7. Finally a diagnosis of CFS.

I started to do more research of my own on the internet and in mid 2005 I went to my doctor asking if my condition could be Chronic Fatigue Syndrome or Adrenal Fatigue. I was referred back to the Endocrinologist consultant I had seen earlier and at the same time was put on a low dose of Amitriptyline another antidepressant. The dose of Amitriptyline was well below the minimum prescribed if you were taking it for depression and the reason I was taking it was for one of its side effects, which was to dry out my sinuses.

After another test of my testosterone levels and for Adrenal fatigue the Endocrinologist consultant finally gave a diagnosis of Chronic Fatigue Syndrome. As I am sure others would testify, finally having a diagnosis is good in that at last others agree there is something wrong with you.

However, if you are familiar with Chronic Fatigue Syndrome you will know there is no specific test for the condition; it is basically a diagnosis arrived at by excluding other possibilities. You may also know that having been given the diagnosis of CFS that does not mean that now there is a course of treatment to be followed to cure you, as currently there is no specific cure for CFS.

One thing I feel sure about is had I not done my own research and done nothing, I would still either be undiagnosed or a diagnosis would have been a lot longer in coming. So if you are in a similar situation I would strongly suggests that you or someone close to you does further research to keep offering suggestions or questions to your own doctor. It also helps as in my case that your doctor should be open to such suggestions or questions.

Go to Part8. The CFS clinic.

6. I was now willing to try almost anything!

During the summer and autumn of 2004 I tried a number of things suggested by my doctor. The first was a low dose of antidepressants called Fluoxetine to improve my mood, but after only a week on these tablets I had to stop taking them due to their side effects. I then tried counselling sessions, one session a week for 3 weeks; at the end of which I had the impression that the person I was seeing felt I had some real physical ailment and not a psychological problem. My doctor then put me on another antidepressant called Citalopram which improved my mood but made me even more tired so after a couple of months I stopped taking this medication.

Another six months slips by with only a consultation with another specialist regarding my ongoing sinus congestion and Tinnitus, which resulted in nothing new being found or suggested.

I realise that my own doctor had run out of suggestions and that no one else appeared to be going to help me, so I had better try and help myself as I was not willing to remain as I was, as part of me still wanted to do more with my life and not just sleep it away.

Go to Part7. Finally a diagnosis of CFS.

5. A process of elimination, although I didn’t know it at the time!

At the start of 2003 I was still not working and now I was also starting to feel fatigued for no obvious reason and thought my brain was not working as well as it had done in the past, i.e. concentration etc. During the first half of 2003 I saw two Ear, Nose and Throat consultants, and had a CT scan, but neither consultant could find the problem causing my stuffed up sinus and Tinnitus. Just in case it was some form of sinus infection I took a course of antibiotics, but this did not help clear my stuffy head.

I tried inhaling vapour and nasal douching i.e. spraying a special salt water solution up my nose to keep clearing it out, all with no dramatic improvement.

One night my partner made a comment that my fatigue symptoms etc sounded a bit like the menopause in women that she had read about, which I initially thought was a silly suggestion. However, when I did a bit of research on the internet I found to my surprise there was something called Andropause, which some thought occurred in men as a result of a lowering of their testosterone levels over time.

So I had my doctor do some more blood tests and my testosterone level was a bit low. However, my doctor was not sure if it was low enough to be a problem. My doctor therefore referred me to an Endocrinologist consultant who did his own tests, including an MRI scan of my head and indicated that my testosterone was at the lower end of what they considered to be the normal range. However, he decided that he would try me on a course of Testosterone Replacement Therapy (TRT) to see if that improved my symptoms.

I tried the TRT treatment for nearly a year, which was one injection per month. The TRT treatment lasted until about mid 2004. While there might have been a slight improvement as a result of this treatment, the consultant decided that there had not been a significant improvement in my symptoms and therefore this was not the cause of my problem, as I was still feeling fatigued.

I should perhaps explain that by this time my fatigue symptoms would be such that I would sleep for eight or more hours at night, get up and by the time I had finished my breakfast I would be feeling so tired I would have to go back to bed for another three or four hours sleep. I would then get up still feeling un-refreshed despite all of this sleep.

Go to Part6. I was now willing to try almost anything!

4. My plan?

My plan for mid 2002 was to spend a few weeks through the summer recharging my batteries and hopefully all would be well. During this time and probably because I was checking on my general health, I became aware of a bump in my groin area and it was confirmed that I had a hernia. So as I was not working it seemed logical to get it done as soon as possible and I also wondered if in some way this might have been part of my current health problem at that time.

My hernia operation went okay, the only problem was a slight concern about my blood pressure being a bit low during the operation and shortly afterwards. My recovery from the operation went basically as it should have done, but I was still feeling low and as if running on empty.

During November of 2002 I thought I was going to come down with a cold but all that happened was that I started having a stuffed up sinus and Tinnitus start on the right side of my head, both of which did not go away. By the end of 2002 I was starting to feel a bit worse.

The plan had obviously not worked as my batteries had not been recharged.

Go to Part5. A process of elimination, although I didn’t know it at the time!

3. When might my CFS have started?

One Friday evening in November of 2001, just as I was about to go home from work, I noticed that my hair on the right side of my head felt tender. I know that is an odd way to describe it, but at the time that is how it seemed to me. Just a light touch on my hair would be enough for me to have a strange sensation on my scalp, just on the right side of my head.

Over that weekend I started to feel unwell and by Monday morning I thought I could see some red bumps appearing on the right side of my head. I called up my doctor’s surgery and over the phone a doctor suggested it could be Shingles and that I should go straight to the surgery so the diagnosis could be confirmed.

At the surgery another doctor did indeed confirm it was Shingles. The doctor explained that Shingles was the re-emergence of the Chickenpox virus that I had when I was a child. Apparently the Chickenpox lies dormant at the base of nerve ends and is suppressed by your immune system, but as your immunity weakens due to time or stress of whatever, the virus can reappear. Apparently the fact that the red bumps were only on one side of my body, in my case the right side of my head, is a tell-tale sign and indicated that the virus it travelling up nerve fibre in just that area of your body.

I was given some antibiotics and for a week or more I was very unwell. Around my right eye became very swollen and I had red blisters along my right eyebrow and forehead. I looked like I had been in a fight. I had bad fever symptoms and on occasions felt chilled to the bone. Luckily I felt so ill I slept a lot of the time.

After two weeks I felt well enough to return to work, the blisters had disappeared and I found out later that I had been lucky that it had not affected my right eye.

So basically at that time I thought that was the end of the matter. In the following year 2002 I did start to notice that I was not feeling 100%. I described it later as if I was “running on empty” and noticed that I seemed to be a bit more emotional at times, for example if watching a sad film.

In the middle of 2002 I volunteered to take on even more work for the client I was doing work for on a freelance basis. In the space of about two to three weeks, while trying to get up to speed on the additional new work, I went from sleeping seven to eight hours a night with no problems, to sleeping less and less until I could not sleep at all. I went into work and explained what was going on and agreed to take a week off to recover. However, in that week things did not improve, I could not settle, I paced about the house rather than chilling out in front of the TV. I could not eat as well and in that week I lost a stone in weight.

At the end of the week it was obvious to me that something was wrong, but I did not know what it could be, but thought stress at work might be partly responsible. As I was approaching the end of my current contract period the client and I agreed that I would not renew my contract with them and that I would also terminate my current contract immediately. So I simply went in for one last day, handed over information on what I was currently working on and left.

Later looking back, this is when I believe my CFS started i.e. from the impact of the Shingles outbreak, although at that time I was not calling it CFS. In fact at that time I did not understand what was going on, as I had never experienced anything like it before.

Go to Part4. My Plan?

2. What is Chronic Fatigue Syndrome?

For those that are reading my blog and do not know what Chronic Fatigue Syndrome (CFS) is I will give you my quick overview of this topic.

Chronic Fatigue Syndrome (CFS) is also called:

• Myalgic Encephalomyelitis (ME)
• Post Viral Fatigue Syndrome (PVFS)
• Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)
• And there are other names.

The problem with CFS is its variability and the lack of any specific test for its diagnosis. It can come on suddenly, or as in my case, gradually. The symptoms can be varied such as:

• Severe exhaustion.
• Overwhelming fatigue after minimum effort.
• Un-refreshed sleep and sleep disturbance.
• Headaches.
• Painful muscles, weakness and aching joints.
• Muscle twitching.
• Mood swings.
• Fluctuations in body temperature.
• Tender swollen lymph glands (neck, armpits and groin).
• Intolerance to alcohol, certain medications and foods such as dairy or wheat.
• Sensitivity to chemicals and electricity.
• Poor concentration.

For some it can be very debilitating to the extent that they have to stay in bed most of the time.

In my case, as I indicated above, my symptoms came on gradually over a long period of time i.e. just over a year. My symptoms also changed over that period of time.

Initially I thought I might be a bit rundown as I described feeling as if I was “running on empty” and I also felt more emotional. Other symptoms and events occurred as I will explain later until I arrived at a point where I would have a full night’s sleep but wake up feeling like a zombie. I would then have to go back to bed after breakfast and sleep for several more hours, only to wake up still feeling un-refreshed. This was the worst it got for me, but I was not like this every day, as I indicated symptoms and their effects were very variable. But there was this constant problem of feeling low in energy, drive, motivation and general impaired mental ability.

Drive and motivation is something you normally never think of much, you just take it for granted as it has always been there, causing you to just get on with each day. When it is low or impaired for some reason it is very frustrating, because you still want to get on with things but it now takes so much more effort. Perhaps you have been compensating by using more and more effort but now even the energy for effort has run low.

Go to Part3. When might my CFS have started?

1. What is this all about?

Hi and welcome to my blog, which I hope you will find useful and interesting.

I will start by saying why I am writing this blog, what I hope others will get from it and what I hope I might get from it in return.

I am writing this as someone who has been diagnosed with Chronic Fatigue Syndrome (CFS). I will be explaining how I believe I ended up with this condition, how it has affected me and how I am trying to deal with it at the moment.

I hope that as I tell my story others might say “that sounds like what I have”, or “that sound like what I am going through” and as a result perhaps they will consult their doctor to see if they have CFS. I say this because as you will read it took a long time for me to be diagnosed with CFS and it mainly came about as a result of my own persistence to find out what was wrong with me.

I also hope that others might be able to give me feedback if they believe they have CFS from the same cause as mine and will indicate if and what treatment or strategies etc are helping them to recover or deal with their CFS.

Go to Part2. What is Chronic Fatigue Syndrome?