A Supplemental Way To Manage Pain – TENS Unit

A Supplemental Way To Manage Pain

Treating Localized Pain With a TEN’s Machine

I have always advocated a scientific pharmaceutical approach to treating chronic pain, fibromyalgia, chronic fatigue and other chronic invisible illnesses. Here’s why. . .

More than thirty years ago, late in 1984 I was diagnosed with ankylosing spondylitis (AS), a unique form of arthritis. The symptoms of fibromyalgia and AS are very similar to each other. So, for more than twenty years I had arthritis, or so I was told. I learned back then, through literature published by the National Arthritis Foundation to be leery of “snake oil” remedies. Unscrupulous characters are out there praying on the people who are desperate with pain and are willing to try anything to get out from under dire pain.

Unless people selling these remedies have scientific research to explain why their solution works, I ignore it. It cost too much money, effort, emotion and false hope trying everything that comes along. Heck, people can’t even afford legitimate medicine let alone unproven solutions.

Additionally, using the TENS machine is not, in my opinion, a replacement for pain MEDs. I use it to supplement what I am already doing to manage my pain.

TENS UNIT

I am writing about a TENS Unit for treating chronic pain. I would not mention it, if I didn’t have first had knowledge of its proven ability to manage pain. I don’t have the finances to try everything that comes along and I don’t have the emotional energy to pin my hopes on every little unproven hope for a cure.

The TENS Unit is a proven piece of medical equipment that helps manage pain. I have more than ten years of experience with the TENS Unit. Back in those days, you had to have a prescription to get one and most of the time, a pre approval from your insurance to get a TENS Unit.

Now days you can get one from the internet, medical supply stores, physical therapy and chiropractor offices. From my experience they work wonderfully.

“TENS” means “Transcutaneous Electrical Nerve Stimulation.” The way it was explained to me about eleven years ago was the electrical signal scrambled the pain signals that are going to the brain. When these scrambled pain signals get to the brain, the brain doesn’t recognize the “ouch” signal and doesn’t know you’re in pain. They also said that the signal stimulates blood flow to the affected area which helps the body heal the affected area.

What they now say, eleven years later, about a TENS Unit is similar to what they said a decade ago with a few exceptions. “TENS machine works by sending stimulating pulses across the surface of the skin and along the nerve strands. The stimulating pulses help prevent pain signals from reaching the brain. The TENS device also helps stimulate your body to produce higher levels of its own natural painkillers, called Endorphin’s.”

They didn’t mention anything about endorphin’s eleven years ago in conjunction with the use of a TENS machine.

The electrode or pads as I call them send electricity into the body “Transcutaneously” which means under the skin but not very far. I wear a TENS Unit often and in public. Sometimes I can conceal the unit, itself in a pocket but not always. When people see, this machine clipped somewhere on my shirt they ask about it. When I explain that the machine relieves pain by sending electricity into my body, they are aghast at the thought of deliberately “electrocuting” myself.

tens_machine_pain_management1It’s not that way at all. If you have ever been shocked by electricity, don’t worry, a TENS Unit is very different. It is electricity, but it’s not like getting shocked. It feels kind of prickly and sometimes warm and there is a pulse like feeling. It is weird, very weird, but very worth it. I highly recommend it along with your tried and true pharmaceuticals.

You no longer need a prescription to buy a TENS machine. They are affordable for most people. There are a few things to consider about the TENS Unit. The wires that connect the electrodes to the TENS machine are very fragile and can easily get damaged. You have to buy electrode pads frequently as they wear out. For me it is worth it. It is very helpful in minimizing local pain. You can always buy new wires when they wear out or get damaged.

I have learned how to maximize the effect of the TENS machine for me by placing them very near the major nerves that come out from the spinal cord. Strategically placing them covers a wider range of your nervous system. They also have different size and shapes of the electrode pads. The effect of the therapy radiates out from the pad covering a bigger area than what is covered by the pad. I have found that the bigger the pad isn’t always worth the increased price.

Personal Experience

I have not had the benefit of a TENS Unit for a few weeks because my wires got damaged. As a result, my neck slowly and steadily got more and more sore and very stiff. The last four or five days the portion of my spine that goes through my neck feels like it has turned into a 2″ x 4″ stud in place of my neck. It was so stiff and sore that it hurt to bend my neck up, down or sideways. Then I started to get very dizzy. The dizziness came in spurts. Some episodes of dizziness last several hours and forced me to sit being too dizzy to walk.

I know that dizziness is a symptom of fibromyalgia, but it is also a result of other symptoms and medicines. I had a feeling the dizziness might be associated with the pressure in my spine and the stiff pain in my neck.

I waited to write this article until my new wires came in and I could have a several hours with the TENS attached. I knew it would help my neck and tension headaches, but wondered if it would also help relieve the dizziness from the pain and pressure in my neck.

I got the wires yesterday in the mail. I wore the TENS machine for about six to eight hours on two places on my spine. Most of the time the patches were attached to the neck area and an hour or so attached to the t-spine area because of the pressure in that region.

Within a half hour the chronic headache went away and the neck relaxed and the 2″ x4″ went away. As I finish this article, right now my neck is stiff, but not at all sore. Since yesterdays TENS therapy I haven’t been dizzy.

Pros and Cons

In my opinion, the TENS machine is a miracle item for chronic fibro pain. I even use it on my thighs, forearms, wrists and calf’s. But there are some pros and cons I can think of, you may want to consider.

PROS:

It relieves pain, even strong pain.

With widespread pain, sometimes MEDs will only work on certain areas. The patches of the TENS Unit can be localized just about anywhere, but not directly on bone or near the eyes. (Always read the instructions that come with the Unit.)

With intelligent use the TENS machine can be used for more than localized pain, but not for widespread pain. It will help wide spread pain, but not as effectively as localized pain.

Even though it is an electrical machine, it is natural and doesn’t have any medication side effects. Our nerve signals are carried by electricity in our body.

CONS:

If you wear it like I do, for hours on end, the skin touched by the adhesive on the patch can get red and irritated, sometimes even itchy. Most people and most recommendations do not suggest wearing the TENS for that long.

The patches need to be replaced. They can be pricey, but they tend to be more affordable online.

The wires are the single most fragile part of the Unit. If they get shorted out, you’ll need to replace them

All the TENS machines I’ve owned (around five or six) take nine volt batteries. They wear out and need to be replaced.

There are four pros and four cons. However, in my opinion, the pros outweigh the cons. If I ever travel, even for a single day road trip, I always make sure I have spare batteries and patches. They really make a difference. They are a good investment to make in pain management.

Members of my family and a few friends have used my TENS when they have hurt themselves with sprains, kinked backs etc. To me it is a miracle machine.

Troy Wagstaff ©

This article is written from personal perspective and is not medical advise. I am not liable for any medical issues arising from the information in this post

Fibro Awareness Memes

Fibromyalgia Awareness Memes

I like to create memes as a way of coping with fibromyalgia. These are free to use for fibro awareness if you like.

fibro_fog1


fibro_awareness_subart


forgiveness_future1

June – National Men’s Health Month – Men And Fibromyalgia

June – National Men’s Health Month – Men And Fibromyalgia

I just heard about men’s health month today and I realized that as a man with health problems and since it is still June, why not contribute to the men’s health discussion for Men’s Health. Fibromyalgia is an illness that men suffer from. It is not just a disease for women only.

Since I have something to say about men’s health I will try to take advantage of my position of long experience with fibromyalgia, chronic fatigue and traumatic brain injury.

Most of what I have to say about men’s health is related to one of the diseases of the central nervous system called fibromyalgia. If anyone is paying attention, fibromyalgia is currently reported as predominately a woman’s disorder. Many experts suggest that this is because it is under reported by men. For whatever reason, men do not complain about it as much or go to the doctor as much as women do regarding the symptoms of fibromyalgia.

This may be true, but if it is true, it would only account for a small percentage of men. If men had the chronic pain I have had and still have, they would be sprinting for the doctor’s office to find out what’s wrong.

national_mens_health_month2But let me tell you my dear reader, that millions of men suffer from fibromyalgia around the world and through America. My award winning blog on fibromyalgia has been read in over thirty countries on every continent. It’s not just a health care concern in America.

My blog about fibromyalgia is CallahanWriter.Com. For my blog, I write about fibromyalgia, chronic fatigue and related symptoms from a guys perspective and I write about these symptoms in general for both genders. Most symptoms, both genders can relate to. The emotional side of fibro between men and women are surprisingly the same in many areas, yet, of course, different in some areas.

I have some posts that are unique to men like The Day In The Life Of Fibroman and What’s it like to be a guy with fibromyalgia.

I have written a detailed story about my personal experience with fibromyalgia and the thirty-one years that I have had it. My 31 Year Journey With Fibromyalgia.

Some of the symptoms of fibromyalgia are widespread chronic pain that afflicts joints, and the pain may also affect major and minor muscle groups. Fibromyalgia also causes cognitive disorders, body temperature disorders, coordination problems chemical and light sensitivities and the list goes on.

Some experts believe that rather than go to the doctor, many men with self medicate with alcohol or drugs. That is never a good idea. These experts report that self medication will make the symptoms worse over the long haul.

There are many other symptoms to fibro in addition to the pain. Chronic fatigue. This is where you do not have energy for anything. You can be tired all day or the fatigue can be so bad that you sleep all day or nap for hours on end every day.

Fibro Fog is where your cognitive skills that you take for granted go out of whack. Your memory is affected, you forget things, you forget names, you can get disoriented and the list goes on.

national_mens_health_month1You can lose some coordination in your motor skills, your extreme limbs can develop neuropathy and they can develop tremors. The problem is that so many symptoms can be presented that it is easy to diagnose other illnesses based on the symptoms, but when this happens you never feel fully satisfied with the diagnosis. There is always something popping up.

Fibromyalgia is typically a diagnoses of exclusion, which means you need to rule out Lyme’s disease, MS and other similar illnesses with similar symptomology.

When you get a proper diagnosis, then each symptom can be treated appropriately with respect to the other symptoms.

When I was first officially diagnosed with fibromyalgia, there was little written about it on the internet. Now there are countless words used to document it. There is a lot of garbage written about fibro and there are as many cures as there are peddlers wanting to sell their wares. Don’t get fooled by them. It is a disease of the central nervous system, from your brain to the tips of your last nerve endings. There is no known cure. The best we can have as victims of fibromyalgia is to treat each bothersome symptom.

Fibro Awareness

Fibro Awareness

There is no known cause of fibro but there is a lot of similar speculation that traumatic brain injury like concussions and other serious bodily injuries or past mentally traumatic incidents can cause fibromyalgia. I have had more than five concussions and several body wide injuries in my life before fibro symptoms manifested themselves. There is a possibility that those are valid conceptions, but it is still too early to say for sure.

If you are a guy with fibro, what is your story? How has fibro affected you? If you know a man with these types of symptoms forward this post or URL to them. Men need the help that is out there for fibromyalgia. My blog covers how fibro affects me and about the issues of fibro in general. The blog is for men and women. I have decades of experience with fibro and I feel I have a lot to share by experience to the discussion on fibromyalgia. Feel free to follow this blog so you can a notice when new posts occur so you don’t miss anything.

Troy Wagstaff ©

A Day In My Life With Fibro – At The Movies Jurassic World

A Day In My Life With Fibro – At The Movies Jurassic World

I went to see Jurassic World this evening with my daughter. She was taking me on a date for a father’s day gift. Ya, she’s awesome. I enjoyed the movie. We didn’t see it in 3D thankfully. I was overwhelmed with the traditional 2D viewing, because something happened while I watched that great movie. All the big scenes and noise and motion and wide shots were a lot of visual stimulation.

jurassic_world_big_movies-fibroI didn’t notice it at first, but then after a while I was getting a small headache. My eyes got tired and I felt over stimulated. I know I’m getting old, but I think it may be related to fibromyalgia and the related sensitivity issues. I don’t see any 3D movies anymore because they are verifiably hard on my eyes and head. But now the big concept, big scenes type movies for the summer are coming out and I worry that I may not be able to see them.

I really liked Jurassic World, and I did see the original Jurassic Park. To me they are two different movies with a similar theme. The movie got me hooked and I stayed the whole time. But now it seems that parts of me like my eye’s, neck and brain are still coming down off that sensory roller coaster I was just in.

Have any of you had that problem with big movies with a lot of noise, action and big scenes? I wonder if it is related to chemical and light sensitivity that fibro is known for? What do you all think?

Victimization Caused By Fibromyalgia, Chronic Fatigue or other Invisible Illnesses

Victimization Caused By Fibromyalgia, Chronic Fatigue or other Invisible Illnesses

A victim is, by definition, some who have had something happen to them that causes pain or destruction, against their will.

We typically think of a victim as a person who was the victim of a crime like abuse, rape, murder, assault, theft, or fraud to name a few. Being a victim of a crime is a good example of being “a victim.”

But, what about applying the term to health issues? Is one a victim of some types of illnesses or diseases? If it happened again there will then the answer is yes. However, applying health issues to the term “victim” can be sticky because some would argue that health problems are a consequence of our actions. I agree with that. There are many avoidable diseases and illnesses. But there are many that, as of now, are not avoidable and thus serve to victimize the person who suffers from that illness or disease.

fibro_victim1Cancer is a disease that springs to mind when talking about victims of poor health. The invisible diseases like Chronic Fatigue, Chronic Pain and Fibromyalgia are also illnesses that come to mind, victimizing their hosts.

I have had Fibromyalgia for more than thirty years. The last eleven years have included chronic bone crushing pain. The years before that included a lot of pain, but It came and went and was far from chronic and it was much easier to manage.

I didn’t ask for it. I didn’t deliberately live a lifestyle to bring on the disease. No one knows for sure what causes fibroid, but some speculate that physical trauma or emotional trauma can trigger the disease. I’ve had five or six traumatic brain injuries and several broken bones to go along with the injuries that caused brain concussions. If that is the reason I currently suffer from chronic pain, then fine, but I never deliberately set out to get hit in the head with a flying baseball bat or get hit by a car while riding my bicycle etc.

So what? Now we have established that those of us with invisible illnesses are victims of these illnesses that we didn’t ask for, what does that mean to me? How will that help me cope with fibromyalgia?

No matter what pills the doctors give us, no matter what therapies work for us, we are never out of pain completely. There are always pain and malaise lurking somewhere in our bodies. Having a constant illness and pain wears us down physically and emotionally. The only known treatment for fibromyalgia is to treat the individual symptoms. That includes the symptoms of the mind or brain.

Some of those symptoms can be as medical as anxiety and depression. Other symptoms can be feelings of guilt, lack of acceptance, hopelessness, helplessness, insecurities, anger, sadness, poor self esteem, lack of spirituality and increased frustration. If we can get on top of those symptoms it will help that part of the complex equation of fibromyalgia. These are feelings and issues common to people who have been victimized by whatever happened to them against their will.

victim_invisible_illnessWe will look into these topics on the upcoming posts called Victimization By Invisible Illnesses Parts two, three, four and maybe more.

Make sure you are following this blog so you will get notified when these other posts are made. Or bookmark the blog and check back often. These additional posts will be made over the course of the next several weeks.

How do you feel about the idea of being victimized by fibromyalgia, chronic fatigue or other chronic pain illnesses? Have a story to tell? Let me know in the comments section. Make your voice heard. You may just be the right person to validate someone else who struggles.

Troy Wagstaff ©

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.

Who’s In Charge? You Or The Doctor? Seven Ways

Who’s In Charge? You Or The Doctor?

When you are chronically ill with something like fibromyalgia and other similar invisible diseases, your doctor can be your best friend or worse nightmare. Your health is like a roller coaster and the doctor is like the operator of the roller coaster. He can control the ride and make it a pleasant one, or if he is thoughtless or careless he can make the ride a nightmare.

You need the best doctor(s) you can find. You are the manager of your team of doctors. Seldom, can a fibro patient get by with one doctor. You need other doctors even if you only see them once or twice a year. There are so many contradictory side affects that you occasionally need to see other doctors so you know that your symptoms haven’t turned into some more than a fibro symptom.

A good example would be the pain in the area of your ribs and sternum. The pain during a big flare up can make you think you are having a heart attack. You need to see a cardiologist on a regular basis like every six months or every twelve months depending on the counsel of your cardiologist.

fibro_whosthebossThis way if your EKG, blood pressure, heart rate and cholesterol levels are known to be good then you can have some confidence when you have a flare up in the sternum area. If migraines are a chronic problem then you should have a neurologist on your team of doctors. You get the point. You need to look at your symptoms every so often to make sure they are still related to fibromyalgia and not anything else.

It is so easy to blame everything on a fibro symptom. But that is bad fibro management.

Since you are the manager of a team of doctors, that makes you the boss. This answers the question “who’s in charge? You or the doctor?” Since you are the manager you are the boss. You can hire or fire your doctor which is one way to can exert your power over them.

I know that there are likely many fibro patients who live in remote areas and may not have easy access to a full team of doctors but you still need to play an active role in your health care and not just take what the doctor says at face value, and this goes for everyone.

A doctor goes to medical school and then specializes in a type of medicine then he goes to work. He keeps up some of his education by annual training classes and by reading medical journals.

But that doesn’t always keep your doctor up to speed on the every changing world of fibromyalgia.

Your own personal education is part of the responsibility of being in charge.

Some people might take issue with my point of the patient being in charge and not the doctor. After all, the doctor is highly educated and trained. Your doctor controls your access to medication and therapies. This alone would make people think the doctor is in charge. But that just isn’t always the case.

How to be in charge of your health and team of doctors.

Seven ways to be in control of your medical health.

1. Come to the appointment prepared. Write down all your questions and review them in the waiting room and be well prepared with those questions.

fibro_whostheboss12. Take notes while in your visit with a doctor, especially if you have fibro fog.

3. When the doctor prescribes medicine ask if the new drug will react negatively with the meds you are already on. They should know, but they can still overlook your prescription medication history. Over the years I have asked that question and there have been four or five times that a doctor stopped and looked at my list of medication and actually changed the medicine. It doesn’t seem like they would overlook that aspect of your visit but they are human and they make mistakes.

4. Don’t be afraid of them, speak out and tell them what you think. Don’t be intimidated by their advanced degrees. This is your body and your life. Ask questions and tell them what your thinking. If this is a problem with your doctor and he doesn’t like it, go to another doctor.

5. Remember that in spite of their advance degrees and training they are human and they make mistakes.

6. Don’t let doctors push you around. I’ve waited as long as six hours for one doctor and I quit seeing him after the post op check up. I’ve waited for hours to see doctors before only to hear them say at the end of the anointment, “I’m running late and I need to get to my patients.” I held my ground and told him I’m not through. I have also made statements such as “I waited for two hours and now it is my turn.”

7. If your doctor is a jerk, fire him or her and get another doctor. Your life and your health are too important to be blocked at every turn by an uncaring doctor.

You are the manager of your health care team and your client (you) is very important. Be the boss and act like the boss because you are the only one who can really manage your health.

Troy Wagstaff ©

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