For many women with autoimmune conditions, symptom flare-ups are a common monthly pattern.
Joint pain, fatigue, skin changes and a general feeling of unwellness can peak on the day before menstruation and then ebb off again after a new cycle starts.
And for someone like me who has been living with autoimmune polymyositis – where the immune system attacks skeletal muscles, causing inflammation and progressive muscle weakness – for almost 30 years has taught me that this is a very important connection.
What’s the main reason why this happens?
How do you get over it and act better?
Understanding hormones and autoimmunity
Hormones are chemical messengers that affect metabolism, growth, development and immune regulation.
Estrogen and progesterone can play a large role in both stimulating or calming immune activity.
This matters in autoimmune disease when the immune system mistakenly assaults the body’s own tissues and leads to chronic symptoms.
Estrogen can strengthen immune activity, which may worsen autoimmune symptoms in some people.
Progesterone, in contrast, often has a calming effect on inflammation and may bring temporary relief during certain stages of the menstrual cycle.
Many women like me have symptom improvement when progesterone levels are higher, illustrating the extent to which most of the symptoms can be determined by hormonal changes.
Hormonal changes can also influence inflammation through cytokines, the proteins that orchestrate immune responses.
Because estrogen and progesterone rise and fall during a woman’s menstrual cycle, they can affect symptoms in lupus, rheumatoid arthritis, multiple sclerosis and seronegative autoimmune disease.
Knowledge of this relationship can help people make better decisions about symptom management and overall health.
The menstrual cycle
Many women suffering from autoimmune disorders often experience a deterioration of symptoms in the days leading up to their menstrual cycle.
For some, this premenstrual phase is marked by heightened feelings of feverishness, intensified joint and muscle discomfort, severe fatigue and various skin issues.
If this pattern sounds familiar you may wonder what causes it.
In the luteal phase of the menstrual cycle hormone levels change dramatically.
As menstrual periods approach and progesterone levels fall, immune activity may again increase and cause flare-ups of symptoms.
As a result, many people find that their symptoms worsen right before their period and ease after the new cycle begins.
Why these changes happen
It could be due to:
> Hormonal withdrawal:
Some are more physically vulnerable in their menstrual cycle when hormonal fluctuations get more difficult to manage.
This is because estrogen and progesterone levels drop very fast, and inflammation, pain sensitivity and stress reactions are altered.
The fluctuations are often different in people and symptoms may include cramps, bloating, fatigue and sometimes an exacerbation of existing conditions.
> Stress response:
All the physiological and psychological stress of menstruation (e.g., pain, fatigue and mood changes) elevates cortisol levels, which are known to weaken overall immune function.
> Inflammatory activity:
Menstruation involves local inflammatory processes as the body sheds the uterine lining.
For chronic inflammatory or autoimmune diseases, this can only add to existing symptoms.
For many people, identifying this pattern is no easier to see.
It can be difficult to recognise this pattern over time, and it can be hard to see it until months or years of observation.
Early conversations with healthcare providers do not always address the possibility that hormonal shifts are connected with autoimmune symptoms.
Hearing similar experiences from others can be validating and can reduce the confusion or isolation.
It also highlights the need for greater awareness of menstrual-related flare patterns so that patients feel better informed and better supported.
Tracking symptoms
If you were to keep a journal or an app, you would be able to see the patterns and get an awareness of your health system.
It can help to keep track of the following:
> Menstrual cycle:
Record at the beginning and end of each cycle, if you have any early period or ovulation and any premenstrual changes you notice.
> Symptoms:
The physical and emotional symptoms, their intensity and duration are noted daily. > Lifestyle factors:
Tracking stress, sleep, diet, activity levels and any environmental changes that may affect how you feel.
At different stages of your cycle, these notes may crystallise over time.
Just track your own symptoms, stress and diet to know what could trigger the symptoms and then prepare for more difficult days.
When you begin to notice the patterns, you are going to need a few suggestions.
Try the following tips to manage symptoms:
> Prioritise rest and plan ahead:
Don’t rush and wait till you’re in a bad position to rest and keep cortisol levels in check.
If it’s worse in the weeks before your period, you will not be able to be on the go.
During this time you will be able to schedule less demanding and difficult things and will be able to cope better.
Cognitive and emotional support are crucial to reducing symptoms.
> Support your body with gentle daily habits:
Disease relief may come from anti-inflammatory foods, hydration and gentle movement (e.g. restorative yoga).
Meditation and deep breathing are both important for well-being.
> Manage stress:
Stress and hormonal shifts can make autoimmune symptoms more difficult to control.
Meditation or gentle exercise with meditation and creative activities can relieve stress and support relaxation.
Art and music therapy and healthy boundaries in relationships can be good for mental health and good for general health as well.
> Engage with healthcare professionals:
Many healthcare professionals are beginning to recognise that hormonal changes are associated with autoimmune disease so they can now tell you about the link.
Communicating with healthcare professionals, for example, who are specialists in functional medicine and who have expertise in specific areas, may enable you to seek targeted supplements, tailored and/or personalised treatment.
This may help you to hold hormonal fluctuations to a minimum and experience less severe symptoms.
Self-advocacy and good advice will change things.
Putting the science into everyday life
The connection between hormonal changes and autoimmune disease can seem daunting at first, but observation, patience and a proactive approach can make it less overwhelming.
Tracking your cycle, symptoms and daily habits will allow you to better understand your own patterns and make decisions that are beneficial to your health.
You’re not alone in this experience.
Many women notice similar symptom patterns, and greater awareness of these hormonal connections can lead to better self-advocacy, stronger support and more informed care.
By identifying these patterns and sharing them with trusted healthcare providers, it becomes easier to build a practical, personalised approach to managing autoimmune symptoms throughout the menstrual cycle.
Datuk Dr Nor Ashikin Mokhtar is a consultant obstetrician and gynaecologist, and a functional medicine practitioner. For further information, email starhealth@thestar.com.my. The information provided is for educational and communication purposes only, and it should not be construed as personal medical advice. Information published in this article is not intended to replace, supplant or augment a consultation with a health professional regarding the reader’s own medical care. The Star does not give any warranty on accuracy, completeness, functionality, usefulness or other assurances as to the content appearing in this column. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.
