About the author
I was learning to live with Post-treatment Lyme Disease Syndrome (PTLDS) when I caught Covid at the very beginning of the pandemic. It was February 2020 and I was in my mid-30s, living in Canada. My symptoms were a high spiking fever, shortness of breath, a sore throat, intense fatigue and brain fog. I could barely stand and began fainting – once, for eight hours as I waited in an emergency room. Staff were overwhelmed and confused, and sent me home.
After three months with Lyme disease, I could walk, dance and mahi | work in hospitality, even if I was in a bit of pain. But once I got Covid, everything became so much worse. I only ever managed to walk a kilometre before fatigue would strike. Brain fog would kick in if I read or worked for more than an hour. I developed fibromyalgia and nerve pain, Chronic Fatigue Syndrome, viral arthritis, irritable bowel syndrome, acid reflux, hair loss… every month, it was something new.
It’s taken three years and a lot of work to slowly recover to who I am today. First, I had to accept that I was now disabled and mourn the loss of who I was. Then to accept this new person and learn who the new ‘me’ is. The last step was to learn to manage my life. It’s an all-consuming task and it all adds up: what I eat, how much I mahi work, how much I walk or swim, how I whakatā | rest afterwards.
This effort and an 18-month regime of herbal supplements has helped to slowly move the needle for me. I’m finally able to swim, walk more and dance, but always with careful planning and pain-management tools. The pain in my muscles and nerves never goes away, and leads to intense brain fog if I can’t moderate my days.– Non-binary, Indian, Pōneke/Wellington
A brief explanation of nerve pain
Two of the most common Long Covid symptoms are pain and fatigue. Some 25–50% of all patients suffer from musculoskeletal pain. For most people suffering from this, the symptoms are consistent with fibromyalgia.
Research now shows there is a strong connection between Kowheori Roa | Long Covid and nerve damage, causing pain, numbness and sensory changes. This could be due to immune dysfunction caused by the infection. This dysfunction creates massive inflammation in our bodies that could be triggering nerve pain. Even viral proteins left over from a Covid infection could be causing a prolonged immune response.
Although Long Covid has made pre-existing pain conditions worse, some studies show most individuals had no pre-existing, chronic, widespread pain. For those who have pain consistent with fibromyalgia, muscle pain was the significant feature, followed by fatigue.
Some Long Covid sufferers have been diagnosed with “frozen shoulder” with severe pain and limited movement in one or both shoulders.
In my experience
Nerve pain/fibromyalgia is a constant, nagging pain that flares up when I’m more active or lift heavy things. Even just sleeping at the wrong angle sets it off. I’m in pain 24 hours a day. Most of us ‘get used to it’, but it takes a huge toll on energy levels. I barely slept for the first two years because of pain and intense restless-legs syndrome.
If I haven’t rested my body enough, I’m stressed or I do too much, fatigue comes on quickly and brain fog sets in. When this happens, all I can do is get home right away and whakatā | rest. I am hyper-vigilant about this, because it’s really scary to be out and feel confused and disoriented. I often forget what I was just about to do and struggle to read. It’s like I have cobwebs or cotton in my brain, and I can’t see clearly through it.
If I have an injury, that pain triggers more pain. It’s such a long process to try to calm the nervous system down while trying to rehabilitate the injury.
The doctors don’t have a clue what to do other than prescribe medications for symptoms. My referrals to specialists often get rejected as they think I’m imagining all of it because of anxiety. I always ask how they expect a 38-year-old not to have anxiety when I am in constant pain. Moe | Sleep is a struggle and I deal with all of this while having to support myself.
Muscle and nerve pain has completely changed my life. The constant pain drains my energy and when fatigue hits, it’s nearly impossible to do anything. For two years, I had to spend at least two days a week in bed because I was unable to do anything. Cooking for myself, and even just reading, would often be too difficult. I can’t work full time if my needs aren’t accommodated, which means I have significant financial issues and anxiety.
What others say it feels like
Others in New Zealand’s Kowheori Roa | Long Covid community experience varying levels of pain and disability. Many get excruciating joint pain that can leave them unable to walk or drive. Some have cramps and sharp muscle pains, “like being stabbed with a knife” and “like a million tiny electric shocks”. Regular pain medication doesn’t help.
Some get intense, sharp pains and restlessness that usually starts early in the evening and gets worse at night. Often, the pain is so intense in the hips, neck or ribs that it’s hard to even lie down.
One sufferer says, “I wake up and wish I wasn’t awake because of the aching pain from hips to feet. The pain makes me nauseous, and makes it very difficult to get out of bed and get the kids up for school.”
Many experience pain in their fingers and toes, and have arthritic symptoms which includes reducing grasping ability and stiff joints. There are cases of inflammatory arthritis that started following a Covid infection.
Many people in New Zealand’s Long Covid community cannot work anymore. They rely on benefits and the limited disability support provided by the government. Some cannot spend the same amount of time as they did before with their tamariki | children, partners and family. This has led to rifts with loved ones. Not everyone can understand when you need to cancel or change plans because of a pain flare-up or intense fatigue.
What I and others have tried
I have had very little medical support so far. I have spoken to specialists overseas, who can’t offer much āwhina | help remotely. Taking Pregabalin every night has finally allowed me to get some sleep, which has helped significantly.
For me, the most useful thing has been a range of herbal supplements I get from an American company called Vital Plan. They are formulated for people living with the long-term effects of Lyme disease, but I believe it could also be a huge tool for recovery for those with Long Covid. It focuses on improving your body’s immune system and repairing cells and pathways, rather than just focusing on symptoms.
Most people in the community use a range of pain relievers and supplements to help manage pain and fatigue. CBD oil is a huge āwhina | help for many. They also find a combination of these things helpful:
- Change your diet to reduce inflammation. This is an important part of recovery. A plant-based diet is hugely helpful if you follow it in a holistic way. Instead of swapping to processed vegan foods, focus on whole foods – or perhaps try a diet that is mostly plant-based, such as Mediterranean or Indian. If you do this, check key vitamin levels in your blood tests every year.
- Managing stress is really helpful for managing pain.
- Put epsom salts in your bath.
- When possible, go for massages and acupuncture.
- Hydrating and resting are key tools in pain management.
- Trying cognitive behavioural therapy or trauma-management support can help significantly.
- Set up your workstation ergonomically.
- Sleep in a medium-firm bed with a pillow that supports the curve of your neck without raising your head too much.
The best advice I received
Whakatā | Rest and to be kind to myself for not being able to do everything I want to. It’s not about beating the pain, but managing your days so you can keep being functional.
Unfortunately, fibromyalgia is present all the time. Sometimes you can anticipate the flare-ups, but often it’s hard to know when it’s coming on. Then it’s too late. The key is to listen to your body. If you feel the pain increasing or some extra tiredness, do something about it right away. Rest, medicate, get support.
How others can help
Understanding and accommodating is the best way anyone could help me. It’s hard to have an invisible disability where people just focus on how you look and not how you feel. Only a few friends will alter their plans for the day or change days just to support me, and still include me in their life. I’m very grateful for them.
Another way people can support me is to not throw toxic positivity at me. It’s hard to hear people say I should make up my mind to be positive when this is an everyday struggle. You can’t will away a disability with positive thinking.
Fibromyalgia is a nervous disorder that causes musculoskeletal pain, and is often accompanied by fatigue, cognitive impairment and sleep disruption. Research shows this happens because your brain and spinal cord become more sensitive to sensory input (it’s called nociplastic pain). This amplifies the feeling of pain.
Nerve pain/fibromyalgia is a long-term condition that changes based on various factors such as stress, mahi | work and weather. Often, it’s accompanied by irritable bowel syndrome, tension headaches, muscle tension, anxiety and depression.
The main symptom is pain that is widespread and present all the time. Pain may start in one area but it can transfer to other areas. Most people experience nerve pain along with fatigue, which can be severe. It can overtake you and lead to brain fog, which is called ‘fibro fog’. There is research to show it also leads to issues with memory, concentration and decision making. Most people report very disturbed sleep, because of increased pain and restless-legs syndrome. This leads to more fatigue.
There is no cure for nerve pain/fibromyalgia, only a range of medications and lifestyle management techniques to control the symptoms. Medications aim to reduce pain and improve sleep; they include pain relievers, antidepressants and anti-seizure drugs. Physical therapy, occupational therapy and counselling can significantly improve symptoms.
How is fibromyalgia diagnosed?
In the past, doctors used a tender point exam to diagnose fibromyalgia. Now, the criteria for diagnosis is to have pain in at least four of the five listed areas:
- left upper region, including shoulder, arm or jaw
- right upper region, including shoulder, arm or jaw
- left lower region, including hip, buttock or leg
- right lower region, including hip, buttock or leg
- axial region, including neck, back, chest or abdomen.
The symptoms should also be present for at least three months. There is no blood test, X-ray or scan for this diagnosis.
Top 5 things to try
- Rest: lie down somewhere without too much noise or light.
- Medication: use pain relief and don’t hesitate to call your GP or Healthline if it gets too much.
- Stay warm: cold and humidity are not your friend.
- Baths and ocean swims are therapeutic.
- Have a massage, physiotherapy, acupuncture or some other type of body work.
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