My 31 Year Journey With Fibromyalgia

My 31 Year Journey With Fibromyalgia

How It All Started In The Fall of 1984

A massive pressure was bearing down on my throbbing back, trying to force me toward the sidewalk, creating an overwhelming urge to drop to my knees and crawl to the pay phone. Using sheer willpower to call on every particle in my body and with urgent prayer, I forced myself to walk three car lengths to the phone booth so I could make an important phone call.

With every excruciating step, it felt as if my feet were filled with red-hot marbles and each bone and joint was rolling over these searing spheres of boiling pain, all the while my feet felt like they were being gnawed on by ravenous wolves. My calves felt so tight, that the next step would snap the muscle.

In spite of the chaotic numbing pain, I made my phone call. Looking at my 1984 blue Chevy Chevette, I wondered how I would get back to it. Would angels come down and bear me up? Sweat was rolling off my forehead and my white cotton shirt was getting more wet by each passing heart beat. I loosened my tie as a wave of nausea came over me.

Stepping forward, I felt a power pushing me slowly ahead, against a conflicting force driving me to my knees, and with every bone crushing step onward, I was one piercing pain closer to getting off my feet and in my car.

At that time, I was working as a salesman at a local Color Tile. This meant standing on my feet, on a concrete floor, eight to ten hours a day. The only respite would be an occasional sales call where I could sit in my car for a time as I drove to my appointment.

Before the onslaught of pain hit, I was excelling at my job and was consistently the store’s top salesman and occasionally the regions number one salesman. I was considering a career in sales. Life was going great. I had high hopes for my future which included going to college, getting married, and having children. I looked forward to skiing in the winter and fishing in the summer. I wanted a healthy active life with a family and a good career.

Then along came this episode of painful suffering. As time went by, the pain continuously grew worse. Nothing I could do, including aspirin and Tylenol would help. By now the pain was wearing me out. I was walking hunched over with a shuffle.

I was no stranger to pain. In the past I had gone through five brain concussions, a few broken bones, one head injury that created a very short spell of amnesia and cracked my skull. I had been through at least six surgeries and countless stitches. Every time I fully recovered. I expected that whatever this pain was, it would go away. It always did, or so I thought.

As four pain filled months rolled slowly by, the pain would ebb and flow. With time rolling on, my pain-free days were less frequent and my pain filled days occurred more often. I could see I wasn’t getting better and the pain was taking a heavy toll on my life. All I was doing was sleeping and working, working and sleeping, day in and day out, week in and week out. Time moved slowly and painfully forward with no light at the end of the tunnel.

Seeking Medical Attention – 1985

After several agonizing pain filled months I finally decided to seek medical attention. Since my feet were the primary source of pain, my first stop on the pain train was to see a podiatrist. He took a mold of my feet and sent me a pair of inserts for my shoes. This would “fix me up and take away the pain” he claimed. I tried the inserts as directed, they didn’t help and the pain worsened.

The next whistle stop, on the pain train, was going to a general practice doctor. He did nothing but refer me to a Rheumatologist. Two doctors down and still no medicine for the crippling pain.

The third stop was to the Rheumatologist who actually seemed interested. He took blood samples and x-rays and put me on Motrin while I waited for results. (This was so long ago that Motrin was only available by prescription.)

On my follow up visit with the Rheumatologist, he told me I had Ankylosing Spondylitis (A.S.). He said this was a type of arthritis affecting young people. My symptoms paralleled A.S. almost perfectly. Oddly, I was excited to have arthritis. Now I had a name for the pain. I could be treated for it, and by the sound of it, live a reasonable normal life. He put me on Indocin, a strong anti-inflammatory.

The Indocin started to reduce the swelling in my feet. Eventually the swelling stopped, and my feet looked normal. For the first time, in a long time, I didn’t feel like I would die when I stood on my feet. My feet were still in pain but far from the bone splitting ache of before.

There was a trade off. While I had less pain, I was now drowsy much of the time. That was a small price to pay to relieve the agony.

I could stand, walk and move about much easier, and sometimes pain free. I did have to give up my passion for running. I had enjoyed running twenty-five to thirty miles a week.

It was during this partial respite from the throes of agony I feel asleep while driving that old blue Chevy Chevette. I was not wearing a seat belt and was thrown from the car through the wind shield about fifty feet. I had serious head injury known now as Traumatic Brain Injury, TBI. I also suffered amnesia from that event. I broke my shin. It was a multiple compound fracture and there was about five of six chunks of bone between the places were the bones protruded out of my skin. The small bone behind the shine was broken just above the ankle. My every single rib was severely bruised. The only good thing about this accident was the pain meds made not only my injuries feel all right but took away the pain in my feet completely, but that only lasted about a month.

short storyA month or two after the accident I was changed to a new anti inflammatory called Naprosyn.

Living Life 1986 – 2004

I started college in the fall of 1985. I was married in 1986. On the day of our wedding I got to stop wearing the brace for my injured left leg. About a year or two later I started to get headaches, light headed and nausea with funny sensations around my eyes, scalp, and various places on my face. Over time, I noticed when I didn’t wear cologne or hair gel I was fine. No one knew about chemical sensitivity back then.

With some limitations, I was well into the life I had hoped for. No more skiing or rough housing with the guys and no more winter time activities as the cold greatly affected my pain levels and the ski boots hurt my feet. Thankfully I was still able to go fishing. I was able to deal with the few life changes I had to make, at least for that time period.

Every so often, over the course of the next seventeen years, I would have throbbing pelvic and lower back pain when I stood too long or got too little sleep. I would also get a painful burning sensation in my spine and back. I would have occasional flare ups with foot pain. This was normal for an A.S. patient according to my Rheumatologist. I also noticed in the mid 1990’s that whenever I started a new exercise routine I would get sick.

Life was going on and my wife, Colette and I had been blessed with three daughters. I had a great job and we were in our third house working our way up the mortgage ladder. As December 2003 came around, our quite, happy life came crashing down around us. As a result of severe abdominal pain, my wife was given a colonoscopy, the doctor found a tumor blocking my wife’s colon. She was diagnosed with colon cancer. Because of the blockage, emergency surgery was the only option. The tumor and eighteen inches of colon were removed.

As life came to a standstill and everything was put on hold, me, my wife, and my children’s lives had been forced to travel down a challenging road of despair and heartache we did not choose. After a few weeks she started chemotherapy that would last for most of the year. That was a prelude of things to come.

Welcome Back Pain 2004

When we should have been celebrating Colette’s victory over colon cancer, we were dealing with my health declining rapidly around September 2004.

fibro_is_realI started going through a resurgence of insidious pain. Every few days or weeks the pain grew worse, and with each flare up the pain would spread. Not only did my feet hurt, but so did my legs, pelvis, spine, and hips. Each vertebra felt like a hot coal sending burning sensations up and down my spine from the top of my neck to the end of my tail bone. This pain was a thousand-times worse than the bone crushing pain of 1984.

The piercing wrangling pain in my neck seemed to want to strangle me. It sometimes hurt to swallow. With every move my neck made, I could feel a dull, piercing shock explode up into my brain. Each neck muscle would spasm with the smallest movement.

The small of my back felt like the slightest wrong move would snap my body in half. My hips felt like sandpaper grinding in the socket, and I felt like I had a bad flu virus throughout my entire body. Every muscle in my body ached while my mind swirled in fog.

After simply standing for more than a few minutes, my legs would give out on me. My knees buckled. My shoulders were heavy, very tight, and aching. The pain was so severe I lost some range of motion. I couldn’t even tie my neck ties. I could barely get a shirt pulled over my head.

At first I tried to have a sense of humor saying that everything hurt except my elbows. After saying that a few times, I took a mental inventory of my body from the tip of my toes to the top of my head. That joke was actually true. My jaw hurt, sometimes swallowing took conscious effort. Every part of my body hurt except my elbows.

After years of severe chronic pain I asked the common question, “why me?” That was a constant question coursing through my mind. “Why me, why all the pain?” All this agony didn’t just occur one morning out of nowhere, but almost. Within about six weeks I went from typical arthritis pain to throes of agony, literally taking my breath away. My sternum and ribs hurt. The ER said no heart attack. I also found out I had acid reflux. With the reflux treated, my chest and sternum only hurt when I breathed.

As I walked, the muscles in my lower back would catch, making my body jerk with every step I took. My spine burned and cramped whether I was moving or not. The muscle spasms in my neck felt like my head was being pulled back, yet my head hung forward. My body was full of contradicting pains and sensations. I was angry and confused, why was I having all this pain and suffering?

I had tremors in my forearms all the way to my hands. It was noticeable when holding a spoon or fork. My Dad had Parkinson’s disease, and I knew the symptoms well. I was afraid I had it with the difficulty swallowing, the tremors, and the stiffness while walking.

Looking for Answers Again 2005

There was no logical rhyme or reason to the pain I felt. Confusing, chaotic and contradicting soreness coursed through my body. Even my fingers were numbed from the nerve pressure. Sometimes part of my back, chest, or neck would go numb from the spasms.

I felt like I had the flu, the worst possible flu you could imagine with the typical body aches amplified by infinity. No, this is not an exaggeration. I went to my family doctor several times for flu like symptoms. A couple of times they did blood work to see if it was a virus because the symptoms wouldn’t let up.

My wrists hurt so badly that several finger tips went numb. They tested me for carpal tunnel syndrome. I was fine in that area. My knees were x-rayed and I received a CT scan due to the bone on bone sensations.

I started to develop insomnia. When I was able to drift off, the pain in my back would wake me up. My lack of sleep became worse. I was afraid to wake up because I would hurt so badly in the morning. It was more than morning stiffness, it was back breaking pain.

My doctor sent me to a Rheumatologist. After six or seven weeks of writhing agony the day of my Rheumatology appointment arrived. My wife and I got there early and it was a good thing. From the parking terrace and through the long hallway in the medical office it was a very long walk. I was breathing heavy and sweat poured out of me like Niagra Falls. I thought I would die. Because it hurt my neck to hold my head up straight, my wife held my arm and guided me.

fibro_mans_perspectiveThe doctor could see I was in bad shape. He asked a bunch of questions and then questioned my diagnosis of A.S. and sent me to the first floor for x-rays and blood tests. In a couple of hours I was back in his office. As he came walking into the room he said “you do not have Ankylosing Spondylitis.”

“What?!” I said with major disbelief. “How is that possible?”

He said, “that is good news. Not having Ankylosing Spondylitis is good for you. If you had it, you would be miserable for the rest of your life with your spine bent forward and fused together.” Many A.S. patients end up with their spine naturally fused in a bent over position not being able to lift their neck up.

“After twenty years of A.S. you should have had a well-defined bamboo spine.” He went on to explain that I did not have the famous ‘bamboo spine’ that advanced A.S. was also known for.

I was in shock with this revelation, having spent the last twenty years with what I thought A.S.

He examined me further by poking and prodding me in a myriad of places all over my body. It felt like a ball-peen hammer hitting me everywhere he pushed. He was testing the eighteen trigger points of Fibromyalgia. The sensations ranged from searing and burning pain, electrical shooting pain to bone cracking pain, from a throbbing pain to a dull, drop to your knee’s pain. A great many of these places he poked caused me to involuntarily flinch or moan.

He asked some question’s and did some diagnostic testing that I don’t remember. He then said “you have Fibromyalgia.” At that point all I knew about Fibromyalgia (fibro) was what I had heard from a pediatrician. He said it was like having arthritis in your muscles all over your body.

The Rheumatologist said the pain would ebb and flow between major flare ups and low grade pain.

“What do I do for it? What medicine do I take?” I asked.

“I hope you like the water because you’ll need to swim every day,” he responded.

By now he was opening the exam room door giving us an obvious hint that we were done.

I said, “that’s all you can do? What about all my pain? You’ve got to do something for that?!” His response reflected what they knew about Fibromyalgia at the time. It was real, it was painful and there’s no recommended course of treatment.

“Do I need to make a follow up appointment?”

“No, not really,” He said. “I could see you in a year or so but there’s not really anything I can do.”

I was so enraged I didn’t thank him or say anything more to him. I stormed out of his office in a hunched old man shuffle.

My wife caught up to me in about four steps and held my arm, making sure I didn’t walk into walls or bump myself on corners. Pressure was welling up in my face but I didn’t give it any attention due to the fact my mind was racing a million miles an hour going in a thousand different directions and thinking of one thing, “what now?”

I got in the car and realized that for the last couple decades I had Fibromyalgia and not A.S. But why now, after all these years, why was I in so much pain? Nothing had changed but the diagnosis. I was confused. Nothing made sense. I was no closer to a solution. Every moment of that past year and a half of excruciating pain came raging out of my eyes with salty water. Indiscernible sounds came out of my mouth.

By now my head was on fire with pain and anxiety. I was again floundering in an endless sea of surreal existence with the waves of pain pounding on me with every beat of my heart.

Coping With the Unknowable 2006

I was on my own trying to cope with the unknowable. How do you cope with the unknowable? I wasn’t able to cope with the pain in 1985 but I did cope with A.S. in 1986. Now my arthritis was taken from me and I was cast into a pit of fibromyalgia that so little was known about. Thankfully, I had a supportive wife and family. They did all they could. They couldn’t reach in and take out my pain. But in all other aspects, the loving support of my wife and kids and a few close friends helped a lot, mentally and emotionally.

My life was spent in my recliner with a heating pad on my back. I couldn’t lie in bed because it hurt too badly. My insomnia grew worse yet again. I would get to bed at about seven or eight a.m. and sleep until nine or ten a.m.. I couldn’t run my business, at least I no longer had employees that would need to be fired. I tried to do research on fibromyalgia but found very little posted about it.

a day in the life of fibromyalgia

a day in the life of fibromyalgia

Thankfully I was able to nap during the day. Throughout the day I would doze off for short bits of sleep only to be awakened by shooting pain in my spine. I would constantly adjust myself to ease the pressure and pain. I would pray a hundred times a day, or so it seemed, crying out for relief. My mind was numb, full of confusion, pain and disbelief.

I heard about a pain clinic from a friend. I quickly made an appointment with them. We spent more time filling out forms than we did in the exam room. The doctor at the clinic was rude and calloused and said there is nothing that I can do for you. I was indescribably mad at him about his lack of concern and all the time I had wasted. I already felt doomed to suffer endless pain. This last event pushed me deeper into that darkening pit of despair.

Profound torturous pain followed me for days upon days, weeks upon weeks, months upon months. I was bound to my recliner strapped down my paralyzing pain. There was no end to the agonizing debilitating misery. At this point there was no ebb and flow, there was no day off from suffering. This consumed my life day in and day out. Every minute of every hour of every day, pain, mind-numbing pain!

My family brought my meals to me. I ate in my recliner. My world was bleak. I lived my world through TV and DVD’s. I was not able to read or even use my computer much because of the fibro fog filling my brain. I was rendered powerless to my condition. I spent a great deal of my life in a bathrobe. When I did get dressed all, I could wear were my sweats. Vioxx was off the market and I had no anti inflammatory that would help.

By now my illness had taken its toll on my family. Everyone was on edge around me for fear of my reaction. Sometimes, for no-good reason I would yell or lash out. The fibro-beast dug deep down into the core of my body. It seemed as though that fibro beast traveled to the center of my bones wrapping its way around my muscles pulling tight and letting go, over and over again.

The pain would make me sick to my stomach and I often took shallow breaths causing me to be light headed until I could somehow force my self to breathe deep.

Between daytime pain, fatigue, and nighttime pain coupled with insomnia, my life was somber. While I never considered suicide, as so many do in similar positions, I did envy the terminally ill, at least with death they had a light at the end of the tunnel.

Sometimes my prayers seem to fall on deaf ears. Other times I felt at peace. I knew there was some point to all of this. My faith in God gave me long term perspective throughout the illness. I knew it wouldn’t always be this way.

Somehow, during all this time, it didn’t register with my best friend’s wife to tell me about the pain clinic she was going to. Of course, she was in her own world of chronic pain. Thankfully, one day she mentioned it. I got the number for Dr. George and called his office immediately. I was scheduled for a new patient appointment at their next opening.

As I was anxiously biding my time waiting to see Dr. George, my wife was having a sleep study done. The sleep lab was located in a neurologist office. While waiting to be brought back to her bed, she read a pamphlet about MS. Later she told me about it. It seemed like many of my symptoms resembled MS according to the pamphlet. We called that neurologist’s office for an appointment.

A week and a half later Colette was filling out a myriad of forms as I tried everything I could to get comfortable in Dr. George’s office. Finally we got in to see the good doctor. I was amazed at his perspective and contagious positive attitude. He was like a kid in a candy store. He was so excited to see me and to get to the bottom of my pain. He was more passionate about his job than I have ever seen in anyone, anywhere in my life. I was a crime novel and he was the lead investigator.

He really wanted to help. His interest in helping me was as obvious as the sweat on his brow. One of the first things he said to me was, “Fibromyalgia is a real and valid diagnosis, we don’t know much about treating it but we can treat the symptoms.”

At hearing this declaration, my heart truly swelled, “Hallelujah, Hallelujah! Thank God, Hallelujah!” I know that sounds dramatic, but that’s how it felt to hear those words.

fibro_is_realHe gave me a very detailed exam. I gave a urine sample and a lot of blood. As Dr. George was examining me, he was explaining how pain was a manifestation of sensory nerves going into the spine and up to the brain. He was talking nonstop, educating me about pain. I remember thinking, “why is he so excited about all this?” I quickly learned he was passionate about helping people feel better. I thought, “how ironic, I finally found a doctor who actually cares about my health and welfare.”

He confirmed my diagnosis of Fibromyalgia and thought I might be having some problems with some discs in my upper and lower back and maybe some arthritis as well. “We would need x-rays,” he said. It was like he could read my mind, or perhaps my body language. “Don’t worry, we will get your pain under control while we do the tests and x-rays.” Look out, another out break of “Hallelujah!”

The first time in a long time I was actually happy. Just hearing his remarks made me feel better, for a minute at least. He started writing furiously on a blank sheet of paper. I was relieved to hear the words, muscle relaxers, pain pills and other types of medicine. Apparently, I gave him a look of befuddlement. He said, “don’t worry, I am writing all these instructions down with the time intervals.” His instructions in diagram form took a full sheet of paper. He went over it with me then turned to Colette and went over it with her. “We’re throwing everything we have at you for a few days to get this pain under control. Some of these medicines will take time to work. Don’t worry. I know what I’m doing.”

That was music to my weary and painful ears. Yes, even my ears hurt.

Because of the pain improvement, I began to notice other symptoms of Fibromyalgia that had been buried underneath all that pain, but due to the intensity of the all consuming pain, I hadn’t noticed all of them. Dr. George did some x-rays and CT scans. He discovered some bulging discs and a few degenerative discs and arthritis in the facet joints of my spine.

He explained how the pain from disc and arthritis issues could normally be treated with Aleve and muscle relaxers. But not with fibro patients, simple ordinary aches and pains feel much worse. Fibro patients are far more sensitive to pain signals than the average healthy person. A paper cut would feel like getting sliced with a sharp knife. When my wife would gently nudge me, it could feel like getting stung by a sharp hot poker.

Pile It On – I Can Take It?

Several weeks had past from my initial appointment with Dr. George and now I was able to visit the Neurologist. A typical neurological exam was done, followed by blood work, x-rays and CT scans. Those were followed up with an MRI which found several white matter lesions on my brain. Those results made the doctor think about the possibility of MS. To confirm MS, I would need a spinal tap.

After all the results were in, the neurologist said, “I don’t think you have MS. But we’ll want to repeat the MRI and spinal tap in six months and then in a year to follow up. I’m sending you to my partner to look for other health issues.”

Her partner was a Naturopathic Doctor (ND). This ND was fantastic. She took the most exhaustive medical history of my life. She did more blood tests for specific diseases like Lyme’s disease, Epstein Barr virus (EBV) and some viruses and illnesses.

Long story short, I was diagnosed with Epstein Barr Virus (EBV), Cytomegalovirus (CMV), Chronic Fatigue, white matter lesions on the brain, severe insomnia, extremely low testosterone and some minor problems with my thyroid and pituitary glands. She treated me with both traditional pharmaceuticals and nutritional supplements.

The viruses and brain lesions seemed to be unrelated to Fibromyalgia, the just added more poor health to my plight. In time those viruses went into remission. Many of the emotions that fibro patients deal with were now mine to tackle. The truth is, the fight against those feelings is as ongoing as is the illness itself.

By now we are nearing the end of 2005. Dr. George also put me on a Tens machine. A Tens machine is an electronic simulator sending electricity to your muscles through four leads that stick to your skin over painful areas. The idea being that the electricity disrupts the nerve signals going to your brain. The brain doesn’t recognize these nerve signals which trick the brain into thinking there is less pain.

I was now at a point where I could sometimes manage my pain and some of the other symptoms. Having the ability to fight back against Fibro after all this time was wonderful. I had pain every day but there were times when the pain was actually tolerable.

Finally I could leave the house to do things other than going to doctors appointments. Now, on occasion, I could sometimes go to church, the movies or even go out to eat if I was having a good day.

Living With Fibromyalgia

Most of the time I was still “bedridden.” Which for me, meant mostly sitting in my recliner. I knew I had Fibromyalgia for almost two years. Because of the overwhelming, life altering pain since October 2004 I had not been able to work. I couldn’t read very much because of trouble concentrating. I thought the concentration problems were from the severe pain and some of it was. But there is another symptom of Fibromyalgia called fibro fog that affects cognition, memory and concentration.

fibromyalgia depressionFor the better part of those two years, I would try everything I could do to get comfortable. Warm blankets, hot showers when I could, heating pads, prayer, prayer and more prayer. Finally my prayers were being answered.

With all the diagnosing done and treatments started, I went from feeling like I was in a stretcher, then improving to a wheelchair, and on good days a walker.

In spite of some good improvement, I still couldn’t work for more than a couple of hours, even on the computer. On a good day I might get two or three hours of work done over the course of ten or eleven hours. I was happy to be sitting a good part of the day rather than lying down for twenty-four hours a day.

Now I could concentrate on more than just pain. I started feeling gratitude for my improving health; yet, at the same time I found myself going through the emotions of worthlessness and isolation. When I was in the throes of pain, I felt “isolated and worthless” but because the pain was so severe I didn’t care. The unbearable pain was all I could think about. Now that the pain was somewhat manageable, I was able to think about an uncertain future with a chronic illness that no one knew anything about.

During this time I was being rudely introduced to many unknown and unwanted emotions that came with chronic pain and associated symptoms of Fibromyalgia. Despair and melancholy were unwelcome visitors to my mind as were confusion and loneliness. I was going through a form of grief. I mourned the loss of my past “normal life” while I was trying to adjust to a new life style of chronic pain, insomnia, chronic fatigue, fibro fog and other fibro symptoms.

I finally came to grips that the fight for my life was now a draw. I didn’t win, but I hadn’t lost. I couldn’t recover from it, there was no healing, but I could learn to manage it with the help of proper medication. Now the fight is to manage the illness rather than beat it.

For the last few years I started recognizing that many people around me, some extended family, some friends, and a lot of people in my social sphere started to question my illness and wondered if I was a hypochondriac. How can one person have so much pain and so many illnesses at one time? “You don’t look sick. You must be faking it.”

Even most of my own siblings thought I was making it all up to get out of helping with my sick mother. Other people would imply that I should be better by now.

While those unkind and rude responses did make me feel bad, I was learning on the Internet that there was this concept of “invisible illnesses.” People looked healthy and fine but inside they were racked with pain or illness that didn’t show on the outside. Still, for people to think I am making it up and that Fibromyalgia wasn’t a legitimate medical diagnosis made me angry and conflicted.

Moving On 2007

In spite of all that I was going through, I found that life goes on. The biggest challenge was when my wife was diagnosed with Breast Cancer.

The next few weeks were filled with consultations, exams, labs, scans and a funeral. I consulted with my pain doctor and told him what was going on. He increased the dosage of my pain meds. He was genuinely concerned for my wife and me. He explained how stress can cause flare ups. He went so far as to say that I needed to pace myself, not to ignore myself. I would pay a stiff price if I overdid it.

Finally, after a few hectic weeks, Colette had her operation which lasted about eleven hours. I found myself doing things I hadn’t done in years. I went through long hours at the hospital only to repeat the process the next day. I took my meds very regularly. That helped a little.

My wife was in the hospital for more than a week. I visited her every day for most of the day. Several days later my aching back woke me up like an alarm clock but that day was a very different day. I could barely get out of bed and when I did I could barely make it to my recliner. I could hardly move and my pain meds didn’t seem to help at all.

I had crashed and now I was burning. It was just like what the pain doctor had warned me about. Emotionally it was very difficult, but I had to call my wife at the hospital and explain my situation and told her I couldn’t get out of my recliner. I couldn’t go to the hospital to be with her. I had no energy. I felt like a failure because I couldn’t “man up” to be at my wife’s bedside after all she had done for me. There was no will power left.

Here she was fighting for her life and recovering from an eleven-hour surgery. I was forced by some unseen and overwhelming power to be bed fast. Bless her sweet heart, she was understanding and luckily she had one of her best friends with her for the next several days. She told me to take a few days off until I felt better.

Colette went through chemotherapy and radiation therapy. Among the many side effects of chemotherapy was exquisite pain from the core of her bones.

She would desperately cry out to rub her feet or legs and as soon as I gently touched her shin or foot she would cry out “stop!!!” It hurt her skin for me to even touch her. She was out of her mind with pain. Being a fibro patient with chronic pain, I had extreme empathy for her and all the pain she was going through. Her pain stressed me out and that made my pain worse. But I didn’t care. It was all about her with colon cancer, it was all about me with my pain and fibro, and now it was all about her with breast cancer.

I learned that stress can cause pain or other health issues. Fibro patients are hypersensitive to all types of pain. This means that stressful situations can reek havoc for fibro patients.

As people came by to help or check on Colette, some would make two-edged comments. On the one hand they seemed to feel sorry for me and on the other hand their comments carried an under tone of judgment and disbelief of Fibromyalgia. I should be doing more to help my wife.

Colette got all the help and support she needed while I got awkward and judgmental comments. She beat breast cancer, twice a cancer victim, twice a cancer victor.

One time, an old friend, or so I thought, came by to visit me. I explained what Fibromyalgia was with the chronic pain and other symptoms. He responded by saying “I know what you’re talking about. Every morning when I get up my back hurts, I got to work anyway and it all works out.”

These well meaning “friends” thought they knew what they were talking about. I don’t think any of them intentionally tried to be rude. They didn’t understand what they couldn’t see. Some well meaning but insensitive people said “I have a sore back all the time.”

Moving Onward

I got a letter in the mail that told me Dr. George had sold his practice and I would now be a patient of another pain clinic. Luckily I had an appointment with Dr. George’s clinic a few days later. While I was waiting to see the PAC in his office, I saw Dr. George walk through the waiting room. He sat down opposite of me and we chatted for a while. I asked about the selling of his practice. He had to sell the practice because he had advanced prostate cancer and the prognosis was poor. He was going to get involved with experimental therapy and couldn’t run his practice any longer. I was able to give him my sympathies and thanks for turning my life around with his aggressive style of treating pain.

I moved onward in my journey with Fibromyalgia with a new pain clinic that had two doctors and numerous PaC’s. This new pain clinic was very large and not nearly as personal as the previous clinic, but they also had other methods for treating pain including a physical therapist and Psychologists on staff. I learned that Dr. George had passed away about a year or so later.

Now, I am in day-to-day management mode with Fibromyalgia. While I have some power to manage the illness, I do not control my destiny with it. I have to give and take with this dreaded disease. I have to make the most out of good days without overdoing it. I am disabled and I have a new life style that I am still getting used to.

With no cure even close on the horizon, I have had to let go of whom I was and become something different. I’m still figuring that out.

I’m learning to live on a smaller scale so I can have a life, not the life I assumed I would have but a life that’s better than being in bed every day. Although there are still days where the recliner is the only option.

Dealing with fibromyalgia the last eleven years has been a life time of its own. Looking forward makes me wonder what comes next and how will I deal with life? Now that I have experienced a separate life of sickness, the future looks different, not pretty, but not ugly.

Troy Wagstaff © Copyrighted, All Rights Reserved.

Fibromyalgia and Depression

Fibromyalgia and Depression

Some studies and reports say the up to 50 percent of all fibromyalgia patients suffer from depression. We know that depression, anxiety and all other mental health issues are a real physical disease that can be treated with the right medicine. Often many of these mental health disorders like depression are rooted in chemical imbalances within the brain. I don’t know for certain just how many fibro patients are plagued with depression or anxiety but to me, it makes perfect sense that so many would be thus affected.

Consider what we typically go through as fibro sufferers. Chronic pain, mental fog, fatigue, pressure, headaches, migraines, sore joints, malaise, insomnia and countless other symptoms. It’s no wonder that so many fibromyalgia patients have depression problems.

I would be willing to bet that almost all chronic illnesses have a higher percentage of their patients afflicted with depression. The chronic pain of fibromyalgia drives me crazy. Sometimes I just get furious in my mind that the dull, burning and aching sensations deep within my core just won’t stop. Pressure develops from deep-seated aches and pains that make me feel like a volcano is going to explode from somewhere on my body to release that pressure. But that volcano never appears and the pressure eventually relaxes.

When that happens every day, day in and day out, week in and week out, month in and month out, year in and year out, with no end in sight, it can make you feel like you are going to loose your mind. Perhaps that’s what starts the depression. Feeling the pain and know that while pain relievers will help they will not cure the pain. When all you have to look forward to is endless pain that is depressing.

fibromyalgia depressionI know that there are many who suffer from fibromyalgia who do not respond well the medicines presented to them. Perhaps they haven’t met the right doctor or just have a very complicated case of fibro. But for most people, we respond to one degree or another to medicine that treats the symptoms. Depression is another symptom of fibromyalgia. That would be depression secondary to fibromyalgia. But there are people who have depression independent of fibromyalgia. Whichever one you are, get help. Get medicine. But beware. Just like not every medicine will help fibro, not every medicine will work the first time with depression. Sometimes you have to try one medicine for a few weeks or a month, or so. If it doesn’t work, don’t worry. Try another one. There are enough depression medications out there that the chances of finding one that will work are very good. I know that for the symptom of intense muscle spasms, it took three or four tries to find the right kind of muscle relaxer to help me sufficiently. It turns out that I take one non drowsy type during the day and a different muscle relaxer during the night that makes me groggy. That way, I get help with my severe insomnia. Depression medicine can be similar in that it may take several tries to get the right one.

Medical scientists know far more about depression than they do about fibromyalgia so while you are forced to suffer pain and other symptoms like fatigue and fog etc. with the fibro, you should almost never have to suffer from depression. Just go to the doctor with your eyes open and you perception in check. But whatever you do, get help and don’t be tempted to self medicate, meaning drugs and alcohol. I have an alcoholic brother with PTSD as a Vietnam vet. He self medicated with alcohol and he has a slew of health problems as a result of the overuse of alcohol including the ravages of a stroke.

Don’t stand idly by and suffer from anxiety or depression. Get help. With fibromyalgia you have enough to worry about with the pain, fog, fatigue and dozens of other potential symptoms. You didn’t ask for fibro and you didn’t ask for depression. Get all the help you can with depression and maybe someday fibro will be like depression, take one or two pills and your fibro will no longer be a problem. We can at least hope, right?

Troy Wagstaff ©

I have no medical training. I am writing this article as friendly advice. I take no responsibility for what you do or your actions regarding this information.

Fibro Whatchamacallit

Fibro Whatchamacallit

I want to write about one of the other symptoms of fibromyalgia. It is called fibro . . . um, you know, um, its . . . where you know what you want to say but can’t think of the right word. You know, it’s where you know what the word is, you know what the word means and you know how to use it. You can describe what it means but you can’t think of the word. I want to write today about fibro- . . . it’s where you can’t remember the word . . . fibro-whatchamacallit but you know it’s the right word. Oh ya, its fibro fog.

Fibro fog is more than forgetting words or names. Fibro fog gets in the way of remembering or helps you to forget common and simple tasks.

When I try to describe fibro pain symptoms to someone who doesn’t have fibromyalgia it is hard for most people to understand the pain and the constant flu-like symptoms and the over all malaise.

fibro_fog2I think more people can understand fibro fog better than fibro pain. See if you can relate to these scenarios?

Have you ever spent a half hour looking for you glasses only to realize they were on your head? Have you ever looked for your glasses only to find that they are on and you didn’t realize it? Some things are just to embarrassing to admit to.

Have you ever gone into a room to get something and while looking around for it you realize that you don’t know what your looking for?

Have you every sent your kids throughout the house to hunt for lost car keys only to have your children point out the car keys are in your left hand?

These scenarios are just a sample of what fibro fog is like. It is more than forgetting. Fibro fog can make you more easily confused, harder to learn things and it can be harder to concentrate.

Here is another exacerbating issue of fibro fog, one of the symptoms that bothers me the most. My chronic daily pain will spike and I go through various rituals to fight the pain. Sometimes I’ll put the heating pad on my back and recline in my easy chair. I practice deep breathing exercises and then thirty minutes later I realize I forgot to turn the heating pad on.

Other times I will put a blanket on, remember to turn the heating pad on and a while later realize I forgot to take my pain meds. If you’re in such terrific pain, how could forget to take your pain meds? I do, more often that you might believe.

Sometimes, if you’re too despondent with fibromyalgia and its myriad of pain and symptoms the fibro fog can make you feel dumb.

I hope that people who read this little article on fibro fog will understand how complex fibro is and if it frustrates you to know someone who has fibromyalgia, just think how this illness affects us. We can plan from one minute to the next. We can be happy one moment and despondent the next. We can be ready to go one moment and in a flare up the next. The pain is awful and the fog just makes a bad thing worse.

Troy Wagstaff ©

Who Is The Boss? You Or Fibromyalgia?

Who Is The Boss? You Or Fibromyalgia?

If I asked the question “who is boss? You or Fibromyalgia” to the general public, who is the boss between you and fibromyalgia? The positive thinking, well-intentioned people would likely say, “you are.” If you have Fibromyalgia then you know there are days when fibro is boss. Just as sure as the sky is blue, fibro is the boss during fibro flare ups and during bad weather or during a cycle.

So I ask again, to my fellow fibromites, who is boss, you or fibro? I would like to know from fibromites who have this illness what they think about this question? Here is my answer to the question.

Let’s compare fibromyalgia to a long season sport like basketball or baseball. The season is long and it requires a lot of management from the personal player’s standpoint all the way up to the manager or coach of the team. They both are endurance games and seasons. As a coach, you know that players are going to have a bad game every so often, but you don’t bench him on that alone. You look at effort and overall contribution to the team. You cut the player some slack during a down period, and give him some special attention or training needed to get past the dry spells.

You can’t judge the season by the performance of a week here or there, you have to take it in its entirety.

So what I am getting too is the Fibromyalgia is a situation that needs to be managed as opposed to an illness to beat. Try all you want with your pharmaceuticals, diet, sleep, therapies, exercise, and positive attitude, there will be times that, in spite all of that you have done managing your chronic illness, a flare will come. It may be in a few days, a few weeks or if you’re lucky, it might not come for several months. But that flare up will come as sure as the sun rises each day, the flare up will come.

There may be times when you feel like you’re winning and there are times when you feel like you’re losing. But if you keep the managers’ mind-set in the battle against fibro, you can enjoy the good times more and pass through the bad times easier.

who_is_the_bossIt’s not easy to manage something as complex as fibromyalgia, especially if you have fibro fog. I wouldn’t say I am the best manager of the illness but I’ll tell you what I do to try and manage my illness.

I have advocated in a few of my articles the use of a journal. I am not the best example of journal writing but I have done it, I am doing it currently, and I’ve done it enough to know that it works quite well. Journaling helps you remember what your symptoms were on a given day. It reminds you what the doctor said. It reminds you about lessons learned by trying various activities.

There are a lot of things we can’t do with fibro and there are a lot of things we shouldn’t do with fibro, but everyone is different. I still want to live as much as I can so I do things, not crazy things, but I do them knowing I will pay for it in the coming days or even maybe weeks. I know I am going to be sore and sick anyway, why not have some fun on the rare chances that come my way to do something out of the boring, ordinary daily grind. I record what I did and how I paid for it. I forget a lot of things because of fibro. I try to record weather conditions and how I felt when certain weather comes along. I use my journal to keep track of certain medicines.

Journaling is fantastic emotional therapy because you can usually express yourself to a journal better than to anyone else. With a journal you can look up in the past and see what you did and how you paid for it with an increase of symptoms or you can compare weather patterns and how it affects you. Best of all, you can remember your past in as much detail as you put into your journal writing. You can also use your journal for keeping track of questions for health care professionals and their answers.

I tend to ramble on in my posts so I will wrap this one up as an introduction to how to manager Fibromyalgia. In this case using a journal is a great way to manage Fibromyalgia. There are several other ways to manage this sickening illness we know as fibromyalgia and chronic pain. Let me know by way of comments to this post what ways or what methods you use to manage your fibro.

Dealing with the question, of “who is the boss? You or fibromyalgia?” I don’t think it is a good approach to think of dealing with a chronic illness in terms of winning or losing but rather think of the battle with fibro as something to be managed.

Troy Wagstaff © Copyrighted

Look for at least three or more posts on how to manage fibro in the near future.

We Are Not Hypochondriacs . . . But Maybe We Should Be?

We Are Not Hypochondriacs . . . But Maybe We Should Be?

Fibrochondria

There’s always something to say about Fibromyalgia which speaks to the complexity of the disease. There’s always some new information coming out, not always helpful but sometimes that information is a gold mine. There is a lot to talk about when discussing fibromyalgia from fibromite to another.

That is where this article comes into play, discussing fibromyalgia from a fibromite who has more than thirty years of the disease under his belt to another fibromite.

This article is about “Fibrochondria.” What is Fibrochondria? It is a play on words obviously. It comes from fibromyalgia and hypochondria combined. To those with fibromyalgia, that may sound disturbing, but bare with me. Fibrochondria is the need for a diagnosed fibro patient to not confuse new or different symptoms with those symptoms that are known to come with fibromyalgia.

Consider this scenario: You have had fibromyalgia for seven years and by now are well versed in the symptoms you have. Of course you have the chronic wide spread pain and the fatigue but you’ve never noticed in seven years any symptoms related to memory loss or cognitive issues. Then you start to notice you are becoming forgetful. You walk into a room and forget what your looking for. Everyone does that, but in your case it’s happening way to often. All of the sudden you start forgetting words you know that you should know. You can describe the meaning of the word but can’t think of the word. This can come up in a mid sentence. You are forgetting names way too frequently. Other types of memory and cognition problems blur your mind.

You take a look at the symptom list of Fibromylagia and see fibro fog. You look into it a little more and decided that these symptoms are just another part of fibromyalgia. At least, now you know why you are having these troubles. We know that there is no know cure for fibro so you take a deep breath and forge on. At least now you know why you’re having memory troubles . . . or do you?

fibrochondria_1This is a big mistake to assume that the symptoms you are having automatically fall under fibromyalgia. It is very possible that what you have is fibro fog but it could also be a number of other issues with your brain. Don’t assume that a symptom you are having is part of fibromyalgia just because it is on the symptom list. Few fibro patients have every single symptom on the list. It is entirely possible to have just wide spread chronic pain and nothing else. Therefore, you should talk to your doctor first before jumping to conclusions.

We need to be hypochondriacs over every new symptom until we know if it is yet another fibro issue or something else. What I mean by that is that we need to keep on top of our health because we are chronically ill. If we can treat the new symptom then that is one less thing to worry about. So, if a new symptom presents itself, go get it checked out. If the symptom is something else, it could get worse.

I can relate to this. I have had bouts of lightheadedness and extreme fatigue many times over the past years but recently I was going through those symptoms again only it didn’t make sense. My CPAP was properly adjusted, by lungs and heart were both great. I had over come secondary pulmonary hypertension. My heart was healthy and by blood pressure was excellent. I was so fatigued I just needed to sleep. I wasn’t ‘fatigued tired’ but rather ‘fatigued sleepy’ in the extreme. I couldn’t shake the dizziness and lightheadedness and I played with some nausea. A time or two I thought I would faint so I quickly sat down and breathed slow and deep.

I went to the doctor to discover my heart rate was down to 45. The doctor put me through four various tests on my heart and lungs. Two tests were over night tests. I ended up with the Cardiologist telling me my heart is healthy and “looked great.” Since he didn’t want to rush into a pacemaker he instructed me to monitor my heart rate and blood pressure for six months and then go see him. They verified in two of the test that I was running a very low heart rate which, with one test got down to 36. My blood pressure continued to be excellent. All of the other tests “looked great” with one exception which was my cholesterol. It was a little high and since it was caught early I could easily manage it without meds.

As fibro patients we are sick of the term hypochondria because many health care providers have called us that or at least insinuated that we are making up symptoms and sometimes some fibromites have been accused as attention seekers from doctors.

To bring up the term hypochondria is treading on water, but it is something we have to consider. Not all symptoms that match fibro symptoms are fibro related. A single symptom could apply to hundreds of illnesses which is why we must be ever vigilant in determining if new health problems belong under the fibro umbrella or are their own illness or a symtpm of something else. We need to be fibrochondriacs.

Using the word “fibrochondria” is just to introduce a little levity in a despairing illness. This article is just my own opinion and in no way medical advise. Before doing anything that could affect your fibromyalgia or any other health issues always consult with your health care provider.

Troy Wagstaff © Copyrighted

How to Reinvent Yourself With Fibro . . . Living an Eventful Purpose Filled Life

How to Reinvent Yourself With Fibro . . . Living an Eventful Purpose Filled Life

I have had fibromyalgia for more than thirty years but the past eleven years have been debilitating and outright paralyzing. Because of how sick I became my blogging became erratic and eventually a burden. The first twenty years of fibromyalgia were diagnosed as arthritis. The illness had taken a severe turn for the worse and my health deteriorated very fast. I wrote a non fiction short story about my 31-year journey with Fibromyalgia that goes into the details of my illness and the myriad of symptoms.

I finally got the right doctors, the right diagnosis and my symptoms stabilized and in some cases improved. I was in a position to manage my condition to a certain extent. I have chronic fatigue, chronic pain, fibro fog which is a term used to describe issues related to the brain, memory and cognition. I have flare ups of various symptoms quite frequently. Living with fibromyalgia is like riding on an out of control roller coaster with no end in sight. There are occasional lulls in the ride and then there are unexpected sharp turns which are the fibro flares that occur frequently.

To make a real long story a little shorter I found out, through one of my pain doctors that writing, of any kind, is good physical therapy for the brain, similar to learning a foreign language. Any type of language art is good therapy for the brain to help maintain or regain memory loss and improve cognition.

reinventing_yourselfWhen my doctor knew, I was blogging and writing she said that I should do it every day as physical therapy for the brain. What started as a hobby became a type of therapy for dealing with fibro fog.

Part of my non fiction writing, deals with my experiences with fibromylagia. I write fibromyalgia posts to add to fibro awareness. I maintain a list of topics to write about regarding fibromyalgia.

One such topic was reinventing yourself after your life has been turned upside down from the terrible illness. I have reinvented myself with writing. I have been a published writer of technical articles in the defunct WordPerfect magazine more than 25 years ago. I have done on again off again non fiction writing through the years.

My personal re-invention is in the form of writing both non fiction on my blog CallahanWriter.com and fiction writing.

I came across a writing contest sponsored by Positive Writer and the topic was how writing has positively influenced my life.  In spite of my fibro fog the serendipity was not lost on me. This article was destined both to touch on the reinvention of my life as a fibromyalgia patient and to show how writing has had a profoundly positive effect on my life. Writing allows for self expression regardless of the genre. It also gives me good therapy and gives me a new identity as I seek to reinvent myself through writing.

About five or six months ago I got an itch to try fiction writing. I got hooked. Now I continue to write non fiction, as well as fiction. I have added a couple of short stories on my blog and will continue to do so. I am at various stages of two novels, one a historical fiction and the other fantasy.

As I have become much more serious about writing, I have seen some improvement in my memory issues. It will be a slow process. I have something meaningful to do each day which gives me a purpose. When you’re very sick over a long time, you tend to feel your life has no purpose. Writing gave that back to me.

For me, writing is the difference between a deep dark pit of despair and having daily hope. This is very important to the chronically ill. Writing a short story or a book will last many lifetimes and be a testament to my effort. Any kind of writing can be therapeutic from journaling to creative writing.

Writing is a way to express yourself. You don’t need to publish to be a writer. All you need to do is “take pen to paper” and express yourself. It can be therapeutic on many levels and it is a great way to live a legacy behind.

I needed to reinvent myself since I can no longer do what I used to do. Writing has been a gift to me. I can write when I feel good. I can sit on my recliner with my computer on my lap and write until I need a rest.

Writing is a way to bring something beautiful and positive out of something so insidious as fibromyalgia. Writing has been my rebirth. It has given me a sense of purpose and it gives me a reason to be excited about waking up in the morning. Writing fiction gives me a chance to create characters that can do things I can no longer do. I can live my life through my characters.

And to top it all off, I am getting physical therapy done for my brain. Writing is possible for anyone with an imagination and the ability to dream. I may only write an hour here or thirty minutes there but by the end of the day I might have a few hours of writing done. I have a purpose in spite of my severe limitations because of writing.

Troy Wagstaff ©

A Day In The Life Of Fibroman

A Day In The Life Of Fibroman

I have written several times about Fibromyalgia including a history of my 31 years finding out that I the disease. I’ve written about the bone crushing pain of fibro and other symptoms of Fibromyalgia including fibro fog. That’s what I’m going to write about fibro fog again with a story that is still happening.

Yesterday morning my laptop would not work. I didn’t have my data backed up and I couldn’t find my list of passwords to the various sites I needed and I couldn’t work on a new short story I had outlined the night before. I was in a panic.

a_day_in_the_life_fibromanI took my laptop in to get fixed. Turns out it was a hard drive issue. They said they were able to retrieve my personal data. I don’t yet have my repaired laptop so my fingers are crossed. But I did find my list of passwords today and so I was able to access WordPress and make this blog.

I had a rough day yesterday. If I would have had my list of passwords I could have used my wife’s computer and done a little writing, at least for my blog. She doesn’t have a word processor so I can’t work on my story yet. I am supposed to get my laptop back this evening. We’ll see.

The point to all this is that fibro fog is more than cognitive function and memory loss. That fog in your mind can, at least in my case, affect quick thinking and how to deal with major obstacles. My day was ruined when compared to my normal day. I was able to get some reading done and some research done for a book I’m writing. But I was really disjointed.

Ten years ago I would have been able to deal with things better and I would have probably remembered most of my passwords and this would not have been such a bad ordeal. Up until now I hadn’t realized that aspect of fibro fog and that interferes with these types of thing like switching quickly to a plan b or a plan c so to speak.

With the help of finding my password list I have been able to a least post this blog. Another issue is that with Fibromyalgia there is always something to learn about dealing with this terrible illness.

What Is It Like to Be a Guy With Fibromyalgia?

What Is It Like to Be a Guy With Fibromyalgia?

Why is it an issue to be a guy with Fibromyalgia (Fibro) as opposed to a gal with Fibro? It is a well-established fact that the vast majority of Fibro patients are women. Many studies have been done on the topic of gender and Fibromyalgia and they all turn out similar results. Statistically, of all reported cases of Fibro, 90% are women and 10% are men, one study indicated 85% women to 15% men.

What man wants to have a woman’s disease? “I don’t.” But I have it, so now I have to deal with it. What person wants to be sick? No one. When you are, you deal with it.

This hideous, bone crunching chronic pain disease is not for the faint of heart. But when you get it, you often feel faint of heart.

With this disease I suffer debilitating chronic pain throughout my body, sometimes all at once, sometimes just a few parts of my body. Since last Friday, I have had an overwhelming pain in my left knee. I have also had a line of pain that goes horizontally in the small of my back that feels like a fold. Meaning that if I bent over to far I would fall into that fold. It feels a lot like my knee, bone on bone. Throw in neck pain and muscle spasms all over my back. That’s what the last three and a half days have been like.

whats_it_like_guy_fibroBefore we go any farther, to those who don’t know what Fibromyalgia (Fibro for short) is, it’s a pain sensitivity that affects all soft tissue in the body. It does not affect the joints. However the muscles, tendons and ligaments are affected by Fibro which in turns affects the joints indirectly.

Most people associate Fibro with chronic pain. If you do then you’re right but there is more to the story than chronic pain. There are countless web sites that mention all the primary and secondary symptoms of Fibromyalgia. I’ll only mention the ones that bother me the most.

Fibro fog is the name of a small collection of symptoms that affect memory and cognitive functions. You’ve heard of people looking for their glasses only to find that their glasses are on top of their heads. Sometimes their glasses are right on their nose. Everyone has forgotten something important that they never dreamed they would forget.

Have you ever been speaking and in mid sentence forget the word you were going to use? You know what the word means and you can describe what the word means but you can’t think of that word? Have you ever gone into a room to find something and forget what you’re looking for?

All of these memory items and more are what many Fibro-suffers go through many times in one day. What’s worse is going into another room to take a pain pill because you are hurting. You get to the other room feeling that searing pain but you forget what you went in that room for. You go back to where you came from only to realize you needed a pain pill.

Day in and day out, these cognitive issues wear on you heavily. There is also a foggy sensation in your mind that makes you feel like you are not all there.

How many of you have suffered itchy sensations from allergies? How many of you have suffered those same types of skin irritations without any allergies? Welcome to my world.

When I was first diagnosed with Fibro, I thought I was completely fatigued due to all the pain sucking the energy out of me. Pain can do that but so can Fibro. Fibro ebbs and flows. When I am having a relatively good day, I can still feel fatigued because it is just another independent symptom of Fibro.

I could go on for several pages about my pain and symptoms but I have done that already in other posts here in CallahanWriter.com.

Because of Fibromyalgia I am severely limited to what I can and cannot do physically and even mentally with cognitive functions. I can’t support my family which I have done for twenty of the thirty years of marriage and family.

I can’t lift heavy things. I can’t lift light things that are awkward. I have sensitivities to sunlight and UV rays which affects being outside. I wear sunglasses almost everywhere I go. I tire easily so I have to pace myself.

All of these issues and symptoms of Fibro affect my interaction with my family, my Church, my old hobbies and activities. I am a different person in many ways since Fibromyalgia came along.

I have a very kind neighbor who mows my lawn every week all summer long. He and other neighbors shovel the snow on my driveway and side walks. I truly and deeply appreciate my neighbors but I also feel a deep resentment to my health for sidelining me from the physical activities of life I enjoyed so much and took for granted all those years.

I still think almost the same as before, but not completely the same. I have to entertain limitations when I make plans. I have to pace myself on good days so that I don’t overdue it, and have to pay for the fun the next day in agonizing pain.

I’m not looking for sympathy. My health could be worse. I just want people to be aware of how Fibro affects its victims including men. For me, I feel like a bum not being able to provide for my family. I feel like a bum when others have to do for me the things I no longer can do. I am in many respects a different person. I need to reinvent myself and that’s what I am working on at this time of my life. I have to plan a future that allows for countless sick days and chronic insomnia. I have to adjust to a day of unknowns. I can wake up in the morning feeling great and by lunch time I am in writhing pain only to feel better by nap time. These kinds of changes can happen four or five times a day or last all day or not bother me on rare days.

Try planning with those limitations. I’m a stubborn and traditional person and I find it defeating when I don’t feel like a man. Sometimes I feel like a blob on the recliner taking up space. Once in a while I go to bed gratefully for a semi normal day. Yes, it really is that dramatic.

Troy Wagstaff © All Rights Reserved, May be used by permission only.

Fibro Awareness

Fibromyalgia Awareness

It used to be that many unintelligent doctors called Fibromyalgia a “trash-can diagnosis.” That was very insulting to me and many of my Fibro friends. It now seems most doctors acknowledge Fibromyalgia. Now the issue with Fibromyalgia is to educate people to know that Fibromyalgia is much more than just a chronic pain illness. There are so many more symptoms to Fibro than just chronic bone crushing pain.

It’s not that we want everyone to feel sorry for us. We are still in education mode, trying to educate people about what we suffer. We have what falls into the category of an “invisible disease.”

Just because we look healthy doesn’t mean we are. People with mental health problems look healthy as do people with diabetes, unless they’ve lost a foot or leg.

fibro_awareness_2Just so you know, Fibromyalgia is like having the worst possible muscle aching flu all the time. Others say it is like having arthritis all over the body. Recently I hear a doctor say it’s like having a migraine all over the body.

I have had Fibromyalgia for 31 years I can state with absolute certainty that all of those comparisons are true.

Imagine having an illness with the following symptoms:

Memory loss, skin rashes, skin sensitivity, itchy dry eyes, blurriness, dry mouth, restless legs, IBS, headaches, chemical sensitivity, sun light and UV light sensitivity, insomnia, migraines, impaired concentration, depression, anxiety, impaired coordination, ringing in the ears, dizziness, and assorted neurological symptoms.

That is a long list of symptoms. You would be one sick puppy if you had all or most of those symptoms, agreed?

Like I said earlier, we are not looking for sympathy but education. When someone tells you they have been diagnosed with Fibro, now you know what they have to contend with.

Now for good measure, add chronic, body wide pain to the mix. Welcome to my world and the world of millions of other Fibromyalgia patients. Fibromyalgia affects both men and women, although more women than men are currently diagnosed.

 

Troy Wagstaff  © All rights Reserved

What It’s Like to Be Me With Fibro Fog

What It’s Like to Be Me With Fibro Fog

I’ve had Fibromyalgia for more than thirty years. When I was first diagnosed with my symptoms, they called it Ankylosing Spondylitis (A.S.), a “young persons” arthritis. The symptoms of Fibromyalgia matched remarkably well with A.S.

Over the years the types of pain and malaise have waxed and waned and even changed over the years. I have new pains mixed with the old as well as non pain symptoms develop.

More than thirty years later, my pain can be described like having the dull, aching flu-like symptoms throughout all the soft tissue in my body. This causes some of my joints to ache as though I had arthritis.

I also have muscle spasms throughout my back unless I take muscle relaxers then I just feel the sensation without my muscles contorting.

Fibro Fog

Fibro Fog

The symptom of Fibro Fog is, as far as I know, unrelated to the pain and just another menacing symptom. The problem for me talking about Fibro Fog first hand is that I don’t know if I am leaving details out or not, because part of fibro fog is memory loss.

When I was correctly diagnosed with Fibromyalgia about ten years ago, I did not have fibro fog. When I did start complaining about fibro fog symptoms, my doctors blamed my symptoms on the drugs I was talking. The number one offender being narcotics.

As time went on, I started to notice certain patterns of fibro fog which included memory loss. This memory loss was unique because of events that I knew I should remember but couldn’t. I wanted to say a word and I knew what the word meant and why I wanted to use it, but I couldn’t remember the word. I could even describe the word yet I could not recall the word itself.

I then started having short-term memory loss. I started to learn early on to write questions on paper when I went to a doctor appointment so I wouldn’t forget the questions. I would take notes during the appointment so I could remember what the doctor said.

In spite of what the doctor would say about my memory and it being the side effect of the drugs I was taking, I persisted in pushing them about the memory issues. I had a feeling it was somehow related.

I read a few articles on fibro fog and changed my approach with the doctors after they still denied fibro fog was a symptom. I would ask very specific questions about my memory and could that specifically be related to the drugs. More often than not, they would say that the drugs shouldn’t affect me that way. It took a couple of years for the doctors to admit to fibro fog.

Meanwhile, I felt like I was slowly losing my mind. Somewhere along that time frame one doctor suggested taking up a hobby. Physical hobbies are difficult for a fibro patient to do. After several months of being badgered to pick up a hobby, I decided I would get back into studying history. I’ve always enjoyed history from grade school on.

I got a few history books from George Washington to Abraham Lincoln to WWII and a couple of general history books. I decided I wanted to devote my study to the North African and European part of WWII. I have read more than twenty books to date on the subject with about twelve more books waiting to be read.

Having a hobby didn’t seem to help my memory issues at all. I got involved with WWII history groups on FaceBook and started to write a little about what I new. This was enjoyable.

It did bring some joy into my life but didn’t really help with my fibro fog. I would start to have my back pain flare up and then radiate from my lower back to my neck and knees and realize I was four hours late on my pain meds. I would get up and go to another room where I keep my pain meds. I looked around the room while in pain and forgot what I was looking for.

After a degree of frustration I would go back to my recliner and then the pain would remind me, “oh ya, I need to take a pain pill.” I went back into the other room and forgot again what I was doing. After a couple of minutes I would realize I was looking for the pain pills.

How can I have bone crushing pain, because I was late with my pain pills, and then forget that I was looking for them? Amazing.

Many times I have been in mid sentence only to forget what I was talking about. My fellow conversationalist would remind me what I had just said and sometimes I would go on with my conversation while other times I would say “I forgot what I was talking about.”

This happened at the doctor’s office more than once and finally I had enough presence of mind to say, “this is it, this is what I am talking about right here. I don’t know what word comes next.” My doctors finally started to accept the idea of me having fibro fog.

My fibro fog has improved a little and I’ll tell you how that happened in another post. Sadly though, in spite of some interesting therapy, I still suffer fibro fog.

Troy Wagstaff ©

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