Tuesday, September 29, 2009

Beauty in the Midst of Pain.

Once again, yesterday was one of those damp, chilly, gray, rainy, days. If you are a fibromite you can empathize with the pain and stiffness I was feeling. I spent most of my day laying on my sofa, dozing in and out, and doing what I needed to do, and not much else.
My 11 year old son had been down the street where most of the kids hang out, under his friends porch roof, or at the playground inside one of those plastic tunnels. Obviously, when he got home, after riding his bike in the rain, he was soaking wet. He came running in the house all excited for us to come outside "quick", "There's a rainbow, and it starts right in the park across the street!!". He was so excited, there was no way I could ignore him and not go out to see it, I have no regrets for doing so. As a matter of fact, I am glad I went out to see it. It was one of the biggest, clearest, most beautiful rainbows that I have seen in a very long time.
It was very wide, all of it's colors very clear and distinct. It arched over the house next door, and it did look like it started in the woods of the park across the street. My son and I were talking about the colors being so clear, so I taught him the ROY G. BIV acronym for remembering the colors of a rainbow. Red, Orange, Yellow, Green, Blue, Indigo, Violet. This was the perfect rainbow to show him this since the colors were so clear and distinct. Not only did it give me a few minutes of quality time with my son, but it also reminded me of something else. The story of Noah's Ark in the Bible.
In the Bible, God created the Rainbow to represent the covenant he made with Noah. After the 40 days and 40 nights of rain that wiped out every living thing on earth, except the people and creatures on the Ark, God promised Noah that never again would he punish the human race in this way. To seal the covenant, God produced a beautiful rainbow and told Noah to pass this on to his people, that this is the symbol of the promise he had made.
It reminded me, that no matter how bad I am feeling, God is always there with some sign of  beauty to remind me that he is with me and he will give me the strength I need to get through anything. I remembered the sign that he gave to Noah, that he would not make the human race suffer in that way again. I believe, he also sent this sign as a way for us to remember his presence in our lives. How else could something so beautiful come from such a miserable dreary day.
Thank you God for that moment of beauty that took me out of myself and offered me the opportunity to be with my son, sharing your promise.

Soft Hugs to All,
Laurie D.

Sunday, September 27, 2009

Wonderful Web-site Fibromyalgia.

As I have posted in the past, I spend alot of time researching Fibromyalgia (FM) it's origin, symptoms, treatments and any other information I can find to try to help myself as well as post what I can on here to hopefully help others and raise awareness of how "Real" this illness is.

http://www.fibromyalgia-symptoms.org/ is a wonderful sight for inforation ranging from "What is Fibromyalgia" to "Common Myths and Mis-conceptions about Fibromyalgia" and everything in between.

This site covers topics that are specific to different people, such as "Men with FM", "Pregnancy with FM" "Children with FM" and many other topics.

It is thorough, clear, concise, and informative.  Please check it out. You may find answers to some questions you may have been afraid to ask.

Soft Hugs to All
Laurie D.

Fibromyalgia research. Fibro-fog has been proven and growth hormones and fibro

Seems that studies have confirmed that changes in the brain of fibro sufferers not only affect perception of pain, but also memory! Fibro fog has now been PROVEN!


Also, growth hormone in people with fibro are at lower levels then they should be. Results of treating fibro patients with growth hormones had great results (though I can't find the link now).


Family Get-together.

Hi everyone,
I had a family get-together to go to today that was a "command performance" as my mother would put it. At first I was dreading this day. I was so afraid I was going to be sick or in alot of pain. My mother has a hard time dealing with my illness, and so does some of my family. They feel I am doing this for attention. When I asked my mother how I managed to fake the MRI's that also showed degenerative joint disease, degenerative spinal disease, herniated and bulging discs in my cervical and lumbar spine, and the blood work that found Epstein-Barr, hepatitis-C, lyme's disease, or the sleep studies that showed Sleep Apnea and Restless leg syndrome. All of this, not to mention the fact that she is the one that suggested I see someone about possibly having fibromyalgia, it just started a big fight. This was a few weeks ago. So you can see why I was not looking forward to today. Especially after she called me, and told me I have to come "bouncing" in to my neices house and to be "peppy" and "perky" no matter how I feel, it just put more pressure on me.
It helped to talk to my sister, and we laughed about the possibility of me EVER being "peppy and perky". As a teenager I took dark, and miserable to a new level. These "Goth" kids can't even hold a candle to how miserable I was. Which is why we were laughing. This really helped to make me feel more comfortable about today.
Anyway, I did have a really bad migraine this morning, but I took something early and it went away. The first one this week that actually went away. We went to my neices house, and we sat around the livingroom and talked and laughed. and had a good time. My mother insisted that I had to sit upstairs with her and the other girls of the family, so I missed an awesome Eagles Football game. Apparently my Eagles had a phenominal game. I guess missing the game is a small price to pay to make my mother happy. She was really happy when we were driving home that it was a good day.
I have to thank God for today. I haven't felt good for several days now. And for me to feel good today, of all days. Is a miracle. It just goes to show that God does for us what we can't do for ourselves.
Another thing that was nice about today. My neice made everything that my grandmother used to make. Her homemade "meat pie" with extra sauce on the side to pour over it, and a dish that I can't remember the name, but I love, is Fried onions, with noodle dumplings, and some cheese all fried together until it is slightly browned. Needless to say, nothing was really healthy or good for you, which expains the intense heartburn that I have right  now. Thank God for Maalox!! We also had shrimp and crabdip that my sister made. Oh my God was that good. Then of course the table full of deserts, especially the chocolate pudding pie. I think that is what finally did me in.
All in all, we had a good day. I haven't been able to say that for a while, and it feels good. Oh, I don't want to forget to mention I got to see both of my daughters today as well. I don't get to see them as often as I would like to, so any chance I get to spend with them is a blessing for me.
And, of course I had to hand out AVON brochures to everyone. If I can't count on my family to help me get this started, who can I count on. Right.
I hope you all had a good day, if not I  pray you will have one soon.
Soft Hugs to All.
Laurie D.

Thursday, September 24, 2009

Tremendous Flare Day.

I am having a horrible day. I have been in a flare since yesterday. Of course, with everything I have going on, I have only had a little time to rest. Not only has the fibro gotten to me, but the CFS is really bad. I was talking to my son this morning, and while I was talking to him I was also eating a couple of cookies. I was actually falling asleep while I was talking and eating. He knew right away that I had been pushing myself. He said "Mom, your not pacing yourself again are you?... You know you can't push yourself like this, so today, since I am home, I am going to make sure you rest." He's 17, and such a good kid. Both of my boys are really good about noticing when I am having a flare or just a bad day. My girls are grown and don't live here, so they are not as in tune as the boys are.
I was up and down all night (Again) in alot of pain, and spent most of the day in pain and extremely tired. I had an appointment today to go get my flu shot and to get an EKG, so I had to push myself to get up and get dressed to go to the doctor.
Just an FYI for anyone who is taking methadone for pain on a regular basis, you need to get regular EKG's to make sure the methadone is not having an effect on your heart, It shows up on the "bands" on the EKG and if the "bands" start to widen, the doctor needs to taper you off of methadone and try something else. I never knew this until I started seeing my current pain management specialist. He insists that I keep up with my EKG's. Todays was normal, as they have been.
On the way home from the doctor, I fell asleep in the car. I had planned on going right back to sleep when I got home, but that wasn't going to happen. I am getting agravated again with my husband. He has been leaving his mess around, and if I don't clean it up, it never gets cleaned up. I had to come home and clean up the kitchen, and pick up his dirty clothes that he left on the bathroom floor. (He thinks the floor is his personal hamper). We addressed this issue a few weeks ago with our therapist, and true to his nature, he was really good for about 2 weeks, and then he fell right back into his old habits again. I have been keeping a log of what, when, and who does things around the house to take with us to therapy next time.
I wanted to make sure I popped in here to post tonite. I don't want to go to long without posting.
I also need to figure out how to link this blog to the blog on my AVON web-site. I'm not sure how to do it, but I will eventually figure it out.
I think that is all I can really type right now. I'm sorry. I want to try to get a post on here about CFS and other problems that come with fibro. But, lately, I've been too tired or in too much pain to do so.
I'm sorry.
Soft Hugs to All,
Laurie D.

Tuesday, September 22, 2009

Over extending myself AGAIN.

I have a really bad habit of pushing myself and over-extending myself on days that I feel OK. Then, I pay for it later. Well, I'm paying for it. My son is really getting on me today about learning to pace myself. He is such a good kid, he really does his best to get me to sit down and pace myself, but at the same time try to get in some light exercise.
Yesterday, I had an afternoon appointment with an Avon representative. She was coming to my house, so of course I wanted to make sure everything was in order. That part was easy enough, until my husband decided it would be a good day to do some laundry. I wanted to kill him. My washer is in my kitchen, so we have to seperate the clothes on the living room floor. When I came out of the shower and saw piles of laundry on the floor I flipped my lid. He promised me he would get it all cleaned back up before she got here, and he did. But, I had to go nuts and try to help him get as much of it out of the way as possible.
The meeting went really well, My husband and I decided to start an Avon business to bring in some extra money. The bills are coming in before we get the paychecks these days. Hopefully this will help us a little.
Today, I was really tired and all I wanted to do was sleep, and I also woke up with a lot of pain. I took a short nap, but then I had to go on-line and get the Avon web-site all set up. It took alot more work than I thought it would. I also took my oldest son to a job interview today. I should say I went with him and sat in the car. He only has a learners permit, so he needs a lisenced driver to go with him. I also had to maintain the regular household chores.
Put all this together, and I am one big wreck. My entire body aches as well as my head. I feel exhausted and just want to sleep. I can't go to bed until 10 PM, after my husband gets up and leaves for work.
I also wanted to make sure I popped in here to post something since I didn't get on yesterday.
Hopefully, I will have something positive or of some interest to post soon.
Soft Hugs to All.
Laurie D.

Sunday, September 20, 2009

Great web-site for support.

I was directed to this web-site by a member of the National Fibromyalgia Associations discussion board on FaceBook. I thought it was a great place for information and support.

It is Dear Marylin.com....When you need a shoulder to cry on.

You will find the "letter of the week" at:

From here, you can go to the home page to check out the entire site.

I hope you can find some helpful information there.

Soft Hugs to All.
Laurie D.


I am not sure what is going on with me today. I feel irritable for no reason. I don't just mean a little cranky, but down right "I want to punch something" irritable. Nothing unusual is going on that could have triggered it. My oldest son is away for the weekend (coming home tonite), my younger son has been out back most of the day at the neighbors house. My husband has been down for 2 days with "flu like" symptoms, so he has been doing alot of sleeping most of the day. I haven't gotten any nasty phone calls or letters. Nothing that I can figure out that would make me feel this way.
It's driving me crazy. I finally took a Xanax to help me calm down, but it still hasn't helped me. I took it over 45 minutes ago. It should have helped by now.
I had surgery about 5 years ago to stop my menstrual cycle, and I haven't had PMS symptoms in years. It's a nice warm, sunny day, not too hot, not too cold, just a very nice day. With that said, I haven't had much pain today. So it's not pain that is setting it off.
I would appreciate any feedback from anyone about this. If you have experienced symptoms like this, please let me know. Please tell me what you do to stop feeling this way.
Soft Hugs to All
Laurie D.

Saturday, September 19, 2009

Chronic Fatigue, headaches, and hunger.

This has been an odd day for me. Like most fibromites, I suffer from the oxymoron of being an insomniac with chronic fatigue. A usual day for me consists of not being able to fall asleep, waking frequently during the night when I do fall asleep, and feel very fatigued through out the day. I generally will take a short nap during the afternoon.
Headaches: I used to suffer from extremely severe migraine headaches. It reached a point where I needed to be hospitalized after recieving occipital nerve blocks that did not work. While in the hospital, I went through 4 days of recieving a series of Hydroergotomine treatments. An IV is put in your arm, and every 10 hours you recieve 3 medications. Benadryl, (I can't remember what the second drip was), and then the Hydroergotomine. This worked wonders. I have not had as many migraines, and the ones I have had have not been as severe as the ones in the past. And, the few I do get are easily treated.
Hunger: Normally, since my fibro has gotten worse, I can't stand the smell of food, the taste of food, and I have had little to no appetite. Also, migraines make me nauseas, so I never feel like eating when I have one. I usually can't keep any food down when I have a migraine. Making this symptom that much stranger.
Why am I giving you this background? I want to show you what I am normally like, to show you why this has been an odd day.
As far as my insomnia and chronic fatigue, I have not been able to keep my eyes open for most of the day. All I want to do is sleep. Thank God, my husband and youngest son were on a boyscout trip, and my oldest son is away for the weekend. I was able to just go to bed and sleep all day. Only to get up to use the bathroom.
This is where the headaches and hunger come in. When I wake up, I've had fierce migraine headaches, and taking my medication for them, is barely touching them. I am also EXTREMELY hungry. I feel like I can't get enough to eat. Since I am trying to lose weight, I am making sure I eat things like granola bars with fiber, a cup of yogurt, or whole grain cereal.
I have no idea why the change in my system. I'm certainly not complaining about being able to sleep, God knows I need it. But, I could do without the migraine and the fierce appetite.
I would like to know if anyone else has experienced anything like this. If you have, please comment and let me know. Perhaps you've figured out why the change has occurred, and what you have done for the headaches and the hunger.
Please, any input would be more than welcome.
Soft Hugs to All,
Laurie D.

Friday, September 18, 2009


I am posting this for Invisible Chronic Illness Awareness Week. Go to http://www.invisibleillnessweek.com/ for more information and blogs.

This was passed on to me from one of my friends in my fibro group. I know that there is so much that no one knows or understands about what I go through or the other many many people in the world who suffer from this condition. I try not to send too much stuff out, not trying to make anyone feel sorry for me, because this is just a fact of life to me now, but because there is still so little known about this condition and it's hard for me to explain some thing that I don't understand but has taken over my life nevertheless. This has been one of the best things that has explained it that I have read so I thought I would pass it on. Love to all.....


How I Differ From You - Awareness

For anyone who suffers, or know someone who suffers, from Fibromyalgia:

1. My pain - My pain is not your pain. It is not cause d 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 fibro fog. 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 stair wells 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 short coming 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. Every day 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 appetite 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 or that I have been cured . 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 would n't want to spend even a day in their shoes . ..or their bodies!

Author unknown

Wednesday, September 16, 2009

First illness of the new school year.

Every year, it is inevitable, that one of my kids, usually my youngest, is going to come home from school with some type of virus that he was exposed to at school. Well, we are only 2 weeks into the school year and it has already started.
My youngest wasn't feeling well on Monday, so we kept him home from school. Yesterday, he went to school, only to have the nurse send him home with a fever. The new criteria for children with  fevers has gotten very strict since the Swine Flu outbreak. Now, if a student is sent home with a fever, they are not allowed to come into school the next day. They must be fever free for 24 hours. Today, my oldest son, who rarely gets sick, came to me this morning after vomitting and not feeling well.
How does this relate to me and fbromyalgia. Any time I am exposed to any type of virus, I feel worse than I would on a regular flair up.
Today, I feel horrible. I have been in extreme pain all day. Deep muscle pain, joint pain, pain in my back and neck, burning sensation on my skin, upset stomach, profuse sweating, weakness and fatigue. I'm not sure if this has anything to do with the illness that my kids have or not. It is also a gray, dreary, chilly, rainy day here, and this is a prime recipe for a flair up.
I have spent most of my day on the sofa, dozing in and out. My husband came home from work this morning and made a pot of homemade chicken soup since everyone is sick. My stomach is so upset that I can't even tolerate drinking the broth.
My hands hurt and are shaking so much, that I am having trouble typing this post. I have to keep going back to correct errors.
It is very common for someone with fibromyalgia to feel worse than a healthy person when exposed to a virus. Not only do you have to deal with the symptoms of the virus, but it usually activates a fibro-flair as well.
I am hoping to find some relief tonite by soaking in a hot tub and then trying to go to bed as early as possible. Although I doubt very much I will sleep all the way through the night, I usually sleep for about 2 hours at a time and find it hard to fall back to sleep right away.
Hopefully, this is a short lived bug, if that is the problem.

Soft Hugs to All,
Laurie D.

This Fibromite dork is proud of herself.

Hello everyone.
This is a little information about me. I am a computer dork! I am technologically impaired. So, creating this blog has been both fun, and challenging.

I have been playing around with different things that I can add to my blog, and to try and customize it. I have been doing everything by reading instructions (which aren't in english, they are in techno language, which I don't speak), and through trial and error. Oh yeah, also with ALOT of prayer!

I am finally getting the hang of a few things. I am really proud of myself. This has been a small win for me. I thought I would never figure out how to add things to my blog.

Now if I could just figure out how to add the blogs I follow to my side bar, I would be really happy. I am always open to suggestions and any help I can get.

Soft Hugs to All
Laurie D.

Tuesday, September 15, 2009

Fibromyalgia and the Recovering Addict.

Yes, you read the title correctly. I am also a recovering addict. I have been clean since 1996. This has made the process of finding relief for the pain of fibromyalgia that much more difficult. As a recovering addict, I need to be extremely careful regarding which medications I take, and be aware that the use of narcotics for pain relief could trigger a relapse. In order to give you an idea of the process that I have been through, I need to go backwards and give you some history.

First and foremost, as a recovering addict it is my responsibility to make sure all of my doctors are aware of my past history. Unfortunately, once I tell a doctor that I am an addict in recovery, the first thing they think is I may be a drug-seeker. I can understand why this is. Many addicts will create a scenario of chronic or acute pain in order to obtain narcotics legally. Therefore, doctors must assume from the start that this could be the case when I come to them complaining of wide-spread deep muscle pain. With this in mind, I made sure I stressed to my doctors that I must try all non-narcotic options first.

Prior to being diagnosed with fibromyalgia in 2008, I was experiencing episodes of wide-spread pain and fatigue that could not be explained. Time and time again I was diagnosed with "Viral Syndrome", in other words they weren't sure what was causing my pain. I was also experiencing severe migraines and fatigue. This was nothing new to me since I have been having migraines since I was 16 years old. Over time, my pain and a feeling of being "sick" continued to get worse and worse. It reached a point where I started experiencing chest pains and was admitted to the hospital for observation and testing. Once again, all of my tests came back negative. I was becoming more and more frustrated and depressed. My family was getting to the point that they were tired of hearing me complain about how I felt. They had brushed me off as a hypochondriac. It wasn't until after my mother saw a commercial about fibromyalgia that she suggested that I mention it to my doctors.

The primary care physician that I had at the time did not believe that fibromyalgia was real. I wasn't going to give up. I needed an answer to what was wrong with me. I was fortunate enough to be working in health care during all of this and the doctors I worked for recommended I see a rheumatologist. I had to find a new primary care physician in order to get a referral to one. I made sure that I was going to have a doctor who would be open-minded to the possibility that I may have fibromyalgia. I started calling different practices and interviewed several doctors over the phone. I finally found a doctor who I felt very comfortable talking to and she had knowledge of fibromyalgia. She gave me a referral to a rheumatologist who did an extensive exam and confirmed a diagnosis of fibromyalgia.

I just need to back track for a minute to explain the process I went through to find medications that would work for me. Over the years of not knowing what was wrong with me, I saw a few different neurologists for treatment of my migraines. In an attempt to find a non-narcotic option to help with the pain of my migraines and also to treat my depression, we tried many forms of drugs, from non-narcotic pain meds, anti-depressants, and anti-seizure medications. Unfortunately, I am very sensitive to medications and I had adverse affects from most of the medications I tried. Finally, I was put on Cymbalta to help with the pain and depression. I was able to tolerate Cymbalta without problems. However, it did not help with the pain.

After I was diagnosed with fibromyalgia, I was referred to a pain management doctor. Since I had already tried many of the medications that he would have used to treat me, we decided that I was going to have to try a narcotic to alleviate the pain. We tried a few medications that didn't offer much relief before we finally settled on Methadone for pain on a regular basis and Roxicodone for break through pain. In order to make sure I don't begin to abuse my medication,  I am monitored very closely. I am given frequent, random urine tests to determine the amount of medication in my system. I also have to be sure I am absolutely honest with myself about the level of pain I am experiencing. I am fortunate enough to have my husband, who is also a recovering addict, to help keep me in check. The biggest problem I am having with taking Methadone, is after a while of taking it, my body builds up a resistance to it and my dosage has to be increased from time to time. I will not be able to stay on Methadone on a very long term basis due to this problem. At some point I will reach a dosage that is the highest amount allowed and we will have to start our search again. I try not to think about this for now, and just focus on today. I am also taking anti-depressants and anti-anxiety medications. I also use vitamins and suppliments that have been recommended for the treatment of fibromyalgia as well as depression and anxiety.

As well as having fibromyalgia, I also have herniated and bulging discs in my cervical and lumbar spine. I have degenerative joint and spinal disease. Among other illnesses, I have Epstein-Barr and Hepatitis-C. I have been treated in the past for Lyme's disease and have had physical and mental trauma over the years. All of these things can lead to and aggravate fibromyalgia, adding to my dilemma.

Unfortunately, many of my friends in the recovery community don't understand the pain that comes with fibromyalgia as well as the other medical problems that I have and they have stopped talking to me. It truly hurts when your friends turn their backs on you for lack of knowledge of this illness. Many people are mis-informed and mis-lead about the nature of fibromyalgia and the pain and fatigue that comes along with it. Many people who have fibromyalgia, including myself, have found themselves feeling abandond and all alone.

I have learned to depend on the handful of friends that I still have, including two close friends who also have fibromyalgia. Most of all, I have come to depend on God for comfort and support. I pray and meditate on a daily basis and go to church when my illness allows. I also have found much of my support and information on the internet. By joining on-line support groups and blogging, I am learning alot about my illness and ways to cope with it. I am extremely greatful for the opportunity to blog for awareness during Invisible Chronic Illness Awareness week.
If you know someone who has fibromyalgia, whether they are a recovering addict, or not. pleasee don't turn a blind eye to their pain. Try to understand, or at least lend an ear for them to talk to and a shoulder for them to cry on. We need as much support as we can find in order to deal with the day to day difficulties that are a part of a fibro-mites life.

If you are a recovering addict who has been diagnosed with fibromyalgia, there are many non-narcotic options that can work for you. Be sure to inform your doctors of your status as an addict and work closely with them to determine the correct treatment for you. If it does come to the point where you need to take a narcotic for the pain, make sure you are closely monitored by your doctor, take your medications only as prescribed, and most of all, be sure you are being honest with yourself regarding the level of pain you are in. You will often find in recovery that many people will want to tell you what you can and cannot do as far as health care and medications are concerned. Remember, none of these people are doctors. Leave your healthcare in the hands of professionals and do what is right for you. Don't let the opinions of other addicts, who are mis-informed about your illness, try to force you into suffering when there are options out there.

For more information, you can go to http://www.invisibleillnessweek.com/ for other blogs about fibromyalgia.
Please be kind to yourself.
Soft Hugs to All
Laurie D.

Monday, September 14, 2009

Patients like me.

I just came across an interesting web-site it's http://www.patientslikeme.com/ .

It offers forums for support. Not only for fibromyalgia, but for a list of illnesses. It offers a tracking feature. You can put your specific information about treatments, goals, doctors visits, diagnoses, and other information and it makes a tracking chart and a bio that you can print out and take to your doctors visits to help support your treatment. It also offers alot of information that could be helpful to those of us with fibromyalgia or someone with other illnesses. I really liked the site.

Soft Hugs to All.
Laurie D.

Retirement/Birthday Party.

Hello all.
Today I feel like an old, worn out rag. It's a nice, warm, sunny day, so I'm not having much pain. A few aches here and there, but nothing worth taking any medications for. I am very tired, dragging my self around to get done the few little things that I have to do. I'm not surprised I feel this way. Actually, I had expected to feel much worse than this today.
You see, yesterday we went to a retirement/birthday party for my brother-in-law. The weather was perfect for barbequeing and the kids and even the adults had a good time playing games outside. When I woke up yesterday morning, I was feeling OK. I was able to get through the day without feeling too bad. The family understands and are very understanding and helpful. That really means alot. What really got me was the long ride home. I started feeling like I was going to be sick about 4:30 or so, I told my husband that we were going to have to get going pretty soon, so we decided on 5 o'clock since that is when his mother and one of his other brothers was leaving. Of course, by the time everyone gets their stuff together, packs up doggie-bags, says their good-byes and actually gets on the road is was closer to 5:30 or so. On a good day, it takes a little over an hour to get to his house. But, on the way home last night the traffic was horrible. We got stuck for a while behind an accident that had things at a crawl, and because of the time we hit the traffic that was going to the Phillies game. Fortunately, we have a Suburban that has plenty of leg room (I am 5'10" with long legs) so that helped, but my neck and back were killing me by the last 1/2 hour of the drive. All in all, it took us a little over 2 hours to get home. I was so greatful to pull into our driveway.
Normally, after a long day like that I usually have severe pain, as well as feeling run down and spend the entire day in bed. Last night, as usual, I had a hard time falling asleep because of the pain in my neck and back. I also kept waking up during the night, which is also normal for me. I am up and down all night, every night. I had to get up this mornng to get the kids up for school and get my youngest ready and on his way. This morning though he had a really bad headache and sore throat and had a slight fever, so we let him stay home and go back to bed. The two of us slept until about 1 o'clock.
Before we left the party, my sister-in-law cut some fresh lavendar from her garden and gave me and my mother-in-law each a bundle. I decided to sit down today and cut the lavendar to make sachet's for our pillows and dresser drawers. It turned out to be a little harder on me than I had expected. I thought, this is the perfect thing for me to do today. All I have to do is sit and break up the leaves into small pieces and put them in old nylons and tie them off. Well, the stripping and breaking up of the leaves proved to be harder on my arms and back Since the scent of lavendar naturally relaxes a person, if you put a sachet of fresh lavendar in your pillow case, it should relax you and help you sleep better. Also putting one in your pajama drawer gets the scent on your sleep-wear and adds to the aroma. At least I got enough finished for each of us to put them in our pillow cases and I can try to get the rest finished tomorrow. It's a small, simple goal, that is not hard to do.
 I have learned to set small goals and be happy when I achieve them, rather than set a large goal and feel depressed when I am unable to follow through with it. If I have a larger project that I know needs to be worked on, I tell myself that I will work on it when I have a day that I am feeling OK, and I will only do as much as my body will allow. If I commit to doing something large, I am usually disappointed when I don't feel up to doing it, and even more frustrated if I can't finish the project. My emotional and mental health depends on me setting realistic goals so I don't disappoint myself.
All in all, we had a good time, with good food and family yesterday (I did eat more than I should have, but that's what family get togethers are for. lol). And, today hasn't been as bad as I had expected, so this is a good day too.
Don't forget to check in at http://www.invisibleillness.com/ for Invisible Chronic Illness Awareness week. It starts today and runs through friday.
Soft hugs to all.

Sunday, September 13, 2009

Are You Blogging for the Cause?

Are You Blogging for the Cause?

This post may sound much like my opening post, but I have created this post to link to the web-site to promote Invisible Chronic Illness Awareness week and the 5 day free virtual conferences with 20 speakers, which runs September 14 - 18, 2009. To learn more, go to http://www.invisibleillness.com/ thank you for your support.

My name is Laurie. I am a 46 year old mother of 4 children and 3 cats. I have Fibromyalgia. One of the most mis-understood illnesses that I am aware of. Many people will even argue that it isn't even real, including some doctors. This can be very frustrating at times. Those of us with an invisible illness such as fibromyalgia often hear people saying things like..."You don't look sick"..."You must have a low pain threshold"..."Why can' you just take some tylenol or ibuprofen and push through it", just to name a few.
When we do come across someone who has heard of fibromyalgia, they try to be understanding, but most people think that fibromyalgia is just chronic muscle pain. It's much more than that. This is the reason I my blog URL is titled "fibromyalgia-morethanapain". It's much more.
Fibromyalgia, like many other illnesses comes in varying degrees. Some people have a mild form that consists mostly of deep muscle pain, and a sense of just not feeling well. These people can usually push through it, and are successful with some of the current treatments. I have found, that this is usually the case early on in the illness. Others, like myself have a more debilitating case of the illness. I have progressively gotten worse over time. I finally had to give up my career and go on disability, which is difficult.

Many, like myself, also suffer from many other symptoms and illnesses that come along with fibro.Of course, deep muscle pain, migrain headaches, insomnia, sleep apnea, restless leg syndrome (RLS), depression, anxiety, nausea, gastroesophageal reflux disease (GERD), irritable bowel syndrome (IBS), constipation (side effect of many pain medications) weight gain (from fibro and a side effect of some medications) hot flashes and profuse sweating alternating with episodes of chills that feel like they go down to the bone, increased sensory perception (a heightened sense of light, sound, and smell which can be very annoying), sensitivity to changes in the weather, gradually losing independence by needing medical aids such as canes, leg braces, shower seats, inability to get in and out of tub by yourself, loss of balance, short term memory loss, decreased cognitive skills, tremors, a sense of "just not feeling well", like you have the flu without the fever. Some people can't even bare to have fabrics touch their skin. The sheets on their beds hurt them and their clothes hurt their skin. I am sure I have left something out, or there are other problems that people suffer from that I am not aware of yet.

As you can see, this illness goes much further than the general public are aware of. Many people have been mis-led by the commercials that the pharmaceutical companies air. They show a generally happy, vibrant looking person, complaining of muscle aches, and then telling us that they were successfully treated with whatever drug they are tryng to push. This makes our cause, trying to raise awareness of this illness, that much harder. Yes, the symptoms of fibromyalgia can be treated in some people, but most still suffer from many of the problems that I have listed above. The best thing any of us can do for ourselves is research. Search the internet, medical journals, and talk thoroughly with a physician that is trained to treat fibromyalgia or whatever invisible illness you or someone you know suffers from. Be your own advocate. It is your body, and you must demand proper medical care, and take a pro-active stance in your own treatment. No one knows exactly how bad you feel as well as you do. We know our own bodies better than anyone else does. If you are recieving treatment, and you feel it is not working, research alternative treatments and discuss your options with a qualified medical professional.

How do I deal with my invisible illness? I maintain HOPE. I research my illness and treatments for it. I print out the information I find and take it to my doctor to review with me. I follow my treatment plan religiously. And, on the days that I feel that I just can't handle one more second of the pain and the sense of just not feeling well, I pray. I pray and ask God what he wants me to do with my invisible disease. Why do I have it and what is my purpose? I believe it is to help others to understand and find hope.

Please, if you are reading this, and you know someone with an invisible illness, do them a favor and research their disease, learn what you can do to help them and make their lives a little easier. Help them by understanding and lending them an ear that will listen, and a heart that will care. It would mean the world to them.
Soft Fibro Hugs to all.
Laurie D.


Saturday, September 12, 2009

Sat. Sept 12.

Hello. I guess this is where I start to track myself and post what is going on and things I've learned. For the most part I will just name each post with the date, unless something particular happened that day.
I didn't get much sleep last night. Yesterday was a gray, chilly, rainy day, and it took a toll on me. I was in excruciating pain most of the day. Even the medication that I take on as "As Needed" basis for break-through pain didn't help. I did very little yesterday other than start this blog. I was up and down all night from the pain.
I did get a few hours last night, and I woke up this morning feeling horrible again. I had some breakfast, and went back to bed for about an hour. I had to get up at 9AM this morning to get my son up (he was going to help his grandparents today). It took a few hours, but eventually I started to feel a little better, and was able to get my kitchen straightened up. There wasn't much to do. (I finally got through to my family that if they rinse their dishes and put them right in the dishwasher, or on the counter "neatly" if the dishwasher is full, it makes it much easier on me.) I was able to go out and run a short errand (10 minutes), which is rare. I seldom drive anywhere by myself anymore. I either go with my husband, or I let my son drive (he has his learners permit and it gives him the experience). So I would say the morning was a success for me.
I did start to get really tired by noon, so I layed on the couch and watched TV, took my 1 o'clock medications and fell asleep on the couch until about 3 PM. When I woke up, I felt horrible again. Today is a gray, dreary, humid day. Not hot, not chilly, but damp. The humidity really gets to me. It makes me feel very sick. I also sweat profusely. I usually carry a dish towel around to wipe my face and neck off. Regardless of how I was feeling at 5 o'clock, I had to push through it. My father was going to take me to the market, and this is the only time he had available to take me. Thank God that I am now home. The only thing I have to do  now is take a bath (which doesn't take as much out of me as a shower does) and shave my legs (which is difficult to do, the bending and twisting is not easy to do, I am not as flexible as I used to be). Then, all I have to do is relax..... All in all, I would say this was a successful day.
Just to give you an idea of my daily schedule, I've listed my normal routine and medications below.
I get up at 5AM every day. I take my medications religiously. I have to take certain medications at different times of the day and so many hours apart. I have to take Protonix on an empty stomach, at least 1/2 hour before eating, so I take it then. I also take Wellbutrin, and Methadone (for pain) at that time.This also works out well since I have to wake my 17 year old son up at that time for school during the week. I usually go back to bed until 6:30 when I have to get my 11 year old up for school. At that time I eat breakfast with him and take vitamin suppliments. I take a multi-vitamin, Omega 3 fish oil, folic acid, magnesium, B complex and Vitamin D. I have to take the fish oil and the magnesium 3 times a day. I take my next dose of methadone and suppliments at 1 PM, and then at 9 PM I take methadone, Cymbalta (I am tapering off of it), suppliments, and Sinequan (for sleep). The two "as needed" medications I take are Roxycodone (for pain) and Xanax (for anxiety and panic attacks). It's almost a full time job to remember everything I take, and what time I take them. I have a medication case that has the days of the week, and 4 boxes for each day. I seperate my medications and load the box every Saturday night. It makes it much easier. I just have to open the case and take what is in there at the prescribed time.
As I continue to blog, I will not bore you with all the details of what time I took what meds and every little detail of my day. I will just note the weather, how I feel and anything that I had to do that takes energy for me. I will also at times fill you in on some past history, so you can get an idea of what I've been through, and for how long. Also, I will let you know of any information I learn or any web-sites that you might be interested in.
For example, I have a Facebook account, and I love to go on the National Fibromyalgia Associations group site on Facebook. It's a great place to vent, and to find support from others with Fibro who understand what the other is going through. I have also learned alot about suppliments and alternative treatments by reading posts from other people. Of course, after I read about something, I go and research it and then talk to my doctor before implimenting anything into my routine.
Well, I've blabbed enough for now. Very soft hugs to all my Fibro and normal friends.

Friday, September 11, 2009

Forgot to mention - Liability Waiver

I should have posted this to begin with, but I didn't think of it until later.

I want to make it perfectly clear that this blog is not intended to replace or mimick the advice of a lisenced physician. I am not a doctor, physician assistant, nurse, therapist or any other lisenced practitioner.

This blog is not intended to solicit any products or to promote or disuade anyone from using any certain products, drugs, suppliments, etc. of any kind.

Any comments on this blog mentioning any medications, suppliments, or other products used for Fibromyalgia are not meant to replace the advice of your doctor and are not necessarily the same as my opinion on my blog.

I would like to ask any distributors to please NOT mention any specific product that they may be trying to sell on this blog. This blog is not meant to solicit sales for anyone's product.

Any advice or suggestions you see here on this blog, please discuss with your doctor before trying to impliment them into your treatment plan. What works for me, may not work for others and  vice-versa.

If you have a product that you would like to advertise please do so legally and properly, and please do not use the comments for your own advertising purposes.

Remember, I am just a person who has been diagnosed with Fibromyalgia as well as other medical conditions who is trying to promote awareness of the disease, offer a place for support for others with Fibromyalgia, and to track my own progress and/or regression.

Thank you for your understanding.

Life with Fibromyalgia.

As my description says, I have decided to start this blog to raise awareness about Fibromyalgia (FM). What is a Fibromite? It is a slang term for someone with Fibromyalgia. I am a Fibromite. I have a very severe case of FM that has left me disabled. Many people have been led to believe that Fibromyalgia does not exist and it's "all in our heads". Others have been mis-lead, by commercials for drugs that are used to treat Fibro, into thinking that Fibro is just a matter of muscle pain that is easily treatable. For some people this is the case, but for most Fibro is much more than that.
Fibromyalgia causes severe deep muscle pain and painful "trigger points" throughout the body. This pain can at times be excruciating and nothing can be done to aleviate it. Many days, I feel like someone is trying to "snap" my bones in half. I ache all over, all the time. Even though I take regular prescribed doses of pain medication to treat the constant pain, and another pain medication for more severe "break through" pain, I always have some level of pain to deal with.
As well as pain, Fibromyalgia gives me a sense of "just not feeling well", like I feel when I have the flu, only I have no outside signs of being sick. I don't have a fever, but I have the chills and cold sweats that I feel when I do have one. I feel nauseas most of the time, but rarely vomit. I have dizzy spells, feel weak in the knees, and sometimes I get this sense of a mild "electric shock" feeling that runs through my head and I can hear it in my ears.
Constantly feeling sick and being in severe pain is very frustrating and cause alot of stress, anxiety, and depression. Fibromyalgia also causes Irritable Bowel Syndrome (IBS) and GastroEsophageal Reflux Disease (GERD). It is also related to Sleep Apnea and Restless Leg Syndrome (RLS), I have both. I have a C-PAP machine for the sleep Apnea, but it is very uncomfortable, and I cannot get used to wearing it. Many people, including myself, have weight gain from FM. Also, I've gained weight as a side effect of two of the medications I have been on to treat my pain and depression. However, doctors highly suggest maintaining a low, healthy weight to help with FM. It's a bit difficult to lose weight when you are taking medications that induce weight gain.
Fibromyalgia is usually triggered by some other underlying problems. Such as viral diseases or trauma. I have Epstein-Barr, I've been treated for Lyme's disease, and I have the Hepatitis-C anti-body. (Thank God I don't have the virus). I also have Herniated discs in my cervical and lumbar spine, bulging discs in my lumbar spine, Degenerative spinal disease, degenerative joint disease and arthritis. All of which also cause chronic pain. I have neoprene knee braces for both knees, and walk with a cane. I have to use a shower seat to take a shower along with my husbands help to wash my hair and back. If I take a bath instead of a shower, he has to help me in and out of the tub.
Fibromyalgia is a silent disease. If you look at me, other than my weight and using a cane, you would never know I was sick. This is the case for everyone with FM. Some days can be worse than others, some days you feel fine, almost as if there is nothing wrong with you other than a few aches. Usually the weather affects how you feel. Chilly, damp, rainy days are the worse. Today is one of those days. I have been in excruciating pain for most of the day. I took my pain meds and have found a bit of relief. Just enough to get this started. Sometimes, the pain varies from hour to hour and not just day to day. I never know how I am going to feel when I wake up. This makes it difficult for me to make any definite plans with anyone, to do anything. Many people see me as unreliable, because they don't understand this disease. Unless you, or someone you know has Fibromyalgia, it is difficult to understand. That is why I have been doing research on the internet and talking to other "Fibromites" to learn more about what I am dealing with. This is also why I decided to start this blog.
I have a very strong faith in God. After praying about why I have this, and what I am supposed to do with it, it came to me to start a blog to help raise awareness of this disease.
I will try to post everyday if I can. If not, at least a few times a week. I will post how I am feeling, what the weather is like, what I am eating, what medications I am taking, what happens when I go to my doctors appointments,  and any information I come across on the internet or when talking to others with Fibro.
If you have found my blog, and you have Fibromyalgia, please comment on how you feel, and what works or doesn't work for you.
Soft hugs to all my current and future fibro friends.