I am an expert in lupus, a five-star-rated Amazon author on this subject and a psychotherapist and I treat and coach people with lupus based on personal experience, which my clients particularly appreciate, and offer over 10 years research in the field.
Some 95% of people with lupus experience chronic pain, and this article examines what constitutes chronic pain and how the latest developments in brain research have shown dramatically how pain, in particular sustained, long term pain, negatively interferes with the proper functioning of the brain.
Acute pain is defined as essentially temporary such as when you receive an injury to a part of your body, as with severe bruising, pulling muscles, straining tendons or breaking bones or cutting or burning the skin. Chronic pain is different because it stays and is defined as constant or recurrent pain which lasts longer than 12 weeks. According to one of the latest surveys in September 2018, 20.4% of US adults have experienced chronic pain with 8% suffering high impact chronic pain.
Led by advances in functional magnetic resonance imaging (fMRI) since the early 1990s built on the existing MRI technology and new discoveries into the properties of oxygen-rich blood, scientists have been able to examine the brain without sedation, injection of highlighting fluids or radiation. It has been found that deoxygenated blood is more magnetic than oxygenated blood and the difference in the signals as the blood moves into different parts of the brain can therefore be measured.
Huge strides in this research have continued over the last 20 years: In 2008, Dante Chialvo, associate research professor of physiology at the Feinburg School at Northwestern University in the US found that in healthy people the key areas of the brain all work together in harmony. When one region is active the other regions quieten down. However, he discovered that in chronic pain patients, the frontal lobe, the area most involved in emotion, never goes quiet. As Chialvo noted “If you are a chronic pain patient you have pain twenty-four hours a day, seven days a week, every minute of your life”.
Furthermore, Chialvo went on to identify that this continuous processing actually damages the neurons in the frontal lobe; wearing them out, and that furthermore, it disrupts the harmonious functioning of the brain as a whole (Chialvo 2008). He went on to propose that this disruption can lead to problems such as depression, anxiety and insomnia in patients suffering from chronic pain.
Support for Chialvo’s conclusions came from a 2012 study on mice which showed that pain damaged the hippocampus, the region of the brain responsible for learning, memory and processing emotions, markedly disrupting the brain’s ability to produce new neurons. These findings were reinforced in 2017, when the New Scientist reported on a new study, again on mice and using the latest neuroimaging techniques, which showed that chronic pain induced changes in key regions of their brains and the poor mice “developed anxiety and depression-like behaviours” (Ananthaswamy 2017).
Having lived with the reality of severe 24/7 pain stemming from my massive lupus flare in 2012, I can corroborate reports from people with chronic pain who describe their disordered thinking, poorer concentration and memory loss. I called it my “scrambled egg brain” which was completely at odds with the reliable machine that had previously organised my very busy, highly productive life prior to 2012 and had passed my most recent academic qualifications with distinction. People with lupus have become familiar with these symptoms which are collectively referred to with the term “lupus fog”.
Describing these scientific findings is, I find, often a huge relief for chronic pain and lupus patients. That there is a concrete explanation for their experiences goes a long way to reducing their feelings of stupidity. Being able to rationalise what is happening significantly reduces corrosive feelings of helplessness. Toxic feelings of guilt are ameliorated. They are, for the first time, given the insight that: “It is not me but the pain”. The importance impact that this has on self-esteem cannot be underestimated as patients appreciate that “The real me is still in there just battered by awful symptoms”. Furthermore, it gives them hope that a reduction in the pain will allow them to regain their brain power and emotional equilibrium.
I am a great believer that recurrent and severe pain, and which with lupus can escalate despite everyone’s best efforts, should first and foremost be understood with the greatest compassion, and be given the maximum support. I can provide a safe, secure and totally non-judgemental environment for you to reveal the real extent of your pain and how it makes you feel.
Secondly, it should not be tolerated. Stoicism is of limited value. Pain is unacceptable in my book. Avoidance and lack of management can merely escalate pain. Pain is detrimental to your whole well-being and must be tackled head on and conquered with every method possible.
Through extensive research and trial and error, I have found what methods can be employed to help here. They include advice on the medications that are available – working alongside doctors and consultants. I can advise when you are in my opinion receiving inadequate pain relief from the medical profession. I can advise on what therapies do and don’t work with lupus pain and which are likely to just make things worse and I can also advise on the alternative treatments that are available, including the latest sources and developments.
There is also a great deal that you can learn to enable you to feel totally differently about your pain, to get out in front of it, to feel more in control of it and not to feel despair but to feel empowered. These include tried and tested breathing techniques, positive reframing, mindfulness and specific cognitive behavioural methods. This can improve how you feel about yourself, your relationships and your whole way of life.
Now you may be able to read up across numerous sources and find these out for yourself but it took me many years dealing with my chronic pain and that of others to find out what actually worked, as opposed to what is supposed to work, and I now teach these methods step by step to my clients.
If you would like to schedule a free 20 minute conversation on how I can help you lose all the negatives associated with your chronic pain and take control once again, click on the contact page.
