By Dave Williams, PhD

It is tempting to assume that symptom flares of Fibromyalgia (FM) would be associated with the stress of national emergencies. But data suggest otherwise.  For example, during  911, individuals in Washington DC  who had FM, reported no worsening of pain in the days following the disaster compared to the weeks prior. ¹ Thus simply having a national crisis does not predict worsening FM.  Flares in FM are more closely tied to an individual’s daily routine than to any given news event. The Coronavirus is a different type of crisis, however.  It does directly impact people’s daily routine.  It contains elements of anxiety over health risks, behavioral and social disruption, and uncertainty. The combination of these elements can make a recipe for worsening FM symptoms because the crisis can affect people at the individual level.

During times of crisis, individuals with FM tend to rise to the occasion in order to protect loved ones from adversity and to do what it takes to promote the welfare of their neighborhoods and communities. While such a community focus is laudable and even expected, it can also mean that routine self-care gets disrupted or abandoned. Disrupted routines result in symptom flares which unfortunately diminishes the capacity of people with FM to be helpful and to deal with the health crisis effectively.

Much of self-care for FM requires maintaining routine bodily rhythms such as having regular sleeping and waking times, pacing one’s self through daily tasks, practicing mindfulness or yoga, and eating a healthy diet.  During times of crisis, these routines can get disrupted resulting in behavioral overdoing, no relaxing balance to the stress of the crisis, and less restorative sleep. It can seem like just when you need to function most, FM makes it impossible.

So that you can be maximally effective in helping yourself and others, maintain as much consistency in your daily routine as possible. For example, if you’ve been exercising at a gym, be sure to continue that routine even if you must be creative and adjust to exercising in your home. Similarly, you may need to practice yoga or meditation at home rather than in a group setting. The key is to maintain your body’s rhythm of health.  When following a routine, your body learns to adjust to the demands you make of it. Suddenly changing that rhythm can cause a flare of symptoms.  FM does not like surprises.

If you’ve fallen off of your routine and need to restart a body rhythm for pacing, sleeping, or meditating, you can usually re-establish a rhythm if you are consistent for about 8 days. For more ideas about how you can take control of some of your FM symptoms see Lynne Matallana’s article, “Taking Charge, Despite Coronavirus”.

Finally, we don’t know how long our lives will be disrupted by this virus.  Thus, it is more important than ever to establish healthy routines and rhythms that can be used over the long haul.  Just like when you are on an airplane and get instructed to put the oxygen mask on first before helping others, taking care of yourself with healthy routines first can facilitate your participation in efforts to deal more effectively with the national health crisis.

References

1. Williams, DA, Brown, SC, Clauw, DJ, Gendreau, RM (2003). Self-reported symptoms before and after September 11 in patients with Fibromyalgia. JAMA, 289(13), 1637-8.

Here are some ideas to help you to reduce your stress, boost your immune system and keep yourself safe during the Coronavirus pandemic.

By Lynne Matallana

STRESS REDUCTION:

Stress can have a direct effect on our physical and mental wellbeing. Stress can turn on our bodies  fight or flight response, which is defined as,  “A physiological reaction that occurs in the presence of something that is terrifying or perceived to be terrifying, either mentally or physically.”1   When the mind accepts something as being terrifying, the body releases certain hormones to activate the fight or flight response. Next the sympathetic nervous system takes over, causing physical changes in your body that prepare you for either fight or flight.

When dealing with a chronic illness like fibromyalgia, our stress system can often be activated over long periods of time. Add to that situation, the addition of other stressors, like worrying about or dealing with the coronavirus, and the release of additional stress hormones can increase heart rate and make you breath too fast. Overall, your bodies reaction to stress can put more wear and tear on your body making you more prone to illness.

People with FM, often are told about the importance of taking time to focus on ourselves, meditate and calm our minds, think about things that make us happy, and to relax and practice slow mindful breathing.  These things may sound unimportant when you are in excruciating pain or feeling panic over a global crisis, but science shows the value of reducing your fight or flight response in order to help your pain, fatigue and help support your immune system.

Here are some stress reducers:

• Get in a comfortable position and listen to music that brings back happy memories or makes you feel good.
• Find a coffee table book that you haven’t looked at for a while and get engrossed in the pictures and the story the book tells.
• Reduce the amount of time that you spend listening to “bad news”. Yes, we all want to stay informed, but when you feel yourself becoming worried or angry about the information on the TV or internet, step away!
• Open your bedroom window in the morning and listen to the sounds of nature or if you hear cars and people, know that there are others, just outside, living their lives and you aren’t alone.
• Picture things that are outside your home that make you happy, like the flowers that will soon be blooming or the sun shining down on the trees in your yard.
• Take time to take a long bath or shower. Let your mind focus on the water running over your body and think of it as a healing elixir.  Don’t let you mind go to anything that causes worry. Instead think of other bodies of water like a babbling brook, ocean waves, or the beauty of a waterfall. Force out of your mind negative thoughts.
• Take 10 to 20 minutes, two times a day to meditate. If you aren’t comfortable with meditation, just sit in a quiet place and tell yourself a happy story or create a positive thought that you can say over and over to yourself.
• Take part in a hobby.  Draw or paint a picture. Do some gardening.  Play with your dog. Learn to knit. Start a journal or scrap book. Be creative and keep your mind feeling calm and inspired.
• Write a real letter to a friend. Not on the computer or your phone. Take a piece of paper and tell your friend all the good things you can think of. Let your friend know that you are thinking about them and that you care about them. (Doing for others is a great way to take your mind off of your worries.)

BOOST YOUR IMMUNE SYSTEM:

Even though FM isn’t an auto immune illness, many people with FM do have overlapping conditions, such as Lupus, Rheumatoid Arthritis, Crohn’s Disease, Celiac Disease, etc., that are auto immune diseases.  We also know that people living with chronic illness often have stressors that affect the immune system. With a highly contagious virus, like Covid-19 spreading quickly across our globe, it is imperative that people with illnesses like fibromyalgia do everything they can to take steps to boost their immune system.

• Get enough sleep and take rest periods to relax your mind and body throughout the day. Most of our healing takes place at night when we are asleep. It is imperative that we make every effort to get as many hours of sleep as possible (7-10 hours a night is recommended).
• Stay hydrated by drinking water and hot liquids throughout the day. Drink hot water with lemon and honey in the morning and at night. The lemon has Vitamin C and the honey has antibacterial properties.
• Try to eat fresh vegetables and fruit daily.
• Spend time outdoors and enjoy nature. Studies show that spending time among trees and plants can boost your well-being.
• Do some type of movement or exercise ever day. Stretching, walking, swimming, yoga, Pilates- really any kind of movement is helpful.Keep up your personal hygiene, especially oral care. The mouth can be full of bacteria, so the cleaner the mouth, the less chance of diseased spreading from the mouth.
• Eat organic foods whenever possible and foods rick in probiotics.
• Laugh! And laugh a lot!

KEEP YOURSELF SAFE DURING THE CORONAVIRUS PANDEMIC:

I’m sure you have heard many of these suggestions recently, but it is always good to be reminded!

~ Wash your hands constantly!  Use hand moisturizer because you don’t want bacteria to get into the cracks of dry skin.

~ Use disinfectant on hard surfaces in your home and car.

~ If you sneeze or cough use a tissue and then throw it away and wash your hands or use your elbow. (Remember the virus can live on clothing, so washing clothes often is now important).

~Practice social distancing.  If you have to go to a store or pharmacy, stay at least 6 feet away from other people.

~ STAY AT HOME!  If we can reduce the spreading of the virus, lives will be saved and we can flatten the curve!

References

Anahana Wellness, https://www.anahana.com/.

To view the full presentation, go to:  https://www.northwell.edu/coronavirus-covid-19  and scroll down to the Infographics Gallery

I have been a Fibromyalgia sufferer for seven years, and can proudly say I had my Fibromyalgia well under control before I contracted the Coronavirus.

My symptoms for the virus were easy to separate from my Fibro because it was new, it was a feeling of illness I’d never felt before. And as my symptoms worsened and my Fibromyalgia kicked into play, it was unfortunately very easy to separate the two.

Day 1

I felt normal when I awoke. But just after lunch time I started dry coughing. As the afternoon went on, it got worse, and by evening I was experiencing the most horrendous headache with pains behind my eyes.

Day 2

I woke up at 4 am in horrendous, all over body pain. I felt as if I had been it by something hard all over. My head was pounding, my cough was much worse, and I was experiencing shortness of breath; my chest felt so heavy like I constantly had something on top of me. At times it physically hurt with sharp pains in the ribs.

I could barely stand to walk due to the head pain and shortness of breath. I was taking 100mg tramadol but nothing was taking the edge off. Normally this would give me relief for a few hours in a bad flare up, but this time, it did nothing.

I had a moment of passing out in the afternoon due to the pain when attempting a bathroom run. I and my 11 year-old daughter who was also sick with the virus spent the day lying on the spare mattress on the floor doing coloring with the house in silence as we couldn’t stand any noise.

I admit I spent most of the day crying every time I moved. I knew if I contracted the virus my Fibromyalgia would intensify the pain, but I did not consider it to this level.

By the evening I started feeling a burning sensation in the back of my nose and throat as if I’d been to the swimming pool and swallowed lots of chlorine water.

Day 3

2.30am, I woke feeling slightly better, the edge of the pain had gone, the headache had eased up a bit, the cough wasn’t as harsh, but my chest still felt extremely heavy.

Come the evening, I started to realize the noise in my ears was so loud I could hardly hear. I had gone back downhill again. By 8pm my pain had ramped back up, the headache was back and my cough had come back with vengeance again.  I couldn’t sleep due to the pain. I was up every hour.

Day 4

It was like I was having my second wave now, horrendous pain all over just like a couple days ago but more intense, which didn’t seem possible. I felt like every bone had been shattered, and my chest not only feeling heavy and compacted with my cough causing me pain, but annoyingly feeling like something was there I just could not budge. The strange burning sensation in the back of my nose still lingering. And finding it hard to catch my breath when getting up to move around causing dizziness. And my ears with that strange white noise kinda sensation as if you’re passing out.

I was passing out every bathroom run again, this time I was finding it hard to come back around and started to gag when coughing.

The doctors called every day to check on us, but this day they were so concerned they advised me to call an ambulance. But as crazy as you may think I am, I did not. My daughter has high anxiety, and she goes into shock during blood tests and even stopped breathing on one occasion. To be told that if I got taken to hospital, so would she as she had the virus and we would be separated. I couldn’t bear the thought! She was nearly recovered. I couldn’t put her through that, so I chose to stay at home and still fight this thing.

Day 5

This was the worst and scariest day for me. Kelsie, my daughter, had started recovering, but I was so weak, so exhausted. I couldn’t breath, couldn’t take a deep breath without it feeling like shards of glass in my chest. The cough got so intense I started being sick when coughing. This was the scariest point for me. Being a mum at home in isolation with my 11 year-old daughter trying to stay away from people but not knowing whether to call an ambulance or risk a bit longer. I text my partner in the evening, I said to him I had nothing left in me, I couldn’t do another day like this. I chose to see the night through and make the decision first thing in the morning.

Day 6 (Mother’s Day)

First day I saw improvement! I finally felt slightly better, the cough had eased enough to not be sick and to rest. I finally got some sleep. I still felt so exhausted, but finally felt a tad better.

It was strange waking after a couple hours and suddenly feeling this sense of recovery.

It was like as quick as it came suddenly like the clock of a finger it was suddenly going.

Day 7

More improvement.  Still coughing and tight chested, but finally for the first time, I was able to get up and walk about. It was a massive relief!

It’s been two weeks since recovering, and I just have that another lingering in the chest you expect from a chest infection. My Fibromyalgia has completely gone back to normal, but it will differ per sufferer because it will depend if you suffer with other ailments and also whereabouts you are with your Fibromyalgia.

If I contracted this when I first had Fibromyalgia, this story would be very different. What we have to remember is this isn’t just about the physical exhaustion and pain; it’s about our mental health too. It takes a lot of mental strength to deal with the amount of pain Fibromyalgia causes, let alone battling a virus such as the coronavirus and having to do it all alone, with no help and even continue to raise and look after your children alone.

In seven years I’ve never felt so poorly. I have the flu jab every year, but I barely get any illnesses, bugs etc. Since having Fibromyalgia I always seemed to have an amazing immune system, but this has knocked me right off my feet, and the pain was  unreal and extremely intense. It had pushed me to a point I had reached once with Fibromyalgia.

It’s very important to note that this triggered of a lot of anxiety and fear. Experiencing this amount of pain took me back to when I first had Fibromyalgia. Those days when you never knew when the pain was going to stop or ease up. It made me extremely fearful of it relapsing my Fibromyalgia. I’ve worked seven long hard years to be able to have my life back, manage my Fibromyalgia, start running and exercising again. Being able to be physically active with my daughter and not rely on a mass amount of drugs. I’m a strong willed person but this really scared me. But thankfully I can say being made to rest in quarantine helped me ease my Fibromyalgia, and I can thankfully say my Fibromyalgia hasn’t relapsed!

Kay Breden Age 35
Kent, UK