All I Am Yearning

body screaming searing ripping burning
fire tearing through while eyes a blurring
blinding pain of body and soul
countless days of memories unknown
thoughts are scattered to the winds in tatters
mind whirling twirling where nothing else matters
soul wrenching sadness
removing me of gladness
body screaming searing ripping burning
fire tearing through while eyes a blurring
pain free days is all I am a yearning

Written By: Jamie Volner not to be used without author’s permission

Remembering Days of Old

Remembering days of old
where pain was not so bold
Taking life for granted
before pain took ahold
To move without a wince
body and mind now sitting upon a fence
Remembering days of old
each day walking with joy
only now to walk with annoy
Remembering days of old
where life was not so cold
where pain was not so bold
Remembering days of old…….

Written By: Jamie Volner copyrighted not to be used without author’s permission

The past month has been a challenge with heavy flare-ups between a very stressful event that happened in my life and the monsoon weather and high heat temps effecting my body.  I so look forward to Fall coming.  My most favorite time of the year.  My spirits lift, my mind becomes more creative and my body seems much happier with less flare-ups this time of the year.

My perfect comfort zone for weather is between 75-40 degrees.  This is when I hurt the least and am a happy camper.  Fall brings me this weather.  Even before I was saddled with my illness, Fall was by far my favorite season.   Especially around Halloween.  I am a child re-born and giddy as can be. I went to Michael’s craft store about a week ago with my husband and they had all the Fall goodies out…pumpkins, foliage, harvest scented items, cinnamon….WOW just seeing and smelling that lifted my spirits.  I can’t WAIT for fall!

I look forward to the cooler weather, light breezes, sitting out on my front porch (without melting) watching the birds and decorating.  Ohhhh I so LOVE to decorate for fall and halloween.  Fun, fun, fun FUN!  I also get into my baking mode big time and even look forward to transitioning into winter.  However a desert winter and an east coast or mid west winter are two different animals.  I hear horror stories from those with FM living under those extreme winter conditions and the pain it causes them.  That is what I go through in the extreme heat.

Well, guess I should go for now and stop rambling.  Not sure what I plan on doing today.  I think today needs to be about getting my two bathrooms cleaned and house vacuumed and then after that we’ll see how I feel.

Wishing you a pain free and happy day,

Things are going pretty well, considering you have fibromyalgia. Then out of the blue it suddenly hits – the dreaded flare. And you wonder, what could have caused this to happen?

Maybe it was the extra gardening you did on the day you were feeling so energetic. Maybe it was that awful visit from the difficult relative that had you so totally on edge. Maybe it was the caffeine in something you drank or ate. Or maybe it happened for no reason at all. When a flare hits, often all you know is that the pain dial’s turned up to ten: Suddenly fibromyalgia is ruling your world.

Whatever the underlying cause, when a fibromyalgia flare occurs, it’s best to be prepared. While the following coping techniques may not make the pain go away 100 percent, they might just make managing it a bit easier.

When a flare is upon you, experts say you need to:

Give Yourself A Break

As Murphy’s Law predicts, flares often strike at the worst possible times. But no matter what you have going on or how important it is, if you try to push through the pain, you’ll pay for it. Try to cut yourself some slack instead; ask for help from others, extend deadlines if possible, and take care of your flare first. Do all you can to set your stress level to “low” when your fibromyalgia kicks up.

Just Say NO

When a flare hits, protecting your personal boundaries becomes even more critical. No, you can’t take on an extra project at work. No, you can’t make 120 cookies for the bake sale. No, you can’t babysit the neighbor’s kids. A firm but polite refusal, minus any explanations or excuses, puts you in control of your schedule and gives you room to say “yes” to what your body needs.

Get Your Z’s

Experts at the Mayo Clinic suspect that sleep, or the lack of it, plays a key role in fibromyalgia symptoms. This makes adequate rest especially important when your fibromyalgia symptoms increase. Getting eight hours or more of rest has to be a top priority. Try to go to bed and get up at the same time each day to help reset your body’s sleep cycle. Consider adding a short nap (even ten minutes can make a big difference) to your day, if possible. One caveat: Don’t nap so much during the day that you’re unable to sleep at night.

Play Mind Games

Biofeedback, deep breathing, meditation, self-hypnosis, or even just distracting yourself with a good book or some soothing music can help take your mind off the pain and make coping with a flare more manageable, say experts at the National Fibromyalgia Association.

Pace Yourself

Mayo Clinic researchers have found that people with fibromyalgia who keep going, but at a slower pace, weather a flare better than those who put a halt to activity altogether. You need to know your limits and listen to your body. Remember, slow and steady wins the race. Same goes for exercise. Gentle stretching, a leisurely walk, or some easy yoga moves can keep you moving enough to help reduce the pain.

Medicate Proactively

Following your medication schedule as prescribed can help you get pain under control and keep it there. During a flare, it’s better to take your pain medication like clockwork – even if you feel as if the last dose is still working – rather than waiting for pain to return full force before taking the next dose. At the same time, resist the temptation to double up on meds or play pharmacist: Both over-the-counter and prescription pain medications taken at levels just slightly above the recommended dose can cause serious side effects, including liver or kidney failure. And some medications (including herbal remedies) can be dangerous when combined. If your meds aren’t cutting it, call your doctor and ask for advice or some additional treatment options.

Consider Your Alternatives

When it comes to managing a chronic condition like fibromyalgia, Western medicine may not be the only path to take, say the experts at the National Fibromyalgia Association. Acupuncture, chiropractic care, massage, biofeedback, and other therapies sometimes help bring pain relief to those who aren’t finding it through conventional means. Check out providers carefully, ask for recommendations, make sure they’re familiar with the special needs of those with fibromyalgia, and keep your primary-care doctor in the loop about what alternative approaches you’re considering.

Drink Water

Critical to all of your body’s cellular functions, water is nature’s perfect health drink. Drinking eight to ten glasses per day will keep your body well hydrated and aid your kidneys and liver in their important tasks of ridding your body of toxins. Being properly hydrated also helps alleviate fatigue and aids your body in properly processing medications. Just be sure to avoid alcohol, soda pop, caffeinated beverages, energy drinks, and artificially sweetened beverages: They won’t hydrate your body properly and may increase the intensity of a flare.

Talk About It

Coping with a chronic illness can be isolating, leading to depression, anxiety, and other problems. Reach out to others for support and encouragement when pain levels rise. Sometimes just talking about how you’re feeling with people who understand and care can help take the intensity out of a fibromyalgia flare.

Source:

• Michele Bloomquist, Coping With a Fibromyalgia Flare , EverydayHealth.com.

Explaining fibromyalgia is very difficult without being overly technical or complicated.  If you, like myself have had this condition for sometime by this point you know all about trigger points, neurotransmitters, stages of sleep and patterns, myofascial syndrome, SSRI’s , and so on and so on.  We forget how complex this knowledge is to people that have no understanding, that is, until you see their “deer caught in headlight look” and their eyes just glaze right on over shortly into your conversation.  At that point, I am like, ok then and change the subject with a blow off of “I know it’s crazy huh, hey, how are the kids doing?”

As a general rule, anyone listening to what we are saying or reading something you sent them via email are to say the least a wee bit skeptical and some really just don’t want to take the time to understand something that is so complicated and confusing such as this illness.

I found this article that I hope will shed some light on the subject on helping your family and friends have a better understanding of what goes on with you that won’t glaze their eyes over.

What’s Going On?  A Simple Explanation of Fibromyalgia.  Making Sense of a Complex Disorder, for Those Who Don’t Have It

By Adrienne Dellwo, About.com Guide  Updated September 22, 2009

Fibromyalgia is a complex condition that’s difficult to understand, especially if you don’t have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.

If you’re trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don’t show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it’s a very real physical condition.

Digging through that scientific research doesn’t help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren’t exactly easy to grasp.

The goal of this article is to help you understand and relate to what’s going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you’ll find relevant medical terms with links to definitions. They’ll be helpful if you want to go beyond a basic understanding, but you don’t need to understand the terms to get through this article.

Understanding the Pain of Fibromyalgia

Imagine you’re planning a party and expecting about 20 guests. Three or four friends told you they’d come early to help you out. But they don’t show, and instead of 20 guests, you get 100. You’re overwhelmed.

That’s what’s happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.

When those pain signals reach the brain, they’re processed by something called serotonin. People with fibromyalgia, however, don’t have enough serotonin (the friends who didn’t show up to help), leaving the brain overwhelmed.

This is why people with fibromyalgia have pain in tissues that show no sign of damage. It’s not imagined pain; it’s misinterpreted sensation that the brain turns into very real pain.

Other substances in the patient’s brain amplify signals — essentially, “turning up the volume” of everything. That can include light, noise and odor on top of pain, and it can overload the brain. This can lead to confusion, fear, anxiety and panic attacks.

Understanding the Ups & Downs of Fibromyalgia

Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It’s understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.

Look at it this way: Everyone’s hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.

Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they’re not. The more things that are out of the zone, the worse they’ll feel.

Understanding Stress & Fibromyalgia

Some people think FM patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.

The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what’s happening.

People with fibromyalgia don’t have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.

Also, when we talk about “stress” we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.

Understanding the Fatigue of Fibromyalgia

Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.

Imagine being exhausted like that all day while you’re trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night’s sleep would take that feeling away.

With fibromyalgia, though, comes sleep disorders that make a good night’s sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:

• Insomnia (difficulty getting to sleep or staying asleep)
• Inability to reach or stay in a deep sleep
• Sleep apnea (breathing disturbances that can wake the person repeatedly)
• Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)
• Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)

Fibromyalgia In a Nutshell

A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they’re tied to very real physical causes.

Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

• It’s NOT psychological “burn out” or depression.
• It’s NOT laziness.
• It’s NOT whining or malingering.
• It IS the result of widespread dysfunction in the body and the brain that’s hard to understand, difficult to treat, and, so far, impossible to cure.

The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier.

Making a serious decision like moving into a new home or changing careers is stressful – even if you don’t have a chronic illness. But for those with fibromyalgia, dealing with chronic pain and fatigue can turn a common milestone into an insurmountable barrier. It’s hard to avoid such looming questions as: Will I make the right choice? How do I move forward without endangering my health?

Sylvia Lippmann, certified life coach and author of Don’t Let Chronic Illness Stand in Your Way: The Coach Approach to Reaching Your Full Potential, offers useful strategies that can help make a major change both easier to contemplate and less intimidating to begin.

Think Before You Act

Consider all aspects of a decision and what the choices are before you proceed. To get to the most workable solution:

• Consider your options. Lippmann calls this the ‘what if I do/what if I don’t’ technique. Sit quietly and visualize what your life would be like if you made one choice instead of another. Try your decision on for size and mentally live in that perspective. Then visualize what your life would be like if you didn’t make that choice.
• Do a values reality check. Another way to ease the decision-making process is to identify what your philosophy of life and core values are and consider how your options support them. These are the bright, bold words that speak volumes about you: Beauty. Creativity. Nature. Adventure. Challenge. Come up with a list of some of your core values, and ask yourself if your decision takes you closer or further away from these ideals. Use them as your guide.
• Weigh the pros and cons. Make a list of the advantages and disadvantages of a particular course of action. It may sound simple but it really does work. Seeing these things written down can be very powerful, and may help you to address your fears. “A big part of that list is the impact each action might have on your health and your energy levels,” says Lippmann. “Energy is huge with fibromyalgia.” For each item, ask yourself how will this affect my energy reserves? Will my decision fuel or drain me?

Move Ahead as Planned

Once you have a general overview, you’ll need a strategy that addresses how you’ll manage your health while carrying out your plan of action. It will be helpful at this stage to

• Know your needs. Start by squashing those self-defeating beliefs such as “If I rest, people are going to think I’m weak and just giving into my illness.” With fibromyalgia, self-care, both physical and emotional, is key – and there’s no reason to feel guilty about taking breaks when you need them.
• Make a plan. Your best bet is to set up a daily routine and fit it into your day. Make a list of things you need to do every morning, afternoon, and evening to manage your illness effectively. Schedule in your naps, exercise, stretching – whatever you know you need to do to feel well. With a plan in hand, you’ll avoid wondering and worrying when (or if) you’ll have time to take care of yourself when the situation changes and things gets hectic.
• Be realistic. It’s a good idea to come to terms with the fact that there will definitely be things you won’t be able to do. Leave enough time so that accommodations can be made. Know your boundaries and don’t be afraid to ask friends and family for help.

Go Forward Fearlessly

Once you’ve made your decision, it helps to be positive as you move ahead. And you’ll also need to be sensible about your health and realistic about the limits of your endurance so that the process will go as smoothly as possible. It will help if you:

• Recognize red flags. It’s important to build up trust and confidence in your ability to take care of yourself. Recognizing your body’s signals that you’re pushing yourself too far is an integral part of managing your fibromyalgia. Signals can range from greater fatigue to upper body pain to other sensations that you know mean trouble.
• Do regular health checks. To avoid paying dearly – healthwise – for overdoing it, Lippmann suggests making a habit of checking in with yourself mentally and physically at regular intervals throughout the day. Rate your level of pain and fatigue on a 1 to 5 scale. If either one is above a 3, take a break or stop until the next day. It’s all about pacing yourself and avoiding the push-crash cycle.
• Know your goals are possible. Most important, says Lippman, is to remember that the way you approach and accomplish tasks may have to change when you have fibromyalgia, but you’ll still be able to fulfill your life’s purpose. Her inspirational message: There’s always another way.

Source:

Strategies for Making Decisions and Moving Ahead When You Have Fibromyalgia

One of mine would be my husband, Rick Volner Sr.  My husband and I met believe it or not online and it turned out (ironically) we worked for the same company and never knew it or ever crossed each others path.  After chatting our first day online both of us had to leave for work and that was when we found out, we worked at the same place.  We starting dating September 3rd of 2000.  Please do not credit me with remembering the exact day because it is my husband who has a mind trap for dates .  In fact as I am writing this I had to ask him and he just blurted it out without a thought!

When we first met I had my “doubts” simply because he was 15 years older than myself.  I tried terribly to “talk myself” out of dating him but he made that very difficult.  He is kind, gentle, funny, smart, faithful, goofy, loving, loyal, compassionate and has a LOT of patience.  That last one is a huge requirement to be with me hahaha.

Rick was ready in December of 2000 to marry me.  I was like “Not so Much” and “Back the Truck UP”.  You see, I had just recently come out of a very bad marriage already and sure wasn’t going to get married less than 3 months of knowing him.  I had never been “lucky in love” and ended up with some, let’s just say “not so nice” men and was very gun shy at this point.

Any how we married October 11th, 2001 and things between us were good.  Oh, don’t get me wrong, we’ve had our issues like any couple.  We are not perfect and yet we always managed to get through whatever life threw at us.  Like I said, him being the most patient person I ever met helped because I am a handful to say the least

In 2003 my health started to decline and by 2005 I could no longer work.  This put a huge financial strain on us for sure.  I have watched, talked to and heard of relationships falling apart and dissolving when one spouse becomes disabled or is very ill.  I was terrified this would happen to us.  Fear set in along with my illness that he would get very tired of it all and walk out that door.  If he had of, I wouldn’t of blamed him.  It’s tough.

Never has he not been by my side through numerous surgeries, countless ER visits and hours of waiting, taking me to doctor appointments, being the only one working, running here and there, cleaning house, laundry, dishes, yard work and on and on.  He has NEVER made me feel guilty about being sick or said a harsh word to me.

My husband loves me through and through and has taken his vows very serious and boy has he proven time and time again the part of  “in sickness and in health”.   Many women say that THEY are the luckiest girl in the world and I’ll let them feel that way but in my eyes I truly am the luckiest.  I told my mother in law once “Thank you for raising such a wonderful man” and I say when he was born they broke the mold because I’ve never met a man such as Rick.

Honey, if you should read this…there just aren’t enough words to express how I feel about you and love you.  I am not sure what life would be like without you but I NEVER want to find out.  I know I’ve pushed your buttons and done some really stupid things and yet, you have always been the one person I really COULD count on and forgive my faults.  You’ve loved me as no other person or man in my life has and always it is true, unconditional love.  You are not just my spouse you are my true, best friend.

Love you dearly for as long as we both shall live,

Jamie

Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made.

8 Primary Signs/Symptoms of CFS

• Postexertional Malaise – (Hang in there I’ll explain)

Okay, so first let’s break the word down.  Post means “after”.  Exertional means exhaustion brought on by physical exertion.  Malaise means your body has a vague feeling of discomfort and basically feels like you are coming down with a cold or flu.  So, let’s put this word all together.

Postexertional Malaise is a period of intense exhaustion and lasts for more than 24 hours following physical exertion. This symptom is a hallmark of chronic fatigue syndrome.  The fatigue is very intense and will leave you very weakened and tired.  There is no option but to rest, you will want to do nothing else and your body will demand it.

• Muscle Pain – pain in all your muscles throughout the body.  You will also hear muscle pain referred to as Myofascial Pain Syndrome. This is a chronic form of muscle pain. The pain of myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points can be painful when touched. And the pain can spread throughout the affected muscle.

• Memory Loss and Concentration Loss

• Insomnia

• Pain In Joints

• Sore Throat

• Headaches

• Tender Lymphnodes in Neck and Armpits

In addition to the 8 primary signs and symptoms  here are other reported issues from CFS patients (these symptoms vary from person to person)

• abdominal pain
• alcohol intolerance
• bloating
• chest pain
• chronic cough
• diarrhea
• dizziness
• dry eyes or mouth
• earaches
• irregular heartbeat
• jaw pain
• morning stiffness
• nausea
• night sweaters
• depression, irritability, anxiety, panic attacks
• shortness of breath
• skin sensations
• tingling sensations
• weight loss

CFS is marked by extreme fatigue that has lasted at least six months; is not the result of ongoing effort; is not substantially relieved by rest; and causes a substantial reduction in daily activities. 

As always, please consult your primary care physician should you feel you are experiencing any of these symptoms.