It's disheartening how often I hear those words. "I want my life back!" I've covered my views often on this blog and on loops and groups I'm in. There isn't a 100%. But 98% is obtainable.
I've talked on and on about vitamins and eating better and exercising and while I'm positive those things help, the first move is far more complex.
It comes down to belief.
Whether you want to call it mind-over-matter, spiritual confidence, or divine inspiration, one thing is for certain. We have to convince ourselves we can get better.
In a lot of different studies and tests you see the medicine pitted against placebo and some of the results are quite close. That tells us quite a bit about the human race. We can "talk" ourselves into anything.
I'm not suggesting we can cure ourselves by hypnotizing our minds into believing our bodies are healthy. They're not. We know this because we can feel it.
But I don't believe we're at a disadvantage knowing what we know. Instead of worrying over what every little pain is. We know! It's Fibro and its here to stay. So wince with the pain but keep on walking! Don't let it stress you. This isn't something you haven't felt. This too will pass! That knowledge...gives us power! Just like when we first found out about our Fibro.
At first, a lot of Fibromyalgia patients are relieved to know they actually *have* something and they're not crazy. But that feeling usually melts into the pool of self pity once the knowledge that there is no cure overwhelms us. Depression follows and we start noticing more symptoms, more pain, more fatigue.
Fibro is dictated by stress and (I know we all don't want to hear it...) laziness. The more we let the diagnosis get us down and the more we lay in bed to nurse every little pain...the worse it gets. It stops being "little pain" and graduates to big daddy pain. Once it gets to that stage our body gives up and our mind follows shortly.
We have to get out of that rut! We have to make ourselves work every day! Nonstop! Towards the goal of decent health so that we can TAKE our life back.
Some of us are so far down the thought of even rolling out of bed and lifting a leg in attempt to exercise seems ludicrous. It isn't my friends.
I'm a perfect example of what can happen when you get ANGRY and you push Fibro back!
I went from 110 lbs to 160 lbs. I laid in bed every day. Barely did a thing. I moved from my bedroom to a chair in my living room and sat there and played games to get my mind off of the pain. I felt sorry for myself. Used narcotics often enough to have black spots in my memory. I took so many meds I had to go to the hospital every time I got a migraine because nothing helped any more. I gave up!
I told you the story of my daughter, and that incident coupled with a failed marriage and a will to overcome and live my life again inspired me to start the fight.
It didn't happen right away. It happened for a week.. and then I crashed... and then I tried again and that lasted two weeks. Etc. Finally, I realized its like kicking a drug habit. Shaking off the Fibro Life to get back to a normal one is possible, if we don't stop forcing it. What do we have to lose? What's the worse that can happen by pushing ourselves to the brink?
We'll hurt ourselves? That's possible, (probable considering the exercise) but we're already hurting just doing nothing. YOU decide when you hurt and why. You can get better control on your condition, all you need to do is believe it and make it happen.
I have faith in you,
Gin
**Disclaimers on all typos. lol
Saturday, February 28, 2009
Thursday, February 26, 2009
Fibro and Sinus Issues
Post Nasal Drip is a common symptom of Fibromyalgia, but why?
Fibro increases allergies and the reactions we have to mold and yeast. Yippy!
So what is the function of our sinuses and why do they make us drip out our nose or down our throat constantly? Well I did a bit of research. ( A few days worth!) I found out that no one seems to know what Sinuses actually *do*. How awesome is that? LOL
What I did find interesting is Sinusitis, a condition that can match Fibro for symptoms. I've heard it said by some doctors that Fibro is just a really bad sinus infection. .... uh huh. "A blocked sinus can cause major migraines, bad breath, and chronic fatigue." Well what about muscle aches and pains? "Chronic Fatigue can atrophy the body." .....uh huh.
I read the report of this guy and rolled my eyes through most of it. Of course in all fairness I only understood a tiny bit of what he was saying. Medical Jargon can smack me around sometimes... I usually print it out and seek out one of my doctors like a kid learning to read in kindergarden.
Okay, back to the point. I may think that these Sinus Theory doctors are wrong about most of what they say but there could be something to the Sinus Theory. So I checked it out and I'm bringing you some quotes from my findings.
About Sinus Function: (Taken from yourtotalhealth.ivillage.com)
The sinuses are hollow spaces located in the face and skull. They appear in pairs on either side of the face. Depending on the type, the sinuses vary in size from tiny to the size of a walnut. The four sets of sinuses are:
Frontal sinuses. Located in the forehead. There are two of these sinuses, one per side of the forehead. The frontal sinuses vary greatly from person to person in both size and shape.
Maxillary sinuses. Located in the cheeks between the teeth and the eyes. There are two of these sinuses, one in each cheek. These are the largest of the sinuses, and each can be roughly as large as a walnut.
Ethmoid sinuses. Located on each side of the nose between the eyes. There are between 6 and 12 of these sinuses on each side of the face. These sinuses are very small.
Sphenoid sinuses. Located deep behind the eyes, towards the middle of the skull. There are two of these sinuses, one per side. The size, shape and volume of these sinuses vary greatly from person to person.
The function of the sinuses is not entirely understood. (Yup...read that just about everywhere!)Most physicians agree that the sinuses are useful for reducing the weight of the skull while preserving bone strength and shape. The shape of the sinuses and nasal cavity also serve to add resonance to the voice. In addition, sinus cavities may help reduce the damage sustained during a head trauma by absorbing some of the impact.
Like the nasal cavity, the sinuses are lined with mucous membranes – moist layers of tissue that secrete mucus. This mucus helps remove foreign particles that enter the sinuses. The sinuses also have cilia, tiny hairs which push the mucus back into the nasal cavity through small openings (ostia). This drainage is not based on gravity, but rather the efforts of the cilia. From the nasal cavity, the mucus can be removed from the body through either the nose, throat or mouth.
The ostia are very small, and can easily become blocked, preventing the normal drainage of mucus from the sinuses. This often occurs due to the inflammation produced by a cold or allergy (an exaggerated reaction of the immune system to certain foreign invaders that it mistakes as a threat to the body), excessive mucus production or growths such as polyps (bulging growths that develop in the lining of mucous membranes). After the ostia are blocked, inflammation or an infection can occur in the sinuses. This condition is called sinusitis. The air trapped in the sinuses during this condition can cause painful facial pressure, headaches or toothaches.
Okay...so now we know why the Sinuses are naughty. What about Sinusitis?
Taken from WebMD
Who Gets Sinusitis?
About 37 million Americans suffer from at least one episode of sinusitis each year. People who have the following conditions have a higher risk of sinusitis:
Nasal mucous membrane swelling as from a common cold
Blockage of drainage ducts
Structure differences that narrow the drainage ducts
Conditions that result in an increased risk of infection such as immune deficiencies or taking medications that suppress the immune system.
In children, common environmental factors that contribute to sinusitis include allergies, illness from other children at day care or school, pacifiers, bottle drinking while lying on one's back, and smoke in the environment.
In adults, the contributing factors are most frequently infections and smoking.
What Are the Signs and Symptoms of Acute Sinusitis?
The primary symptoms of acute sinusitis include:
Facial pain/pressure
Nasal stuffiness
Nasal discharge
Loss of smell
Cough/congestion
Additional symptoms may include:
Fever
Bad breath
Fatigue
Dental pain
Acute sinusitis may be diagnosed when a person has two or more symptoms and/or the presence of thick, green or yellow nasal discharge.
What Are the Signs and Symptoms of Chronic Sinusitis?
People with chronic sinusitis may have the following symptoms for 8 weeks or more:
Facial congestion/fullness
A nasal obstruction/blockage
Pus in the nasal cavity
Fever
Nasal discharge/discolored postnasal drainage
Additional symptoms may include:
Headaches
Bad breath
Fatigue
Dental pain
Yikes, huh? I get pretty bad allergies so I'm checking more and more into this as a reason for "really bad days".
I had the bad breath bit but started to use a saline nose wash nightly before bed. After a week my breath was back to normal. If you have bad breath, however, this isn't necessarily indicative of sinus troubles, it could be something more along the lines of liver damage. Especially if you take too much ibuprofen or acetaminophen. Our livers are pretty regenerative though...so don't panic, just take NSAIDS and acetaminophen and aspirin out of your daily pill intake for a bit. (Consult your doctors first!)
Other than the saline nose wash I use, I've seen saline drops recommended as well as vaporized steam.
The first step of course is to get the diagnosis from your doctor...but a saline wash never hurt anyone.
Hope this helps! Be well my friends.
Fibro increases allergies and the reactions we have to mold and yeast. Yippy!
So what is the function of our sinuses and why do they make us drip out our nose or down our throat constantly? Well I did a bit of research. ( A few days worth!) I found out that no one seems to know what Sinuses actually *do*. How awesome is that? LOL
What I did find interesting is Sinusitis, a condition that can match Fibro for symptoms. I've heard it said by some doctors that Fibro is just a really bad sinus infection. .... uh huh. "A blocked sinus can cause major migraines, bad breath, and chronic fatigue." Well what about muscle aches and pains? "Chronic Fatigue can atrophy the body." .....uh huh.
I read the report of this guy and rolled my eyes through most of it. Of course in all fairness I only understood a tiny bit of what he was saying. Medical Jargon can smack me around sometimes... I usually print it out and seek out one of my doctors like a kid learning to read in kindergarden.
Okay, back to the point. I may think that these Sinus Theory doctors are wrong about most of what they say but there could be something to the Sinus Theory. So I checked it out and I'm bringing you some quotes from my findings.
About Sinus Function: (Taken from yourtotalhealth.ivillage.com)
The sinuses are hollow spaces located in the face and skull. They appear in pairs on either side of the face. Depending on the type, the sinuses vary in size from tiny to the size of a walnut. The four sets of sinuses are:
Frontal sinuses. Located in the forehead. There are two of these sinuses, one per side of the forehead. The frontal sinuses vary greatly from person to person in both size and shape.
Maxillary sinuses. Located in the cheeks between the teeth and the eyes. There are two of these sinuses, one in each cheek. These are the largest of the sinuses, and each can be roughly as large as a walnut.
Ethmoid sinuses. Located on each side of the nose between the eyes. There are between 6 and 12 of these sinuses on each side of the face. These sinuses are very small.
Sphenoid sinuses. Located deep behind the eyes, towards the middle of the skull. There are two of these sinuses, one per side. The size, shape and volume of these sinuses vary greatly from person to person.
The function of the sinuses is not entirely understood. (Yup...read that just about everywhere!)Most physicians agree that the sinuses are useful for reducing the weight of the skull while preserving bone strength and shape. The shape of the sinuses and nasal cavity also serve to add resonance to the voice. In addition, sinus cavities may help reduce the damage sustained during a head trauma by absorbing some of the impact.
Like the nasal cavity, the sinuses are lined with mucous membranes – moist layers of tissue that secrete mucus. This mucus helps remove foreign particles that enter the sinuses. The sinuses also have cilia, tiny hairs which push the mucus back into the nasal cavity through small openings (ostia). This drainage is not based on gravity, but rather the efforts of the cilia. From the nasal cavity, the mucus can be removed from the body through either the nose, throat or mouth.
The ostia are very small, and can easily become blocked, preventing the normal drainage of mucus from the sinuses. This often occurs due to the inflammation produced by a cold or allergy (an exaggerated reaction of the immune system to certain foreign invaders that it mistakes as a threat to the body), excessive mucus production or growths such as polyps (bulging growths that develop in the lining of mucous membranes). After the ostia are blocked, inflammation or an infection can occur in the sinuses. This condition is called sinusitis. The air trapped in the sinuses during this condition can cause painful facial pressure, headaches or toothaches.
Okay...so now we know why the Sinuses are naughty. What about Sinusitis?
Taken from WebMD
Who Gets Sinusitis?
About 37 million Americans suffer from at least one episode of sinusitis each year. People who have the following conditions have a higher risk of sinusitis:
Nasal mucous membrane swelling as from a common cold
Blockage of drainage ducts
Structure differences that narrow the drainage ducts
Conditions that result in an increased risk of infection such as immune deficiencies or taking medications that suppress the immune system.
In children, common environmental factors that contribute to sinusitis include allergies, illness from other children at day care or school, pacifiers, bottle drinking while lying on one's back, and smoke in the environment.
In adults, the contributing factors are most frequently infections and smoking.
What Are the Signs and Symptoms of Acute Sinusitis?
The primary symptoms of acute sinusitis include:
Facial pain/pressure
Nasal stuffiness
Nasal discharge
Loss of smell
Cough/congestion
Additional symptoms may include:
Fever
Bad breath
Fatigue
Dental pain
Acute sinusitis may be diagnosed when a person has two or more symptoms and/or the presence of thick, green or yellow nasal discharge.
What Are the Signs and Symptoms of Chronic Sinusitis?
People with chronic sinusitis may have the following symptoms for 8 weeks or more:
Facial congestion/fullness
A nasal obstruction/blockage
Pus in the nasal cavity
Fever
Nasal discharge/discolored postnasal drainage
Additional symptoms may include:
Headaches
Bad breath
Fatigue
Dental pain
Yikes, huh? I get pretty bad allergies so I'm checking more and more into this as a reason for "really bad days".
I had the bad breath bit but started to use a saline nose wash nightly before bed. After a week my breath was back to normal. If you have bad breath, however, this isn't necessarily indicative of sinus troubles, it could be something more along the lines of liver damage. Especially if you take too much ibuprofen or acetaminophen. Our livers are pretty regenerative though...so don't panic, just take NSAIDS and acetaminophen and aspirin out of your daily pill intake for a bit. (Consult your doctors first!)
Other than the saline nose wash I use, I've seen saline drops recommended as well as vaporized steam.
The first step of course is to get the diagnosis from your doctor...but a saline wash never hurt anyone.
Hope this helps! Be well my friends.
Wednesday, February 25, 2009
With A Grain Of Salt
Hello friends!
I apologize for skipping out for a few days. I had a bit of a migraine and then a spot of good news! I feel it was an even trade. A book of mine is getting published! Hurray! Good things can happen with a lot of hard work.
Especially feeling Fibro Free!
Today's topic is touching on a subject I previously posted about titled The Dangers of Support Groups. I talked all about the negativity and the impact those pages can have on the positive Fibro Fighters.
Part of the reason for a lot of negativity is that many people who have Fibromyalgia have other conditions that make their Fibro more painful. I don't have statistics with me but I would say over half of Fibro Sufferers have a secondary condition. I refer to these Sufferers as Fibro Plus.
I am a Fibro Plus sufferer and because of this, I know how difficult it can be to keep your secondary conditions separate from "classic" Fibromyalgia. You hear us rattle off all the things that we have on appropriate threads but for the most part, when we answer a specific symptom question or talk about our pain levels and our mobility capabilities, you don't hear anything about those extra conditions we suffer from which might be causing these excessive cases.
Thus, the confusion begins.
When looking through this blog you will find a monster list of symptoms that are/can be Fibromyalgia related. But how many other conditions out there can have these symptoms? How many are linked to common, short-lived, illnesses. One of the Fibro symptoms listed is post nasal drip which I have. It's annoying! It's also a side effect of having allergies or the common cold.
These lists aren't made to freak out about but soothe. "Don't know why you're having post nasal drip all the time? Well according to the monster list, it *could* be Fibromyalgia." That's the way you have to think about it.
Now, back to my original point...
Fibro Plus Sufferers (those with more than just Fibro) will comment on a symptom thread, and will bring unnecessary panic to those who have basic Fibromyalgia. For Example.
Fibro Sufferer 1: "I have sharp pains in my breast, anyone have this?"
Fibro Plus Sufferer: "I have had pains in my breast for 15 years. My doctor finally found a swollen milk duct and then a lump beneath that. The biopsy showed that it could be cancerous so I had surgery and am hoping I will recover well."
Yikes. The Fibro Sufferer just wanted to know about breast pain, which can be one of several Fibro symptoms. (Fibrocystic breasts, or even just extreme PMS which we can all suffer from. It is one of the reasons why magnesium is so important.) Instead of getting a "good" answer, Fibro Sufferer 1 got too much information. The Fibro Plus Sufferer just caused undo stress and gave an improper diagnosis because he/she was more intent upon sharing their own pain story than giving, what I call, TRUE FIBRO ADVICE.
Now, to clarify, there is nothing wrong with saying something like.. "The most common reason for breast pain for Fibro Sufferers is Fibrocystic breasts and extreme PMS, however mine was due to ."
It's all in how we word things.
I get really angry when I see people respond incorrectly because I remember when I first had Fibro and didn't understand much about it, I would read responses sent to me and freak out. "OMG I'm going to develop MS? Cancer? RA? I'm going to get so bad I'm going to be wheelchair bound?"
Then I realized after extensive research and study what I'm now telling you.
Most Fibromyalgia Sufferers (All sufferers from Classic to Plus)....have no idea what they're talking about. (Come on! We all have to swallow our pride and admit we are not 100% sure of anything except that we hurt!)
Fibro is so different for everyone! Also...Fibro Plus sufferers are NOT a good source of information unless they are able to differentiate their Fibro from their other conditions. (This applies to me too from time to time, though I do often refer to the common symptom list before responding to anyone with advice.) For example: When someone asks me about pelvic pain its hard for me to respond accurately because I suffer from IBS.
Please, my friends, remain positive and take the advice you hear with a grain of salt! Even that which comes from my mouth. The only thing I want any of my readers to believe is that anything is possible, including feeling fantastic!
All my best and hopes for health!
I apologize for skipping out for a few days. I had a bit of a migraine and then a spot of good news! I feel it was an even trade. A book of mine is getting published! Hurray! Good things can happen with a lot of hard work.
Especially feeling Fibro Free!
Today's topic is touching on a subject I previously posted about titled The Dangers of Support Groups. I talked all about the negativity and the impact those pages can have on the positive Fibro Fighters.
Part of the reason for a lot of negativity is that many people who have Fibromyalgia have other conditions that make their Fibro more painful. I don't have statistics with me but I would say over half of Fibro Sufferers have a secondary condition. I refer to these Sufferers as Fibro Plus.
I am a Fibro Plus sufferer and because of this, I know how difficult it can be to keep your secondary conditions separate from "classic" Fibromyalgia. You hear us rattle off all the things that we have on appropriate threads but for the most part, when we answer a specific symptom question or talk about our pain levels and our mobility capabilities, you don't hear anything about those extra conditions we suffer from which might be causing these excessive cases.
Thus, the confusion begins.
When looking through this blog you will find a monster list of symptoms that are/can be Fibromyalgia related. But how many other conditions out there can have these symptoms? How many are linked to common, short-lived, illnesses. One of the Fibro symptoms listed is post nasal drip which I have. It's annoying! It's also a side effect of having allergies or the common cold.
These lists aren't made to freak out about but soothe. "Don't know why you're having post nasal drip all the time? Well according to the monster list, it *could* be Fibromyalgia." That's the way you have to think about it.
Now, back to my original point...
Fibro Plus Sufferers (those with more than just Fibro) will comment on a symptom thread, and will bring unnecessary panic to those who have basic Fibromyalgia. For Example.
Fibro Sufferer 1: "I have sharp pains in my breast, anyone have this?"
Fibro Plus Sufferer: "I have had pains in my breast for 15 years. My doctor finally found a swollen milk duct and then a lump beneath that. The biopsy showed that it could be cancerous so I had surgery and am hoping I will recover well."
Yikes. The Fibro Sufferer just wanted to know about breast pain, which can be one of several Fibro symptoms. (Fibrocystic breasts, or even just extreme PMS which we can all suffer from. It is one of the reasons why magnesium is so important.) Instead of getting a "good" answer, Fibro Sufferer 1 got too much information. The Fibro Plus Sufferer just caused undo stress and gave an improper diagnosis because he/she was more intent upon sharing their own pain story than giving, what I call, TRUE FIBRO ADVICE.
Now, to clarify, there is nothing wrong with saying something like.. "T
It's all in how we word things.
I get really angry when I see people respond incorrectly because I remember when I first had Fibro and didn't understand much about it, I would read responses sent to me and freak out. "OMG I'm going to develop MS? Cancer? RA? I'm going to get so bad I'm going to be wheelchair bound?"
Then I realized after extensive research and study what I'm now telling you.
Most Fibromyalgia Sufferers (All sufferers from Classic to Plus)....have no idea what they're talking about. (Come on! We all have to swallow our pride and admit we are not 100% sure of anything except that we hurt!)
Fibro is so different for everyone! Also...Fibro Plus sufferers are NOT a good source of information unless they are able to differentiate their Fibro from their other conditions. (This applies to me too from time to time, though I do often refer to the common symptom list before responding to anyone with advice.) For example: When someone asks me about pelvic pain its hard for me to respond accurately because I suffer from IBS.
Please, my friends, remain positive and take the advice you hear with a grain of salt! Even that which comes from my mouth. The only thing I want any of my readers to believe is that anything is possible, including feeling fantastic!
All my best and hopes for health!
Saturday, February 21, 2009
The Targets On Our Backs
In the wild, whenever there is an injured animal, the predator sweeps in on the prey.
In the ill-health community it is no different.
It doesn't matter what you are afflicted with, chances are, there is someone out there who will swear they can cure you or cure you faster than what is sanctioned by the medical professionals.
Now, to be fair, not every supplement company out there can afford to pay the FDA the millions upon millions of dollars that are needed to run tests or studies that would validate their vitamin or their "cure". But as patients we have to ask ourselves why that is.
If something has been out there for a while, and still hasn't received the funding...well you have to use your best judgement. For me, I think of a vitamin that claims to help the heart, immune system, or whatever the claim is and I see the little Astrix that says "claim not FDA approved" and it doesn't bother me.
Vitamins are helpful, we all know that and so do the doctors. They tell us to take them so why would anyone need to spend millions of dollars to validate them? It would be nice though wouldn't it? We could all feel secure that we're not crazy. That vitamins really do what they say they do.
But it isn't vitamins that bothers me so much as supplement, holistic, homeopathic, and straight out bizarre cures. These are the ones that are targeted towards the sick in hopes of selling a product that 90% of the time doesn't do all that it says it will do.
Try everything you want to. I don't care if I don't agree with it or not. If you try it and it works that is awesome. But if you're like nearly everyone these days, you don't have the money to throw away at scams.
Here's a few tips that I've applied throughout the years to help guide me around the greedy freaks after my money. Hopefully it will help you keep some of yours.
- A Website, does not a legitimate business make. Any yahoo these days can put up a website, bottle some Oak Bark and claim that it has healing powers complete with "Customer Reviews". Sometimes your google search will give you a website, a youtube "news" commercial, and "Personal Blogs" that all hail the product as the best thing that cured them all. Actors can be hired, blogs can be faked. Look for a reputable source always! If it pops up on your local news station that you trust, then fine. But if it's some news station you've never heard of popping up on youtube...don't trust it.
- Stick with a reputable well-known distributor. "Bob's Vitamin Center" might not be as reliable as Vitamin Shoppe or BodyBuilder.com etc. If you don't know where to find a good supplier, someone trustworthy, buy popular health magazines and scan articles (NOT ADS) and look for sites that are mentioned. (I've seen companies make their own magazines and title it something like "Better Medicine" and in it are a bunch or articles about the miracle cure for Fibro/CFS/ Lupus etc. Funny how it mentions one supplement throughout the whole magazine. Not only are you buying the Mag but you're buying their product! The jerks!)
- A "BBB" logo (Better Business Bureau) isn't a guarantee. A lawyer friend told me it only means means they haven't been sued yet or sued successfully or sued without settlement. Kinda freaked me out.
- Watch out for the random touter as well. In any kind of support group you'll find that people will join up and act as if they found the cure for themselves and are just doing their duty in telling you about this little known cure. You usually don't see them poke around more than once or twice and they always claim that their one cure works in every post. "Oh you have itchy bumps? I had that too and I'm telling you Fibromyascam took it all away. I had to be on it for a month but it was well worth the four bottles of it for 50.00/pc."
-Do an ingredient search. If someone is claiming their oak bark cures it all, then try to find scientific evidence to support that. If they are saying that it is their "secret, patent pending" ingredient that is the cure...wait for that "patent" to go through. We've all seen these commercials over the years that have come and gone. When I was growing up it was an ancient pearl cream. I can't remember exactly what it was supposed to do but considering it was around for a few years and then gone, I'm going to say it didn't work and had duped as many people as they could and ran out of clients. There was also that breast enhancing pill. Blousant or something. That one made me giggle.
I'd love to hear stories about anything you tried that turned out badly. Also...if you have a website that you're unsure of and would like an opinion on, send me an email at fibrohelper@gmail.com. If you have a fibro website that you love and want to see get the thumbs up, send that as well.
I'm not trying to just out the scam websites but reward the good as well.
Be safe, my friends!
In the ill-health community it is no different.
It doesn't matter what you are afflicted with, chances are, there is someone out there who will swear they can cure you or cure you faster than what is sanctioned by the medical professionals.
Now, to be fair, not every supplement company out there can afford to pay the FDA the millions upon millions of dollars that are needed to run tests or studies that would validate their vitamin or their "cure". But as patients we have to ask ourselves why that is.
If something has been out there for a while, and still hasn't received the funding...well you have to use your best judgement. For me, I think of a vitamin that claims to help the heart, immune system, or whatever the claim is and I see the little Astrix that says "claim not FDA approved" and it doesn't bother me.
Vitamins are helpful, we all know that and so do the doctors. They tell us to take them so why would anyone need to spend millions of dollars to validate them? It would be nice though wouldn't it? We could all feel secure that we're not crazy. That vitamins really do what they say they do.
But it isn't vitamins that bothers me so much as supplement, holistic, homeopathic, and straight out bizarre cures. These are the ones that are targeted towards the sick in hopes of selling a product that 90% of the time doesn't do all that it says it will do.
Try everything you want to. I don't care if I don't agree with it or not. If you try it and it works that is awesome. But if you're like nearly everyone these days, you don't have the money to throw away at scams.
Here's a few tips that I've applied throughout the years to help guide me around the greedy freaks after my money. Hopefully it will help you keep some of yours.
- A Website, does not a legitimate business make. Any yahoo these days can put up a website, bottle some Oak Bark and claim that it has healing powers complete with "Customer Reviews". Sometimes your google search will give you a website, a youtube "news" commercial, and "Personal Blogs" that all hail the product as the best thing that cured them all. Actors can be hired, blogs can be faked. Look for a reputable source always! If it pops up on your local news station that you trust, then fine. But if it's some news station you've never heard of popping up on youtube...don't trust it.
- Stick with a reputable well-known distributor. "Bob's Vitamin Center" might not be as reliable as Vitamin Shoppe or BodyBuilder.com etc. If you don't know where to find a good supplier, someone trustworthy, buy popular health magazines and scan articles (NOT ADS) and look for sites that are mentioned. (I've seen companies make their own magazines and title it something like "Better Medicine" and in it are a bunch or articles about the miracle cure for Fibro/CFS/ Lupus etc. Funny how it mentions one supplement throughout the whole magazine. Not only are you buying the Mag but you're buying their product! The jerks!)
- A "BBB" logo (Better Business Bureau) isn't a guarantee. A lawyer friend told me it only means means they haven't been sued yet or sued successfully or sued without settlement. Kinda freaked me out.
- Watch out for the random touter as well. In any kind of support group you'll find that people will join up and act as if they found the cure for themselves and are just doing their duty in telling you about this little known cure. You usually don't see them poke around more than once or twice and they always claim that their one cure works in every post. "Oh you have itchy bumps? I had that too and I'm telling you Fibromyascam took it all away. I had to be on it for a month but it was well worth the four bottles of it for 50.00/pc."
-Do an ingredient search. If someone is claiming their oak bark cures it all, then try to find scientific evidence to support that. If they are saying that it is their "secret, patent pending" ingredient that is the cure...wait for that "patent" to go through. We've all seen these commercials over the years that have come and gone. When I was growing up it was an ancient pearl cream. I can't remember exactly what it was supposed to do but considering it was around for a few years and then gone, I'm going to say it didn't work and had duped as many people as they could and ran out of clients. There was also that breast enhancing pill. Blousant or something. That one made me giggle.
I'd love to hear stories about anything you tried that turned out badly. Also...if you have a website that you're unsure of and would like an opinion on, send me an email at fibrohelper@gmail.com. If you have a fibro website that you love and want to see get the thumbs up, send that as well.
I'm not trying to just out the scam websites but reward the good as well.
Be safe, my friends!
Thursday, February 19, 2009
Mourning The Life We Had. What?!
Recently I heard a Fibro Patient describe her transition from one phase of her life to the next by saying her pre-fibro life was like high school. It was over and she had to let it go. This was a great analogy! Except...the wrong one to live by.
Sure, there are certain things we won't always be able to do. Maybe we had a life where we taught people how to jump out of planes. Okay, with Fibro, we might not be able to do that anymore. But we can still jump out of planes! I know a few teachers who are affected by the Fibro Fog and have had to quit teaching. Or a bartender who can't stand up long enough to get through a shift and is terrified she'll pocket the money without intending to because her brain doesn't quite work as well as it used to.
Yes, our life before fibro is a lot like high school and we do have to let it go. But that doesn't mean we're done.
Do you really want to be sitting around moping about what you lost? What you can't do? Or do you want to set a new goal? Maybe one that is more reasonable.
Okay we can't instruct people how to fly through the sky or conduct a class full of screaming children (the most of which these days are starved for attention and love to make trouble) nor can we stand on our feet all day listening to the music pound in the background as we do our best Tom Cruise in Cocktail impression and make crazy tips!
Bye bye high school.
Hello College!
We have to get creative now. What we had grown comfortable with is no longer ours to have but don't sit around and mourn. (Okay maybe a little bit. Have a good cry session over the college you paid for in a job you can no longer do. But use your smarts to move on!)
When my writing career was put on hold because I couldn't get my brain to work for me, I started looking for other things to do. I came up with several ideas. Then once I felt better I got back to my writing but I still work on those other ideas in case it gets bad again.
I thought about opening an online shop where other Fibro patients who crafted things at home, sewed clothes, made toys, made jewelry, etc could all come together and sell their wares while raising Fibro Awareness. I thought about Fibro Patients who didn't craft, coming along and helping others at flea markets, state faires... as well as other venues by writing up pamphlets, baking goods, managing the online stores.
I had this idea...but haven't acted on it yet because I've been busy with my writing but I haven't given up on it. Myself and other Fibro sufferers could really get this off the ground and make something out of it so we could travel, have fun, bring awareness about our condition, demand answers by being in the limelight.
You see, I don't look on my life as a constant distancing of myself from High School. For me... my new ideas and future goals and successes are on a little island in the sea of life and I'm going to swim my ass off towards them for all I am worth.
lol.. and now the song "Just Keep Swimming" from Finding Nemo will be stuck in my head all day!
Mourning the life I had? Well, sometimes I think of how nice it would have been if...
But that's as far as I allow myself to get. That "if" doesn't exist. I have what I have and I'm going to work through it and get to the other side to happy and successful.
If you're interested in my little idea by the way...let me know via email at FibroHelper@gmail.com. If we get enough people who can devout some time to it, it won't have to wait until I have a ton of time to devout solo to it.
As always, My Friends, be well...and find your new island.
Sure, there are certain things we won't always be able to do. Maybe we had a life where we taught people how to jump out of planes. Okay, with Fibro, we might not be able to do that anymore. But we can still jump out of planes! I know a few teachers who are affected by the Fibro Fog and have had to quit teaching. Or a bartender who can't stand up long enough to get through a shift and is terrified she'll pocket the money without intending to because her brain doesn't quite work as well as it used to.
Yes, our life before fibro is a lot like high school and we do have to let it go. But that doesn't mean we're done.
Do you really want to be sitting around moping about what you lost? What you can't do? Or do you want to set a new goal? Maybe one that is more reasonable.
Okay we can't instruct people how to fly through the sky or conduct a class full of screaming children (the most of which these days are starved for attention and love to make trouble) nor can we stand on our feet all day listening to the music pound in the background as we do our best Tom Cruise in Cocktail impression and make crazy tips!
Bye bye high school.
Hello College!
We have to get creative now. What we had grown comfortable with is no longer ours to have but don't sit around and mourn. (Okay maybe a little bit. Have a good cry session over the college you paid for in a job you can no longer do. But use your smarts to move on!)
When my writing career was put on hold because I couldn't get my brain to work for me, I started looking for other things to do. I came up with several ideas. Then once I felt better I got back to my writing but I still work on those other ideas in case it gets bad again.
I thought about opening an online shop where other Fibro patients who crafted things at home, sewed clothes, made toys, made jewelry, etc could all come together and sell their wares while raising Fibro Awareness. I thought about Fibro Patients who didn't craft, coming along and helping others at flea markets, state faires... as well as other venues by writing up pamphlets, baking goods, managing the online stores.
I had this idea...but haven't acted on it yet because I've been busy with my writing but I haven't given up on it. Myself and other Fibro sufferers could really get this off the ground and make something out of it so we could travel, have fun, bring awareness about our condition, demand answers by being in the limelight.
You see, I don't look on my life as a constant distancing of myself from High School. For me... my new ideas and future goals and successes are on a little island in the sea of life and I'm going to swim my ass off towards them for all I am worth.
lol.. and now the song "Just Keep Swimming" from Finding Nemo will be stuck in my head all day!
Mourning the life I had? Well, sometimes I think of how nice it would have been if...
But that's as far as I allow myself to get. That "if" doesn't exist. I have what I have and I'm going to work through it and get to the other side to happy and successful.
If you're interested in my little idea by the way...let me know via email at FibroHelper@gmail.com. If we get enough people who can devout some time to it, it won't have to wait until I have a ton of time to devout solo to it.
As always, My Friends, be well...and find your new island.
Wednesday, February 18, 2009
Pain Meds vs. Treatment
On a few of my loops and groups I've noticed a growing number of Fibro Patients that talk a lot about the pain meds they take. Despite my reservations about acknowledging the fact that they are needed, I'm here to testify that I know in many cases they are.
When I get a horrible headache regardless of the precautions I take and the vitamins I ingest and the stretches I do and the workouts I sweat for...every once and a while I'm going to get pain. And not just any pain...FIBRO PAIN. Gahhhh.
I've often talked about how well I've been doing and how I haven't needed anything chemical. (Which is good because most pain meds and other chemical products all make me have horrible reactions. Yippy.) But yes.. even I have five steps forward and one back.
Yesterday, I had the mother of all migraines. You know the type. Can't move, can barely breathe, throwing up from a side position. Weeee.. fun. The most hard core drug I can stomach these days is fioricet. It took the edge off after a night of hell.
But here's my point. Pain meds have their uses. When things get so bad we can't move...popping a pill is fine. No one should have to lay around in agony.
HOWEVER, I have seen an alarming rise in people who say they have tried everything and nothing has worked except narcotics. "What are you doing now?" I ask.
"Nothing," I was told. "My doctor and I have tried everything and now it's just percocet."
I refuse to believe that. I don't care if everything else has failed you should still be trying something! There is NO REASON to stop taking Vitamins because you believe they stopped working for you. Well.. your body needs them anyway so why stop? Why put yourself at a disadvantage by refusing to take them because they didn't make you feel awesome again?
Here's what I want to stress to you today my friends. Pain Medication is NOT a Fibromyalgia treatment. Anti-depressants, anti-inflammatories, vitamins and supplements, chiropractic care, physical therapy, and exercise....THOSE are Fibro treatments and I hope with all of the medical break-throughs every day that we'll be able to add to that list.
When the fibro treatments aren't enough or we have really bad days of pain (which happen to even the healthiest Fibro Patients) you can take something to take the edge off and get back to your treatments.
But if all you're looking for is a drug that will keep you high and happy until someone discovers a cure...well...you're going to miss half of your life. You're also going to lose a lot of respect and a lot of ground for those Fibro patients who are struggling every day to fight, not only the condition, but the stigma that surrounds it.
Keep your pain meds. You'll need them my friend, but do NOT use them as a tool to hide behind. Take control of your body and your condition. Fight it, don't mask it.
As always, be well friends!
When I get a horrible headache regardless of the precautions I take and the vitamins I ingest and the stretches I do and the workouts I sweat for...every once and a while I'm going to get pain. And not just any pain...FIBRO PAIN. Gahhhh.
I've often talked about how well I've been doing and how I haven't needed anything chemical. (Which is good because most pain meds and other chemical products all make me have horrible reactions. Yippy.) But yes.. even I have five steps forward and one back.
Yesterday, I had the mother of all migraines. You know the type. Can't move, can barely breathe, throwing up from a side position. Weeee.. fun. The most hard core drug I can stomach these days is fioricet. It took the edge off after a night of hell.
But here's my point. Pain meds have their uses. When things get so bad we can't move...popping a pill is fine. No one should have to lay around in agony.
HOWEVER, I have seen an alarming rise in people who say they have tried everything and nothing has worked except narcotics. "What are you doing now?" I ask.
"Nothing," I was told. "My doctor and I have tried everything and now it's just percocet."
I refuse to believe that. I don't care if everything else has failed you should still be trying something! There is NO REASON to stop taking Vitamins because you believe they stopped working for you. Well.. your body needs them anyway so why stop? Why put yourself at a disadvantage by refusing to take them because they didn't make you feel awesome again?
Here's what I want to stress to you today my friends. Pain Medication is NOT a Fibromyalgia treatment. Anti-depressants, anti-inflammatories, vitamins and supplements, chiropractic care, physical therapy, and exercise....THOSE are Fibro treatments and I hope with all of the medical break-throughs every day that we'll be able to add to that list.
When the fibro treatments aren't enough or we have really bad days of pain (which happen to even the healthiest Fibro Patients) you can take something to take the edge off and get back to your treatments.
But if all you're looking for is a drug that will keep you high and happy until someone discovers a cure...well...you're going to miss half of your life. You're also going to lose a lot of respect and a lot of ground for those Fibro patients who are struggling every day to fight, not only the condition, but the stigma that surrounds it.
Keep your pain meds. You'll need them my friend, but do NOT use them as a tool to hide behind. Take control of your body and your condition. Fight it, don't mask it.
As always, be well friends!
Monday, February 16, 2009
IBS Tips
A great many Fibro sufferers find they have IBS. It can also come and go just like Fibro flare-ups and be just as binding. (no pun intended)
If everything you eat makes you run to the lavatory, your social life is cut back to zero. No dinner, no movies, no driving long distances. Its very debilitating.
Now with that being said, like Fibro, it is manageable. I recommend the books by Heather Van Vorous. Eating for IBS and IBS the first year.
You'll learn more about your IBS and how to better manage it. Some people claim that they have gone off of all IBS pills and manage their IBS strictly through dieting. I think that's great! But it doesn't always work. Some of the finer points of Ms. Van Vorous' advice is usually skipped or taken too quickly.
So here's a few quick tips:
-Don't try to change your entire diet at once. An extreme diet change can have just as dire consequences as a poor diet. Start slow and introduce new things a little bit at a time.
- Keep a diary. Just because food says it is IBS "safe" doesn't mean it is. In Fibro, we develop reactions to things at the drop of a hat. Keep a daily diary about what you have eaten and whether you had an adverse reaction to it. You can rule out foods using the diary that have set your stomach into a frenzy. HOWEVER: It must be noted that some days IBS isn't about the food you eat or how fast you eat it. But instead...your nerves. So in the diary, keep track of your emotional state as well. Give foods a couple of chances.
-Eat slower. We're always in a rush aren't we? I remember sitting at the table at my cousins house and my peers were like "HURRY UP...we can't play until you're done. Eat faster." Now I can eat an entire plate of food in 15 minutes. It took me 40 minutes to eat my tuna melt yesterday and I was able to keep it in for normal digestion. Time to party.
-Eat Fiber. Ms. Van Vorous speaks about soluble and insoluble fiber. Things I never knew honestly. Fiber was fiber right? WRONG. lol. Boy do I feel uneducated. Get the books or do a little bit of online research to find out the list of differences. One thing I started to do was eat fiber cookies from Metamucil every morning with some peppermint tea. Which brings me to another quick tip taken from "Eating For IBS".
-Peppermint. It's a natural bowel soother. I had heard this before but needed it hammered into my head by Ms. Van Vorous. If you can't stand the taste of peppermint, try chamomile.
-Do Not be afraid to eat. Recently, someone in a group I belong to was so tired of nothing sitting well in her belly that she stopped eating. That's the worst thing you can do. Keep eating! Just eat softer, more easily digestible foods. If you're having a bad few days, take it down a notch or five. Broths, jello, clear liquids... then introduce rice and yogurt, then crackers and breads... etc. Give your stomach a break if you must but not too much.
-Take relaxing baths. I find that when I get really bad, I start worrying over what kind of life I'm going to have if I can't control my IBS! Part of the condition goes hand in hand with stress and worry. A cousin of mine had severe IBS because her husband was in Iraq, the poor thing. Now she gets it when she spends too much money. Which is almost funny if you knew her. Regardless...take a hot bath, remain positive. So today something didn't sit right with you. You'll fix it.
As with Fibro, so is IBS. Remain positive, fight for bathroom freedom! lol
We can do this and get back to the things that matter to us.
Be well my friends!
If everything you eat makes you run to the lavatory, your social life is cut back to zero. No dinner, no movies, no driving long distances. Its very debilitating.
Now with that being said, like Fibro, it is manageable. I recommend the books by Heather Van Vorous. Eating for IBS and IBS the first year.
You'll learn more about your IBS and how to better manage it. Some people claim that they have gone off of all IBS pills and manage their IBS strictly through dieting. I think that's great! But it doesn't always work. Some of the finer points of Ms. Van Vorous' advice is usually skipped or taken too quickly.
So here's a few quick tips:
-Don't try to change your entire diet at once. An extreme diet change can have just as dire consequences as a poor diet. Start slow and introduce new things a little bit at a time.
- Keep a diary. Just because food says it is IBS "safe" doesn't mean it is. In Fibro, we develop reactions to things at the drop of a hat. Keep a daily diary about what you have eaten and whether you had an adverse reaction to it. You can rule out foods using the diary that have set your stomach into a frenzy. HOWEVER: It must be noted that some days IBS isn't about the food you eat or how fast you eat it. But instead...your nerves. So in the diary, keep track of your emotional state as well. Give foods a couple of chances.
-Eat slower. We're always in a rush aren't we? I remember sitting at the table at my cousins house and my peers were like "HURRY UP...we can't play until you're done. Eat faster." Now I can eat an entire plate of food in 15 minutes. It took me 40 minutes to eat my tuna melt yesterday and I was able to keep it in for normal digestion. Time to party.
-Eat Fiber. Ms. Van Vorous speaks about soluble and insoluble fiber. Things I never knew honestly. Fiber was fiber right? WRONG. lol. Boy do I feel uneducated. Get the books or do a little bit of online research to find out the list of differences. One thing I started to do was eat fiber cookies from Metamucil every morning with some peppermint tea. Which brings me to another quick tip taken from "Eating For IBS".
-Peppermint. It's a natural bowel soother. I had heard this before but needed it hammered into my head by Ms. Van Vorous. If you can't stand the taste of peppermint, try chamomile.
-Do Not be afraid to eat. Recently, someone in a group I belong to was so tired of nothing sitting well in her belly that she stopped eating. That's the worst thing you can do. Keep eating! Just eat softer, more easily digestible foods. If you're having a bad few days, take it down a notch or five. Broths, jello, clear liquids... then introduce rice and yogurt, then crackers and breads... etc. Give your stomach a break if you must but not too much.
-Take relaxing baths. I find that when I get really bad, I start worrying over what kind of life I'm going to have if I can't control my IBS! Part of the condition goes hand in hand with stress and worry. A cousin of mine had severe IBS because her husband was in Iraq, the poor thing. Now she gets it when she spends too much money. Which is almost funny if you knew her. Regardless...take a hot bath, remain positive. So today something didn't sit right with you. You'll fix it.
As with Fibro, so is IBS. Remain positive, fight for bathroom freedom! lol
We can do this and get back to the things that matter to us.
Be well my friends!
Saturday, February 14, 2009
As Requested: The List
This list is posted on about.com but has been meshed with a couple of other claims to Fibro to try to make it even more complete. I love that website as some of you know. It also has a GREAT Fibro community ,though sometimes there are a few depressing people there. The Board Guide does her job well, so its a pleasant support group for the most part. Check them out: http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab-chronicfatig
Without further ado, for your convenience, here's the "Monster Fibro Symptom List".
General Fibromyalgia Symptoms
Delayed reactions to physical exertion or stressful events
Other family members with fibromyalgia
Sweats
Unexplained weight gain or loss
Cravings for carbohydrate and chocolate
Headaches/Migraines
Muscle & Tissue-Related Fibromyalgia Symptoms
Pain that ranges from mild to severe, and may move around the body
Morning stiffness
Muscle twitches
Diffuse swelling
Fibrocystic (lumpy, tender) breasts (as an overlapping condition)
Sinus & Allergy-Related Fibromyalgia Symptoms
Allergies
Post nasal drip
Runny nose
Sinusitis
Mold & yeast sensitivity
Shortness of breath
Earaches & itchy ears
Ringing ears (tinitis)
Thick secretions
Sleep-Related Fibromyalgia Symptoms
Light and/or broken sleep pattern with unrefreshing sleep
Fatigue
Sleep starts (falling sensations)
Twitchy muscles at night
Teeth grinding (bruxism)
Reproductive Fibromyalgia Symptoms
Menstrual problems
PMS (as an overlapping condition)
Loss of libido
Impotence
Abdominal & Digestive Fibromyalgia Symptoms
Bloating & nausea
Abdominal cramps
Pelvic pain
Irritable bowel syndrome (as an overlapping condition)
Urinary frequency
Cognitive (fibrofog) Fibromyalgia Symptoms
Difficulty speaking known words
Directional disorientation
Loss of ability to distinguish some shades of colors
Short-term memory impairment
Confusion
Trouble concentrating
Staring into space before brain "kicks in"
Inability to recognize familiar surroundings
Sensory Fibromyalgia Symptoms
Sensitivity to odors
Sensitivity to pressure changes, temperature & humidity
Sensitivity to light
Sensitivity to noise
Night driving difficulty
Sensory overload
Paresthesias in the upper limbs(tingling or burning sensations)
Emotional Fibromyalgia Symptoms
Panic attacks
Depression (as an overlapping condition)
Tendency to cry easily
Free-floating anxiety (not associated with situation or object)
Mood swings
Unaccountable irritability
Heart-Related Fibromyalgia Symptoms
Mitral valve prolapse (as an overlapping condition)
Rapid, fluttery, irregular heartbeat
Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)
Skin, Hair & Nail-Related Fibromyalgia Symptoms
Pronounced nail ridges
Nails that curve under
Mottled skin
Bruising or scaring easily
Hair loss (temporary)
Tissue overgrowth (non-cancerous tumors, ingrown hairs, heavy and splitting cuticles, adhesions)
Itchy skin
Miscellaneous Fibromyalgia Symptoms
Hemorrhoids
Nose bleeds
Without further ado, for your convenience, here's the "Monster Fibro Symptom List".
General Fibromyalgia Symptoms
Delayed reactions to physical exertion or stressful events
Other family members with fibromyalgia
Sweats
Unexplained weight gain or loss
Cravings for carbohydrate and chocolate
Headaches/Migraines
Muscle & Tissue-Related Fibromyalgia Symptoms
Pain that ranges from mild to severe, and may move around the body
Morning stiffness
Muscle twitches
Diffuse swelling
Fibrocystic (lumpy, tender) breasts (as an overlapping condition)
Sinus & Allergy-Related Fibromyalgia Symptoms
Allergies
Post nasal drip
Runny nose
Sinusitis
Mold & yeast sensitivity
Shortness of breath
Earaches & itchy ears
Ringing ears (tinitis)
Thick secretions
Sleep-Related Fibromyalgia Symptoms
Light and/or broken sleep pattern with unrefreshing sleep
Fatigue
Sleep starts (falling sensations)
Twitchy muscles at night
Teeth grinding (bruxism)
Reproductive Fibromyalgia Symptoms
Menstrual problems
PMS (as an overlapping condition)
Loss of libido
Impotence
Abdominal & Digestive Fibromyalgia Symptoms
Bloating & nausea
Abdominal cramps
Pelvic pain
Irritable bowel syndrome (as an overlapping condition)
Urinary frequency
Cognitive (fibrofog) Fibromyalgia Symptoms
Difficulty speaking known words
Directional disorientation
Loss of ability to distinguish some shades of colors
Short-term memory impairment
Confusion
Trouble concentrating
Staring into space before brain "kicks in"
Inability to recognize familiar surroundings
Sensory Fibromyalgia Symptoms
Sensitivity to odors
Sensitivity to pressure changes, temperature & humidity
Sensitivity to light
Sensitivity to noise
Night driving difficulty
Sensory overload
Paresthesias in the upper limbs(tingling or burning sensations)
Emotional Fibromyalgia Symptoms
Panic attacks
Depression (as an overlapping condition)
Tendency to cry easily
Free-floating anxiety (not associated with situation or object)
Mood swings
Unaccountable irritability
Heart-Related Fibromyalgia Symptoms
Mitral valve prolapse (as an overlapping condition)
Rapid, fluttery, irregular heartbeat
Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)
Skin, Hair & Nail-Related Fibromyalgia Symptoms
Pronounced nail ridges
Nails that curve under
Mottled skin
Bruising or scaring easily
Hair loss (temporary)
Tissue overgrowth (non-cancerous tumors, ingrown hairs, heavy and splitting cuticles, adhesions)
Itchy skin
Miscellaneous Fibromyalgia Symptoms
Hemorrhoids
Nose bleeds
Sympathizing With The Incredible Hulk
Happy Valentine's Day friends! Or should I say...Hallmark Holiday? I was never that into celebrating V-day although it does get me dinner once and a while.
Today is a good reminder that life goes on around us all the time and to be light-hearted whenever we can because the burden we carry is so heavy.
On a couple of my loops today I'm going to start strings on what inspires everyone to get happy when they really need it. Feel free to share your stories in comments to this article if you like. I love hearing from everyone.
One of the things I love to do when I'm feeling down is watch movies. It usually pumps me up but it can also make me have a good cry session that results in a "moment" for me. Those moments...though technical not a good moment, is essential so that I can have my positive times.
So in a sense, movies help me change my mood to best benefit me. Music also has that power, though TV, for me, is last on the totem pole. I like to read as well but that requires focus. My focus isn't always reliable. LOL TV for me is good because of the History Channel and Discovery. I'm a huge history fan and watching ancient civilizations discovered and explained is oddly soothing to me.
Get to the Incredible Hulk story already! I bet you're saying that.
It is impossible for me to go to bed before 2a.m. unless I'm wicked sick. So I watch movies that I've seen so much that they don't hold my interest so strongly that I stay awake. One of the most recent movies that I watch when I lay down to sleep is The Incredible Hulk. (The Ed Norton/most recent version)
I love it. And last night as I'm falling asleep I realized why.
Anyone with Fibro could have played that part perfectly. The movie starts out with a counter "Days since last incident". We can all relate to that. It can be us counting until our last flare-up or our last IBS episode etc.
Bruce Banner is trying to find a normal life, constantly researching in hope the a cure will come out of the haze of his life, which is no longer his own. Newp...he shares it with the Hulk.
I can't speak for everyone, but on my horrible days (Hulk days) I am not a good person to be around. I will snap someones head off their body if they say the wrong thing. And my the Universe help them if they say something insulting!
One part of the movie, Bruce is looking at himself in the mirror and that was when the profound revelation that I related to this character hit me. There was such sorrow in that moment. It was probably less than 30 seconds but for me it was the best part of the movie. It was as if he were trying to find himself in the reflection...what he had once been or maybe, looking for what he could be if he knew what to do.
There's a part where they're in the car and Betty is trying to console Bruce Banner by telling him that it's okay. That the Hulk is just and extension of who he is and she's sure that a part of him is still in there somewhere. And typically of Bruce (and Fibro patients) he snaps at her: "I don't want to control it I want to get rid of it!"
RAAAAARRRRRR! One thing we don't have that the Hulk does is the ability to bash peoples heads in with an automobile. Tell me that wouldn't be fun the next time you see one of those "Fibromyalgia patients are a bunch of fat lazy housewives in need of attention" posts.
Be well my friends!
What Inspires Me:
Movies: Apollo 13, 13th Warrior, The Incredible Hulk, Ghostbusters, Lost In Translation
Music: Evanessence, Breaking Benjamin, 30 seconds to Mars, movie soundtracks (Gladiator among others.)
TV: Anything on the History Channel and Discovery that covers historic people and places.
Books: Romance and Erotic novels.
Others: Sick children. Watching their strength gives me strength.
"! and ... " Two punctuations you will see me abuse on a regular basis.
My daughter and her laughter.
My traveling dreams and the promise of a happy relationship.
Improvisational writing...the muse of my creativity.
The planet Earth and all her elements.
Today is a good reminder that life goes on around us all the time and to be light-hearted whenever we can because the burden we carry is so heavy.
On a couple of my loops today I'm going to start strings on what inspires everyone to get happy when they really need it. Feel free to share your stories in comments to this article if you like. I love hearing from everyone.
One of the things I love to do when I'm feeling down is watch movies. It usually pumps me up but it can also make me have a good cry session that results in a "moment" for me. Those moments...though technical not a good moment, is essential so that I can have my positive times.
So in a sense, movies help me change my mood to best benefit me. Music also has that power, though TV, for me, is last on the totem pole. I like to read as well but that requires focus. My focus isn't always reliable. LOL TV for me is good because of the History Channel and Discovery. I'm a huge history fan and watching ancient civilizations discovered and explained is oddly soothing to me.
Get to the Incredible Hulk story already! I bet you're saying that.
It is impossible for me to go to bed before 2a.m. unless I'm wicked sick. So I watch movies that I've seen so much that they don't hold my interest so strongly that I stay awake. One of the most recent movies that I watch when I lay down to sleep is The Incredible Hulk. (The Ed Norton/most recent version)
I love it. And last night as I'm falling asleep I realized why.
Anyone with Fibro could have played that part perfectly. The movie starts out with a counter "Days since last incident". We can all relate to that. It can be us counting until our last flare-up or our last IBS episode etc.
Bruce Banner is trying to find a normal life, constantly researching in hope the a cure will come out of the haze of his life, which is no longer his own. Newp...he shares it with the Hulk.
I can't speak for everyone, but on my horrible days (Hulk days) I am not a good person to be around. I will snap someones head off their body if they say the wrong thing. And my the Universe help them if they say something insulting!
One part of the movie, Bruce is looking at himself in the mirror and that was when the profound revelation that I related to this character hit me. There was such sorrow in that moment. It was probably less than 30 seconds but for me it was the best part of the movie. It was as if he were trying to find himself in the reflection...what he had once been or maybe, looking for what he could be if he knew what to do.
There's a part where they're in the car and Betty is trying to console Bruce Banner by telling him that it's okay. That the Hulk is just and extension of who he is and she's sure that a part of him is still in there somewhere. And typically of Bruce (and Fibro patients) he snaps at her: "I don't want to control it I want to get rid of it!"
RAAAAARRRRRR! One thing we don't have that the Hulk does is the ability to bash peoples heads in with an automobile. Tell me that wouldn't be fun the next time you see one of those "Fibromyalgia patients are a bunch of fat lazy housewives in need of attention" posts.
Be well my friends!
What Inspires Me:
Movies: Apollo 13, 13th Warrior, The Incredible Hulk, Ghostbusters, Lost In Translation
Music: Evanessence, Breaking Benjamin, 30 seconds to Mars, movie soundtracks (Gladiator among others.)
TV: Anything on the History Channel and Discovery that covers historic people and places.
Books: Romance and Erotic novels.
Others: Sick children. Watching their strength gives me strength.
"! and ... " Two punctuations you will see me abuse on a regular basis.
My daughter and her laughter.
My traveling dreams and the promise of a happy relationship.
Improvisational writing...the muse of my creativity.
The planet Earth and all her elements.
Friday, February 13, 2009
Adding Soldiers To The War...Safely.
As I sit here lining up my soldiers, (the myriad vitamins I take everyday) a few things occur to me. The first is that it is going to take me two swallows instead of one to get all of these down and the second is that Amino Acids really stink. Every time I open the bottle to fish out my two pills I'm hit with the glorious smell of petrified goat urine. At least that is what I imagine petrified goat urine to smell like.
Yes, my friends, I have added to my vitamin supplements again. I took 2 Amino Acid pills and a B-12 complex last night and I felt... fabulous! Except I took them before bed. The B-12 kept me up all night like usual when the hope was that the amino acids would help put me to sleep.
This is a classic case of me not paying attention. I get excited when I read up on a vitamin and decide to add it to my regimen and thereby dooming myself to premature pill-popping! What I discovered in my haste is obviously B-12 is best taken during the day! (Which if I were thinking straight I already knew since those little energy drinks are...you guessed it.. b-12 goodness.) I also discovered...B-12 pills and IBS don't mix. Unfortunately I fell off the food wagon last night and had a Subway melt which hasn't messed me up in the past but with IBS you never know what will mess you up and when. So it is possible it could have been that. But I'm thinking the B-12 is the culprit. I'm looking into a liquid form that not only has the B-12 but Folic Acid.
This seems like a good time to talk about the misuse of Vitamins. There are a few points I wanted to make quickly since I tout natural cures on this page.
Add a little at a time!! Fibro patients are known to suffer from IBS more often than not and it can come and go too. So start out slow. My suggestion is Magnesium and Vitamin D first. Then add a pill a week or every other week.
Remember that results aren't always quick. Sometimes our body is pretty deficient and it could take a few days or, as a few people have claimed to me, weeks. I started feeling better 4 days after I took Magnesium and Vitamin D. (I added five more vitamins that 5th day and ended up having to go back to just the 2 and introduce them slowly.)
Do the research! There are some vitamins that won't harm you with excessive doses. There are others that can be just as dangerous as Pharm Meds when taking more than you should. Always consult your doctor if you're concerned.
Ask your doctor about testing you for vitamin deficiencies. During research you'll read about a lot of vitamins you "need". It usually doesn't hurt to take them but if you don't want to pop more vitamins go to your GP and ask to be tested.
Keep a daily vitamin journal, or add vitamin intake to your existing journal.
I keep a food, pain, fatigue, and vitamin daily journal. Its tedious but when something goes wrong, I can usual track where I've screwed up. Or worse...when I haven't and its just a Fibro perk. (Yippy!)
I'll keep you posted as to how I feel getting the B-12 into my system. It's supposed to help with depression among other things but that is why I'm taking it. I feel good but sometimes still get pouty. I'd like to abolish that completely!
Take care everyone and as always, be careful.
Yes, my friends, I have added to my vitamin supplements again. I took 2 Amino Acid pills and a B-12 complex last night and I felt... fabulous! Except I took them before bed. The B-12 kept me up all night like usual when the hope was that the amino acids would help put me to sleep.
This is a classic case of me not paying attention. I get excited when I read up on a vitamin and decide to add it to my regimen and thereby dooming myself to premature pill-popping! What I discovered in my haste is obviously B-12 is best taken during the day! (Which if I were thinking straight I already knew since those little energy drinks are...you guessed it.. b-12 goodness.) I also discovered...B-12 pills and IBS don't mix. Unfortunately I fell off the food wagon last night and had a Subway melt which hasn't messed me up in the past but with IBS you never know what will mess you up and when. So it is possible it could have been that. But I'm thinking the B-12 is the culprit. I'm looking into a liquid form that not only has the B-12 but Folic Acid.
This seems like a good time to talk about the misuse of Vitamins. There are a few points I wanted to make quickly since I tout natural cures on this page.
Add a little at a time!! Fibro patients are known to suffer from IBS more often than not and it can come and go too. So start out slow. My suggestion is Magnesium and Vitamin D first. Then add a pill a week or every other week.
Remember that results aren't always quick. Sometimes our body is pretty deficient and it could take a few days or, as a few people have claimed to me, weeks. I started feeling better 4 days after I took Magnesium and Vitamin D. (I added five more vitamins that 5th day and ended up having to go back to just the 2 and introduce them slowly.)
Do the research! There are some vitamins that won't harm you with excessive doses. There are others that can be just as dangerous as Pharm Meds when taking more than you should. Always consult your doctor if you're concerned.
Ask your doctor about testing you for vitamin deficiencies. During research you'll read about a lot of vitamins you "need". It usually doesn't hurt to take them but if you don't want to pop more vitamins go to your GP and ask to be tested.
Keep a daily vitamin journal, or add vitamin intake to your existing journal.
I keep a food, pain, fatigue, and vitamin daily journal. Its tedious but when something goes wrong, I can usual track where I've screwed up. Or worse...when I haven't and its just a Fibro perk. (Yippy!)
I'll keep you posted as to how I feel getting the B-12 into my system. It's supposed to help with depression among other things but that is why I'm taking it. I feel good but sometimes still get pouty. I'd like to abolish that completely!
Take care everyone and as always, be careful.
Thursday, February 12, 2009
The Dangers of Self Pity and Support Groups
Far too often in many Fibromyalgia groups there is a common link that has nothing to do with the disorder itself. It's the common ground of self pity.
The majority of us wake up in the morning and the first thought on our mind is our health and lack of happiness because of it. We do a quick run-down of what hurts to move and the severity from 0-10. Then we spend the rest of our day trying to get through work or raising babies or even getting the gumption to get out of bed.
And that is simply the wrong attitude to have. It also happens to be what helps keep our flares up and our morale down.
I get a lot of friend requests and even IM and email compliments about my positive attitude and it shocks me how surprised most people are about my upbeat "go-get-em" fighting stance against Fibro.
I shouldn't be a rarity but the norm!
The problem with support groups is that they are usually filled with more than just questions about the condition. It is full of pain rants and ravings and desperate calls for help. It is always good to help out those who have a burning need to find out information or to be comforted by those that understand what they are going through. THE PROBLEM lies in the gift itself. Talking with those who have Fibro is a gift, make no mistake, but it can also be a curse.
For example... someone asks about their elbow tingling and if it happens to anyone else. Others answer that they do, its normal etc. But the majority of responders will add more. Their own tales of woe, or how they spoke to their doctor about the pain and he put them through a bunch of tests and nothing they do can get rid of the agony they now feel as the "tingling" developed.
Okay the responder was trying to make the questioner feel better but in fact, the response was so detailed that it ended up making the questioner afraid that her own tingling elbow was about to get worse and never go away, plaguing her for the rest of her life. Thus bringing up a new round of self pity with the horrible prospect of an unknown future. More stress, more sickness, more self pity or worse...hatred. "What's the point of getting out of bed? It will only hurt more and I'll get worse and feel worse and...and...." The vicious circle continues!
Let me just say...oi.
It happens all the time and spending too much time around Fibro patients can be a real downer. It was part of the reason I started this blog for people to go to ask questions and get one positive answer and I have promised to silence the negative nancies.
Fight back on your support groups. Don't let people start a negative chain. Call them on it. "I can't do anything, I feel so horrible I don't want to move today." Well then you're not trying.
Keep things in perspective. I donate to St. Jude's Children's Hospital. And if those kids can fight through their sickness to get enough energy to play for an hour we can get our butts out of bed and fight a NON-FATAL condition like Fibro.
We're all in pain. We all suffer. Our pains are alike but they don't have to evolve similarly. We each can take control of our Fibro by customizing our meds to fit our own beliefs and symptoms!
Don't let self pity and worry drag you into despondency and despair.
Fight! Fight every day! If today is a bad day, deal with it, do research, get yourself pumped up for the fight the next day and know that someone out there is determined to fight all the way to the top to find answers for us all. And I'm not just talking about me. There are others out there as determined as I. We'll get there. I have no doubt about it!
And while we fight for a cure in the future, we can get better now. We can feel better by taking control and I'm proof of that! Stay strong and positive my friends.
All my best,
The majority of us wake up in the morning and the first thought on our mind is our health and lack of happiness because of it. We do a quick run-down of what hurts to move and the severity from 0-10. Then we spend the rest of our day trying to get through work or raising babies or even getting the gumption to get out of bed.
And that is simply the wrong attitude to have. It also happens to be what helps keep our flares up and our morale down.
I get a lot of friend requests and even IM and email compliments about my positive attitude and it shocks me how surprised most people are about my upbeat "go-get-em" fighting stance against Fibro.
I shouldn't be a rarity but the norm!
The problem with support groups is that they are usually filled with more than just questions about the condition. It is full of pain rants and ravings and desperate calls for help. It is always good to help out those who have a burning need to find out information or to be comforted by those that understand what they are going through. THE PROBLEM lies in the gift itself. Talking with those who have Fibro is a gift, make no mistake, but it can also be a curse.
For example... someone asks about their elbow tingling and if it happens to anyone else. Others answer that they do, its normal etc. But the majority of responders will add more. Their own tales of woe, or how they spoke to their doctor about the pain and he put them through a bunch of tests and nothing they do can get rid of the agony they now feel as the "tingling" developed.
Okay the responder was trying to make the questioner feel better but in fact, the response was so detailed that it ended up making the questioner afraid that her own tingling elbow was about to get worse and never go away, plaguing her for the rest of her life. Thus bringing up a new round of self pity with the horrible prospect of an unknown future. More stress, more sickness, more self pity or worse...hatred. "What's the point of getting out of bed? It will only hurt more and I'll get worse and feel worse and...and...." The vicious circle continues!
Let me just say...oi.
It happens all the time and spending too much time around Fibro patients can be a real downer. It was part of the reason I started this blog for people to go to ask questions and get one positive answer and I have promised to silence the negative nancies.
Fight back on your support groups. Don't let people start a negative chain. Call them on it. "I can't do anything, I feel so horrible I don't want to move today." Well then you're not trying.
Keep things in perspective. I donate to St. Jude's Children's Hospital. And if those kids can fight through their sickness to get enough energy to play for an hour we can get our butts out of bed and fight a NON-FATAL condition like Fibro.
We're all in pain. We all suffer. Our pains are alike but they don't have to evolve similarly. We each can take control of our Fibro by customizing our meds to fit our own beliefs and symptoms!
Don't let self pity and worry drag you into despondency and despair.
Fight! Fight every day! If today is a bad day, deal with it, do research, get yourself pumped up for the fight the next day and know that someone out there is determined to fight all the way to the top to find answers for us all. And I'm not just talking about me. There are others out there as determined as I. We'll get there. I have no doubt about it!
And while we fight for a cure in the future, we can get better now. We can feel better by taking control and I'm proof of that! Stay strong and positive my friends.
All my best,
Tuesday, February 10, 2009
What Works For Me.
I often talk about what works for me on certain loops and I get a lot of emails and messages asking me to clarify or why I take specific supplements.
Honestly, it is one of the reasons I created this blog. I LOVE questions, but if I could stop answering the "what are you on and why" question, I could get back to the others that take a little longer to answer.
The Vitamins:
Vitamin D (About 2000 IUs but some other people take 5000 IUs. Ask your doctor.) For bone, joint, and immune system help.
Vitamin C (500mg time release) Immune health.
Magnesium (500 mg) Magnesium helps heart health, migraines, bone and muscle pain. This IS the Fibro natural drug my friends. Make sure you're taking it!
Multi-vitamin (I prefer a vegan multi but I also like Alive* Whole Food Energizer. Anything that gives us more energy is a plus!)
The Supplements: (Also vitamins? I'm a bit fuzzy on the difference if there is one. These things that I take are not the average vitamin so I'm putting them in a separate list.)
Omega 3-6-9 (2 softgels daily) It promotes heart health and circulation.
Probiotics (8 billion Acidophilus and Bifidus) For stomach regulation. I took a lot of antibiotics and my stomach went crazy! I now have IBS. Yippy.
D-Ribose (1 scoop a day) D-Ribose is expensive but it is touted to help with muscle pain and stiffness and help you sleep! What isn't to like? It is also said to give you energy.
Acai Berry (1.5 scoops of Sambazon powder.) When I had no energy I heard about Monavie. I couldn't afford it so I had to try other alternatives. I found Sambazon and had a smoothie a day with it. I had a burst of energy that enabled me to start regular exercise sessions. I take it 3 times a week now though, as I seem to have developed a good source of energy without building a dependency. Acai berry mixed with blueberries and raspberries gives a great source of anti-oxidants which many studies suggest a lowering in cancer risk. Wooo...sign me up!
Honestly, it is one of the reasons I created this blog. I LOVE questions, but if I could stop answering the "what are you on and why" question, I could get back to the others that take a little longer to answer.
The Vitamins:
Vitamin D (About 2000 IUs but some other people take 5000 IUs. Ask your doctor.) For bone, joint, and immune system help.
Vitamin C (500mg time release) Immune health.
Magnesium (500 mg) Magnesium helps heart health, migraines, bone and muscle pain. This IS the Fibro natural drug my friends. Make sure you're taking it!
Multi-vitamin (I prefer a vegan multi but I also like Alive* Whole Food Energizer. Anything that gives us more energy is a plus!)
The Supplements: (Also vitamins? I'm a bit fuzzy on the difference if there is one. These things that I take are not the average vitamin so I'm putting them in a separate list.)
Omega 3-6-9 (2 softgels daily) It promotes heart health and circulation.
Probiotics (8 billion Acidophilus and Bifidus) For stomach regulation. I took a lot of antibiotics and my stomach went crazy! I now have IBS. Yippy.
D-Ribose (1 scoop a day) D-Ribose is expensive but it is touted to help with muscle pain and stiffness and help you sleep! What isn't to like? It is also said to give you energy.
Acai Berry (1.5 scoops of Sambazon powder.) When I had no energy I heard about Monavie. I couldn't afford it so I had to try other alternatives. I found Sambazon and had a smoothie a day with it. I had a burst of energy that enabled me to start regular exercise sessions. I take it 3 times a week now though, as I seem to have developed a good source of energy without building a dependency. Acai berry mixed with blueberries and raspberries gives a great source of anti-oxidants which many studies suggest a lowering in cancer risk. Wooo...sign me up!
Who Are You Gin?
That's a pretty deep question, but instead of getting all Confucius with it, I'll answer simply. I am a mother. I am a writer. I am a woman who was diagnosed with Fibromyalgia. After that I became a whiner, a mourner, a victim, a stereotype, a cynic, a hater. I lost my old life, my old hopes, my old dreams, my husband, my pride, my self esteem.
I gave up.
And then I was rescued by someone small of stature but big on wisdom. Only she doesn't exactly know it.
My four year old daughter came into my room one morning and crawled into bed with me. She sighed and asked me if I was hurting. Of course I was, but I smiled and tried to tell her that mama was okay. You can't lie to the young ones, they never buy it. Dramatically, she tossed herself down next to me and groaned. "Me too," she said.
Her too? UGH! I had officially hit rock bottom. Nothing else that had happened to me up until that point had made me feel more like a loser: Not losing my marriage, not losing my best friend, not even hating myself and the constant wallow sessions in self pity. This new developement brought with it a whole new set of symptoms. I'm not talking about pain, although there was plenty, or fatique. I'm talking about guilt and its many facets. Guilt about my daughter imitating my pain and making me synonymous with it. Guilt about the kind of role model I was for her. Guilt over the realization that I had become a painful blob of self pity making excuses for my behavior by hiding behind my symptoms.
Well, no more!
I got up that day and exercised. I felt it for the next week but I kept going. I popped 3 advil every four hours for months. (A very bad idea, but it was all I had available at the time. My stomach now suffers.) I started researching everything I could, good and bad, and I tried everything I could, from hokey holistic to scientific treatments.
Some things worked, others didn't.
If we ever know anything about Fibromyalgia its that we don't know anything about Fibromyalgia. There are no 100% cures. There are no 100% days. But there can be 98% days! I'm living proof of that. And while I'm feeling these 98% days I'm going to use them to find out why I have Fibromyalgia, what I can do to beat it, and what we can do to prove it exists and get the treatment we need.
I plan to find out all about Fibro. Is it a syndrom? A condition? A behavioral problem?
The only thing I DO know about it, is that regardless of why it started, its with me now. Say what you will about the condition, it isn't going to hurt my feelings half as much as ignoring what I'm feeling will cause me pain.
Starting in March, I am going to put myself through doctors, and tests, and vitamin regiments to ever increase my "good days". To get rid of the symptoms that keep me homebound on bad days and I'm taking YOU with me.
I gave up.
And then I was rescued by someone small of stature but big on wisdom. Only she doesn't exactly know it.
My four year old daughter came into my room one morning and crawled into bed with me. She sighed and asked me if I was hurting. Of course I was, but I smiled and tried to tell her that mama was okay. You can't lie to the young ones, they never buy it. Dramatically, she tossed herself down next to me and groaned. "Me too," she said.
Her too? UGH! I had officially hit rock bottom. Nothing else that had happened to me up until that point had made me feel more like a loser: Not losing my marriage, not losing my best friend, not even hating myself and the constant wallow sessions in self pity. This new developement brought with it a whole new set of symptoms. I'm not talking about pain, although there was plenty, or fatique. I'm talking about guilt and its many facets. Guilt about my daughter imitating my pain and making me synonymous with it. Guilt about the kind of role model I was for her. Guilt over the realization that I had become a painful blob of self pity making excuses for my behavior by hiding behind my symptoms.
Well, no more!
I got up that day and exercised. I felt it for the next week but I kept going. I popped 3 advil every four hours for months. (A very bad idea, but it was all I had available at the time. My stomach now suffers.) I started researching everything I could, good and bad, and I tried everything I could, from hokey holistic to scientific treatments.
Some things worked, others didn't.
If we ever know anything about Fibromyalgia its that we don't know anything about Fibromyalgia. There are no 100% cures. There are no 100% days. But there can be 98% days! I'm living proof of that. And while I'm feeling these 98% days I'm going to use them to find out why I have Fibromyalgia, what I can do to beat it, and what we can do to prove it exists and get the treatment we need.
I plan to find out all about Fibro. Is it a syndrom? A condition? A behavioral problem?
The only thing I DO know about it, is that regardless of why it started, its with me now. Say what you will about the condition, it isn't going to hurt my feelings half as much as ignoring what I'm feeling will cause me pain.
Starting in March, I am going to put myself through doctors, and tests, and vitamin regiments to ever increase my "good days". To get rid of the symptoms that keep me homebound on bad days and I'm taking YOU with me.
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