Monthly Archives: September 2010

Awesome Accidental findings…

Yes, as I’ve mentioned I’m overweight..have been for a few years now. Really really wishing I’d have gotten up off my lazy butt about 3 years ago before this damn Fibro kicked in and gotten rid of my extra 40 pounds. But I guess if we are wishing…I truly wish this Fibro would just go away. Wish in one hand..so the saying goes.

Anyway…I recently decided to try a colon flush, thinking maybe it would help with all of my stomach issues and I could get a grip on at least one things in this body of mine. So did lots of research and recruited my Wife to do it with me.

We went out and bought the Bentonite Clay and the Flax seed and the Acidophilus and we were ready to go! We started by eating only fruits and veggies..you really have no idea how hard it is to get creative with recipes when this is ALL you can have! But we did it. Week one down. 4 pounds lighter, SIGNIFICANTLY less pain and I haven’t had heartburn all week…UNHEARD of for me. I take antacid like candy!

Of course we slipped and got a bad craving for the delicious frozen yogurt across the street and just HAD to have it. An hour or so later, I thought I’d never get out of the bathroom! Ok so Milk, which I already had a strong feeling about, was part of my problems. No more frozen yogurt or milk for me! I woke the next morning to have a nasty headache and the ‘fullness,’ that I often try to describe to Dr’s but never can quite make it understood, in my head and massive mucus in the throat, nose, eyes, etc. DAMN THE MILK!

A few days later we slipped again and had some cheese….no stomach issues with the cheese (which makes no sense to me considering it’s made of milk, but what do I know?!) however the next morning I woke up with my famous ‘right temple dagger headache’ and since I had been pain free for the entire week without cheese I’m going to say that’s the culprit. I love cheese so very much. I’m so sad about the cheese. *sniffling*

Last night we splurged and went to Chili’s for a burger and fries..we both needed it very much and I have a potential job offer happening so I’m excited and we always celebrate with food and cocktails. It’s time to find a new way to celebrate!  I woke up with a lovely headache from my neck to my eyes, super incredible tender points everywhere! WHY OH WHY don’t I learn?! This one is to hard to poinpoint the exact food that caused my symptoms today…flour in the bun? probably…red meat? probably…cheese on the burger? Definitely….french fries? most likely.

It’s time to get creative with fruits and veggies and things that are all natural! I will continue to add ONE food at a time to see if it does anything major to my body, but you don’t know how great those 4 or 5 days felt with NO PAIN, no headaches, minor tender points and no fog. It’s so worth never eating junk food again, now if I can get that part of the brain that sends the cravings out to understand that, we will be good!

I HIGHLY suggest you try this…you don’t have to do the Bentonite and such..though I definitely suggest you google it and see the amazing benefits it offers! The ‘Elimination Diet’ that I ended up doing on accident has been a great eye opener! You have nothing to lose, but pain! (and maybe some pounds too!)

I’ve read everywhere…diet, diet, diet but it’s always paired with excercise so I always just think of the 2 together. This isn’t a DIET…it’s a way to figure out what may be causing the fibro flairs, the headaches, certain tender points, etc. I was and still am quite shocked by what I’ve found out the last few weeks and I’m sure I’ll be finding out alot more to come!


Before you Judge

This is not my own article but one I’ve gotten from FMS Community at

http://www.fmscommunity.org/lettertonormals.htm and felt it should be shared because it’s so true!

thinkbeforeyoujudgeThere are the things I would like you to understand before you judge me…

Please know that being sick doesn’t mean I’m not human. I may spend most of my day flat on my back and I might not seem like great company, but I’m still me stuck inside this body. I worry about school, work, family and friends and I’d still like to hear about yours.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable but it will pass. I’ve been sick for for so long that I can’t afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I’m happy, it does not mean that I am well. I may be in pain and sicker than ever.

Please, don’t say, “Oh, you’re sounding better!”.

I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes, doesn’t mean that I can stand ten minutes, or an hour. It’s likely that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move, but with Fibromyalgia it gets more confusing.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, and the next I’ll struggle to reach the kitchen.

Please don’t attack me when I’m ill by saying, “But you did it before!”.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct – if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.

If you read this and still want to suggest a cure, submit it in writing but don’t expect me to rush out and try it. If it is something new, with merit, I’ll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.

I depend on you – people who are not sick for many things but most importantly, I need you to understand me.

The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author and give credit to FMS Community and link back to the original site.  Thank You.


Hello world!

Well, I’ve been contemplating a blog for about a year…had no clue how to start until now, thanks to a friend. I’m not ‘technically challenged’ by any means, just didn’t figure any one wanted to read about my random thoughts! I really just wanted a place that I could post all of the information that I’ve collected/learned about FBS, IBS, CFS in the last 2 years. Hopefully someone like me, that googled it the minute I was diagnosed, will happen upon my blog and know that even though it really does stink, there may be some relief and of course..HOPE!

I think the 1st year was truly just a denial period for me. I refused to stop what I loved doing, I refused to acknowledge that I had to slow down and relearn to do some things. I wasn’t going to let this ‘invisible’ thing take over my life. Boy was I wrong. A year of your life is much longer when you are in pain and denial, but I may not be where I am now without that long year.


Winter

The winter came, I lived in Colorado at the time, and I was so miserable that I literally spent at least 1 month of the 3 winter months in my bed, crying, wishing for a new body, wishing for anything that could make the pain go away. I had to get on FMLA at work, I lost many hours and pay. My co-workers started treating me differently and whispering behind my back. People would make comments like ‘you look better today, that was a quick recovery from yesterday’ I didn’t explain, I couldn’t and I honestly didn’t feel I needed to but this definitely added to the stress factor. Winter was horrible; cold makes me shiver uncontrollably, inside..hard to explain, but it’s very uncomfortable and it makes every muscle in my body incredibly tight and sore. I wore 3 pairs of socks, long johns, 2 or 3 shirts, coats and gloves and scarves. Then the minute I got inside I had to strip it all off before the hot flashes started. It was the worst winter of my entire life. The rain, which I have always loved so very much, was also now my nemesis. I could tell if it was going to rain hours before it came down. My whole body felt swollen and painful and the headaches would be horrible.

We moved to Cali at the end of August 2009 after one of our many vacations here. My Wife, Son and I came out for a week. I felt great! I thought maybe it was just due to the lack of stress on vacations. We rode bikes for 2 hours, without significant pain and I didn’t hurt like hell the next day. I was in shock! and ever so happy! I couldn’t bear the thought of another winter in Colorado so we moved. It’s been an incredible adjustment since all of my family is back in Colorado, but health wise…I’m pretty much a new person…of course there’s more to it than the sun and no snow…but I’ll get into that later.


Meds

Over the next year she put me on Lyrica, which did nothing more than add an extra 25 pounds I certainly didn’t need.I think I tried 2 or 3 other antidepressants with no relief.

Increased my Amatryptelline, nothing.

I tried Oxycontin which took the edge off but also made me very nauseous. Roxycodone which did the same thing.

Vicodin, did nothing.

More muscle relaxers than I care to type about,which just made me sleepy and I couldn’t drive on them. Therefore, I couldn’t take while at work. Unhelpful

Xanax which definitely helped me relax and if I took enough of it, starting when I got up in the morning, it helped quite well, but again made me very sleepy and drugged to the point of not being able to concentrate very well. Hard to work that way!

Ultram, Valium, And the list goes on….I honestly don’t remember everything I tried. I was taking anywhere from 6-18 pills a day!

I had 2 trips to the ER because the pain was so bad that I couldn’t even lie in bed without significant pain, no lights, no sound due to the migraine – it was too much. I have an incredibly high pain tolerance and I couldn’t believe that I had to go to the ER for morphine, Dilaudid or anything else just to dull the pain for something that no one could see. It never ever went away, it only made it more bearable.

Now I’m a fairly cranky person to begin with, I really didn’t need annoying pain on top of it, but to add fuel to the fire I was no longer sleeping. Oh the frustration! Let’s throw a pill at it…Serequel. I was super happy to be sleeping but definitely NOT happy with the horrible new fibro fog I had acquired on top of the ‘hangover’ the Serequel left me in the morning.

I took myself off all meds after a foot surgery I had in the summer of 2009. I just couldn’t handle taking so many meds that seemed to do nothing for me. I found it pointless, expensive and more stressful than not.  I took Aleve as needed which at least dulled a headache, though it never did anything for tender points or any other ‘phantom pain’ I was having on any given day.

It’s time to try a more natural approach.


Diagnosis

February 2008 – Diagnosis

I had bronchitis (I’ve had asthma since I was a child and I get it 2 times a year without fail), had been to the Dr 2 times within a week for antibiotics, steroids, etc. She had put me on a new antibiotic and I thought I was having side effects to the drug. My thighs hurt so bad that I could barely sit in a chair and if I touched them, I felt like I would cry at any second. I googled the medication and found that it has side effects with muscle issues, so I assumed that was the problem.

My Dr took me off this medication and put me on something that I had used many times previously, but the pain persisted and seemed to spread over other areas of my body. I had no idea what was going on and I was actually scared, thinking the worst. I saw her again a week or so again later and she did some other tests…blood draws, etc. I guess I got lucky with this particular Dr because she actually knew about Fibromyalgia. I’ve read horror stories of people going years without a diagnosis…going to psychiatrists even, thinking it was all in their head. Anyway..I digress..she did some poking around on my body and promptly said “I’m pretty sure you have Fibromyalgia”  I had never even heard of it before this very moment. I just stared at her blankly as she began to explain. I don’t really recall much she said after than that, other than the fact that there was no cure and that I would always have pain and she would help me however she could to control the pain.

I had migraines and stress headaches for many years, had been to chiropractors and put on Amatryptilline for 4 years, I was told it was due to the fact that my shoulders and glutes were always tight. I had an incredibly stressful job,  I was getting older, I was a bit overweight, I thought the pain and headaches was all just part of that, so what…who doesn’t have all of these issues?! I thought wrong

I left the Dr’s office and called my Wife to tell her of my diagnosis, Fibromyalgia Syndrome. Neither of us knew anything about it..what do we do? What does this mean?

Google….sometimes it’s great and amazingly helpful, but sometimes it can be sensory overload and incredibly stressful! Two things I didn’t need at that moment. I sat in my office reading about Fibromyalgia with my mouth on the floor….how could this happen to me?