More TOS ideas

I just decided my Thoracic Outlet Syndrome is the main cause of my headaches. To test this, this week I've been doing more of my exercises for TOS.

Amazingly my test is having great results! I've been doing the stretches on that site and found they offer pretty instant relief! And if a certain shoulder is really causing me pain I've been icing the thoracic outlet area and trying not to use that arm until it calms down. I haven't had a migraine in over a week! (for me, that is fantastic.)

I think the diet I'm on has been really helpful getting my body away from its hyperreactive state, into a more "calm" mode where I can observe certain things better. I'm trying to be more conscious about HOW I use my arms, what part is spasming and when then thoracic outlet area is tight. I'm having my regular massage today and I might float that idea past him.

Also I have to be more careful when I'm doing yoga, not to stress out that area.

Bug crawling sensation on skin - there's a name for it?!

"Formacation" (not to be confused with fornication)! :)

http://www.psychologytoday.com/blog/odd-curious-and-rare/200911/formication

I was experiencing this last night. My left shoulder was spasming and I started getting a weird little "twinge" in my scalp on the left side. Then it progressed to a larger twinge, and finally felt exactly like an ant was crawling on my head! I've had this before on the other shoulder. This article says it's odd, curious and rare but I know two other people who have this! My mom has it from her fibro, and my former massage therapist has it from a herniated disk in his back.

Strange, no?

Environmental Estrogens

I have told a few people (only those who would believe me) that I feel a lot better if I use only natural products on my skin and in the environment. I think I may have found a scientific explanation for that! I noticed since starting the progesterone cream I've been having some bloating and increase in headaches; several websites said that may show the presence of xenoestrogens.

http://www.energeticnutrition.com/vitalzym/xeno_phyto_estrogens.html

"Xeno literally means foreign, therefore xenoestrogens means foreign estrogens. Some of the 70,000 registered chemicals for use in the United States have hormonal effects in addition to toxic effects. The synergistic effects of exposure to many xenoestrogens are well documented, but largely unknown. These substances can increase the estrogen load in the body over time, and are difficult to detoxify through the liver. This further compounds the problem of estrogen dominance."

And here are some other links:
http://www.fibrocystic.com/xeno.htm
http://www.womhoo.com/index.asp?PageAction=Custom&ID=4

As of day 2 of a migraine that wouldn't leave, I was ready to abandon my progesterone cream treatment :( I went to research side effects thinking it was some weird reaction to the cream. Come to find out, it is ironically showing it is working but I need to cleanse some of the other xenoestrogens out of my body somehow. I already have estrogen dominance so I have to figure out how to decrease that!

The plot (or cream) thickens. . .

I've been learning many new details lately. I feel if I keep investigating, some day I will dig up some of the reasons WHY I feel so much like crud at times. Who knows, maybe I'll even help someone else feel better!

Factoid #1 - DAIRY PRODUCTS
Milk has been causing my sinuses to "stuff up" - so I've been avoiding it. However last weekend I was going to make some bean dip for my birthday party (assisting my mom to make food that is "safe" for me). We weren't at the grocery store we usually go to, so I couldn't get the imitation sour cream made from soybeans/tofu. I found some Horizon Organic Sour Cream and thought I'd give it a whirl. Amazingly - NO REACTION from the sinuses!

Factoid #2 - DAIRY PRODUCTS IN IRELAND
This is a story I heard but I do not doubt its truthfulness. An in-law of my sister's is currently living in Ireland. This in-law can't have dairy here in the U.S. but DAIRY IN IRELAND DOESN'T BOTHER HER! She believes this is because they don't use hormones and antibiotics in the milk products she finds in Ireland.

My mom was really impressed by this story because to her it might make some sense out of why I can't drink milk anymore.

Factoid #3 - MY GRANDMOTHER IS THE HEALTHIEST PERSON I KNOW
She is 83 and takes maybe two medications - the cheap kind! The rest can be cared for with an occasional aspirin or TUMS. Now I on the other hand just turned 35 and I'm on five medications, some of which are VERY expensive. Plus OTC meds and vitamins galore. I got to thinking to myself WHY is it that someone so much older can feel so much better? Hmmmm.

OK so I know I have EDS and Chiari - so my genetics are not as good as hers. But still. Then I started thinking about her life compared to mine. From what she has told me, she didn't have much junk food when she was growing up. Ice cream had to be eaten right after it was made because all they had were "ice boxes" - no freezers! Soda pop was a rare treat. There were no McDonalds or Pizza Huts back then. And they exercised a lot! She said once she went to a local lake (not a SMALL lake) and her friend and she decided to swim across the lake. Little did she know that there was no resting spot on the other side. They thought they'd swim across, rest for awhile on the other side and then swim back. Turns out the other side was full of slimy seaweed with nowhere to rest and she had to immediately swim back to the other side! She made it back! Personally I think I would've drowned.

So I thought about my grandparents and my husband's grandparents and I decided they probably had a lot healthier conditions back then. No overabundance of food, little "junk" food, no chemicals in their food. There was even less pollution in the water, ground and air! Instead of sitting around being bombarbed by electromagnetic waves from the T.V. set, they went outside for exercise and fresh air! They had other types of problems but they were not polluting their bodies with bad food and chemicals!

Fibromyalgia: A Brain Disorder?

I found this excellent article while researching neurotransmitters and fibromyalgia: http://aboutmecfs.org/Rsrch/FibromyalgiaICNS.aspx I was particularly interested in the part where it describes glutamate and magnesium affecting the pain levels being transmitted.

"The signal for muscle pain travels via two types of nerve fibers to the dorsal horn of the spinal cord, where it prompts them to release pro-pain substances such as substance P and calcitonin gene-related peptide (CGRP). Substance P is a sensitizer; when it is it released into the neurons of the spinal cord it makes their NMDA receptors hypersensitive to glutamate, when released into the tissues surrounding a wound it makes them more sensitive to stimuli.

NMDA receptor activation and the concomitant release of pro-pain substances such as substance P (SP), nerve growth factor (NGF), brain derived nerve factor (BDNF), and nitric oxide is believed to drive the process of central sensitization. A recent text stated that the ‘recruitment of the NMDA receptor appears to be the pivotal event in increasing the sensitivity of the nociceptive (pain) spinal circuits to (painful stimuli)'. This is believed to occur when repetitive pain stimuli knock the magnesium block off the NMDA receptors."

Very interesting and explains why MSG affects me so badly! If I eat it I do feel like my nerve cells are going haywire and firing too much. I'll continue to investigate this issue. . .

Feeling like a beat-up rag doll

My health issues totally kicked my ass this weekend :( I'm still trying to figure out why, but I'm not coming up with a good answer. My migraines sometimes make no logical sense. It's not like I can say "Never do 'X' or always do 'Y' and I'll never have another migraine again". Sometimes there is just no rhyme or reason to it and it's totally random!

Friday I got a massage with essential oils - which you would THINK would make me feel good. But perhaps because of all the stress from the doctor it had the opposite effect. . .

We got the movie "Little Miss Sunshine" from Netflix which was really good. But towards the end of the movie I started feeling a little "off." In the morning I woke up and felt that familiar tight pain in my neck and I knew it would be a bad day. I took some Excedrin and Flexeril and went about my day hoping it would pass but no - I finally had to take a Relpax which totally knocked me out. I thought OK now I'll rest a little and tomorrow's a new day! (That's the day the huge storm went through; although we missed it and only got 2" of snow, the pressure change was affecting me.)

Sunday morning - woke up with the same crunched-up feeling in my right shoulder and stabbing pain in the back of my head. I looked in the mirror and saw the thoracic outlet area of my right shoulder was swollen. I debated using my TENS while at church, then decided against it. I spent all church service holding my shoulder trying to get it to calm down. I couldn't speak properly and was kind of wobbly with my motor skills. Finally after lunch I admitted defeat and took another Relpax. This really pissed me off to have to take two Relpax two days in a row. I'm trying to take LESS medications, not MORE! I passed out on the couch for two hours and woke up feeling lots better. However when I tried to cook supper the pain started coming back. That's when I remembered the thoracic outlet was doing it, and I put some ice to the area while watching the Superbowl. Oh and it didn't help that my team lost!

Soooo this morning I feel like this ragdoll. Weekends are supposed to be relaxing and recharging but mine left me exhausted and sad! I'm trying to take it easy on BOTH arms now and trying not to stress about anything! Oh and another snowstorm is expected to come through on Tuesday - not looking forward to that.

Total waste of time

I HATE THIS!!! I went to the surgeon guy who supposedly knows thyroids. He poked around on my neck and then stood behind me with his hands on my throat and told me to swallow. I could not do it - it felt like I was choking! I just sat there trying and trying to swallow but unable to do anything. I told him I was having problems swallowing, so he gave me some water to drink while he felt my thyroid. Then he looked at all my labwork and reports and declared, "There is nothing wrong with your thyroid, it is perfectly normal."

OHHHHHH if I had a dollar for each doctor who has said, "There is nothing wrong with you, your (fill in the blank) is perfectly normal."

To add insult to injury he said, "If you want to suppress your thyroid with taking thyroid medications, that is up to you."

WHAAAAAAAT?!

All-in-all I would give this doctor visit an "F." He kind of brushed me off since I don't have a massive growth on my thyroid (the nodules are tiny). I admit that the swelling has gone down since I quit taking that nasty DIM supplement (which also smelled like rotting cabbage btw). He saw I was obviously having trouble swallowing and he didn't tell me what to do about it. Furthermore he insinuated that my attempts to treat my thyroid have been useless. I was insulted at his lack of understanding and listening skills. I just paid my co-pay and left rather depressed. At least I didn't burst into tears this time.

Now I just don't know what to do. I KNOW that I am just barely into the normal range on my labwork and the natural thyroid helps me have more energy, decreases the spasms, and just generally makes me feel more myself. I'm still not sure why my thyroid puffs up now and then. I need to research Chiari and swallowing issues.

D-Mannose

The naturopath lady told me to take this to prevent my chronic UTIs. I had been taking cranberry capusles but I wasn't sure they were doing any good. My last UTI was last August and I hope the D-Mannose will prevent any more in the future (knock on wood).

Here is an article explaining it: Natural Urinary Tract Health

"The cell wall of the UTI-causing E. coli bacteria has tiny finger-like projections that contain complex molecules called lectins on their surfaces. These lectins are cellular glue that binds the bacteria to the bladder wall so they cannot be readily rinsed out by urination. However, because D-mannose molecules will glom on to these lectins and fill up all of the bacterial anchoring sites, the bacteria can no longer attach to the bladder wall and are, therefore, flushed away. In other words, unlike antibiotics, D-mannose does not kill any bacteria, whether they are good or bad, but simply helps to displace them."

This stuff is rather expensive - $25 a bottle of 120 500-mg. pills. However I've been taking it since October, and I really have not had any more burning or UTI problems! This is a miracle! I can't even describe how terrible I feel when those bacteria take hold of my bladder. It's pure torture. Soooo I would give a big "thumbs up" for D-Mannose :)

Left shoulder weirdness

It seems that my left shoulder is starting to protest its extra use since my right shoulder was operated on. It's been making some very weird "popping" sensations. It feels like my scapula is moving in a very odd and strange direction. Last night as I was taking a shower I attempted to release the tension by stretching and it made a LOUD CLUNK, moved backwards and down and then my left hand felt like it was burning! This scared me a lot; I'm going to the thyroid doc on Thurs. and I really don't want to go in for my shoulder as well :( I tried not to use that arm much for the rest of the night - just rested and put ice on it.

This morning it doesn't hurt much but I'm still trying to be careful not to aggravate it.

I am getting more and more strange sensations in my hands. When my little kitten licks my hands I get a slight burning and numb feeling. Her tongue is rough like sandpaper but the feeling is dulled. I am guessing this is all from my thoracic outlet syndrome but I'm scared to look for a doc to treat it. From Wikipedia:

"It is known from pathological studies of cadavers, and from surgical studies of patients with TOS, that there are numerous anomalies of the scalene muscles and the other muscles that surround the arteries, veins and brachial plexus. TOS may result from these anomalies of the scalene muscles or from enlargement (hypertrophy) of the scalene muscles. One common cause of hypertrophy is trauma, as may occur in motor vehicle accidents.

The two groups of people most likely to develop TOS are those suffering neck injuries in motor vehicle accidents and those who use computers in non-ergonomic postures for extended periods of time. Young overhead athletes (such as swimmers, volleyball players and baseball pitchers) and musicians may also develop thoracic outlet syndrome, but significantly less frequently than the two large groups above."

Well I am in BOTH of those large groups!! Plus my instability from EDS doesn't help either. Sigh.