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.

HOW I DIFFER FROM YOU - AWARENESS

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



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

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.

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.

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.
Laurie