In my last post I mentioned my concern for another day in the afternoon heat. My fear was well-founded. Just before Josh's second All-Star game was done, I started feeling funny. As we were rounding up our belongings, chairs, etc., my legs were shaking, head pounding, nausea, faint and a funny sensation throughout my entire body. As I settled in the truck for the hour ride home, I felt like I would pass out, sweat pouring. I dosed off and on. When arriving at our daughter's home I had a hard time walking. We excused ourselves from dinner and went home. After a brief nap, I could function briefly. Had a very sound sleep at night. I woke up this morning not feeling great, but there was still one game to play. The team did awesome.
I feel my body's reaction was from the lack of rest for several days and the heat. Even though everyone was very attentive to ensure I sat in the shade, I was unable to have periods of time to lay down.
Not feeling well, was again my fault, but didn't want to miss Josh's game. I have trouble balancing my need and my wants. I am so frustrated with being limited. I don't have time for being limited!! I realize God is trying to show me the slower side of life, which I always prayed for, I just didn't want to hurt.
Monday, June 29, 2009
Sunday, June 28, 2009
Heat of the Day
Yesterday we attended our grandson's All-Star baseball game. The game was held at 2 pm. I don't know the temperature, but HOT. We purchased and sat under a canopy, which saved us. As I've said before, my Fibro does not like heat. Today is another game at 2 pm, so pray for my body to have tolerance. I have Vicodin to take as I need it. Today will be one of those days. Only took one yesterday, but I can tell how I feel this morning that I will need to start sooner. Monday's game is at 9 am. Thank God! I would love to hear from others in how they handle the heat. I realize that I would physically feel better if I stayed home in my air conditioned home, but my heart would be broken. Watching my kids and grandkids participate in activities they enjoy is a great joy to me.
Saturday, June 27, 2009
Chronic?
When the doctor told you, "Fibromyalgia is a chronic disease" did it really register?
For me, I understood what chronic meant, but the realization of chronic sunk in later. Probably on a day when depression was trying to knock me down. Then as you are reading everything you can get your hands on, you find articles about how Fibromyalgia has been cured. Your hopes rise. Some roller coaster we are on huh? I had this ride yesterday while at the Chiropractor's office, then again this am when I read a note on Facebook. The Chiropractor has a new program I am going to try. Sorry I can't remember the name of it, (surprised?) but will update you after my appointment on Tuesday. She said she has a cousin with Fibro and she was cured on this program. If you are like me, we are always looking for that cure. The Chiropractor believes Fibro is caused by environment and food we eat. So, we have a different view, but I'm going to try it. If she can make me feel even a small bit better...I will follow her anywhere!
Off to grandson's All-Star game today. They don't play to 2 pm so wish me luck all afternoon in the sun. :>)
For me, I understood what chronic meant, but the realization of chronic sunk in later. Probably on a day when depression was trying to knock me down. Then as you are reading everything you can get your hands on, you find articles about how Fibromyalgia has been cured. Your hopes rise. Some roller coaster we are on huh? I had this ride yesterday while at the Chiropractor's office, then again this am when I read a note on Facebook. The Chiropractor has a new program I am going to try. Sorry I can't remember the name of it, (surprised?) but will update you after my appointment on Tuesday. She said she has a cousin with Fibro and she was cured on this program. If you are like me, we are always looking for that cure. The Chiropractor believes Fibro is caused by environment and food we eat. So, we have a different view, but I'm going to try it. If she can make me feel even a small bit better...I will follow her anywhere!
Off to grandson's All-Star game today. They don't play to 2 pm so wish me luck all afternoon in the sun. :>)
Friday, June 26, 2009
Practice What You Preach
Or...do as I say, not as I do...
I have been dealing with Fibro long enough to know you need to take your medication ON TIME!!! Today I had a Chiropractic appointment at 10:30 am. I also needed to have a fasting blood draw. This did not require an appointment so decided I would have the blood draw just before the Chiropractic appointment as it was a 30 minute drive. I can't take my medication until after I eat and could not eat before the blood draw. I couldn't get into the lab until 10:30. My Chiropractor was nice enough to work me in even though I was late. She is GREAT! If anyone is reading this in Wallowa County, her name is Dr. Billie Suto, DC.
I have found, through experience, I need to take my medication before 9 am. Today it was closer to 11 am. When I am later taking the meds, my whole day is miserable. Tomorrow is another day...
Saturday is my grandson, Josh's first All-Star baseball game. Our daughter purchased us an All-Star shirt with Josh's #12 on the back. It will be a fun day.
So the lesson for the day is take your meds on time each day and you will feel better.
I have been dealing with Fibro long enough to know you need to take your medication ON TIME!!! Today I had a Chiropractic appointment at 10:30 am. I also needed to have a fasting blood draw. This did not require an appointment so decided I would have the blood draw just before the Chiropractic appointment as it was a 30 minute drive. I can't take my medication until after I eat and could not eat before the blood draw. I couldn't get into the lab until 10:30. My Chiropractor was nice enough to work me in even though I was late. She is GREAT! If anyone is reading this in Wallowa County, her name is Dr. Billie Suto, DC.
I have found, through experience, I need to take my medication before 9 am. Today it was closer to 11 am. When I am later taking the meds, my whole day is miserable. Tomorrow is another day...
Saturday is my grandson, Josh's first All-Star baseball game. Our daughter purchased us an All-Star shirt with Josh's #12 on the back. It will be a fun day.
So the lesson for the day is take your meds on time each day and you will feel better.
Tuesday, June 23, 2009
Fibrofog
Another funny word...Fibrofog is difficult to explain. It takes on some characteristics of ADHD, but has many MO's of its own.
Those with Fibro have less serotonin and norepinephrine in our brains. Serotonin controls pain in our central nervous system. Norepinephrine helps us focus and concentrate. Therefore, we have confusion, disorientation, finding the right word and then saying it. We mix up words When I was working for an attorney, I started typing the word could in place of the word court. In a legal document, that's not good! Spell checker does not pick up on the error. We have difficulty concentrating, therefore have trouble understanding what we've just read. I read something at least 3 times and hope I finally have it. When a conversation, especially a group conversation, I must concentrate hard on the moment because my mind starts to wonder. That's where my comment on ADHD comes into my mind, as we are easily distracted. I quite often need my family to explain things to me multiple times. For instance, I may ask how to do something and they respond. I turn around to do the project and my mind is blank. I try to wait a bit, hoping the information will return. Usually I need to ask for the directions again. I am very fortunate in that my family understands, but it makes me feel stupid.
One thing to consider is that our brains are so overwhelmed with pain signals that it is difficult to sort out everything entering our brains. Dr. Pellegrino uses the analogy of "Cable Access vs. Dial-Up." Cable access is soooo slow and dial-up is quick.
There are several ways I cope with fibrofog. I try to keep a regiment on things I do every day. Such as taking my meds. They are placed in my cabinet with the back row being vitamins and the front row prescriptions. I put my medication in a small cup starting left to right on the back row, coming down to the front row then going right to left. Sounds like I have Obsessive Compulsive Disorder (OCD). I don't! If I get distracted while gathering the pills, and sometimes I do, it is easier for me to return to the task and remember where I am. Although sometimes I need to look at the pills already in the cup to figure it out.
If I'm going to town for errands, I map out my route to use the least amount of steps. If I don't do this, I find I get home and didn't complete my tasks.
I make LISTS. Lists are huge for me. I have a list on my kitchen table, the stove hood and on my computer. Each list is used for different things. When I can cross off an item, it makes me feel accomplished. This is a "positive" and it is GREAT to have positives.
My husband is tolerant most of the time. He does get frustrated periodically as it is hard for me to finish a sentence. Sometimes he tries to complete the sentence for me. If he is not getting it completed, anxiety shows up. Anxiety is another one of my friends and another blog topic.
When I am thinking of a word, but it won't come out of my mouth, I can usually see the written word, a picture of what the word is, and I can tell you what letter the word starts with. For example, if I am thinking of a horse. I can see the word written and a picture of the animal. I know it starts with "h" but that little five letter word can't come out verbally. Very frustrating. We are in NE Oregon in the small town of Wallowa. The City of LaGrande is about an hour away. When I talk about "going to LaGrande" I often say "going to Longview. Now, Longview, Washington was a city near where I used to live. I mixed the names of the two cities almost daily.
Fibro is not physically seen unless you know the person and can recognize their body language. Who knew this "stuff" was going on? Certainly only another Fibroite.
Those with Fibro have less serotonin and norepinephrine in our brains. Serotonin controls pain in our central nervous system. Norepinephrine helps us focus and concentrate. Therefore, we have confusion, disorientation, finding the right word and then saying it. We mix up words When I was working for an attorney, I started typing the word could in place of the word court. In a legal document, that's not good! Spell checker does not pick up on the error. We have difficulty concentrating, therefore have trouble understanding what we've just read. I read something at least 3 times and hope I finally have it. When a conversation, especially a group conversation, I must concentrate hard on the moment because my mind starts to wonder. That's where my comment on ADHD comes into my mind, as we are easily distracted. I quite often need my family to explain things to me multiple times. For instance, I may ask how to do something and they respond. I turn around to do the project and my mind is blank. I try to wait a bit, hoping the information will return. Usually I need to ask for the directions again. I am very fortunate in that my family understands, but it makes me feel stupid.
One thing to consider is that our brains are so overwhelmed with pain signals that it is difficult to sort out everything entering our brains. Dr. Pellegrino uses the analogy of "Cable Access vs. Dial-Up." Cable access is soooo slow and dial-up is quick.
There are several ways I cope with fibrofog. I try to keep a regiment on things I do every day. Such as taking my meds. They are placed in my cabinet with the back row being vitamins and the front row prescriptions. I put my medication in a small cup starting left to right on the back row, coming down to the front row then going right to left. Sounds like I have Obsessive Compulsive Disorder (OCD). I don't! If I get distracted while gathering the pills, and sometimes I do, it is easier for me to return to the task and remember where I am. Although sometimes I need to look at the pills already in the cup to figure it out.
If I'm going to town for errands, I map out my route to use the least amount of steps. If I don't do this, I find I get home and didn't complete my tasks.
I make LISTS. Lists are huge for me. I have a list on my kitchen table, the stove hood and on my computer. Each list is used for different things. When I can cross off an item, it makes me feel accomplished. This is a "positive" and it is GREAT to have positives.
My husband is tolerant most of the time. He does get frustrated periodically as it is hard for me to finish a sentence. Sometimes he tries to complete the sentence for me. If he is not getting it completed, anxiety shows up. Anxiety is another one of my friends and another blog topic.
When I am thinking of a word, but it won't come out of my mouth, I can usually see the written word, a picture of what the word is, and I can tell you what letter the word starts with. For example, if I am thinking of a horse. I can see the word written and a picture of the animal. I know it starts with "h" but that little five letter word can't come out verbally. Very frustrating. We are in NE Oregon in the small town of Wallowa. The City of LaGrande is about an hour away. When I talk about "going to LaGrande" I often say "going to Longview. Now, Longview, Washington was a city near where I used to live. I mixed the names of the two cities almost daily.
Fibro is not physically seen unless you know the person and can recognize their body language. Who knew this "stuff" was going on? Certainly only another Fibroite.
Sunday, June 21, 2009
Ropey Muscles
One day while putting lotion on after a shower, I noticed something felt different. I couldn't identify it. I was over 50 years old and never notice this before. By this age, you know how your body feels. Not to long after a friend with fibro sent me an email complaining of the same thing. You start thinking it's a new epidemic! To my "Fibro Bible" I go. Sure enough there is a section on "Ropey Muscles." In part, Dr. Pellegrino describes the fibromyalgia muscle like this. "Normal muscle has a texture of firm gelatin. Imagine that you take this firm gelatin and put in some grapes and strands of carrots and a couple chunks of pineapple, and when you palpate the gelatin fruit salad, you can imagine the lumpy, bumpy consistency (grapes and chunks) and ropey consistency (carrot strands). This is what fibromyalgia muscles feel like." You can see why I enjoy his writing style. :>)
My body shows me new "feels" every day. Some come and go, some stay forever. Gotta roll with the punches or you will go nuts (my opinion). When in doubt about what to do...REST!
My body shows me new "feels" every day. Some come and go, some stay forever. Gotta roll with the punches or you will go nuts (my opinion). When in doubt about what to do...REST!
Saturday, June 20, 2009
Source of Information
I have enjoyed reading the online source of http://about.com/. There are many topics to choose from. Once you click on a topic, you will receive a one page email once a week on that topic. They have one entitled Fibromyalgia and Chronic Fatigue Syndrome. It is written by Adrienne Dellwo. Check it out!
Friday, June 19, 2009
Menopause Symptoms
Well, my monthly cycle is 2 months late. I'm thrilled that I may not have to deal with this in the near future. However, it's messing with my Fibromyalgia and that's NOT ok. I am hurting more in the last month than I've hurt for a number of years. Dr. said she can put me on hormone replacement therapy (HRT) or I can try herbal therapy. HRT can cause a slight risk to breast cancer. I'm going to try herbal therapy first. I don't know which one, but will seek the advice of the health community.
I have also experienced tremors of my hands and head. Not sure their source, but Dr. wanted to know if the tremors started prior or after I start on Neurotin. I am to try to notice a pattern as to when the tremors happen, when I'm tired, stressed? When I do have my cycle, do the tremors stop?
All so confusing. Are my "issues" related to Fibromyalgia or Menopause?
I have also experienced tremors of my hands and head. Not sure their source, but Dr. wanted to know if the tremors started prior or after I start on Neurotin. I am to try to notice a pattern as to when the tremors happen, when I'm tired, stressed? When I do have my cycle, do the tremors stop?
All so confusing. Are my "issues" related to Fibromyalgia or Menopause?
Thursday, June 18, 2009
Fibronomics
Fibronomics? I learned this term by reading Mark J. Pellegrino, M. D.'s book. "Fibronomics is defined as the art of properly manipulating our fibromyalgia bodies in the environment to enable completion of an activity with minimal pain. Fibronomics can be applied to everything we do in life, no matter how simple it is. There are four easy rules of fibronomics, and once these are learned and applied, our bodies will automatically follow them."
Four Rules to Fibronomics:
1. Arms stay at home: The favorite position for our arms is at our side with our elbows touching on our sides...
2. Unload the back: Avoid bending forward at the waist; maintain a natural arched curvature; put your feet on a foot rest; lie on your side with a pillow between your knees; avoid picking up heavy objects, bend your knees and lift with your legs; wear sensible shoes, no heels.
3. Support always welcome: Use support items like pillows or footstools. Whatever works for you.
4. Be naturally shifty: Move or shift your muscles regularly.
Today has been a day of trying to remember my fibronomics. When I am able to accomplish multiple tasks in one day, I find that I push my body too far. When my body is DONE, I forget the basic rules that help to keep my Fibromyalgia in control.
Four Rules to Fibronomics:
1. Arms stay at home: The favorite position for our arms is at our side with our elbows touching on our sides...
2. Unload the back: Avoid bending forward at the waist; maintain a natural arched curvature; put your feet on a foot rest; lie on your side with a pillow between your knees; avoid picking up heavy objects, bend your knees and lift with your legs; wear sensible shoes, no heels.
3. Support always welcome: Use support items like pillows or footstools. Whatever works for you.
4. Be naturally shifty: Move or shift your muscles regularly.
Today has been a day of trying to remember my fibronomics. When I am able to accomplish multiple tasks in one day, I find that I push my body too far. When my body is DONE, I forget the basic rules that help to keep my Fibromyalgia in control.
Wednesday, June 17, 2009
We took a Costco run today. The closest to us is 2 hours drive time. We bought groceries then ran a few more errands. We took a detour on the return trip. It was a beautiful drive. Stopped several times and took photos. Have photos of elk, deer, mares and colts, ducks and flowers. We have a website of our photos at dwainspix.com. Take a look if you have time.
At dwainspix.com you will also find a listing for several blogs. I will list them here also.
dwainspix.blogspot.com is a photography blog
danddrv.blogspot.com is a blog on RV tips as well as full-timing information
Altho it was a beautiful drive, the road was rough. When riding in a truck on a bumpy road, the Fibro reminds you of it's presence. So I'm off to bed!
At dwainspix.com you will also find a listing for several blogs. I will list them here also.
dwainspix.blogspot.com is a photography blog
danddrv.blogspot.com is a blog on RV tips as well as full-timing information
Altho it was a beautiful drive, the road was rough. When riding in a truck on a bumpy road, the Fibro reminds you of it's presence. So I'm off to bed!
Tuesday, June 16, 2009
A Warm Day
Most folks with Fibromyalgia have reactions to cold weather. I have more of a reaction to hot /warm weather. Unfortunately warm weather is anything over 65 degrees. My muscles hurt more and they cramp often. I drink alot of water, so it is not dehydration. I also have more of a headache.
Fibromyalgia Up Close and Personal
I want to recommend a GREAT book on Fibromyalgia. The title is Fibromyalgia Up Close and Personal. The author is Mark J. Pellegrino, MD. He has a writing style that will make you smile while reading and he writes in common language, not with big medical words. Dr. Pellegrino has Fibromyalgia himself. You feel he understands every symptom and he does. He practices medicine in Ohio. I have read this book several times. I often refer to the book when I have a new symptom to see if Dr. Pellegrino has written about the symptom. This book has given me a resource for reassurance.
Monday, June 15, 2009
Nothing Accomplished...
Nothing accomplished today except taking a bag of clothes to the thrift shop.
Good Morning
Had a great sleep last night. It ended by my husband turning on the television at 6 am...not sure if having a television in the bedroom is a good idea. It does come in handy when we want to watch different programs. But believe me, when I'm trying to sleep is NOT when I want it on. Expressing my opinion has not always registered with him and we've been married almost 37 years. I did have 8 hours of sleep so....oh well. Sometimes you need to pick your battles.
My feet feel hot this morning. When touched they don't feel hot. I'm sure my nervous system is just out of whack. Imagine my nervous system being whacked! :>0
My feet feel hot this morning. When touched they don't feel hot. I'm sure my nervous system is just out of whack. Imagine my nervous system being whacked! :>0
Sunday, June 14, 2009
A Nice Day
Spent the morning at my grandson, Josh's horse clinic. The judge was great! Josh did well. It was a 3 hour class so sitting on wooden bleachers was a challenge. I've learned to bring to bring along a soft blanket to sit on. I was able to stretch my legs a few times.
I fixed lunch after arriving home then took a long nap. Everything I'm able to read about Fibromyalgia says not to sleep in the afternoon so you will sleep better at night. Taking a nap has never stopped me from sleeping at night. Then again, I take 25 mg of Trazodone before bedtime so I CAN sleep. Dr. said that no one can take 25 mg and sleep. You need at least 50 mg and most people need alot more. Guess I'm a lucky dog not to need as much. Am I being thankful again? Why yes I am!!
We watched the last installment of Lonesome Dove this evening. Been nice to stretch out in my chair. It is 10 pm and I've got to get to bed. I usually don't stay up this late.
I fixed lunch after arriving home then took a long nap. Everything I'm able to read about Fibromyalgia says not to sleep in the afternoon so you will sleep better at night. Taking a nap has never stopped me from sleeping at night. Then again, I take 25 mg of Trazodone before bedtime so I CAN sleep. Dr. said that no one can take 25 mg and sleep. You need at least 50 mg and most people need alot more. Guess I'm a lucky dog not to need as much. Am I being thankful again? Why yes I am!!
We watched the last installment of Lonesome Dove this evening. Been nice to stretch out in my chair. It is 10 pm and I've got to get to bed. I usually don't stay up this late.
Saturday, June 13, 2009
My Fibromyalgia Symptoms
To follow is a list of my Fibromyalgia symptoms:
Pain - medication has helped but does not go completely away
Fatigue - must monitor my activity. Fatigue is constant, worsening with movement and later in the day
IBS - the more I am on my feet, the worse this becomes
Balance - constant problem, worse as fatigue increases
Eyes - some days I have blurry vision or dark spots appear, burn, dry
Hearing - don't hear as well. May not be Fibromyalgia but noticed a difference when other symptons appeared. Hearing and balance tested.
Cognitive - replace words verbally and written with inappropriate words. Loose train of thought often
Swallowing - at times my throat feels restricted. Must drink water to swallow food, increases with fatigue
Sunlight and Noise - more intense than prior to Fibromyalgia, increases with fatigue
Depression - intense at times
Anxiety - This rears its head when plans change abruptly or I need to make a quick decision
Restless Leg - jerking. Creepy crawlies on legs and arms
Memory - Recall is difficult. Can see the words in my brain, but can't verbalize, worse as fatigue increases
Concentration - difficult
Sleep - averaging 1.5 hours without medication. With medication I get good sleep
Nausea - comes with fatigue
Itchy Spots - near underarm and knees - comes and goes
Headache - always there but with increased fatigue worsens. Migraines occasionally
Sweating - increased activity and fatigue. I have done this all my life when my body is taxed
Cold sensation and goose bumps on arms and thighs with increased activity. My husband calls is a "cold snap" as opposed to a hot flash
Tingling/numbness in limbs - comes and goes with increased fatigue
Loss of hair - lost a lot of hair during first year. My hair is now thinner
Blood Pressure - BP is high on medication. Dr. believes due to medication for Fibromyalgia..Effexor XR
Stiffness - Worse in am. When I rise from a sitting position, takes several steps to straighten
Cold sores - periodically, Lysine has helped
I am thankful not to have additional symptoms. Sometimes I need to remind myself to be thankful. When you hurt, physically weak from fatigue, sweating like a horse and your IBS kicks in, it's difficult to remember that you only have chronic illness.
I spent the day at the fair grounds watching my grandson, Josh, 10, participate in a horse show. He did well. My Fibro stayed in check. What do you know...a thankful moment!
Pain - medication has helped but does not go completely away
Fatigue - must monitor my activity. Fatigue is constant, worsening with movement and later in the day
IBS - the more I am on my feet, the worse this becomes
Balance - constant problem, worse as fatigue increases
Eyes - some days I have blurry vision or dark spots appear, burn, dry
Hearing - don't hear as well. May not be Fibromyalgia but noticed a difference when other symptons appeared. Hearing and balance tested.
Cognitive - replace words verbally and written with inappropriate words. Loose train of thought often
Swallowing - at times my throat feels restricted. Must drink water to swallow food, increases with fatigue
Sunlight and Noise - more intense than prior to Fibromyalgia, increases with fatigue
Depression - intense at times
Anxiety - This rears its head when plans change abruptly or I need to make a quick decision
Restless Leg - jerking. Creepy crawlies on legs and arms
Memory - Recall is difficult. Can see the words in my brain, but can't verbalize, worse as fatigue increases
Concentration - difficult
Sleep - averaging 1.5 hours without medication. With medication I get good sleep
Nausea - comes with fatigue
Itchy Spots - near underarm and knees - comes and goes
Headache - always there but with increased fatigue worsens. Migraines occasionally
Sweating - increased activity and fatigue. I have done this all my life when my body is taxed
Cold sensation and goose bumps on arms and thighs with increased activity. My husband calls is a "cold snap" as opposed to a hot flash
Tingling/numbness in limbs - comes and goes with increased fatigue
Loss of hair - lost a lot of hair during first year. My hair is now thinner
Blood Pressure - BP is high on medication. Dr. believes due to medication for Fibromyalgia..Effexor XR
Stiffness - Worse in am. When I rise from a sitting position, takes several steps to straighten
Cold sores - periodically, Lysine has helped
I am thankful not to have additional symptoms. Sometimes I need to remind myself to be thankful. When you hurt, physically weak from fatigue, sweating like a horse and your IBS kicks in, it's difficult to remember that you only have chronic illness.
I spent the day at the fair grounds watching my grandson, Josh, 10, participate in a horse show. He did well. My Fibro stayed in check. What do you know...a thankful moment!
Friday, June 12, 2009
Welcome!
I invite you to join me on this blog. Together we can share our experiences with Fibromyalgia and related medical issues.
I was diagnosed with Fibromyalgia in February, 2003. I was on a leave of absence from my job as a legal secretary, unable to work due to fatigue and Fibromyalgia pain. My husband, Dwain and I made the decision to retire in the spring. We put our home for sale and decided to live in our 37'
Fifth Wheel full-time. Full-timing has been good for my Fibro. I have a smaller home to clean. The people we meet during our travels are happy, fun folks. I enjoy looking out my window in the morning to see what my new yard looks like with no worry about needing to mow or water the yard.
I have been experiencing a flare. I know the best medicine is rest, rest and more rest. Unfortunately like many Fibroites, I tend to push myself....sound familiar? I hate to miss fun experiences, because I have a chronic illness. Therefore, I pay the consequences. I try to balance fun with rest. It's about learning YOU and how YOU react to your daily activities, whether it be fun activities or housework.
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