8. The CFS clinic.

The Endocrinologist consultant who diagnosed my CFS referred me to a new CFS clinic that had just opened at my local hospital. I had to wait several months for an appointment and finally saw a Physiotherapist and a Psychologist who then decided that they could not provide any specific help; they simply referred me to their Occupational Therapist colleague.

Again I was going to have to wait several months before seeing the Occupational Therapist. So I decided to also do further research while waiting.

In consultation with my doctor I decided to stop taking the Amitriptyline as it had not solved my sinus congestion problem.

I am somewhat skeptical about natural medicine remedies etc, probably because of my analytical background I like to know there is a scientific proven benefit to things I take or try. However, I was becoming more willing to try anything that might help, so when my research suggested acupuncture might help I discussed this with my doctor. His reaction was like mine that it would do no harm to give it a try and initially he referred me to a physiotherapist at a local hospital who did acupuncture. The physiotherapist contacted me and indicated that she only used acupuncture to help some of her patients’ pain problems and had never used it to help with CFS so she felt I should find a more suitable acupuncturist. Fortunately I managed to get a list of local acupuncturists and on the list was a local GP (general practitioner) doctor who also provided an acupuncture clinic.

I saw this doctor and after an initial consultation he gave me four acupuncture treatments which meant I had needles placed in my feet, hands and head. During this period I felt no benefit and may have felt a bit worse, so it was decided that I was obviously not getting any help from this treatment. Another blind alley, but I was still determined to keep on looking for a solution.

Finally in January of 2006 I saw the Occupational Therapist who after discussing things with me, suggested that I kept a log of my activities and noted when I became fatigued. The aim was to determine what I could do and then try and only ever go to 75% of these activities i.e. never to get to the point of being fatigued. I tried to do this but found it difficult to determine levels as things seemed so variable. I was also given a relaxation/meditation CD, which I should use daily to help me relax.

I continued with the logging idea mentioned above but changed what and how I did the actual logging. Rather than writing down what I did at different times of the day, which to me just seemed to end up with pages of words from which it was difficult to see any trends or patterns, I initially simply produced a chart where there was a column for each day and the column was divided into hours. I then used colours to just show my activities, so:

• Red - indicated physical activity such as doing a job around the house or walking etc, i.e. not sitting around.
• Green – indicated mental activity like watching TV, reading, working on PC i.e. sitting around.
• Yellow – indicated resting such as just laying down, perhaps listening to my relaxation CD etc.
• Blue – indicated actual periods of sleep.

This was initially useful in showing me that my worst times were the mornings and that I might go through phases when I might sleep more in the mornings one week compared to the next.

I then felt I needed more data from these charts so I changed it so that not only was there a column for the day as described above, but there were also columns for my main symptoms of Headache, Tinnitus and Tiredness with a final column used to record if and what medication I took. In the symptom columns I simply recorded a value in the range 0 to 10 (where 0 meant no symptom and 10 meant the symptom were very bad). One of the things I gained from this initially was the fact that I could never score 0 for headaches and I had never fully realised that I always had some level of headache albeit very mild sometimes. This chart proved to be useful later as I tried other medication in helping to determine if they had helped improve things.

Go to Part9. Yet more research suggests something from my past.

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?