I've been asked about the difference between tender points (A Fibro Thing) and trigger points (A Myofascial Thing).
I'm still doing some research on myofascial pain syndrome, which by the way 95% seem to have in addition to the tender points of Fibro. I'll give you the difference here today and a book I recommend to help take away some of the pain by self massage. It really is helpful.
Taken from The Trigger Point Therapy Workbook by Clair and Amber Davies:
"Myofascial pain is usually localized and its cause is very specific in the form of trigger points, whose extreme tenderness always reveals their location."
"Tender points are typically present almost everywhere and aren't limited to muscles. Fibromyalgia is believed to have a systemic cause, instead of something specific to the muscles, and the entire body is usually involved.
Muscles with trigger points feel firm; muscles of the fibromyalgia sufferer are soft and doughy. Muscles with trigger points stiffen the joints and inhibit your range of motion. In Fibromyalgia, the joints are loose or even hypermobile, although the person may have an overall subjective sense of stiffness and may be hesitant to move because of ongoing pain."
That's the easiest description I've read in my research so I thought I would share in hopes it will help with some of you.
The therapy book works on trigger points but sometimes can hurt more than hinder, at least for me. However, if I stay away from the tender points while massaging my trigger points, I actually feel a lot better. I use this for the arch of my foot and so far so good.
Just a suggestion for those of you who feel a lot of muscle pain. There are ways for you to massage yourself and save a couple bucks and who doesn't love saving money??
All my best,
Gin
Wednesday, March 11, 2009
Tuesday, March 10, 2009
Trigger Happy
(There are a lot of aspects of friends and relationships to cover but today I'm going to stick with friends and short tempers and bad advice.)
A while ago, I talked with a friend of mine about the subject of befriending a Fibro Sufferer (or Fibromite as I've seen us called lately. Makes me giggle.) and what it means exactly.
She, being relatively healthy, and me being in a Fibro remission state but technically "unhealthy", it was a good conversation where no one threw a single punch! It was awesome. It was also good for the soul.
I joke about not throwing a punch because if there is one thing I've noticed about Fibro Patients is that we are notoriously trigger happy. And by that I mean that we snap at the silliest and most innocent comments that someone makes about us or our condition.
Now, as a Fibro Patient who has had to carefully reel in her anger tendencies, I'm well aware of just how many times in a day I am close to biting someone's arm off and beating them with it. I'll be honest with you my friends, I have gone after many a man or woman who did not deserve my violent attentions and in hindsight I realize that its very possible my fibro might have played a role in getting me past the boiling point and jumping in the fire.
Even now, as much as I would love to pretend I'm above such things, there are day where I have to take long showers and walks outside...and the gods help anyone I meet on the street that looks at me funny.
I'm not the only one like this. I've seen it for many years. Not all of us, but a good portion of us are a bunch of short-fused bombs.
Throw in a little bit of bad advice? And friends who were at one time close with us...can sadly be lost.
That isn't to say we're wrong every time we get mad. If someone who knows better than to suggest to us to take a couple of advil or rub Icy Hot on our legs and back, still suggests it in a manner that is insulting by all means punch 'em! (Just kidding!) Actually, those who mock your pain are not friends. Those who tell you every day that you need a few pills and you'll be right as rain every time you try to talk to them about how you're feeling?? They need to step down the ladder from friend to someone you talk to when you run into them and nothing more.
However, it is important that while we're talking about bad advice that we keep something in mind. We're hot heads. We sometimes don't realize we expect everyone to just shut up and listen to our list of aches and pains and how horrible things are for us today...this week...this month...this year. This is a slight exaggeration on my part...but can be how our friends view us.
But be careful. The need to constantly bend the ears of our friends may make them just as quick to snap over all the negativity as we are when they tell us we should take some aspirin and get a massage.
Sometimes our friends really are trying to help. For example: As mine said to me months ago... "Maybe you should try some advil."
My response?
"Advil? You're kidding right? Yeah.. I'll get right on that, and while the overdosing of advil chews away at my stomach and makes me run to the bathroom every time I eat something heavier than broth, I can think about how glad I am that I took something that can't possibly do anything for me and is keeping me from taking a legitimate pill because I broke the first "newb" rule of treating Fibro which is don't take advice about pain from someone who doesn't know pain!"
Okay that isn't verbatim but I hit all the "high" points of my rant. Needless to say the silence that followed made me wanna swallow my tongue. Hence the conversation about what is helpful and what isn't.
My friend told me this: "I know I don't know what you're going through, and I have no idea how to help you but to sit here and just nod my head makes me feel weak. You tell me you're in pain and how can I just say nothing? It's like when your spouse stands up from the dinner table and to use the bathroom and you ask them 'where you going?'. It's a stupid question but you say it anyway. I'm sick of feeling helpless when you sound like you're giving up or having a bad day. I have to say something!"
So, here I am, the Queen B*tch, sitting on my throne sucking on lemons.
When did I get so bitter? It was another deciding factor in my effort to get positive and keep my life moving forward into the light instead of the darkness of depression.
We had a better understanding of each other and now *I* have a few guidelines I use for friends I have or will make:
-I always make sure everyone I meet knows that I have Fibromyalgia. Some people look at me weird for "sharing" intimate knowledge but it's all in how you do it. "I'm sorry, I have a condition that makes me a little foggy sometimes. You may have to remind me of your name once or twice." Simple, without making the other person uncomfortable by saying "I have fibromyalgia, I hurt all the time so standing here talking to you is taxing and I probably won't remember your name either." LOL.. It took me a bit of practice to be diplomatic and not blunt.
-I promise not to break engagements over every little bit of pain I experience but when I'm really hurting...all plans are broken without attitude!
-I don't complain about pain in front of my friends unless I can't move or need assistance. It's okay to unleash but the more we do the more helpless our friends feel. Some friends don't mind... complain away but remember...some friends will also say they don't mind if you rant to them but over months or years start to distance themselves. As my sister constantly reminds me about one of her friends "He's never happy when I talk to him. I want to be there for him but its too much. I get depressed just talking to him anymore." Make sure this isn't you.
-I make a huge effort not to take advantage of anyone who listens well and I refuse to get into a pain debate (point counter-point style). You know the type. You say you're in pain and they have an answer for how you can fix it, you mention you have a headache too and they talk about how massages in the neck are "scientifically proven" to make a difference.. etc. Don't do it! lol.. It'll bring out the beast!
-I make sure that I ask how all of my friends are doing and what they are up to. When in pain and depressed it is really hard to remember that your friends might have something going on in their life too that they won't mention to you. They might feel as if it is inconsequential compared to your pain or that you'll view it that way and they'll stop thinking of you as a friend that they can turn to.
Again these are MY personal guidelines and everyone needs to make their own. Find out where your short-comings might be and save yourself from losing a few friends by making changes or amends. Know the difference between condescending jerks, a frustrated "feeling helpless" friend.
And most of all...easy on the trigger!! This goes double for me. :)
My best wishes for 98% days,
Gin
A while ago, I talked with a friend of mine about the subject of befriending a Fibro Sufferer (or Fibromite as I've seen us called lately. Makes me giggle.) and what it means exactly.
She, being relatively healthy, and me being in a Fibro remission state but technically "unhealthy", it was a good conversation where no one threw a single punch! It was awesome. It was also good for the soul.
I joke about not throwing a punch because if there is one thing I've noticed about Fibro Patients is that we are notoriously trigger happy. And by that I mean that we snap at the silliest and most innocent comments that someone makes about us or our condition.
Now, as a Fibro Patient who has had to carefully reel in her anger tendencies, I'm well aware of just how many times in a day I am close to biting someone's arm off and beating them with it. I'll be honest with you my friends, I have gone after many a man or woman who did not deserve my violent attentions and in hindsight I realize that its very possible my fibro might have played a role in getting me past the boiling point and jumping in the fire.
Even now, as much as I would love to pretend I'm above such things, there are day where I have to take long showers and walks outside...and the gods help anyone I meet on the street that looks at me funny.
I'm not the only one like this. I've seen it for many years. Not all of us, but a good portion of us are a bunch of short-fused bombs.
Throw in a little bit of bad advice? And friends who were at one time close with us...can sadly be lost.
That isn't to say we're wrong every time we get mad. If someone who knows better than to suggest to us to take a couple of advil or rub Icy Hot on our legs and back, still suggests it in a manner that is insulting by all means punch 'em! (Just kidding!) Actually, those who mock your pain are not friends. Those who tell you every day that you need a few pills and you'll be right as rain every time you try to talk to them about how you're feeling?? They need to step down the ladder from friend to someone you talk to when you run into them and nothing more.
However, it is important that while we're talking about bad advice that we keep something in mind. We're hot heads. We sometimes don't realize we expect everyone to just shut up and listen to our list of aches and pains and how horrible things are for us today...this week...this month...this year. This is a slight exaggeration on my part...but can be how our friends view us.
But be careful. The need to constantly bend the ears of our friends may make them just as quick to snap over all the negativity as we are when they tell us we should take some aspirin and get a massage.
Sometimes our friends really are trying to help. For example: As mine said to me months ago... "Maybe you should try some advil."
My response?
"Advil? You're kidding right? Yeah.. I'll get right on that, and while the overdosing of advil chews away at my stomach and makes me run to the bathroom every time I eat something heavier than broth, I can think about how glad I am that I took something that can't possibly do anything for me and is keeping me from taking a legitimate pill because I broke the first "newb" rule of treating Fibro which is don't take advice about pain from someone who doesn't know pain!"
Okay that isn't verbatim but I hit all the "high" points of my rant. Needless to say the silence that followed made me wanna swallow my tongue. Hence the conversation about what is helpful and what isn't.
My friend told me this: "I know I don't know what you're going through, and I have no idea how to help you but to sit here and just nod my head makes me feel weak. You tell me you're in pain and how can I just say nothing? It's like when your spouse stands up from the dinner table and to use the bathroom and you ask them 'where you going?'. It's a stupid question but you say it anyway. I'm sick of feeling helpless when you sound like you're giving up or having a bad day. I have to say something!"
So, here I am, the Queen B*tch, sitting on my throne sucking on lemons.
When did I get so bitter? It was another deciding factor in my effort to get positive and keep my life moving forward into the light instead of the darkness of depression.
We had a better understanding of each other and now *I* have a few guidelines I use for friends I have or will make:
-I always make sure everyone I meet knows that I have Fibromyalgia. Some people look at me weird for "sharing" intimate knowledge but it's all in how you do it. "I'm sorry, I have a condition that makes me a little foggy sometimes. You may have to remind me of your name once or twice." Simple, without making the other person uncomfortable by saying "I have fibromyalgia, I hurt all the time so standing here talking to you is taxing and I probably won't remember your name either." LOL.. It took me a bit of practice to be diplomatic and not blunt.
-I promise not to break engagements over every little bit of pain I experience but when I'm really hurting...all plans are broken without attitude!
-I don't complain about pain in front of my friends unless I can't move or need assistance. It's okay to unleash but the more we do the more helpless our friends feel. Some friends don't mind... complain away but remember...some friends will also say they don't mind if you rant to them but over months or years start to distance themselves. As my sister constantly reminds me about one of her friends "He's never happy when I talk to him. I want to be there for him but its too much. I get depressed just talking to him anymore." Make sure this isn't you.
-I make a huge effort not to take advantage of anyone who listens well and I refuse to get into a pain debate (point counter-point style). You know the type. You say you're in pain and they have an answer for how you can fix it, you mention you have a headache too and they talk about how massages in the neck are "scientifically proven" to make a difference.. etc. Don't do it! lol.. It'll bring out the beast!
-I make sure that I ask how all of my friends are doing and what they are up to. When in pain and depressed it is really hard to remember that your friends might have something going on in their life too that they won't mention to you. They might feel as if it is inconsequential compared to your pain or that you'll view it that way and they'll stop thinking of you as a friend that they can turn to.
Again these are MY personal guidelines and everyone needs to make their own. Find out where your short-comings might be and save yourself from losing a few friends by making changes or amends. Know the difference between condescending jerks, a frustrated "feeling helpless" friend.
And most of all...easy on the trigger!! This goes double for me. :)
My best wishes for 98% days,
Gin
Saturday, March 7, 2009
Meet Amy Marino
Throughout my blogging I will be introducing a few Fibro Patients. They have answered a questionnaire for me and have been kind enough to allow me to post it to the blog.
What's the purpose of this?
Some of the stories will inspire you, some will sound all too familiar and in that familiarity we can see where we hit the walls that keep us from pushing ourselves. The more we encourage and support each other the greater the chance we can rise above what hurts us.
The interviews range from positive fibro fighters to those who just plug away every day trying to survive the pain who truly want to better themselves but need a little more inspiration. In all cases, each patient is deserving of our respect and understanding and I humbly thank those who have shared their stories with me.
Now I'd like to introduce Ms. Amy Marino.
Gin: When do you believe you first had Fibromyalgia and why?
Amy Marino: I believe I started showing signs in 2003 or 2004, when I was diagnosed with EBV. But I didn't know what to think, since I led a very busy life at the time.
Gin: What steps did you have to go through in order to be diagnosed?
A.M.: I was persistent, and was at the doctor often, getting a lot of tests done.
Gin: Do you have any secondary conditions?
A.M.: I am asthmatic, and I do have the CFIDS.
Gin: What medications are you currently taking and why?
A.M.: Lexapro, for the anxiety that comes with this condition, Flexeril to help with pain and sleep, and Seroquel, to help with the sleep.
Gin: Side Effects?
A.M.: One of the side effects I get is increased appetite. Also, drowsiness occurs, which honestly, I don't mind, but I don't like the dizziness.
Gin: Dramatic results?
A.M.: No dramatic results. I do have energy to do things, but when I crash, it's a hard crash.
Gin: What vitamins are you taking? Supplements? Homeopathic remedies?
A.M.: None. (Gin Note: GASP. Let’s get some Vitamins in you!)
Gin: What impact did your diagnosis have on your life?
A.M.: I finally know that there is something wrong with me. (Gin Note: Great answer. Because now that you know, you have something to fight!)
Gin: Has Fibromyalgia forced unwanted lifestyle changes?
A.M.: I am unable to stay up late, and I am forced to use caffeine if I need to function for a long period, like at work.
Gin: Has Fibro caused marital or familial strife?
A.M.: I do have a friend who doubts me having it. It's made flareups hell, and I am scared to talk about it when he is around. And me and my fiance are not able to have as much fun as we'd like to.
Gin: What are you doing for yourself to aid your condition?
A.M.: I have a routine, and I stick to it as much as I can, and I try not to make unnecessary changes to it.
Gin: Do you find yourself making excuses for your lack of ambition?
A.M.: Yes. I will always say that I can't handle it when people ask why I don't go to school. But right now, I feel I am not really making excuses, it's the truth.
Gin: Do you truly feel in your heart you’re doing all that you can to promote your own personal health?
A.M.: Not enough. I don't exercise as much as I want or should, but I am always too tired. And my diet is not the greatest. I don't know how to take it easy.
Gin: What steps are you taking to push yourself?
A.M.: I don't push myself, but I try to do the best I can.
Gin: Is there something you wish to try but you’re unsure of the legitimacy?
A.M.: I feel I am taking on all I can right now.
Gin: What are your future health plans?
A.M.: To try and have a better overall health.
Gin: What inspires you into motivation?
A.M.: The fact that I am engaged and I want to get married and stop putting him through my crappy life.
Gin: Thank you so much Amy, for sharing your story with us.
Overview: (What I feel we can learn from the interview. Feel free to add a comment as to what you learned as well.)
Amy's interview as a perfect first interview because she was succinct and honest. She didn't tell me that she was doing all she could for herself, just that she was doing what she felt she could handle. There is a safety net there for her, a comfort zone, and we all have it. Myself included. However, in order to fight fibro to the fullest we have to slide out of that comfort zone often and push, push! It comes in time and with motivation, which starting a new life as a wife can do for Amy.
Amy's story is inspirational because written out you can see where her fight is just starting and there are ways to improve it. She has energy, which we all know is a huge step in fibro, and if she starts taking some vitamins, she can only improve. B-12, Vitamin D, Magnesium... Give them a shot Amy!
The only disturbing element to this interview that I found, was the fear of talking about her condition near a skeptic friend. This is all too common, and it drives me crazy. Don't let one person who will attack you on every point, make you turtle your emotions and hide your condition. My suggestion is to get a pamphlet on Fibromyalgia, tuck it in your purse, and the moment he/she comes at you with their parroted misinformation you slap that pamphlet against their chest and say "get educated before you come up against me".
Don't let anyone! make you feel you're an "attention seeker" or that Fibromyalgia is all in your head. Sometimes we have to tone down our open complaints, because lets face it, people hate a repetitive sob story if it isn't theirs. But that doesn't mean we have to hide what we have. Your Fibro is real, and so is your determination to fight it! Good luck!
Again I'd like to thank Amy for sharing with me, and now with us.
Take Care my friends,
All my best wishes,
Gin
What's the purpose of this?
Some of the stories will inspire you, some will sound all too familiar and in that familiarity we can see where we hit the walls that keep us from pushing ourselves. The more we encourage and support each other the greater the chance we can rise above what hurts us.
The interviews range from positive fibro fighters to those who just plug away every day trying to survive the pain who truly want to better themselves but need a little more inspiration. In all cases, each patient is deserving of our respect and understanding and I humbly thank those who have shared their stories with me.
Now I'd like to introduce Ms. Amy Marino.
Gin: When do you believe you first had Fibromyalgia and why?
Amy Marino: I believe I started showing signs in 2003 or 2004, when I was diagnosed with EBV. But I didn't know what to think, since I led a very busy life at the time.
Gin: What steps did you have to go through in order to be diagnosed?
A.M.: I was persistent, and was at the doctor often, getting a lot of tests done.
Gin: Do you have any secondary conditions?
A.M.: I am asthmatic, and I do have the CFIDS.
Gin: What medications are you currently taking and why?
A.M.: Lexapro, for the anxiety that comes with this condition, Flexeril to help with pain and sleep, and Seroquel, to help with the sleep.
Gin: Side Effects?
A.M.: One of the side effects I get is increased appetite. Also, drowsiness occurs, which honestly, I don't mind, but I don't like the dizziness.
Gin: Dramatic results?
A.M.: No dramatic results. I do have energy to do things, but when I crash, it's a hard crash.
Gin: What vitamins are you taking? Supplements? Homeopathic remedies?
A.M.: None. (Gin Note: GASP. Let’s get some Vitamins in you!)
Gin: What impact did your diagnosis have on your life?
A.M.: I finally know that there is something wrong with me. (Gin Note: Great answer. Because now that you know, you have something to fight!)
Gin: Has Fibromyalgia forced unwanted lifestyle changes?
A.M.: I am unable to stay up late, and I am forced to use caffeine if I need to function for a long period, like at work.
Gin: Has Fibro caused marital or familial strife?
A.M.: I do have a friend who doubts me having it. It's made flareups hell, and I am scared to talk about it when he is around. And me and my fiance are not able to have as much fun as we'd like to.
Gin: What are you doing for yourself to aid your condition?
A.M.: I have a routine, and I stick to it as much as I can, and I try not to make unnecessary changes to it.
Gin: Do you find yourself making excuses for your lack of ambition?
A.M.: Yes. I will always say that I can't handle it when people ask why I don't go to school. But right now, I feel I am not really making excuses, it's the truth.
Gin: Do you truly feel in your heart you’re doing all that you can to promote your own personal health?
A.M.: Not enough. I don't exercise as much as I want or should, but I am always too tired. And my diet is not the greatest. I don't know how to take it easy.
Gin: What steps are you taking to push yourself?
A.M.: I don't push myself, but I try to do the best I can.
Gin: Is there something you wish to try but you’re unsure of the legitimacy?
A.M.: I feel I am taking on all I can right now.
Gin: What are your future health plans?
A.M.: To try and have a better overall health.
Gin: What inspires you into motivation?
A.M.: The fact that I am engaged and I want to get married and stop putting him through my crappy life.
Gin: Thank you so much Amy, for sharing your story with us.
Overview: (What I feel we can learn from the interview. Feel free to add a comment as to what you learned as well.)
Amy's interview as a perfect first interview because she was succinct and honest. She didn't tell me that she was doing all she could for herself, just that she was doing what she felt she could handle. There is a safety net there for her, a comfort zone, and we all have it. Myself included. However, in order to fight fibro to the fullest we have to slide out of that comfort zone often and push, push! It comes in time and with motivation, which starting a new life as a wife can do for Amy.
Amy's story is inspirational because written out you can see where her fight is just starting and there are ways to improve it. She has energy, which we all know is a huge step in fibro, and if she starts taking some vitamins, she can only improve. B-12, Vitamin D, Magnesium... Give them a shot Amy!
The only disturbing element to this interview that I found, was the fear of talking about her condition near a skeptic friend. This is all too common, and it drives me crazy. Don't let one person who will attack you on every point, make you turtle your emotions and hide your condition. My suggestion is to get a pamphlet on Fibromyalgia, tuck it in your purse, and the moment he/she comes at you with their parroted misinformation you slap that pamphlet against their chest and say "get educated before you come up against me".
Don't let anyone! make you feel you're an "attention seeker" or that Fibromyalgia is all in your head. Sometimes we have to tone down our open complaints, because lets face it, people hate a repetitive sob story if it isn't theirs. But that doesn't mean we have to hide what we have. Your Fibro is real, and so is your determination to fight it! Good luck!
Again I'd like to thank Amy for sharing with me, and now with us.
Take Care my friends,
All my best wishes,
Gin
Thursday, March 5, 2009
Know Thyself.
One of the biggest problems we, as Fibro Patients, have is our lacking in knowledge of ourselves and often our condition. Okay so our condition isn't even known to the medical community really, so granted we're at a severe disadvantage. But there is a lot we can do without the scientific knowledge.
We have to work on instinct and personal observation. If no one else is equipped to help us we MUST help ourselves.
For the energy quiz, the tally was as follows---Well it doesn't matter because we all had it wrong! Myself included. Haha! I was disturbed, however, by the 17% that said they never pay attention to the circumstances of their energy.
Because of Fibro, we have to know everything about our body. We're all different. We all experience different symptoms at different stages. We can't just read blogs and message boards and support groups to relate to others so that we feel secure in a symptom. (Although that's a HUGE plus.)
We have to know ourselves. Every symptom, every day, should be documented. At least every day that you experience new or rare symptoms. We have to try to find a pattern within ourselves so that we can sense when we're lacking or when we need the most help.
It's really...really hard to do and to maintain. A pain journal or symptom journal or food journal...etc. But it can be done. And in that journal you need to realize what is sapping your energy the most.
Write down the routine for your morning and rate your energy as it slips and as it rises. See what helps you and what hinders you and make even slight adjustments.
I used to wake up okay.. and try to squeeze everything I needed to do for the day before I ate because I knew that once I ate...the digestion process would slow me down to a crawl. There were times when my first meal was at 6-7 p.m.
That habit made it to where I was squeezing in three meals in one or worse, staying up until 5 a.m. Thus my horrid circle went for 20 years...and it's not much different right now. However... I changed a bit.
I started eating such small "meals" that my digestion didn't sap me. I just ate more of them. My energy increased. I also added some D-Ribose and some Acai Berry powder...took some probiotics to help regulate my bowel and of course.. take vitamins daily. Especially B-12. It's the boost we all need. Make sure you're taking it!
Energy is the most important part of Fibro, because without it we lay around a lot. Our muscles get worse without exercise, our pain creeps up because of lack of movement and depression and the vicious cycle continues over and over.
Power naps are also a very helpful way of re energizing. Don't fight your body, make peace with it by compromising when you can. 45 minute naps that you make yourself rise from!
It takes very little to sap our energy so we have to actively fight to keep it. It is why you will often hear me snarl when I hear of Lyrica. Not because I think it doesn't work at all. People swear it helps them even though it doesn't cure them and whatever helps...I wouldn't begrudge anyone. HOWEVER, it also promotes weight gain. When we weigh more we're less likely to move around as much as we need to, to produce energy. Weight gain also means... more depression, which of course Lyrica helps to disguise until one day, you wake up and catch a glimpse in the mirror or hear a snide "fat" comment from some wench behind a Rite Aid counter!! (lol... okay bitter memories now.)
You have no idea how many women I hear who are crushed by the drug. ("I weigh so much now. I can't exercise and I can't get any energy from the added weight to get up and exercise. Help!") It makes me so angry! I've suggested topamax instead of Lyrica sometimes but it's hard for me to do that since Topamax and I did not get along. It does, however, make you lose weight and can help with migraine headaches. (Topamax is a sister med to Lyrica that makes you lose on average 30-40 lbs) Others swear by diets I like to call the "diarrhea diets" because really...you lose weight by giving yourself IBS. (Cabbage soup diet... Acai Berry mixed with a colon cleanse. etc)
Bottom line for me is this...we make energy in the bowel, therefore, the bowel must be healthy and producing the energy we need. Change comfort foods that you know are bad to mostly healthy. I say mostly because cutting out everything can lead to horrible junk food cravings that have you snapping off and purging. One step at a time is all we can do.
Summary:
Make a symptom journal. Know when and where your body suffers so you can counter-attack. Perhaps even preemptively.
Make an energy journal. Notice what times of the day your energy is lacking. Time your B-12 ingestion around that.
Give a little...take a lot. Power naps can help. You might feel like crap right after, but once you get moving you'll notice a little perk. We live for those little perks. Take advantage.
Take care of your bowel. It is the energy maker. Treat it well and it will do more for you. During bad bouts of IBS this is a bit more of a challenge but push through it. Find what binds! lol
Plenty of good rest, exercise, healthy digestion, Vitamin B-12 or B complex, D-Ribose, Acai berry (used carefully)...these things have worked for me. Let me know if you have found something else that has worked for you!
And as always,
Keep fighting the good fight,
All my best,
Gin
We have to work on instinct and personal observation. If no one else is equipped to help us we MUST help ourselves.
For the energy quiz, the tally was as follows---Well it doesn't matter because we all had it wrong! Myself included. Haha! I was disturbed, however, by the 17% that said they never pay attention to the circumstances of their energy.
Because of Fibro, we have to know everything about our body. We're all different. We all experience different symptoms at different stages. We can't just read blogs and message boards and support groups to relate to others so that we feel secure in a symptom. (Although that's a HUGE plus.)
We have to know ourselves. Every symptom, every day, should be documented. At least every day that you experience new or rare symptoms. We have to try to find a pattern within ourselves so that we can sense when we're lacking or when we need the most help.
It's really...really hard to do and to maintain. A pain journal or symptom journal or food journal...etc. But it can be done. And in that journal you need to realize what is sapping your energy the most.
Write down the routine for your morning and rate your energy as it slips and as it rises. See what helps you and what hinders you and make even slight adjustments.
I used to wake up okay.. and try to squeeze everything I needed to do for the day before I ate because I knew that once I ate...the digestion process would slow me down to a crawl. There were times when my first meal was at 6-7 p.m.
That habit made it to where I was squeezing in three meals in one or worse, staying up until 5 a.m. Thus my horrid circle went for 20 years...and it's not much different right now. However... I changed a bit.
I started eating such small "meals" that my digestion didn't sap me. I just ate more of them. My energy increased. I also added some D-Ribose and some Acai Berry powder...took some probiotics to help regulate my bowel and of course.. take vitamins daily. Especially B-12. It's the boost we all need. Make sure you're taking it!
Energy is the most important part of Fibro, because without it we lay around a lot. Our muscles get worse without exercise, our pain creeps up because of lack of movement and depression and the vicious cycle continues over and over.
Power naps are also a very helpful way of re energizing. Don't fight your body, make peace with it by compromising when you can. 45 minute naps that you make yourself rise from!
It takes very little to sap our energy so we have to actively fight to keep it. It is why you will often hear me snarl when I hear of Lyrica. Not because I think it doesn't work at all. People swear it helps them even though it doesn't cure them and whatever helps...I wouldn't begrudge anyone. HOWEVER, it also promotes weight gain. When we weigh more we're less likely to move around as much as we need to, to produce energy. Weight gain also means... more depression, which of course Lyrica helps to disguise until one day, you wake up and catch a glimpse in the mirror or hear a snide "fat" comment from some wench behind a Rite Aid counter!! (lol... okay bitter memories now.)
You have no idea how many women I hear who are crushed by the drug. ("I weigh so much now. I can't exercise and I can't get any energy from the added weight to get up and exercise. Help!") It makes me so angry! I've suggested topamax instead of Lyrica sometimes but it's hard for me to do that since Topamax and I did not get along. It does, however, make you lose weight and can help with migraine headaches. (Topamax is a sister med to Lyrica that makes you lose on average 30-40 lbs) Others swear by diets I like to call the "diarrhea diets" because really...you lose weight by giving yourself IBS. (Cabbage soup diet... Acai Berry mixed with a colon cleanse. etc)
Bottom line for me is this...we make energy in the bowel, therefore, the bowel must be healthy and producing the energy we need. Change comfort foods that you know are bad to mostly healthy. I say mostly because cutting out everything can lead to horrible junk food cravings that have you snapping off and purging. One step at a time is all we can do.
Summary:
Make a symptom journal. Know when and where your body suffers so you can counter-attack. Perhaps even preemptively.
Make an energy journal. Notice what times of the day your energy is lacking. Time your B-12 ingestion around that.
Give a little...take a lot. Power naps can help. You might feel like crap right after, but once you get moving you'll notice a little perk. We live for those little perks. Take advantage.
Take care of your bowel. It is the energy maker. Treat it well and it will do more for you. During bad bouts of IBS this is a bit more of a challenge but push through it. Find what binds! lol
Plenty of good rest, exercise, healthy digestion, Vitamin B-12 or B complex, D-Ribose, Acai berry (used carefully)...these things have worked for me. Let me know if you have found something else that has worked for you!
And as always,
Keep fighting the good fight,
All my best,
Gin
Tuesday, March 3, 2009
Chest Pain Panic!
I was going to talk about energy today but I've noticed on a few sites the topic of conversation has seemed to be chest pains. And considering I received an email question about it as well, I figured I'd put energy off a day in lieu of chest pains. Which is, by far, a more scarier subject.
I'm 34 years old. My family history with heart attacks is obnoxious. My mother, who is 55, is the last remaining member of her family. It's weird. Growing up, most of the kids I knew in school never had a family member pass away...or if they did, they had a grand parent go. Throughout my school years and into adulthood, I was surrounded by death. I thought it was "normal" to have a funeral home on speed dial and they used to give us family discounts.
Uncle Art was first, Aunt Betty, then my Uncle Butch (45 years old), my uncle Wilbert, my grandmother, my grandfather, and lastly my Uncle Bob. All heart attack deaths.
So when I started to feel chest pains. I FREAKED!! lol. We all do it. Whenever we get any pain it seems our first reaction is always the worst. I'm infamous with this. My sternum hurt...I was sure I was going to be told I had lung cancer. My foot hurt, I waited for my foot doctor to tell me he needed to amputate.
It reminds me of the movie My Girl, where the daughter of a mortician always thought she had the condition her father's newest client had died from.
As Fibro Patients we expect the worse because, as I always used to say to Dan, "No one can feel this much pain and not be dying".
Oh yeah...The Old Gin was not a very positive person. Haha!
So what about all this chest pain? What the hell is it? And how can I tell the difference between heart attacks and benign chest pain?
In my case it is reoccurring costochondritis. Yippy! And the best way to tell that its my costo and not a heart attack is by moving for me. If I can feel the sharp pain by moving, make it worsen, then its not a heart attack. A true heart attack can not be aggravated. It is what it is!
I was searching for information about different conditions chest pain could be and found a very simple and detailed article on the Queens University website:
http://meds.queensu.ca/capre/chestpains/reading.html
Check it out, give it a read and then research the conditions. Because Costocondritis is my specialty (yay me!) I'll give you a quick overview of the symptoms:
Heart attack symptoms such as pain in the chest, sensitivity/pain in sternum (A tender point for fibro patients anyway...weee), difficulty breathing.
Difficulty breathing is a tricky one because it is not a good symptom to diagnose Costochondritis. If there is no pain, the difficulty breathing is more likely a "fibro thing" or perhaps a bad allergic reaction or possibly asthma related. Costochondritis is all about the pain, baby! Fun fun.
Now here's where I'm uncertain of things and I'll report back once I know more about it. My costo comes and goes. Sometimes within hours so I don't treat it just like I don't seek treatment for the ache in the arch of my foot. I used to get cortisone shots in my foot but it did...nothing. I still got the ache every day...because of Fibro.
So...here's my thought. Do I really have Costochondritis or does Fibro just mimic this syndrome as well? Is my ribcage really inflamed or does it just feel that way? Hopefully I'll have that answer soon.
When in doubt, my friends... go to the hospital. Chest pains are nothing to fool around with!
All my best,
Gin
I'm 34 years old. My family history with heart attacks is obnoxious. My mother, who is 55, is the last remaining member of her family. It's weird. Growing up, most of the kids I knew in school never had a family member pass away...or if they did, they had a grand parent go. Throughout my school years and into adulthood, I was surrounded by death. I thought it was "normal" to have a funeral home on speed dial and they used to give us family discounts.
Uncle Art was first, Aunt Betty, then my Uncle Butch (45 years old), my uncle Wilbert, my grandmother, my grandfather, and lastly my Uncle Bob. All heart attack deaths.
So when I started to feel chest pains. I FREAKED!! lol. We all do it. Whenever we get any pain it seems our first reaction is always the worst. I'm infamous with this. My sternum hurt...I was sure I was going to be told I had lung cancer. My foot hurt, I waited for my foot doctor to tell me he needed to amputate.
It reminds me of the movie My Girl, where the daughter of a mortician always thought she had the condition her father's newest client had died from.
As Fibro Patients we expect the worse because, as I always used to say to Dan, "No one can feel this much pain and not be dying".
Oh yeah...The Old Gin was not a very positive person. Haha!
So what about all this chest pain? What the hell is it? And how can I tell the difference between heart attacks and benign chest pain?
In my case it is reoccurring costochondritis. Yippy! And the best way to tell that its my costo and not a heart attack is by moving for me. If I can feel the sharp pain by moving, make it worsen, then its not a heart attack. A true heart attack can not be aggravated. It is what it is!
I was searching for information about different conditions chest pain could be and found a very simple and detailed article on the Queens University website:
http://meds.queensu.ca/capre/chestpains/reading.html
Check it out, give it a read and then research the conditions. Because Costocondritis is my specialty (yay me!) I'll give you a quick overview of the symptoms:
Heart attack symptoms such as pain in the chest, sensitivity/pain in sternum (A tender point for fibro patients anyway...weee), difficulty breathing.
Difficulty breathing is a tricky one because it is not a good symptom to diagnose Costochondritis. If there is no pain, the difficulty breathing is more likely a "fibro thing" or perhaps a bad allergic reaction or possibly asthma related. Costochondritis is all about the pain, baby! Fun fun.
Now here's where I'm uncertain of things and I'll report back once I know more about it. My costo comes and goes. Sometimes within hours so I don't treat it just like I don't seek treatment for the ache in the arch of my foot. I used to get cortisone shots in my foot but it did...nothing. I still got the ache every day...because of Fibro.
So...here's my thought. Do I really have Costochondritis or does Fibro just mimic this syndrome as well? Is my ribcage really inflamed or does it just feel that way? Hopefully I'll have that answer soon.
When in doubt, my friends... go to the hospital. Chest pains are nothing to fool around with!
All my best,
Gin
Monday, March 2, 2009
Upcoming In March!
It's an exciting and busy time for me, so I've stopped posting on some of my favorite loops and sites while I get cracking on things I have to do! But that doesn't stop the fight for me. I'll continue here and through email while going through edits and other fun publishing stuff!
So here's what you can expect from the blog in March.
I'm going to discuss energy and the lack-thereof and search for new ways to keep our body and mind going.
I've got a new poll on medication I'm going to put up.
I'm going to post some interviews with Fibro Sufferers/Plus Sufferers about their Fibro in hopes of finding common links and bringing awareness. (If interested in being interview send a brief summary of how long you've had Fibro and how you were diagnosed to Fibrohelper@gmail.com)
I'm going to put a special focus on spouses and significant others! Perhaps do spouse interviews and family and friends. We'll see how the first interviews go and the interest, if any, it generates.
This month I will be setting up another blog for the Fibro websites I've been asked to review. Outing the Scams Touting the Good.
These among other great things are coming. I don't want to tell all until I can confirm but TheFibroFight is coming along so well.
I appreciate all of you who follow the blog and support me in my endeavor to fight off more Fibro Flare-Ups!
As always, we can do this together!
My best,
Gin
So here's what you can expect from the blog in March.
I'm going to discuss energy and the lack-thereof and search for new ways to keep our body and mind going.
I've got a new poll on medication I'm going to put up.
I'm going to post some interviews with Fibro Sufferers/Plus Sufferers about their Fibro in hopes of finding common links and bringing awareness. (If interested in being interview send a brief summary of how long you've had Fibro and how you were diagnosed to Fibrohelper@gmail.com)
I'm going to put a special focus on spouses and significant others! Perhaps do spouse interviews and family and friends. We'll see how the first interviews go and the interest, if any, it generates.
This month I will be setting up another blog for the Fibro websites I've been asked to review. Outing the Scams Touting the Good.
These among other great things are coming. I don't want to tell all until I can confirm but TheFibroFight is coming along so well.
I appreciate all of you who follow the blog and support me in my endeavor to fight off more Fibro Flare-Ups!
As always, we can do this together!
My best,
Gin
Sunday, March 1, 2009
The Negatives About Being Positive.
I was talking with a friend of mine not long ago about Fibro. She and I both have it and she and I both absolutely hated the negativity surrounding the syndrome whether it was from the medical community and society or from Fibro Sufferers themselves.
We dreamed of a perfect world where Doctors and families understood our pain and where Fibro Sufferers fought against the Syndrome with all they had, helping credibility and raise awareness for this very real and agonizing condition.
We were both tired of going to the same groups, blogs, websites where everything was bleak. Stories were shared and relating was had. It was nice to see, but more often than not, it became darker...gloomier. Pain stories and laments about life sucking so much was all we saw on some threads and email loops! It was...depressing.
I bet someone could do a study out there about support groups, whether they help or hurt and the results would be shocking.
So how to turn that around?
Shoot a bit of positive in the mix and see what happens.
Well I can tell you what happens. Rejection mostly. LOL Oh I'm not saying I'm going to stop being positive. It's not in my nature. I'm not even going to complain about the personal attacks or the hate emails.
I've been told I'm preachy, insensitive, a bitch, and accusations have been made as to whether or not I suffer from Fibro at all. I try to deflect these images of me as best I can but the truth is, you can't force people to want to find good in their life when they're determined to feel bad. In fact, when you DO try, and sometimes I admit I try too hard, you become the object of hate and ridicule. Enemy Number One.
Reminding people that there is good out there and they can feel it is an awesome job, but not so awesome when you see the frustration and anger you can bring out in people.
Maybe I'm hated because they really are trying and they can't get to the 98% place yet. They don't believe it's ever coming and for me to continue to say it is possible angers them on the days they're at 2%.
That's how I choose to look at it. Anger and frustration. And boy do I understand that. I wouldn't like me either on those days! It's like the cheerleaders trying to get you interested in a game when you're down 50 pts with two minutes left. Its just not happening.
I get it. But just like the cheerleaders, I'm not going to give up.
I have to be positive because I know good health and good days are possible. I feel confident that in the future we'll only have more understanding and awareness.. and more treatments! I have faith.
I don't want anyone to feel as though their life is over and they can't find anything worth living for. Gods I will argue with anyone, piss off the world if I can just convince one person with Fibro not to give up.
I'm not saying this to martyr myself or to be preachy dammit. It is just how I feel. So many people, my friends...they all are just...teetering, looking for something to make them whole again. And until you hear the cries of many you just can't know the kind of pressure being positive can bring and why I can NEVER waiver on it or let others shut me down.
I will be here. I will be annoyingly positive... and I care deeply about you all.
All my best,
Gin
We dreamed of a perfect world where Doctors and families understood our pain and where Fibro Sufferers fought against the Syndrome with all they had, helping credibility and raise awareness for this very real and agonizing condition.
We were both tired of going to the same groups, blogs, websites where everything was bleak. Stories were shared and relating was had. It was nice to see, but more often than not, it became darker...gloomier. Pain stories and laments about life sucking so much was all we saw on some threads and email loops! It was...depressing.
I bet someone could do a study out there about support groups, whether they help or hurt and the results would be shocking.
So how to turn that around?
Shoot a bit of positive in the mix and see what happens.
Well I can tell you what happens. Rejection mostly. LOL Oh I'm not saying I'm going to stop being positive. It's not in my nature. I'm not even going to complain about the personal attacks or the hate emails.
I've been told I'm preachy, insensitive, a bitch, and accusations have been made as to whether or not I suffer from Fibro at all. I try to deflect these images of me as best I can but the truth is, you can't force people to want to find good in their life when they're determined to feel bad. In fact, when you DO try, and sometimes I admit I try too hard, you become the object of hate and ridicule. Enemy Number One.
Reminding people that there is good out there and they can feel it is an awesome job, but not so awesome when you see the frustration and anger you can bring out in people.
Maybe I'm hated because they really are trying and they can't get to the 98% place yet. They don't believe it's ever coming and for me to continue to say it is possible angers them on the days they're at 2%.
That's how I choose to look at it. Anger and frustration. And boy do I understand that. I wouldn't like me either on those days! It's like the cheerleaders trying to get you interested in a game when you're down 50 pts with two minutes left. Its just not happening.
I get it. But just like the cheerleaders, I'm not going to give up.
I have to be positive because I know good health and good days are possible. I feel confident that in the future we'll only have more understanding and awareness.. and more treatments! I have faith.
I don't want anyone to feel as though their life is over and they can't find anything worth living for. Gods I will argue with anyone, piss off the world if I can just convince one person with Fibro not to give up.
I'm not saying this to martyr myself or to be preachy dammit. It is just how I feel. So many people, my friends...they all are just...teetering, looking for something to make them whole again. And until you hear the cries of many you just can't know the kind of pressure being positive can bring and why I can NEVER waiver on it or let others shut me down.
I will be here. I will be annoyingly positive... and I care deeply about you all.
All my best,
Gin
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