What's Going On? A Simple Explanation of Fibromyalgia

This Christmas even though it was less to DO (thanks to my conscious cutbacks and schedule), I still ended up feeling like crap. I found this cool article that explains:

What's Going On? A Simple Explanation of Fibromyalgia
Making Sense of a Complex Disorder, For Those Who Don't Have It

"Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't show, and instead of 20 guests, you get 100. You're overwhelmed.

That's what's happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.

When those pain signals reach the brain, they're processed by something called serotonin. People with fibromyalgia, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.

This is why people with fibromyalgia have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into very real pain."


I had some very real pain during our Christmas gathering. . .turns out there was nothing I could eat besides the spinach dip I brought, corn chips, one orange and some cheese cubes. Everyone scarfed down the dip and oranges and the cheese was too rich for my stomach. I think it was like this article - too many visitors coming to the party and I didn't have any friends to help! Everything just kind of attacked my brain - the food, the stress of getting things around, stress of facing family members you don't even LIKE, or who don't CARE that you're in pain and unable to eat anything, smelling 5 different strong-scented candles burning, the lights and flashbulbs, etc. etc etc. I had 2 migraines back-to-back after all that!

I was pretty depressed the next day. Add to it my doctors are taking their sweet time giving me the results of my ultrasound! I'm so nervous to hear about that! Will post with news as soon as I get it. Current mood: slightly improved :)

Merry Christmas to all!

My Christmas present was a thyroid ultrasound this morning at 9:00 a.m.! Whoooopie! Not to mention the layer of ice that covered all the roads so my hubby had to drive me to work and my appointment!

The ultrasound went pretty good - not the most pleasant feeling to have someone smash a metal thing into your swollen neck thereby giving you an even worse feeling of choking than you already have! But I managed to be still and not panic, and the test went well. Now we have to wait until Monday for the results. For some reason, the right side seems more swollen than the left today. I'm not sure if it's always like that or just a weird thing going on today.

I'm really hoping the ice melts so we can have church tonight. Our choir practiced for months and it would be a bummer to not perform those songs :(

In other ramblings, I was researching the DIM supplement I had been taking. Now that my thyroid is puffed up I don't think I should be taking it anymore!

"Di-Indole Methane

Di-Indole Methane is the direct metabolite of I3C (Indole-3-Carbinol) and twice as strong. This naturally occurring extract of the cabbage (cruciferous) family vegetables has proven effective in studies worldwide against hormonal related cancers. It's mechanism is to decrease high estrogen levels in both men and women, an issue which usually leads to cancer or other illnesses often associated with aging. Included are prostate disease, breast and uterine cancers, and weight gain. Supplementing the diet with DIM and eating cruciferous vegetables increases the specific aerobic metabolism for estrogen, multiplying the chance for so-called bad estrogen to be broken down into beneficial, or good estrogen metabolites. These good estrogen metabolites are known as the 2-hydroxy estrogens."
– from http://www.alternative-cancer.net/78_alternatives.htm


I remembered that cruciferous veggies should be eaten in MODERATION for those with low thyroid levels. Excess levels could cause worsening symptoms!!!

So, I guess no more DIM for me, but I do love cabbage, broccoli, brussels sprouts, you name it. I just have to not eat so much of it.

Merry Christmas to all - may you have some roasted turnip with your Christmas dinner!

Thyroid cancer

This was on the news last night:
http://www.msnbc.msn.com/id/21134540/vp/34516179#34516179

WEIRD that this was on TV the same day I was at the doctor for a similar problem! I hope this will NOT be the case with me, but scary that so many women my age are facing thyroid troubles :(

Thyroid ultrasound

My naturopath confirmed what I was afraid of on Friday - my thyroid is ENLARGED! She didn't really say what could have caused it. She said they'll try to schedule an ultrasound of my thryoid for sometime this week - the week of Christmas, yay! Just what I wanted to do for the holidays :-/

Also my little secret "stash" of Armour thyroid is now all gone! The pharmacy doesn't have any more and I'll now have to get a compounded thyroid from the compounding pharmacy. Read: EXPENSIVE pharmacy. Oh well. I don't really want to go back to Synthroid 'cause it makes my hair fall out!

Current mood: aggravated.

Swollen thyroid

I am sort of freaking out right now. This week I started getting a swollen feeling in my neck area. It feels like my throat is "tight" and I can't swallow. Also when I swallow it feels like things are getting stuck on the way down. Also, if I feel stressed it feels like it tightens up even more and I keep wanting to swallow constantly! I Googled how to examine the thryroid gland, and I checked it in the mirror and YEAH it's SWOLLEN and PUFFY :'( I don't know what is causing this; my thryoid labs came up normal! The naturopath did mention it was "thick" at my last appointment but it feels even worse now :'( I don't need this!!!!

I'm going back to see her again Monday because something is not right.

Massive rise in Celiac Disease blood tests, diagnosis

http://www.celiac.com/articles/21860/1/Massive-Rise-in-Celiac-Disease-Blood-Tests-Diagnosis/Page1.html

This is similar to what I experienced at my naturopath. They drew blood and were able to tell me I was sensitive to gluten!

I used to be really good at science and would've been able to explain different types of antibodies - unfortunately now a lot of my biology knowledge has escaped my brain! But I'll give a simplified overview the way I understand it. There are different types of antibodies which cause allergic reactions. The "igE" antibody is the one that instantly causes you to wheeze, swell up, itch, need a trip to the ER, etc. Those are the obvious allergies! The allergies I am having to food are the "delayed reaction" kind. igA or igG. Those allergic reactions are more subtle and can happen DAYS after the food is ingested. So you may have a general feeling of being unwell but not know why. That's why they do the blood tests - it's the only way to really know!

I don't have Celiac Disease, or maybe I just have the mild form of it. I DO have SENSITIVITY to gluten, which in my opinion would probably turn into something worse down the road! So, I'm glad I caught it relatively early so hopefully my body can heal.

It really stinks around the holidays because everyone around me is eating crap; I know they are not doing their bodies any favors but I have to just shut up and observe. Then after the parties they are sitting around groaning about feeling sick, "stuffed" and sleepy. While I feel just fine. But it does suck to not be able to enjoy the things they try to share with me.

High prevalence of Food Allergies in Patients with Ehlers-Danlos Syndrome

http://www.ashg.org/genetics/ashg07s/f21352.htm

"We found a high prevalence of food allergies in patients with EDS (14%) when compared with the general population (P<.0001). We also found a significantly higher incidence of gastrointestinal manifestations in our cohort when compared with the general population (P<.0001)."

Quite interesting - just what I am experiencing! I hope that someday EDS and Chiari and all its ramifications will be well-known. It seems common sense to ME, but the rest of the doctors haven't been educated yet!

Christmas

Everyone is getting ready for the holidays. This year I do have a very small amount of Christmas spirit! It has been hiding the past several years :( Last year I finally put my foot down and refused to make cookies! I figured I couldn't eat 'em so why make 'em? This year I went even futher; because of my shoulder surgery and my shoulder not being 100% yet, I am not making any homemade gifts this year. It was tough enough to get the tree and decorations up, and send out Christmas cards (I have some ideas on how to cut down on the Christmas card writing next year).

This year my son is making the cookies himself. He is 11 and starting to get interested in baking. I figured out how to use my KitchenAid to stir the batter, and he knows how to measure the ingredients and roll each dough ball in sprinkles and put it in the oven...

I'll probably make a small amount of some type of gluten-free, egg-free, and casein-free cookies just so I don't feel deprived. But the caramel corn, the candy, the 10 kinds of desserts. . . fugettaboutit.

I figure I'm getting to the HEART of what Christmas is all about - enjoying time with family. Who cares about the gazillions of cookies and all the hoopla? I can't enjoy my time if I'm running this way and that, doing this doing that, and making myself ill. Christmas Day we will enjoy a nice quiet day just the 3 of us; the next day we will spend with the in-laws.

I do suspect part of my stress during Christmases past was my needing to do "what is always done." As in "We always make 500 cookies, we always send out 100 cards, we always stay up until Midnight Christmas Eve," etc. I have to let go of that and make NEW memories for Christmas NOW and in the FUTURE! In the past when I didn't have migraines I could do all that stuff. Sure I'd be tired but it didn't impact me like it does now. Now, I need to save my energy for the really important stuff!

Syringomyelia (SM) and the King Charles Cocker Spaniel

Saw this on the news this morning:
http://www.cavalierhealth.org/syringomyelia.htm

This is what I have, except for the SM part (I only have the Chiari crowding, no SM). It says that upon diagnosis dogs will be euthanized?! Holy crap! No one has euthanized ME yet :) and also it was interesting to note that the disorder gets worse with each successive generation of dogs. This is something some of us EDSers/Chiarians have noticed among ourselves. I can identify with these poor little dogs.

IonCleanse® Therapy

OK here is another one of those wild and crazy therapies I like to try every now and then. Remember my motto is "I will try anything once." :P

I have heard of these foot baths where you put your feet in some clean saltwater and they put some kind of ion producing device in the water and toxins come out of your feet. Frankly I thought it was probably just another stupid way for people to make money! But my new massage therapist suggested I try it, and being curious I went for it!

I'm not trying to sell this therapy to anyone, I am just reporting my experience for those of you who are curious also. I was kind of skeptical, but curious. In my opinion it's good to have some healthy skepticism. When it turns into cynicism is when it goes bad, and it is especially harmful for those of us with chronic health conditions. When you're saddled with chronic pain plus cynicism, you feel like you are in a deep hole and will never get out - your cynicism prevents you from HOPE. I never want to get to that place again and I'm tickled to death when positive experiences come my way that shatter my skepticism!

OK so after my regular massage with essential oils, the massage professional put a pH strip in my mouth to test my pH balance. He said my level was very good - alkaline! So that affected what kind of setting he used for the IonCleanse®. Then, I put my feet in some warm saltwater and he put the electrode device into the water. It produced a tickly electrical sesation on my feet - that is all I felt. Soon the water began to turn a murky brown!

Now I have already heard the claims that this machine is a piece of garbage and that the water would turn murky even without feet in it. The guy told me that he has tested his without feet in it, and the water will turn CLEAR BROWN. So he looks for the murkiness, the white foam and the colors other than brown. When it was done (about 1/2 hr.) the water was a deep dark murky brown with a bit of white foam. He said the foam was from my lymph system (I had a few swollen lymph nodes), and the rest was just toxins. He said what was pulled out was not as bad as some people have. He then told me to drink a large glass of water before I left, and to drink a lot of water in the next 24 hrs. to flush the toxins out.

This is the really creepy part - the murky water smelled like an old dirty penny! And when I went #1 for the rest of the night (peeing out all the water I drank) - it smelled like plastic!!! So there was proof to me that something had happened. This morning when I woke up I noticed a tiny bit of plastic smell, not as much as last night and I noticed my skin breakouts had all dried up. I did a little research and found some articles on the IonCleanse®.

More about IonCleanse®
Evaluation of Heavy Metals In Relation to Ionic Foot Bath Sessions with IonCleanse®

Quite an interesting experience!

Interstitial Cystitis

Another thing my new doctor mentioned to me was interstitial cystitis.

"Interstitial cystitis (IC) is a condition consisting of pelvic pain, pressure, or discomfort related to the bladder, typically associated with urinary urgency or urinary frequency. IC may also be referred to as painful bladder syndrome (PBS).

IC can affect women, men, and children of any age or race, but it is most commonly found in women. Three to 8 million women in the United States may have IC. That is about 3 to 6 percent of all women in the US. Approximately 1.5 million men have IC as well; however, this estimate is likely below the true rate because IC in men may often be mistaken for another disorder, such as chronic prostatitis/chronic pelvic pain syndrome.

Many people with IC experience severe, chronic pain. Some feel like their insides are being cut apart with razor blades. Others compare the pain to red hot pokers stabbing at their pelvic area."
- from the Interstitial Cystitis Association http://www.ichelp.org/

I don't feel that my symptoms are anywhere near this, but I do notice pain in my bladder when I eat certain things or take certain medications. I also suffer from frequent UTIs. She recommended I take something called D-Mannose and also to drink aloe juice everyday. More research on D-Mannose later. . .

The aloe juice to me tastes yucky but - I tried not drinking it for a couple days and yeah the pain was back!

Diet update

Well, so far so good with the new diet! I am on a four-day food rotation cycle. The company Better Health USA gave me a print-out of my "safe" foods arranged in a rotation. But, I didn't really like the combos they gave me, so I made my own. It doesn't matter as long as you don't eat the same thing continuously day-to-day.

For example today I'm back to "day one" and I can eat rice, black beans, cheddar, garbanzo beans, green peppers and apples. I wanted this combo so I could do a bunch of Mexican flavored dishes!

Tomorrow is "day two" and I can eat chicken, potatoes, carrots, sunflower seeds, celery, melon, and grapes.

The eating plan is still a work in progress. I keep thinking of new things to add and taking things out that I really don't like. For example goat's milk is supposed to be safe for me, but my sinuses flared up bad when I used it in my buckwheat pancakes. Plus it tastes HORRIBLE to me. I'm very picky about animal products. I'm sure in no time at all I'll be a true vegan.

I had to give up eggs which is kind of problematic for me. I used to love making a nice pan of scrambled eggs for breakfast :'( But, with the buckwheat pancakes yesterday I substituted a banana in place of the egg - which tasted GREAT! Kind of helped cover up the goat milk, hee hee! Next time I will be using almond milk instead of goat milk!

I think I'm going through a candida die-off so I haven't felt too hot. I hope that will pass soon. Everyone tells me that you will feel like crud when the candida first dies off, but after that you should start feeling better.