Linda 2015 1

Why did you set up the clinic?

I had been unable to work for 20 years because of pain and severe fatigue,
I thought I'd never be a therapist again!
I was lucky enough to get the chance to be one of the first in this country to try the Alpha-Stim.
I have suffered from fibromyalgia (FMS) since 1989, and pain in my knees since a teenager.
Electric wheelchair

This was the electric wheelchair I was on the point of buying in 2004 when I saw an article by a physiotherapist and nutritional adviser who has FMS and had gone from a similar level of disability to working again full time.

She gave me hope, as before this I had never seen anyone improve their FMS symptoms. I then decided to attend the local pain management programme. It had been suggested a couple of year earlier by members of my support group, but I could not face being treated by fellow OTs when I was just coming to terms with the thought I would never work again. However I found the course very helpful. It improved my relaxation techniques; I started to do two 20-minute relaxation sessions a day, plus five mini sessions. The goal setting was helpful and a few months afterwards I achieved my goal of a painting week in the South of France.

Learning how to manage my activities better, relaxation and diet improved my symptoms by 40 per cent, although I was still too ill to work and spending at least two hours doing this daily regime and another one to two hours sleeping in the afternoon. However hard I tried I could not seem to be able to improve any further. By chance I was given the opportunity to try out a small microcurrent device, which had been in use in the US for three decades but has only recently been introduced to the UK. Cranial electrotherapy stimulation (CES) and microcurrent electrical therapy (MET) are US Food and Drug Administration cleared for insomnia, anxiety and depression and used in pain management. It has a much lower current than transcutaneous electrical nerve stimulation (TENS) devices, which I was unable to tolerate. When I saw the results of the randomised trials and survey I thought the results looked too good to be true; but I gave the device a three-week trial. By the end of the second week I knew my symptoms were improving.

I then bought my own device and my improvement continued for the next nine months. I am now 80 per cent improved to how I was when road testing the electric wheelchair. I still use the device to maintain the reduction in my pain, though my fatigue and brain fog have gone. I am calmer, I no longer have to do the daily relaxation sessions or have afternoon rests. I sleep better and rarely feel stiff in the morning.

After the results of an informal three-week trial with 18 members of the Chiltern Fibromyalgia & Chronic Fatigue support group, where 15 people found it also helped them, I decided to become registered again and to set up a clinic to help others get the best from the devices. My aim is to get the device used in the NHS but until the National Institute for Health and Clinical Excellence has cleared the devices the only way I can help others is via my clinic. I have now been using the device for nine years and have maintained the improvement. In September 2011, after 20 years of asking me to visit, I went to stay with my friend in San Francesco. I had been unable to cope with the 10-hour flight before, because of my back pain, but I even managed to cycle 11 miles over the Golden Gate Bridge.

2018 Update: I managed to maintain 80% improvement for many years. In the last 6 years I've have had 3 surgical procedures and severe menopause. I'm pleased to say even with these set backs I've maintained 70% improvement of my FMS symptoms by continuing to use my Alpha-Stim device. I'm still running my clinic and have just had my first Open Studios exhibition of my art work. I'm also very excited that I now have a far better understanding of 'Central Sensitisation'. This can happen in anyone who has had pain for more than 3 months and is caused by a dysfunction of the pain processing system. I have learnt how this amplification of nerve pathways can be reduced which will reduce the symptoms of pain and some of the more unusual symptoms those of us with FMS can experience. I'm keen to pass on this knowledge on to others to help them find their unique pathway to reducing their symptoms.

A further update 2020: I have dreamed of visiting New Zealand for 40 years to visit another school friend. I've just spent a month visiting and had a wonderful time.

Linda Horncastle is an HCPC registered Occupational Therapist and Member of the Medical Advisory Board for FMA UK