I created this blog to record my experiences with Fibromyalgia. To share information with you and I hope you will share your experiences and information with me and other followers.
Sunday, October 24, 2010
Change in the Weather
Winter can be cold and rainy, with freezing temperatures and a chance of snow and ice.
Spring brings beautiful flowers and color is everywhere.
Summer's warm sun shines a bright light on all the earth.
Fall brings color to the leaves and a warm east wind.
Those with Fibromyalgia can have additional pain during different seasons. For me, it is summer. My body protests the heat and I have increased pain. For others it is winter with the chilling cold.
I have increased symptoms with a cold wind which is an issue during three of the seasons. A cold wind makes my arms, back and thighs cold to the bone. This type of cold does not go away until I'm under a warm blanket. A friend gave me a heated lap blanket. I hope it never wears out! ;D
Friday, October 22, 2010
Today is the Day!
Will you advocate for yourself? Choose to be proactive.
Will you locate a physician who will work with you to find the right medication and who will give you good medical advice?
Will you decide to loose weight or continue on a path to obesity?
I hope you choose to be proactive and advocate for yourself. Find a physician with whom you are comfortable and can openly discuss your medical needs. The first question should be whether they believe in Fibromyalgia and if they treat Fibromyalgia patients. You want them for the long haul, so interview like you would if you could chose your child's teacher. Your daily existence depends on how your physician treats you. If they do not fight for your health, what do you have? The answer, we know to well...high level pain, migraines, IBS, etc. We deserve to feel the best that we can while living with Fibromyalgia or any other chronic disease. Because you will interact often with the physician's staff....how do they interact with you? Be strong, advocate for yourself and be proactive!!
The song, "I am Woman Hear Me Roar" comes to mind. :D
Because it is difficult for many of us to do aerobic exercise, obesity is becoming a problem. Obesity is a medical condition by itself. I've come to the conclusion that I need an exercise buddy. Someone to stretch with me and to go on a walk daily. Because we travel, my buddy is usually my husband. For some reason when I want to walk, he doesn't. It's difficult to mesh our schedules.
I hope we all can make a committment to helping our bodies to heal.
Saturday, October 16, 2010
I AM Fibromyalgia
I do not allow sleep. You may sleep for an hour, but then are awake the remainder of the night. Your body is exhausted. Your muscles, etc have no time to regenerate energy = pain. The body can become so tired that it becomes nauseated. Fatigue will drag you down. Even if you take medication to give you a full night's sleep.
Substance P causes different pain sensations. Cramping, burning, stabbing, dull, sunburn, just to name a few. Some have pain over their entire body. Others in different parts of their body. The pain can move from one location to another.
I also cause a decrease in Serotonin. Serotonin helps mask the sensation of pain. So, an increase in the sensation of pain and a decrease in masking the pain .... I've got it covered!!
You can have trouble with IBS, causing you to have as many as a dozen bowel movements a day. Others become constipated.
I am good at playing havoc with eye sight. Poor guys get an eye exam and new glasses. Soon after, I change their vision. I change it often so new glasses don't help. There are times I cause eyes to burn or to be dry. You can see spots before your eyes. For Debbie, they are not spots but thin, odd shaped floaters. They disappear and reappear when exhaustion sets in. When you go to the grocery store, the different colors on the grocery shelves can run together making it difficult to focus. Heaven forbid that a lady should pass you in the isle wearing strong perfume. These situations can cause a dandy headache or migraine.Balance is not as good after I move in. As you become exhausted, it is hard to pick up your feet. They can drag and cause tripping. If your sight is wacko, that also plays into your balance.
Tension headaches are with you constantly, getting worse with fatigue.
Migraines are a specialty. For example, they come on when you reach your physical limit, are stressed or eat something that would trigger a migraine.
How about Plantar Fasciitis? Pain in the bottom of your feet. It is worse in the morning, but bothers you all day.Loud sounds, bright lights. Boy is that fun. Sounds can be louder and light is brighter the more tired you become. Even though the lights are not bright for the average person or the room noise is not loud, it is to the Fibro sufferer. They are magnified.
You will also be frustrated with weather issues. Some feel better in the heat while others have increased pain. Then there are some who feel better in the cooler weather of winter, leaving others with increased pain.
For some folks, specific foods cause increased pain. Examples include seafood, wine and sugar, to name a few.
When you are fatigued, the muscles in your throat will restrict and not allow food to be swallowed. You need water to help get the food down.
Watch out for chest pain. This pain is not a heart attack. The nerves along with the muscles, tendons, and ligaments can become hypersensitive which results in Fibromyalgia pain.
As Fibromyalgia, I cause cognitive problems. You will replace words with other words while you are talking, typing or writing. Sometimes you know when this happens, sometimes you don't. During a conversation, Debbie's mind goes blank and can't say the correct word. She knows what the word is, can see a visual picture of the word and can see the word written, but she can't verbalize the word out loud.Memory, what memory? I wipe out bits and pieces of your memory...such fun! You either can't remember what you WERE talking about, what you were GOING to talk about, or an accurate VIEW of a story. This will cause anxiety because of the frustration, so you tense = pain.
You won't be able to concentrate. It's almost like you have Attention Deficit. Focusing is a challenge. A combination of cognitive, memory issues and focusing is called Fibrofog.
I mess with your emotions and cause depression. Some are so depressed they take their own life. I hate to cause that extreme emotion, but it does happen. Anxiety messes with the fright or flight emotion. This will cause your body to tense and not know what to do. That's a fun accomplishment for me.
Restless Leg Syndrome is when the muscles contract causing limbs to jerk. I'm not sure why they refer to it as a "leg syndrome" because the arms are involved too. I don't leave out any part of the body. I even cause the creepy crawlies. This is when it feels like you have a bug crawling on you. You scratch even though there is nothing there.
When Debbie's body becomes exhausted, she sweats. When she sits down, sweating subsides. She has over taxed her body. The body can only do so much while on your feet. Again, frustration = pain.
Goose bumps happen even on a warm day. I create them at the least on the arms and thighs. I make that area of the body feel very cold. Debbie's husband, Dwain, calls this a "cold snap."
Itchy spots can appear in the palm of your hand or other areas. Usually in what can be called "hot spots." Sometimes they show up because of a change in medication.
Tingling and numbness to any of your body parts, but the limbs are my first choice.
You can loose some of your hair. Commonly this will happen soon after I come to live with you on a daily basis. It just thins so not a big deal, at least for me.
Would you like to raise your blood pressure? I can arrange it. Whether it is because of stress or your medication.
I don't want to leave out your mouth. Cold and canker sores in or outside of the mouth are common. I also arrange for you to have excess phlegm in your throat.
IBS
When I was working, I would go on average 12 times a day. I saw the doctor and she prescribed medication to help with the cramping. The medication cut the amount of times I'd go to half, but still miserable. I got the heads up about Slippery Elm from my local health store owner. It was hard for me to talk to a man about my bathroom habits. But so glad I did as he put me on the right track. In the beginning, I drank a warm cup of Slippery Elm three times a day. I am now able to have it as needed. Hope tomorrow is a better day.
Thursday, October 14, 2010
I've had good visits with friends this week. To see my family and friends is what draws me to the Oregon Coast. Of course the Pacific Ocean is no slouch. Lucy and I walked on the beach today. I picked up a grocery bag of garbage. I walked to far. I was exhausted by the time we returned home. I had lunch and took an hour nap. When I woke, I felt like crap. The Fibromyalgia pain in my legs was miserable. I spent most of the afternoon in my chair.
I fixed dinner and it tasted like terrible. I hate it when I spend time on a meal and it doesn't taste good. I've never been a good cook. I told Dwain I will never make spaghetti again. He will need to make it. To stand on my feet when my legs and hips hurt more than usual and think I'm making a nice meal, then to fail is not acceptable to me. I don't like spaghetti but I still try to make a good sauce because I know Dwain loves it. I don't know what I'm doing wrong.
My heart is breaking for one of my blogging friends. Her Mom is in the hospital and not expected to live much longer. Reading her posts reminds me of when my parents passed. It was a tough time. I expected to enjoy blogging and to be on Facebook, I expected to enjoy getting to know others and to share mutual issues. Since beginning to blog and post on Facebook, I have lost one to suicide and now going through another's Mom's death. In each case they live in another state. It feels like I can't help enough because they are to far away. I can only be verbally supportive and when their Mom is dying, it doesn't feel like enough to me.
Friday, October 8, 2010
We've Moved!
I stayed with Heather. We shopped 'til we dropped for two days. Nice to have one on one with her with no interruptions. My Fibromyalgia was on high alert, but I paced myself as best as I could. I knew I would pay for it later.
Dwain and I left Wallowa Monday morning and traveled to LaCentler, Washington. I napped on the way down. We spent two days with Adam, Carrie and Lyla. Lyla will be two on Monday, October 11. She is so loved and ahead of those her age. What a treasure. Adam and Lyla will be spending part of Monday with us. We will celebrate her birthday.
I jammed my left pinky finger on Thursday. The swelling is going down slowly. It throbs. I hold it up over my heart and feels better. While typing, I use my little finger for an "a".....ouch! The visual bruising is almost gone.
We are now parked at Manhattan Beach Wayside State Park. The wayside is located north of Rockaway on Highway 101. The last hosts left the park in good shape. We can hear the ocean from our parking spot. It's a short walk to the beach. The high school that we graduated from is across the street. Dwain used to run on this area of the beach training for track season. We had Chinese dinner with Dwain's Dad and Step Mom the evening we arrived.
Okay, I'm now paying for the increased activity before we left Wallowa Lake, the time with Heather and family then Adam and family. The good part is that with this volunteer job, I can take occasional breaks.