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

Posted on April 24, 2015 by Troy Wagstaff

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

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22 Items For Your Fibro Emergency Go-bag

Posted on April 4, 2015 by Troy Wagstaff

Fibro Emergency Go-bag. Fibro Awareness

In my youth I was a boy scout. I enjoyed the camping and activities but I didn’t advance very far in rank. I did learn something that has stayed with me ever since, it was the concept of being prepared. When you have fibromyalgia or other chronic invisible diseases, you are limited to what you can do. But there are times when you must act, no mater had badly you feel. There are times when, in an emergency, you have to pick yourself up and go and do. You have no choice. I realized that in spite of my poor health, the world didn’t stop for me. There were times I had to get up and go tend to an emergency. It took a few ER visits to learn this valuable idea. The idea is a fibro emergency go-bag. There is nothing like a five-hour ER visit with uncomfortable surroundings and furniture to make your chronic pain worse. The go-bag is a back pack or big purse that has things in it that you can grab in a hurry and go. The idea is, that the list is checked off and the items are in your bag ready to go in an emergency. I’ve had many opportunities and countless hours to refine this idea. It’s been tested and I am grateful that I had it. I’ve been through about 15-20 ER visits with my daughter and her pseudo tumor cerebri and about12 surgeries. My wife has had cancer twice and countless procedures, chemo, radiation etc. I’ve even used the bag for my own doctor visits. It’s all prepared and ready to go. I don’t know how long a new doctor will take so I go prepared. Grab the go-bag and I’m ready. So I got a back pack and filled it with various things. I usually over prepared my bag and it got a little heavy but I was never bored again. Besides activities I realized the need for some comfort items as well. I made a list from my experience of things that have proven to be helpful. It is modified for women as well. 1. Extra Cell Phone Battery 2. Cell Phone Charger 3. Two day’s worth of all your meds 4. Earphones for your cell phone 5. Book(s) to read 6. A notepad 7. Pen or pencil 8. Med. List 9. Medical History 10. Scriptures 11. Food, at least enough to take your meds. Protein bars or energy bars 12. Bottled water 13. Cards or some other small game 14. Emergency money other than what you have in your wallet. 15. Small comfy pillow 16. A small blanket 17. Pair of comfy socks 18. Tens Unit 19. Heating Pad 20. Reading Glasses 21. Personal female items 22. A few DVD’s fibro_emergency_prepThese items are only designed for bear minimal comfort and emergency medical items like your meds. The idea isn’t to take your bedroom with you but just enough to make a seven-hour ER visit as pleasant as it can be with fibromyalgia. In my case I’ve used it for many ER visits and I’ve used it for when I would have to wait up at 4:00 a.m. to get my daughter to surgery by 5:00 a.m. I didn’t have to do anything but get dressed and grab my bag. I have my pills and some food already in the bag. I can take my meds on schedule regardless of what the Café hours at the hospital are. This go-bag has helped a lot. Several times when we went in for early morning surgeries, we would not return home until ten or eleven at night. That bag made a big difference. I will explain my logic for these items. As you read this article make a note of what sounds right for you. If there are things you think of that I have not mentioned then write them down in your notes and leave a comment for me. Others may like your ideas as well. Item’s four through ten can be found on a smart phone which makes items one and two very important. An extra cell phone battery can be a life saver for a smart phone. You don’t always have access to a wall outlet to keep your battery fresh. So if you run the battery down then add the spare battery. Whenever possible, keep your cell phone charged. I like having two days worth of essential medications because I wonder, what if I have to spend the night at the hospital? I want to be prepared. Or what if your emergency is in bad weather and you get stranded over night. It sounds paranoid but with fibro pain you cannot afford to take matters lightly. Ear phones are important because you can’t play your itunes in front of a bunch of strangers. Music can be soothing when you’re stressed so don’t be stuck with a great play list and no way to easily listen to it. A smart phone can enable you to read ebooks and scriptures, listen to music and watch streaming videos. But if you get bored or get eye strain with the digital screen then a traditional book may be a welcome change of pace. The idea here is to keep your mind off of uncomfortable situations and hopefully help manage pain by not dwelling on it. A notepad and pencil might be nice to have to keep notes about what’s going on. There are many good reasons for these two items in your fibro bag. However, a smart phone can serve that purpose as well. Why would you need a med. list and medical history if you are responding to someone else’s emergency? You never know. When you’re in a lot of stress things can happen. Med. lists and medical histories are something you should have with you whenever you go, anywhere, all the time, just in case. I like having scriptures with me because when I am in a stressful situation like and ER visit or waiting for an operation, I find it comforting to read some from the scriptures. This could also be on your smart phone. You’re not going for a hike but I found it good to have a little food and water in case I was in an awkward situation and needed to take my meds. I have a few protein bars and one or two bottles of water. I also like having a few dollars in my go-bag in case I don’t have any in my wallet. Vending machines around here don’t always take a debit card. Items 16-19 are items for comfort like a special pillow you may like, a soft pair of socks are nice if you need to sleep during the day. A soft familiar blanket helps to make you feel at home or more relaxed. A tens unit and heating pad have saved me more than once. If I have a flare up, which is common in stressful situations, there is nothing better than my heating pad. None of the reading material and none of the non telephone aspect of your smart phone will do much good if you need reading glasses and don’t have them. It took a while to think of DVD’s That item may or may not be a good idea for you. For me, it was a good idea because most of the hospitals around here have TV’s and DVD players. Sometimes you need something else besides reading to relax. It’s not on the list, but making a reminder note and putting it somewhere obvious in your go-bag is a good idea. This note should be a reminder to get up and move around at least once an hour. Move, walk and stretch every hour as needed to reduce stiffness and getting more sore. Troy Wagstaff © Copyright, All rights reserved.

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Traveling With Fibromyalgia – 7 Lessons Learned, 6 Things We Did Right

Posted on April 2, 2015 by Troy Wagstaff

Traveling With Fibromyalgia – 7 Lessons Learned, 6 Things We Did Right
Doing anything with fibromyalgia is hard. Getting in and out of the shower takes a lot of energy. Going grocery shopping is exhausting. His work such as laundry, dishes, vacuuming is difficult, sometimes downright impossible. So if doing these ordinary daily activities is so difficult, why would anyone with fibromyalgia consider traveling?

Many who suffer from fibromyalgia don’t travel. I don’t blame them at all. There were many years when I was one of them. I didn’t have the energy or the right medicines to manage my illness, let alone travel. The chronic pain, chronic fatigue and fibro fog of fibromyalgia feels like it is sucking the life right out of you.

In the last four or five years, after spending six or seven years trying different medicines and therapies, I am at a stage where I can manage my illness better, at least until a flare comes up. While I have traveled some since fibro came into my life, I still don’t travel as much as I would like or as much as my wife would like.

However, I have been able to travel on occasion and I want to share some experiences about traveling with fibromyalgia and hopefully others can learn from my experiences, good and bad, and have better vacations as a result.

When people go on vacation, they do so to leave their work and stress behind. The Fibro traveler doesn’t have that luxury. That includes the pain, the fog and fatigue. We can just leave it at the office or at home and take a vacation from our illness. We have to take our illness with us.

travelling with fibroThe first trip I took after my Fibro became advanced was with my wife, Colette to Yellowstone. I think that trip was about five years ago. She made the initial plans and before she booked anything we went over what she wanted to do and what I thought I could do. It involved give and take on both sides, but most I did the giving and taking.

We compromised, mostly she compromised because I had to scale back a lot of her plans, according to what I thought I could do. It involved a lot of driving the first day, the days in the middle were much less driving and the drive home was divided in half. We drove half way home, then stayed in a Hotel. The next day we drove the rest of the way home.

It was five nights and six says all together. The first day we saw a lot of beautiful Idaho farm country and wilderness. This was a learning experience because we drove too much the first day, but had to get to our motel because of reservations. With the help of a tens unit while in the car and a heating pad in the hotel room I did it well enough. It wasn’t perfect, but it went well enough. I did have a certain amount of adrenaline going on, which helped to a point. My legs and hips were strained, stiff and sore.

The first mistake so far was in driving too much the first day. The second day we made a mistake by not staying to our schedule. We asked the locals at the motel what some cool sites were in the greater Yellowstone area that the typical Yellowstone tourist wouldn’t see. They told us about some waterfalls on the Snake River.

It sounded great. It was a great stop for nature lovers, but it was off the travel plan we had made. In my adrenaline induced ambition, I walked far too much including several flights of stairs built on the side of the gorge.

When we got to our Yellowstone cabin, we were late again. I was extremely worn out. So much so that I couldn’t even drag a small suitcase into the Cabin. All our luggage had wheels except for a couple of backpacks. I managed to carry my CPAP machine and my laptop into the cabin. The manger of the cabins carried a great deal of our luggage, thank goodness.

I soaked in the very hot, hot tub that night. It was nice because we were deep in the country and the night was very dark and the stars were very bright. The next day was a planned day off for relaxation and recuperation. I soaked a few times in the hot tub and rested. The cabin rental had a nice restaurant twenty yards away. I didn’t do anything all morning, but rest. During the afternoon I started feeling restless. I was still tired and sore, but I was also bored sitting around. Should have brought some DVD’s or books to occupy me while I rested.

Off we went to places closer than Yellowstone. We saw some wonderful things like the headwaters of the Henry river which is one of two sources of the Snake River. We returned to the cabin and I was worn out, but not exhausted. I soaked in the hot tub.

The next day started in the hot tub which is a great way to loosen up along with a hot shower. We finally got to Yellowstone. Saw some big Elk in the distance. We saw a Buffalo walking on the side of the road. We saw a lot of wildlife but no bears.

When we were in the car for more than an hour, I used my tens unit. That really helped the back and neck, but my legs always got very stiff and sore. We spent two days in Yellowstone, I think. While we were in a small town in Montana, I think it was called Yellowstone, my wife went shopping alone. I did a little shopping but mostly I sat at a table with a soda pop and rested. Then we left for home via a hotel half way back. That was the best decision we made while planning our vacation.

Because of the ability to really rest on the way home, we were able to stop at a wilderness drive through park. We drove through the park slowly with our windows rolled up. We saw up close a lot of bears, a wolf, deer and an albino elk among other animals. I was very good at taking all MEDs right on schedule. When we got home, I was completely worn out. I spent four or five days in bed (bed for me is my recliner). It took that long to get back to my normal sick self.

Seven lessons learned from that trip are:

1. I did more than I thought I could, but I still did too much.

2. Drove too much the first day.

3. Didn’t stay on the schedule.

4. Hot tubs are essential to loosen up quickly in the morning and relaxing at night.

5. Did not take rest stops to walk around. That is very important on road trips.

6. Tried to manage expectations, but didn’t do as well as we should have. We did learn from that trip about managing expectations that we applied to future vacations.

7. Get a stronger convertor. The stronger the better.

Six things we did right that saved the day:

1. Allowed for recuperation time. I should have used it all.

2. Tens unit was very helpful.

3. The heating pad was very useful in the hotels and cabin, but the converter wasn’t strong enough to get the heating pad hot enough in the car.

4. Went on the first trip without kids. This was as much a learning event as it was a vacation.

5. Took a couple of days worth of extra MEDs. Didn’t need them, but It was good to have them.

6. Planed for extra money not included in our vacation budget. In case I needed something I forgot and couldn’t do without. We used some of it.

This was my first fibro vacation. I was glad I went and I have great memories. If you haven’t taken a vacation since you came down with fibromyalgia, I would recommend a small vacation and plan for it not to go as planned. Keep expectations low and you should be fine. Make it a small, test run vacation to learn from. Consider a day long road trip or a one night test vacation for the experience of it.

To answer the question posed at the beginning, why would anyone with fibro want to travel? I would answer the question by saying that we want to be as normal as we can. We want to see new things and have adventures just like anyone else. We know that some vacations are impossible for a fibro patient to do. But sometimes you can rest and sit and still see new sights and hear new sounds and be refreshed by a change of pace. We want to get away from it all as much or more than most. With a little foresight and planning, many types of vacations are possible.

Troy Wagstaff © Copyright, All Rights Reserved.

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

Posted on March 27, 2015 by Troy Wagstaff

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 ©

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A Song Dedication To Fibro Awareness – We Are The Champions

Posted on March 18, 2015 by Troy Wagstaff

A Song Dedication To Fibro Awareness – We Are The Champions

Dedicating ‘We Are The Champions” by Freddie Mercury to Fibro Awareness

Fibro Awareness words in (parenthesis)

I’ve paid my dues
(Chronic muscle pain, muscle spasms, or tightness)

Time after time
(Day after day, hour after hour, minute after minute, with no end in sight)

I’ve done my sentence
(Moderate or severe fatigue and decreased energy, Insomnia or waking up feeling just as tired as when you went to sleep. Stiffness upon waking or after staying in one position for too long)

But committed no crime
(I didn’t ask for this, I didn’t go looking for it.)
And bad mistakes
I’ve made a few
(Doing things I knew would hurt the next day)
I’ve had my share of sand kicked in my face
(Well meaning people or family being insensitive or lack understanding or empathy)

But I’ve come through
(I’m still alive and fighting)

And we mean to go on and on and on and on
(We intend to see a cause and cure and hold on with hope)

We are the champions – my friends
(We will not give up hope!)

And we’ll keep on fighting Till the end
we_are_the_champions_fibro_awareness(It’s not in us to give up, we are fighters to reclaim some sense of our former self.)

We are the champions
(We are champions for not giving up hope.)
We are the champions
(We will no longer be ignored by the medical establishment!)

No time for losers
(We have no time for negative people in our lives. We try to stay positive in the midst of pain. We need positive attitudes around us more than ever)
‘Cause we are the champions of the World

(We will be the champion of the world when everyone that suffers from fibromyalgia will have medical help and a cure.)

I’ve taken my bows
And my curtain calls

(Our bows and curtain calls will come when they know what causes fibromylagia and have a cure or better treatment)
You brought me fame and fortune
And everything that goes with it
I thank you all

(We thank everyone who has supported us and understood us throughout our disabling illness)
But it’s been no bed of roses

(Difficulty remembering, concentrating, and performing simple mental tasks AKA Fibro Fog. Abdominal pain, bloating, nausea, and constipation alternating with diarrhea, AKA IBS)

No pleasure cruise

(Tension or migraine headaches, Jaw and facial tenderness. Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold)
I consider it a challenge before
The whole human race
And I ain’t gonna lose

(Our health has been taken from us but not our hope. With hope we can’t loose.)

And we mean to go on and on and on and on

(And we mean to see this illness through to the end!)

We are the champions – my friends
And we’ll keep on fighting
Till the end

(We are not the type of people to give up.)
We are the champions
We are the champions
No time for losers

(We’ve had many distractors calling fibromyalgia a trash can diagnoses and other disparaging remarks. We have no time for negative people.)
‘Cause we are the champions of the World

We are the champions – my friends
And we’ll keep on fighting
Till the end

(We choose not to let the constant bone crushing chronic pain keep us down. We will keep of fighting until a cure or better treatment is found.)
We are the champions
We are the champions
No time for losers

(We have no time for negativity or distractors. We are down enough and we need positive energy around us to help us fight this chronic illness.)
‘Cause we are the champions

(Not giving up makes us champions my friend.)

Fibro – Awareness

Fibromyalgia Symptoms:

Chronic muscle pain, muscle spasms, or tightness.

fibro_symptomsModerate or severe fatigue and decreased energy.

Insomnia or waking up feeling just as tired as when you went to sleep.

Stiffness upon waking or after staying in one position for too long.

Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”).

Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome).

Tension or migraine headaches.

Jaw and facial tenderness.

Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold.

Feeling anxious or depressed.

Numbness or tingling in the face, arms, hands, legs, or feet.

Increase in urinary urgency or frequency (irritable bladder).

Reduced tolerance for exercise and muscle pain after exercise.

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A Day In The Life Of Fibroman

Posted on March 13, 2015 by Troy Wagstaff

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.

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Fibromyalgia Awareness

Posted on March 11, 2015 by Troy Wagstaff

Fibromyalgia Awareness

I have had Fibromyalgia for thirty-one years. My Fibro has been officially diagnosed for eleven years. I have learned a lot about the illness. Two things I know about the disease are that other fibro patients want validation and they want to know they are not alone.

fibro_awareness_callahanwriterBy adding a Fibromyalgia – Fibro Awareness thread to my Blog I can help with those issues. Doing so will add another important community to the Fibro world. Check back to CallahanWriter.com often. My goal is to post two or three Fibro related Blog posts a week. Share these Fibro posts with other fibro patients. Perhaps these posts will help others.

I’m listing three posts to fibro awareness posts that I am particularly proud of or are posts that have more likes or feedback that others. I hope you’ll like them as well.

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.

 

How Fibromyalgia Affects My Daily Life
The way Fibromyalgia effects my daily life can be summed up with two words, freedom and reliability. Having Fibromyalgia is like putting an innocent person in shackles and taking him to jail. Except you don’t take off the shackles. His freedom is taken away. He can barely move around in the small six by eight-foot jail cell.

 

Journal Therapy For Fibromyalgia
Six reasons to keep a journal for a fibro warriror

 

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What Is It Like to Be a Guy With Fibromyalgia?

Posted on March 9, 2015 by Troy Wagstaff

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.

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Wouldn’t It Be Nice To Plan On Being Sick?

Posted on March 3, 2015 by Troy Wagstaff

Wouldn’t It Be Nice To Plan On Being Sick?

I think you all can relate . . . You’re in bed or on your couch curled up under a warm blanket and every muscle in your body hurts. You’ve got the flu. Hot and cold sweets, a fever that comes and goes. You’re dizzy and you’re so weak you can hardly lift your head off the pillow. The noise from the TV drives you crazy. You toss and turn even though it hurts because you can’t get comfortable. You know that in a few days you will be better but until then you feel like you may die.

The worst thing about this situation is that when you woke up that morning you drank your orange juice and you were anxious to get to work. You had your week planned out and you were feeling great. A few hours later you were hit in the head with a 2″x4″ and you were deathly ill with the flu. Your plans for the week are out the window. Now you are laying in misery wishing you were dead.

I am willing to bet the farm that most of you who have read this have had something like this happens more than once in your life. I am sorry for you and that hideous experience you’ve been through.

I know what that is like and my Fribo friends out theirs know what that’s like. Fibro fighters have this sort of thing happen to them all the time. In several different ways.

Unless you have had Fibromyalgia, it’s hard to fully understand the aches, pains and malaise of fibro. Some say it’s like having the flu throughout your body, day in and day out. Other would say it’s like having arthritis in your muscles. Some say it’s like having a migraine throughout your body.

Fibro, The Unpredictable Disease

Fibro, The Unpredictable Disease

Pain aside, it is the unpredictability that is another hard thing we have to contend with.

You wake up eating a good breakfast, you leave for work feeling on top of the world and within a few hours you’re laying sick in bed with the flu.

Just like the scenario of feeling good in the morning and then by the time the evening news rolls around you’re fully engulfed in your flu bug.

This is one of the predictable things about Fibromyalgia. It is unpredictably good and being predictable.

We can wake up one morning feeling like we go on a nice long walk, ten or twenty minutes, and then before we actually get our walking shoes on we get a migraine or a flare up that feels like a heart attack or a broke hip.

It is often less dramatic. We can cycle through feeling well (well is a relative term) and then an over whelming malaise and back to feeling good, three or four times a day. Does this sound hard to believe? It’s true.

I have had Fibromyalgia for thirty-one years and I am telling it to you straight. No exaggerations.

Fibromyalgia is not the least bit predictable. One minute is good the next minute is bad.

What inspired me to write this piece on the unpredictability of Fibromyalgia, is that two days ago, on Sunday I was walking down the hall, I turned a little putting my back against the wall so my wife could pass. Just as my back rested on the wall I got shot suddenly with a bout of dizziness and weakness. I just stood there in shock. Apparently I looked awful because my wife asked what was wrong. I was shocked at how suddenly my health had turned on me again. No warning.

I stood there for several minutes and then felt barely good enough to get back to my recliner. Less than an hour I was feeling as fine as Fibro allows.

What I m writing sounds like fiction but it is not fiction. It’s a weird and frustrating fact of life with fibro. If you don’t believe me ask someone you know with Fibro.

There is one more thing about this disgusting unpredictable disease. You are a poisoner to your own body. You are getting ready for an evening with friends. It’s been a good day. Then just as you are ready to go out you suddenly feel lousy. Your muscle and joints ache all over. You have to call and cancel plans for the third straight time.

Many people with Fibromyalgia find that after several years with this awful illness their pool of friends is much smaller, if not dried up.

Fibro is an illness of contradictions, unpredictability, pains and it is very real with no end in sight.

Troy Wagstaff © All Rights Reserved

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Fibromyalgia is Real – A Poem

Posted on March 1, 2015 by Troy Wagstaff

Fibromyalgia is Real  – A Poem

Fibromyalgia Is Real

Fibromyalgia Is Real

This is the first fibo-awareness post I have posted from CallahanWriter that I didn’t write. I met Tabatha Schulz on a Fibro group on Facebook Fibro Family Christian Support Group. She agreed to let me post this delightful poem on my blog. Enjoy.

What’s this you say? Fibromyalgia’s not real?
How about you step into my life and just see how real it feels!?
You couldn’t handle it, not even for a day!
This is my life, the pain never goes away. The unending pain, the stiffness is real!
The leg cramps, hands trembling, How does it feel?
My stomach is wrenching, My ears ringing too I’m fatigued and have insomnia… How does that feel to you?

Fibro Poem

Fibro Poem

The IBS has my stomach tied up in knots, and nausea too I wish this would stop!
The pain in my joints is totally insane, Am I even going to be able to walk today?
My skin is on fire, and my muscles burning in pain!
My head hurts and my mind is foggy again.
Dizziness, depression my list could go on… Living with this illness is going to be life long.
So how does it feel to be in my shoes?
Next time be careful the words that you choose… See Fibromyalgia is VERY REAL!
Now you know how our daily life feels.
So be kind and understanding, don’t hurt us with words
We just want understanding and our voices to be heard.

Tabatha Schulz ©

Used by permission

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