EDS on Mystery Diagnosis May 4, 5 & 9!

Speaking of Mystery Diagnosis, I just received the dates that it will air an episode on EDS!

Ehlers-Danlos Syndrome Network C.A.R.E.S. Foundation is Proud to Present:
Ehlers-Danlos Syndrome On "Mystery Diagnosis"
On The "Discovery Health Channel"
Look For The Episode Title:

"The Baby Who Wouldn't Stop Crying "

This title is for the first story, the EDS Story will be the
second story each night it's aired on Mystery Diagnosis

(New) Dates & Times of EDS Mystery Diagnosis

May 4, 2009 at 10:00pm

May 5, 2009 at 2:00am

May 9, 2009 at 5:00pm

http://www.ehlersdanlosnetwork.org/mysterydiagnosis.html

Doctor visits

This year I am boycotting the doctor :) I have been to soooooo many doctors it's not funny. I was watching Mystery Diagnosis yesterday and there was one story that seemed so familiar. A lady had a son, and the son displayed some odd characteristics. He had long fingers, his breastbone was slightly caved in, and his muscles were weak and floppy. His reflexes were terrible despite months of PT. He was also abnormally tall. His mom went around to doctors for FIVE YEARS trying to figure out what was wrong with her son. Many doctors laughed at her, said she was an overly-anxious parent, etc. FINALLY one day she was researching Marfan Syndrome on the computer. She was shocked to learn that her son had ALL of the characteristics of Marfan, so she took him to a cardiologist. The cardiologist examined him and found his aorta, the main artery that carries blood from the heart, was 50% wider than in normal people. They were so glad they caught it before the aorta ruptured!!! And it vindicated the mother's suspicions that something was not right.

This is exactly how I felt when I was researching EDS. I went to my GP and asked him about Marfan one day and he LAUGHED AT ME! He told me I had been reading too many websites! I felt so foolish.

Later on I stumbled upon info. on EDS. I was determined to figure out why I was having so many headaches and muscle spasms in my shoulder/neck. I was convinced this was my problem, but I called the local EDNF support group to be sure. I described to the support group leader what I had been experiencing. I also mentioned my heart problems and she said "You sound like my twin!!" She had the SAME heart condition, and almost all the symptoms I was describing! She directed me to Dr. Lavallee in South Bend and the rest is history.

Since my dad is really tall and I had some characteristics of Marfan, I did see a geneticist in SB, just to rule out Marfan. She didn't think I had the exact body proportions of Marfan - my fingers and arms/legs weren't quite long enough. The ironic thing to me is that Marfan is also a connective tissue defect and similar to EDS. And that doctor laughed at me!!! My hubby also thought I was nuts!!! Moral of this story is: TRUST YOUR INSTINCTS and LEARN everything you can about your health issues. Sometimes you might know more than your doctor does.

Info. on Marfan Sydrome:
http://www.marfan.org/marfan/

Prolotherapy

For me, I would have to give prolotherapy a big thumbs down. I had a series of prolotherapy injections in my neck and shoulders last summer. The osteopath I went to said he had "great hopes" for me. I would go in every few weeks and he'd inject some type of solution into the tendons next to my spine and shoulder joints.

This site gives a good explanation: http://prolotherapy.com/prolodefine.htm

The muscles were SUPER sore right after the injections were done. I had trouble moving those areas for a couple of days. The session where he injected my back was horrible. I swear he did 20 shots. . .or more. I am pretty used to getting shots, but the sheer quantity was terrible. He would numb up each area first but still! I got really dizzy and was just hoping I wouldn't pass out.

So then I waited. . and waited. . .for the shots to work! Curiously, the pain and spasms continued as if nothing had been done! So all that messing around and $$$ spent for nothing.

When the doc. saw that the shots were not working he started getting an "attitude" with me. Despite the fact I said I had EDS and Chiari, he wanted me to start PUMPING WEIGHTS. He told me to go to a sports equipment store and buy the largest weight I could pick up!!!!!!!

The topper was he thought I should do his neck exercise machine to strengthen my neck. I grudgingly agreed to do a "test" on this machine. BIG MISTAKE! They strap you into a chair so your legs and shoulders are pinned down. Then you rest this head on this contraption connected to weights, and they ask you to push your neck forward and backward to measure strength and flexibility. Well no surprise, the machine concluded my neck was weak and inflexible. I had migraines for four straight days just from the test! They wanted me to come back and exercise on their machine 2x a week for a couple months. I said "No thank you, four days of migraines is enough."

Now it's been about a year and I still have not seen any improvement from the prolotherapy. So that's why I'll give it a big thumbs down. Maybe it works for other people, but not for me!

Biceps tendon

My right shoulder has been bothering me for years. It has just gotten worse and worse. The first sign of trouble was when I worked for a grocery store bakery during college. I tried lifting some plastic flats full of frozen cakes with my right arm. That was not a very good idea because my shoulder hurt a lot afterwards!

Then I was in a car accident and had a lot of neck pain. The insurance paid for me to see a chiropractor. It helped quite a bit but the chiro. could not figure out my hypermobile shoulders. They moved in non-normal ways. . .

Then when I was investigating EDS I went to Dr. Lavallee in South Bend, who is a sports medicine doc. and EDS specialist. He has EDS himself, so I figured he could tell me something useful. He said my shoulders displayed multidirectional instability. But he didn't explain what that meant. My insurance didn't cover his PT services so I never went back.

I work at a desk all day and my arm is usually held up at a 90 degree angle. I had 2-3 workers comp. claims for tendonitis in my right arm. They did a bunch of ergonomic studies on my desk and even got me a special keyboard and armrests for my chair. I did PT for months and they were still puzzled why my shoulders kept slouching forward no matter how many exercises I would do.

When my shoulder started acting up again, I didn't know what to do. I slipped and fell on some ice and my right hand started going numb. I went to my family doc and he said "Oh it just got jostled a little - the numbness will go away on its own. Take some ibuprofin and let me know if the numbness doesn't go away." Of course it did and I was still at a loss what to do about this weird shoulder. It pops, crunches and grinds. It spasms and hurts constantly.

FINALLY yesterday I got some answers! My cranio-sacral therapist was working on it and found that the tendon that connects my biceps muscle to my shoulder blade was slipped out of its "groove." This was causing my shoulder to round forward. YEP! That was exactly the problem!! She told me to get a jumper's knee strap (a brace found at any pharmacy), remove the plastic tubing, and put it around my upper arm. This would anchor the biceps muscle and its tendon to the humerus and keep it from popping back out of its groove. She said to wear it for 4 mos. or so, and then I could try taking off the brace and seeing if it would stay. She said that it should grow new connective tissue around itself. Crazy huh?! I could not believe it. I put the brace on right away and my shoulder felt so more stable! I was so shocked that all the doctors I'd seen had never noticed this tendon being out of place.

The tendon in question is labeled "Long biceps tendon" in the photo. Photo is from www.ortho-md.com.

MSG - monosodium glutamate

Here is a cool article from Dr. Mercola on MSG
http://articles.mercola.com/sites/articles/archive/2009/04/21/MSG-Is-This-Silent-Killer-Lurking-in-Your-Kitchen-Cabinets.aspx

Last fall I made an amazing discovery. I was eating some "store brand" ice cream and noticed a peculiar burning sensation in my mouth. Vanilla ice cream should not be spicy! I asked one of my friends who is vigilant about her diet. . .she said "Oh that's from the MSG they put in ice cream!" I was shocked! MSG in ice cream?! I did some research and started putting 2 and 2 together. I almost ALWAYS got migraines at parties. Showers, birthday parties, cookouts, etc.

So I decided to make my own ice cream and I started avoiding soda, chips, and anything that said "MSG" on the label. Amazingly I began feeling good at parties! I made my own ice cream for parties I held at my home and I stopped drinking soda. (I was amazed how easy it was to make ice cream with just some cream, sugar, milk, and a home ice cream maker.)

I was really excited about my new findings, so I ordered a book called "Battling the MSG Myth." It has lots of good info. and TONS of recipes! I went on her test diet to see how good I could feel on totally MSG-free foods. It was kind of challenging at first but soon I really started feeling better! I still had pain but my "brain fog" was greatly reduced. I didn't feel puffy and groggy anymore. If I would accidentally eat some MSG my body would react even more negatively. So you know, MSG is not good for me or for anyone!

Here is the MSG myth website: http://www.msgmyth.com/

Fibromyalgia

This is another big one - the big Fibro. I have been going to the same massage therapist for several years, and he kept mentioning how similar I was to his fibro. clients. I reacted the same way to car trips, weather patterns, etc. He had to work on my muscles as if I had fibro. He said with fibro. he has to work very gently, or the muscles hurt worse. Then my mom was diagnosed with fibro. The last straw was. . .my neurologist diagnosed me with fibro!!! I had also been going to him for years, for the same ol' headaches. He said because the pain had been going on so long, and seemed to originate from my muscles, he was pretty sure I had fibro. There are many people with both EDS and fibro.

"Although increased sensitivity to pain is the main symptom of fibromyalgia, fibromyalgia syndrome and other types of chronic pain diseases form a family of overlapping syndromes. Therefore, even though the most common symptoms are pain and fatigue in muscles and tendons, often it is seen that those suffering from fibromyalgia will have other associated conditions and symptoms. It is because of these overlapping symptoms that fibromyalgia cam to be categorized as a syndrome rather than a disease."
- From fibromyalgia-symtoms.com

OVERLAPPING SYMPTOMS is right! It's hard to tell what is the EDS, what is the Chiari, and what is the fibro. It all kind of overlaps - that's why I called this blog my "health soup" :)

My neurologist tried me on the most popular fibro. drugs - Cymbalta and Lyrica. Cymbalta hurt my stomach so bad. I mean - like a stomachache that lasted for hours. So, I quit taking that. Then he replaced my Topamax with Lyrica. They are sort of similar anti-seizure meds. I felt quite a bit better on Topamax and even better than that on Lyrica. So, I'm on Lyrica now and I really like it! It cut down on my muscle spasms quite a bit.

The disturbing thing is my pain started in my neck/shoulders area and now it is spreading down my back :( Fibromyalgia stinks!

Vitamin C

I have heard a lot of people say that EDSers need vitamin C. Then, I read a book about adrenal insufficiency which also said vitamin C was very important. They recommended vit. C with "bioflavonoids."

"Bioflavonoids are substances found in vegetables and fruits, particularly citrus fruits, that can help improve the body's ability to absorb and use vitamin C. Though not really vitamins (they are not considered essential for life), bioflavonoids are sometimes called "Vitamin P." Traditional nutritionists assert that there is no such thing as vitamin P. However, there are plant compounds known as bioflavonoids that have the potential to help treat certain conditions in the body, as well as promote health and strengthen the immune system."
- From http://vitamins.ultimatefatburner.com/bioflavonoids.html

So, the other day I was checking out my local health food store which I hadn't been to in AGES. They had some vit. C with bioflavonoids, so I bought a bottle to try. I have had the strangest sensation. It feels like the muscles, or something over the muscles is sore and prickly and needs to be massaged out. Kind of like knots or tangling, because the muscles have been clenching up? It's really weird but I can't help but think it's the vit. C working!

TMJ

EDS affects every joint in a person's body. Basically all my joints like to slide halfway out of place. Not ALL the way out, mind you, but just enough to be annoying - sigh!

I was going to an osteopath here in town, and she kept telling me "I'll bet you have TMJ as well - you need to get that checked out sometime." She told me it was expensive to treat and not covered by insurance. So I kept putting it off and putting it off until this past January when I was at the dentist. He asked me if I was having any issues with my teeth and I said "No, but my jaw keeps cramping up terribly. I think I have TMJ."

"Everyone has TMJ," he said. "In fact, everyone has TWO!" Just a little dentist humor, he said. He described how my Temporomandibular Joints could be in the wrong place, and a "splint" could be used to open up my jaw and cause the joints to "seat" higher.

Heck, I've tried just about everything else for my headaches so why not? I ended up having to pay for 1/2 of the splint cost. The splint is this clear-ish plastic thing that fits over my upper teeth. I am supposed to wear it as much as possible but it looks strange and makes it hard to talk very well. Now I've been wearing it at night only.

But it seems to have helped! Right away my jaw spasms calmed down immensely. I still have some, but nothing like I had before. I still get my headaches but at least the jaw is more relaxed and calm.

Car trips

Easter is coming up, and for a lot of people, it means CAR TRIPS. For a bit I thought we were going to have to travel Easter Day. Then those plans were canceled and I have to admit I was relieved. I get a migraine on 90% of car trips I go on. We took a 4-hr. trip last weekend and I got such a nasty and evil migraine that day. My cranio-sacral therapist suggested tipping the seat back and "propping" my head up with pillows. I tried that and - no luck. I still got a migraine anyway! I could feel the car "jiggling" my neck all different directions no matter how many pillows I put around myself.

On the way home, I leaned against the car door with a pillow. That seemed to be better! So, I am still not sure what I can do to prevent this. It sucks to get a migraine whenever I go somewhere that is supposed to be fun.

Migraine triggers

People who have migraines are told to find their "migraine triggers." That is easier said than done! Sometimes something can cause a headache and other times I can do the exact same thing, and NOT get a headache. However over the course of the past several years I have slowly figured out what some of mine are.

MIGRAINE TRIGGERS
• Red wine
• Pork
• MSG in ANY form. Monosodium glutamate, autolyzed yeast extract, textured vegetable protein, soy lecithin, "natural flavors" or "spices" are all other names for MSG.
• Soda
• Car rides over 30 min.
• Long periods of inactivity
• Weather changes (I took the storm photo of my backyard last summer. Any sudden weather system or 20 degrees up or down in temp.)
• Fatigue
• Too much exercise
• Excessive jarring of my head/neck
• Stress

OK so those are the ones I have identified so far. I suspect I may be sensitive to dairy and wheat, but I'm not certain on that yet. I've cut WAY down on my dairy, wheat and sugar.

Ehlers-Danlos Syndrome

OK so - on to tackle another strange and somewhat unknown condition I have!

"Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues.

The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues)."
- From MedicineNet.com

There are six main types of EDS: Hypermobility, Classical, Vascular, Kyphoscoliosis, Arthrochalasia, Dermatosparaxis. There is also an "other" category of X-linked EDS. The types are being re-classified and refined all the time.

I was typed as hypermobility, only because I didn't manifest the symptoms of the other types. But there is a high possibility I could be typed differently in the future with more testing and/or new research into the different types.

So what does this mean to me?

Basically it means I am in pain constantly! Unbeknownst to me, my muscles have been struggling to keep my joints in place my entire life! My shoulders pop slightly out of joint and are very unstable. My neck slides around like a bag of marbles. My entire spine subluxes constantly. My joints are all so stretchy that the muscles must clench up just to keep me together!

The worst part is the cervical instability. When I sleep, my neck joints slide off to one side or another and my head looks like it's on crooked! In the morning I have to stretch and pop my neck until it feels more normal again. The spasms that this produces are one main cause of my migraines I believe. It's hard to tell how much is the Chiari and how much is the EDS. These conditions often go hand-in-hand!

The picture shows the joint hypermobility and skin fragility of EDS.

Rebound Headaches

Ever since my chronic headaches began, the doctors have been warning me about REBOUND HEADACHES. These are caused by taking too much pain medication.

"Pain relievers may offer quick relief for occasional headaches. But there's a limit. If you find yourself taking pain medication more than two or three days a week, you may actually be contributing to your headaches rather than easing them. It's a cycle known as rebound headaches.

The cycle starts when you take too much headache medication — more than the label instructs or your doctor prescribes. Soon, your body adapts to the medication. You may not even realize that you've been dosing yourself too often until you miss a day and your head starts to hurt again — sometimes more intensely than before."
- From the Mayo Clinic website

I do not believe I am suffering from rebound headaches. I do take OTC headache medication a LOT, but never more than ONE DOSE in any 24 hr. period. My neurologist recommended no more than 3 doses of OTC meds. per week, which is what I have been striving for. I can't always do that, depending on the weather, stress, overactivity, etc. Since I started taking Lyrica I have been able to skip the OTC meds quite a few days. For those days I am grateful. Maybe someday taking OTC meds will be the exception, rather than the rule for me.

Arnold Chiari Malformation

I guess I will start with the most confusing one for people. It's confusing because most people have never heard of it. And most of the doctors I've seen deny I even have it. It's called Arnold Chiari Malformation.

"Chiari Malformation (Arnold-Chiari) is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms."

My malformation is not overly severe, and that is why non-Chiari specialized doctors deny I have it. I have seen 2 Chiari specialists who both said I had Chiari but not severe enough to warrant the risks of surgery. However I still experience annoying symptoms everyday. They told me unless I was passing out, or couldn't breathe, or not swallowing or falling down, they wouldn't do the surgery. Nice eh?

There are MANY symptoms of Chiari and each patient is different. The symptoms I experience are:

Headaches/migraines
Muscle spasms in neck and upper body
Lack of coordination
Trouble with speech (slurring/losing words)
Fatigue
Nausea
Tachycardia (fast heart rate)

This is just a sampling of what people with Chiari experience. It is no fun :(

To read more about Arnold Chiari Malformation, visit:
www.conquerchiari.org
www.chiariinstitute.com

Graphic from Conquerchiari.org

Welcome

Hello everyone, welcome to my little blog "Sarah's Health Soup"! I have had this blog for several years, but it was very unorganized and kind of a collection of EVERYTHING going on in my life. Now I have decided to focus on my health issues. For those of you with health issues, or those of you who want to understand what the heck is going on with my health issues, here you go!