Taking control of Fibromyalgia
Caroline Williams
In an interview in 2018, Dr. Eric L. Matteson, a professor of medicine at Mayo Clinic College of Medicine and Science in Rochester, Minnesota said “I think most physicians are aware of fibromyalgia, although many still don’t believe in it. Even among physicians who accept the science and existence of fibromyalgia, there is lack of understanding of it, which hampers their ability to effectively communicate about it with their patients.”
His comment highlights a central problem for fibromyalgia sufferers and the people treating them. We lack good clear information about the condition. What we need is information that is easy to understand, and communicate, and information that can be useful for the people with the condition, so they can help themselves.
A lack of essential biological understanding about the condition is responsible for a yawning gap, between the experience of having fibromyalgia, and other people’s inability to comprehend it from the outside. This lack of understanding can create a dismissive attitude towards anyone with fibromyalgia.
Often the first thing a new client will say to me, whether they have a diagnosis or not, is that no-one believes them, or understands how ill and unwell they feel. This is especially distressing as we know that being misunderstood, or disbelieved, is the first step to undermine someone’s mental health, and conversely there is immense relief in being properly heard and having our own personal experience validated.
When your symptoms are not caused by fibromyalgia
The lack of understanding is also causing people with other illnesses or symptoms to be told they are ‘just fibromyalgia’, when the symptoms do not fit into a fibromyalgia pattern.
For instance, we know that fibromyalgia causes nerve pains and random moving pains, sometimes creating stabbing, pins and needles or sharp feelings. However leg numbness and weakness in the legs is a clear symptom of pressure on nerves from a structural cause, often in the lower back at the lower lumbar area where the nerves for the legs leave the spinal cord. Worryingly, I see people not treated, scanned or examined for some injuries, as it is assumed that everything they feel is now all just fibromyalgia.
What we need is for the medical profession as a whole to have a better understanding about fibromyalgia, otherwise fibromyalgia is just a tag to add to any symptom that a medic doesn’t understand. So what is our next step to help this to happen?
The informed fibro patient
Most people I have met who have had fibromyalgia for any time are very well informed. They have found out as much as they can, and they have usually tried to make some lifestyle changes. Magazines like this one gather useful advice specifically for fibromyalgia sufferers, and some health websites are helpful. It is very likely that you know more than your doctor does about the condition and I would bet that you know more about how the condition feels, and common symptoms of fibromyalgia than the majority of doctors.
For many diseases getting a medical diagnosis allows access to useful information or treatments, but receiving a diagnosis of fibromyalgia can feel more like being given a label that just says ‘we give up’ or that you are ‘incurable’. It’s no wonder that so many patients feel frustrated.
What kind of information do we want?
Not all information is useful. A dismissive attitude to fibromyalgia can be expressed in sound-bite comments, such as ‘its just because you are too stressed’ or ‘you just need to rest more’. This is not information. Those one-liners are only personal opinions. They perpetuate simplistic beliefs about fibromyalgia, instead of exploring the biology of it further. But worse is that they seem to place blame or responsibility on the person with the condition.
No one blames someone with Hay fever for having it, even though the causes of hay fever are just as invisible as the causes of fibromyalgia!
New research is coming
Fortunately our scientific communities are working to find solutions for chronic pain and conditions like fibromyalgia, and have discovered a lot of information. There is new knowledge and some useful ideas, but for patients this is not readily available yet.
It takes time to change medical thinking and at present this new knowledge is often ignored, in favour of hanging on to an outdated view of the body. If some doctors do have a good understanding about the new pain sciences they are still hampered by having too little time to communicate it to their patients.
Part of this new research is new information about brain chemistry. We have plenty of evidence that brain chemistry is disrupted in fibromyalgia, but little advice from our medical profession about what we could do ourselves to improve it. So we have a gap between scientific research, and a general knowledge about fibromyalgia, for both doctors and their patients.
Fibromyalgia is complex and I believe the answer to fibromyalgia is to look at the condition from several perspectives. In the future I envision a system for supporting people with fibromyalgia, in the same way that conditions like diabetes currently have specialist nurses, advice, information and dedicated research.
Below is an a short excerpt from my new book about fibromyalgia, and I am aware that on its own it will not illuminate the whole fibromyalgia condition. However I hope it will demonstrate that science does have plenty of research to explain many experiences that happen to us. (It might be helpful to know that glutamate is a natural chemical that becomes elevated in the brain during fibromyalgia).
. . . . .
A strange sting in the tail
I want to share with you a brief story about pain research to illustrate a common connection between painful events, chronic pain, and glutamate.
To research how pain can occur in the body, and to find pain relieving
medications to get rid of it, isn’t very easy. Scientists generally have to start by creating some pain in a research animal, usually a rat. It is an unfortunate problem that animals are mainly used to research pain.
One way to induce a temporary pain is to inject a 1% acidic saline into a leg muscle. This is mildly painful but does not cause any actual damage to the muscle tissues themselves. The pain then wears off as the saline is absorbed naturally by the body.
I am telling you this because an unusual biological mechanism is triggered if the rat is given two injections in the same muscle, a few days apart. This shouldn’t cause anything out of the ordinary to happen, as the rat is always well acclimatised to the procedures and
lightly anaesthetised, so he should not be anticipating anything or be fearful. When the first injection is given, nothing ‘unusual’ happens in the rat, he just feels discomfort in that muscle.
However, when the animal is given a second injection, the researchers see that there is a release of glutamate both in the spinal cord and in the brain. The rat then develops a heightened and long-lasting sensitivity to pain in other parts of his body. This is called muscle-induced hyperalgesia.
This effect can also be produced in humans by injecting extracts of chilli under the skin, or by stimulating the skin with electrical impulses so it becomes sore and sensitive. Muscle-induced hyperalgesia is a standard method used in laboratories to test pain medications and explore pain transmission pathways.
What is hyperalgesia?
Hyperalgesia means the body becomes more sensitive to pain.
Hyperalgesia is a kind of neuropathic pain, which means it is caused by changes to the nervous system itself rather than being caused by damage to the body, (like in an injury to a muscle or a bone).
Chemicals in the body can create hyperalgesia, but it can happen when there is no obvious physical cause.
Why would the rat’s body respond this way? It doesn’t seem logical to create a long lasting hypersensitivity to pain in response to a non-damaging injection. However, the central nervous system appears to learn something from the first injection and when the second injection is administered the body responds in a more strongly and maladaptive way.
Just like the immune system, the nervous system can ‘learn' from previous events. We used to think that the nervous system and the immune system were quite separate, but they are now known to be working very closely together. The nervous system reacts differently to a second exposure of pain.
So, in the case of the rat who is being given a second injection, its nervous system is creating symptoms to get the body to move away from something that is perceived as dangerous.
. . . . .
From this small example you can already see that our experience of pain is not simple, and neither is it ‘all in the mind’!
My book aims to offer explanations, reassurance (that you are definitely not imagining anything), and natural tools that I use in my own clinic to help reverse the fibromyalgia condition.
Taking Control of Fibromyalgia: following science on a natural path to health, by Caroline Williams, is available on Amazon from the 15th of August. Caroline has been an acupuncturist for twenty years and runs a health practice in Suffolk, UK.
[The book contains over 150 references to medical papers, but to save space they have been omitted here.]