boost (which is recommended during the prep stage of the fast), I just took two tablespoons of ground flax and mixed it with a tall glass of water. CHUG! It was gross, but helped my body. When not fasting, I like to take ground flax and mix it in oatmeal, applesauce, etc. Great for fiber and great for omega-3 fatty acids.

Tomorrow starts no food. Sounds easy. But, I am sure it might be a bit daunting! For those of you just joining, please check out the post on fasting to get an idea of what I am doing.

I am finishing up my dinner - raw kale with lemon - yummy! (Really!)
Have a great night, everyone!
xo

Also - just a side note on the natural brush massage:
It is essential to slough off dead skin and open pores - to release those toxins! Click here for instructions. This should be done daily during a fast, according to the book Prescription for Nutritional Healing.

Saturday, June 6, 2009

Fast, Fast, Faster!

Now that I have let the medicines I have been taking for several years start slipping out of my body, I feel I need to do some to do some moving and shaking to help cleanse my system and put my body back in balance. I have never done a fast, but after reading all about them, I am very excited at the opportunity to restore my body's happy 'high' cycle. From the foods we eat to the pollutants we are exposed to, our bodies are laden with toxins - and, I am going to test out the timeless idea that by fasting, we can put our bodies into a cycle which pushes out toxins and helps us recover from certain ailments. I am following the three day juice-tea-water fast outlined in the book I recommended in my last post: Prescription for Nutritional Healing by Phyllis A. Balch, CNC. I will briefly outline the idea of the fast, but I do recommend actually reading the section on fasting in the book. It provides a more detailed outline along with important nutritional information.


From the book, and my other research, this is apparently what happens when you fast:


  • Reduction in total body toxicity
  • Energy used for digestion redirected to immune function, cell growth, eliminatory processes
  • Immune system's workload is reduced
  • Digestive tract spared inflammation from food allergies
  • Tissue oxygenation increased/white blood cells moved more efficiently
  • Fat-stored chemicals like pesticides and drugs are released
  • Physical awareness and sensitivity to diet and surroundings are increased
  • Help you heal faster
  • Cleanse liver, kidneys, colon
  • Purify blood
  • Help lose excess weight and water
  • Flush toxins
  • Clear eyes and tongue, cleanse breath

The book goes on about five and ten-day fasts, but I am doing the three-day fast - recommended to help the body rid itself of toxins and cleanse the blood.



Again - this is just a quick outline (and NEVER fast on just water alone):



Two-day prep:
(Monday and Tuesday)


  • ONLY raw fruits and veggies for two days to help reduce shock to body (I will be eating bananas, kiwi, avocado, kale, lettuce, green pea shoots, zucchini, apples, carrots....)
  • Fiber supplement (I am taking a heaping tablespoon of ground flax and mixing it with a glass of water - chug, chug!)


Three-day fast:
(Wednesday, Thursday, Friday)


  • Juice-tea-water diet
  • Drink at least TEN 8 ounce glasses of water, plus juices
  • Juice-water mix is 3 parts juice, 1 part water
  • NO orange or tomato juice
  • No juices with sweeteners or additives
  • Best juice is squeezing juice of one lemon and adding to one cup warm water
  • 'Green' drinks (fresh squeezed green leafy veggies) are good
  • Fresh juice from apples, beets, cabbage, carrots, celery and grape are good
  • Do not combine any fruits other than apples with veggie juices
  • I am doing fresh organic apple juice and water & the lemon juice/water combo, maybe adding fresh squeezed green leaf juices
  • 2 cups of herbal tea are allowed as well, per day (I am doing chamomile, red clover, lemon balm, and peppermint)
  • NOTHING else :)
  • During these days, I am also adding a recommended item: three times a day I will take 1 tsp. of spirulina and mix it in one of the juices (This will add protein, vitamins, minerals and chlorophyll for cleansing.)
  • I am also taking a supplement called Red Clover Cleanser from Planetary Formulas to aid in the cleansing process: http://www.planetaryherbals.com/products/GP1542/
  • Ginger baths release toxins by making you sweat them out - I will be taking a bath once a day and adding a 1/4 cup ginger powder to the water
  • NO gum chewing - it starts the digestive process
  • Get enough rest during the fast, at least 8 hours of sleep a night, and naps are good
  • Light exercise is good, just keep your normal daily routine the same
  • Use dry-brush massages to slough off dead skin and open pores - help release toxins

Two-day after fast raw-diet:
(Saturday and Sunday)

  • ONLY raw fruits and veggies for two days to help ease body back into normal diet (I will be eating bananas, kiwi, avocado, kale, lettuce, green pea shoots, zucchini, apples, carrots....)
  • Fiber supplement (I am taking a heaping tablespoon of ground flax and mixing it with a glass of water - chug, chug!)
  • After this, I am following my new health plan! I will be posting all about this when it gets closer. I will be starting my new supplements then, the diet plan, the exercise goals, etc.

SO - what am I doing with my one day left of freedom?!? LOL. Well, tomorrow is Sunday and I am attending a birthday party. I will break the rules for one last day and enjoy some vegan junk food, cupcakes, and lots of other goodies! :) After that, down to business!

Have a great night and a wonderful weekend!

Discovery Channel Video Clip

You may have seen this clip before, but I wanted to post it just in case you haven't. It is a great clip to send to friends or family as well, just a little bit of insight into the life of someone living with EDS. :)

Friday, June 5, 2009

Two Books I Recommend





If you spend any money on yourself this month, let it be on something that will help your body, mind and spirit. What better a way to do that than by helping get your health at its best? :)


If you have Ehlers-Danlos Syndrome, Type 3, or Hypermobility Syndrome, I highly recommend grabbing a copy of Dr. Tinkle's book Issues and Management of Joint Hypermobility. The book has helped me fully understand my EDS and get a grasp on just how it affects my body. It is the most comprehensive guide to hypermobility that I have come across. I will refer to it from time to time on my blog. I tend to pull it out and read up on things from time to time just to keep refreshed. It is available through Left Paw Press (http://stores.homestead.com/hstrial-LDarr/-strse-Medical-Books/Categories.bok) or other online retailers like Amazon.






My number one book of choice these days is Prescription for Nutritional Healing, 4th Edition, by Phyllis A. Balch, CNC. This book has been the foundation for my research into nutritional care, the building block for my new health plan and the inspiration for me to take charge of my body and bring myself back to the basics. I have been using the book as a starting point for my research as of late. For instance, the book will list 'fybromyalgia' and all of its symptoms, and everything that is essential for the body to function properly with it. It might mention a certain amino acid that is essential, foods to avoid, or herbs that help with pain. I take that info as a starting point and then start browsing the internet, library, health food stores, etc. I am finding the key is doing enough research. There are a lot of opinions on natural health care, and I like to read the pros and cons of each thing I am thinking about adding to my 'health plan.'


The book lists all sorts of ailments and recommendations for treating them - from the common cold to dealing with AIDS, cancers, heart disease - even POTS is mentioned! Ehlers-Danlos Syndrome is not listed; however, I have researched individual symptoms and found ideas for each, used things from the fybromyalgia section, the heart disease section, etc. It gives good nutrition advice, talks about allergies to foods, why eating organic is important, and has many great resources listed in the back - like websites to visit, books to read, etc. I bought mine through Organic Food Depot (where I work), but if you aren't a resident of Hampton Roads, you can grab it online. I have seen it on Amazon at a good price - just make sure to get the most current edition (I believe it is the 4th)!



There is a great review of the book on this website: http://www.herbalremedies.com/presfornuthe.html


It states:

"1. This book, the Prescription for Nutritional Healing, is comprehensive and lists many different drug-free remedies for various disorders and health conditions including vitamins, minerals, herbs, food supplements, exercise and meditation. It truly is a practical A-Z reference to drug-free remedies using vitamins, minerals, herbs, and food supplements


2. The author, Phyllis Balch, C.N.C. are realistic about the role of herbs in healing. Unlike other materials and books it does not advocate the exclusive usage of herbs for healing or view herbs as a "cure-all." It is also quite honest and very straightforward about the dangers of some herb usage.


3. The Prescription for Nutritional Healing lists diseases, illnesses and disorders in alphabetical order (along with recommended treatment) for quick reference. There are other chapters which specifically explore vitamins, minerals, herbs, the role of food supplements, nutrition and good water.


The Prescription for Nutritional Healing is a must have for any household!"


My next post will list the fast I am doing - it is straight from this book. I have looked into many ways of fasting - and I like their's best! :) We'll all see how it goes soon!


xo dani

Here we go loopty loo!


I now remember why I was on bipolar medicines - because without them, I am one irritable, grouchy, emotional mess. Today is Friday, almost a week off of all medicines. I start my fast on Monday. I am sure I am dealing with withdrawal a bit still, and also the effects of not having medicine managing the mood swings. I do hope that when this is over with, I am once again stable, and much more healthy. That will make this all worth it.

(In addition, perhaps it is because of the stress I am dealing with, my pain levels are much higher today than they have been. I want to bite off everyone's head - and my own - to stop the headache, the back pains, the neck stiffness and soreness, and the general uncomfortable feelings I am experiencing.)


The photo I have attached is of the Truckee River in Reno, NV. I used to sit here to relax and think. Peaceful to me, perhaps it will give you the same calming feeling. :)

xo

Tuesday, June 2, 2009

My Symptoms

    My (yes, all me!) symptoms from EDS, POTS, bipolar disorder and PTSD:
    • Chronic pain (as with most people who have EDS-HM) in the following: neck, spine, back, shoulders, elbows, wrist, hands, fingers, hips, pelvis, legs, knees, ankles, feet, etc.
    • Bursitis (currently in both hips) and tendonitis (elbows)
    • Dislocation of joints (my worst are my knees and shoulders)
    • Subluxation of joints (slipping, almost dislocating, but not completely)
    • Semi-thin skin that tears easily
    • Extremely long healing times
    • Easy bruising
    • Slight scoliosis in lower back and a 'forward-neck' (neck curves opposite of how it should)
    • Sensitivity to latex (hives or rash, not breathing issues)
    • Allergy to adhesives
    • Tape will rip my skin, so NO tape for blood draws, surgeries, etc.
    • Insomnia
    • Restless-Leg Syndrome (diagnosed thru sleep study)
    • Decreased sexual drive (though I went through a period craving sex as a way to connect and receive "love," which I have since come to learn was due to sexual abuse)
    • Irritability
    • Memory Loss
    • Anxiety
    • Chronic fatigue
    • Bruxism (grinding of teeth, especially at night), TMJ Disorder
    • Joint dislocation during sleep
    • Nerve compression in hands (similar to carpal tunnel pain)
    • Knee: recurrent patellar dislocation (knee-cap dislocating) and patellofemoral joint syndrome (PFJ) (dull ache behind knee cap, pain in surrounding soft tissue)
    • Weak ankles, dislocate sometimes, pop/click always, pain after standing/walking, etc.
    • 'Knock-kneed' - foot and ankle aligned wrong, alignment of muscles and bones in legs try to compensate, creating imbalance and more pain, thigh bones rotate in creating more problems (ortho said if this gets any worse it will require surgery to realign the bones in my legs)
    • Clumsy
    • Slight aortic dilatation (needs to be monitored by echocardiogram yearly for possibility of aortic aneurism - so far, just ever so slight and of no worry to cardiologists)
    • Tachycardia (crazy heart palpitations)
    • Orthostatic hypotension (blood pressure lowers when changing positions, moving)
    • Dizziness
    • Passing out (black out - sometimes I am on the verge, sometimes I actually pass out)
    • Severe headaches
    • Migraines (with nausea, vomiting, blurred vision, spotty vision, pain)
    • Eyes - 27 with a cataract in right eye! (which will eventually need to be surgically removed), astigmatism in left eye, need glasses for reading, computers, night-driving, dimly lit rooms, movie theaters, etc.
    • Gum disease
    • Mild asthma, especially with allergies
    • Chronic IBS and other gastrointenstinal problems
    • Chronic UTIs, leading to some bladder infections and kidney infection
    • Scarring on skin is weird - my scars become strange and thin and spread out. Also, everything scars - even paper cuts! - but, most scars spread out and aren't super noticeable, very odd
    • Mild musculoidal pseudo-tumors on elbows
    • Bone loss - until you are after menopause, they just refer to it as low bone density. My levels from my DEXA are all that of osteopenia (pre-osteoperosis) and one level is right on the border of full osteoperosis.
    • Mild arthritis in knees and shoulder, shown on xray (I would bet in my fingers, too!)
    • I have been told I have fibromyalgia as well (my grandmother has it) - though, so many symptoms seem to overlap. I have been treated for this sort of simultaneously.
    • Definitely have issues with the sleep -> mood -> energy cycle (I will talk about this in another post)
    • I have also been diagnosed with Chronic Fatigue Syndrome
    • Mania (extreme enthusiasm, energy, passion, easily distracted, irritable, mean)
    • Depression (no motivation, sleep too much, withdrawn, sadness, despair)
    • Suicidal thoughts and attempts
    • Nightmares
    • Night-sweats

    Monday, June 1, 2009

    Out with the Old!

    List of medications I was taking:


    • 10 mg Midodrine (pro-amazine)- 4xday (40mg total) - for POTS (raises blood pressure)
    • 2.5 mg Florinef (fludrocort)- 2 pills, 2xday (10mg total) - for POTS (helps body retain salt)
    • 150 mg Trileptal (oxcarbazepin)- 2 pills, 2xday (600mg total) - for bipolar
    • 50 mg Elavil (amitriptyline) - 1 pill at bedtime - extra help for the depression (bipolar)
    • 50,ooo iu vitamin D - 1 pill, once every two weeks (for osteopenia, aka low bone-density)
    • 1,500 mg calcium daily (that is 1,500 mg of elemental calcium - most calcium supplements have the calcium content listed, but that doesn't mean it is the elemental calcium content. If there are 600 mg of calcium, but only 200 mg of elemental calcium, you would need to take many more pills to get to the quantity you need) (for osteopenia, AKA low bone-density)
    • Multi-vitamin (vegan)
    • Lots of sodium intake - salt, salt, salt
    • Wear compression stockings
    • Ibuprofin for general pain relief, percocet for severe pain relief, skelaxin for muscle pain


    List of medications I have tried in the past (not complete, but for referrence):


    • Celebrex 
    • Cymbalta (30mg, and 60mg)
    • Skelaxin
    • Provigil
    • Ambien
    • Imitrex (shots, pills, nasal spray)
    • Chondroitin
    • Cortisone
    • Enbrel
    • Ibuprofin
    • Lunesta
    • Mobic
    • Naproxen Sodium (Aleve)
    • Naprosyn
    • Percocet
    • Provigil
    • Topical Analgesics
    • Vicodine
    • Zoloft
    • Steroids
    • Valium
    • Ultram
    • Codeine
    • Tylenol
    • Lidocaine
    • Volteran gel
    • Effexor
    • Zoloft
    • Wellbutrin Sr
    • Prozac
    • Buspar
    • Lamictal
    • Zyprexa
    • Strattera
    • Morphine (after surgery, during surgery complications - the only pain reliever I have ever tried that really got rid of all the pain. So brief though, an hour later it was all back. But, I see why people become addicted - the pain relief is THAT good. However, I do not want to be 27 and addicted to morphine!)


    Therapies I have tried:


    • Physical therapy (did for years, didn't notice much difference for the most part)
    • Massage therapy (helps, but SO expensive, and doesn't have long lasting results)
    • Water therapy (helps a bit)
    • Light exercise (walking, short bike ride - definitely helps with mobility, but hard to do when in pain)
    • Moderate exercise (long bike rides, light hikes, things at gym, swimming - sometimes these would help, sometimes they were impossible to do)
    • Heavy exercise (10 mile hiking on advanced trails, etc. - did nothing but aggravate all ailments)
    • TENS unit (didn't do enough to notice an effect)
    • Heat/Ice therapy (helps momentarily, rely heavily on this during times of pain)
    • Some relaxation therapies (sleep therapies, sound therapy, briefly dabbled in meditation)
    • Counseling (for bipolar, PTSD, and to help deal with chronic pain)
    • Chiropractic care (more holistic approach; helps some, SO expensive to go as often as doctor recommended, which was 3-4 times a week, forever)
    • Braces on joints (currently use braces most every day, they do help keep joints in place a bit more, which helps with pain)
    • Splints (plastic ring splints, silver ring splints - in process of getting all of my silver ring splints - they are AMAZING. they really do help immensely)

    *If you have questions, feel free to post a comment below or email me.