It's been a while since I have written in this blog. So much has gone on and happened, and I'm exhausted just thinking about all I need to update on. So, I'm just going to touch base on some of the most important things right now.
Dan and I have broken up, as in for good. It happened in October. It completely broke my heart, and I didn't think I was going to survive and make it. I really didn't. He is now back in Massachusetts, and I am still here in the apartment. I miss him, but I miss him more as a friend then anything else.
I am seeing someone else now. His name is Randy, and he has been wonderful to me so far. He truly cares and he does so much for me. I worry that all of my problems will eventually wear on him, as that always seems to happen, but I'm trying not to think that way. I really love him, he's so wonderful.
My body is in horrid shape. Due to transportation and money issues, I have not been able to get to any of my appointments. It sucks because I had finally gotten a good medical support team down here, and was getting what my body needed. So I'm not doing so well physically now, but hopefully we'll figure something out soon. I know Randy is trying to help me figure it out as well.
That's just a quick note to get you all caught up. I will try to do better with this blog again, but please bear with me.
Hope everyone is doing well!
Showing posts with label FMS. Show all posts
Showing posts with label FMS. Show all posts
Tuesday, February 28, 2012
Tuesday, August 30, 2011
Blog Award Recieved!
As some of you may have noticed, there is now another image on the side of my blog. It is for being number 35 in their list of "100 Best Sites for Fibromyalgia and Chronic Fatigue Information." This was given to me by a company called VitaSciences. While although it appears they are trying to sell a product, it is also very wonderful that they took the time to make this list to help us find information.
It seems as though this list was compiled back in May in honor of Fibromyalgia Awareness Week. (I always thought it was just a day, but what do I know?) However, I did not get an email about this until just a few days ago.
Here is an excerpt from the page: "In honor of Fibromyalgia Awareness Week, we’ve scoured the web and compiled a list of 100 great websites for people who suffer from Chronic Fatigue Syndrome (CFS), Fibromyalgia and other chronic pain disorders. Below is a conglomeration of personal blogs, government sites, forums and medical pages- some are funny and insightful, some provide lots of great tips on coping with the pain in your life, and some are inspirational…all are gems that we know you will appreciate."
Lastly, here is where you will find the complete list: 100 Best Sites for Fibromyalgia and Chronic Fatigue Information
It seems as though this list was compiled back in May in honor of Fibromyalgia Awareness Week. (I always thought it was just a day, but what do I know?) However, I did not get an email about this until just a few days ago.
Here is an excerpt from the page: "In honor of Fibromyalgia Awareness Week, we’ve scoured the web and compiled a list of 100 great websites for people who suffer from Chronic Fatigue Syndrome (CFS), Fibromyalgia and other chronic pain disorders. Below is a conglomeration of personal blogs, government sites, forums and medical pages- some are funny and insightful, some provide lots of great tips on coping with the pain in your life, and some are inspirational…all are gems that we know you will appreciate."
Lastly, here is where you will find the complete list: 100 Best Sites for Fibromyalgia and Chronic Fatigue Information
Wednesday, July 20, 2011
ER Trip and Another Worry
So last night, after dinner, I had trouble breathing. It felt like my throat was swollen. I kept feeling like I had to swallow, and if I didn't, I felt like I was suffocating. But when I did swallow, it was nearly impossible to gain my breath back. After awhile, I was pretty much hyperventilating. So off to the ER we had to go. We get there and tell them what is going on. The ER was a madhouse and so I still had to wait for ages. I was getting dizzy and lightheaded. Eventually, (and seriously I had to wait longer then I should of when I couldn't freakin' breathe!) they got me back and into a bed. The visit was horrible and they were slower then ever before. But to make a long story short, there was some inflammation in my throat but nothing overly major. They gave me two days worth of Prednisone in order to bring the swelling down. They also gave me a nebulizer treatment which helped my breathing. Lastly, they gave me an albuterol inhaler to go home with, in case something like that happened again. (Of course, it took about 45 minutes to get the albuterol from their pharmacy.)
It feels better today. Swallowing is still a tiny but difficult, but much better then last night, and I can breathe normal again, which is obviously a good sign. Here's the funny thing though. I feel so much better in general. (With the exception of not much sleep last night, which they told me might happen due to the medicine in the nebulizer and the prednisone.) But I feel less pain, more energy, I feel less heat sensitive, etc. This actually scares me. The only connection I see is the prednisone, and that worries me that maybe I have something autoimmune. But then again, it's probably too soon to tell and it could just be a coincidence. Who knows.
On the good news side, I am seeing a new PNP on Monday, who is going to help me find a new PCP. Although I do still feel guilty about doing it, it's what I need to do for myself. It has just gotten to the point where I don't see any other options.
Well, that's it for now.
Hope everyone is having a spoonful day :)
It feels better today. Swallowing is still a tiny but difficult, but much better then last night, and I can breathe normal again, which is obviously a good sign. Here's the funny thing though. I feel so much better in general. (With the exception of not much sleep last night, which they told me might happen due to the medicine in the nebulizer and the prednisone.) But I feel less pain, more energy, I feel less heat sensitive, etc. This actually scares me. The only connection I see is the prednisone, and that worries me that maybe I have something autoimmune. But then again, it's probably too soon to tell and it could just be a coincidence. Who knows.
On the good news side, I am seeing a new PNP on Monday, who is going to help me find a new PCP. Although I do still feel guilty about doing it, it's what I need to do for myself. It has just gotten to the point where I don't see any other options.
Well, that's it for now.
Hope everyone is having a spoonful day :)
Friday, May 13, 2011
Fibromyalgia Awareness Day 2011
(This was supposed to be posted yesterday, but due to blogger's issues, it couldn't be.)
Here it is again, May 12th. Fibromyalgia Awareness Day. Awareness is SO important because so many people don't know what these illnesses are, or have misconceptions about them. They are NOT psychological, though that is the common belief. Personally, I sometimes wish they were psychological, because then maybe I could just take a pill and see a psychiatrist and be cured. But no, it really isn't that easy. Another reason awareness is so important is because maybe it will help inspire people to do more research, and hopefully even find an effective treatment or cure. Awareness is also important because we have an "invisible illness" and people cannot tell we are sick just by looking at us, which often tends to make people believe that it is not real. Many doctors still don't believe it is real either, because there is no simple test to confirm Fibromyalgia, it is a diagnosis of elimination.
So, what did I do this year? Well, I did a couple of things. First of all, I wore my Fibromyalgia T-Shirt that I had gotten free from Vistaprint. I also participated in a balloon release. I only got three balloons, as I couldn't afford many, and also didn't want to do more harm to the environment. I wrote on them. They all said, on one side, "Fibromyalgia Awareness Day, May 12, 2011" and then each had their own writings on them. One was for Felicia Fibro because she wasn't able to do it herself, and her's said: "Hope is my future." I also had one that said "Hope for a cure" and the other one said "I long to be free again" which is a quote from a fantastic song written for awareness. Dan and I took them to the park and set them free. We clipped the strings from them, because I had read that those are the worst part for the environment. It was hard to take pictures of them as they flew away, but we did our best. Other then this adventure, I mostly posted lots of things on facebook and twitter.
Fibromyalgia is truly a debilitating disease. I am currently unable to find a job that my body can handle, and even though I now go to school online, that can be hard as well. The main parts of it are chronic fatigue and chronic pain, but honestly, that is just the beginning. Another big problem I have with it is the fibro fog. Someone can tell me something and I might forget it as soon as 5 minutes later, or sometimes something simple will really confuse me. It is very frustrating. I am only 22 years old and often feel as if I am at least 80. Fibromyalgia has taken many parts of my life away, and I can truly say that my life is not the same as it used to be.
Here is a link that might help you understand some symptoms: http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms
Do you still have more questions? Ask me, I'm always here and willing to answer.
Also, if you or a loved one suffers from Fibro, what did YOU do for awareness today?
Last, but by no means least, I wanted to share a video I made for Fibromyalgia & CFS/ME Awareness. It looks better on youtube though, so here is the link: Fibromyalgia & CFS/ME Awareness Video.
Here it is again, May 12th. Fibromyalgia Awareness Day. Awareness is SO important because so many people don't know what these illnesses are, or have misconceptions about them. They are NOT psychological, though that is the common belief. Personally, I sometimes wish they were psychological, because then maybe I could just take a pill and see a psychiatrist and be cured. But no, it really isn't that easy. Another reason awareness is so important is because maybe it will help inspire people to do more research, and hopefully even find an effective treatment or cure. Awareness is also important because we have an "invisible illness" and people cannot tell we are sick just by looking at us, which often tends to make people believe that it is not real. Many doctors still don't believe it is real either, because there is no simple test to confirm Fibromyalgia, it is a diagnosis of elimination.
So, what did I do this year? Well, I did a couple of things. First of all, I wore my Fibromyalgia T-Shirt that I had gotten free from Vistaprint. I also participated in a balloon release. I only got three balloons, as I couldn't afford many, and also didn't want to do more harm to the environment. I wrote on them. They all said, on one side, "Fibromyalgia Awareness Day, May 12, 2011" and then each had their own writings on them. One was for Felicia Fibro because she wasn't able to do it herself, and her's said: "Hope is my future." I also had one that said "Hope for a cure" and the other one said "I long to be free again" which is a quote from a fantastic song written for awareness. Dan and I took them to the park and set them free. We clipped the strings from them, because I had read that those are the worst part for the environment. It was hard to take pictures of them as they flew away, but we did our best. Other then this adventure, I mostly posted lots of things on facebook and twitter.
Fibromyalgia is truly a debilitating disease. I am currently unable to find a job that my body can handle, and even though I now go to school online, that can be hard as well. The main parts of it are chronic fatigue and chronic pain, but honestly, that is just the beginning. Another big problem I have with it is the fibro fog. Someone can tell me something and I might forget it as soon as 5 minutes later, or sometimes something simple will really confuse me. It is very frustrating. I am only 22 years old and often feel as if I am at least 80. Fibromyalgia has taken many parts of my life away, and I can truly say that my life is not the same as it used to be.
Here is a link that might help you understand some symptoms: http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms
Do you still have more questions? Ask me, I'm always here and willing to answer.
Also, if you or a loved one suffers from Fibro, what did YOU do for awareness today?
Last, but by no means least, I wanted to share a video I made for Fibromyalgia & CFS/ME Awareness. It looks better on youtube though, so here is the link: Fibromyalgia & CFS/ME Awareness Video.
Saturday, April 30, 2011
Have you seen this?
In case you haven't seen it, I wanted to show you all the tattoo I got for Fibromyalgia awareness. A purple ribbon with the word HOPE also in purple. We all need to keep hope, keep hope that one day there will be a cure. And of course, we all need to keep hope in general.
Friday, April 1, 2011
There's Always More.
Well, I've been having more issues, but really are we surprised here?
I ended up having to go to FirstCare the other day because I was quite sick. I was dizzy, lightheaded, nauseous, unsteady, weak, felt dehydrated, etc. The doctor first thought I had developed diabetes, but my blood sugar was in normal range, so they then decided it must be side effects from the trazadone, since it had only been a week since I started. So on their instruction, I stopped the trazadone that night. Since it didn't really help with my sleep anyways, it wasn't that big of a deal. I felt better the day after, but now I'm starting to feel like that again. I have no idea what is wrong with me this time. And to be quite honest, I don't think anyone else does either. Back to my regular dr I will have to go at some point, oh boy.
Also at this last appointment, the doctor discovered that I had a heart murmur. He obviously must not of thought that it was anything to be overly concerned about, because all he told me to do was talk to my regular dr about it. But still, seriously, another thing wrong with me? *sigh*
Thursday, March 31, 2011
Not Quite As Bad As I Thought
So my doctor appointment didn't go quite as bad as I thought, though it still wasn't great by any long stretch of the imagination. I told him that I was not ok with the thought of weight loss surgery, and that I would rather try to lose the weight on my own. He didn't seem too pleased, but he agreed. We have a 6 month goal, and I need to try to get to a certain number by then. If I haven't, he wants me to reconsider the surgery. I told him I would, but I still don't think I'll ever go with it.
So I'm gonna try doing my DDR workouts again. I love that they have the workout mode, because it shows progress that I'm making, plus it's not as boring as most exercising can be. I'm still not excited though, because last time I tried this it made me feel so crappy. But I'm gonna try to start out very slowly and slowly build up.
I still didn't get my referral to the rheumy though. But he didn't necessarily say no. What happened was that he didn't even give me the chance. Once we discussed the weight thing, he pretty much assumed the appointment was over and left. But, his receptionist came up with the idea that I should call the rheumy's office and have them send the paperwork down to the dr. So I did just that. Not sure if it's gonna do any good yet, but we'll see.
Keep your fingers crossed for me!
So I'm gonna try doing my DDR workouts again. I love that they have the workout mode, because it shows progress that I'm making, plus it's not as boring as most exercising can be. I'm still not excited though, because last time I tried this it made me feel so crappy. But I'm gonna try to start out very slowly and slowly build up.
I still didn't get my referral to the rheumy though. But he didn't necessarily say no. What happened was that he didn't even give me the chance. Once we discussed the weight thing, he pretty much assumed the appointment was over and left. But, his receptionist came up with the idea that I should call the rheumy's office and have them send the paperwork down to the dr. So I did just that. Not sure if it's gonna do any good yet, but we'll see.
Keep your fingers crossed for me!
Tuesday, March 22, 2011
Nervousness
My next appointment with my regular doctor is tomorrow. I'm not usually nervous about my appointments, but this one I am.
At my last appointment, I asked him for a referral to a rheumatologist because my fibro is not even close to under control. My fatigue is ridiculous, not much of anything helps me sleep, and I'm constantly in pain. I have to do something to try and feel better, as much as I can. He basically flat-out refused and just told me I needed to have weight loss surgery, and that would cure about 90% of my fibro issues. This is complete bullshit! There are people who are very skinny that still have fibro, and besides, I've been losing weight slowly on my own anyways, and that's the healthier way to do it. This has frustrated me to no end.
It made me think that I should find a new doctor, which I have been trying to do. But, different factors, mostly my insurance, is making it incredibly difficult. Only certain doctors are covered, plus I'd have to switch to the new doctor right away, before I even got to talk to them. That makes me completely uncomfortable. What if a new doctor would be just as bad or worse? And all my referrals would be missed up, my scripts would be messed up, etc. So basically my insurance is just making a difficult situation even more difficult.
So tomorrow is my appointment with him. I am going to tell him that I am not doing the weight loss surgery. I've heard enough about it to scare me. And apparently you can't take your meds for a while after? No way. I refuse. I'd never function then. I'd have migraines 24/7, my trigeminal neuralgia would flare constantly, my anxiety level would be insane, I'd have so much pain, and would never sleep. No, I absolutely refuse. I don't know what he'll say or do after I tell him this. I want to ask again for the referral, but I don't know how to go about it. I don't know to convince him. *sigh*
At my last appointment, I asked him for a referral to a rheumatologist because my fibro is not even close to under control. My fatigue is ridiculous, not much of anything helps me sleep, and I'm constantly in pain. I have to do something to try and feel better, as much as I can. He basically flat-out refused and just told me I needed to have weight loss surgery, and that would cure about 90% of my fibro issues. This is complete bullshit! There are people who are very skinny that still have fibro, and besides, I've been losing weight slowly on my own anyways, and that's the healthier way to do it. This has frustrated me to no end.
It made me think that I should find a new doctor, which I have been trying to do. But, different factors, mostly my insurance, is making it incredibly difficult. Only certain doctors are covered, plus I'd have to switch to the new doctor right away, before I even got to talk to them. That makes me completely uncomfortable. What if a new doctor would be just as bad or worse? And all my referrals would be missed up, my scripts would be messed up, etc. So basically my insurance is just making a difficult situation even more difficult.
So tomorrow is my appointment with him. I am going to tell him that I am not doing the weight loss surgery. I've heard enough about it to scare me. And apparently you can't take your meds for a while after? No way. I refuse. I'd never function then. I'd have migraines 24/7, my trigeminal neuralgia would flare constantly, my anxiety level would be insane, I'd have so much pain, and would never sleep. No, I absolutely refuse. I don't know what he'll say or do after I tell him this. I want to ask again for the referral, but I don't know how to go about it. I don't know to convince him. *sigh*
Thursday, February 17, 2011
Trying To Be Normal
I've been trying to be "normal" lately, as in, doing all the things that other people can do. Dan and I have been doing some crazy cleaning because my mom is coming to visit. It's so exhausting. I've been way over-doing it lately, and seem to be in a flare most of the time. But what am I to do? Things have to get done whether I can do them or not. It doesn't matter. Dan can't do it all himself either. He has joint issues so he's in pain a lot too. We just have to do it, push ourselves, and end up making ourselves worse. It's my attempt at being normal, and I'm failing drastically.
In other news, I have been shaking a lot lately, like my fingers are shaking. I don't know what's up with that. Yesterday it was so bad that I actually felt sick. I ended up eating chocolate and drinking gatorade. I wasn't sure if it was low blood sugar or dehydration, so I tried them both. One or the other, or both, worked. My guess would be dehydration, because that happens to me a lot, plus I've never had trouble with blood sugar. So idk.
I'm back in PT for my knee. I'm seeing a new therapist because the last one was horrible and didn't even believe in fibro. This one believes in it and has experience in it, so I think it'll help. He wants to try this thing called "Instrument Assisted Soft Tissue Mobilization" because my tissue is all stuck and whatnot. Sure, I don't care at this point, just make me better lol.
Ok, I guess that's it for now. Sorry it's been so long since an update, I'll try to do better.
In other news, I have been shaking a lot lately, like my fingers are shaking. I don't know what's up with that. Yesterday it was so bad that I actually felt sick. I ended up eating chocolate and drinking gatorade. I wasn't sure if it was low blood sugar or dehydration, so I tried them both. One or the other, or both, worked. My guess would be dehydration, because that happens to me a lot, plus I've never had trouble with blood sugar. So idk.
I'm back in PT for my knee. I'm seeing a new therapist because the last one was horrible and didn't even believe in fibro. This one believes in it and has experience in it, so I think it'll help. He wants to try this thing called "Instrument Assisted Soft Tissue Mobilization" because my tissue is all stuck and whatnot. Sure, I don't care at this point, just make me better lol.
Ok, I guess that's it for now. Sorry it's been so long since an update, I'll try to do better.
Friday, August 27, 2010
"Misunderstood" by Mark Emmins (Fibro/CFS Song)
This is an amazing song called "Misunderstood" by Mark Emmins that he wrote for CFS/ME awareness. It applies to Fibro quite well too though. I wanted to share it with all of you, enjoy!
The scars may not show
But the wounds are so deep
Sometimes you never truly see
The pain someone feels
Trapped in the darkness in search of the light
Yet the soul needs to feed
Praying for life to return for me
It's no stranger to you and me
Just want security
It hurts to be touched
And our batteries drained
Confined to the house
Yet our hearts keep on beating
It's not in the mind as our life slips away
Just misunderstood
Just wish for the simple things in life
But you know that's so damn hard
It's so damn hard
Stuck in the darkness but seeking the light
Yet the soul needs to feed
Praying for life to return for me
Loss of hope and loss of friends
I long to be me again
Counted bricks on the walls a million times
Suffering souls
The thing to remember is we're not alone
A simple smile is a giant thing
I long to me again
I long to be free of pain
I long to be free again
It's not in the mind as our life slips away
Just misunderstood
You can't see from outside what's so deep within
Just want security
It's no stranger to you and me
The scars may not show
But the wounds are so deep
Sometimes you never truly see
The pain someone feels
Trapped in the darkness in search of the light
Yet the soul needs to feed
Praying for life to return for me
It's no stranger to you and me
Just want security
It hurts to be touched
And our batteries drained
Confined to the house
Yet our hearts keep on beating
It's not in the mind as our life slips away
Just misunderstood
Just wish for the simple things in life
But you know that's so damn hard
It's so damn hard
Stuck in the darkness but seeking the light
Yet the soul needs to feed
Praying for life to return for me
Loss of hope and loss of friends
I long to be me again
Counted bricks on the walls a million times
Suffering souls
The thing to remember is we're not alone
A simple smile is a giant thing
I long to me again
I long to be free of pain
I long to be free again
It's not in the mind as our life slips away
Just misunderstood
You can't see from outside what's so deep within
Just want security
It's no stranger to you and me
Wednesday, May 12, 2010
Fibromyalgia Awareness Day
So, today is May 12th, Fibromyalgia Awareness Day. (And as a sidenote, I'm annoyed that I just had to add fibromyalgia to my computer's dictionary.)
I'm not doing much for awareness this year. I have my awareness t-shirt on, but I'm not really leaving the house today. I have no real need to. Last year, I cut up ribbons and made purple ribbons and passed them out to various places. Could of done that this year, but quite frankly, I just don't have the energy.
Ahhh fibro. What to say about it? What to say about a disease that has literally taken my life away? A disease that has made me feel much older then I am? A disease that has changed everything I've ever known?
It has completely and absolutely changed everything for me. I'm 21 years old, and most days I feel like I am at least 80. I have a hard time going out or doing fun things that I used to do, my body just can't handle it. I'm in constant pain, worse pain then I could have ever even imagined before it, and am so exhausted, no matter how much or how little I sleep. My life is not my own anymore, it has been taken over by some kind of horrible monster. A monster who has taken my life away, and left me with this, which sometimes I can't even call a life. Most days it just doesn't feel like it.
But I'm not gonna give up. I can do this. There is hope. I must remember that. Someday, things will get better. Right?
#Fibromyalgia Awareness Day 2010
I'm not doing much for awareness this year. I have my awareness t-shirt on, but I'm not really leaving the house today. I have no real need to. Last year, I cut up ribbons and made purple ribbons and passed them out to various places. Could of done that this year, but quite frankly, I just don't have the energy.
Ahhh fibro. What to say about it? What to say about a disease that has literally taken my life away? A disease that has made me feel much older then I am? A disease that has changed everything I've ever known?
It has completely and absolutely changed everything for me. I'm 21 years old, and most days I feel like I am at least 80. I have a hard time going out or doing fun things that I used to do, my body just can't handle it. I'm in constant pain, worse pain then I could have ever even imagined before it, and am so exhausted, no matter how much or how little I sleep. My life is not my own anymore, it has been taken over by some kind of horrible monster. A monster who has taken my life away, and left me with this, which sometimes I can't even call a life. Most days it just doesn't feel like it.
But I'm not gonna give up. I can do this. There is hope. I must remember that. Someday, things will get better. Right?
#Fibromyalgia Awareness Day 2010
Tuesday, April 20, 2010
Not Feeling It.
I haven't written in here in forever. This is very hard to keep up with, I don't know why. But I just never seem to have the time or energy to write in this.
Anyways, I had tremendous nerve pain for a while, my I had a tooth where a piece was broken off and the nerve was exposed. It caused the worst pain I have ever had in my life. I even ended up in the ER one night because the pain was so bad. They numbed the nerve which was the best thing for me. It gave me one night of sleep at least. I didn't sleep for like a week because the pain was so bad. Anyways, today I finally had the tooth pulled, so I'm hoping that'll be the end of the pain.
Work is getting too much for me, physically. I am in so much pain and so exhausted after a shift. And I don't know what to do about it. I can't stop working, because if I do we won't have enough money to live. But if I keep working, I just keep getting sicker and sicker. Fibro is not usually a condition that worsens, but I'm convinced mine is. What I really need is some sort of desk job or work at home job or something, but I'll be damned if I find anything.
*sighs* I'm just not happy with the way life is going lately.
Anyways, I had tremendous nerve pain for a while, my I had a tooth where a piece was broken off and the nerve was exposed. It caused the worst pain I have ever had in my life. I even ended up in the ER one night because the pain was so bad. They numbed the nerve which was the best thing for me. It gave me one night of sleep at least. I didn't sleep for like a week because the pain was so bad. Anyways, today I finally had the tooth pulled, so I'm hoping that'll be the end of the pain.
Work is getting too much for me, physically. I am in so much pain and so exhausted after a shift. And I don't know what to do about it. I can't stop working, because if I do we won't have enough money to live. But if I keep working, I just keep getting sicker and sicker. Fibro is not usually a condition that worsens, but I'm convinced mine is. What I really need is some sort of desk job or work at home job or something, but I'll be damned if I find anything.
*sighs* I'm just not happy with the way life is going lately.
Sunday, February 28, 2010
A Letter From Fibromyalgia
A LETTER FROM FIBROMYALGIA
Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am 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 anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those 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 ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, 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, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.
Have a nice day!! (ROFL),
Fibromyalgia
Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am 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 anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those 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 ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, 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, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.
Have a nice day!! (ROFL),
Fibromyalgia
Saturday, December 26, 2009
Fibro Feelings
How Does FMS Make Me Feel?
From: http://oldghostshome.com/fibro.html
From: http://oldghostshome.com/fibro.html
- My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot 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 VERY real.
- 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.
- 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 (Young people can get fibro) 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.
- 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.
- 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.
- My intolerance - I can't stand heat, either. Or humidity. If I am a man, I may 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.
- 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, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
- 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.
- 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. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.
- 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 filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.
- 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.
- 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 thought this was great and worth sharing!)
Monday, November 30, 2009
Ignorance.
So I had a Neurologist appointment today, and this is the guy who is supposed to be an "expert" in all of this sort of stuff, meaning fibro and all.
First off, I waited for 40 minutes because he was behind. (As per usual.) He finally comes in and asked me how I was doing and blah blah blah. He then told me to keep moving and keep pushing myself because my body will get used to it and build tolerance. And that was pretty much it. Literally a 5 minute appointment.
Now, the whole pushing yourself so that your body builds tolerance thing makes sense for the normal person. But let me say, if you know anything about fibro, you are NOT supposed to overdo it, because you can make yourself sicker. Or even worse, hurt yourself. What does this guy think? Does he really know NOTHING about fibro? Is he really that ignorant?
I guess its time to do some doctor searching again. *sigh*
First off, I waited for 40 minutes because he was behind. (As per usual.) He finally comes in and asked me how I was doing and blah blah blah. He then told me to keep moving and keep pushing myself because my body will get used to it and build tolerance. And that was pretty much it. Literally a 5 minute appointment.
Now, the whole pushing yourself so that your body builds tolerance thing makes sense for the normal person. But let me say, if you know anything about fibro, you are NOT supposed to overdo it, because you can make yourself sicker. Or even worse, hurt yourself. What does this guy think? Does he really know NOTHING about fibro? Is he really that ignorant?
I guess its time to do some doctor searching again. *sigh*
Wednesday, October 28, 2009
Frustrated
Oh man. Frustrated isn't even a strong enough word to describe how I'm feeling right now. But I'm not sure if I can even come up with a word that IS strong enough.
This week has been the week from hell. And it's only Wednesday. It needs to stop. Like right now. I honestly don't know how much more of I can take. I just really really really don't know. I've been in SO much pain and SO tired and just generally miserable. It's been like this since Sunday. And today with the rain it's been even worse.
I went to the doctor today, which was not much help as usual. He is just stumped and doesn't know what else to do. I have either been on or am on everything he can think of, not just including FDA approved fibro meds.
Too much pain to even finish this. Just wanted to quickly update.
<3
This week has been the week from hell. And it's only Wednesday. It needs to stop. Like right now. I honestly don't know how much more of I can take. I just really really really don't know. I've been in SO much pain and SO tired and just generally miserable. It's been like this since Sunday. And today with the rain it's been even worse.
I went to the doctor today, which was not much help as usual. He is just stumped and doesn't know what else to do. I have either been on or am on everything he can think of, not just including FDA approved fibro meds.
Too much pain to even finish this. Just wanted to quickly update.
<3
Friday, October 23, 2009
Unwell - Matchbox 20
[This song was not written about someone with a chronic illness, but if you look at it from that point of view, it definitely makes alot of sense. Or maybe that's just me.]
All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something
Hold on
Feeling like I'm headed for a breakdown
And I don't know why
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be...me
I'm talking to myself in public
Dodging glances on the train
And I know, I know they've all been talking about me
I can hear them whisper
And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow I've lost my mind
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be
I've been talking in my sleep
Pretty soon they'll come to get me
Yeah, they're taking me away
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be
Yeah, how I used to be
How I used to be
Well, I'm just a little unwell
How I used to be
How I used to be
I'm just a little unwell
All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something
Hold on
Feeling like I'm headed for a breakdown
And I don't know why
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be...me
I'm talking to myself in public
Dodging glances on the train
And I know, I know they've all been talking about me
I can hear them whisper
And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow I've lost my mind
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be
I've been talking in my sleep
Pretty soon they'll come to get me
Yeah, they're taking me away
But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be
Yeah, how I used to be
How I used to be
Well, I'm just a little unwell
How I used to be
How I used to be
I'm just a little unwell
Tuesday, September 29, 2009
Savella and Pain Update
Ok. So here is an update on I've been feeling and such lately.
The Savella has been interesting. When I first went up to full dose, I had weird side effects, and what I called a "shifty" feeling. It was a really horrible day. But it got better and started to go away, so I felt better and continued the dose.
I feel like the Savella is helping with the pain. I really do. It was rainy here the past couple of days and even that didn't make immense pain like it usually does. It could be a coincedence, but I really don't think it is. And even on normal days, I don't feel as much pain. I am still sore, but not really in pain as much, if that makes any sense.
The problem I have found with stopping the Cymbalta to switch to Savella though has been my emotions. I'm like a rollercoaster. Not an extreme one though. But sometimes I just seem to get really anxious or whatever, and up freaking out/crying. I've always had anxiety though, and I think the Cymbalta was helping it. The Buspar I'm on doesn't seem to do much of anything for my anxiety anymore. But I don't like these random crying "fits," they aren't like me at all.
So there's the update on how I've been feeling and such. Have a doctor appointment tomorrow. Dr. Winn wants to check my fibro tender points and see if the Savella is helping, and he is gonna give me some free samples of it to save me money. I'm so glad he's so good with giving me samples!
That's it for now...hope everyone is doing well! <3
The Savella has been interesting. When I first went up to full dose, I had weird side effects, and what I called a "shifty" feeling. It was a really horrible day. But it got better and started to go away, so I felt better and continued the dose.
I feel like the Savella is helping with the pain. I really do. It was rainy here the past couple of days and even that didn't make immense pain like it usually does. It could be a coincedence, but I really don't think it is. And even on normal days, I don't feel as much pain. I am still sore, but not really in pain as much, if that makes any sense.
The problem I have found with stopping the Cymbalta to switch to Savella though has been my emotions. I'm like a rollercoaster. Not an extreme one though. But sometimes I just seem to get really anxious or whatever, and up freaking out/crying. I've always had anxiety though, and I think the Cymbalta was helping it. The Buspar I'm on doesn't seem to do much of anything for my anxiety anymore. But I don't like these random crying "fits," they aren't like me at all.
So there's the update on how I've been feeling and such. Have a doctor appointment tomorrow. Dr. Winn wants to check my fibro tender points and see if the Savella is helping, and he is gonna give me some free samples of it to save me money. I'm so glad he's so good with giving me samples!
That's it for now...hope everyone is doing well! <3
Sunday, September 27, 2009
Fibromyalgia Pronounced "Real Disease"
Fibromyalgia Pronounced "Real Disease"
Neurologic signs common with fibromyalgia
Last Updated: 2009-09-22 13:01:04 -0400 (Reuters Health)
By Michelle Rizzo
NEW YORK (Reuters Health) - Fibromyalgia isn't
all in your head, new research suggests.
In a study, researchers found that people with fibromyalgia were more likely than those without the chronic pain condition to have poor balance, tingling and weakness in the arms and legs, and other "neurologic" signs and symptoms.
Fibromyalgia, a debilitating pain syndrome that affects 2 to 4 percent of the population, is characterized by chronic pain, fatigue and difficulty sleeping. It's a somewhat mysterious condition with no clear-cut cause. Many people with fibromyalgia have faced the question of whether the condition is real.
The new findings, reported in the latest issue of Arthritis and Rheumatism, support a growing body
of literature suggesting that the condition is real and also support the possibility that a "neuroanatomical" cause may underlie fibromyalgia.
Dr. Nathaniel F. Watson, of the University of Washington Medicine Sleep Institute at Harborview, Seattle, and colleagues studied 166 people with fibromyalgia and 66 pain-free controls.
All of them were examined by a neurologist who was unaware of their disease status. All study participants also completed a standard questionnaire on neurologic symptoms.
In 27 of 29 neurological categories tested, significantly more neurologic symptoms were seen in the fibromyalgia group than in the control group, Watson and colleagues found.
The greatest differences were found for light sensitivity, or "photophobia," seen in 70 percent of fibromyalgia patients but in only 6 percent of pain-free controls; poor balance, which plagued 63 percent of fibromyalgia patients but only 4 percent of controls; and weakness and tingling in the arms or legs, seen in more than half of fibromyalgia patients but in only around 4 percent of controls.
In addition, those with fibromyalgia had greater dysfunction than controls in certain nerves in the brain. They also had more "sensory" problems, motor abnormalities and gait problems.
Within the fibromyalgia group, there were significant correlations between several neurologic signs and symptoms. For example, numbness in any part of the body or tingling in the arms or legs correlated with neurologic test findings. Poor balance, poor coordination and weakness in the arms or legs also correlated with objective findings on neurologic tests.
These observations, Watson told Reuters Health, underscore the need for "careful neurological examinations in all fibromyalgia patients, particularly those with neurological complaints."
Watson cautioned that this study does not confirm a neuroanatomical basis for fibromyalgia and that
much more work is necessary before this can be known with certainty.
SOURCE: Arthritis and Rheumatism, September 2009.
Copyright © 2009 Reuters Limited.
Neurologic signs common with fibromyalgia
Last Updated: 2009-09-22 13:01:04 -0400 (Reuters Health)
By Michelle Rizzo
NEW YORK (Reuters Health) - Fibromyalgia isn't
all in your head, new research suggests.
In a study, researchers found that people with fibromyalgia were more likely than those without the chronic pain condition to have poor balance, tingling and weakness in the arms and legs, and other "neurologic" signs and symptoms.
Fibromyalgia, a debilitating pain syndrome that affects 2 to 4 percent of the population, is characterized by chronic pain, fatigue and difficulty sleeping. It's a somewhat mysterious condition with no clear-cut cause. Many people with fibromyalgia have faced the question of whether the condition is real.
The new findings, reported in the latest issue of Arthritis and Rheumatism, support a growing body
of literature suggesting that the condition is real and also support the possibility that a "neuroanatomical" cause may underlie fibromyalgia.
Dr. Nathaniel F. Watson, of the University of Washington Medicine Sleep Institute at Harborview, Seattle, and colleagues studied 166 people with fibromyalgia and 66 pain-free controls.
All of them were examined by a neurologist who was unaware of their disease status. All study participants also completed a standard questionnaire on neurologic symptoms.
In 27 of 29 neurological categories tested, significantly more neurologic symptoms were seen in the fibromyalgia group than in the control group, Watson and colleagues found.
The greatest differences were found for light sensitivity, or "photophobia," seen in 70 percent of fibromyalgia patients but in only 6 percent of pain-free controls; poor balance, which plagued 63 percent of fibromyalgia patients but only 4 percent of controls; and weakness and tingling in the arms or legs, seen in more than half of fibromyalgia patients but in only around 4 percent of controls.
In addition, those with fibromyalgia had greater dysfunction than controls in certain nerves in the brain. They also had more "sensory" problems, motor abnormalities and gait problems.
Within the fibromyalgia group, there were significant correlations between several neurologic signs and symptoms. For example, numbness in any part of the body or tingling in the arms or legs correlated with neurologic test findings. Poor balance, poor coordination and weakness in the arms or legs also correlated with objective findings on neurologic tests.
These observations, Watson told Reuters Health, underscore the need for "careful neurological examinations in all fibromyalgia patients, particularly those with neurological complaints."
Watson cautioned that this study does not confirm a neuroanatomical basis for fibromyalgia and that
much more work is necessary before this can be known with certainty.
SOURCE: Arthritis and Rheumatism, September 2009.
Copyright © 2009 Reuters Limited.
Saturday, September 12, 2009
Complaining
Ok, so this post needs to be done, because I can't stop complaining lately it seems, so maybe if I get it out on here, it will help me shut up about it! lol.
But seriously, I just haven't been feeling life lately. I feel so crappy most of the time, whether its extreme fatigue, extreme pain, or both. I feel like my body and my life is not my own anymore. It's like it has been taken over by some horrible creature or something. I have so many ambitions for things I want to do, and then never ever seem to have the energy to complete them. Sometimes even simple things like getting out of bed is too much for me. What kind of life is this? Seriously, what did I do to deserve such a horrible thing happening to me?
I'm not one who wants people to feel sorry for me, or to pity me, I'm really not. But sometimes I just wish people would understand. People just don't understand what its like. And so many people think that its just all in our heads. I WISH! I wish it was something all in my head so that I could just go to a psychiatrist, get counseling and medication, and then it would all be gone! That's so much better then knowing you have to live with this for the rest of your life.
And while I'm on that topic, isn't that just a cheery thought? I have no real hope for this to get better or to go away. I try to remain hope that they will find a cure or just an effect treatment in my lifetime, but really, what if they don't? I have to live like this the rest of my life? How is that even living? I know I sure don't feel like I'm living most of the time.
I want help, and I need help. I need to go see specialists. Too bad that the closest one to me is forever away and not covered by insurance. No way in this world I can afford that. So oh well. I'm just stuck. Stuck living a life that I don't want. Honestly, all I really want is my life back, is that really too much to ask?
But seriously, I just haven't been feeling life lately. I feel so crappy most of the time, whether its extreme fatigue, extreme pain, or both. I feel like my body and my life is not my own anymore. It's like it has been taken over by some horrible creature or something. I have so many ambitions for things I want to do, and then never ever seem to have the energy to complete them. Sometimes even simple things like getting out of bed is too much for me. What kind of life is this? Seriously, what did I do to deserve such a horrible thing happening to me?
I'm not one who wants people to feel sorry for me, or to pity me, I'm really not. But sometimes I just wish people would understand. People just don't understand what its like. And so many people think that its just all in our heads. I WISH! I wish it was something all in my head so that I could just go to a psychiatrist, get counseling and medication, and then it would all be gone! That's so much better then knowing you have to live with this for the rest of your life.
And while I'm on that topic, isn't that just a cheery thought? I have no real hope for this to get better or to go away. I try to remain hope that they will find a cure or just an effect treatment in my lifetime, but really, what if they don't? I have to live like this the rest of my life? How is that even living? I know I sure don't feel like I'm living most of the time.
I want help, and I need help. I need to go see specialists. Too bad that the closest one to me is forever away and not covered by insurance. No way in this world I can afford that. So oh well. I'm just stuck. Stuck living a life that I don't want. Honestly, all I really want is my life back, is that really too much to ask?
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