Training with Chronic Pain and Systemic Lupus

I grew up in high impact team sports and strength training regimens.

I loved basketball and volleyball.

I had been known to try my hand at soccer, la cross, and field hockey too. 

At the time, I was about 165 pounds and 5’6” — strong, confident, and muscular.

I was always put in a defensive position on the team, and I wasn’t remotely scared to charge at girls taller, larger, or stronger than me. 

Basketball was the sport where I shone and In high school and college, I played competitively.

That was my life — competitive athlete...

The Start of Chronic Pain Symptoms 

Around my junior year of college, I started noticing that I just wasn’t recovering from basketball practice or intramural volleyball games as well.

My strength training programs were suffering.

It also started to feel like getting to class was less interesting than ever before because I simply didn’t have the muscle strength to drag my body and body weight across campus. 

I felt like I had a perpetual flu ache. I didn’t have any energy. 

I was in school, playing ball, training incessantly, going out with my friends, and working close-to-full time.

Shrugging It Off

At the time, I just blamed it on a rigorous schedule, exercises, and, what was probably, not even decent sleep.

It is recommended by medical professionals to get on average 7/8 hours sleep a night. I was getting an average of 5/6 – I was “tired” and “sore.” I pressed onward.

On top of it all, it became difficult for me to hold on to my weight. Over a period of 2 and a half months, I had dropped 30 pounds — for absolutely no reason. 

Most women would be delighted at this and I would be lying to say I didn’t enjoy it.

For the first time ever my quads fit into skinny jeans and I had a thigh gap without trying. 

My college party-self was thrilled. 

Weight Loss

Weight Scale

However, it really was unhealthy because of the rate of weight loss and because I wasn’t eating healthier or strength training and exercising more or doing anything specific to lose weight… it just continued to fall off me. 

My body was actually attacking itself and deteriorating before my own and my peers eyes… 

About three months into these seemingly random symptoms, I got back from a strength training session and practice and felt as though I would never release my hands from a clenched grip. 

Again, it felt sudden and “overnight” to me. 

Can’t Do Usual Activities

I wasn’t able to do strength training or attend practice for a week, maybe more.

I didn’t even go to class, I had so much pain and fatigue in my muscles.

I contacted all my professors and coaches that I was “sick” — thinking it was the flu or mono or something.

Eventually, I got back at it and every time I felt like this, I deemed it as “sick.” Sure it would pass. 

The Diagnosis

Years later, as I reflect, it turns out that what I’d actually been coping with was, Systemic Lupus – that’s right, Lupus. 

Lupus is a chronic auto-immune illness — meaning one’s own immune system mistakenly attacks itself.

This is similar to Rheumatoid Arthritis, Multiple Sclerosis, Hashimoto’s, and even Celiac.

Health Disparity 

Lupus is most prevalent in African American and Hispanic populations, with the majority being women — 9 out of 10 cases are women.

The symptoms of Lupus tend to begin just after puberty. 

About 5 million people worldwide struggle with Lupus.

In the United States alone, there are about 1.5 million diagnosed cases. 

Realization

What made me realize it was Lupus? – a co-worker told me I was “withering away.” 

I chalked the extreme pain, fatigue and deteriorating energy levels to “getting old”. 

I worked an intense laboratory position where I was on my feet all day and handling delicate objects.

I also stayed active by going to the gym to exercise and playing bar league volleyball – I love it and won’t give it up.

I love to get my heart rate up, engage all my muscle groups, and feel strong.

However, my awareness around rest and self-care has improved. 

Symptoms

Tired

One day after work, I needed my boyfriend-at-the-time to carry me out of the car and into a hot shower to rejuvenate my body, but I didn’t get a full diagnosis for another two years. 

When I started seeing doctors, they told me it was early-onset arthritis which is partially true.

Eventually, I was experiencing multiple, chronic symptoms — joint pain, extreme muscle fatigue, back pain, weight loss, intense headaches, and occasional fevers — doesn’t add up to a diagnosis for arthritis only. 

You could have any or all of these symptoms and not have Lupus. 

Getting Diagnosed

At this point, my doctors and I decided to do full blood panels and review my medical history.

It turned out that my frequent “illnesses” from my teenage years to now could have been the onset of Lupus. 

Fast forward to today, every single day of my life, I feel pain from my head to my back, and Lupus flares are almost “normal” to me now. 

It’s been a process learning what I can or can’t do for my health and what I need to clue into closely in order to avoid massive Lupus “flares” that range from unmanageable fatigue, to the flu-like sickness that I was experiencing college.

Staying Active

The happy news is, I have come to find more of a health/physical activity balance.

I am able and determined to continue to play in my favorite bar’s volleyball league, strength training and resistance training, whilst limiting chronic pain as much as possible. 

I’m conscious of the importance of staying in shape and taking care of myself as preventative care for the long-term. 

Types of Lupus 

  1. Systemic Lupus accounts for 70% of cases. Typically, it affects major organs including; the brain, kidneys, or lungs. 
  2. Cutaneous Lupus makes up about 10% of Lupus cases. It only affects the skin — which is, of course, an organ too.
  3. Drug-induced Lupus often looks Systemic, but it developed from mega doses of medications taken by the patient. It accounts for 10% of Lupus cases. 
  4. Neonatal Lupus occurs in infants because the mother’s antibodies affect the infant. Usually, it presents after birth as a rash on the skin. After about 6 months of age, the baby’s lupus symptoms will clear and won’t present again. 

Lupus Symptoms

Lupus Erythematosus
Lupus Erythematosus

The illness is tough to diagnose because it looks similar to so many other diseases.

It’s commonly called, “the great imitator.” 

Many people with chronic pain or illness might find most commonly, joint pain or the back/lower back pain.

Because of this, it is not uncommon for it to be diagnosed as arthritis originally. 

Flares

Other symptoms include: extreme fatigue, hair loss, cardiovascular disease, strokes, loss of strength, migraine, rashes, and flu ache – These systems may also go in waves — known as flares. 

No two Lupus patients experience the Lupus the same exact way. 

Because of the lack of consistency in how the illness presents, it makes the studies and diagnoses that much more difficult to qualify and quantify. 

For more on what Lupus usually are, check out the Lupus Foundation of America

Workin’ it Out

Group Of People Exercising

For those of us with chronic pain and/ or disease, the very thought of exercise can be exhausting. 

Particularly, strength training seems like the worst idea. 

If you’re struggling physically it is tempting and would almost make sense to continue to rest and not strain yourself more. 

NOTE

However, studies show, lupus and arthritis/ chronic pain patients tend to be at a higher risk for cardiovascular disease because of habitual lack of activity or exercise programs. 

Physical benefits

Exercise can benefit the immune system and decrease inflammation.

Both of these factors (the immune system and inflammation) would normally intensify Lupus symptoms. 

So – exercise is key as it helps prevent flares over the long term! 

How Exercise Can Help

Exercise is energizing and stimulates all the body’s systems — increasing the heart rate, stimulating muscles, and training movement patterns.

Consistent, daily movement will reduce fatigue and boost the immune system while decreasing inflammation because lymph is being moved through the body rather than stagnating.

Strength to support joints 

Participating in strength training or resistance training exercises support the joints which in turn reduces joint pain. 

Strength training maintains muscle groups mass with free weights, plyometrics (body weight), machines, and resistance bands. 

NOTE

Be sure to tune in to yourself.

Know the subtle difference between discomfort and pain.

Acknowledge the energy that your body and muscles have for that day and that strength training program.

Low-Impact Cardio

Lupus can lead many people to cardiovascular disease so it is important to keep heart health in mind. 

Add in some low-impact cardio such as an elliptical, cycle, or swimming to strengthen your heart, and keep your heart rate healthy without pounding your joints in unhealthy strengthening exercises.

Balance & Body Awareness 

Incorporate functional exercise for more coordination and body awareness. 

Practice yoga, posture awareness, and use stability ball work (i.e. bosu ball squats) to engage your core and muscle groups, reduce back pain, and maintain total bodily control. 

Relaxation and Stretching 

Lotus Prayer Pose
Lotus Prayer Pose

Maybe the most important part of anyone’s workout routine — take time to recover and release muscles.

Stretching activates the nervous system and increases serotonin (happy hormone) to decrease depression and anxiety. 

Mental Benefits 

Speaking of depression and anxiety — 60% of people with a chronic illness also experience clinical depression

More often than not, the emotional and psychological effect of chronic illness or pain is not addressed. 

Exercise, strength training, and gentle movement can help with that because flares are often stimulated by stress built up in the body, it’s important to get some stress-reducing activity. 

Also, exercise is a great way to shake off whatever else is going on in your life and reset your mind. 

Preventative Care

A final benefit to keeping exercise as part of a regular regimen is preventing side effects from medications including Prednisone which can cause weight gain and increase blood pressure, cholesterol, and blood sugar. 

As we all know, exercise and balanced nutrition is a key component of living a healthy life.

When Starting a New Exercise Routine

“I believe it’s important to stay active, whatever level of activity feels comfortable to you” – Shannon Boxx 

Talk to your doctor.

You are unique from the next person with Lupus or chronic pain.

Listen To Your Body

Take care of yourself and determine what types of exercise and how much is appropriate for YOU. 

For me, this meant a lot of recovery for a while.

I needed to tune into myself more intricately. 

Once I was actually hearing and listening to it, I started to add in more activities that I enjoyed — running, yoga, and playing club volleyball.

Activities

Over the last 6 years, I have learned that about three 45 minute exercise sessions with some strength and cardio work well for me.

I can only play one sport league, one day a week.

If I have any big social outings, I know I need to reduce my exercises and other activities.

It all affects each other…

Knowing your limits, the amount of energy you can expend in a given week, and how you can adjust is what it’s all about. 

Slow and Sustainable is the Name of the Game

Warm Up
Warm Up

Build up to physical goals, stamina, and strength. 

Unfortunately for me, I can’t ball out as well as I did in high school.

This is a new journey and a new set of expectations. 

Striking a balance that pushes you while not putting yourself in bed for days is key. 

That balance will look different for everyone (even those without chronic issues). 

Spoonies

In the realm of chronic illness and pain, we are often called “Spoonies.” The theory is that you only have a certain number of spoons to use each day.

The spoons represent energy for tasks that need to be done.
Usually, us “Spoonies” have fewer spoons (energy) than tasks that need to be completed.

Finding balance requires you to take everything into consideration and set yourself up for success.

Managing your Spoons

I like to look at it through three lenses — today, the week, and foreseeable future. 

If I want to go super hard and play my heart out at exercises or volleyball this week, then I know I need to pull back in some exercises.

If I have a big week at work, with lots of presentations, that might also cause me to reduce my exercises or skip a social function.

When I have let my ego get the best of me and commit to too much, pushing myself beyond my spoon allotment, I typically know I will experience a flare.

Flares

The flare is usually not that long after — maybe two days tops. Then, I am down for the count for a minimum of three days and might not fully recover for a week. 

Doing this sets everything back — which for me is more annoying than managing my energy, and symptoms in the present and being preventative.

Being active and healthy for the rest of your life should be the ultimate goal.

It’s all about that long game. 

Keep an Exercise Journal

Writing on a Journal

I never did this when I was a two-season athlete, but it is valuable for me now. 

Make notes about health and how you are feeling that day. Write down strength and cardio exercises that felt awesome OR didn’t.

Remind yourself how you feel after exercises so that on days you are resisting it, you go anyway. 

Remind yourself of the strength that lies within you! 

Notice any trends that you see over time.

Craft exercise plans that truly support your life with chronic pain and illness and allow you to thrive — instead of burn yourself out via unneeded exercises and training.

Do What is Best for YOU and YOUR Body

Consult with your doctor on how a fitness routine, with cardio,, resistance training/strength training and stretching exercises, could help you with your pain/ symptoms – and overall health,

Workout

Anyone starting an exercise habit, strength training routine, or turning up their exercise intensity, will find it hard – you will be sore. 

However, the long-term benefits outweigh the soreness. You will get better. 

You will even come alive — feeling stronger and more empowered in your body. 

My weekly exercise program for chronic pain:

  • Monday, Wednesday, and Friday at 5:30 pm
  • 20 minutes of cardio on the elliptical or uphill walking on a treadmill
  • 25-30 minutes of strength training — I like two days of lower body and one day upper body.

I use this one because you can search for programs based on your goals, level of fitness, and weekly schedule. 

Stretch 

Two Women Stretching
Two Women Stretching

Combat the muscles soreness from training with rejuvenating movement.

Creating suppleness in your muscles and fascia can help diminish fatigue. 

Benefits of Stretching

Stretching brings people with chronic pain more blood flow into the muscles and joints which allows more oxygen and vital nutrients to transport throughout the body.

It also serves as a way to eliminate anything unnecessary — such as; carbon dioxide, lactic acid, ammonia, and uric acid — that could be causing inflammation and stiffness.

Improves Training

It will allow your strength training and resistance training to be that much stronger and better because you will have more strength from being recovered. 

Slowing down for gentle stretching and movement has also been shown to improve mental health — including depression, a common by-product of chronic pain. 

Rest

Staying active means finding rest and knowing your limits. 

Resting is a key part of health. 

Your body needs time to rebuild its strength and re-energize. 

For chronic pain and illness, it’s even more essential. However, don’t use it as an excuse to do nothing or avoid exercise. 

NOTE

Remember, we are managing symptoms and stress and preventing other health issues from arising. 

Personal Rest Routine

My rest routine looks like a set nightly bedtime to ensure I get 8 hours of rest and repair during sleep.

I am not much of a napper, but one thing I do is take 20 minutes in the afternoon to recoup with some tea and a little quiet, meditation time. 

Planning Ahead

I also plan a day a week of limited activities where I can enjoy the day without any extra stress. I am able to chill — wakeup slowly, take care of the house without speed or an agenda, watch a movie, or scroll Pinterest. 

That downtime has added energy to my life that I forgot was possible.

Before, I’d been running myself ragged — constantly doing things and thinking that I SHOULD be able to accomplish it all, all the time. 

Rest is Essential

Sleeping
Sleeping

Now, I recognize that resting is a gift that keeps giving so I can pursue my workouts, strength training, sports, life activities and work with the focus and energy I want to give them. 

If you are struggling with chronic pain or illness, I hope that you found some truth, inspiration, and nuggets that resonated and comforted you. 

If you have questions or want to connect about Lupus, chronic illness, chronic pain, or anything exercise, hit me on <<Instagram>>. I’d love to chat with you!

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Steph Boll
Steph Boll
Founder of Spikes & Heels. I'm on a mission to show the reality of women's fitness. Red faces, blotchy skin and sweaty hair is my everyday look and I'm proud of it! 😅