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Living with Parsonage Turner syndrome

living with parsonage turner syndrome: Ali

For those living with Parsonage Turner syndrome, daily tasks that most of us take for granted can become increasingly difficult over time, as weakness, atrophy, and pain interfere with everyday tasks. Parsonage-Turner syndrome (PTS) is an uncommon neurological disorder characterized by rapid onset of severe pain in the shoulder and arm. This acute phase may last for a few hours to a few weeks and is followed by wasting and weakness of the muscles (amyotrophy) in their affected areas.

Parsonage-Turner syndrome involves mainly the brachial plexus, the networks of nerves that extend from the spine through the neck, into each armpit and down the arms. These nerves control movements and sensations in the shoulders, arms, elbows, hands, and wrists. However, other nerves in the arm or even the leg can also be involved. Whilst not much is known around the causes of Parsonage-Turner syndrome, researchers suspect that most cases are due to an autoimmune response following exposure to an illness or environmental factor. I

In studies conducted with those living with Parsonage Turner syndrome, for many, there was no triggering events or an underlying cause that could be identified. However, certain factors known to trigger some cases include:[1][2]

  • Infections (both viral and bacterial)
  • Surgery
  • Vaccinations
  • Childbirth
  • Certain medical procedures, such as a spinal tap or imaging studies that require administration of radiologic dye
  • Strenuous exercise
  • Certain medical conditions, including connective tissue disorders and autoimmune disorders
  • Injury

Whilst the exact cause of Parsonage Turner syndrome is not known, we do know that the effects can be incredibly debilitating and cause much distress. The severity of the disorder can vary widely from one individual to another, due in part to the specific nerves involved. Affected individuals may recover without treatment, meaning that strength returns to the affected muscles and pain goes away. However, individuals may experience recurrent episodes. Some affected individuals may experience residual pain and potentially significant disability.

It was in 2017 that I first heard the words Parsonage-Turner syndrome when my client Alison first came through the studio doors and considering we both had no idea what to expect when working together, she ended up doing incredibly well, and the whole experience was a fantastic learning curve for the both of us.

Alison had one goal in mind when she stepped into the studio, and that was to regain some function in her upper body and be able to breathe properly again. Whilst our expertise is around conditions such as fibromyalgia and Hypermobility, I did notice a lot of commonalitles between PTS and how we work with those with Hypermobility syndromes in the studio. I set about finding out as much as I could about those living with parsonage Turner, and slowly tweaked our hypermobility framework, to help Alison better connect to her tissue, and we started on the mammoth task that was restoring her functions.


The following is from Alsion about living with Parsonage Turner syndrome:

My world was turned upside down last November when I felt the start of the symptoms that were to rule my life for the next six months.
I was travelling to my son’s house when I noticed that the steering felt heavy on the right side, so I pulled over and checked the tyre pressures, however they felt fine and I dropped the car off at the local garage. The very next day the garage confirmed that there were no issues with the car and that the steering wasn’t heavy as I was describing.

A few days later I noticed that my lungs felt like they had popped when I tried to walk to the car park after work. I could see the car but couldn’t reach it, as I just couldn’t breathe. My GP prescribed antibiotics and said it was a chest infection and possibly trapped nerve in my shoulder, recommended that I come back on Monday if I felt no better. When I returned to see a different doctor, he sent me for an x-ray.  The next day the new doctors phoned with the results  saying “I’m sorry but I’ve never seen anything like this before, I don’t know what to do and will have to ring the hospital consultants as your liver is halfway up your chest on the right side”

Obviously, I was in utter disbelief, and I remember thinking how was this even possible?

Over the period of the next couple of months, my pain levels in my arms and shoulders reached about 9 out of 10 every day and I couldn’t lie flat to sleep. My mouth felt like I had the worst toothache ever, and I suffered gastric reflux with a very dry mouth and total exhaustion. The use of my arm was getting more limited every day and by Christmas, I couldn’t use a knife and fork as the nerves to my hands were losing their ability to send the signals to enable me to move.

I was told that I had to have a CT scan but I couldn’t lie flat. They managed to prop me up a bit and I managed. This showed that my diaphragm was raised on the right side squashing my lung into a tiny space. There was a shadow on my other lung and my liver had a cyst on it and just in case that wasn’t enough I have a 3cm nodule on my thyroid. Ok, so what are you going to do about it? Nothing till you see the consultant was the response.

I was soon referred to a Gastro Intestinal specialist who told me they deal with below the diaphragm and my biggest problem was above. I was told that I would have to wait to see a Respiratory consultant, but he would ring Freeman Hospital to see if they knew what was going on with me. “She has a bilateral paralyzed diaphragm” was the response  I was told that it could be Neuralgic Amyotrophy. I soon began searching the internet and read many sorties from people living with Parsonage Turner syndrome.

Neuralgic Amyotrophy, can be caused by vaccinations, injury, or as probably the case for me – exposure to a virus. It is a rare autoimmune condition where the body attacks itself. Doctors knew nothing about it – hardly surprising as it is known by different names Brachial Neuralgia, Neuralgic Amyotrophy or Parsonage Turner Syndrome. I’ve never met anyone else with it but due to finding a support group on Facebook I now know more about it than my doctors do. It is a nightmare when different parts of your body are affected as our NHS carves you up into different bits and doctors only know their little bit. So far, I have seen Gastro- Intestinal who rang Cardio Thoracic, Respiratory, Endocrine, Neurology and Oral. They insist it is a one-off event yet there are people out there who have repeat episodes. I’m hoping I’m not one of them!

A friend with Fibromyalgia told The Fibro Guy team, who work with those with chronic conditions and who had personally transformed her life, and if nothing else, I should at least speak to them.  When I discovered that my local studio was only five minutes from my home it seemed like it was meant to be, so I emailed them with some details of my problems with living with Parsonage Turner syndrome.

Poor Adam didn’t know what to expect when I started as sometimes the nerves just don’t succeed in sending the messages to my muscles, but I sat down with him and we worked together to formulate a blueprint so I could regain my function.

Our journey together was a huge learning curve, not only for me but for Adam as well. However, he kept tweaking my programme until we found what worked for me. He is patient and funny, and I enjoy every minute of our sessions. Considering I was nervous about rehab in the first place, it has actually been really enjoyable progress, and I already feel so much better. I am struggling to lose weight as I am now trying to rebuild my muscles that are atrophied due to the condition. I am losing inches though and my pain is now 1 most days with the odd one that reaches maybe 5.

That is in comparison to constant 9. Mentally, I am so much more positive about getting back to normal and have started fishing again. I am a fly-fishing coach, mainly trying to get more women and juniors into the sport. It is fantastic for anyone who is going through a bad time. You have to think about how to target the fish – where are they swimming, deep or near the surface, what are they eating?

This stops you from thinking about your pain, your woes and what you can’t do! More importantly, it was a huge part of my life and I didn’t think I would ever be able to do it again. I can now. I’m getting my life back slowly, thanks to Adam and my strong will!