Dark Chocolate helps CFS!

It has been a while since my last post as I have been spending most of my time working on my website business idea that I briefly mentioned in my “15. Not a cure but things are getting better.” post.

I also had a cold and my sinuses stuffiness problem returned after my cold had gone, so I started taking the very low dose of Nortriptyline again for a while and this appeared to help dry out the sinuses again.

So basically not much has change on my CFS health front.

I have tried to do some more research on CFS and my theory that Shingles is the cause for my CFS, but I still need to do more research on this topic. One thing I came across that I think I will be trying is a report titled “Chronic Fatigue Syndrome Symptoms Reduced By Dark Chocolate Consumption” ! The report suggest that dark chocolate which means chocolate with a high cocoa content and without any milk in it, may have an impact on levels of serotonin in the brain.

I will let you know how this test goes, but whatever the outcome it sounds like a good excuse to have some chocolate all be it dark chocolate.

16. What next?

I will continue with the current treatment I mentioned earlier, but I will also continue to research other ways in which I might reduce my Post Herpetic Neuralgia symptoms or somehow repair or sooth my upset or damaged Trigeminal nerve. I will also keep on researching Chronic Fatigue Syndrome (CFS) so that I can try and keep up to date with any new discoveries etc on this topic.

I am also interested in finding out more about the Hypothalamus and the surrounding area of the brain. I believe it may well become apparent that it is some impact or change on the Hypothalamus area of the brain that causes changes in the equilibrium of our systems and hence CFS. As I indicated earlier it is the Hypothalamus that controls body temperature, hunger, thirst and circadian cycles i.e. the sleeping and waking cycle. As these are things that change when you have CFS (i.e. I slept and sweated a lot etc) it seems reasonable that this could be a potential area for the problem.

I have read of a treatment, which appears to suggest that via just counselling it is possible to retrain or reset the Hypothalamus to its correct settings. But as there have been no clinical double blind trials of such a treatment I am reluctant to part with money to give it a try. There are many ads out there stating that they have the treatment or drug for the CFS condition, that it would be easy to waste a lot of money for no benefit.

So I would be interested to hear from anyone who has gone through or thinks they are going through the same story as mine i.e. CFS from Shingles. I would be particularly interested in hearing about any treatments that have been successful.

I will try and add more posts to this blog over time to keep you updated on progress, but there may well be long periods between posts as this could still be a long slow journey.

Hope you found/find this blog interesting and useful and if you are a CFS sufferer don’t give up keep believing things are going to get better.

15. Not a cure but things are getting better.

It is now late summer 2007. I am continuing with my medication for PHN and in turn I see an improvement in my CFS symptoms.

I now only take Gabapentin and Tramadol three times a day and have stopped the Nortriptyline as I could not detect any benefit on my symptoms.

I rarely sleep in the day and can work for reasonable periods on my computer at home.

I am trying out some ideas for making some money via the internet. I read a book called “The Super Affiliate Handbook: How I Made $436,797 in One Year Selling Other People's Stuff Online.”. This book gave me some ideas as to how I might make money on the internet, so eventually I bought some web hosting (if you are interested click the following to take a look at Lunarpages basic web hosting plan) so I could try out some ideas and learn more.

Also as it is just me trying out these internet business ideas I can go at my own pace and keep the effort and stress low.

I already have a website setup and have been learning a lot, which is one of the things I enjoy.

This is not meant to be a quick get rich activity. My initial goal is to cover any costs involved with hopefully a little extra cash coming in, but time will tell.

So as I indicated at the start of my blog I wanted to explain what happened to me, how it took a long time to get a diagnosis of Chronic Fatigue Syndrome (CFS) and how it would have been easy just to accept that nothing could be done and possibly just get forgotten about by my doctor.

It has been my own determination not to accept that nothing can be done for my Chronic Fatigue Syndrome other than learning to just live within my CFS limits, that has resulted in me finding what looks like the most likely cause of my CFS i.e. Post Herpetic Neuralgia (PHN) from Shingles. Having found this likely cause I then researched and pursued the treatment for Post Herpetic Neuralgia as a potential treatment for my CFS.

It is true this has not resulted in an overnight cure but I believe I have made more progress in this last year because of the treatment I am following. I believe the reason it is not an overnight cure is because I still have the ongoing problem that my Trigeminal nerve is still upset or damaged from the outbreak of Shingles.

Go to Part16 What next?

14. More progress, I did some work!

In November 2006 I started taking the three drugs Gabapentin, Tramadol and Nortriptyline for Post Herpetic Neuralgia. Over the following weeks I modified the dosage of each drug I was taking to find the minimum amount I could take for the maximum benefit. This was not an easy process as things changed slowly (no overnight cure) but I believed I was making progress. I used my charts that I mentioned before to help me decide if the changes in the drug dosages were helping or not.

As you may recall I mentioned that due to my ill health I had been unable to work, so I decided to do some research to see if I could earn some money via the internet. As a result of this research in mid December 2006 I started to do some part-time work, helping someone I had been introduced to who was trying to develop a website for one of their clients. This was ideal for me as it was to be part-time work I could do mostly from home using the internet.

In the end the project became more complex and had a number of technical problems which meant I worked on it more and for longer than I had anticipated, but I did it!

This piece of work proved very useful as it showed me that I could do some useful work, but it also showed me that I was still not well enough to consider going back to fulltime work. I also noticed that any stress also made my symptoms worsen slightly.

So although I knew I could do some useful work, I also knew it was going to be difficult to find suitable part-time stress free work.

This is why I returned to my idea of trying to see if I could make money from the internet.

Go to Part15. Not a cure but things are getting better.

13. My suggested way forward.

From my research on Post Herpetic Neuralgia I found a very useful medical journal article about its possible treatments. One of the main points the article made was that it was rare for patients to respond to a single therapy and that a simultaneous multi drug approach would be more successful.

I therefore went to my doctor with my hypothesis and the article information and discussed my findings and asked that I be prescribed the medication to try the multi drug approach described in the article.

My doctor certainly appeared to consider that my explanation as to why I was suffering from CFS was a reasonable theory. However my doctor was initially reluctant to prescribe all three drugs at once, indicating that we would not know which were helping and also there was the problem that the strong pain killer Tramadol mentioned in the article is an Opioid based drug and so has the potential to become addictive. I persisted pointing out that by that time I had already not worked for four years, so perhaps a more radical action was required and by now my doctor should know that I am logical and sensible about taking medication.

He agreed and prescribed the following three drugs:-

Gabapentin which I was already taking and appeared to be improving things for me slightly.

Tramadol is a strong (Opioid based) painkiller.

Amitriptyline is an antidepressant which I had already tried on its own without much improvement.

My doctor indicated that I should start taking just the Tramadol with the Gabapentin tablets I was already taking and see how I got on with these tablets for a week or so and then also start taking Amitriptyline. In this way I would at least know which drug may have caused any side effects.

We also agreed how many of each type of tablets I could take and how I could try varying the dose of each tablet one at a time in an attempt to find the best combination for me.

When I started taking the Amitriptyline tablet, which was just one very low dose at night, I noticed that I felt tired the next day. So my doctor prescribed Nortriptyline another antidepressant which had been shown to help relieve PHN.

Go to Part14. More progress, I did some work!

12. My own hypothesis.

My research of Post Hepatic Neuralgia indicated that in my case the Shingles outbreak would have travelled along the Trigeminal nerve on the upper right side of my head. It is the disruption of the Trigeminal nerve due to the progress of the Shingles virus, which can give long term severe pain from the nerve damage that is caused.

On what might be an unrelated track of my research I found out that people with Cluster Headaches, which I believe also involves the Trigeminal nerve and a part of the brain called the Hypothalamus, experienced nasal discharge on the side of their head where their headaches occur. So my reasoning went that perhaps the disruption to my Trigeminal nerve is causing the sinus stuffiness and headaches I have on the right side of my head.

I also read that the Modafinil drug I had tried without success, which had made my headaches and tinnitus worse, is thought to act upon the Hypothalamus.

My understanding is that the Hypothalamus is a small area at the base of the brain. It links the nervous system to the endocrine system via the pituitary gland, which basically means it is the area that allows the nervous system to send out signals via hormones (i.e. the endocrine) system. It is the Hypothalamus that controls body temperature, hunger, thirst and circadian cycles i.e. the sleeping and waking cycle.

So the following is my suggested hypothesis for my condition:-

1. I had Shingles on the right side of my head.
2. The Shingles virus has probably upset or damaged my Trigeminal nerve on the right side of my head. I still have some odd sensations on the scalp and forehead on the right side which I believe are from the Shingles outbreak.
3. A consultant neurologist has diagnosed mild Post Herpetic Neuralgia as a result of my Shingles.
4. The upset/damaged Trigeminal nerve is possibly causing/triggering the discharge in my right sinuses causing the stuffiness in my sinuses on that side.
5. The upset/damaged Trigeminal nerve is possibly causing/triggering the headaches I am having on the right side of my head.
6. The upset/damaged Trigeminal nerve is possibly causing/triggering some reaction in my Hypothalamus and/or the surrounding area of the brain. I have symptoms of fatigue/tiredness and sweating that are things the Hypothalamus has control over.
7. Taking Modafinil, which is thought to work on the Hypothalamus made my headaches worst.
8. My testosterone levels might be lower than they used to be and the Hypothalamus via the Pituitary glad controls hormone levels. Perhaps a lowering of my testosterone level could be the reason why I feel more emotional at times.
9. My Tinnitus is on the right side of my head so perhaps somehow this might be related to my other symptoms, certainly when my headache gets worse my Tinnitus can get worse.

Go to Part13. My suggested way forward.

11. A possible turning point?

So there I was at the middle of 2006 with a diagnosis of CFS, four years of not working due to ill health and nothing other than relaxation instructions and advice, which was basically learn to live with it and it might improve over time.

I have this horrible feeling that at this point there might be many people with CFS that would just get forgotten about and left to try and cope as well as they can with their symptoms.

There were no suggestions from my doctor for anything else to try.

For me however, I was and am determined to find the cause of my CFS. My thinking is simple, if I have a problem then something must be causing it, don’t just live with it, find and fix the cause if it is possible.

I looked back over all the letters from the consultants and the research I had done to see what I could find. In the letter from the first Neurologist I had seen at the start of 2006 it had mentioned that I might be suffering from a mild form of Post Hepatic Neuralgia (PHN), as a result of my Shingles outbreak. In the letter the consultant suggested trying Amitriptyline or Gabapentin. I went back again to my doctor and discussed the comments made by the consultant and as I had already tried Amitriptyline we decided that I should try Gabapentin.

Gabapentin is an anticonvulsant which has been shown to relieve the pain of PHN.

I started taking Gabapentin and it took a while but I started to think I was seeing some improvement. My headache had not stopped but I thought my general mood had improved. I was also taking other normal headache tablets to try and totally eliminate my headaches without success. I continued taking Gabapentin for about two months, slightly varying the dose within the limits set by my doctor to try and find the level giving the most benefit. I used the daily charts I described earlier to try and help me gauge if changes in medication had improved things or not.

As I felt I was starting to see some improvement in my CFS condition due to my new medication, I decided to research Post Hepatic Neuralgia further.

Go to Part12. My own Hypothesis.

10. See how time just slips by!

So again a month or so later I went to see the Psychiatrist. After an hour’s consultation his conclusion was that I was not nuts (my words) and that he agreed I was suffering with CFS. Regarding the Modafinil drug, it turned out that he had not used it but would read up on it and write to my doctor about his findings and his recommendation for this drug.

Whenever I have seen any of these consultants, I have asked that they also send me a copy of the letter that they send to my doctor after each consultation. They seem happy to do this and it has helped me to feel in the loop, and if I had not done so I believe they would simply have just sent the letter to my doctor.

The letter came and confirmed what I had learnt from the consultation and also indicated that a trial of Modafinil would be a worthwhile experiment. Initially my doctor was reluctant to prescribe Modafinil due to its cost but we agreed a very small quantity might be worth a try. So I was given enough for two weeks. After one week on Modafinil I had to stop taking it as I was getting no benefit from it and it was making my headaches and tinnitus a lot worse.

Perhaps by now you can see how the weeks slip into months and the months slip into years, during all this process. Meanwhile there is no permanent improvement in my condition just periods when I might feel a bit better and then other times when I might feel a bit worse.

Go to Part11. A possible turning point?

9. Yet more research suggests something from my past.

Again I decided that I needed to do more to try and help myself to solve this fatigue problem, so I did further research. As a result of this research I arranged via my doctor to go and see a Neurologist Consultant to see if they had any views on whether my CFS could have been caused by my earlier episode of Shingles as I had read that CFS is thought to be brought on by some viruses. In fact CFS can also be referred to as Post Viral Fatigue Syndrome (PVFS).

There was also another surprising thing I discovered that I felt needed investigation, which was something called Post Polio Syndrome, which can give fatigue symptoms. This was interesting and news to me (and to my doctor who had never heard of Post Polio Syndrome) as I had contracted Polio when I was a child at age seven. Fortunately, if you can say it like that, my Polio was restricted to one leg. At no time in the past had anyone said to me that in later life this weakening of my leg or some other effect of having had Polio might give me other problems.

So it was surprising to read that it was also possible that the Polio virus could have travelled up the spinal core and damaged the brain, which in a young person would not show itself, but in later life might start to become apparent.

This is one of the problems of doing your own research; you have to be careful not to think you have everything wrong with you. That is why I only go to my doctor when I think I need some advice and why my doctor then referred me to the Neurologist Consultant to explore this possibility.

Polio is a very uncommon thing these days and many doctors have no direct experience of it or its long term effects. The Neurologist gave me a thorough examination and made the comment that I might be suffering from a mild form of Post Hepatic Neuralgia as a result of my Shingles outbreak due to the ongoing problems I was having on the right side of my head, which included ongoing headaches on that side of my head.

Regarding the Post Polio Syndrome question the Neurologist thought it was unlikely as there was no sign of any neurological problem, but the Neurologist referred me to another Neurologist who might have more experience of Post Polio Syndrome.

A month or so later I saw the second Neurologist who also gave me a thorough examination and also concluded that there was nothing to suggest that I was suffering from Post Polio Syndrome. The Neurologist decided that some other tests would be useful so another month or two went by and I then had a Lumber puncher, which is where they take some fluid from your spine, and an EEG, which is when they put all those electrodes on you head and analyse your brain waves. The actual procedures were not a problem, the only thing you should expect after a Lumber puncher is very bad headaches for a few days until your body has replaced the small amount of fluid that they removed.

At the end of these tests the good news was they could find nothing wrong; all the tests had been okay.

The only thing suggested by the Neurologist, and this might have been also as a result of one of my questions, was the possibility of trying a drug called Modafinil which enhances wakefulness, but the Neurologist felt that I should see a Psychiatrist consultant that he thought would know more about this drug.

Go to Part10. See how time just slips by!

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?

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?