This article is written by Lesley Postle, who first met Sarah Key for a back problem in 2006 and has latterly been her website builder. Recently Lesley was diagnosed with fibromyalgia
When two ladies in the Southern Highlands of New South Wales decided to start a support group for fibromyalgia, having been recently diagnosed themselves, they expected it would be 3 or 4 people in their front room. At the first meeting 19 people turned up and now there are more than 30 members including myself. (For my story, see below).
This small example from an Australian country town demonstrates that fibromyalgia syndrome (FMS) is much more common in the population than most people, including doctors realise.
A recent Mayo Clinic study estimates that 6.4% of the general population in the USA have FMS, with about 85% of them women. In Canada ‘a prevalence study of randomly selected school age children suggests that 6.2% meet the criteria for FMS’ *
At it’s worst, the condition can be completely disabling, with many patients bedridden and in unrelenting pain.
The condition usually goes undiagnosed for years, with most patients waiting at least 5 years before finding the cause of their symptoms. The reason for this is the wide variety of symptoms with varying severity, which develop slowly over many years. Most patients have visited many different specialists without finding a cause before they stumble upon fibromyalgia. Symptoms tend to come and go, and so patients look for an answer to one condition at a time.
If we did mention everything that was wrong with us all at once, the reaction of most practitioners sadly seems to be that we are hypochondriacs or malingers. I was told by two different urologists that my bladder symptoms were psychological!
The term means pain in muscle tissue, but the syndrome, which is now known to be genetic is much more than that. FMS is an ‘inherited immune system dysregulation disease’, which can cause symptoms in all the systems of the body. The most well known of these is muscular pain. What is actually happening is that muscles become chronically stiff and contracted and are unable to relax. Knots form in the muscles, known as “myofascial trigger points” which can cause pain.
Dr St Amand believes patients are unable to remove a specific biochemical substance efficiently through the kidneys, which causes a build up in the cells of the body. (He thinks that the substance is most likely to be phosphate). The excess chemical causes cells to swell creating the lumpy muscles associated with the condition. It also interferes with the energy producing mechanism within cells which means that muscles are unable to produce energy and cannot contract and relax properly. Once the body is unable to store any more in the muscles, the excess chemical builds up in other tissues of the body, which is why the syndrome can cause symptoms in any system of the body as well as severe fatigue. It is now thought that chronic fatigue syndrome is the same as FMS.
Patients with FMS can present with any combination of the following symptoms, which explains why it is so difficult to diagnose. Many symptoms occur in other conditions, and so it is important to make sure that a doctor rules out any other causes.
Since this is a website about back pain, I have described below how fibromyalgia is also a cause of back pain.
Not surprisingly depression is also common among fibromyalgia sufferers, although those at the support group I attend are an incredibly positive and resiliant bunch of people. I think you have to be to cope with this syndrome!
As Sarah Key describes in her article ‘physiotherapy for muscular rigidity’ stiff muscles can have a profound affect on the spine. The constant tug of tight muscles which cannot let go can not only compress the spine, but also pull the spine to one side or the other, causing short leg and/or scoliosis. Musculoskeletal changes can take place in any part of the spine, causing associated pain in the neck, sciatica or lower back pain, and discomfort in the ribs or sternum (which may create breathlessness). When the spine is compressed, there may be interference with the nerves at that level, which can cause related symptoms. I know from personal experience that if my neck is stiff, I often suffer from nausea, and that when my lower back is stiff my bladder irritation symptoms are worse.
Looking after your spine using Sarah Key’s BackBlock can help to reduce symptoms caused by spinal decompression.
lying on the BackBlock
FMS was only recognised as a syndrome in 1993, and as such, a list of diagnostic features were developed. The main feature being that 11 out of a possible 18 myofascial trigger points needed to be present. Most doctors now believe that to be too simplistic, and a more flexible diagnosis based on mapping of trigger points, related symptoms and exclusion of other conditions is mostly used now. Once the new blood test is available in every country, diagnosis will be much easier.
As recently as April 2013, scientists in the USA have released a blood test for fibromyalgia which will transform diagnosis and treatment of the disease. It will also make life much easier for millions of sufferers who have been unable to get disability allowances because there was no definitive proof of the condition. For the moment it is only available in the USA. You can read about it here.
Medication for Fibromyalgia
The standard treatments have included analgesics, antidepressants, sedatives, anti-spasmodics and narcotics which are described on this website. However, they do not work for everyone and most have quite severe side effects.
Reversing Fibromyalgia with Guaifenesin
The Guaifenesin Protocol developed by Dr St Amand is not a cure, but the drug used helps the kidney’s to get rid of the excess phosphates in the body, which reverses the symptoms of the disease over time. The drug is a relatively cheap, over the counter medicine, which has no side effects. It takes time to reverse the symptoms of FMS, and unfortunately, the process of removing the biochemical build up from the cells can be painful. Most people don’t suffer more pain than they have experienced in the past, but it can be unpleasant. However, as time goes on, good days start to become more frequent and the pain less severe. How long it takes an individual to recover depends on how long they have had the disease.
Instructions for following the protocol are on the website and in Dr St Amand’s book: What your Doctor May Not Tell You About Fibromyalgia. R. Paul St. Amand MD and Claudia Marek.
Swimming is an excellent exercise for FMS
Since belonging to the Southern Highlands support group and one or two online support groups (see below for details), I have come to realise that I am one of the lucky ones. My symptoms are less severe than many, and I have been able to continue working (albeit part-time) for the last ten years.
I think part of the reason for this, is that somehow, instinctively, I was doing a lot of the right things to alleviate my symptoms. The advice given to patients to help symptoms include the following:
Exercise (this helps to increase the number of mitochondria in your cells which produce energy and also minimises muscle stiffness). The best exercises for fibromyalgia are walking, yoga and swimming (especially in warm water pools or spas). I go to yoga twice a week and it helps enormously.
Physiotherapy - keeping the spine supple and decompressed using Sarah Key’s BackBlock has been absolutely invaluable for me and has improved my quality of life dramatically. I use it every day.
Moist heat - hot showers and baths, heat packs and spas are well known pain relievers in FMS. It is thought that the heat reduces the number of pain receptors in the muscles (which are elevated in FMS sufferers).
Acupuncture - this has been demonstrated to reduce pain levels, reduce sweating, and help with sleep. I have certainly experienced this.
Gentle yoga is good for the muscles and posture
Looking back to my childhood I can now see that my symptoms started young. I had bladder irritation as far back as I can remember, and I put the painful knots in my shoulders down to hours of piano and flute practice. I have had chronic constipation too all my life. I also have hypoglycaemia which came to a head with some frightening fainting and heart pounding attacks before I worked out what it was. And that goes back to childhood too. I remember feeling so weak and wobbly after school that I would eat a whole packet of chocolate biscuits on the way home.
Most of my symptoms seem to have started after I emigrated to Australia in 2003. I began to have lower back pain, pain in my thorax and pain in my neck. None of the many osteopaths or chiropractors I visited could explain why. By the time I met Sarah Key in 2006, I could hardly walk for the pain in my feet. Treatment from Sarah alleviated the foot and back pain dramatically and she diagnosed a scoliosis and a short leg.
Having no idea I had fibromyalgia, I assumed I’d had the scoliosis since childhood, but reading the Canadian study*, it seems that musculoskeletal changes and patterns of imbalance develop over months or years in FMS and that they can cause postural problems such as shoulder elevation and the slumped forward posture, lumbar lordosis, one shoulder higher than the other, taut pectoral muscles causing tightness in the chest, tight hip flexors and ‘forward pelvic tilt causing stress to the lumbar spine (particularly at L5/S1)’ a functional short leg and scoliosis.
It was Sarah’s article on muscular rigidity that set me on the search for information about fibromyalgia, and I was lucky enough to find the support group who put me onto a knowledgeable doctor and Dr St. Amand’s book, which was a revelation. It was like reading my life story. My previous GP, when faced with my list of symptoms had said “Well, there’s nothing I can do about any of that!”.
At the time of writing I have been on Dr St Amand’s hypoglycaemia diet and the Guaifenesin protocol for 3 months. My heart palpitations have stopped. I no longer have faint spells and weakness. I am no longer breathless. My hot flushes are less severe. I am sleeping better and some of my painful muscles have started to clear, especially in my jaw. I have good days and bad days, but the Guaifenesin protocol has given me enormous hope that I am going to get better.
UPDATE: I've now been on the protocol for 2 years. I rarely have any pain and my energy levels have increased dramatically. I sleep well and my extreme fatigue is a thing of the past. I do up to four stenuous yoga classes a week. I will always stay on Guaifenesin. It is the best thing I ever did for my health.
I am quite convinced that if I hadn’t found Sarah Key when I did, I wouldn’t have been able to continue with my field work job until 2012, and my symptoms would have been far worse. The treatments I received from Sarah and her trained physiotherapists at the Sarah Key Physiotherapy Centre in Sydney, and at the Back-in-a-Week intensive spinal therapy retreat, reduced my pain dramatically and increased my flexibility so that I was able to function.
When I stopped using the BackBlock for a while a couple of years ago during a stressful period when my father died and I was moving house, I ended up at the point where I was in constant pain, I couldn’t bend, I couldn’t put my socks on, I could hardly walk to the end of the driveway. A couple of treatments from Sarah, and a week or two on my BackBlock and I was a different person again.
*Carruthers & Van de Sande: Fibromyalgia Syndrome, A Clinical Case Definition and Clinical Guidelines for Medical Practitioners. http://sacfs.asn.au/download/consensus_overview_fms.pdf
Losing your health can bring on many of the emotions of grief. The author of this article, Lesley and her mother have created a website helping people cope with grief and loss. This includes sections on coping with chronic illnesses and loss of job due to disability.
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