Winging scapula

This is something another EDSer just posted about on another site. Then I got to thinking maybe. . .this has something to do with why my shoulder is so crazy. My shoulder does this big-time. My son's shoulders do it too. If I could choose one word to describe how my shoulder is it would be: DYSFUNCTIONAL

Mike the massage and energy worker guy (some of you know him) described the energy in my shoulder as "chaotic." That pretty much sums it up too.

Scapula Winging
"The scapula (shoulder blade) is the largest bone of the shoulder complex and has the greatest number of muscles attached to it. These muscles both stabilise the arm to the body and move the arm around in space. All these muscles act at the same time sometimes and oppose each other at other times, but work together like a well trained team to allow the arm to move in space. If any of these muscles are not working in the right way at the right time this leads to a break in the rhythmic motion of the scapula. This is known as a scapula 'dysrhythmia'. This leads to apparent 'winging' of the scapula."

"5. Winging of the scapula secondary to instability
This is one of the commonest causes of scapula dysrythmia (and winging). Recurrent dislocations of the shoulder leads to dysfunction of the muscles that move and support the shoulder complex and scapula. The more frequent the dislocations and the less trauma involved in causing the dislocations, the worse the scapula dysryrhmia (winging). An essential part of treating shoulder instability (recurrent dislocations) is treating the scapula dysrythmia. This is done by an experienced physiotherapist in association with a shoulder surgeon."

More info. at this website: http://www.shoulderdoc.co.uk/article.asp?section=492

Adrenal Insufficiency

Now on to another issue I have: Adrenal Insufficiency. Basically, my hormones are pretty much out of whack. Of course the endocrinologist told me my hormones are normal, but I didn't believe him. I KNEW something was not right with my body. I bought a book about Adrenal Insufficiency after I read this website:

http://www.drlam.com/articles/adrenal_fatigue.asp?page=3

When I read the part about "Ovarian Adrenal and Thyroid axis (OAT)" I almost fell off my chair!!! I knew my thyroid was a bit low, and my estrogen was too high. I was diagnosed with estrogen dominance when I took some saliva tests a few years ago, but when I took the progesterone drops they made me feel WORSE! This website pretty much explains it all!

The book I read said the same thing as this site - to fix the problem you have to learn how to de-stress and detox. They recommended the vit. C with bioflavonoids, magnesium, B and E vits. I haven't started the B and E yet, but the C and magnesium seem to be helping. I finally realized to get to this problem I need a complete overhaul in diet and lifestyle!

They also warned against eating sugar and carbs, as these "rev" up your body and kick up the adrenals even more. I've been trying to avoid these but sometimes I just gotta have a piece of chocolate ;) I think I'm doing well so far. Every little thing I can do to help my body heal is totally worth it.

Hormones

Well I've alredy explained some of the hormone issues that Chiari causes. Today I would also like to clarify some of the problems we women have with our hormone fluctuations. Every EDSer I've talked to has said that their symptoms get worse at times of hormone changes. For example, I was a perfectly healthy kid for the most part, until I hit puberty. Then my pain didn't begin until after my pregnancy. I have heard this same story from more than one EDS sufferer.

Puberty, pregnancy, menopause.

This is when our joints and bodies go crazy.

Then add to that the monthly hormone shifts. I feel like a rag doll when my hormones are shifting - all my joints are slipping and sliding around. All my symptoms get 10x worse during this time. Somehow, the hormone changes affect the collagen in our bodies. Our collagen is already too stretchy and weak, and the hormones exaggerate this. I'm always glad when it dies down and I can snap my neck back into place!

Taking charge

There has been some controversy over the neurosurgeons at The Chiari Institue. They were suspended for leaving a woman on the operating table before surgery. She was anesthetized and hair had been shaved when they realized the neurosurgeon was not there!!! This is very unfortunate. I don't have all the details and I was not involved with this, so I can't really draw any conclusions.

However it got me thinking about doctors and my experiences over the last few years.

When you are dealing with a chronic and somewhat unexplained condition like Fibro, Chiari or EDS I have learned it is very important to TAKE CHARGE! It is very easy to fall into the "victim" mentality. "Poor me I have all these problems and who will save me?" That is when people look to doctors to "save" them from their ailments. I think it's good to seek medical help when needed. However when the medical personnel throw up their hands at you - that is when you need to TAKE CHARGE!

I took charge by researching like crazy. I was determined to figure out WHY I was having all these problems. When I finally figured it out it was like a lightbulb going off in my head. I was able to "connect the dots" to all the odd problems I'd had my whole life. I joined the hypermobility syndrome, EDS, and Chiari online support groups and absorbed all the info. like a sponge. Soon I was learning different ways to cope with the pain and difficulties and I started passing my learnings on to others.

I learned how to say "no" to doctors and medical staff. I learned how to talk to them in a way that they would listen. The ones that didn't listen, I learned to walk away and not feel guilty. ASSERTIVENESS. I learned how to find different docs for different things and talk about my issues in an intelligent way.

When I tell people about my new diet, they ask if a doctor told me to change my diet. I say "Well yes, and no. The doctors always tell you to eat more fruits and vegetables and less fat and sweets. They didn't tell me but on the other hand they did tell me." ;)

So. . .taking charge. I can't stress this enough. YOU have to realize that YOU are in charge of your life. Yes you may have these problems, but what will you do with them? Wallow in self-pity OR take charge and make the most of what you DO have?! It is very important to focus on what you DO have rather than what you DON'T have. I went through a period of despair and depression - it is part of the grieving process. Then after that I dusted myself off and realized that I am in charge of me. No one else is. I started feeling better once I changed my mindset. Sure I still have bad days, but they are fewer and more far between than they once were!

Multiple Chemical Sensitivity

When I was little, I was allergic to dust and smoke. I would start wheezing when my dad would smoke his pipe and I told him to quit! My doctor finally gave me an asthma inhaler which I would use whenever the wheezing would start up.

Now that I am older, I suspect I've got Multiple Chemical Sensitivity.

"What CAN be said about defining Multiple Chemical Sensitivity - and in order to help the patient decide whether they truly have MCS or another allergy-related illness - is that the following deciding criteria apply to Multiple Chemical Sensitivity:

• the patient exhibits problems - often an allergy-like reaction to both large often extremely low levels of irritants/toxicants/triggers : other individuals present at the same time may be unable to detect anything at all or anything unusual or out of the ordinary.

• the problem is ongoing, ie. chronic, and not a "one-off" event.

• the same symptoms are reproducible with repeated exposure to the same triggers.

• the patient is affected by many different triggers.

• the patient improves when triggers are absent."
- From www.multiplechemicalsensitivity.org

According to this website, the symptoms of MCS are:

burning, stinging eyes
wheezing, breathlessness nausea
extreme fatigue/lethargy
headache/migraine/vertigo/dizziness
poor memory & concentration
runny nose (rhinitis)
sore throat, cough
sinus problems
skin rashes and/or itching skin
sensitivity to light & noise
sleeping problems
digestive upset
muscle & joint pain

As I've gotten older I've noticed more and more of this. I can't wear perfumes or use air fresheners anymore. Smells will set me off! I already mentioned the MSG and chemicals in food that don't agree with me.

So in my quest for feeling better I've been trying to reduce the chemicals in and around me! First, I found a toothpaste replacement: BAKING SODA! At first it tasted quite horrible to me, but I got used to it! Then someone told me to mix in some sea salt and peppermint oil. Not bad! For better mouth freshening I found a lady who makes toothepaste and other natural products at www.healing-scents.com. Her toothpaste is GREAT. It doesn't scrub as well as the baking soda but it tastes so good and freshens your breath.

For deodorant, I bought one of those crystal mineral deodorants. I use that at night, and then in the morning I use the healing-scents natural deodorant. It works, by George.

Finally I am trying to eliminate the chemicals in all of my other body care. I found some organic soaps and next up will be organic shampoo and mineral make-up. Healing-scents has some of this and other stuff can be found at local health food stores.

I also noticed that I had trouble breathing while cleaning. Of course I was using the name-brand store-bought bathroom cleaners! I found some sites with recipes for making your own less harmful cleaners. I was so surprised how cheap/easy they were to make and how well they worked.

So, the detox is an ongoing process. I do feel 100x better when I use the natural products with essential oils. For Mother's Day I chose a sample pack of 8 different oils and I'm learning what each one does! :)

More MSG websites

I am really excited because I just found 2 more websites about MSG and excitoxins!

SAY NO TO MSG
http://www.saynotomsg.com/index.php

NO MSG FOR ME
http://nomsgforme.com/default.aspx

It seems the word is really getting out on MSG :) I tell all my friends with EDS, Chiari and Fibro. about how MSG is unhealthy. Sometimes I wonder what the world would be like without MSG. Fast food would taste like the unhealthy crap it is, people would be skinnier and healthier. Perhaps where would be less eating disorders of every kind, because people would lose their cravings for food and obsession with their weight. Kids would behave better in schools! People would be more pleasant! After Thanksgiving dinner no one would lay around and complain how terrible they feel! Everyone's brains and bodies would be in harmony. The down side would be many people would have to learn how to COOK ;) And who knows, they might get more exercise as they grow their own gardens!

Anyway, those are my thoughts on MSG today. Read the websites and you'll learn more!

Pituitary gland

Well what, you may be wondering, does the pituitary gland have to do with the thyroid gland? Turns out, it has a lot to do with it.

It is amazing how much I've had to learn in dealing with Chiari and EDS. Here is an explanation of what the pituitary gland does:

"The pituitary gland is a tiny organ, the size of a pea, found at the base of the brain. As the master gland of the body, it produces and secretes many hormones that travel throughout the body, directing certain processes stimulating other glands to produce different types of hormones. The pituitary gland controls biochemical processes important to our well-being.

The pituitary gland makes these types of hormones:

Prolactin - Prolactin stimulates milk production from the breasts after childbirth to enable nursing. It also affects sex hormone levels from ovaries in women and from testes in men.

Growth hormone (GH) - GH stimulates growth in childhood and is important for maintaining a healthy body composition and well-being in adults. In adults it is important for maintaining muscle mass as well as bone mass. It also affects fat distribution in the body.

Adrenocorticotropin (ACTH) - ACTH stimulates the production of cortisol by the adrenal glands. Cortisol, a so-called "stress hormone" is vital to our survival. It helps to maintain blood pressure and blood glucose levels.

Thyroid-stimulating hormone (TSH) - TSH stimulates the thyroid gland, which regulates the body's metabolism, energy, growth, and nervous system activity. This hormone is also vital to our survival.

Antidiuretic hormone (ADH) - ADH, also called vasopressin, regulates water balance. If this hormone is not released properly, it can lead to too little hormone (called diabetes insipidus), or too much hormone (called syndrome of inappropriate ADH). Both of these conditions affect the kidneys. Diabetes insipidus is different from the more well-known diabetes mellitus (or type II diabetes), which affects the levels of glucose in our bodies.

Luteinizing hormone (LH) - LH regulates testosterone in men and estrogen in women.

Follicle-stimulating hormone (FSH) - FSH promotes sperm production in men and stimulates the ovaries to enable ovulation in women. Luteinizing hormone and follicle-stimulating hormone work together to cause normal function of the ovaries and testes."
- From http://www.hormone.org/Pituitary/overview.cfm

So you see, the pituitary is in charge of lots of things. I'm not a doctor, but I did get copies of my own MRIs to study. I stared at them for hours until I could see my pituitary and if I was looking right, my pituitary does look "squished." People with Chiari get fluid buildup in their brains because the area where the spinal cord descends (the foramen magnum) is too blocked up for the fluid to flow out at the proper rate. The pressue of the fluid and the fact that the brain is overcrowded causes the pituitary to be damaged and/or not operate correctly.

I asked a neurosurgeon who knows about Chiari, if he thought my hormone imbalances could be caused by this pressure. He said it very well could be, and there was no way to tell if I had surgery if the function would return to normal.

Hypothyroid!

Now I will talk about hypothyroid, another condition I have.

"Hypothyroidism is a condition in which the body lacks sufficient thyroid hormone. Since the main purpose of thyroid hormone is to 'run the body's metabolism,' it is understandable that people with this condition will have symptoms associated with a slow metabolism. Over five million Americans have this common medical condition. In fact, as many as ten percent of women may have some degree of thyroid hormone deficiency. Hypothyroidism is more common than you would believe...and, millions of people are currently hypothyroid and don't know it!"
-From endocrineweb.com

I started feeling something was "off" right after my son was born. I knew I had a heart condition, but it felt like more was not right. I felt totally exhausted and drained. My doctor checked my thyroid levels and said that I was "within normal limits" so it couldn't be my thryoid, now could it?!

As my son grew older I continued to feel worn down and not with it. I was always cold and didn't have much energy. Finally that was topped off with headaches and muscle spasms. I had a saliva test which showed estrogen imbalance, but that was all I could figure out on the hormones because the doctor kept testing my thyroid and kept saying it was in the low end of normal.

In Feb. of 2007 I went to an endocrinologist thinking that he might be able to shed some light on the situation. NOT! He tested my blood for everything possible and his conclusion was "There is nothing wrong with you. You are perfectly normal."

I believed that for about. . .2 months and then reality set in. I was NOT FEELING NORMAL! There had to be an explanation! So, I went to an osteopath that another doctor recommended. He was good with hormones and chronic pain. He ended up re-testing me and said that the numbers were not ALL of the story. He said all doctors should LISTEN to their patients, not just look at the numbers! You could have knocked me over with a feather, because I had never heard a doctor say that before!

To make a long story short, he started me on Armour thyroid med. and I immediately began feeling better. I have more energy, I'm not as cold as I was. I can wear short sleeves to work and not freeze to death! My muscle spasms went away for a short time (they're back now, but it was amazing how they disappeared when I first started the Armour).

I "fired" this doc because he was the one who did the prolotherapy shots. But, I was impressed that he was able to pinpoint my thyroid problem. Just because I was barely into the "normal" range, my other docs thought I was fine. But I was still displaying all the symptoms of low thyroid.

Symptoms of Hypothyroidism
• Fatigue
• Weakness
• Weight gain or increased difficulty losing weight
• Coarse, dry hair
• Dry, rough pale skin
• Hair loss
• Cold intolerance (can't tolerate the cold like those around you)
• Muscle cramps and frequent muscle aches
• Constipation
• Depression
• Irritability
• Memory loss
• Abnormal menstrual cycles
• Decreased libido

People with Chiari and EDS often have thyroid problems as well. No one really knows why - it could be that the Chiari pressure affects the pituitary gland.

A good site for hypothyroid info. is http://www.thyroid-info.com/book.htm

EDS Mystery Diagnosis Show

Watch Ehlers-Danlos Mystery in Educational  |  View More Free Videos Online at Veoh.com


It is the second "half" of this episode.

Diet

OK I already posted about MSG and how it is evil ;) I have continued investigating diet and how it impacts my health. When I was on the MSG elimination diet, basically all I could eat was organic chicken, eggs, cheese, brown rice, organic milk, rice milk and fruits/veggies. The only sweeteners allowed were honey and raw sugar. I was amazed how much better I felt after a couple months. I even lost 10 lbs.! Then, I started slowly introducing things back into my diet to see how it would affect me.

Oats were pretty good for me. Then I added whole wheat flour. Since I had eliminated so many things from my diet, it was way more easy to tell which things were "setting me off." I started to realize that if I ate TOO much wheat, milk, and raw sugar, my sinuses would start plugging up!! So I cut way back on milk, and now I only use a little on my cereal in the morning, and for cooking and preparing foods. If I am in the mood for drinking milk, I drink rice milk which is pretty good once you get used to the fact it tastes like RICE :)

Beef is OK, as long as they don't put any extra chemicals in it. Pork I found is a big no-no. The only meats I can eat are chicken or turkey (with no extra "broth" or chemicals added, the purer the better!), and lean beef.

Also I found my tastebuds changed! The fake stuff tastes weird to me now that I am accustomed to eating natural foods. Fruits and veggies have 10x more flavor! Now I eat an orange and am like "WOWWW this tastes awesome!"

The down side is there is a lot of stuff that I react to, either by sinuses clogging, or feeling unable to breathe, or stomach ache. The up side is I feel better and so does my family. Everyone is in a much sunnier mood after meals. Makes you a bit worried about what everyone else is eating!

Supraventricular tachycardia

Now, on to my wacky heart issues :) I was a relatively healthy kid, and nothing seemed overly different about me until I was 13. One of my friends talked me into trying out for the track team. I was a good runner, so I agreed and my parents scheduled a routine physical. That was when my doctor discovered my wacky heart problems! I had an irregular heartbeat! I remember crying and crying during that appt. because we didn't know what was wrong. My parents took me to a cardiologist in Ft. Wayne who did a thorough echocardiogram. Several EKG readings were done as well, and the conclusion was that there was nothing STRUCTURALLY abnormal about my heart.

Then I started having strange spells of tachycardia. These were very frightening because they would just hit out of nowhere, seemingly for no reason. My heart would be so fast I was breathless and weak. The beats felt so hard they shook my whole body. I would lie in bed for hours waiting for it to stop! Back to the cardiologist I went!

They diagnosed me with supraventricular tachycardia.

"Supraventricular tachycardia (SVT) is an abnormal fast heart rhythm that starts in the upper chambers, or the atria, of the heart. ("Supraventricular" means above the ventricles, "tachy" means fast, and "cardia" means heart.)

Normally, the heart's electrical system precisely controls the rhythm and rate at which the heart beats. In supraventricular tachycardia, abnormal electrical connections (or abnormal firing of the connections) cause the heart to beat too fast. Typically, during supraventricular tachycardia episodes, the heart beats faster than 100 beats per minute. Sometimes the heart beats as fast as 300 beats per minute. Usually, the heart returns to a normal rate (60 to 100 beats per minute) on its own or after treatment.

Supraventricular tachycardia (SVT) is also called paroxysmal supraventricular tachycardia (PSVT) or paroxysmal atrial tachycardia (PAT)."

- From http://www.webmd.com/heart-disease/tc/supraventricular-tachycardia-overview

My heart would beat at 200+ bpm. I didn't usually faint except when I was pregnant I fainted twice with it. When I felt a spell coming on I had to lie down or sit down really quickly. I suffered with this from age 13 - 25. In July of 2000 I underwent an electrophysiology study and radiofrequency ablation. That took care of the extra electrical pathway that was causing the problem, and I was able to go off my beta-blockers. Until about 5 yrs. after that, they found my tachycardia was coming back and put me back on them :( I don't have the "spells" of super-fast tachycardia anymore, I just tend to have a pulse over 100 bpm if I don't take my meds.

Yoga

I've heard lots of conflicting reports about yoga. Some people swear by it, and others say it's too hard on the stretchy joints. About a year and a half ago, I thought I'd give it a try.

Our yoga instructor teaches classes to the residents at the retirement community where I work. She teaches our class for "younger older adults." Yep that about fits me, with all the aches and pains I have only being 34 ;)

She started us out with really easy poses and gradually worked up. That was awesome for me, because certain areas are very tight and if I try to overdo it, I would definitely be sorry! All her poses are very gentle, and she gives you different options. She will tell us different places to put our feet, our hands, etc. so that we can make each pose as easy or difficult as we want.

I think this class has really helped me "stretch out" and build strength in my muscles. Sometimes I will go to class feeling clenched up and crampy, and I leave feeling very relaxed and full of energy. My balance is better, and my body coordination is better. I'll go to pick something up off the floor and go "Whoah, how'd I get all the way down here???!"

My favorite poses are "balancing pigeon", "fish" and "cobra." I like the cobra where your legs/hips are on the floor and your arms are stretched straight - it really gives a good stretch in the midsection and lower back. But she says that is too much for the back, and has us bend our arms and rest on them that way.

Overall I give gentle yoga a big THUMBS UP!