How does your husband handle your fibromyalgia?
Is he like a knight in shining armour providing every little thing you need?
Or is he more like a real person?
Kind and understanding some days? Frustrated and impatient other days?
Fibromyalgia takes a toll on even the strongest of relationships.
Living with someone is a challenge at the best of times.
If you add the additional stress of chronic illness things become even harder.
The statistics are sad but not surprising.
Researchers from the University of Michigan found the divorce rate was as high as 75% for couples dealing with a chronic illness.
Men were more likely than women to get sick but…
Divorce was more common when the wife got sick.
This is a cruel double whammy for women. First you get sick – then you get divorced.
As a species we depend on relationships to survive and thrive.
We need to feel a connection and yearn for intimacy (and not just the under the sheets kind of intimacy).
I’m sure you have heard it before, but communication is essential for a happy, healthy relationship.
But for many women there is a painful elephant in the room – fibromyalgia.
It is essential to have a shared understanding of fibromyalgia.
What is fibromyalgia? How does it affect you? What support do you need?
It is also just as important to acknowledge that pain has a two-way effect.
Fibromyalgia affects not just you but also your family too.
Although it sounds a little backward, the first step to explaining your fibromyalgia to your husband is to think about it from his perspective.
A man’s perspective on his wife’s fibromyalgia
A Swedish study examined the husband’s experience of living with a woman with fibromyalgia.
The researchers interviewed five men married to women with fibromyalgia. The interview revealed seven themes:
- increased responsibility and work in the home
- being an advocate for and supporting the wife
- learning to see their wife’s changing needs
- changing relationship between spouses
- changing relationships with friends and relatives
- deepening relationship with children
- and a lack of information and knowledge about fibromyalgia
The study concluded that it was not only the woman that was affected by fibromyalgia. The husband’s role in the family changes with increased workload and responsibility in the home.
The results also highlighted that husband’s felt they lacked knowledge and information about fibromyalgia.
This study (and a bit of common sense) suggest to help your husband to understand fibromyalgia you need to tackle it in three stages.
Stage 1: The Science Part – What is actually going on in your body when you have fibromyalgia?
Stage 2: The Long-Term Outlook Part – How bad does fibromyalgia get? Are there different stages to fibromyalgia? What can you do to reduce the symptoms of fibromyalgia and improve your quality of life?
Stage 3: The Relationship Part – What impact is fibromyalgia having on you as a couple? What impact is fibromyalgia having on your husband? What can you do to reduce the impact of fibromyalgia on your marriage?
So, the first step to answer the question “how to explain fibromyalgia to my husband” should be the science part.
What is fibromyalgia?
Is fibromyalgia real?
Fibromyalgia is a chronic disorder which means sufferers have it for the long haul.
Fibromyalgia causes widespread, areas of pain, tenderness, and general fatigue.
Most of the symptoms of fibromyalgia show no visible signs. This can leave people (including husbands, friends and families) questioning if fibromyalgia is real.
There are no objective tests to measure for fibromyalgia because the symptoms are subjective. The lack of standardized tests means fibromyalgia can be misdiagnosed.
Although fibromyalgia has been recognised as a condition for over 30 years, many sufferers were made to feel it was ‘all in their heads’.
Unfortunately, the lack of standard tests made some doctors question the condition altogether. Many people with fibromyalgia felt victimised by doctors who thought they were seeking pain medication.
The Mayo Clinic reports that this lack of medical support increases your chance of depression. Depression is also caused by struggling with the emotional burden of painful symptoms.
As scientists discover more about fibromyalgia, the stigma surrounding the condition is disappearing. Doctors now recognise that an integrated approach that covers the body, mind and social well-being helps patients. Lifestyle changes may be better than medication in treating and managing this condition.
The more doctors who begin to accept this diagnosis, the more likely the medical community is to find effective ways of treating fibromyalgia.
Latest Science Around Fibromyalgia
Although fibromyalgia is still not fully understood – we do know there are several systems involved.
Central Nervous System and Fibromyalgia
The central nervous system is the part of the nervous system made up of the brain and spinal cord.
It is called the central nervous system because it receives all of the information from the body and co-ordinates how to respond.
This information includes pain and how your body perceives and responds to that pain.
In people with fibromyalgia there are changes in the central nervous system.
Pain signals are sent to the brain by messenger cells called neurons. After a painful experience the neurons become increasingly excited. This causes you to perceive the exact same sensation as stronger or more painful. This occurs normally in everyone but it is excessive for people with fibromyalgia.
Another mechanism within the central nervous system that constrains pain signals is impaired in people with fibromyalgia.
These neuron pathways change due to neuroplasticity.
Neuroplasticity is the ability of the brain to change to suit your body’s needs.
Take driving a car for example, at first it takes a lot of concentration. After driving for a couple of months the actions become automatic.
For people with fibromyalgia the body’s ability to process pain has become automatic.
Your body has developed a pattern of pain.
We can use neuroplasticity to heal – find out more here.
There are also changes in the chemistry the central nervous system of people with fibromyalgia.
Various cells, neurotransmitters or hormones seem to be involved in the overly sensitized nervous system. These include:
These cells play a role in moderating the pain signals in the spinal cord. The glial cells release chemicals that prolong the excitability of the neurons and the duration of the pain signals.
Serotonin is our happy hormone. It is also an incredibly powerful painkiller. Studies have found that serotonin is 60 times more powerful than prescription opioids. Serotonin and tryptophan (needed to make serotonin) have been measured in people with fibromyalgia. Studies have found low levels of serotonin in people with fibromyalgia. Serotonin also plays an important role in regulating mood and sleep. This may help to explain why people with fibromyalgia have sleep problems and fatigue.
Norepinephrine and dopamine
Norepinephrine gets you alert and ready for action. It can also increase restlessness and anxiety. Dopamine is thought of as the chemical responsible for pleasure in the brain. A more accurate description is dopamine influences your motivation and actions. Norepinephrine and dopamine are neurotransmitters that work in your body’s natural opioid system. These and other neurotransmitters seem to be hyperactive in people with fibromyalgia but they are unable to moderate pain signals. This could explain why prescription opioids are less effective for people with fibromyalgia.
The complex role of the brain in fibromyalgia has been supported through several brain imaging studies.
Stress Response and Fibromyalgia
Cortisol is the stress hormone. It prepares you to respond to a threat or danger.
It has a full body effect to get you ready for fight or flight.
Cortisol raises your heart rate, increases the levels of glucose in the blood stream and reduces inflammation.
Cortisol also suppresses non-essential bodily functions. This includes the digestive system, reproductive system and growth processes.
Cortisol can also affect your immune system. More information on your immune system and chronic pain is available here.
Studies have found elevated levels of the stress hormone cortisol in patients with fibromyalgia. The elevated cortisol levels are particularly high in the evening. This may contribute to the sleep disturbances linked to fibromyalgia.
People with fibromyalgia also have high levels of adrenocorticotropic hormone. Adrenocorticotropic hormone triggers the release of more stress hormone cortisol.
The sympathetic nervous system is responsible for your fight or flight response.
Studies have confirmed the sympathetic nervous system is abnormally active in people with fibromyalgia. The hyperactive ‘fight or flight’ response of the sympathetic nervous system leads to an abnormally low sensitivity to stress.
The stress response of people with fibromyalgia could account for a number of the symptoms such as:
- morning stiffness
- sleep disorders
- Raynaud’s like symptoms (reduced blood flow to fingers causing numbness or pain)
- sicca symptoms (irritated and dry eyes, dry mouth, difficulty swallowing)
- irritable bowel
How does fibromyalgia start?
Scientists still don’t know why some people get fibromyalgia.
A number of things can cause the body to go awry. Many people report different things that seemed to trigger their fibromyalgia. Commonly reported triggers include:
- Genes – there is a genetic predisposition to fibromyalgia
- Sleep disorders – there is a link between sleep disturbances and fibromyalgia.
- Other auto-immune conditions – such as rheumatoid arthritis, Lupus and inflammatory bowel disease (IBD)
- Viruses – including hepatitis C, HIV, Coxsackie B, and Parvovirus
- Bacterial infection – including Lyme disease
- Environmental chemicals – including pesticides
- Food additives – including the artificial sweetener aspartame
- Physical Injury – onset has occurred after work-injury, surgery or sports injury. Famously Morgan Freeman developed fibromyalgia after a car crash.
- Trauma – such as abuse, neglect and sexual assault
- Psychiatric conditions – including anxiety and depression
- Small intestinal bacterial overgrowth (SIBO)
- Leaky gut – also known as intestinal permeability. For more read here.
Others can’t point to anything specific. One study of 127 fibromyalgia patients found in 72% there was no preceding trigger to the onset of fibromyalgia.
Fibromyalgia is a debilitating chronic condition that causes pain and fatigue.
Many women feel like fibromyalgia is damaging their relationships as well as their health.
A Swedish study found that many husbands felt they lacked knowledge and understanding of their wive’s condition, fibromyalgia.
If you struggle with ‘how to explain fibromyalgia to my husband?’ – you might find a 3 part strategy helpful.
Stage 1: The Science – What is actually going on in your body when you have fibromyalgia?
Stage 2: Types of Fibromyalgia Pain – How bad does fibromyalgia pain get? What are the different types of fibromyalgia pain? What can you do to reduce the symptoms of fibromyalgia and improve your quality of life?
Stage 3: The Relationship – What impact is fibromyalgia having on you as a couple? What impact is fibromyalgia having on your husband? What can you do to reduce the impact of fibromyalgia on your marriage?
Next week we will publish ‘Stage 2: How to explain fibromyalgia – The long-term-outlook for people with fibromyalgia’