Living with Lupus

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Lupus is a chronic disease with symptoms that can range from mild to life-threatening, Aleney de Winter talks to Toni Briggs Brown about living with Lupus.

So, what is Lupus?

Hard to diagnose as no two cases are alike, Lupus is a chronic condition in which the body’s immune system mistakenly attacks healthy tissues and organs. Symptoms can be vague but are characterised by flare-ups and remissions, the autoimmune disease can affect many parts of the body including your joints, skin, kidneys, blood cells, brain, heart and lungs, with symptoms that can range from mild to life-threatening.

Common symptoms include pain, stiffness or swelling in joints, skin rashes including a ‘butterfly rash’ on the cheeks and nose, fever, fatigue and weakness, loss of appetite and weight, hair loss, ulcers in the mouth and depression. Less common symptoms are inflammation of the lining of the sac around the heart which lead to shortness of breath and chest pain, kidney problems, impaired sight, tendon issues and anaemia.

Living with lupus

Company director and business consultant, Toni Briggs Brown was officially diagnosed with lupus 15 years ago, when she was trying to fall pregnant. At the time, Toni was suffering from blisters on her head and sore joints, but her preoccupation was with conceiving, so wasn’t searching for a diagnosis.  However, her gynaecologist was concerned something was going on in her immune system referred her to leading specialist who did a couple of tests and diagnosed lupus and lymphedema, which can be a sign of active disease.

While Toni believes she was lucky to get such an easy diagnosis, living with lupus has been a difficulty journey, mostly due to the invisibility and misconceptions of her illness.

“I think that’s the hardest thing, No one can see it and people forget. But I suffer from significant joint pain in my hands, feet, and knees. The other thing is exhaustion, which can be further exacerbated by insomnia, another symptom of lupus”.

You know, one minute I’m fine and then I just need to sleep for a whole weekend. And I think that can be really frustrating to my family. It’s easy for them to just think I’m being lazy because the symptoms can come on so suddenly,” she says.

Toni compares the way her lupus diagnosis is treated to losing her hearing a couple of years ago in my right ear. “I get more attention and consideration about my hearing than I do with my lupus. Because to people deafness is real and tangible. It wasn’t until that happened that I realised how intangible lupus was, because people don’t know what they don’t know.”

Managing the disease hasn’t proved easy for Toni. “As a female, I put everyone else first. So, I went through stages where I was managing it really well. And when I managed it well, I was at my healthiest. I cut out a huge amount of carbs out of my diet, I cut a huge amount of sugar out of my diet, I was eating a lot of greens and good protein and I was exercising but then I’d stop looking after myself because I was putting my family and my work first, so the lupus would flair up.

“During a flare up I can’t clench my fist. I get little blisters in my scalp. I have ulcers in my mouth. I get really dry in the eyes. Even the sunlight hurts. And because they put me on steroids, I put on weight. And then I find myself in that never ending cycle of not moving my body and then eating the wrong foods even though I know they’re all the wrong foods. It’s an absolute self-abuse cycle. I’m not looking after myself, because I’m just trying to survive. And I think that is the most frustrating for myself and my family.”

“If this was my husband and his diabetes, I’d be jumping up and down and telling him how dare he’d be that selfish that, but this is what women do. We just put everybody first.”

But Toni believes that the biggest challenge to managing chronic illness is our own mental approach to it all.

“For some people, chronic illness becomes a barrier that stops you from doing things. It’s an excuse. I’m not saying it’s not valid. But for me it has the opposite because I feel like I always have to prove that I can do it and prove everyone wrong. So, I push myself when I probably shouldn’t. I’ve always said no one will define me. But at the same time, chronic illness has so defined me, because I felt like I had to prove myself.”

Toni’s symptoms can be triggered from not prioritising her health and eating the wrong diet, but most often is triggered by stress. “The last few years has been a quite stressful time for me. And I think that constant amplified state has really made it worse”.

Managing lupus

Treatment to make living with lupus more manageable depends on your signs and symptoms. While there’s currently no cure, there are different medications that can help to manage the condition. These include anti-inflammatory drugs that work to reduce tissue inflammation in the short term; antimalarial drugs that can help decrease some symptoms of lupus; corticosteroids that counter the inflammation of lupus; and immunosuppressants that can be used in severe cases to suppress the immune system.

New research released in April 2022, revealed by Scientists at the Centre for Personalised Immunology at the Australian National University (CPI) have discovered a mutation in the TLR7 gene is suspected to be one cause of lupus, which may result in the creation of more effective treatment for some sufferers of the condition.

Toni believes the most important part of managing the condition is to make sure you’re in the right hands. “Get a good GP that you can really have conversations with and finding the right specialist is critical. You need to work with medical professionals who will communicate with you and support your path”.

Toni also advocates looking at your holistic health. Because understanding how different foods affect your body can alleviate and minimise a lot of the struggles that Lupus sufferers are faced with. Complementary treatments including acupuncture, meditation, and biofeedback training can also help relieve pain, stress and inflammation when used alongside traditional medical treatments.

Having the right emotional support is also key says Toni. “Lupus can be an emotional roller coaster, like any chronic disease, and sometimes you just need to pull down the mask and release the emotions because no one can see what you’re going through. It’s exhausting and it amplifies the disease, so having a friend or family member – that one person or something that you can really talk and be your most vulnerable with is important”.

As to why she thinks more women are diagnosed with Lupus than men, Toni says. “We’re amazing. The universe only throws things at us that we can handle, and I don’t think any male really could handle Lupus”.

I think she might be on to something there.

This article provides general information only, and does not constitute health or medical advice. If you have any concerns regarding your health, seek immediate medical attention.

Recently, there has been a burgeoning interest in tracking the physiological changes that occur in the body over the menstrual cycle, and how this impacts the benefits of working out. Yet there are many conflicting results in the field, with nearly half of the current studies we have being of low quality or reduced sample size. Most general studies include predominantly male participants, without accounting for hormone fluctuations in the few females included.

There is also little to no research in the field accounting for hormonal contraception – such as the pill or the intrauterine device. And for those experiencing menopause or post-menopause? While there is evidence for the benefits of exercise in symptom management, the research is not yet clear as to how exercise might be exerting its effects. Still, there are generalities that can help women utilise exercise regimes to work with hormonal fluctuations, rather than against the changing tides.

How do women differ from men during exercise?

Though it may seem an obvious point, there are many ways in which exercise impacts women differently to men that we are only just starting to understand. Women present with less fatigue after exercises employing isometric contractions (such as planks or squats holds), and have to work harder to perform less work due to differences in body mass. The menstrual cycle has an even broader effect on the body’s response to training and in overall performance; yet most studies that do include women have been undertaken during the low hormone phase, when our hormone levels are most similar to mens.

During periods of high female hormones, women can experience higher cardiorespiratory strain as evidenced by increased temperature and heart rate during exercise. Further, some studies have tentatively shown that estrogen has the potential to improve function in our bones and muscles, yet decrease stability of our tendons and ligaments – directly impacting performance and injury rate. Estrogens are also thought to act as antioxidants in our cells, through which they may contribute to increased muscle stability and a reduction in soreness and strain. Indeed, estrogen replacement therapy has been shown to mitigate muscle soreness and inflammation after exercise in post-menopausal women. Yet we still don’t understand how endogenous – naturally present – estrogen is acting during exercise, and whether our bodies are harnessing these potential impacts to full effect.

If one week you’re hitting personal bests and the next you can barely make it through a workout, you may not have regressed in your fitness. Nor does a drop in motivation signal the end of your workout routine; it could all simply be hormonal. When scheduling workouts, it’s important to take into account where you are in your cycle, and to remember key differences that impact outcomes and goals.

Which hormones impact exercise?

The menstrual cycle actually begins in our brains. The hypothalamus – the control centre that maintains homeostasis – secretes gonadotropin-releasing hormone that then travels to the pituitary gland to stimulate the release of luteinising hormone and follicle-stimulating hormone. These two hormones trigger the release of estradiol beta-17 (generally known as estrogen) and progesterone in the ovaries. It’s this hormonal communication between glands that determines the primary stages during the menstrual cycle, cycling over 23-28 days. The follicular phase is day dot: your period. This stage is characterised by the lowest levels of female hormones during the cycle. This stage continues for another 5-6 days past your period, lasting for a total of 12-14 days. After this, estradiol/estrogen begins to rise steadily, which results in the release of the aforementioned luteinising and follicle-stimulating hormones; this culminates in ovulation. Ovulation is when the body releases an egg and is the most fertile stage of a woman’s cycle. Finally, the luteal phase occurs right after ovulation, lasting for the second half of the hormonal parade. The most important change here? Progesterone takes the stage. When the luteal phase is ending, progesterone is at its peak – then, if not pregnant, both estrogen and progesterone suddenly drop to let your brain know that it’s time to begin a whole new cycle.

Exercising during your menstrual cycle

Days 1 -5: menstrual phase  – Here, you are still in your follicular phase and experiencing low progesterone and estrogen. There are over 150 symptoms of periods, and some of these can be debilitating. Combined with the loss of blood, you may be feeling more fatigued than usual. While you may want to reschedule that 10km run, it has also been shown that moderate intensity exercise may actually be beneficial for menstrual symptoms.

Days 6 – 14: follicular phase  – The late stages of the follicular phase are characterised by high estrogen and low progesterone. One of the effects of increased estrogen is the increased ability to build muscle mass. Testosterone also begins to increase coming into ovulation, making this the ideal time to push yourself and utilise increased energy levels. Think high intensity intervals, long runs, powerlifting, strength training and plyometrics – though be aware that you may be more prone to muscle damage during this phase.

Day 14: ovulationWhile there are benefits to exercising leading up to ovulation, it pays to be wary of injury as ovulation hits at day 14. Around this stage, increased estrogen also has the capacity to make tendons and ligaments looser – increasing the risk of injury. On the other hand, estrogen has a positive effect on mood and might actually increase your motivation to train.

Days 15-28: luteal phase – This is where female sex hormones are at their peak. Here, baseline body temperature is increased and the body is more sensitive to exercise in hot or humid environments. The presence of progesterone can also increase your resting heart rate and breathing rate, all interpreted by the body as added strain when exercising and contributing to a perception of working harder. Progesterone is also responsible for drowsiness and a greater difficulty in learning new skills or movements, triggering the all-too-familiar ‘foggy’ feeling experienced by some before menstruation. Towards the end of the luteal phase, it’s time to taper down and focus on restorative exercise like pilates and low intensity training like long walks or bike rides. This is especially important in light of the reduced ability for muscles to heal small tears induced by exercise during the luteal phase.

Keep in mind that everyone’s menstrual cycle differs; no exercise plan will ever suit any one individual. Overall, the best exercise is always what you enjoy and what is right for you. Knowing how your fluctuating hormones may impact your performance is great to have in mind, but this information should not change any routines you are already comfortable with.

Exercising during menopause

The physical changes that come with the withdrawal of female sex hormones can wreak havoc on the body. Altered metabolism and hormone levels during perimenopause and menopause are complex and occur at the same time as an increased risk of developing bone and cardiac issues, and of suffering from metabolic disorders. Additionally, this period of transition results in exhausting physical and mental symptoms that affect daily life; this may leave you with little to no motivation to lace up your runners and work up a sweat. Yet the benefits of exercise during menopause and post-menopause can be life changing, impacting not just your physical health, but your overall quality of life and longevity.

A reduction in muscle mass and weight gain are two frequent symptoms of menopause. The loss of estrogen may leave you more prone to carrying fat at your waist; particularly in the form ‘visceral adipose tissue’, a known risk for cardiovascular disease. The lack of female sex hormones can also alter your perception of satiation and hunger – creating a double-edged sword when it comes to maintaining your health during this difficult transition.

Exercise before and after menopause has a range of benefits in combatting your risk of developing disease and of staying healthy overall. Menopause symptoms have been found to be more frequent amongst less active women, with those undertaking aerobic training for 6 months seeing a decrease in night sweats and mood swings. Similar results have been yielded in post-menopausal women, where those participating in an exercise program for 24 weeks experienced reduced hot flashes and symptoms such as depressive mood and irritability. There are many factors that may be influencing these findings; baseline fitness, life history and comorbidities may play a role in how we interpret the impact of exercise in menopausal and post-menopausal women. Yet regardless of the exact physiological mechanism, it is clear exercise can be a potent balm for physical and emotional symptoms of transition.

How to combat the symptoms of menopause with exercise?

Bone health is an area of concern for women following the cessation of the menstrual cycle. A woman’s bone mass peaks at 30, and after that is followed by gradual loss – a loss that accelerates in the year just before menopause. The majority of cases of osteoporosis in woman occur at post-menopause, with a number of lifestyle factors increasing the associated risk. Muscle mass is also shown to decrease once menopause begins, and estrogen declines. To improve bone health  and muscle mass at this stage, weight bearing and strength exercises are key. Key targets for these exercises are the large muscles of the back; hip flexors and extensors; and the muscles of the thigh, upper arm and forearm, all responsible for supporting those areas of the skeleton most involved in osteoporotic fractures. Targeting these regions is critical for maintained bone health and support for the skeleton as we age.

Menopause also comes with an increased risk of cardiovascular disorders. Exercises targeting the cardiovascular system make you breath faster and get your heart working harder, strengthening the whole network. Though this may be the last thing you want to do when experiencing hot flashes, some research suggests improving cardiorespiratory fitness can actually reduce the sensation. This may be through better regulation of temperature and enhanced functions of blood circulation. To reap the benefits, aim to complete at least 150 minutes a week of moderate activity; things like gardening, walking, cycling or swimming. When doing higher intensity exercise, less time is needed during the week to see the same outcomes – think hill sprints or tennis.

Women may experience a reduction in joint mobility after menopause hits. While this can be a symptom of arthritis – as mentioned above, a common disorder for women at this life stage – it’s also a byproduct of reduced estrogen at our connective tissues and cartilage, where the hormone maintains health and replacement. Practicing yoga or Pilates can have a vast impact on maintaining supple joints, with whole body movement promoting all-over joint health as well as providing a weight-bearing exercise.

The weakening of the pelvic floor with the onset of menopause and reduced progesterone can create bladder and bowel issues, and even impact sexual health. This is a trickier set of muscles to target; if you are experiencing issues with your pelvic floor, it’s best to speak to a physiotherapist who can give an individualised rehabilitation program. If the weakening isn’t too severe, Pilates is again an excellent option for strengthening the pelvic floor and supporting muscles.

Menopause and post-menopause can trigger disruptions to mood and reduce motivation; while exercise can be incredibly beneficial in relieving the state of each, it’s a matter of getting started that can be difficult. It can be intimidating to begin a new exercise regime at any time of life, let alone when you feel your body is somehow out of your control. It’s important to set realistic and achievable goals. In general, you should make sure you’re covering all of your bases by having variety in your exercise plan. Importantly, it should always be enjoyable!

Check with your doctor before beginning any exercise regime, and use exercise not just as a duty to fulfil to combat hormonal swings; but as a way to work with the changes happening in your body for your best quality of life.