Thursday, August 30, 2012

Daily Update: Bloodwork, et al.

I guess that I should consider this a weekly update because I hadn't posted in a few days. Anyway, here's my update:

After the CT scan was OK on Monday, I recieved two prescriptions for my headaches, Maxalt for my migranes and Butalbital for my tension headaches. They also doubled my dose of Amitriptyline to 100mg, which from what what I've read and have heard from others with fibro, is normal.

Tuesday, I woke up fine. I was feeling good, no headaches, reasonable pain level. I went to work.

By the time that it was 8:30, I was progressively getting worse physically. I had anxiety. I couldn't sit still, had pain down my arms and legs and felt very foggy (like a typical fibro, flu-like flare).

I felt like I didn't feel right in my skin and just wanted to lay down. Finally, I decided that had to leave work. I decided to drive home and if I was going to make the 27 mile trip, I thought that I needed to leave right then before anything got worse.

I called my wife once I was on the interstate and asked her to please call me doctor and relay my symptoms to the Dr. At the time, I thought that I may be having a reaction to the increased dosage of my Amiltriptyline.

I also called the neurologist that I was referred to see if I could move up my appointment (the closest that they had was 9/10 @ 2:30pm). I told them that I was worried and need something/anything if they can find sometime sooner because my biggest concern was that I have to still go to work and can't function.

Five minutes later, I got a call back from my wife asking me to stop driving ( I was getting worse anyway). I pulled over into a shopping center and she and my oldest on came to get me and took me to an emergency visit with the doctor.

The doctor saw me and ran some blood tests. The regular ones came back with an elevated white blood cell count. They were still waiting on the West Nile Virus results. While there, I was still really feeling strange, like my skin didn't fit me right. I know that that sounds strange. I was borderline delusional, couldn't walk straight, etc.

I was sent home with my wife while she picked up my prescriptions. The doctor told me to stay home from work for the next few days. I was essentially on bed rest.

I am worried as this whole two weeks has been a progressive downhill slide. I am working from home today... just trying to get through to this weekend.

Monday, August 27, 2012

Well, I just heard back from the doctor regarding my CT scan. Good news! It's clear except for a deviated septum. The bad news is that they want to refer me to a neurologist. I want to bang my head into a wall. I forgot to ask about the sinus infection clearing up, but did ask them about something for the pain.

This is getting to the point of being unmanageable.... constant headache, dizziness, fogginess, etc.

I'd just like an answer...

I've read that the dizzy/out of it foggy head feeling that I am experiencing is sometimes a symptom of general anxiety, although I have nothing to be anxious about except this headache... lol

Couple this with the fact that fibro is mixed in there and things get a little weird. Today is one of those days... One of those, one more hour days. Sometimes it seems like it's a "just 5 more minutes ay." I've got to make it through and then get some rest at home. Man, this is no way to live, but until I hear back from my Dr. I'm waiting... just one more hour.

CT Scan

Today, I awoke with a headache, fogginess, pain and dizziness. My wonderful wife made sure that I was OK and made it to the hospital for my scheduled CT scan. The scan didn't take long at all and I managed to get a copy of the images that they took, however, of course they don't make sense to me.

The people at imaging said that it'll take 24-48 hours for the official report to come back unless there is an issue. Of course, I didn't see any issue, which is good.

I place a call to my PA to let her know that I had the CT scan and that since the weekend is over, that I am out of medicine.

I then went to work foggy and dizzy.

Oh well, more later.

Sunday, August 26, 2012

Daily update: Headache and dizziness

This morning, I woke up without headache for the first time since I can't remember when. I took my antibiotics and ate breakfast. About an hour after I woke up, I started feeling a headache come on, took 500 mg of Naproxen and then took two migrain medicine pills (acetaminophen, aspirin and caffeine).

It has now been approximately 2 hours since I woke and now I am dizzy and am experiencing some brain fog and aches and pains.. I took my 10mg of Maxalt and am laying down.

The headache covers the front of my forehead and left eye.

Saturday, August 25, 2012

Daily update: Headache and cognitive issues

Today, I have had 2 doses of Malalt-Mlt 10mg. I took the first dose early this morning, followed by an Orbivan and the second one, with a Goody's headache powder at 3:30pm.

I have a headache in the middle of my forehead with numbness throughout my face and both arms.

I am very foggy to the point where I cannot think too clearly.

I also don;t understand... My headache was primarily on my left side above my eyes and now, it seems to have moved to th center of my forehead.

Friday, August 24, 2012

Daily Update: Headache and dizziness

Well, I thought that I was feeling a little better today, then I noticed that I had a migraine headache coming on and I looked in vain for the migraine medicine that the doctor had prescribed me. My headache started on the left side of my head, where I have ben having issues and then spread across the entirety of my forehead.

I then noticed a metallic taste in my mouth and an hour later, I still have the pain, amd laying down with a cool pack on my forehead. My wife went to the doctor's office (since I am dizzy and can't drive) to get some sample meds and to see if they can speak with the insurance company and schedule a CT scan.

Needless to say, this is thowing my body into weird fibro fits with miscellaneous pain here and there.
Maxalt was taken at 4:00 PM. Side effects include palpitations, confusion and tiredness.

The headache still persisted and a dose of Orbivan was taken at 4:30. So far, 15 minutes later, I still have the headache and it still ranges across my forehead.

Thursday, August 23, 2012

Daily Update: Dizziness

Well, today is my second day at full dosage (300mg) of Lyrica. I am also in the process of tapering of my Prednisone for my sinus infection.

In spite of getting a decent night's sleep (although my wife says that I tossed andd turned a lot last night), I am tired... really tired and lightheaded/dizzy today. In addition, my face feels numb.... a really weird sensation.

I looked up the side effects of what I believe to be the cause (my increase in Lyrica) and found the following information.

Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Lyrica:
Blurred vision; changes in sexual function; constipation; dizziness; drowsiness; dry mouth; headache; increased appetite; light-headedness; tiredness; trouble concentrating; weakness; weight gain.

Having nine of the "common" side effects is a real bummer. Man, it seems like there are always trade offs. It'd be nice to just feel good and think clearly.

Wednesday, August 22, 2012

Night Blindness Tips

In dealing with and researching my new-founded night blindness, I came across the following tips from the Texas Department of Insurance for people who experience altered night vision but are still able to drive after dark.

They are:
  • Remove sunglasses in dim lighting.
  • Wear prescription eyewear as appropriate.
  • Select eyeglasses with thin sides to increase peripheral vision.
  • Slow driving speed as necessary.
  • Ensure that all lights on the vehicle are working appropriately.
  • Use high beams when other vehicles are not approaching.
  • Use low beams instead of using solely parking lights or fog lights while driving.
  • Focus on the outer edge of the road when another vehicle approaches.
  • Adjust the rearview mirror to the night setting when vehicles are approaching from behind if the headlights are affecting one's vision
  • Use the daytime setting on the rearview mirror when headlights of following vehicles are off.
  • Keep the windshield and headlights clean.
  • Turn off interior vehicle lights while driving.
  • Dim lights slightly on the instrument panel if necessary.
  • Avoid using items that produce light while driving at night, such as a cell phone or cigarette while driving after dark.

Tuesday, August 21, 2012

Daily Update

Well, after dealing with my headaches, fatigue and memory loss for a while now, I just got to the point where I had to make an appointment with my doctor ASAP. My next scheduled appointment was in October and I couldn't wait that long. On Friday, I called the office and had an appointment scheduled for this past Monday morning,

I say the PA at the office and we talked and she examined me and performed some quick memory tests. It turned out that she thinks that I have a really bad sinus infection or “something else” causing my headaches and memory loss. She said that she could see that my left eardrum was “bloody” looking.

She prescribed me with Amoxicillin and Prednisone as well as a steroid nasal spray to help clear up the infection. She said that if I didn't have any sort of improvement in 3-5 days that she wanted to do a CT scan to see if anything could be seen.

She also increased my does of Lyrica, which should help with the pain.

I am still experiencing a great deal of difficulty in getting to and staying asleep. I've been averaging 4 hours per night, which with fibro, makes the next day (including today) a very difficult day. 

I also noticed that now, driving at night is VERY difficult. It looks like I am having an issue with depth perception and being able to focus on objects. It's like my headlights, even when on high beams, don't light everything and I have difficulty in judging distance. This was a scary feeling coming home last night as I have to extra careful. It looks like I'll have to relegate future driving at night to my wife.

Saturday, August 18, 2012

Fibro Funnies

Taken from Patients Like Me Fibromyalgia Forum

  • Your kid says "Mom, I need a hug" and then automatically climbs up on a chair.
  • You call your child and spouse "Hey you with the shirt."
  • You know the generic names for Elavil, Advil, and Percocet and can spell them all.
  • You stub your toe and it feels like someone dropped a grand piano on your foot.
  • You get up to change the channel on the TV and figure that while you're up, you'd might as well go to bed.
  • You're afraid that your doctor will retire, because then you'd need to train a new one.
  • Your medicine cabinet rivals the pharmacy down the street.
  • You're scared to take public transportation because the combination of perfumes might just kill you.
  • The list of foods you shouldn't eat (but probably do anyway) is longer than the list of foods you can and will eat.
  • Your favourite shoes are ones that don't require you to bend down to put them on. (Love them Birkenstocks!)
  • You spend more money on your office chair than you do on your computer.
  • You've tried or researched every supplement/vitamin/herb/snakeoil known to the world of medicine.
  • At the breakfast table, you hear snap, crackle, pop and you're not eating cereal.
  • Your back goes out but you stay home.
  • It takes two tries to get up from the couch.
  • Your idea of "getting lucky" is finding your car keys.
  • Everything hurts, and what doesn't hurt, doesn't work.
  • Chocolate is a major food group.
  • You quit eating meat, gluten, dairy, eggs and sugar. And you still don't feel good. (Probably tired from looking for something to eat.)
  • Your idea of weight lifting is standing up.
  • You can get lost in the soup aisle.
  • You own more pillows than socks.
  • You get the bagboy to help you out with your groceries, have him search for your car (which you can only remember is "blue"), and then realize you took the bus that day.
  • You think up a bunch of good ones to add to the list, but forget them before you can type them in.
  • If you try to tell someone about this very funny list you read and you can't remember even one item on it.
  • If you forward this list to the same person more than once.

Thursday, August 16, 2012

The Walking Dead, Part II

Well today is Thursday and I am happy that it is. It's one step closer to the weekend.

Following my Wednesday morning mixup, I ended up coming home from work a little early, just because of my fatigue and a really bad headache. In addition to that, I was smelling the scent of blood in my left nostril. The odd part was that I didn't have a nose bleed or anything similar. It was like The Walking Dead... they were here for my brain (or so it seemed)

A quick Google search yielded the cause being anything from a migraine to a brain tumor. Well, that was reassuring, but nevertheless, I went home and lay down with a cold compress and the light off.

Eventually, I drifted off to sleep and woke up in time to eat a little and take my evening meds, then fell back to sleep. 

Seeing that everything was "decently OK" when I woke up this morning, I'm going to chalk this attack up to having a weird migraine, although if it happens again, I may just go to the ER due to the strangeness of having a blood smell.

Wednesday, August 15, 2012

The Walking Dead

No, I am not talking about the TV series, The Walking Dead, but about functioning and going through a day with fibromyalgia.

People with fibro experience brain fog and fatigue and to be honest, it makes me feel like I am a zombie sometimes.

I can be walking down a hallway and close my eyes some of the time from the exhaustion that envelops me. I know that it is dangerous, but there are times that I don't have an option. The same thing goes when I am sitting at a desk or in any familiar area. It just seems like I go through the day like a zombie.

There are times when I go from place to place and don't even recall the journey there. It's as if I was in a fog and then suddenly arrived without any recollection of where I've been. As strange as that sounds, that is EXACTLY what it is like.

It's a scary feeling and one that I have to control so that I do not nod off all together, but it is very difficult to deal with.

Coping Techniques include:
  • Getting a good FULL night's sleep the day before
  • Not overdoing it during the course of the day
  • Giving yourself a chance to rest in between big tasks during the day
  • Shortening/modifying your work schedule (if you can)
  • Do what you can on your "good" days 
  • Plan your days with the most stressful tasks in the morning if you can
  • Remember humor. It helps to be able to laugh at the situation.
Today was a classic example for me. I thought that today was Friday (It's Wednesday) and I put on my jeans and Titan's Jersey and proceeded to head out the door. My office is business casual during the week, but casual on Fridays (where you can wear a team shirt or jersey to support your favorite team).  If not for my youngest son questioning my attire, I would've made quite a statement. :)

So, today, I am foggy and walking around barely making my way, but I'll get there.

Monday, August 13, 2012

Daily update: Today, I am not feeling well due to fibro and I am home from work. I just feel cruddy. I have a headache and all over aches and pains from my shoulders to the top of my feet. Feeling foggy and slow in my thinking.

Sunday, August 12, 2012

Tips For Dealing With People In Pain

This is not my own information. This article was copied from The author is unknown, but it it a pretty good article for helping to understand someone who has a chronic pain issue.

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge ( place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.
Daily update: Feeling foggy today. It's a beautiful day outside, yet I still feel crappy. I have a headache in the front right in my forehead and have miscellaneous pain in my arms and legs, specifically in my forearms, knees, ribs and clavicles.

Friday, August 10, 2012

The Spoon Theory

The following is a really cool article that I've read regarding dealing with handling a chronic disease on a daily basis. It's written by a lady who has Lupus and was explaining to a friend what it is like to have to deal with a disease that gives you a limited amount of energy daily that you then have to ration.

It is by far the best analogy that I have ever heard to describe someone who is dealing with a chronic disease/condition. It's one that I ALWAYS use when trying to explain fibromyalgia to others.

The Spoon Theory
by Christine Miserandino
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino

Please note that this story is copyrighted and should not be reprinted in any form without permission from the author. Feel free link to “The Spoon Theory” at - Thank you!

Thursday, August 9, 2012

The Mental Aspect of Chronic Illness

I've been dealing with constant fatigue and memory loss more so than usual lately. As a result, I have been dealing with a lot of mental issues.... Just thinking about "it". It's difficult dealing with "it", a disease that has no apparent cause and no apparent cure and one in which  medications/rest/exercise only work sometimes and when they do, it's not completely. It's an entirely frustrating situation to be in.

The following is an article that I read on the Men With Fibro website a long time ago. It's copyrighted by Don Fletcher and Fibrohugs and it's a really good article in trying to understand how to deal with Fibromyalgia.

The Mental Aspect of Chronic Illness
by Don Fletcher

Over the past several days events in my life have brought home to me a truth that applies equally to both living with a condition like fibromyalgia and life in general. That truth is that our thoughts have a profound impact on how we function. In life how we think about ourselves and our abilities will dictate not only what we do but also how well we are able to do it. With respect to our health, specifically living with a chronic condition like fibromyalgia, how we think dictates how well we are able to cope with the disease as well as how well we are able to function on a daily basis.

I must confess that I was reluctant to agree to write these columns. Why? The simple answer is that I have always been my own worst critic, a typical type A personality. When Ken first asked me to do this my thoughts immediately went to reasons why I should not do it. At the top of the list of those reasons was that I simply did not see what I had to offer, that I was not capable of doing a good enough job despite the confidence Ken had expressed in my abilities. And despite all that I have learned over the years and the things that I have accomplished I still have not learned not to be so hard on myself. I don’t need to be perfect; I just need to do anything that I set out to do to the best of my abilities. That is all that anyone can expect from themselves.

This same lesson also applies to how we deal with a chronic disease like fibromyalgia. All that we can expect from ourselves is to do the best that we can to the best of our abilities. If our bodies are hurting we cannot expect that we will be able to complete a physical task quickly and without stopping until it is done. If we are in a fog the same applies to mental tasks, we are simply not capable of completing those tasks quickly without stopping. But why then are we so hard on ourselves when we cannot accomplish these tasks in this fashion? Time and again I see posts where fibromites are expressing guilt or another negative emotion over the things that they could not do because their symptoms made it impossible for them to do those things.

The answer to that question lies in how our culture looks at health and illness. We expect to be healthy and that when we get sick that our medicine will be able to completely cure us and do so quickly. If it is impossible to cure what ails us then we expect that the disease will either kill us or else leave easily seen signs of its’ presence on us. We also expect that with all of the medical technology available to us that we should be able to know what causes every disease and be able to point to some kind of test that clearly shows that the doctors know exactly what is wrong with us, even if they are currently unable to cure it.

That is where the worst of our mental issues with this disease stem from. We don’t look sick so how can we be sick? And there isn’t a test that you can point to and say that the doctors found this and it confirms that I have fibromyalgia. As a result we have the problem with those doctors who refuse to believe that the disease actually exists and because of that debate there are those in the general public who also believe that this is all in our heads. On top of this all is our expectation that our medicine should be able to cure us or at the very least take away all of our symptoms and do it quickly. The lack of a single, totally effective treatment also contributes to the belief that fibromyalgia must be a mental problem. And too often we as fibromites buy into this garbage that we don’t get better because we don’t want to get better.

So we fibromites are left to deal with the doubts of both those around us and, much worse, the ones that we have ourselves. This damned disease as I have heard many here on Fibrohugs call it just does not conform to what we expect a disease to be. We don’t know what causes it, we don’t know how to cure it, and the best that we can hope for - to keep the symptoms under control - is a process of trial and error with no guarantee of success.

So what are we to do about this situation, how do we get rid of the doubts and get to a good mental place? Recently I read an article that stated that when a person is diagnosed with a chronic disease they go through the same grieving process that one goes through when someone close to them passes away. Having had the time to think about this I would agree that the process is very similar but in my opinion there are some significant differences due to the way that society views the two situations.

According to the accepted model there are six stages in the grieving process. Those stages are; shock, denial, anger, bargaining, depression, and acceptance. We do not go through this process in a linear fashion, progressing through each of these stages in order being done with each as we go on to the next. Each person will experience their grief in a different way, jumping between these stages and often revisiting some of them over and over again.

I want to be very clear here each person will grieve in their own way and at their own pace! There is no right way or wrong way to grieve so when I discuss the stages of grief as they apply to being diagnosed with a chronic condition I am taking this from my own experience. If what I say does not in any way resemble the process that you have gone through or are currently going through it means nothing more than we are different people.

With fibromyalgia I believe that there is actually another phase prior to the shock. Most fibromites that I know have said that their initial reaction to their diagnosis was one of relief, a feeling of ‘finally they know what is wrong with me’. The shock comes when you learn what it means to have this disease.

You have endured many months or even years of test after test trying to figure out what is causing you to feel the way that you do. Each time you hope that this is the one that will tell you what is wrong so that the doctors can then cure you and make you healthy again. And with each normal result the depression and despair gets a little worse. You are tired and in pain and no one can tell you why or, even worse, make it go away. And then finally a doctor gives you a name for what is wrong with you and you feel relieved to finally know that your problems have a name. But the relief is very short lived because you will then be told that all the doctor can do for you is prescribe medications that may or may not keep your symptoms under control. That it will be a process of trial and error because not all people respond the same way to these medications and it may take some time to find the right medication or, far more likely, combination of medications that will keep your symptoms under control.

And at this point and through the time that you are searching for the right medications to keep your symptoms under control you will experience the denial, anger, bargaining, and depression. There are many different thoughts that might come into your head during this time, some of them might be;

“I can’t have a disease like this. The doctors must have missed something. If only I can get them to keep looking they will find out that I have something else, something that they can cure.”

“Why me? Why did this garbage have to happen to me?”

“Please let this medication be the one! I want my life back so this one has to be the one that will make the symptoms go away.”

“What’s the use, I try everything that they prescribe and do everything that they tell me to do and nothing works. This is never going to get better.”

“Those damned doctors just gave me a name because they were not willing to do anything more for me! They gave up on me.”

“I can’t live like this. I wish that the doctors would either fix me or finish me.”

“I am such a wimp! I should be able to ignore how I am feeling and just do what I need to do.”

I could try to go on but these are some of the thoughts that I had while trying to come to grips with being a person who suffers with fibromyalgia. Again, each person will grieve differently so you may not have had thoughts like this and if you haven’t I hope that I have not planted any seeds in your head.

But how then do you get to a point where you can accept what has happened to you and be all right? And this is how I define the stage of acceptance; you accept what has happened to you and are at peace with that mentally. Because when dealing with a chronic illness there is another possibility, a stage I call resignation.

What is the difference? Acceptance is a positive stage, resignation is a negative one. In resignation you don’t accept what has happened to you, you become resigned to your fate. In resignation you resign from life because life has screwed you over and since you cannot live it completely on your own terms you decide that life isn’t worth living. You allow yourself to become angry and bitter but worst of all you refuse to do anything to try to make your situation better because you don’t believe that anything will work. Your attitude is why bother trying because you know that nothing will work. More to the point, nothing is going to work the way you want it to, it will not cure you and give you back the life you had prior to getting sick and you are not willing to settle for anything less.

The key to avoiding resignation and getting to acceptance is very simple. Yet as with anything simple it is also very difficult and not to be sexist, but it seems to be harder for men than it is for women. There are two parts to the key. The first is to learn three very simple little words; ‘I need help’. The second part of the key is to be willing to accept that help from any source.

Most of us are familiar with the Serenity Prayer, the one that goes God grant me the serenity to accept the things I cannot change, the courage to change the things I cannot accept, and the wisdom to know the difference. It is a simple prayer but it contains a rather profound wisdom in it. When dealing with fibromyalgia you need to be able to accept that which you cannot change, change that which you cannot accept but you need to have the wisdom to be able to tell the difference between the two. The problem is where to acquire that wisdom.

From experience I will tell you that the first thing that you must do is find a good doctor, one that you trust completely. You must have the confidence in your doctor that you know that they will be your partner in treating your fibromyalgia. And I say be your partner because if you have this disease you are going to be looking for treatment options on your own. A good doctor will be willing to listen to options that come from other sources and give you unbiased advice on whether or not such an option is right for you.

Develop a good relationship with your pharmacist as well. Keep in mind that medications are your pharmacist’s entire job while they are only a small part of the doctor’s. From my own experience it was a pharmacist who suggested Gabapentin for the overall treatment of the pain and Baclofen for the muscle tension.

When within your budget try alternative sources of therapy. I see a chiropractor because my neck and back often become very tight and sore. He is able to help me with those problems and ease the pain that I have. If it were within my budget I would also have tried massage as I have heard many say that it helps them. There have also been other treatments that I would like to have tried but due to financial constraints was unable to. But be careful here of any product that makes claims that seem to be too good to be true. As with any other disease there are those who prey upon the desperation of sufferers in order to make a quick dollar.

But this covers mainly the physical part of fibromyalgia. You must also be willing to ask for and take help from sources that will help you with the mental aspect of the disease.

Ask your doctor if there are any pain clinics that operate in your area. For newly diagnosed patients there are programs that will teach you skills to help you deal with the physical and mental aspects of your chronic illness. Health regions in Canada have also begun to offer classes like this. The one offered in my region is called “Living Well with Chronic Conditions” and it uses a workbook titled Living a Healthy Life with Chronic Conditions.

But these courses offer only the basics of dealing with the mental aspect of your fibromyalgia. You also need to ask your doctor to find out if there is a psychiatrist in your area that specializes in the treatment of patients suffering with chronic pain. I can see that many are shaking their heads right now thinking, ‘first he tells us that this isn’t all in our heads but now he says to see a psychiatrist’. I understand that there is a stigma attached to seeing a mental health professional of any type and that the reluctance to see one is made much worse by the quacks who tell us that fibromyalgia exists only in our heads. However, there are two extremely important reasons to see a psychiatrist who specializes in treating patients with chronic pain.

The first of those is that these doctors can teach you methods to ease your pain through the employment of certain mental exercises. The second and more important reason is that no one can be in a situation in which they are almost constantly in pain without having it grind them down mentally. A psychiatrist or psychologist has the training to help you deal with this constant mental pressure. They can also help you work through all of the emotions that accompany a chronic illness, especially the ones where you use yourself as an emotional punching bag. After all, negative emotions will also make you feel worse physically as well.

And during the period of grieving there will, unfortunately, be a lot of negative emotions. You will face the task of having to adjust to the new you, the one that has fibromyalgia and accepting that the old you, the healthy you, is gone. And to pile on the difficulties for you at this time you will also have to deal with the reactions of those around you to what has happened to you. Some of those closest to you will be sources of comfort and support while others will be sources of stress and anger. And there is no escape from the situation and as all too many of us know having to deal with all of this change and loss can be overwhelming.

But just as you need a doctor to help guide you through the process of getting your physical symptoms under control you also need a psychiatrist or other mental health professional to help you deal with the mental aspects of the disease as well. Trying to ignore them will not work; they will not simply just go away. If you try to do this those negative emotions will fester just below the surface and the problems will get worse until it will come out in ways that you never intended. And while the negative emotions fester they will quite literally make you sick, or at least sicker than you have to be because they will be a constant source of stress and anger.

In the end what it all comes down to is this; in order to feel the best that you can with this damned disease you have to treat both the physical and mental aspects of it. And while you can try to do it alone it will be a shorter and easier journey if you can just say ‘I need help’ and take that help from every source available to you.