New vitamins

I just started taking Dr. Teitelbaum's "Energy Revitalization" vitamins. I found his website, took his quiz and read a lot of the articles. Personally I believe that it is very important to take charge of your own health. That's why I never stop researching and being curious. I've tried various vitamins with different results. For awhile I took Reliv, an extremely expensive vitamin powder that they claim cures all ills. I'm sure it has helped some people, but for me I felt better maybe the first week or so, then went back to how I was before. Then I tried Emergen-C packets which had sort of the same effect. They helped me feel a "little" better until I realized I was sensitive to the artificial flavorings in it. I also have been taking Natural Calm magnesium supplement. That has helped me a bit and has no artificial stuff in it.


Well this Energy Revitalization stuff seems to have all the things fibro patients need. However it tastes horrible!!! (Just my personal opinion ;) ) I can tolerate it only mixed into a fruit smoothie. My husband loves this because he loves smoothies and I've been making them every night! Also I did notice the powder has soy lecithin and some other questionable ingredients for me. I hope that is a small enough part of the ingredients that it will not affect me too badly. I know I need more B vitamins in particular. It also has iodine for thyroid health. The new doc yesterday said my thyroid was "thick" and I was borderline anemic :( So I'll be giving this a try and when I go back to the doc next month I'll let her look at the vitamins and give me her opinion on them.

Holding back the tears

This is a familiar situation for most chronic pain sufferers. You hear about a new doctor and someone says he/she is "The Best." So what the heck, you make an appointment. It's worth a try! Then the day of your appointment you spend a nervous 1/2 hr. waiting for the doctor to finally come into the room. During this time you run through many different scenarios in your head. You observe the office surroundings and wonder how this predicts the doctor's personality. You overhear other patients talking to the doctor and the nurses. You wonder "Is this doctor really The Best? How will they react to me? What should I say/not say? What if they think I'm a hypochondriac?" etc. Many of these appointments for me are very nerve-wracking. I am nervous, then apprehensive and finally relieved but in the end extremely disappointed. I've left several appointments in tears.

Well luckily today was not one of those. I started to tear up a bit when the doctor lady told me that I was in a bad situation and I would just get worse and worse to the point I would be disabled. She kept saying "You're too young to have these problems." I said yeah. . .tell me something I don't know! She said there must be something that is causing all this. She said "Young people just DON'T have these problems out of nowhere like this." I said uh-huh.

I originally went to her for thyroid issues but she is actually going to try to get to the bottom of my problems. She said I probably have a genetic disposition to get fibro and migraines, hypothyroid, etc. but there has to be something that is triggering it to act up this bad. She's going to try to figure it out. I said "I hope so - SOMEONE'S got to do it!"

She is re-testing my blood for various food allergies and hormone levels. Also she's going to have me send in a stool analysis (EEWWWW) so she can figure out what is causing my irritable bowels. She said I may have metal toxicity as well as food allergies. She will also look at all the supplements I'm taking. Some of this is not covered by insurance but I am soooooo sick of doctor hopping and getting nowhere! Oh and she is going to help me with my original problem - she knew a pharmacy that had some Armour Thyroid :) To be continued. . .

Crooked necks

Here is another thing I ponder. I've always had a crooked neck. Even in my baby pictures, if you look closely enough you can see my neck is really crooked! I never really thought about it until I got older and my neck started hurting. Then I started looking at all my younger pics and noticed that my neck leans in ALL of them. What's up with that?!

I'm not sure if it's from the EDS, the Chiari or if this is just a freak of genetics. I also remembered that my great-grandma (mom's mom's mom) had a really crooked neck. My mom has a picture of that side of the family (I was always amazed at how LARGE the family was). Here you can see them above in a photo from 1915. The mom's name was Melvina. Such a pretty family. My great-grandma is in between the 2 parents. You can totally see Melvina and my great-grandma Vervia have crooked necks! In fact many of this family have crooked necks! My mom said this side of the family had a lot of health problems. She always said that the mother didn't live much longer after this picture was taken. Was it from having so many children? Or her horribly crooked neck? Did she have EDS and Chiari like me?

I suppose back in those days you were just labeled "sickly" or "bad constitution" or something like that. There wasn't much they could do for you. I will always wonder about this genetic link to the crooked neck.

Signs, Symptoms and Solutions for Poor Thyroid Function

Here is an awesome article from Dr. Mercola on poor thyroid function:

Signs, Symptoms and Solutions for Poor Thyroid Function

This article makes a lot of sense to me. I feel that I'm a super sleuth on the track of some great mystery. Why do I feel so crappy and what do I do about it? Herein lies the mystery. I think I've made some great progress :)

I called the compounding pharmacy yesterday to ask about thyroid meds they offer. They said they can compound T4 and T3 together into a single pill. I said, "WOO HOO!" I just have to call the naturopath and get an appt. I am quite sure that if I called my regular doc and asked for a T4/T3 presription he'd say "What's wrong with the Synthroid I gave you?" Um. . .did I mention it made me feel cold and made my heart flop around in my chest?? My heart does enough flopping without Synthroid. But he only looks at the numbers on my blood test. So I'm calling the naturopath today. Wish me luck!

Thumb subluxation

Owww my poor thumb! Since my shoulder started going bad I have had to use my left arm/hand for more and more. Especially when my right arm was totally incapacitated, I had to use my left hand for EVERYTHING! Then, my left thumb began to protest at the extra work load.

"The three phalanges in each finger are separated by two joints, called interphalangeal joints (IP joints). The one closest to the MCP joint (knuckle) is called the proximal IP joint (PIP joint). The joint near the end of the finger is called the distal IP joint (DIP joint). The thumb only has one IP joint between the two thumb phalanges. The IP joints of the digits also work like hinges when you bend and straighten your fingers and thumb."

- from http://www.activemotionphysio.ca/article.php?aid=280

The IP joint of my thumb is what has been subluxing (popping partway out of joint) and it HURTS! Thank you EDS :( I won't notice it's out until the pain starts in. Then I'll realize I've been using my left hand a bit too much. I carry a roll of medical tape around with me, and wrap the joint with it. Or sometimes if I don't have tape or wrap, I'll use a bandaid. Just wrapping it like that will calm it down and it will eventually pop back in. If it's especially bad I will run some Reiki over it to help it relax which also facilitates it popping back in.

Oh and when it's out it makes the most horrible crunching noises! Ick! I'm not sure what to do about this. I'd like to get some Silver Ring Splints someday for it, but I doubt a doctor would do that at this stage. It would be so comfy to wear the ring splint all day long so that the joint never slides out again.

You Feel Tired and Stupid. Do You Have Oprah's Thyroid Trouble?

This is a great article on thyroid probs:

Do You Have Oprah's Thyroid Trouble?

Adrenal Insufficiency part II

Several months ago I explained adrenal insufficiency and what it is. Basically the theory is, our modern lifestyles are so stressful that we tax our adrenal glands. The adrenals are supposed to produce hormones you need under stressful situations.

"The adrenals produce hormones that help to balance your blood sugar, which helps your body to manage your daily ebbs and flows of energy. When blood sugar drops, the adrenals release hormones that cause the blood sugar to rise, and increases energy. The adrenals also release hormones when we're under stress, releasing energy. It's the 'fight or flight' response from the days when we needed to run away from wild animals, which now kicks in for everyday stressors, such as traffic jams, arguments, and work pressures.

But being consistently under stress takes a toll on the adrenal glands, and eventually, they run out of steam, and stop producing sufficient hormones.

Conventional endocrinologists and tests cannot diagnose adrenal fatigue, because they are prepared only to diagnose extreme dysfunction in the adrenals, such as Addison's disease, a potentially fatal condition where the adrenals essentially shut down."
- from http://thyroid.about.com/cs/endocrinology/a/adrenalfatigue.htm

I've been doing a lot to help support the adrenals such as limiting stimulants and sugar. I've tried to exercise as much as I can, and tried to avoid stress. I've been taking a crapload of vitamins and minerals. However when the doc put me on the dumb synthetic thyroid I started feeling worse!!! I couldn't warm up - I had heating pads and heaters blowing on me and I was still shivering and had NO energy at all! Yesterday the cranio-sacral practitioner said my chest had a "tremor." "Yeah I think my whole body is in a tremor," I replied. She asked me if I exercise and I said yes, yoga 2x a week plus walking as much as I can. That kinda irritated me 'cause when they ask those questions I start thinking they're trying to blame ME for my odd body problems. Like "Oh if you'd walk 5 miles a day LIKE I DO you wouldn't have all the pain, the tremors, the spasms, the dislocations, etc." Don't I wish it was that easy?!

I joined the "Save Natural Thyroid" groups on Facebook and Yahoo Groups and I was getting some good info. from those guys. As I have still not found a doc to treat my thyroid naturally I decided to try one experiment. I found a great supplier of dessicated adrenal gland. They make dessicated thyroid gland too, but I wanted to try the adrenal first! Basically it's made of adrenal glands that are dried up and made into tablets. I only took one so far but WOW! I feel so much better! I'm not cold like I was yesterday, I have more energy, my heart isn't flopping in my chest, and just feel more alive!


They say that you don't need to take this dessicated adrenal forever, just long enough to help the adrenal glands repair themselves. So I'll see how I feel after the bottle is all used up. I heard of many people on the Save Natural Thyroid groups who felt better on a low dose natural thyroid AND low dose natural adrenal. So we shall see! :)

Free at last! Done with PT!

I am sooo glad that I'm now done with PT! Last week they re-measured my ROM and tested my strength. My strength wasn't too bad, and ROM was pretty good except when moving my arm out to the side (which I already knew). So, they said I'm free except that I need to do my exercises everyday. I'll be going to the doc again the first part of Nov. and will report back then - if I'm having any issues they can schedule more sessions.

This PT has been the best I've ever had. I've been to others where they push push push. Also they'll push you to have a gazillion appts. you can't afford. This place was very good not to push me and mindful of my insurance, so that I didin't use up all my coverage for the year. Thumbs up!

The only thing I'd complain about it they never let me do one of those relaxing ultrasound machines.

My arm feels pretty good as long as I don't overuse it. On Saturdays I tend to do that, and Sundays I feel for it. This past Sat. I pushed a shopping cart all of 2 aisles in the supermarket, then it got really sore. I guess I'm not ready to go shopping by myself yet! And also I cleaned the bathrooms and did some cooking. When I get into cook/clean mode I notice I tend to go into overdrive and then my arm hurts. I need to learn how to slow down and pace myself better.

Why do I care?

Yesterday, I felt really stange. Loopy, couldn't concentrate and just sort of "out there." It was partially because I had to take a Darvocet for my shoulder. I was getting pretty frustrated about this feeling because I truly am a smart person. I was valedictorian of my high school class and got teased about being a "braniac." So when my brain starts to not work it sort of scares me. My high intelligence was something I just sort of took for granted. In fact it was embarrassing sometimes. NOW I'm embarrassed for other reasons.

Then I ask myself "WHY DO I CARE?" what other people think of me? I really shouldn't. One of my co-workers came to me saying I left a candle burning 2 years ago. First of all, why wait so long to tell me? I told her, "My brain doesn't work too good sometimes." Then I also found out I made a typo on a newsletter I had done. I started to worry that maybe I was losing it. I felt like crying but didn't. The loopy feeling finally went away around lunchtime and I was able to go on with my normal self.

Maybe I need to start communicating to people more. They might not understand Chiari or EDS, but I could tell them about my fibro fog. Most people understand fibro, or at least have heard of it. I do sort of shut myself up into a little "shell" because I don't want people to freak out about all my issues. I try to act normal like nothing is wrong. Should I hide my pain and brain fuzzies? I'm still not sure on that one :( When I'm down, I cheer myself with funny pictures such as this one:

AHHHHHH all better ;)

Treating Low Blood Volume and Decreased Heart Function in CFS

I found Dr. Teitelbaum's website http://www.endfatigue.com/ and I have one word for it: AWESOME!!! It is packed full of so much great info. I took his free screening test and it came back:

ASSESSMENT
1. FatiguePain - Fibromyalgia by ACR Symptom Criteria
2. Probable Contributing or Associated Factors
Suboptimal Adrenal FunctionSuspected Hypothyroidism-(Commonly even seen with "normal" labs)Candida/Fungal overgrowthEstrogen Deficiency
3. Suspected Contributing or Associated Factors
Possible NMH (Neurally Mediated Hypotension)Chronic SinusitisInsomnia/Disordered sleepEssential Fatty acid deficiencyRule out Testosterone DeficiencyRule out bowel infections(Parasites, Clostridium Difficile, &/or Bacterial[SIBO])Low DHEA
Other Diagnosis/Information
Migraine Headaches(2002)

(This was just the very beginning of the report.) I was blown away at how accurate it was and how it confirmed a lot of my suspicions of what has been going on with me. He then listed a long report of vitamins, supplements and medications that might help. I have already done a lot of his recommendations so I know I'm on the right track! I might buy some of his supplements to see how I feel on them. I'm taking a lot of vitamins already but I'm sure there are some I'm missing!

Anyway his website is just a wealth of information. I found this article today:
Treating Low Blood Volume and Decreased Heart Function in CFS

Amazing! I do have low BP, and this totally makes sense. I somehow feel that the different parts of my body are not getting the oxygen and water they need. Then the pain and discomfort makes me breathe shallower, and it's a downward spiral. I feel the best after a yoga workout when I've gotten the oxygen to circulate to all areas.

The chicken and the egg

I've been thinking about this lately. Which came first, of all my health ailments? It's like the chicken and the egg. I can say which symptoms came first (first heart, then hormones, then headaches), but I can't say what problem existed first. They all seem to be intertwined and interrelated, mimicking the symptoms of each other. It's also confusing for me trying to decide which support groups to hang out in. Do I go to the fibro patients for advice? Or the EDSers? Or the Chiarians? The thyroid patients?

The more I think about it, I realize the EDS and Chiari I was probably born with but didn't know it. I seemed perfectly healthy until I hit puberty. Then the brain started getting more squashed leading to fibro and hormone issues. My bad diet and stress lumped more onto the problem until I was just a mess! I am just now trying to unravel it all.

The good part is, many of the problems can be helped with the same things. The things your doctor always told you: eat plenty of fruits and veggies, cut down on fats and sweets. Exercise everyday if possible and get enough sleep. Try to reduce stress in whatever way works for you. I had to totally revamp my lifestyle to start seeing the results. Some people don't believe me but eliminating processed foods made me feel 200% better! So if anyone is having problems that is the biggest advice I would give. Eliminate processed foods as much as possible. Eat things as close to their natural form as you can. Your body will then receive the nutrition it needs and you'll have more spring in your step :) Also try to cut down on the artificial chemicals you are exposed to.

I have been eliminating sugar gradually. At first I only ate raw sugar, honey and maple syrup. Now I'm cutting down on the sugar and maple syrup. I've also cut way down on dairy and white flour. Everyone is different and it will take you awhile to figure out what your triggers are. I didn't intend to become a health nut, that's just what happened! :) Now it's the organic free range chicken and its healthy egg.

Irritable Bowel Syndrome

OK, now on to everyone's favorite dinnertime conversation! Irritable Bowel Syndrome!

I have heard about this problem for years and didn't think much of it. A close family member has it also. All of a sudden it just occurred to me - I might be experiencing this as well. It could be my meds, or my diet or _____ (fill in the blank). Actually it sort of started when I began taking Lyrica. Now depending on how many meds I have taken, my bowels will be slow, then fast, then slow, then fast. . .

"What is Irritable Bowel Syndrome? IBS is a condition that affects the large intestine, commonly called the bowel. It is characterized by an extreme sensitivity to muscle contractions in the large intestine, which can cause symptoms including diarrhea and constipation. Like fibromyalgia, IBS is classified as a functional disorder because there is no clear structural or chemical cause for the condition.


IBS is thought to affect as many as 70% of fibromyalgia sufferers. It tends to affect women more than men, although large numbers of men, women, and children are all affected by the syndrome. Generally, women are three times more likely to develop IBS. People with both fibromyalgia and IBS tend to suffer from more severe symptoms than those with only one of the syndromes. If you have IBS and fibromyalgia symptoms, it is important that you find a treatment that can address both syndromes."
-from Fibromyalgia-Symptoms.org

http://www.fibromyalgia-symptoms.org/fibromyalgia_bowel.html

I did a little research and found that diet is one of the best treatments for this problem - eating enough fiber and avoiding stimulants like caffeine. I guess I'm already doing this! I avoid caffeine because of my heart conditions, but I do take Excedrin for my headaches which has 65 mg. of caffeine in it! (I'm trying to cut back on that though.) Also my digestive tract is very sensitive to stress. Any tiny amount of stress and my bowels freak out. Even if I try to TELL myself to not be stressed out, my "innards" don't care and freak out anyway. I really hope not to have to take meds for IBS, so I'm going to try to follow the diet guidelines.

It is a very embarrassing problem to have. On the flip side, my husband has always loved discussing ths topic (his family is very "open" about bodily functions) so at least I have one person to tell! Ha!!