So, yeah. I'm getting pretty tired of not sleeping (lol no pun intended). I get to increase my amitryptyline tonight so maybe, hopefully, PLEASE, it will do the trick. Mark's having a hard time sympathizing with me on the exhaustion. He goes to sleep and sleeps like a rock until morning. I'm very aware that he does, because I'm AWAKE to see it! I unfortunately, have the pleasure of falling asleep after 3 hrs or so after he does, then waking up every 2 hrs all night long, in addition to sleeping really really lightly and waking up to the slightest sound. I've had all kinds of suggestions on "how to sleep better", ranging from getting a new mattress, to melatonin, to various different medications that have "worked for them". My mattress is great, I love my fulffy soft cozy mattress, it's not the problem. Melatonin, valerian root, L-tryptophan, each alone, and combined, and double dosed did nothing. It's a sleep disorder, and it's common with Fibromyalgia. Eventually we (meaning the doctor and I) will find the appropriate treatment for this problem.
On a good note, I have not had one single migraine since the doctor put me on these medications. It doesn't sound like much, but it's been a week and a half (well, a little over that) and no migraines. For me however, that is a vast improvement from the 2 or more migraines that I was having each week. I am very very thankful for that.
So, in conclusion, I'm learning to live and manage my symptoms and adjust my life and medications accordingly. I'm still in pain, and I'm still exhausted, but at least I'm learning. And I've been doing as much research on Fibromyalgia as I possibly can. Knowledge is everything....
Saturday, February 21, 2009
Friday, February 20, 2009
A letter to the healthy world
This is my life, please read:
If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.
4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.
6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.
10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.
11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies.
If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.
4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.
6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.
10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.
11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies.
My name is Fibromyalgia
I just found this online, and I had to share it. It's so true.
MY NAME IS FIBROMYALGIA
by Terri Been
Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. Iam now velcroed to you for life. Others around you can't see me or hear me,but YOUR body feels me. I can attack you anywhere and anyhow I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you toache all over.
Remember when you and Energy ran around together and had fun?
I took Energy from you, and gave you Exhaustion. Try to have fun now! Ialso took Good Sleep from you and, in its place, gave you Brain Fog. I canmake you tremble internally or make you feel cold or hot when everyone elsefeels normal. Oh, yeah, I can make you feel anxious or depressed, too. If youhave something planned, or are looking forward to a great day, I can takethat away, too. You didn't ask for me. I chose you for various reasons:
That virus you had that you never recovered from, or that car accident,
or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!I hear you're going to see a doctor who can get rid of me. I'm rollingon the floor, laughing. Just try. You will have to go to many, many doctorsuntil you find one who can help you effectively. You will be put on pain pills,sleeping pills, energy pills, told you are suffering from anxiety or depression,given a TENs unit, get massaged, told if you just sleep and exercise properly Iwill go away, told to think positively, poked, prodded, and MOST OF ALL, nottaken as seriously as you feel when you cry to the doctor how debilitating lifeis every day.
Your family, friends and coworkers will all listen to you until theyjust get tired of hearing about how I make you feel, and that I'm a debilitatingdisease. Some of they will say things like "Oh, you are just having a bad day" or"Well, remember, you can't do the things you use to do 20 YEARS ago", nothearing that you said 20 DAYS ago. Some will just start talking behind yourback, while you slowly feel that you are losing your dignity trying to make themunderstand, especially when you are in the middle of a conversation with a
"Normal" person, and can't remember what you were going to say next!In closing, (I was hoping that I kept this part a secret), but I guess you already
found out...the ONLY place you will get any support and understanding in dealing
with me is with Other People With Fibromyalgia.
MY NAME IS FIBROMYALGIA
by Terri Been
Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. Iam now velcroed to you for life. Others around you can't see me or hear me,but YOUR body feels me. I can attack you anywhere and anyhow I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you toache all over.
Remember when you and Energy ran around together and had fun?
I took Energy from you, and gave you Exhaustion. Try to have fun now! Ialso took Good Sleep from you and, in its place, gave you Brain Fog. I canmake you tremble internally or make you feel cold or hot when everyone elsefeels normal. Oh, yeah, I can make you feel anxious or depressed, too. If youhave something planned, or are looking forward to a great day, I can takethat away, too. You didn't ask for me. I chose you for various reasons:
That virus you had that you never recovered from, or that car accident,
or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!I hear you're going to see a doctor who can get rid of me. I'm rollingon the floor, laughing. Just try. You will have to go to many, many doctorsuntil you find one who can help you effectively. You will be put on pain pills,sleeping pills, energy pills, told you are suffering from anxiety or depression,given a TENs unit, get massaged, told if you just sleep and exercise properly Iwill go away, told to think positively, poked, prodded, and MOST OF ALL, nottaken as seriously as you feel when you cry to the doctor how debilitating lifeis every day.
Your family, friends and coworkers will all listen to you until theyjust get tired of hearing about how I make you feel, and that I'm a debilitatingdisease. Some of they will say things like "Oh, you are just having a bad day" or"Well, remember, you can't do the things you use to do 20 YEARS ago", nothearing that you said 20 DAYS ago. Some will just start talking behind yourback, while you slowly feel that you are losing your dignity trying to make themunderstand, especially when you are in the middle of a conversation with a
"Normal" person, and can't remember what you were going to say next!In closing, (I was hoping that I kept this part a secret), but I guess you already
found out...the ONLY place you will get any support and understanding in dealing
with me is with Other People With Fibromyalgia.
Thursday, February 19, 2009
And the journey continues......
So I'm finally starting to come to terms with having fibromyalgia. It sucks, but I'm not going to let it run or ruin my life. I've got a wonderful husband that is so very supportive of me, and I'm so grateful to God for putting him in my life. While he can't "understand" what I'm going through, he tries his best and is always there for me to lean on and I can't even begin to tell him how grateful I am to have him.
I went to the doctor today, and he changed my meds. Well, he didn't "change" them, he upped the dosages on them. So now I have to take even more, but hey, it's OK. If it helps, it's a good thing. While I don't like watching the clock and taking pills all day, it is making a difference, and that is definitely a good thing. He's a very understanding doctor too, which I can really appreciate as you can imagine. He actually listens to me, which I haven't had from a doctor in a long time, and I am so grateful that God keeps providing for me.
I'm learning a lot about Fibromyalgia. It's a very interesting condition, and very multifaceted, so I am learning that more and more of the problems that I've been suffering with since I was a child are probably due to having this condition. It's kind of a crummy problem to have, but I'm grateful that it's not life threatening. It is something that in time, I can learn to manage, if I'm dilligent and patient and I listen to my body. That is key, listening to my body. It tells me things all the time, and I need to learn to hear what it is saying.
I'm going to attempt to quit smoking soon. I'm a bit fearful about quitting. I've tried so many times and failed, that it's hard to believe that I can now. It's been a crutch and a friend for so long that my life is going to seem different without that smelly nasty cigarette. I'm reading a book right now called "Quitting the Easy Way", and I'm about half way through. It's been very informative and is giving me hope. I am going to do it. I can and I will!
I got a coupon in the mail today that I am really excited about. My doctor suggested getting massages for muscle pain and tension, but I was like "oh yeah, I can afford that". But this coupon just happened to show up in my mailbox today. It's for a 90 minute, yes I said 90 minute, massage for $57. That is a heck of a deal and I'm going to do it! I already asked Mark if it was ok with him and he said yes, so YAY! Now..... to find a babysitter LOL. I'm sure I'll figure something out, but I'm sure as heck NOT going to take even one singe child with me to it LOL. I'm going ALONE! :) Anyway..... that's what's going on the Green household at the moment. Hope everyone is happy and healthy!
I went to the doctor today, and he changed my meds. Well, he didn't "change" them, he upped the dosages on them. So now I have to take even more, but hey, it's OK. If it helps, it's a good thing. While I don't like watching the clock and taking pills all day, it is making a difference, and that is definitely a good thing. He's a very understanding doctor too, which I can really appreciate as you can imagine. He actually listens to me, which I haven't had from a doctor in a long time, and I am so grateful that God keeps providing for me.
I'm learning a lot about Fibromyalgia. It's a very interesting condition, and very multifaceted, so I am learning that more and more of the problems that I've been suffering with since I was a child are probably due to having this condition. It's kind of a crummy problem to have, but I'm grateful that it's not life threatening. It is something that in time, I can learn to manage, if I'm dilligent and patient and I listen to my body. That is key, listening to my body. It tells me things all the time, and I need to learn to hear what it is saying.
I'm going to attempt to quit smoking soon. I'm a bit fearful about quitting. I've tried so many times and failed, that it's hard to believe that I can now. It's been a crutch and a friend for so long that my life is going to seem different without that smelly nasty cigarette. I'm reading a book right now called "Quitting the Easy Way", and I'm about half way through. It's been very informative and is giving me hope. I am going to do it. I can and I will!
I got a coupon in the mail today that I am really excited about. My doctor suggested getting massages for muscle pain and tension, but I was like "oh yeah, I can afford that". But this coupon just happened to show up in my mailbox today. It's for a 90 minute, yes I said 90 minute, massage for $57. That is a heck of a deal and I'm going to do it! I already asked Mark if it was ok with him and he said yes, so YAY! Now..... to find a babysitter LOL. I'm sure I'll figure something out, but I'm sure as heck NOT going to take even one singe child with me to it LOL. I'm going ALONE! :) Anyway..... that's what's going on the Green household at the moment. Hope everyone is happy and healthy!
Wednesday, February 18, 2009
Suffering from exhaustion anyone? LOL
So it's been a rough week. The day before I got diagnosed with fibromyalgia my daughter Cheyanne threw up in the morning, not a terribly unusual instance, she hadn't had breakfast yet and decided to tank up on milk. That is something that is strictly forbidden with my children, because if they drink ANYTHING before they eat, they often throw up. Ok, well, better safe than sorry right? So I kept her home from school. As the day went on, everything was just fine, no more barfing, playing normally, watching cartoons, coloring, you know, the usual. The next morning, as I was getting everyone ready for school and to go to my doctor's office, my son Adrian throws up. Ugh, right before my doctor's appointment. Ok, well, sick people go to the doctor, so I guess he'll just have to go too. I need to see the doctor, it's really important, so I take a chance. Everything is fine in the doctor's office, I talk to him for a long time, get diagnosed with fibromyalgia, and we're ready to go home. As we're leaving, my daughter Sadie starts burping. Her burps have the tell-tale odor of illness. I don't know how best to describe it, but burnt eggs? I don't know, whenever my kids have the flu, including myself, there is this awful burp taste and/or smell that gives it away. Oh joy! The flu! I run to the store to pick up my prescriptions get some gatorade and crackers and such in anitcipation of the next few coming days. We go home, the ones that have NOT thrown up get lunch, and the sickies get some crackers and water. About an hour or so after lunch Sadie get's sick. Thankfully she had a bowl :) smart mama I am.... LOL. So now she's sick. I go through the day cleaning up messes, disinfecting, doing laundry, changing sheets. If you've got kids, you know the drill. Everything's moving along, but I'm tired. Fibromyalgia will do that to you, I'm just plain exhasted by bedtime, and all I want to do is just go to sleep. I can't sleep though of course, also compliments of fibromylagia. So I take a pill to help me sleep and of course, IT DOESN'T WORK! Of course right? About 30 minutes or so after I lay down to go to sleep, my little one, Ana wakes up and barfs all over her bed. I have to bathe her, change her sheets, spray and wipe down her mattress, get her settled with a bowl, and hope she gets some sleep. So I'm trying to sleep, getting up every 30 min to an hr to aid a hurling child, giving mid-night baths, doing laundry all night long. I think I ended up with about an hour of actual sleep. So the next day I'm wiped out. Well, all but one child is done, and feeling a bit better. YAY, except for Adrian. He's got what's called Cyclic Vomiting. If he throws up for any reason, it can end him up in the hospital. I keep Phenergran suppositories on hand always for this poor kid, because even something as simple as motion sicknes can throw him into a cycle of vomiting that can last for weeks if untreated. Well, he starts doing better, and by the following day (Thursday) everyone back in school and doing fine. YAY again! So Valentines day comes and goes uneventfully, and everything's good. We have a delicious home cooked steak dinner with the kids and a wonderfully relaxing quiet evening. Yay again right? WRONG! I wake up the next morning (Sunday) at 3 am and now I'm sick! I can't keep anything down let alone my fibro meds. So now, not only am I sick to my stomach, sleeping all day, but now I've got all of the fibro pains back and it feels worse than it did before I got the meds! I was pretty sure I'd never been so miserable in my life as Sunday Feb. 15 2009. Everyone is well now, thank God, and my meds are back on schedule, and I'm feeling much much better. I'm still exhausted, but I've got an appointment again on Thursday with my doctor, and my meds will be adjusted. Hopefully I'll get a medication for sleep that will actually work for me, along with a muscle relaxer that will actually work also, and I'll start getting some sleep. Anyway, It's a rough road learning to deal with the trials and tribulations of maintaining a normal life and learning to deal with Fibromyalgia.
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