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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!

22 Replies to “Living with Parsonage Turner syndrome”

  1. Well done you two glad your nearly fixed Ali my turn next xxx

  2. You are doing a great thing helping people who can feel forgotten/let down by our wonderful health service. Chronic pain can destroy a person’s spirit. Keep up the good work and start to train others to spread the word too….

  3. You are doing a great thing helping people who can feel forgotten/let down by our wonderful health service. Chronic pain can destroy a person’s spirit. Keep up the good work and start to train others to spread the word too….

  4. I’ve had PTS for 2 months now. A week of pain followed by not being able to lift my left arm followed by the pain level you described as 9. Really incredible. By week 6 I was able to discontinue ibuprofen. I’m in physical therapy, massage therapy, and will be starting acupuncture in a few days

    I’m amazed how tired I have become even though I now am able to get normal sleep.

    My experience has not been anywhere near as severe as yours and I wish you a complete recovery. I still cannot raise the left arm but hope for the best. Since I am (was) a violinist it’s psychologically painful but I’ll get over it

    I’m fighting hard and attitude is important. Nerve tests have shown 2 or 3 important nerves are not functioning. I will post occasionally to show progress. Perhaps it will be helpful for others just as your post has been helpful to me!

    1. What are the names of any online or Facebook groups? I’ve just been diagnosed and want to find out more about it from the people who have experienced it! No one seems to know much about it.

  5. The pain is incredible. I got it across both shoulders and down both arms. Started abruptly one morning as I got out of bed. Long story short 3 months later, after seeing an orthopedic surgeon, a neurologist and after brain scan,cervical X-ray, cervical MIR, brachial plexus MIR with and without contrast, an EMG I was finally diagnosed with Parsonal-Turner syndrome. I have been in physical therapy and still have neuropathy in both hands. I have muscle weakness in both arms and lost range of
    motion in right arm. Even my legs were affected with weakness. I hardly slept the first two weeks. I can’t even explain the pain, it was excruciating and debilitating. One could become suicidal if it lasted at that level. I am hoping to rehabilitate quickly because I was in very good physical shape. I am 82 years old which is kind of weird to get this at this late age.

    I wish for everyone to recover quickly. If you do acupuncture let me know if it works.

    1. It would be great to read about your journey. I am lucky to have had Adam pushing me along the way and now find I have very little that stops me doing something that I really want to do and I am pain free. Keep going ! PTS is a horrible condition but we can beat it eventually

      1. They have finally confirmed PTS which I have been suffering with since April. Curious if anyone else also had thyroid issues? Seems odd to read that since they say it isn’t related.

    2. Everything you described is the same exact thing that is happening to me my age it started at age 58

  6. I was diagnosed with PTS last week. Exceutiating pain down my right arm and across the back of my neck with lying down. Also quite a lot of weakness in my right arm. I used to be a gym bunny (even though I’m now 58) so hopefully that will help. I have had a Mastectomy and chemo for breast cancer this year which I sailed through but 3 days into radiotherapy I woke up with this intense pain. Now I’m sleeping in a garden chair so any tips on sleeping would be good please?

  7. I’m 15 months in with my pts, got drop wrist on my left hand (I’m left handed) the pain in my fingers, wrist, elbow and shoulder is a steady 6 and it never stops 24 hours a day 7 days a week, doctors have tryed all sorts of pain relief and nothing works, and to make things worse 2 different consultants at Salford royal hospital have said it’s gonna be like this till the day I die, all because I had the flu jab

    1. Dave I also have a wrist drop as a result of parsonturner syndrome…ifeelfor u…its so freaking tough…how are you..how youget on withyour day to day life?

    2. Dave-how are you now? I have pts since January last year also with dropped wrist on left side..im 35 year old and feel so utterly helpless and desperate for a miracle to happen. How is your pain and your wrist? I only got diagnosed 9 months into it all as they could not figure out what it was ..and not a single session of physio was offered! I am self searching for recovery methods..i tried so many things…please let me know how you are..im based in leeds.

  8. My dad had parson Turner syndrome four years ago. I was wondering if anyone has had the covid 19 vaccine .

    1. My PTS started 2 days after my second dose of the covid vaccine and lasted 3 months. I got it again after getting covid 9 months later. It went away after 5 months and just a few days ago it started again. The pain is so intense and nothing helps.
      I am 39 years old.

  9. I’m (5) MONTHS in now and past the worst (so I hope). First TWO WEEKS of 7-8-9-10 PAIN PAIN!!
    I had no clue what was happening to me the first and second dsy. After a Dr visit he had no clue. Went home and hit up google and punched in “armpit pain” and little by little I came across 3-4 terms I’ve come to learn mean all the same. BRACHIAL NEURITIS explained EXACTLY what I was experiencing.
    Mine has been textbook……(2) weeks of extreme pain and next (1) month of 3 to 6+ pain and discomfort. And since a SLOW SLOW SLOW recovery to now left hand (especially ring and pinky fingers) weak and SLOWLY getting back to better.
    Still can’t play all my chords on my guitar, still can’t swing my golf clubs like I can and lifting my weights are still stage by stage.
    But the Fing PAINNNN is gone except for lingering pain here and there with a SPIKE every once in a while!!!
    Good luck everyone!!!
    Had NO CLUE this was a thing……but now know I’m part of a Shared Experience Group

  10. Hi I got parsonage Turner syndrome after the vaccine. March 31.2021.

    1. Yes! It developed several weeks after the booster shot. It’s been 3 months now. I take Celebrex daily and some days a pain pill. I can function ok, but problems with my arm around my back like putting on a jacket. Sleep is disturbed with discomfort in moth shoulders. I wake up with pain and stiff fingers. I’ve just started physical therapy and praying for better days ahead.

  11. I believe that I got PTS right after I got my second shingles shot October 2021. I had pain in my left shoulder for about a week. My Primary Doctor diagnosed it as a rotator cuff tear. When I then went to an orthopedist, upon telling him I had received a Shingles shot, and failing the arm raise/drop test, he immediately diagnosed it as Parsonage Turner syndrome. I then got an MRI and confirmed no through rotator cuff tear. I then got a EMG nerve study and found out that 4 nerves of the brachial plexus network were compromised on my right side. These were the Musculocutaneous, Axillary, Median, and Radial nerves. 5 months later, I can only move my right arm about 45 degrees up, and out. The good news is that I no longer have any pain, just loss of motion. I also cannot lift more than about 5 lbs with my right arm. I workout at a gym three times a week just to try to maintain muscle tone although I can’t lift nowhere as much as I used to, and my right bicep has shrunk a little. Going to a chiropractor today to see if he can determine if there is any impingent between C5-C7 where these nerves pass through. If that doesn’t work then I might seek out an acupuncturist. Can anyone else relate to this scenario???

  12. I was diagnosed by the neurosurgeon who had done my cervical fusion( due to nerve compression from a MVA 2 1/2 years ago)
    He asked when I’d had Covid or the vaccine.
    I had Covid and FluB together Jan. 12th.
    Excruciating pain woke me at 3am March 25th. I’m still in the chronic pain stage but with Torodal and Gabapentin and after lots of steroids, it’s almost bearable.
    He told me that I was the 2nd post covid case of PTS he’d seen that week. I started PT right away. I know I’m not at the point of knowing what nerves are affected. My EMG and MRI are tomorrow. But the instant I noticed the loss of movement in my hand, I started pushing myself to regain nerve communication and I’ve seen improvement. If you’re still in the acute stage- give in and take the pain meds. Then start right away retraining your nerves. Neuroplasticity is a fact and I want to prove it can work if started in the acute stage.
    I’m also interested in anyone who contracted PTS following Covid or Flu vaccine or after having Covid or FluB.

  13. Going on two years after PTS after being misdiagnosed that required me to take a chemo pill for seven months. After a variety of electric pulse tests measuring nerve damage, along with scapula atrophy, lost use of arms/shoulders, stiff index finger, and of course 9/10 pain… a neurosurgeon finally confirmed PTS. For me, due to never damage on both sides, I was not able to get in the water again (I enjoy ocean swims) below my neck. The pressure was unbearable. For the first time, I’ll take a flight after being told by doctors that I ‘shouldn’t’ have any issues. 🙂 What I’d like to share with any newcomers to PTS, you’ll survive the few weeks or more extreme pain. I was hospitalized and afterward up every two hours taking meds. Equally important, when on the other side of the pain, get going with physical therapy!!! It’s no fun watching muscle evaporate. But don’t overdo it. Even today, I lift weights nowhere close to what I once did, but I keep going with the little that I can. That’s what’s important. Keep moving forward. Thrive everyday!

  14. Had PTS about 3 yrs ago. I had rotator cuff surgery and was in PT when it hit. I spent a month trying to get a diagnosis. This autoimmune came right after I was in the hospital with divaticulitis and I had a severe cold at the same time. Hence the viral infection and bacteria infection caused the autoimmune symptom to attack according to the second Orthopaedics surgeon I visited. After more PT and an exceptional neurologist my current condition consist of numbness on the top of both hands but not on the bottom so I can still feel. I have had all my Covid shots plus both boosters with no reactions. I am 75 and blessed that I did not experience the severity of many others.

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