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.