Dear Bloggers,


I'll tell you how I look at my companion for life called fibro, it became a part of me in my daily life. Acceptance is difficult but as time passes it is becoming easier and by falling on your face you learn things the fastest way. Anxiety is a poor guide so if it is diagnosed then go and search for positive stories on the Internet. What struck me in the beginning that there were much more negative than positive stories to find. But with a little bit of effort put into searching I was able to find them. I have experienced it from the beginning as a terrible thing and the capriciousness with which it all comes and goes makes it difficult to control. Yet I have at some point found some rest and made a good deal with my body. I'm less anxious to do things and I started with a physio fitness program was tailor made for me. In the beginning I had to get used to the idea to do anykind of sports as in my opinion this was absolutely impossible. Still, I put on my "naughty" shoes (sneakers) and gave it a shot. But after the third lesson it was disastrous because my body totally refused to join these days and seriously frustrated I returned home.

Knocked out by FMS

Many people are told by "well-meaning friends/doctors" just get out & exercise. Yes, exercise is very important but it is not a cure, nor is lack of exercise a cause. And it is very possible that they may only be able to do a few light stretches, or to walk one block at a time. The exercise routines I used to do are no longer an option for me. Even athletes who start having problems with FMS have to start at the bottom. It is very frustrating. Exercising causes major pain so it is very important to start slowly. Another problem with FMS is the delayed reaction. Sometimes pains from "over-doing it" don't hit until 24 to 48 hours later. So it is very easy to over-do. You may think you are doing ok, but then the next day it will hit you & knock you flat. Despite the pain it is important to find a routine because it will help you cope and deal with your complaints. If you start slow you will eventually build up to where you can do more & more. Proper counseling is very important, but more importantly you know yourself what you can handle. Your trainer is there to tell you how you do things the right way to practice. The taxation of your body you should try.

My best friend and companion for life: Fibromyalgia

I found peace only when I started practicing Tai Chi and I was told to improve my situation and accepting you are having a disability. A Tai Chi practitioner who ends up in a combat situation, is not so much concerned with eliminating the adversary, but to improve their own position. This requires often initially reported to give up something first. The Tai Chi practitioner does not experience this as a loss but as an investment. By accepting it, it will create a greater freedom of movement within a better position than relativly can be taken by the other. Then the other must give up his position is not as objective but as a side effect experienced by both parties. (There is not so much as a loser in competition, but a recognition of being the better half in the other). For me this was the way to deal with the person that I've become now. It's not really complicated if you know what you can do, and your borders are not your limitations. Also this is a form of acceptance.

Fibro-fog is another aspect that can really throw a person off. Fibro-fog basically means that you can not think clearly and that is sometimes quite difficult.This ranges from doing "stupid" things (like putting the salt & pepper in the refrigerator and putting the milk in the cupboard or forgetting words you have used since kindergarten) to very severe fibro-fog where you can't function (write checks, drive a car, cook dinner, follow a conversation, etc). I often suffer from memory problems as some of the files that exist on my hard drive are erased especially many memories from the past. But some things excist no longer and happened shorter than one year ago. Yet I know I do here to save the story to run. With statements of "Well, help me out on the road."Many times when people are experiencing fibro-fog they don't even realize it! It can be so severe that people may think you are getting dementia. Fibro-fog can occur in short periods here and there, but sometimes days or weeks, even this is different from person to person.

Well I stick to this phrase like always: “Live life as long it is there, pray for less fights, spend your last money on a drink and fuck if your life is depending on it.”

The Old Sailor,

Staying active with FMS

Dear Bloggers,


Staying active when living with fibromyalgia is a necessary challenge. If you rest, you rust, like the old saying goes. And I think that's true when it comes to fibromyalgia. Something is off-the hook in our central nervous system, and that produces exagerrated responses to things that would otherwise not be painful to a person without fibromyalgia. Sometimes, there's nothing to respond to, the pain is just there and nobody knows how it was caused. Sitting still is the logical response, intelluctually speaking. If I just don't exercise, maybe I won't cause any pain and I'll feel better. But the exact opposite is true. If you do not stay active, you will be in even worse pain. Believe me, I have done both, and it's far better to stay active than it is to become immobilized. This following section is devoted to a once-active man with fibromyalgia who wanted to get back to his active live. Who is still active but may be having trouble modifying his lifestyle to accommodate fibromyalgia's impact.

Each fibromate has to learn his own energy “accounting system”. This will take a few weeks or months or even years for you to establish, but once it’s established it is possible to keep the balance stabilized, and even to make a deposit once in a while. I’m deliberately trying to explain it the easy way. But it’s very simple really, to understand it. Think of it as a cash drawer, or a jar of coins.

You have 24 hours, but less than 24 cents or Euros. Eight hours are devoted to sleep, so that leaves 16 waking hours, but less than 16 Euros/cents. Assuming you’re working full-time, that’s another eight hours, which will use up more than eight currency chips. Why will working eight hours use up more than eight chips? Because, with fibromyalgia any mental or physical exertion, and any work-related stress, uses energy faster than that expended by a person without fibromyalgia. And you still have to take a shower, get ready for work, take care of the kids, fit in some exercise, eat right, work on a hobby, grocery shop, clean, cook…

No longer can you “do it all” like you once could. Those days are gone. Give them a bittersweet goodbye, it’s time to style a new life. Grab hold of your new chapter, this is a positive change. Fibromyalgia is not a death sentence, it can be one of the most positive things that ever happened to you. It’s just possible that you are “doing too much”, and fibromyalgia has forced you to slow down. That’s what happened to me, and it’s one of the best things that’s ever happened in my life. So, please, don’t let it get you down. Learn to live with it, work with it and grab life with both hands and enjoy everything you can do. This is what life is about: Even it looks like a dead end street, but if you look right you will find the small alley in it for a new way into life. I truly believe fibromyalgia was a just certain sign to stop me from running all the time. Before I had fibromyalgia, I was running around, never tired, overmotivated, and hyperinspired. I was given the gift of an invisible illness that was incredibly hard to diagnose. So that I could share my experience with others and find out more and more about myself.

So, what needs an active man to do? Why because rest rusts, I need to stay active, of course! Everything in moderation, though. And I need to keep track of those pennies. It makes cents.

Just Say "No"
With just saying no, although it is not easy in the beginning you will keep better track of your energy.
The danger always is there and when you have a "good" day, you have to take extra care.
I’ve always admired a friend of mine who isn’t afraid to say no, and isn’t afraid to insist on what she wants. I would think to myself, “I want to be her.” We all need to learn to be true to ourselves and not be afraid of what people may think if we excuse ourselves as we know what we want and need. Most of us fibromyalgics are not that easy to live with. As we are not want to ask for help eventhough we need it. Smiling as we do not accept yet another “assignment” from a neighbor, friend, co-worker, relative who is laying the lazy speech on us. No, actually, it’s not fair, because I have a chronic, invisible illness. I’m sick every day of my life, every minute of every day. It’s just that the assigner of the project can’t see that, or maybe even doesn’t know.

Maybe it is better for me to learn what my friend does. Take an invisible, deep breath, sit or stand nice and tall, adjust your posture, make direct eye contact, and just say "No."

The Old Sailor,

It became very quiet in my life

Dear Bloggers,

Due to the autumn holiday, our kids slept over our old babysitters house. I was at home with oly my wife and we decided for a change not to turn on the television. But just sit down at the kitchen table and discuss our future plans. We ended up talking about our old house and made drawings about what was needed to be done, if we could buy the “old” house back. We had very happy times there and we did not have a lot to worry about. Nostalgia was winning terrain and we left behind more realistic options. We could of course buy a bigger and more suitable house. But what would happen if I all of a sudden would call these people and make them an offer that they could buy our house for a few grant more. And these ideas are coming from someone that has no job, no money and no common sense.

It is about time that they come knocking on my door from the “Postcode Loterij” and let us win a reasonable sum of money. We do not need millions but it would be nice that we could realize this funny dream. Here we go again I simply got too much time to think and my brain starts to overreact. Strange enough I am not the only one that is thinking up these kind of crazy ideas. My wife is coming with even bigger plans for the same property. More and more I start thinking about it , and figure out that how stupid we have been to sell this house. Somehow I am doomed tomake these kind of mistakes in my life.

Somehow I think that I was not born for luck at all. As a young lad, I was not the smallest kid, actually you could call me chubby. When I was approximately seven years old, I fell off my pony and hit the stones in the road. My mum took me to the doctor and he told her that my arm was heavily sprained and I should stop whining. After three nights of no sleep as well for my mum and me, we went back to the doctors office. And my mum demanded to get some X-rays made of my arm. The doctor disagreed but my mum was very persistent and got a note for the hospital. At the hospital they gave the answer that the arm has been broken, but it had started to grow back together again. So they had to break it again to get it better located to make it at least a bit straight.

A couple of years later I was in the same hospital again. I was most of the time having trouble with my flu and having a chronic cold all of the winter period, so it was time that my tonsils were removed. A simple operation you will check in in the morning and in the afternoon you could go home again. Well this was not my case, after a few hours I was bleeding pretty badly and I was rushed back to the hospital. I had to stay there for a week to regain my streght as I lost 1½ liters of blood and my body could not cope with large bleedings or wounds.

My adolescent years did not pass without any scratches when I was sixteen years old and driving a moped, I slipped on a rainy evening and hit a lamppost. Consequences: A sprained shoulder and a damaged ego. And of course a lot of damage on my moped. A couple of years later I bought my first car. When you are young, free and single you might end up like me. I was running a bit out of time as I had to work that afternoon. And I started driving reckless but my speedlevel was unfortunate too high for the road curve that I needed to take. And yes I did hit the brakes but the only thing that happened was that I ended up on one side together with my car. Actually I was lucky that only the side of the car was scratched up and the mirror had broken off. I climbed out and pushed the car back on its wheels had a quick look at the damage and carried on with my journey.

After that there followed some periods that I was quite ok, except being lucky in love. I was a lot on the move with my friends, and we did a lot of drinking unless it was your turn to drive. At a certain point I realized this was not the best thing to do in life and I started studying again. During this period I met my wife. All of a sudden I found luck.

But not for long, as we just bought a house, I lost my job (not my own fault) and after a while I found a job on a cruise ship, when I came home again I had to get used to the daily things again.


I applied for a job on a ferry, but the stress was bringing back bad memories from the past. When the firealarm went off I totally lost it. In my army days I got involved with the Herald of Free Enterprise disaster, so I was back home again. Half a year later I sailed again for the same company on a smaller ship on a different route and in a different job. This went on for a few years and I did some jobs in between as the ship was charterd out or sailing on an other ships route, while their ship was in dock.

When we bought this house and just had moved in, I slipped on the stairs just after we had put our oldest daughter to bed. I tumbled down and crashed into the wall. Next thing I remember that I was rushed into the hospital by ambulance. I had been unconscious for a while. I also fractured a thumb and had a brain contusion. After a week I still had trouble walking straight and I fell over to the right all the time. Furthermore I had trouble with mathematics and all my language skills were gone (Dutch, German and English were needed in my job.) I took me a bit more then 1½ year to get my language skill back to a normal level.

In the mean time I had became a lorry driver but I was missing the life at sea. At a certain point I had to stop with my job distribution for the Heineken company as the left side of my body was starting to give trouble. Extreme heavy pains where knocking me out, when I lifted a barrel of beer. Which had never been a problem at all, but now it felt that I had some broken ribs. I was diagnosed with costocohondritis (Tietze syndrome) from that moment I was forced to do an office job.

After a while I was sailing again with my old company as a receptionist. I really enjoyed what I was doing but all of a sudden my full body gave up on me. After a few months in the medical tredmill I got the diagnose Fibromyalgia. The company laid me off and at the hospital they told me that I had to change my lifestyle. Well let me tell you this: I would stop working if I could afford it. (time for the lottery to stop by my door.) I really hope that no one needs to deal with the idiots that I am dealing with now. It is nearly two months now that they should have send me money from the state of Denmark. But these bloody *#%@#+ ?!? can not find my journal back. It is just a bureaucratic nightmare. I think that they should offer me and my family a free holiday to Denmark when this is all running, all inclusive of course.

Make a wish when you see a shooting star, I will take cover as I am affraid that I might get hit.

The Old Sailor,

Back to work

Dear Bloggers,

I developed fibromyalgia in januari 2007 when I was a 40-year-old receptionist working under extreme pressure and deadlines for a busy ferry company.

I averaged about 6-7 hours of sleep a night due to job stress, coupled with a life-long tendency toward insomnia.

I had also been under a great deal of personal stress for many years.

I would try to catch up my rest by sleeping 7-8 hours a night on the days that I was free, but the family life would not let me.

After a few years of this, I suddenly developed a pain in my lower back and especially shooting pains in my arms, hands and fingers.

My muscles felt tight and inflamed, and I was physically exhausted.

I wanted to work less in the near future and change to another job, but I had to keep on working to pay the bills.
I had no idea what was wrong with me.

I consulted many doctors--neurologists, orthomolecure therapists, fysiotherapists, chiropractors, rheumatologists, doctors of internal medicine, etc. Each one had a different theory: fibrositis, arthroses, sarcodiosis, pinched nerves, lyme disease, and even a hypothyroid condition.

The final diagnosis was fibromyalgia.

I had tenderness at 13 of the 18 trigger points characteristic of fibromyalgia, and stiffness and pain in my muscles.

At times I also had muscle tremors and herendously tired.

I felt totally burned out.

The doctors prescribed drugs, anti-inflammatories, muscle relaxants and painkillers but nothing really helped.

It was very frustrating!

I tried taking vitamins by changing my diet and exercising.

The vitamins helped me feel stronger, but the debilitating pain and stiffness of fibromyalgia still persisted.

Exercise actually made the condition worse sometimes but I was told to keep in motion--it felt like my muscles were tearing.

Even mild stretching, such as reaching too far into a cupboard, would cause me days of misery.

I was puzzled that I even had pain when my body was completely at rest!
Since it was unlike any other pain I had ever experienced, I found it hard to describe to others. Sometimes it was a sharp stabbing sensation, at other times a dull, miserable ache that wore me down.

It felt like the nerves and muscles were irritated and inflamed.

Because I looked healthy and kept up with my responsibilities, a lot of people didn't believe that I was suffering like I was.

Some even said it was "all in my head" or that I was lazy and trying to avoid work!

Needless to say, this increased my emotional stress levels!

Unfortunately, not much was known about fibromyalgia in my surroundings but internet could answer a lot of questions but some parts that you read will make you more sick.
I started losing the feeling of "connection" between my brain and my hands.

I would think I was going to drop something, when actually I would be gripping it very tightly. Also, if any weight was put on my arms, such as carrying grocery bags, lifting a heavy pot from the stove, having a child pull on my arm, etc., I would get terrible pains in my arms that would last for the whole day.

I felt practically disabled!

So many activities I never gave a second thought to now became obstacles throughout the day!

As a "Type-A, take-charge, high-achieving" kind of person, these drastic changes in my life were hard to accept.

It was a nightmarish time financially as well.

I tried physical therapy, cortisone shots, massage therapy and chiropractic to relieve my fibromyalgia.

Of all the remedies I tried, massage helped the most, but it was very expensive and the relief I obtained ended almost as soon as the massage did! My muscles were drawn up and tight, especially in my upper back and neck.

Massage therapists told me that my muscles felt "hard." My whole body was painful and stiff. If I sat for more than 10 or 15 minutes, I could barely get up again because of the pain and stiffness in my knees and legs. I felt like a very old person. I learned to sleep on my back because of chronic pain in both shoulders.

After a couple of months at home on sick leave and many visits to the hospital, It is time to go back to work now.

But question is can I handle it and can they get used to the new me.

The same person dealing in a different way with his energy levels.

The fibromyalgia will flare up or ease off depending on how much sleep I was getting or how much stress I will be under.

I feel pain and tired much of the time and also suffer from insomnia, but I am not the person that sits down and feels depressed.

I actually became more and more aware of what my body is still capable to do.

I had a lot of trouble with insomnia.

Usually one bad night's sleep led to 4 or 5 more nights of even worse sleep!

I tried a lot of remedies, and a chinese method learned me how to relax eventhough I did hardly sleep, the body came to a full rest.

And I had enough energy the next day.
The physical pain of fibromyalgia is bad enough, but the fatigue wore me down mentally as well. For months I was so physically weak that even a normal car trip would completely exhaust me and I would fall asleep on the couch!

Also, the pain sensations were very severe at these times, but I was not willing to give up and let this sickness influence my mind.

Al my back up sources were depleted from years of sleeping problems.

And that was where my body simply started to hit the brakes.
In order to cope, I learned to reduce all forms of stress in my life and to curtail any activities that would make the fibromyalgia worse.

I came to accept the fact that I could no longer participate in many of the activities that I would normally do but that I had to regulate my sources.

I had previously enjoyed, and I eventually adapted to a limited lifestyle.

The carefree days of good health seemed over for good, and I had given up any hope of a "cure" for my fibromyalgia.

I don’t believe there is a cure for it, but if you believe in yourself you can learn how to deal positive with the pain.

The Old Sailor,

Open Letter about Fibromyalgia

Dear Bloggers,

As I became active on a Dutch forum about FM, I found this letter and had the feeling that I should share this with you. Just to get you a better picture of what I feel. Do not worry I have translated the letter from Dutch to English so do not hang me up on small spellingmistakes.

And as we all know that life is brutal, but still there is no reason to let your head hang down.

This how I look at real friends: a friend is someone who dances with you in the sunlight and walks beside you in the shadow as that is all what live is about.

Open letter to people who do not have Fibromyalgia:

If you have Fibromyalgia, it means many things change and that many of these things are invisible.

It is not visible as a paraplegic.

Most people do not understand even a small bit of what it is to have FM and living with the effects it has on your life.

People who think that they understand what you have are normally poorly informed.

To be informed, and who can understand? .......

There are certain things from me I want you to understand before you condemn me ...

Please understand that being sick does not mean that I am no man or woman anymore.

Most of the day I spend in a lot of pain and exhaustion, and if you visit often, I am not very pleasant company, but I am still in this body.

I am still winding myself up about work and my family and friends, and usually I love that you also talk about the things that are concerning you.

Please understand the difference between "happy" and "healthy".

If you have flu you probably feel miserable, but I have been sick for many years.

I can not always feel miserable, in fact I work hard, not to be miserable.

So when you talk to me and I sound happy, it means that I'm happy.

That is all.

It does not mean that I have no pain or being terribly tired, or that I am getting better, or whatever.

Please do not say: "Oh, you already sound better!".

I do not sound better, I sound cheerful.

If you want to say something about it, you can.

Understand well that being able to stand for 10 minutes does not mean that I can also stand for 20 minutes, or an hour.

And since I could stand 30 minutes yesterday does not mean that I can do the same today.

With many diseases you are either paralyzed, or you can move.

This disease is more complicated.

Everything described above also applies to "sit", "walk", "believe", "thinking of others" and so on ...

It applies to everything.

That is what Fibromyalgia does.

Please understand that Fibromyalgia is variable.

It is possible (for me that is normal) that one day I can walk large pieces and back while I have trouble the other day just to reach the kitchen.

Do not attack me with: "But yesterday you did!" if you want me to do something, ask if I can.

In a similar situation, maybe at the last moment I will cancel an appointment, if that happens do not to take it personally.

Please understand me that “going out and doing things” not make me feel better and I often feel a lot worse.

If you tell me that I should move a lot or that I should lose weight (or even gain), or I should buy a training device, even to go to gym or something like that ... then I will do that.

I am emotionally hurt (and I need to cry sometimes) and that is not good ... all these things I would do if I could, I would like to do and you know it?

I work for myself with my doctor and physiotherapist, and I do all the exercises I should do in my situation.

Another decision that I really acts is: "You have only yourself but harder to tackle ..."

It is clear that I work for myself with my doctor and physiotherapist, and I do all the exercises I should do in my situation.

Another judgement that I really hate is: "You have to be a bit harder on yourself..."

It is clear that Fibromyalgia has to deal directly with the muscles and because my muscles are not developping the same way as yours , I distroy more than I do good when I follow your advice and it will cost me days or weeks to return where I was and to recover from even a single activity.

Please understand that if I say I need to have a seat.

Too lie down or need pillows, and that I need it now - it can not be postponed because there is no time for it, or that I am not at home. (or for any other reason).

Fibromyalgia does not care about that.

If you have a good idea for me, than keep it for yourself.

It is not something that I do not appreciate, and it is not because I do not want to be better.

It is all because everyone has a good idea for me.

In the beginning I did everything that I was advised and gave it a try, but I realized I was consuming so much energy to try things that I made myself only more ill, and not better.

If there would be anything that all Fibromyalgia patients could help or could cure them, then all persons with Fibromyalgia would have known.

There is a global network (Internet and others) between people with Fibromyalgia, if there would be something that might cure us, we would know.

If you have read everything and you want to give me a good suggestion, please do so, but do not expect me that I immediately go after it and give it a try straight away.

I will then consider it and discuss with my doctor. In many different ways I depend you - people who are not sick - I need you to visit me when I'm sick or when I can not go out myself... Sometimes I need your help when I need to do some shopping, cooking or housekeeping.

I'll probably might even need your help to drive me to the doctor or physiotherapist I need you also in a different way ..... you are my link to the outside world ... if you will not visit me then I'll maybe not see you that often. ... and, as much as possible, I need it that you will try to understand me.

The Old Sailor,

They call me fibromyalgia

Dear Bloggers,

Let me introduce you to my new companion in life.
I found this on the Dutch fibromyalgia site and translate it, as it comes quite close to my feelings.

Now they gave it a name and now the fight against it finally begins.

Hello,

I am an invisible disease.

I am now with you for the rest of your life.

Others around you to see me, but your body feels me.

I can attack you when and how I want.

Also I can take care of you by giving severe pain attacks.

And if I'm in a good mood I can even ensure that you have pain.

Remember that you did a lot with your energy and had a lot of fun?

Well, I took that energy away from you and gave you fatigue instead.

You now also trying to have fun, but I get you out of your sleep and give you a headache in return!

You know what I can do more?

I can ensure that you vibrate inside and you are cold or hot when everyone feels normal.

I can also make you anxious and depressed.

You did not ask for me but I have chosen you.

Why?

Perhaps by a trauma (car- crash/whiplash, surgery....?) That you had.

Or by a virus that you caught somewhere.

Anyway, I am here now and I will stay!

I hear you went to a doctor, to get rid of me.

Hahaha, I rolling over the floor and laugh!

Keep on trying!

You will be going to many doctors if you finally can get rid of me.

Also you will probably be packed with pills: sleeping pills, vitamins, painkillers, energy pills?

You will get massages and sometimes they will tell you that you are anxious and depressed. They will tell you that if you take pills on time, and do your exercises well, I will go away.

But the worst is that sometimes you will not be taken serious, when you are yelling at the doctor that you do'nt have a normal life anymore.

Your family, friends and colleagues will all listen to you until they are sick and tired of knowing how I let you suffer and that I am a disease from hell.

Some will say: "You just have a bad day" or "Yes, you can not do anything more that you could ten years ago."

They are not you then say: "Ten years ago? Ten days ago!"

Also, some will talk behind your back while you slowly get the feeling that you are losing your self-respect.
Still you try, while you know, to explain them so they would understand.

This can be especially difficult if you have one “normal” person where you are talking to, because sometimes you'll suddenly forget what you wanted to say.... The only people who really understand you and support you are, the people in whose body I am also present.

And unfortunately, you will also discover that your true friends you can count on 1 hand.

But the ones who are there are those, which are there for you REALLY!

The Old Sailor,

Slowly we are getting somewhere!

Dear Bloggers,

Do I have to call myself a “sick” man?
I went to the rheumatologist this week and it was getting a bit closer to a verdict, at least it is not rheuma, but on the x-ray of my lungs there were some doubts and I will be send to the next specialist.
On the second of June, I have an appointment with the lung specialist.
To do some more tests and hopefully to elimenate the Besnier - Boeck disease.
This disease is also quite good in hiding, although if you get the granulomas on your skin they are pretty obvious, I would say.
I have just been wandering why this disease is so hard to figure out, as we are having so much knowledge in this western society.
Oh... for crying out loud can somebody tell me what is going on.
I found the following item on the wikipedia site.(this is pretty depressing, nice stuff for rainy days.)





Sarcoidosis (sarcoid = sarcoma-like, -osis = a process), also called sarcoid or Besnier-Boeck disease, is a multisystem disorder characterized by non-caseating granulomas (small inflammatory nodules). The cause of the disease is still unknown. Virtually any organ can be affected; however, granulomas most often appear in the lungs or the lymph nodes. Symptoms usually appear gradually but can occasionally appear suddenly. The clinical course generally varies and ranges from asymptomatic disease to a debilitating chronic condition that may lead to death.





The cases that it leads to death are not even 5% but it seems to be difficult to diagnose it.
Maybe it might be more positive if they can elimenate sarcoidosis it will be diagnosed as fibromyalgia, a very painful but not destructive disease.
(anyway I will be placed on a course together with my wife how to deal with the pain and how to deal with practical things in life.)
Also for my partner is this a complete turn around and she will have to learn to help me in so many different ways.
As it will be difficult for the both of us to deal with the fact that I cannot do certain things in life anymore and she has to offer a helping hand.





Fibromyalgia (new lat., fibro- fibrous tissue, Gk. myo- muscle, Gk. algos- pain), meaning muscle and connective tissue pain (also referred to as FM or FMS), is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch (tactile allodynia).[1] Other core features of the disorder include debilitating fatigue, sleep disturbance, and joint stiffness.

I was also send to dietician to loose some weight and get another style and rythm of eating.
As soon as they have diagnosed what it is, I will be send to a fysiotherapist to learn to move in the right way and have breaks in between and to force myself to rest, eventhough I have a good day.





It is great to finally know what it might be, but on the other hand it is scarey.
Thank god the sun is shining on this cloudy medical future.
Well let me end with the following qoutes:"That pain doesn't hurt me, neither does life, it doesn't matter what happens, I will survive!" and "I think what messes us up the most is that we all have this perfect picture of the way things should be.. So turn your face to the sun and the shadows will fall behind you."

The Old Sailor,

What is the cause?

Dear Bloggers,

I am quite a humorous person and not really that old, ok I have a few grey hares but still I do not except that people stand up for me or feel sorry for me. It is just that my body is refusing to work with me. This means that I have to stop working for a while and that is even more painful for me. The frustrating part is that giving a diagnose is not that easy. I checked on several sites and forums and my goodness there are a lot of sad stories (for some it took more than 4 years to find a suitable diagnose.)






The following parts I found on the internet and now me and the doctors have to pick one of the diagnoses or what ?









Fibromyalgia is considered to be a syndrome—a set of symptoms that occur together but do not have a known cause. There are theories as to what may cause it, but there is not enough evidence to support any single theory. People—especially women—who have a family member with fibromyalgia are more likely to develop it themselves. It has been recognized as a medical disorder only since the 1980s.
Some theories suggest that fibromyalgia may be linked to:
• Oversensitive nerve cells in the spinal cord and brain. Oversensitivity may be due to changes in chemicals in the brain or spinal cord that regulate pain. As a result, the person senses pain more easily, and widespread muscle pain occurs.
• An imbalance in the brain chemicals that control mood, which results in a lowered tolerance for pain and may also cause an unrestful sleep cycle and fatigue. Once this happens, a person becomes less physically active, and the muscles and tissues become more sensitive and painful and more easily irritated.
• An imbalance of hormones such as cortisol and growth hormone. Their release is controlled by the pituitary gland and the hypothalamus. Imbalances of these hormones can result in fatigue, mood changes, concentration and memory difficulties, a lowered tolerance for pain, and other symptoms.
• A disturbance in the deep phase of sleep. Some chemicals, such as growth hormone, are secreted by the body during this phase of sleep. If sleep is disrupted, the body produces less of the hormone. Disturbed sleep may be both a cause and an effect of the pain of fibromyalgia.
Many people connect the beginning of their fibromyalgia symptoms to a certain event. These events can include an illness such as the flu, an injury or surgery, or emotional trauma and stress. An event of this type combined with other factors, such as increased sensitivity to pain and an ongoing sleep disturbance, may lead to fibromyalgia syndrome in some people.





Or is it Lyme disease?





Lyme Disease Symptoms
• The initial infection can occur with minimal or no symptoms. But many people experience a flulike primary illness or a characteristic rash several days to a few weeks following a tick bite.
• The flulike illness usually occurs in the warm weather months when flu (influenza) does not occur.
• The rash is a red rash that grows in size daily. It is called erythema migrans.
The U.S. Centers for Disease Control and Prevention (CDC) defines this rash as a skin lesion that typically begins as a red spot and expands over a period of days to weeks to form a large round lesion, at least 5 cm (about 2 inches) across. A red circular spot which begins within hours and is smaller is usually a reaction to the tick bite.
When the rash occurs at the site of the tick bite, it is called a primary lesion. Multiple secondary lesions can occur that are a reaction to the infection and are not due to multiple tick bites. All of these lesions can grow up to the to the size of a football. This growing in size is characteristic of Lyme disease.
• Left untreated, symptoms of the primary illness usually will go away on their own within a few weeks although the rash may reoccur.
• Later, additional symptoms may occur. The organs affected later may lead to the following conditions:
Facial palsy is paralysis of the facial nerve that causes the facial muscles to be uneven (This may get better without treatment.)
Nerve inflammation causes numbness and tingling in the arms or legs
Intermittent episodes of arthritis last about a week and usually involve the knee or wrist. These may recur over periods of weeks to months, and if the Lyme disease remains untreated, about 10% of people who have these episodes develop persistent arthritis in the knee. Occasionally, people with Lyme disease can present with an acute arthritis in the knee without a clear history of a rash or other joint complaints.
Inflammation of the heart (carditis) results in irregularities in heart rhythm.


I am all at sea ......................... lalalala, long live the painkillers.





All in all I am fitting nearly in both pictures, is there anybody that is not a 100% sure of what it is. But it is time to hurry with at least a treatment.

The Old Sailor,

Already today my body has become my enemy

Dear bloggers,

Yesterday was the day that I had to go to the hospital; hopefully they will come soon with some results as living with pain 24/7 is unbearable.
At least that is what I think.
As all the results of yesterdays examinations brought absolutely nothing.
My day at the hospital started at 09:30 and ended at 17:00 well I was fully in a sarcastic mood when we went home.
Only a lot of frustration was what they could offer me, and for **** sake it is eating me alive.



If they can at least tell me what my future will bring me, and even if it means that I can work only a few days a week.
It will give me something to struggle with.

Well this how my day looks like, when I am home.
I love my family and I know they love me.
A little understanding would go a long way.
It is 6:15 am. I stumble towards the bathroom as hot water is a relief and helps me to get in motion.
Already today my body has become my enemy.
Some days are worse than others, and I have not held myself back enough lately.
I have been enjoying my kid's playing outdoors too much.



The pain bothers me all night long every night, all day every day.
No position is comfortable.
I keep moving and trying to position my body so it won’t hurt so badly.
The alarm goes off, I wasn't asleep but it still surprises me.
When I stand PAIN! My feet hurt so badly, and it just goes on up my body like a tidal wave.
Sometimes it brings tears to my eyes.
I try hard not to let any one see me when it is this bad.
Just my wife but she is most of the time sound asleep.
Some days are worse and this day is worse.
I just keep moving, walking praying my muscles and joints will loosen up enough for me to enjoy the morning with my daughters.



I want to take my muscle relaxer and a paracetamol when they leave.
Words cannot describe what I feel; is it called fibromyalgia or polymyalgia or is it Lyme disease?
What ever name it is given it has had me in its grip since this winter.
Sometimes I don't know what causes it.
It takes me by surprise I may make a soft grunt or moan.



I am feeling horrible and it is coming out as I am grumpy and burst out in anger if they are not listening.
I know it is wrong to yell at the ones that you love.
But god it is difficult sometimes.
You know that no one wants to hear you moan or complaining.
The pain has control, I am exhausted, my whole body hurts, and even my eyes feel dry and gritty.
It feels as if my bones are cutting through my muscles, tendons and skin.
It feels as if I am metamorphosing, my muscles can no longer support my bones and are melting away.



I feel I am turning into something ugly; I don't want to go out unless I absolutely have too.
It hurts and I am so tired of this PAIN second after second, minute after minute, hour after hour, week after week.
I cannot keep up with housework; the rare visitor probably thinks that I am lazy.
I see the looks I get. I am not lazy. I am disabled (ugly word).



I work still a full time job at the receptiondesk of a ferry, raising together with my wife two daughters.
I did all of this at the same time.
I was strong, the busier I was the more I loved it, but all of a sudden I had to take it easy and it was the start of a life full of pain.
I say this to people who don't have Acute Chronic Pain; do not judge me.
I may look normal enough if you don't look close.

But know this you are fortunate.
I am in constant, unending, unrelenting PAIN.
It rules my life, my family’s life.
It seems I only exist at times.
My empathy to all of you who suffer as I do.

It took me a while too write this story, but it is worth it as my life is at certain times pretty frustrating.

The Old Sailor,