30 Things About My Invisible Illness You May Not Know

Invisible Illness Week September 12th-18th. We all know that awareness is so important, and part of events for that week is the 30 things that affect us living with illness, and perhaps will help to gain a wee bit of understanding. 1. The illness I live with is: Fibromyalgia, Degenerative Bone Disease, Depression, Gulf War Symptom. 2. I was diagnosed with it in the year: 2011, 1999 3. But I had symptoms since: My entire life. 4. The biggest adjustment I’ve had to make is: Losing the ability to just GO when I want. 5. Most people assume: That I need to press harder and pray more and it will be better 6. The hardest part about mornings are: Getting up when I just went to sleep 7. My favorite medical TV show is: Dr. Oz 8. A gadget I couldn’t live without is: My cell phone and laptop 9. The hardest part about nights are: They end too soon, I stay up most of the night. 10. Each day I take 3 pills for blood pressure when I can remember, have dozens more for other symptoms. I hate taking pills 11. Regarding alternative treatments: I Prefer them to meds if I can. 12. If I had to choose between an invisible illness or visible I would choose: Cancer, at least they treat you for it without accusing you of being crazy. 13. Regarding working and career: I am currently unable to work like I use to. Crushing and devasting to my bank account. 14. People would be surprised to know: The amount of times that I CRY~ 15. The hardest thing to accept about my new reality has been: The constant thought of being homeless, again. 16. Something I never thought I could do with my illness that I did was: Move 17. The commercials about my illness: What commercial? 18. Something I really miss doing since I was diagnosed is: Travelling 19. It was really hard to have to give up: My control over my body. 20. A new hobby I have taken up since my diagnosis is: Jewelry making, blogging, researching 21. If I could have one day of feeling normal again I would: Return to church to teach/preach 22. My illness has taught me: God is always with me 23. Want to know a secret? One thing people say that gets under my skin is: Don't you remember. 24. But I love it when people: Call for no particular reason. 25. My favorite motto, scripture, quote that gets me through tough times is: God is a present help in the times of trouble and Psalms 23, HE restores my soul~ 26. When someone is diagnosed I’d like to tell them: If your doctor is not for you, or don't believe you, you will know in 5 minutes, get a new doctor. 27. Something that has surprised me about living with an illness is: The fight is relentless and so am I. 28. The nicest thing someone did for me when I wasn’t feeling well was: All expense paid trip to the beach in Gulf Port, MS, overlooking the ocean~ 29. I’m involved with Invisible Illness Week because: Awareness is important so we can get the research we desperately need. 30. The fact that you read this list makes me feel: Loved, cared for, supported. GO RHIARMY! Thank you - if you made it this far, thank you so so much. Subscribe, follow, share. It helps make the extra tough days a little easier with a bit of hope in the darkness.

Know the Signs of a Heart Attack and Strokes

Warning Signs of Heart Attack

Some heart attacks are sudden and intense, but most start slowly with mild pain or discomfort with one or more of these symptoms:

• Chest discomfort. Most heart attacks involve discomfort in the center of the chest that lasts more than a few minutes, or that goes away and comes back. It can feel like uncomfortable pressure, squeezing, fullness or pain.

•Discomfort in other areas of the upper body. Symptoms can include pain or discomfort in one or both arms, the back, neck, jaw or stomach.

•Shortness of breath. May occur with or without chest discomfort.

•Other signs. These may include breaking out in a cold sweat, nausea or lightheadedness.


Warning Signs of a Stroke/CVA

The key to recognizing signs of a stroke is that they are SUDDEN:

•Sudden numbness or weakness of the face, arm or leg, especially on one side of the body

•Sudden confusion, trouble speaking or understanding

•Sudden trouble seeing in one or both eyes

•Sudden trouble walking, dizziness, loss of balance or coordination

•Sudden severe headache with no known cause

If you or someone you know experiences any of the heart attack or stroke warning signs, call 9-1-1 immediately. Check the time so you’ll know when the first symptoms started. It’s very important to take action immediately. Getting to the hospital in time may help reduce the devastating effects of these medical emergencies.

Where to Get More Information about Heart Disease and Stroke

•Talk to your doctor or healthcare professional. If you have heart disease or have had a stroke, members of your family may also be at risk. It’s important for them to make changes now to lower their risk.

•Call 800-AHA-USA1 (800-242-8721) or browse americanheart.org to learn more about heart disease.

•Call 888-4-STROKE (800-478-7653) or visit strokeassociation.org to learn more about stroke.

Fleeting and Fastly Fading Friendships

I have been having "Pains" for as far back as I can remember, and I do know that upon every visit to the doctor, my pain level was 8-10. But over time and of being overlooked and dropped through the cracks when the Home Invader moved in and slammed me, I soon found out QUICK who was my real friends, and I learned the painful truth about Fleeting, and Fastly Fading Friends. When the pain became so overbearing to the point, I was going days without sleep, because whenever I would lay down, night or day, the pain would tap me in the back and remind me that it was still there, still active, and still awake.

Not really knowing what was going on with me, (go figure) and even got to the point, I felt like I was losing my mind, I couldn't remember things, the PAIN was/had taken over. When I finally mustered up enough strength to try to find out what was going on, all roads were leading to the Diagnosis of Fibromyalgia. I slowly began to tell friends, and as I told them, they slowly started to flee and fade away fastly.

Overtime, some of my friends, who I thought were really good close friends just quit calling, quit replying to my texts, my emails, my phone calls, well reluctantly, I quit too. It had become too much for me to keep up, because by now, it is like the water dams have broken and not only am I dealing with pain, I am dealing with a entourage of symptoms that has literally consumed me and exaperated all my STRENGTH.

There is a friend who has not faltered nor failed me. He has been there to wipe away the tears I cry at night, He is there to speak LIFE, HOPE and HEALING into my heart, my mind, my body, my spirit. He is always there. At first, for a brief moment, I took for granted that I didn't deserve His presence, His mercy, His grace, because surely, I did something to bring this on, and my Friend reminded me that His grace is sufficient and that His strength is made perfect in my weakness. So these days, when I have no one to rely on, no one to talk to... no one that "really" understands who I am and what I am dealing with, this ONE FRIEND, yet remains faithful and unfailing. I AM so grateful to have a friend like the Lord, a Friend who will never leave you, never forsake you, a friend who will be with me always, even to the very end.

I just believe that even in the confusion of all this pain, that on the last day of this life of mine, HE will be there holding me, and welcoming me into His eternal home, I see we embracing each other as friends, yet in love with each other, with a story in my eyes that simply said, "I kept the faith, I fought a good fight, had it hard, had to walk this road many times alone, clouded from my tears, but I kept the faith. Family turned on me, friends walked away without an understanding, but Jesus, Lord Jesus I kept the faith, then for one quick moment, I close my eyes just to reopen them in the New Jerusalem.
Jesus is a friend who has never, will never fail.

WedMD health assessment on my Fibro

You report that you have already had a doctor diagnose you with fibromyalgia and that you are taking prescription medication for the condition. If your pain has been reduced or eliminated, you should continue with the treatment recommended by your doctor. But if your pain is not well-controlled, your doctor may keep adjusting your treatment regimen to find a combination of medication and nonmedication therapies that work for you. Responses to treatment vary by person, and finding the right mix that eliminates or reduces your pain may take a few months. MEDICATIONS A wide variety of prescription medications are used to treat the symptoms of fibromyalgia. Although all of the prescription medications mentioned below have been studied in people with fibromyalgia, only three medications have been approved by the U.S. Food and Drug Administration (FDA) specifically for use in those who have fibromyalgia: Cymbalta (duloxetine), Lyrica (pregabalin), and Savella (milnacipran). *Analgesics. Although pain is a key symptom of fibromyalgia, certain types of analgesics, or pain relievers, have not been found effective, including some opioids, such as OxyContin (oxycodone) or Percocet (acetaminophen and oxycodone). The mild opioid Ultram (tramadol), with or without acetaminophen, has been shown to be effective for those with fibromyalgia. However, due to side effects and dependency issues, opioids should be used only when other medications and therapies have proven ineffective. Over-the-counter medications, such as acetaminophen and NSAIDs, may also benefit those with fibromyalgia. However, NSAIDs have been shown to be ineffective when used alone for fibromyalgia pain, which may be because fibromyalgia pain is not related to inflammation. * Antidepressants. Many people with fibromyalgia also suffer from depression. The relationship between the two is unclear. Depression may be due to fibromyalgia symptoms, such as chronic pain and fatigue. It may also be related to imbalances of the brain chemicals serotonin and norepinephrine, which are seen in both conditions. For many, taking an antidepressant often helps decrease the sense of pain. While Cymbalta (duloxetine) is the only antidepressant FDA-approved to treat fibromyalgia, others prescribed for people with chronic pain or depressed mood associated with fibromyalgia include Elavil (amitriptyline), Paxil (paroxetine), and Prozac (fluoxetine). While not an antidepressant, Savella (milnacipran) is approved for fibromyalgia and works much like an antidepressant by altering chemical imbalances in the brain. * Antiseizure Medications. Recent fibromyalgia research has found that altered function of the central nervous system (brain and spinal cord) may play a role in fibromyalgia symptoms. Antiseizure medications that act on the central nervous system have been proven to sustain pain reduction and improve sleep quality in people with fibromyalgia. Lyrica (pregabalin) is the only antiseizure medication approved for fibromyalgia, although Neurontin (gabapentin) is also used. * Muscle Relaxants. These medications help relieve painful muscle spasms. Muscle relaxants commonly used in people with fibromyalgia include Cycloflex (cyclobenzaprine), Flexeril (cyclobenzaprine), Norflex (orphenadrine citrate), and Soma (carisoprodol), and Zanaflex (tizanidine). * Sleep Medications. When pain prevents you from getting an uninterrupted night's sleep, your body will feel the effects, which may include memory loss, difficulty concentrating, a weakened immune system, weight gain, irritability, and an increased sense of pain. If you are waking unrefreshed due to poor sleep caused by fibromyalgia symptoms, your doctor may recommend over-the-counter or prescription medications to help with sleep such as Ambien (zolpidem), Lunesta (eszopiclone), or Sonata (zaleplon).Medications are just part of the treatment plan for people with fibromyalgia, however. Studies have also shown that exercise, patient education programs, and cognitive behavioral therapy can treat fibromyalgia. COGNITIVE BEHAVIORAL THERAPY (CBT) Studies show that CBT, which adjusts maladaptive patterns of thinking, can be as beneficial for treatment of pain and depressed mood. Working with a therapist, you can learn how to overcome negative thoughts and to learn to focus on activities and thoughts that bring you pleasure instead. PATIENT EDUCATION CLASSES There is strong evidence showing that such classes, especially when combined with CBT and exercise, greatly help reduce some of the symptoms of fibromyalgia for three months to one year. In a patient education class, lectures, written materials, and demonstrations are used to teach people with fibromyalgia how to reduce their symptoms and maintain control of their condition.

WELL-BEING

Sounds like you are having a tough time. Your responses to several questions indicate that fibromyalgia significantly affects your life and health. That's understandable, but it's time for you to start feeling better more often by considering whether you are doing everything you can to help manage your fibromyalgia. Focusing on living a healthy lifestyle certainly can make a big difference in how you feel. EAT RIGHT AND LIGHT Everybody, regardless of health condition, should strive to eat a balanced diet in the right portion sizes. Optimal nutrition contributes to optimal health. The body simply works best when it gets the nutrients it needs through a wide variety of foods taken in moderation. EXERCISE A LITTLE EVERY DAY Aerobic exercise and muscle strengthening have been found to improve the ability to function, boost mood, and decrease fatigue. If you are experiencing any of these symptoms, you should consider beginning an exercise program. However, do not start any exercise program until you have gotten your doctor's approval. You may experience mild-to-moderate muscle pain at first as the body adjusts, but the long-term benefits of sticking with exercise far outweigh any short-term discomfort you may experience. Some exercise may be less painful than others, such as walking or doing aerobics in a heated pool, although doctors suggest experimenting to find a program that you feel most comfortable doing. Eventually, you can gradually increase how often and how intense you exercise, so your body can benefit even more. KEEP STRESS IN CHECK The standard pace of life these days seems fast and furious, so slowing down to relax may feel like a waste of time. But it's not. In fact, finding time every day to slow down and take it easy is an extremely valuable part of a healthy lifestyle. Reducing stress reduces the intensity of pain. Simply sitting comfortably in a quiet room and breathing deeply can help. If you have trouble simply letting stress go, therapists can help you learn simple mind-over-matter techniques, such as guided imagery to visualize a calm place, progressive muscle relaxation to eliminate tension in the body, meditation, biofeedback, and even hypnosis. BE A SOCIAL ANIMAL It's true: People do need people. If you have a strong, supportive social network, tapping into it to visit friends or asking for help when you need it may help with some of your symptoms. Being connected to others has been shown to reduce pain and anxiety. One-on-one counseling, group counseling, and support groups also provide a place to vent about your frustrations, while receiving encouragement and coping techniques from others who may share similar symptoms.

If you are doing everything you are supposed to be doing and still suffering, then you should set up an appointment with your doctor to have your treatment plan re-evaluated. Perhaps it is time for a change in medication or medication dosage.

KNOWLEDGE

How much do you really know about fibromyalgia? See how your answers stacked up. You answered 5 of 5 questions correctly or 100 percent.


There are no blood tests that help to diagnose fibromyalgia. [TRUE] Fibromyalgia is a condition that affects mainly women, mostly between the age of 20 and 50. It is characterized by widespread pain and aching in the body, as well as fatigue, sleep problems, and morning stiffness. Blood tests cannot pinpoint the source of the pain or measure fatigue. Instead, doctors examine 18 specific tender points on the body. If a patient reports widespread pain (that is, in both the top and bottom of the body and on both the left and right sides) and experiences pain in 11 or more of the 18 tender points during a physical examination, a doctor may diagnose fibromyalgia. If a patient had previously been diagnosed with another significant condition, such as a rheumatic disorder like rheumatoid arthritis, and yet experiences widespread pain and pain in tender points, a patient may also have fibromyalgia.

Fibromyalgia does not shorten life span. [TRUE] Fibromyalgia doesn't directly decrease the quantity of years lived, but it can greatly impact the quality of them. Pain and severe fatigue can make keeping up with responsibilities at work and at home quite difficult, leading some people with the condition to file for disability. Fibromyalgia can make physical movements painful, so many people with the syndrome tend to limit exercise; some even develop a fear of physical movement. Ultimately, avoiding movement reduces fitness level and leads to a sedentary state, which can increase the risk for other health problems, such as obesity, heart disease, diabetes, or stroke. Although there is no cure for fibromyalgia, proper treatment can help improve the quality of life and help prevent further health problems that could shorten life span.

All doctors know how to diagnose and treat fibromyalgia. [FALSE] Diagnosing fibromyalgia can be tricky, and not all doctors are experienced in doing so. For many people with fibromyalgia, the doctor initially may suspect that symptoms, such as widespread pain, fatigue, waking unrefreshed, and headaches, are caused by another condition with overlapping symptoms. If you have been diagnosed with a condition that has the same or similar symptoms and your symptoms are not improving with treatment, talk to your doctor about the possibility of a fibromyalgia diagnosis.

People with fibromyalgia feel pain when they start to exercise, but they should continue to exercise anyway. [TRUE] Scientific studies show that when people living with fibromyalgia participate in a daily exercise routine, they have less pain and experience improved function. Talk to your doctor about your exercise regimen. Depending on your health and physical condition, some exercises may not be recommended. When beginning an exercise program, you may experience mild-to-moderate muscle pain as the body adjusts, but the long-term benefits exceed the short-term pain experienced. The key is to overcome exercise-related pain, along with any fear of pain exercise might cause, by preparing the body for exercise and finding an exercise program that you feel comfortable doing. And some exercises may be less painful than others, such as walking or doing aerobics in a heated pool instead of walking or doing aerobics on land. You should speak with your doctor for help finding the right exercise routine for you.

Strong narcotics, such as Lortab (hydrocodone) or Percocet (oxycodone) are recommended for the pain of fibromyalgia. [FALSE] Narcotic opioid pain relievers, such as Lortab (acetaminophen and hydrocodone), OxyContin (oxycodone), or Percocet (acetaminophen and oxycodone), are not recommended for treating fibromyalgia pain simply because they don't work for many people who have the condition. A study from the University of Michigan helps explain why. Researchers there found that the opioid receptors in the brains of people with fibromyalgia have a decreased ability to bind and therefore less of a chance for medications targeting those receptors to ease fibromyalgia pain. The study also found that people with fibromyalgia and depression had the least available opioid receptors, making pain relief even more challenging. Because researchers have learned more about how fibromyalgia affects the central nervous system (brain and spinal cord), they have found that anticonvulsants (antiseizure medications) are helpful. These medications include Lyrica (pregabalin), which has been FDA-approved for fibromyalgia, and Neurontin (gabapentin). Both work directly on the brain and spinal cord to reduce the production of pain signals. These medications not only ease pain but also decrease fatigue and help patients get more refreshing sleep, which also helps improve symptoms.


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The Quilt

As I faced my Maker at the last Judgment, I knelt before the Lord along with the other souls. Before each of us laid our lives, like the squares of a quilt, in many piles.

An Angel sat before each of us sewing our quilt squares together into a tapestry that was our life.

But as my Angel took each piece of cloth off the pile, I noticed how ragged and empty each of my squares were. They were filled with giant holes! Each square was labeled with a part of my life that had been difficult, the challenges and temptations I was faced with in everyday life. I saw hardships that I had endured, (which were the largest holes of all).

I glanced around me. Nobody else had such squares. Others had a tiny hole here and there, other tapestries were filled with rich color and the bright hues of worldly fortune.

I gazed upon my own life and was disheartened. My Angel was sewing the ragged pieces of cloth together, threadbare and empty, like binding air. Finally the time came when each life was to be displayed, held up to the light and the scrutiny of truth. The others rose each in turn, holding up their tapestries. So filled their lives had been.

My Angel looked upon me, and nodded for me to rise. My gaze dropped to the ground in shame. I hadn't had all the earthly fortunes. I had love in my life, and laughter. But there had also been trials of illness, death, and false accusations that took from me my world as I knew it. I had to start over many times. I often struggled with the temptation to quit, only to somehow muster the strength to pick up and begin again. I had spent many nights on my knees in prayer, asking for help and guidance in my life. I had often been held up to ridicule, which I endured painfully; each time offering it up to the Father, in hopes that I would not melt within my skin beneath the judgmental gaze of those who unfairly judged me. And now, I had to face the truth. My life was what it was, and I had to accept it for what it had been.

I rose and slowly lifted the combined squares of my life to the light. An awe-filled gasp filled the air. I gazed around at the others who stared at me with eyes wide. Then, I looked upon the tapestry before me. Light flooded through the many holes, creating an image.

The face of Christ.

Then our Lord stood before me, with warmth and love in His eyes. He said,

"Every time you gave over your life to Me, it became My life, My hardships, and My struggles. Each point of light in your life is when you stepped aside and let Me shine through, until there was more of Me than there was of you.

Welcome Home My Child"

Author "Unknown"

Feeling raped

Today, I had to visit the doctor recommended by the Social Security. I am not sure how one 15 minute break would give him the qualification to determine my eligibility of disability, but I left his office, feeling as I had been raped. No he did not touch me, just the 'feeling' of helplessness. Called my own Social Worker, because I am having such a hard time getting through to the X ray department for the Xray of my heart and carotid arteries, only to find out the PCP I thought I got rid of back a few months ago, she is still my PCP, just been letting her interns see me, after speaking with the nurse in the Pain Clinic was told that she "the quack doc" was notified back in May, so here I sit in all this pain all this time, called also to patient affairs to find out why she is still my PCP and NO response from them. I am really trying NOT to go to the hospital to handle this............................. Another Fibro day from hell, migraine, stress, back aching, foot rash and needing to be removed!!!, Neck and shoulders in spazms, it can't get no worse, or can it.

Another Flare Day

Today is Sunday, July 3, 2011 and as I lay awake early this morning, ready to get up but scared to move because even now, with having done nothing to invoke pain or fatigue I am already feeling it, and my feet have not yet hit the floor. For some strange reason, we know when it's gonna be another day, like that day. Called the Flare Day.

Frustrated, I don't just GET up because I am already stiff and sore and tired. I went to bed, stiff, sore and tired just a few hours ago. I don't just GET up, I can't just GET up, I have to roll out the bed, and roll very slowly. And here it is yet an hour up and already tired, already hurting. Wanting to go to church, but church has to once again come to me. Just thinking of what to wear is wearing me down. (Thank God for the simple Black Dress, every woman should have a plain black dress) So it is not so much as what to wear, but having the STRENGTH to even get dressed. At best, I slowly get down the stairs and retreat once again to the rocker.

Listening to the first sermon and hearing this pastor speaking of the believer who stopped going to church has started going down, and I must disagree with him, because when health fails and no one seems to care... It's hard to get up and go, the Woman with the Issue of Blood for twelve years (Mark 5:25) needed help and had none, had spent ALL she had, was refused social security and because of her issue was denied fellowship, she was alone day after day, year after year in another flare, til she heard HE was coming. Things kept getting worse before they got better.

Physically I feel and am caught in another Flare, yes, you can tell it's gonna be one of those days, BUT Spiritually, I feel like a giant ready to Press, Push, Persevere and Touch the hem of His garment.
Have a super day, Flare or not, pain or not~

The Toothpick Theory

Since being diagnosed with Fibromyalgia a few weeks ago, I have noticed a decline in any interactions with most of my friends and family, mostly due to the part of MY constant pain. I have one friend who has stuck beside me through all of puzzlement of Fibromyalgia, but while yet still not understanding fully what my day entails. I have told her of the Constant Pain, the Fatigue and the Fog, yet still I don't think she understand, I even have shared the Spoon Theory which was written by Christine M, a lady with Lupus, with her as well as many many others.

But with Fibromyalgia, because of the PAIN, I needed a visual to really hit home to a point where she, as well as others and doctors would understand. Then God gave me the "Toothpick Theory". Now, I normally keep toothpicks in my purses, and sometimes, I forget they are there and upon reaching for something in a different purse (because I changed purses almost daily), and because my bags were so HUGE, I would always get "stuck" by a toothpick. It was a reminder to me that the toothpick was unsuspecting and yet painful. The toothpick is a constant reminder of the pain, sometimes, I am aware and more cautious, however there are those times when the pain is so great, the FOG is so thick, that I forget the toothpicks is in my purse/pocket. Imagine getting up in the middle of the night for some water, I say, only to find a toothpick in the dark lodged in the carpet. Although you are stuck either in the finger, hand or foot, the pain ravishes through your whole body. All the while verbalizing that she understands as I am explaining what this pain that is consuming me is doing to me, to my life as I knew it.

If you are like me, you carry several toothpicks and I am guilty, but I do sometimes use a toothpick and toss it back in my bag, only to get stuck again by it. Now in looking at the toothpick in relationship to the Fibromyalgia disease that affects some 10 million people, mostly women who are in their prime of life, and is even attacking women now, in the younger years and a few men.

Imagine, I tell my friend with this Invisible question mark of confusion on her forehead, having a BOX of toothpicks in your hand, that you are conscious of holding onto, you know one thing: You are in pain and your pain is connected to the toothpicks, PAIN we will call Fibromyalgia, even if you put them down or toss them, the fact still remain, the PAIN is on your mind, and you try to be careful not to repeat what you have done that caused THAT pain, whatever it may be, but because the pain is coming so rapidly, you have no idea WHAT, WHEN or WHERE it really originated from, that alone consumes several toothpicks because you are experiencing PAIN, all the time. Now what if each toothpick is assigned to a body part, a muscle, a fiber, a tendon, a bone, a joint, every fiber of your being? You may not get attacked by all the toothpicks at once, but there are days when you are unsuspecting, you get attacked by several at once. The toothpick may produce pain in your back, your hips, your knees, your arms, your hands, your legs, your thighs, any and everywhere. Your head, neck and shoulders usually go hand in hand. You are hurting so bad, so much, that you are losing sleep and can't get up and move around to even go to work by now, because everything hurts!

You have a toothpick for constipation and IBS, a toothpick for chestpains. There is another for the itching of your skin and the sensitivity of just wearing light clothing. You have a toothpick poking you for the rash on your foot that won't go away, and a toothpick for your migraine. There is a toothpick that is assigned to outburst of crying because you really don't know what is going on in and with your body and one for the FOG that is poking your thought and reasoning process and yet another toothpick POKING you because you have started having little flashes of lightening rushing through your brain, that you now are being tested to see if you have had any TIA's also known as MiniStrokes. As she asks and I explain to her what a stroke is, it is in being when your brain is not receiving oxygen, or maybe a blood clot that burst. I asked her if she remember her son being born without receiving oxygen and the effects it had on him, and how it affected his speech and thought pattern, yet he is still able to function as an otherwise "normal" person, and she said yes, I said, that is what a Stroke does, it affects your speech, so sometime the pain is so intense we know what we want to say, but have trouble saying it or lose our thought in the middle of a conversation.

You have a toothpick that is causing you to have dry eyes from out of nowhere and a JAW that is constantly Clenched. You have several toothpicks that has somehow broken and with their jagged edges their name is called STRESS, and it is taking you through a metamorphosis, because now it is affecting your attitude, your mood, you are slowly getting more and more depressed, even to the point of hopelessness, it is causing your blood pressure to rise, feelings of having a heart attack and even some anxiety, and this is only the beginning. You may have gotten rid of the toothpicks, but the truth of the matter is there are some you have overlooked, you willed them to be gone, you prayed for the pain to go away, but there is still some attached to you. And even though you were a Professional or maybe even A Minister, a Bible Study Teacher, PAIN still came and God did not remove it, but rather told you that there was a Purpose for YOUR pain.... These toothpicks attacks Nurses, Preachers, Teachers, Mothers, Students, Men, Women and some Children, Golf Players, Social Workers, Pharmacists, Actresses, and even Doctors just for beginners.

Then you have family and friends, some who tell you to just take some supplements or vitamins or get up and exercise and you will feel better, or they offer their unsollicited advise of what will work or what will cure THIS, even though there is no cure, and they have not walked ONE day in THIS kind of pain, BUT because you don't have the strength or energy that the PAIN has sucked out of you, you don't even offer a rebuttal, you can't. Toothpicks! Because they say things, THAT HURT! They tell you to pray when the truth is you never STOPPED praying. They tell you that you don't look sick and THAT, is a toothpick in your eye, because this time, it's your doctor, or a toothpick in your heart, because your own family telling you, it's all in your head. But they never stopped to realize, you are holding toothpicks because you haven't seen or talked to them in months, because the PAIN has driven you to a place of seclusion and isolation. Toothpicks! To my friend I say, everything that now affects me be it physically, emotionally or spiritually is like being stabbed with toothpicks in every part of my body, everyday, all day. And though I can pull one out another emerges with another name, another diagnosis. For some reason, one pain surrenders while another runs rampant through my body.

Toothpicks have caused me to decline working, even though I am still of workable age, toothpicks have caused me to apply for Social Security way too soon, and/or foodstamps, Toothpicks has stopped me from going to church regularily, because people want to hug, and HUGS HURT. Toothpicks has caused me to have to refuse the family reunion, the Sunday dinners, most activities that involve a lot of walking or thinking, toothpicks has caused me everything.... But has increase my Hope, my Faith and my Trust in God, who is Bigger than this monster.

I pray that those who are suffering with Fibromyalgia, or any other debilitating illness that preludes with unrelenting pain, you can use this to explain the type of Pain you experience every day, all day, because there is no cure and the treatments offered may work today, they may even work for awhile, but at the end of the day, you are STILL in pain and it is not guaranteed to keep working, and although some treatment worked for someone else, it may not ever work for you.

@Veronica "Pinki" Moore, 2011

This past week

It has been a few days since I really have posted on my personal journey with this FibroMonster. Have since received D Day#2 which came back with a verdict of Major Depression and had to go to the hospital the other day, it took allllllll day long for two appointments. Put on antibiotics for the H pylori which is an infection in my stomach lining that no doubt has been there for years, unknowing to me until I picked up the meds, she, who happened to be a "new" doctor that I would see for this one time only, had ordered Flagyl, I don't like Flagyl, it makes me sick, it has this nasty metallic taste. The other wonderful meds are Omeprazole, Amoxicillin and Clarithromyacin.... Not to mention, doctor #2 for the day, had her prescription orders as well, Serequel and something else to help me sleep peacefully.

Went out today to run about two errands and to get some food, while in the store from out of no where, my legs just LOCKED up and started screaming in pain, so I quickly as I could made my way back home, and once home, it was pretty much spending the rest of the afternoon and evening in the rocking chair. Even as the night wore on, my knees were like on fire and screaming in pain. The pain that is running down my back is like a knife searing through my every muscle, bone and joint. My hands and feet feel ablaze and I am tired, but I know the moment I lay down, my eyes will open wide and the thoughts in my mind will start the race again.

I never did get around to any of the writing that I wanted to do, planned to do, for you see, with Fibromyalgia, the plans are constantly being changed and rearranged. I look at young and vibrant people on line, in movies, dancing, acting, living.... and I remember, that use to be me. Wondering how this could happen to me, I remember crying myself into a deep sleep at least twice this week, BEGGING God to take me, because I just could not do this anymore. This pain is relentless. This is the weekend for the 4th of July, but can't even plan for celebration, at best, to have a day FREE from pain.

How can you say that, when you do not know?

How can u say you are my brother, my sister/my friend and you are not able to look in my face and see my PAIN? How can you claim to love me, when u don't even know me. If we are a part of the body of Christ, and I am the toe, YOU should feel my pain, even if you are the finger.

It is impossible to a part of the Body and not feel what another feels. How can you NOT hear me when I cry, when my face is stained with a permanent streak of tears? How can you claim to love me, when you approach me and I won't let you hug me, because even HUGS HURT ME?

How can you tell me to Pray, when YOU have not prayed for me knowing it is hard for me to even get on my KNEES, how can you tell me to EXERCISE, when I can barely WALK, how can you tell me to buy VITAMINS or SUPPLEMENTS when my job has been REPLACED by handouts.

How CAN you tell me to eat healthier, when I can't stand long enough to COOK and going out is a Luxury I no longer can afford. How CAN you tell me to take a NAP and I will feel better, when I have been up for 5 days STRAIGHT?

How DARE you tell me I dont LOOK sick when you know NOT what I feel.... for you see, Jesus is the ONLY one who is acquainted with THIS pain, unless you have this, you will never understand this...

Not I am not one weak in my faith, I am using my FAITH to FIGHT this, whereas you my friend, my sister, my brother, you are STILL taking high blood pressure medication, you are still taking insulin SHOTS, you are still taking (___________________) You don't look like you have High blood pressure? You don't look like you have HIV... don't judge me unless you KNOW me.

Sometimes God ALLOWS things like Fibromyalgia to come along to pull ONE closer upon His BREAST where we may feast on the nourishing WORD that is needed to LIVE that you should have gave~

10 Things "NOT" To Say To Someone Who Has Fibromyalgia

The following was written by Pam Ryan. Those with Fibromyalgia and Chronic Fatigue Syndrome will nod their head in agreement and a well-known understanding. Those who do not understand, will be wiser.


"10 THINGS "NOT" TO SAY TO SOMEONE WHO HAS FIBROMYALGIA...
by Pam Scott-Ryan

10. We all get more aches and pains as we get older.

The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn't hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.

9. I think I have that, too – I'm always tired.

This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are like someone pulled your plug, cutting of your source of power. It's kind of like taking the batteries out of the Energizer bunny.

8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.

Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but they suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn't work well enough to allow you to consistently work a 40-hour week. And it doesn't help dispel the extreme fatigue that usually accompanies FM.

7. My doctor says fibromyalgia isn't a real disease; it's just a wastebasket diagnosis.

First of all, this doctor obviously hasn't kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don't approve medications for imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can't figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.

6. If you got more sleep, you'd feel better.

Well, duh! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep you need.

5. I read about this new product that cures fibromyalgia.

This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently some kind of “natural” supplement being sold through a multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it's someone closer to me who is likely to keep asking if I've tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can't afford to try them all. Read Let the Buyer Beware for tips on how to evaluate product claims.

4. At least it's not fatal.

My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I'd know there was an end to the pain.” I rarely say that, though. Of course I'm glad it's not fatal. But that doesn't help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I'm thinking when someone makes this comment. At least it might get their attention.

3. You just need to exercise more.

Often this is another way of insinuating that you're lazy. This comment in particular has always bugged me. Perhaps it's because I used to be a dancer and aerobics instructor. If more exercise were the answer, I'd be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it's only one part and it has to be approached slowly and carefully to avoid triggering a flare. Read Fibromyalgia and Exercise for more information on how to incorporate exercise into your FM treatment plan.

2. But you don't look sick.

This comment puts the FM patient between the proverbial rock and hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don't want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we're sick. If you think about it, most chronic illnesses are invisible. My dad had heart disease but looked great until the moment he died from a massive heart attack. My mom had pancreatic cancer but looked fine. She didn't even know anything was wrong until it was too far gone to treat. She didn't “look sick” until the last couple of weeks of her life when she was confined to bed. Just because someone doesn't have visible sores or a crippling deformity doesn't mean there's not a serious illness just under the surface.

Finally - the number one thing you should NOT say to a fibromyalgia patient:

1. It's all in your head.

This is the all-time worst and most insulting thing you can say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You're right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said."

I hope this article allows you to think before you comment. Fibromyalgia and Chronic Fatigue Syndrome are real diseases. Although the person looks like there is nothing wrong, if you watch, you will notice how they gingerly stand from a sitting position or lower themselves into a chair. You will notice periodically that they substitute a word for another. Their cognitive process works as if the electricity can't get through the line without interruption. Their balance is not as good as it once was. They have trouble lifting a ten pound bag of potatoes. They are always physically and mentally tired. Be observant of your friends with Chronic Diseases, including Fibromyalgia and Chronic Fatigue Syndrome. Your friendship with be better for it.

You can .... be of help to those with Chronic Diseases, ask how

You can .... explain your Chronic symptoms to your friends. If you are like me, you will cry while explaining.

You can .... take a nap today .... do it!

The Butterfly Theory

THE BUTTERFLY THEORY:
Just as the Caterpillar one day had to experience change, had not the Butterfly that was within Embrace that which was to be taking place and Confront the fact that her life was changine and was moving from a slow state to one of freedom and flight, the Butterfly began to Embrace the Change that she needed to Confront, and Challenge the Change in order to Conquer it. Although the Butterfly, just like those afflicted by Fibromyalgia, experienced pain and agony as her body began to take on a new life, things began to change from within, she no longer could crawl with caterpillars, for she now has Wings, Wings of hope, Wings of change, Wings to soar. If life has brought pain to your door and invaded your body, pushing you OUT, EMBRACE the Change, Face and Challenge it, so you may Soar~ Soar high, Soar Fly, Soar Free, my beautiful Fibro~<3~Butterfly, Soar~ @ Veronica Moore

More travel tips

If you are like me, having been diagnosed with one of those "Invisible" disease of the which I am debating as to whether it is invisible or not, because anyone with eyes can look upon the face of one in Debilitating Pain and SEE, the PAIN. Perhaps you have those invisible friends, your other friends cannot see: the "Fibromonster" and her sidekick, "Allodynia", In preparing to travel or just to go to the grocery store I find I needed to take special precautions and measures to ensure that I could (1) keep up (2) Avoid a flairup and the Fog (3) Avoid a major case of uncontrollable pain and fatigue on the journey between point A and B of my trip. It's no easy task and it takes planning and care to manage.

I want to share some tidbits and tips to managing a busy exciting, refreshing and relaxing vacation, without the twins (Fibromonster and Allodynia). Now of course all of us are unique and our diseases are different in the way they manifest in each of our bodies so this is general information that you can tailor to meet your own needs. I'm am all for the easy straight route to the solution of whatever may arise.

(1) MAKE SURE YOU HAVE ENOUGH OF YOUR MEDICATION ON HAND. Plan ahead and be sure that you even take a extra "just in case". You never know if weather or transportation, flat tires, dead batteries, a missed flight, will be a problem and cause a delay in your travel plans. ALWAYS TAKE EXTRA.

Also, NEVER take whole bottle of prescription medications, unless they are your NARCOTICS. Save some smaller old RX bottles or purchase the small plastic baggies (in the pharmacy dept) and transfer what you need and leave the rest at home. That way if there is a situation where meds are lost, you still have some when you return home. Check out the weather channel before you head out, if you are headed for the Gulf coast, are you going during Hurricane season, are you going through the Tornado valley, are you headed toward a place where there is a chance of being snowed or flooded in.

2.) Take extra comfort measures, for example ointments for pain relief, instant cold packs, ThermaCare Heat Wraps or whatever is your preference. There are a variety of wraps for different areas of the body and the heating mechanisms last for a good 8 hours and sometimes more.
Another comfort measure I take is a really good and comfortable pillow and/or blanket that I use at home. (Or purchase an extra one like the one you use at home) For me, this saves A LOT of headache, neck ache and frustration. Having the "right" pillow or blanket while on vacation can make things go much smoother for you and really, it only takes up a little extra space.
Take along extra over the counter medications that will help you feel better on your trip. Who wants the hassle of the ever present overactive stomach, bladder, headaches, muscle tension...etc without an immediate and reachable "buddy" to help you out?

Here's a few favorites from my list, and many others in my Therapy Bag:
A) chewable Pepto-Bismol tablets (or generic version)
B) Dulcolax stool softener (or generic version)
C) Excedrine Migraine (or generic version)
D) chewable vitamin C.
E)Arnica for muscle pain. (You can find it in most health food stores such as Sprouts)
F) chewable Junior Tylenol for the kids. (or generic version)
G) Uristat or a similar remedy for a urinary tract infections (*or take cranberry supplements with you for a daily dose to maintain a natural balance in the body)
H) Band-aids of all sizes AND Friction Block stick by Band-aid. (This product is AWESOME for your feet! I keep mine in my purse to keep my feet from blistering.)
I) Imitrex for Migraine
J)Softee Socks
K)Softee Gloves
L)Knuckles
M)Softee slippers
N)Cool eye pad
O)Favorite music
P)Favorite book
Q) Journal
R)TherapyCow, (my most favorite heating pad)
S)StressFree Bath and Lotion Toiletry items

Some other "buddies" to consider are: anti-nausea medication, motion sickness help, ear plugs, extra eye glasses or sunshades, anti-snoring helps, contact lens cleaners/re-wetting drops, sinus medications, allergy medications, etc...

Keep your "buddies" in an accessible place/bag that is near to you either on the plane or in the vehicle. It takes a lot of stress away when you know help & comfort is an arms length away. It's worth it to have things on hand that you don't have to worry about going out and finding later or when you're in a bind. Get travel sizes and minis so that you're not stuck with tons of bottles and boxes taking up huge amounts of space or putting a dent in your wallet. There are all kinds of inexpensive organizers out there that can easily accommodate a nice little portable way to keep everything easily accessible and manageable.

Keep your clothing and shoe choices realistic with your activity level and body pain management. If you know you're going to need more comfy clothes rather than dressy restrictive clothing, then find stylish but comfortable clothing and shoes to take with you. You know best your limitations. I personally take 3-4 outfits that are super comfy and stretchy because there are days when I need to wear soft and stretchy clothing that I don't necessarily need to button or zip or that allows my muscles to relax. Sometimes a pair of Capris, shorts or sweats and a soft cotton T-shirt paired with tennis-shoes or no heel shoes are just right. The key is to dress in a way that works for pain management but still makes you feel good about yourself so that you can relax and make the most each day and activity. Remember one of my favorite sayings: "Fight for your quality of life!"...

(3) Don't allow yourself to rush, be push too hard, or take on more that you can handle. Remember to listen to your body, when it tells you to stop and rest. Fibromyalgia and the twins: Fibromonster and Allodynia is hard enough to deal with. You have it/them, period. If other's can't or won't accept it, do what you have to do to make your trip comfortable. You may have to pass that game of volleyball or the walk on the beach, but the truth is, you made it as far as you did, remember you have to get back home.

So what about your travel tips and hints, do you have any to share? Post some of them here for all of us to read and take advantage of. I'm always looking for good ideas and suggestions to make fighting for my quality of life a little easier.
you ARE NOT alone. Don't suffer in silence. Find ways to reach out and connect with others who are going through what you are going through. There is strength to be found in the understanding of another who shares your situation. (((HUG)))

Have a blessed, stressfree, flare free, safe trip and by all means, have fun!

10 tips for travelling

I thought this was pretty useful since I am doing a lot of travelling now. TOP 10 TIPS FOR TRAVELLING WITH FIBRO

1.Give yourself ample time to plan and pack. Try to be packed a week before your departure. Work out what the specific problems associated with travelling are going to be for you, whether it’s sitting still, needing a toilet frequently or having to walk long distances in an airport.

2.Ask for and accept help. It’s all very well being independent, but if it means you arrive at your destination in a major flare, it’s unlikely to be worth it. If you need a wheelchair to get on the plane ask for it, if you think you will be doing a lot of walking, talk a cane, it will help.

3.Try and be in the best shape possible physically before you even start, get a good night sleep, drink extra water and eat more fruits and veggies.

4.Have a portable travel medications pack. Try not to check your meds with your luggage, or pack them in the bottom of your suitcase, keep them on you or in your carryon.

5.Take travel supplies of pain relieving products, such as TENS unit, tennis balls, inflatable beach ball....

6.Take your own easy to open and digest snacks and water, don't forget antinausea meds.

7. Choose your clothes and shoes wisely so that you can dress comfortably.

8.Take comfort items, such as your favorite blanket and travel pillow, heating pads, temporary icepacks.

9.Choose your seating position in the vehicle, whether it is a car, train or ‘plane, so as to make it as easy as possible for you.

10.Stretch and take plenty of breaks.

Don't forget to relax, take it easy and enjoy yourself. Take it one step at a time. The whole point of preparing for a journey when you have Fibro is to make it easier for you, not to stress

http://www.poodwaddle.com/clocks/worldclock/

Info for research

Where Can People Get More Information About Fibromyalgia?

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health

1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484
Toll Free: 877-22-NIAMS (877-226-4267)
TTY: 301-565-2966
Fax: 301-718-6366
Email: NIAMSinfo@mail.nih.gov
Website: http://www.niams.nih.gov

National Center for Complementary and Alternative Medicine
National Institutes of Health

P.O. Box 7923
Gaithersburg, MD 20898
Phone: 301-519-3153
Toll Free: 888-644-6226
TTY: 866-464-3615
Fax: 866-464-3616
Email: info@nccam.nih.gov
Website: http://nccam.nih.gov

Social Security Administration

6401 Security Boulevard
Baltimore, MD 21235
Toll Free: 800-772-1213
TTY: 800-325-0778
Website: http://www.ssa.gov/disability

American College of Rheumatology (ACR)

2200 Lake Boulevard NE
Atlanta, GA 30319
Phone: 404-633-3777
Fax: 404-633-1870
Website: http://www.rheumatology.org

Advocates for Fibromyalgia Funding, Treatment, Education, and Research

P.O. Box 768
Libertyville, IL 60048-0766
Phone: 847-362-7807
Fax: 847-680-3922
Email: info@affter.org
Website: http://www.affter.org

Fibromyalgia Network

P.O. Box 31750
Tucson, AZ 85751-1750
Phone: 520-290-5508
Toll Free: 800-853-2929
Fax: 520-290-5550
Website: http://www.fmnetnews.com

National Fibromyalgia Association

2121 S. Towne Centre Place, Suite 300
Anaheim, CA 92806
Phone: 714-921-0150
Fax: 714-921-6920
Email: nfa@fmaware.org
Website: http://www.fmaware.org

National Fibromyalgia Partnership, Inc.

P.O. Box 160
Linden, VA 22642-0160
Toll Free: 866-725-4404
TTY: 866-666-2727 (free of charge) or 540-622-2998
Email: mail@fmpartnership.org
Website: http://www.fmpartnership.org

Arthritis Foundation

P.O. Box 7669
Atlanta, GA 30357-0669
Phone: 404-872-7100
Toll Free: 800-283-7800
Website: http://www.arthritis.org

Key Words

Adrenal glands. A pair of endocrine glands located on the surface of the kidneys. The adrenal glands produce corticosteroid hormones such as cortisol, aldosterone, and the reproductive hormones.

Analgesic. A medication or treatment that relieves pain.

Arthritis. Literally means joint inflammation, but is often used to indicate a group of more than 100 rheumatic diseases. These diseases affect not only the joints but also other connective tissues of the body, including important supporting structures such as muscles, tendons, and ligaments, as well as the protective covering of internal organs.

Chronic disease. An illness that lasts for a long time, often a lifetime.

Connective tissue. The supporting framework of the body and its internal organs.

Cortisol. A hormone produced by the adrenal cortex, important for normal carbohydrate metabolism and for a healthy response to stress.

Fibromyalgia. A chronic syndrome that causes pain and stiffness throughout the connective tissues that support and move the bones and joints. Pain and localized tender points occur in the muscles, particularly those that support the neck, spine, shoulders, and hips. The disorder includes widespread pain, fatigue, and sleep disturbances.

Fibrous capsule. A tough wrapping of tendons and ligaments that surrounds the joint.

Inflammation. A characteristic reaction of tissues to injury or disease. It is marked by four signs: swelling, redness, heat, and pain. Inflammation is not a symptom of fibromyalgia.

Joint. A junction where two bones meet. Most joints are composed of cartilage, joint space, fibrous capsule, synovium, and ligaments.

Ligaments. Bands of cordlike tissue that connect bone to bone.

Muscle. A structure composed of bundles of specialized cells that, when stimulated by nerve impulses, contract and produce movement.

Nonsteroidal anti-inflammatory drugs (NSAIDs). A group of drugs, such as aspirin and aspirin-like drugs, used to reduce inflammation that causes joint pain, stiffness, and swelling.

Pituitary gland. A pea-sized gland attached beneath the hypothalamus at the base of the skull that secretes many hormones essential to bodily functioning. The secretion of pituitary hormones is regulated by chemicals produced in the hypothalamus.

Sleep disorder. A disorder in which a person has difficulty achieving restful, restorative sleep. In addition to other symptoms, people with fibromyalgia usually have a sleep disorder.

Tender points. Specific places on the body where a person with fibromyalgia feels pain in response to slight pressure.

Tendons. Fibrous cords that connect muscle to bone.

Sitting in my Purple Room

Sometimes in life we find ourselves sitting in our rooms with nothing to do, nowhere to go, no one to talk to, no one to understand, everything has changed around us and people expect you to recover with a tylenol, Tramadol, Vicodin or antidepressants, some exercise, more prayer or by taking vitamins. They want you to PUSH yourself to get up because NO body can sleep, whine, complain THAT much about pain. But for me, for the millions like me who have been stripped of life, to live looking out the door of their room, it is so.

Our get up and go has gone, our crystal clear thoughts and quick decisions that we once made is now clouded by the FOG and a memory deficit that comes at lib. We wonder, we search, we hope, we pray for the cure, yet we go unheard. Friends abandon us and those who remain, we find ourselves always telling them about the Monster that has moved in, the HOME INVADER, the VICIOUS INTRUDER called Pain. The creature who stole life and livelyhood, dreams and jobs, careers and schooling, the monster that stole my childs mother, my husbands wife or vise versa.... the creature which cannot be seen, but if given a closer look, you can see the Invisible Monster is anything but, just look at our faces and you will see the residue of pain, or in the way we sit, or sit ever so easily, the way we grimace or moan just silently enough so as not to disturb you.

You will see we have withdrawn, we don't attend any functions and if we do, it is days before we surface again afterwards. We don't complain, because family and friends have told us we complain too much or that we don't LOOK sick... So we retreat, we take refuge in our room and look for the cure, look for hope, look for an answer, we look for YOU. One who claimed their undying love for us, that like Peter, when our life hit the place of Gethsemane we find, yet through it all, we sit in our room, our purple room, alone and looking, in pain, in the FOG with questions no one can answer....

Fibro Fog or something else?

What is Fibrofog?

Fibrofog is a term given to the variety of cognitive problems that many fibromyalgia sufferers face during their illness. Fibrofog encompasses memory loss, difficulties using language, and difficulties with learning. These symptoms tend to descend in a haze or "fog," around the sufferer. Fibrofogs can occur at any time and can vary in intensity when they do occur. Fibrofogs tend to be at their most severe during flare ups in pain.

Fibrofog affects about both women and men who have fibromyalgia pain, though it tends to hit women more often. Women between the ages of 30 and 50 are most likely to be affected by fibrofog. Just when I thought I was out of this age bracket, I get blindsided at the age of 49. Episodes of fibrofog typically last only a few days, though sometimes severe fibrofog can last for weeks or even months. Fibrofog can be frustrating, when you know you know something, someone, or a name of someone and you just CANNOT remember!

Symptoms of Fibrofog
Fibrofog is one of the most common yet unrecognized symptoms of fibromyalgia. If you have fibromyalgia signs and symptoms it is important to be aware of fibrofog so that you can seek appropriate treatment and manage your illness more effectively. Some symptoms of fibrofog include:

short term memory loss
difficulty remembering where you put things
difficulty remembering plans
difficulty with language, including trouble holding conversations, understanding conversations, and expressing thoughts
difficulty finding the "right" word to use in conversation
trouble remembering simple numbers
transposing letters and numbers
trouble concentrating and focusing
trouble retaining new information

It works well to have a journal, a LARGE calendar hanging in a familiar place or a PDA/palm pilot or similiar device in which you can use to chart and document things. I find that large calendar hanging in the kitchen perfect, the placing of those vital meds next to my toothbrush very valuable.


Causes of Fibrofog
The causes of memory loss and fibrofog are as yet undetermined; however, a number of factors could be at the root of these cognitive impairments. It is apparent that there is no real problem with the mental capacities of people suffering from fibrofog. Instead, there must be underlying problems that cause the brain to be unable to complete memory functions. Many of the sufferers of ff were at one time very active in their community, with work, family, activities and more.
Sleep Deprivation: Sleep disorders are one of the primary fibromyalgia signs and symptoms. Lack of adequate sleep can affect the brain’s ability to produce enough of the neurochemical serotonin, which aids in laying down memory.


Decreased Blood Flow: Studies show that fibromyalgia disability can cause decreased blood flow to certain areas of the brain responsible for creating short term memories. This lack of blood flow may prevent the brain from adequately creating new memories.

Chronic Pain: The chronic pain caused by fibromyalgia may actually inhibit the brain’s ability to create memories. Processing pain signals takes up a lot of the brain’s time and energy, especially in someone with fibromyalgia. This excessive pain may therefore reduce the amount of time the brain spends on trying to form new memories. Pain also produces large amounts of stress which can be one of the causes of short term memory loss.

Depression: A large percentage of people with fibromyalgia also report that they suffer from anxiety and depression. Depression and memory loss definitely seem to be linked. Depression lowers the levels of serotonin in the brain, preventing new memories from being laid down. Low levels of serotonin are also linked with learning difficulties.

Effects of Fibrofog on Fibromyalgia
Fibrofog tends to have negative effects on fibromyalgia symptoms and the course of the illness. Fibrofog can cause people with fibromyalgia to forget important self-care techniques including stretching and exercise. This can cause the pain of fibromyalgia to become worse.
In a recent study involving people with and without fibromyalgia, those with fibromyalgia reported more trouble with memory, concentration, mental confusion, and speaking. Patients with fibrofog also complained of more pain, increased fatigue, and more difficulty sleeping.

What IS Fibromyalgia?

Fibromyalgia makes you feel tired and causes muscle pain and "trigger or tender points." These points are places on the neck, shoulders, back, hips, arms or legs that hurt when touched. People with fibromyalgia may have other symptoms, such as:
Widespread musculoskeletal pain
Migraines and other Headaches
Non restorative sleep
Fatigue
Psychological distress
Specific regions of localized tenderness
Morning stiffness
Tingling or numbness in hands and feet
Headaches, including migraines
Irritable bowel syndrome (IBS)
Problems with thinking and memory (called "fibro fog")
Painful menstrual periods and other pain syndromes

The American Medical Association (AMA) reports that Fibromyalgia is currently the second most common disorder diagnosed by rheumatologists; it affects nearly 20% of their patients. FM is seen worldwide, in all ages and ethnic groups, and in young children through older adults, although for most individuals the symptoms begin in their 20's or 30's.

The community prevalence of FM is reported as 1% in the United Kingdom and up to 5% of the total U.S. population (approximately 3.4% of all women and 0.5% of men). That is, 7 to 10 million Americans have FM. In the US, approximately 90% of those diagnosed are women between the ages of 20 and 50. It occurs in females to males in an approximate ratio of 20 to 1. People with rheumatoid arthritis and other autoimmune diseases are particularly likely to develop FM.

Fibromyalgia is a chronic illness that causes immense physical pain and debilitating fatigue. Classified as a syndrome, fibromyalgia is not a disease. Instead it is a condition that causes many different symptoms. These symptoms affect all systems in the body. Fibromyalgia plagues up to 5% of the population, with 6+ million sufferers in the United States alone. The name fibromyalgia comes from "fibro" meaning fibrous tissue (such as tendons and ligaments), "my" meaning muscles, and "algia" meaning pain.

Fibromyalgia's main symptom is widespread musculoskeletal pain. This pain affects the ligaments, tendons, and muscles throughout the body. Ligaments are made of tough tissues which attach to the bones in your body. Tendons help to attach muscles to your bones. Muscles allow you to stretch and flex various body parts.

Fibromyalgia patients often feel like they are aching all over; muscles feel sore, stiff, and overworked. Muscle twitches are also common in fibromyalgia, adding to the pain of the illness. Sometimes muscles can even feel like they are burning.

A Chronic Disorder

Fibromyalgia is a chronic disorder, which means that pain can continue for months and even years. Unfortunately, fibromyalgia treatment is often difficult to come by and many people must suffer in silence. However, fibromyalgia pain generally does not worsen over time, and it doesn't cause inflammation of the internal organs or muscles.

http://faithandfibromyalgia.blogspot.com/ Fibromyalgia is a chronic illness that causes immense physical pain and debilitating fatigue. Classified as a syndrome, fibromyalgia is not a disease. Instead it is a condition that causes many different symptoms. These symptoms affect all systems in the body. Fibromyalgia plagues up to 5% of the population, with 6+ million sufferers in the United States alone. The name fibromyalgia comes from "fibro" meaning fibrous tissue (such as tendons and ligaments), "my" meaning muscles, and "algia" meaning pain.Fibromyalgia's main symptom is widespread musculoskeletal pain. This pain affects the ligaments, tendons, and muscles throughout the body. Ligaments are made of tough tissues which attach to the bones in your body. Tendons help to attach muscles to your bones. Muscles allow you to stretch and flex various body parts.Fibromyalgia patients often feel like they are aching all over; muscles feel sore, stiff, and overworked. Muscle twitches are also common in fibromyalgia, adding to the pain of the illness. Sometimes muscles can even feel like they are burning.A Chronic DisorderFibromyalgia is a chronic disorder, which means that pain can continue for months and even years. Unfortunately, fibromyalgia treatment is often difficult to come by and many people must suffer in silence. However, fibromyalgia pain generally does not worsen over time, and it doesn't cause inflammation of the internal organs or muscles.http://faithandfibromyalgia.blogspot.com/

Relaxing Bath

Look no further than your bathroom for relief. Your grandmother always said that there's nothing much that a bath can't fix. A nice, long soak may be just the ticket to put some steam into your motor and get you going.

Bridge The Gap

Conversely, a warm bath may help soothe you enough to lull you to sleep after a wearying day of battling your condition. There are times when the fatigue seems overwhelming, but it never fails to surprise us just how fatigue can linger without ever resulting in restful sleep. Sometimes a special bath can help bridge the gap between fatigue and elusive sleep.

Here are some tips for making the most out of bath time:

*Darken the room but provide some soft light with candles.

*Make sure the bath isn't too hot. Too hot equals poor circulation and fatigue. You want to lull yourself to sleep, not wipe yourself out.

Self-massage

*Treat yourself to a self-massage just before you have your soak. Start with your temples, move down to your neck muscles, and on down to your upper arms. Massage your hands, then your thighs, calves, and feet.

*Listen to music, or if you prefer, wear ear plugs to block out distracting household noise.

*Place an oil burner in your bathroom and use any essential oils that you like. For serenity, try: frankincense, germanium, lavender, and ylang ylang.

*If your eyes feel very tired, try wearing an eye mask during your soak.

1) Bath of Roses: Add 6-8 drops of rose essential oil to your tub. Give your face an occasional spritz of rose water as you soak. Throw in some rose petals (from unsprayed roses) for good measure. Nosh on good quality dark chocolate, and listen to love songs. Repeat the following mantra, "Every cell in my body is healthy and loved."

Slow Down

2) Slow Down Bath: This bath recipe is for days when you feel rushed and harried and feel desperate for calm. Add to your bath the following essential oils:

6 drops ylang ylang

4 drops Vetiver—this herb lifts depression and removes the burnout feeling

Journaling

I am a journaler, I write everything down, I would be classified as a queen of journals. I just like the pretty books in which I can write down my thoughts, write down words of inspirations, conversations with God, and the events of this Fibro monster. You too, may want to consider starting a journal listing your daily events as you battle the monster within. A symptom journal is an excellent way to relieve stress, recall events, pain episodes, how you felt, what you were doing at the time, what relieved the pain, what didn't, express emotions and discover new ways to cope with fibromyalgia. Your Fibro journal does not have to focus specifically on your fibromyalgia symptoms but can be an open diary on your physical, mental and spiritual health. It can also prove to very beneficial when going to the doctor as a memory jogger for what you wanted to say, but can't remember, I would go as far as having things color coded, and sections, such as a Doctor question section, a doctor name and number section, past and present, a food section, what you ate, how your body responded to it....

What is the Journal For?
Writing in a journal can be very personal or open diary on your life. Most people keep private journals to identify their changing moods, to set goals, improve communication skills, or simply to release pent up emotions. Whether you like to write in point form or in paragraphs is not important when writing in diaries.
For most people, the purpose of a journal is to understand yourself better, to get a better idea of who you are and what you want to do with your life. What makes a fibromyalgia symptom journal different is that you can also keep track of your symptoms and flare-ups, possibly identifying certain triggers.

Make a Commitment to Writing
You could begin by making a commitment to write about your symptoms, moods and feelings on a weekly basis. You can document your fibromyalgia symptoms, your moods and feelings during the day, what triggers your fibromyalgia symptoms and when and if you were able to relax. You could write down a list of tasks and errands that you want to get done that week and check them off every night when you go to bed. This will give you a sense of pride and accomplishment at achieving your goals. Later on you can move on to bigger goals and write out the steps to achieve those goals.
If you make journal-writing a habit, you will eventually detect the patterns of your thoughts and feelings associated with fibromyalgia. You can go back through your journal and re-read your entries to see how your attitude or feelings have changed or stayed the same regarding fibromyalgia or any other aspect of your life. You can also notice any emerging trends as to when your symptoms or better or worse. This may help you avoid those factors that can trigger symptom flare-ups or seek our fibromyalgia relief before your symptoms get too unbearable.
Benefits of a Symptom Journal
Please don't beat yourself up if you don't write for a day or two or seven, it's YOUR journal, you are the CEO of the journal book. There is no right or wrong way to journalize, afterall, it is your account of your life and events and you can write what you want. There are several benefits to keeping a symptom journal a few times every week. The major benefit of keeping a journal is discovering what can trigger a fibromyalgia flare up. When you have a written record of a fibromyalgia flare up, your symptoms, your mood and the events preceding the flare up, you are better equipped to deal with that type of situation the next time it arises. Other benefits to keeping a journal include:

relieves stress
organizes appointments, finances, fitness or health goals
enhances communication skills
strengthens your friendships and relationships
builds self-esteem and a sense of independence
increases awareness of fibromyalgia symptoms
powerful tool to fight fibromyalgia

Writing Tips
Look for your preference of journal or scrapbook that allows for creative space, have highlighers and post it tabs.
Find a private quiet place, it could be in your home or in the park, or on your deck.
Develop a routine for writing, writing at the same time and place every day or every few days
Keep your journal in a safe and secure spot and let your family know the importance of your privacy
Date every entry so that you can become aware of patterns and cycles in your life
Avoid the need for perfectionism, your journal is private and is a personal tool for self-discovery.
The more open and honest you are with yourself in your writing, the more you can notice your subconscious thought patterns, motivations and beliefs about yourself and others. When journaling about your pain, be sure to rate your pain with a number 1-10

Food Journal
You can also keep a food journal or health journal to find patterns in what you eat, what may be causing flares in your fibromyalgia and how to eat healthier. If you suffer from fibromyalgia, you know the havoc that sugar, caffeine, alcohol and fatty, fried foods can wreak on your health. Keeping track of what you eat can make you aware of eating patterns and what may be exacerbating fibromyalgia symptoms like headaches, urinary problems or constipation.

http://faithandfibromyalgia.blogspot.com/

Her Diamonds

The Purpose of MY Pain

God had spoke to me long before the doctors diagnosis about this pain and told me that there is a Purpose to the pain. Everything I take you through, I have a purpose for it, then I begin to see my many Christian sisters and brothers, ministers, pastors, prophets and so on, how they treated me, responded to me, adviced me, and God said to me, show them how Amazing my Grace is, for they take it for granted, but it is through Grace that one can even live with this, because MY grace HE said, IS sufficient.

He said to me that it rains on the Just and the UNjust, life happens to us all, when the twin towers came down on 9-11, the saved folk didn't excape because they were saved, life just happened, and 3,000+ died!

Christians started treating me like the disease, some gave their unsolicited advise, others told me what to do, what to drink, eat and wear, one of my own sisters told me to PRESS into prayer more.... so it was then, I seen the PURPOSE, because if these "friends/family" were going off on me in a way that was NOT the way Jesus would have, how were they treating people that didn't walk in the same level of faith as I, and God allowed me to walk through the corrodors of Fibro for His children to share HOPE while coping. For you see, not only was I witness to Jesus in how He handled the woman at the well, the woman with the issue of blood, the woman who had been bent over for 18 years, I WAS her. He spoke out of GRACE and MERCY to the pain. He never told them what they did wrong, that they needed to just get up and exercise, all He said, was YOUR FAITH: HAS MADE YOU WHOLE~ The struggle is for your faith.
Sometimes we are removed from those that are "like" us, yet so different from a different perspective. The yellow chick is made just like the black ones, but dared to be different, even if it meant, coming down from the crowd and walk alone, there is a purpose for it. Don't allow anyone to devaluate you because of what has happened to you. No one graduated from high school and declared to have a life of pain, no one woke up and said, let me have a back ache today and for the rest of my life, just like Job AND his wife. LIFE JUST HAPPENS!
I have removed over 1,000 friends, and replaced them with people who I have an appreciation for, those with pain, who are what the Believer is to be, NONjudgmental and indifferent, full of Love and Compassion. ~

Broken glass

Today I woke up feeling ok. Then as the morning begin to bring daylight in, the pain intensified, it is barely 7am and my hands are in so much pain. I mean it feels like broken glass, a million little pieces of broken glass in my hands from my fingertips to my wrists. I mean it feels like a 99 year old with osteoarthritis. Then as I lay back down, and curl up in the fetal position, my feet are feeling the same way. My thighs are BRUISED as if I had been beat, it feels like someone came down on my thighs with a metal board and just SLAMMED me. As I lay there, I begin to cry for God to just take me home, this is NOT living, laying in a cesspool of tears, and now it is almost 8am and I am taking pain pills to try to fight the pain.

I know my Faith is on trial and under fire. I know I am being TRIED in the fire, I know that my Redeemer lives and that there is a purpose for the Pain, a Ministry from this Madness. I know that being weakened from this pain without any notice that through Christ, I am made strong. I will confront this, I will challenge this, I will conquer this!

D Day 5/19/11

Today I went in to the pain clinic after having called one day last week because in getting "in" bed super late one night after still unable to sleep, while climbing in the bed, I silently SCREAMED in horrific pain, have you ever screamed silently? It was about 4am this morning and the pain was so intense, I didn't want to alarm the others who were sleep, so I SCREAMED within myself. The PAIN was so great, I fell on the bed, it was as if my whole leg was twisted with a human sized vice grip, well, the next morning I called the clinic to make a right now appointment, it took about 2 weeks to get seen, which was today, and the doctors FINALLY confirmed what I already feared and prepared my mind for: Fibromyalgia. They gave me the game plan, I can't even tell you what they said it would entail. The doctor made comment of treating me in 2006 with "Trigger" injections, of course I recalled it NOT! So we are back at square one for treatment, but now with a Diagnosis. Today was D Day, the Day they finally Diagnosed this, they also want to check and see if I had had a stroke due to the one sided weakness going on while he was examining me. I am so sore right now, spazzing in my back ALL day today. Spazzing in my shoulders, and collar bone area, and chest wall pain as I sit here and type. Hands feels like broken shattered pieces of glass, no strength in the wrists whatsoever. Knees, thighs, hips and buttocks in constant spasms and sharp shooting type pains. Tomorrow will hopefully be better, it is 1:58pm and I am going to try to lay down on a pad of ice.