Support :)

 My first post talks a bit about what it's like to have FM and how others do not know how to provide support. Many people don't know what it feels like to be in pain all of the time for no visible reason. One of my goals for this blog is to provide a sense of how to support  person who has fibro.

When a person with FM is "complaining" (as we are known to do often) about pain, it is not for attention. It is a call for help, for motivation and inspiration. If a woman has FM, she spends all day trying to motivate herself to move through the pain. Awful tension headache? Body fatigue? Pain pain pain? Too bad, she has things to do. Therefore,when a woman with fibro says to you something like, "I don't know why, but my body just really hurts today," she's probably looking for some sort of encouragement. First of all, she really doesn't know why. There is no injury. Second of all, it probably took A LOT of motivation for her to make it out of bed and through the morning ritual. Let her know, she's doing a great job. Especially if she's like me and the other fibro patients I know, she probably forces herself to go above and beyond her own and everyone else's expectations.

I like to remind myself that my nervous system is an asshole. A Neurological Study found that persons with FM compared to a controlled group with no pain "had more sensory findings than controls (65% vs. 25%; p<0.01) consisting of diverse abnormalities including pinprick, temperature, and vibratory sensation as well as analgesia/anesthesia." There are times when, out of nowhere, something will suddenly start to feel pain or feel like it's vibrating or just feel irritated. On a recent hike with my boyfriend, I started getting a random vibration and stinging sensation on my right foot on the outside of my big toe. It started as soon as we started walking. Really? It was extremely frustrating. I wanted to enjoy my hike and feel like "I can" and my body was trying to tell me something was wrong. Nothing was wrong. At the same time, my brain was telling me that a seam on the inside of my pants was bothering my skin...what? I just kept on, and eventually, thinking about other things helped.

The point is: If a FM patient winces, she/he is probably experiencing some random spark of pain. This is, once again, for no real reason. They are finding more and more that FM is a neurological disorder. One type of pain called allodynia is caused by mild pressure from clothing or massage. There's also paresthesias, a type of pain that comes from nerve sensations, similar to the feeling I explained above with my foot. Sometimes it's a strange throbbing, or a vibration, or an itch, sometimes, it feels like a stab. All of those random sensations and pains can be extremely frustrating. I find myself asking "WHY!?" a lot. It's like being poked constantly--lots of anxiety ensues. Here is another link that talks about the types of FM pain. 

The point of this post, though, is to highlight a recent message I received from a close friend who wanted to lend her support. I think she does a great job of empathizing while also motivating and pointing out that, considering the constant pain, I sure do a lot.
Here is her message:

"From what you were describing and taking from talks we've had previously it's a daily struggle for you to get what you need and want done, and that's really difficult to deal with. I don't know exactly what you're going through, but I've battled bouts of depression, OCD and anxiety since I was 15 and I have a feeling that the experience is similar; At first you think you're just being pathetic and that you just need to motivate yourself into being ok and productive but when you fail to do that even sometimes it feels like all the things you do right don't even matter. And once you find a medical name for what you're experiencing it's both a relief and a let down, because while you know you aren't the only one going through what you're going through it feels like something you should just be able to work through and everything should just fall in place. That's sort of the sense I was getting from your blog anyway, and it's certainly something I go through everyday. I'm sorry you're in pain and tired all the time, it sounds terrible. I just wanna offer you what little understanding I think I may have gathered and to let you know that you're inspiring. You do so much more than I do and you're listless and in pain while you're doing it, and I think that's amazing."

One more thing...

I'd like to add a link to an article about foods that may cause pain (chronic-pain causing foods ). I believe that these foods do cause more inflammation. I have more energy  and my body does not hurt as much when I avoid sugar, gluten, and dairy. I'm not a stickler about nightshades although I don't eat them often anyways. When Phillip and I have cheat days and munch on pasta smothered with cheese...I usually feel like crap shortly after. So, I do highly recommend diet change :) it seems like a lot of work, but eventually you just don't crave the things that make you feel like crap.

Vicious Cycles

So, the diet was going really well...

However, Phillip and I were having a very difficult time catching all the calories we needed. When you bike and train jiujitsu, the calories needed and expended are high. When you can't have carbs, it's challenging to catch up. I think that the elimination diet takes a lot of time, and serious dedication that we can't afford in our lives right now.

We found it helpful to cook chicken and sautee vegetables with quinoa or rice for dinner. But, when you train jiujitsu or work at night...it's challenging to make dinner. And when you rely on the co-op, you spend thirty dollars on lunch. I would eat, get to work, and be frustrated and starving. It seemed like the days I didn't eat enough were also the days I went home with awful headaches. They started at my shoulders and worked all the way to my temples. Basically, we had to add things back in because we just weren't eating enough.

However I did find that I felt better: less sluggish, more energy, (better sleep?). So we decided to make our own revised diet. We are continuing to cut many things but have also reintroduced a few things that we found necessary for nutrients. We added back in eggs. They are quick and packed with the protein we need. We added granola back into our breakfast smoothies so we have more complex carbs to help us later on. We are also less sticklers about the meat we eat, although I don't eat pork anyways. No dairy except for special treats. We don't mind if lime/lemon juice pops into our otherwise "clean" soup.

We discovered that we need to start cooking whenever possible. We love the way we feel without sugar and bulky carbs but we are allotting ourselves ONE cheat day a week for some of our favorites like pizza! Our relationship is built upon celebration. We celebrate every little tiny thing from being home together to training together. We celebrate Phillip's good grades and my writing escapades, we celebrate when we fight and when we make up. Food is part of celebration.

Next on the management list!

I have found anxiety to be the worst symptom. I get anxious for not accomplishing things and then I wouldn't accomplish things because I feel anxious. It's a vicious cycle.

Before I go to bed at night, I make a list of what I will do the next day. The list seems ridiculous when you look at it, because it's literally hour by hour what I will do, but it helps. I don't have those moments where there's so much to do that I don't know where to start.

I have been forcing myself to wake up on time in the mornings. This still means at least 9 hours of sleep, which I seem to need. I usually feel very stiff and my hands are weak and difficult to close. However, after a nice warm shower and a little bit of joint movement, I find that I can start to tackle my day.

Also, I try to pick something that inspires me to do for the half-hour it takes me to drink my smoothie. Sometimes it's reading, sometimes it's watching jiujitsu videos, sometimes it's writing. Whatever it is, it helps me stay motivated about my day.

In the middle of a lunch rush at work, I walked into the kitchen alley with a long list of "need to get" for my tables. Instead of rushing around, I walked with swag. Yeah, swagger, which just so happens to be a word used by Ken Kesey in "One Flew Over the Cuckoo's Nest," my current read. The people in the psych ward have things much worse. I don't need people who don't care about me to make my day worse. Now when a table is rude or needy, I just take a deep breath and calmly go about my business, instead of holding it all in and releasing my frustration on Phillip the minute I get home from work.

I'm doing my best to not let Fibro be an excuse. Every time something pops into my head like, "I'm in too much pain to..." or "I'm to exhausted to..." I remind myself to be strong. I will only hate myself if I sit around and do nothing. I am a writer and a bjj girl and a server and a girlfriend and a caregiver, I'm not a butt sitter.

Miserable!

Today and yesterday have been rough. I'm sure it's a combination of things like not eating a whole lot for the cleanse portion of the  elimination diet, having my period, and the weather getting cooler.

When I stopped at Phillip's school today to pass him a lab notebook, I just about broke down. I had a difficult time getting out of bed, slept 11 hours, still felt exhausted and hated myself for not getting anything done. I feel like I'll never accomplish the things I want to do because I don't have the energy, especially after work. Phillip suggested some schedule changes and told me I wasn't failing; "you're just feeling things out," he said. Phew. I told him I needed a sugar daddy so I could write all day. He laughed and I felt a little better for work.

As I may have mentioned before, I work at Olive Garden and it's just about the worst place to be during an elimination diet. The only things I can eat at work are water and grapes, and I'm surrounded by buttery and cheesy foods and the smell of garlic. Out of habit, I must admit, I did eat an Andes mint yesterday.

The weather here in Bellingham is just starting to get jacket cold and my body knows it. Today it felt like all of my ligaments were tightening to keep out the cold. Lifting trays and running back and forth for people only added to the stress. To top it off, hunger forced a wicked headache on me. Luckily I got out pretty early and took a couple of extra -strength tylenol and ate an apple. I then proceeded to clean the house and clean out my car. I didn't sleep! Yay!

When Phillip gets home and asks me what I want to do, I say, "eat a crepe." He says no, because that's his job.

Yesterday we tried a smoothie with pears, kale, and almond milk and it was pretty...interesting. Especially compared to what we're used to. One article says we cant eat anything but the smoothies for the first two days, while others suggest snacking as well. We're getting mixed information and basically feel anorexic compared to our usual intake. So, tonight I made a real meal all within the perameters. I re-heated our rice from Thai food the other night in chicken broth on the stove and added some steamed broccoli sauteed onion and organic free-range chicken all seasoned with Jane's Crazy Mixed Up Salt (best stuff ever) garlic and pepper.

Also, apple juice without any additives is my savior. I always have a sweet tooth. After a lunch of kidney beans and water I am pleased to eat. Hopefully the diet will get easier. I usually suck at sticking to things when I don't see immediate results (plus I love food), but at work I watch people who cant wait for delayed gratification all the time. They always waste soup, salad or their entrées because they're too full. We live in a consumerist culture. Our bodies are like credit cards. We just eat and eat hoping to pay it off later, but it just builds and builds and gets harder and harder to pay off. I hate that. So I'm still on the diet and determined to discover any foods that may irritate me.

I keep the hunger at bay with apples and nuts and a supportive man. I'll be able to eat more now that the smoothie phase is over. I've been using a rice heater pad at night to sooth my body into sleep, and I like to take baths and read when my body really hurts. There are fibromyalgia patients who pity themselves, and I refuse to be one of them. I'll keep moving pain and all. I just have to remember not to be too hard on myself.

Sometimes the most debilating thing is feeling overwhelmed: "Why am I in so much pain for no reason? Why are my eyelids so heavy? I just want to stay awake." So I'm even trying this new thing called "breathing." I know my body isn't degenerating. It's just telling me I'm in pain all the time when there's nothing really wrong. I try to remember that.

The Elimination Diet

Before writing in about the beginnings of my elimination diet, I want to give some credit to my significant other, Phillip, who at first, really didn't understand what I was going through. There were many points at which his worry about me turned into worry about himself and our future. I think, as a Fibro sufferer, that it's extremely important to think about how your pain may be affecting the people around you. Phillip brought to my attention that I tend to have a negative view about the whole situation and that it radiated throughout our lives. I understood what he was getting at, but I also made it a point to express how difficult it can be to stay positive when I'm in pain or am exhausted all the time. Fibromyalgia encompasses my entire body and causes mental, emotional and physical symptoms. It's even more difficult to stay positive when you feel like someone is judging you for your pain.

 It's so important to talk it through and give your partner ideas that will help him/her be supportive. If they haven't experienced your pain, they probably don't know what to say or do.

On that note, Phillip decided to do the Elimination Diet with me (his own idea), and I'm really going to need the support.

An elimination diet is a pretty basic concept. You cut out all of the foods that are known to irritate the human gastrointestinal tract: dairy, soy, gluten, red meat, pork, sugar, alcohol, additives. For the most part, we thought this wouldn't be too difficult for us as we already drink almond milk and rarely eat gluten or meat. Every morning Phillip makes a smoothie with spinach, blueberries, bananas, carrots eggs, and granola. We are a produce household for sure.

Still, we splurged on things we knew we wouldn't be able to eat for 3-4 weeks and quite possibly not be able to eat afterward either. Zeppoli donuts from The Olive Garden (my weakness), a cinnamon wheel from Papa Murphy's, Donuts from our local donut shop, Pho, Thai food...yum.

Then, on Sunday, the day before the beginning of the diet, we went grocery shopping. It was far more difficult than we thought it would be. We had to switch to an unsweetened almond milk, even the "original" had things we couldn't have in it. We couldn't get our granola so we bought puffed rice instead; it weighs as much as air. We stocked up on quinoa and flax seeds to supplement the produce. We had to purchase free-range chicken and free-range organic chicken broth (no veggie broth as it has tomatoes in it and tomatoes are a no no). We couldn't buy any canned tuna because ALL of them added soy for extra protein. We got cold-pressed olive oil and agave syrup to help season things. We even had to purchase all organic beans because other beans have sugar additives. Phillip got a $30 bag of nuts to help us with protein. Here's the grocery belt with our selection on it:

When we got home, Phillip insisted on hiding all of the food that we won't be able to eat for the next few weeks.

It seems a little crazy but it's a sure fire way to find out if foods are irritating you! Most of the time when I eat I feel more exhausted or extremely bloated, so I must be doing something wrong. Your GI tract houses 70% of your immune system so it's important to be good to it. Also, many foods can cause inflammation.

So this morning, Phillip was supposed to change our smoothie up to be a "Green Smoothie" courtesy of "The Whole Life Nutrition Kitchen" Blog for phase one of the diet. (http://www.nourishingmeals.com/search/label/green%20smoothies) Phase one is all about detox, getting all the bad out. Instead, Phillip just made a smoothie with acceptable ingredients. No big deal, we'll get it right tonight and tomorrow is a new day. 

I'm feeling good about this.

Please check out the links at the bottom of the page to read more about the elimination diet.

Tender Points

This photo, courtesy of WebMD, shows the tender points for a person diagnosed with fibromyalgia. These points hurt when poked, it's almost like a bruised feeling. While the tender points are small areas, literally like points, most fibro patients also have deep muscle pain all over their bodies.

When I was a child, I remember climbing up on to my mother's lap only to be re-situated because of the pain I was causing her. Now, there are definitely moments of play when my significant other will tickle me or poke me and I feel that same deep pain. Considering that I participate in a contact sport, I feel this pain every time I train. It makes continuing my passion very challenging, especially since in the world of BJJ, the attack points line up with my tender points (elbows, knees, neck, even back). Sometimes when I'm on the bottom of a position I feel completely helpless. This is not how I teach my women to feel and it is not how I want to feel. Brazilian Jiu Jitsu and my love for it is just another reason to manage the pain. I will work through this, even if I have to ice and heat every single night.

(http://www.webmd.com/fibromyalgia/guide/fibromyalgia-tender-points-trigger-points?page=2)

What Has Changed

I haven't felt normal since I was in high school. I don't get sicknesses like the cold or flu very often but I've always felt funny. My head has felt heavy and cloudy and my body has felt sluggish and tender for a very long time. Every doctor said I was healthy, tests looked great. I avoided going to the Rheumatologist for a couple of years because I had the suspicion that he/she would diagnose me with Fibromyalgia, and what would that mean? Would it mean I have been and will continue to be in pain for no perceived reason?

My symptoms include: Body fatigue, extreme morning stiffness, waking without feeling rested, sleepiness during the day, pain when touched in certain "tender spots" (one of the main symptoms observed for diagnosis), anxiety, irritable bowel, and headaches (I don't actually find that I experience Fibrofog, a feeling of forgetfulness or confusion, very often. Though I often have the "I can't think of the right word" issue. The Fibrofog usually comes about later as grey matter deteriorates in the brain. This happens more quickly in Fibro patients than the usual person). Sounds like a flu, but constant. It never goes away. Imagine feeling those things day in and day out, and just "sucking it up" because there's nothing else to do if you want to maintain your livelihood. The symptoms are so general and could apply to many different things, but I've been tested for everything and the tests say I'm healthy. Then why do I feel so awful?

There still seems to be a debate about whether Fibromyalgia is even real. It's difficult to believe a doctor when they have so little information about the disorder. The only way to diagnose Fibromyalgia is to rule out other possibilities (Thyroid problems, Arthritis etc.) and observe a patient's symptoms. Therefore, if I don't believe the doctor, it's like not believing myself or my symptoms. And if I don't believe me, who will?

I felt frustrated when someone said, "Just stay active." If "just staying active" was working, I wouldn't even have gone to the doctor. I often ride my bike to commute, I train Brazilian jiujitsu a minimum of three times a week with kettle bell pre-workouts, I don't have television, I am a waitress.
I am an extremely active person, and I eat very healthily (mostly produce, nothing processed). I go to bed around 10 and wake up at 7.  Nothing about my life suggests that I should be feeling so poorly.

I mentioned to my partner that a friend had said, "Feel better soon!!" in response to my diagnosis. I told him that it frustrated me, but I didn't really understand why. It was as if I just had a simple cold and a little bit of medicine would take care of it. He then got frustrated with me, said I was always negative and that I just wanted sympathy, and that he couldn't handle it.

No. I don't want sympathy. I want support. It's not just a cold or a flu. It's a battle. Medicine is not a fix. I realize that people don't understand what fibromyalgia is; anyone diagnosed with it realizes that no one understands it. Therefore, I understand that people don't know what to say or do, and I think that's what's really frustrating me. Just like anyone battling a disease or disorder, I don't want sympathy, I want people to say: "You can do it!" or "Have you tried..?" or "Keep working hard!" And no, it's not a fatal disorder, maybe I'm not dying, but I could easily lie down and do nothing. I'm begging myself constantly to just lie down.

And now, I finally have an answer to why I've been feeling crappy all the time, and it's not even an answer, it's just the last available possibility, and there's no cure. I feel overwhelmed by the mental battle: Is it real? Is it in my head? Why am I so frustrated?   Even my mother, also diagnosed, doesn't want to believe she has fibromyalgia. Despite the catch-all, she insists: there must be something else wrong.

The only option for my livelihood is pain management. I need to tweak my lifestyle until it works, despite the fact that I already live a healthy lifestyle. I have a couple of things on my list: I will be doing a sleep study, as restless sleep causes stress on the body and is linked with fibro; I will be starting an elimination diet to rid foods that stress my digestive system. I'm not lazy, crazy or ridiculous; I am an inspired person. I want to be good at my sport (BJJ), I want to write novels, I want to be a good partner who is positive about life, I want to stay awake and keep moving. All of these things are made difficult by fibromyalgia. The fibrofog must be broken up.

No matter what goes through my head or other peoples' heads-- these symptoms, they're real.


Please check out the links/polls at the bottom of the page.