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Hey thanks for making this video. Like you im a gym rat and have been dealing with this for only a couple months. Im currently still working out but modifying most stuff. My nerves and muscles are not communicating yet but im still doing stuff . Its really depressing having you muscles go away . My bicep gone and shoulder muscles gone . Again thanks for the video

I just wanted to thank you for posting this vlog series. I just got this as a complication of recovering from Covid. I’m in the acute phase still and yes, the pain is almost unbearable. Worst pain I have ever felt in my life. Nothing helps make it better. It’s good to get some info from someone who has been through it, can tell me what to expect going forward, and has some tips on how to recover from it. Thanks so much!

I've had the recurrent form of Parsonage-Turner-Syndrome since i was in my late 30s. Im now 66. Try to avoid getting obsessed and understand that everyone recoveres differently.

I have Parsonage Turner syndrome in my left arm and shoulder/scapula area. My question for you is that did you ever experience scapular winging on the effected side? I have this and It seems like my supraspinatus isn't recognizing my shoulders movement as well as my brachioradialis has no real sensation or inability to control of flex this muscle. Please tell me if any of those symptoms are synonymous with this condition as I've been dealing with it for 2 years and I want to work towards a full recovery.

Thanks a million for sharing this video!!!

5 yes later and still effected by PTS

Hey man, I know this is a long shot, but if you have an email I could contact you through, I just have a few questions. Glad you found some recovery.

I have had this strange debilitating disease. It struck me very suddenly at 7am in the morning in my right shoulder just as I was getting out of bed. The pain was excruciating and the ambulance was called as I thought I was having a heart attack. However, my heart was fine. The extreme pain continued for three weeks, it wasnt relieved by standard pain killers such as codeine and morphine but I was able to get occasional relief with fentanyl. However, eventually I reached my allowable doses and from there had to tough it out. I was able to get some pain relief posturally by holding my right arm above my head. This together with maximum rate paracetamol and sleeping tablets allowed me to get some sleep. At almost three weeks to the day the acute pain phase suddenly ended to be replaced by a dull ache in my shoulder. A subsequent MRI enabled the neurologist to definitively diagnose brachial neuritis. He showed me the scans and it was clear on the imagery that one of the brachial nerves to the right arm below the shoulder blade had withered away to almost nothing. He told me spontaneous (non injury related) cases of the disease were rare and that I was the first case he had seen. He explained although rare spontaneous cases frequently followed the same pattern and that I was a classic case. The victims are nearly always male, the disease strikes early in the morning in the predominant arm. Why, no one knows for sure but it is possibly related to previous trauma or could possibly be auto immune in nature. With subsidence of my extreme pain other effects took over. My right arm below the elbow became partially paralysed and my right hand although numb over the backside, was painfully hypersensitive on the palm side. It took about five months for these weird effects to subside. The grip strength of my right hand (I am right handed) had become about a third of my left. I undertook a course of physio that focused on exercising my hand and arm and deep heat treatment of my right shoulder. Things slowly improved. Eighteen months on, the grip strength of my right hand has more or less recovered. However, the back of my hand around the base of my little and adjacent finger remains numb as if injected with novacain. Although I can move my fingers and grasp, it is hard discern how much pressure I am exerting. For example if I am picking up a cup I have to think about it carefully and concentrate to avoid dropping it. The fingers of my right hand, particularly the right most fingers have become quite clumsy. The little finger sometimes juts out at an odd angle. It is hard to exert fine motor control. For example tying shoe laces, writing with a pen, using a knife and fork requires a lot of concentration. I am continuing physio but think for the moment improvement has plateaued. Fortunately I am retired so this disability doesnt affect me much day to day. My heart goes out to those impacted by the peculiar and enigmatic disease at younger ages. Its not just the unrelenting pain in the acute phase, in many careers the sudden loss of use of your right hand would be devastating.

2019 July 29, yep, 6 weeks of torture right scapula in the first 2 weeks lost most all the muscles in the right shoulder , took 7 weeks to get a PTS diagnosis seen 3 doctors in ND wife divorced me for reporting it to work comp lost my job this was caused by over stressing of right arm operating hydralic levers on the back of a silage truck inside the cab behind and to the right of the driver seat 9 hour day and cooked the c5 plexus. moved to the Black Hills of SD daughter got me on state insurance seen 2 doctors at Monument health in Rapid City SD 4 months of PT and very light work as a camp host for 2 summers recovered to 75 % for 3 years I worked part time driving truck but I now have nerve pain in the front of both shoulders and down to the elbows and any kind of work and it's pain level from 4 to 9 the majorly of a 24 hr period I'm almost 65 and it looks like I'm forced to retire

I also have since 2018

I'm going through the same thing it's just instead of my triceps it's nothing in my biceps and it was no pain at first but now it's horrible pain.....im about to start physical therapy and they plan on giving me a steroid injection but your video is giving hope for recovery

Well done bro. I going though it right now but I'm motivated as hell, have already recovered a lot of strenght but my scapula is still winging

Very good information. I failed to keep working out for almost 18 months. I did not know what was wrong with me nor did the doctors that I went to in China (where I lived at the time) so I thought “I’ll rest it for a while and everything will be fine”. Six months of resting then ran into the start of COVID in China, intense lockdowns and other problems for me as my business fell apart. 18 months after it began I still could not do a push up. 3 more years have passed since I started the slow process of getting back into the gym. I fully endorse your message of keeping going with the exercise, even if the weights are tiny. 4 1/2 years on from the onset of PTS (and 53 years old) I’m actually stronger than I was before the injury but it seems as if my right arm is always going to be just a little weaker than it would have been.

Thank you - I found this video inspirational and it gave me some hope. I too am very stubborn 😊 and know this can be a quality ❤ I was diagnosed on Friday by a neurologist after 5 months of uncertainty. My weakness is in some of my right hand muscles - giving me a clumsy hand and loss of some functional movements. I also need to wear a thumb support when I am working to give my thumb joint the stability that the muscles are no longer able to give. Your tips were very useful and I will follow them, but also I will be prioritising sleep to also help with the healing processes that you have described. So - from the bottom of my heart- thank you for sharing your personal journey. 😘🫂

sir can i ask what rehab exercises did you do to become PTS free. ive been dealing this since when i was 16 and im currently 20

Feels good to listen to you and your way of describing your experience with this condition. My Parsonage-Turner-Syndrome startet in 2015 while i was sleeping. A terrifying pain in the left shoulder and neck. It felt like somebody was trying to tear me apart. The pain lasted a week and was followed by the paralysis. Sadly it went on the phrenic nerve left sided and my life became a nightmare. Breathing became difficult...especiall exhaling. I coulnd lie flat on the ground, i couldnt endure being in water, i had the constant feeling of not getting enough oxygen - and from there, a 1,5-year long odyssey began, where i was diagnosed with a variety of different mental health issues (burnout etc.) until i found a doc who actually knew about the syndrome and diagnosed it. It took another year until i was able to sleep like a normal person again. The problem is, that the paralysis can come back once you went through it. Thats how i found your video - mine came back this night, and i know how my upcoming next two years will look like...

Thanks for the info, brother. My wife developed it while being diagnosed with West Nile virus. It's been a nightmare.

Happy for you Kevin! Keen to know how you're doing now strenght wise. Also can find myself in the mental struggle but that made me a stronger person (while there was nothing left of my strenght and my muscles in my left upper body more then halfed). 1.) Keep doing exercise. FULLY AGREE. Took 1 month rest after the pain came. Was able to sleep proper hours (6+ hours) after 3 weeks and that helped a lot in the recovery aswell. After the 1st month got back in the gym. Strenght in the left side of my body was less then 10% of what it was. Used a lot of banded work and excercise for the left side to try to "activate" the muscles. Also use microplates!!!!! Those smaller increments can really help you progress and make you happy (like Kevin mentions) because then you can see the true progress. Also like Kevin mentions, don't care about the 1kg. 0,5kg or even 0,1kg. It is something and that something is helping you and moving you towards your desired goal; gain control back over your body. Also use "lighter weigth" and aim for a higher rep range. It's all about get that blood pumping in the area that you want. 2.) Nutrition. Yeah, nothing to add in here. Make sure you're also hydrated. 3.) Stress. Same situation. Had a lot of stress and personally due to not setting boundaries for myself and constantly being busy. Would like to add 2 more but they go hand in hand. 4.) Massaging and strechting the muscle if you can bear it. These 2 things also improve the blood flow and can help you be more relaxed -> less stress. The better you eat, the better your body can absorb the nutrients and the sooner you'd be able to recover. If you're going trough this know that you got this. It's about being consistent. I believe in you.

This has been a really important series, thank you. I also suffered and found there was little 'real world' stories or resources available particularly as it's even less talked about in the UK. Pleased to say I am about 80% recovered also.

You can tell it emotionally brings back feelings for you as you speak of it even now. I am 11 months in and this condition is mentally draining. My Dad and sister both had this condition…..so mine is definitely the hereditary form. The most debilitating part is a winged scapula. I can deal with the weakness till it returns but the winged scapula causes so much shoulder instability and pain. My question is did you have a winged scapula and if so how long did it take to see some improvement? I assume it was a gradual improvement? Thanks ….been searching for positive inspirational posts about this syndrome. Unfortunately limited ones out there. On the bright side my Dad and sister both fully recovered.

Thanks for the post, for what it is worth here is my experience with brachial neuritis. I am old, not particularly fit (M76) and had sudden onset PST. It was classic spontaneous onset, just as I woke up, right side, acute pain in the shoulder blade region. The acute pain phase lasted 7 days. I was initially admitted to hospital with suspect heart attack, but heart and stroke indications were OK. Initial treatment was with codiene pain killer. That was next to useless at suppressing the pain and simply caused me to vomit. I found I could get enough relief to sleep with assistance of sleeping tablets, by lying flat on my back (no pillows) with my hands clasped over my head. On the seventh day I had a relapse into the most acute phase and was re-admitted to hospital for pain relief with fentanyl. This fully relieved the pain but left me a bit stupified. I was then prescribed OxyContin for pain relief (where I live you can't take fentanyl at home). It was partially effective and allowed life to return to a semblance of normality. I was able to stop the oxycontin by about day twelve. I still get occasional acute pain relapses but they only last an hour or so, and I have worked out postures that help relieve it (arch my back and push shoulders back as far as possible). So I am no longer taking pain relief. Now at week three and the pain has abated considerably. However, the two right most fingers of my right hand have now gone numb and are partially paralysed. This numbness extends up the right side of my hand and around my wrist, then up the right side of my lower arm to my elbow. The pads and tips of my fingers have become acutely sensitive, making it painful to grasp things. I have lost a lot of strength and dextrousness in my right hand. It is particularly hard to hold a knife or write with a pen. Despite best efforts these types of implements just flop around. I can still drive using my right thumb and forefinger to grasp the wheel but have had to give up my motorbike for the moment. I am consulting a neurologist who has confirmed PTS/brachial neuritis. I have had a nerve conduction test and MRI the results of which this far confirm the diagnosis, but given the rarity of this disease the results have also been sent off for further analysis. The neurologist says when the exact nature of the damage has been determined he will recommend a suitable course of physiotherapy. Meanwhile I am using arm movements and light hand dumbbell exercises to minimise muscle wastage. This is a very nasty life altering illness. I had never heard of it until it hit me like a bolt out of the blue. With a bit of luck, recovery happens but can take a while.

Thanks a lot for this video. I needed to hear this. My left tricep has lost about 60% of its strength.

Thanks, great you have recovered and thanks for sharing. I am 76 and am just recovering from the acute phase one. I had a classic presentation, male, right arm, intense pain in right shoulder and arm just as I was waking up in the morning. My right elbow became painful and I lost feeling and function of the two right most fingers of my right hand. Wiping my bum and doing up shoe laces became next to impossible. For me this continuous intense pain phase lasted for four days. The doctors tried various pain medication, the only one that worked somewhat was codiene but it left me very nauseous. In the end I chose the pain. On the fourth day the pain reverted to waves, where for an hour or two I was pain free. I have been using these pain free periods to try and exercise my arm. Given my age I was initially treated for heart attack but it quickly became clear my heart was OK. When my PTS diagnosis was confirmed my GP gave me a hug. He said that was because it was about the best thing he could do for me, I would just have to ride it out and do what I could to limit long term damage. In terms of limiting the pain, I have found posture helps, flat on back on the floor with hands clasped over my head. Heat therapy using wheat bags has helped a lot especially now the pain is in waves. I found these applied to the painful parts of shoulder and arm help to extend the pain free period. Given my acute phase only lasted four days I am hopeful for a fairly quick recovery. My heart goes out to those suffering this agonising disease, in particular those stuck in-phase one for protracted periods.

gostaria de sabert mais sobre isso pois acredito que tambem tenha rssa sindrome

Hello. Do you think grippers will help on strengthening the brachioradialis? I'm really weak on that side unfortunately.

Hi. Did you have muscle atrophy when it first happened to you? And did the muscles grow back?

Thanks for the motivation! I've had mine for about 11-12 months now at 19yrs old after taking the COVID-19 vaccine last year. Weird thing is, I got injected on my left side but my right side was the one that got affected.. I've been losing strength and muscle on my Forearm for the past few months, my traps and chest are somewhat mostly flat. Right shoulder is relatively thinner compared to my left side too. Never really been that active in sports or had a healthy diet (working on the diet part now). How should I work on developing strength? Should I still workout even if my muscles are sore and stiff? It takes me a week or two before the stiffness goes away. So I use a heat pack to warm it up just to cope with it. I also use a heat rub just so I can move it properly without feeling that constant stiffness. Hopefully one day I can regain at least 80%+ of my strength.

Thank you for making this🙏

Thanks for the update, Kevin! I had my PTS 3 years ago (Trapezius muscle vanished, the spinal accessory nerve was affected) and I agree with you in every single word you said. Thanks for sharing!

Pleased for you bro. Get out there and enjoy your life again!

Hey man! Thanks for sharing you story! You named some really heavy weights for your reference-exercises, so you‘re still a stromg guy! I‘m having PTS now for the second time. First time was in my right side, now on the left. Pain was for 6 weeks, in varying intensity. I‘m only now assessing the strength-loss, but it‘s bad. I fully share your opinion on the motivation and the comeback-strategy. Keep it up! You‘re a true warrior; get up everytime! Best regards from Germany!

Hi , how are you getting on now with parsonage turner syndrome? As iv had it now 14months . My strength has come back abit but still have muscle loss. Im still training as best as i can . Like to know how your getting on ???

Hope you are fully recovered. No-one can appreciate the agonising pain of this unless they have had it. The lack of sleep can be a problem if you cannot dose up enough pain killers and that can make you feel even worse. Feeling useless not being able to perform the smallest of tasks with your arm/hand or get dressed is really disabling. Makes you appreciate your health when you get it back, if you do get full recovery after a very long time. Needless to say I dont garden anymore or decorate or lift anything heavy.

Thanks for this video. I'm very happy to see you recovering. I'm just at the beginning of this journey, I hope it goes as well as it did for you

What a beautiful success story! Job well done. I hope you continue to feel better.

Thanks for your details and posts! Very, very similar story with me. My neurologists diagnosed PTS and suggested there was nothing I could do to hurt or help it. So, like you, bench presses and overhead presses went to zero (I had lifted all my life, I was 57 when this happened). My pain for the first 10 days was intense but I managed with over-the-counter pain meds. Three doctors failed to diagnose it. My physical therapist did though! And then my Neurologist with an EMG confirmed it. I learned early that bodyweight movements (pushups, pullups, inverted rows) were possible, but I was severely weakened. Every single day, I worked to strengthen my back muscles to compensate for the paralysis. Although I had a limited range of motion, I worked my shoulders too, but nothing straight overhead. For the first several months I received weekly dry needle therapy in my back because the muscles in my back hurt so much; I knew it was only because they were working overtime for the paralyzed muscles. After about 10-11 months my long thoracic nerve had regenerated…I knew this because I caught myself reaching very high with my effected arm. I could lift about 8 pounds overhead on the effected side now. The bodyweight training turned into Olympic lifting and then into CrossFit (I wish I had found CrossFit years ago). I am 3-years into my recovery and believe I am about 90% recovered. My serratus anterior still does not work 100% as I can feel this weakness by my other muscles working overtime (I get an achy feeling in my scapular region). If I don’t recover 100%, it’s okay. I can press over 120 pounds overhead and feel that is pretty good considering my age and partial paralysis. If I had listened to my doctor and therapists' suggestion to do nothing, I don't think I would have recovered…especially at my age. Anyone who gets this, fight it!

Hope all is still going well! Last beginning of august I started having a stiff neck which I get from time to time, Within days it morphed into something else entirely , the pain from my shoulder down to my hand was excruciating, indescribable pain. Since it started in my neck , I became obsessed with the thought that it was a herniated disc in my neck,...my primary care doc told me that was very unlikely,...long story short my level 10 pain lasted about 3 weeks and was most unbearable at night, so I was unable to sleep, ...also my inside index and thumb sensation changed... Once the pain went away, my chest flattened and looked like part of my tricep was missing,...most health care at the time was too damm hard to get appointments,...by the time I got a call back from a neurologist was bout 5 months later, by then most of my pushing power was beginning to return.. It's been about 8 months now, strength has been returning still have some numbness in index and thumb but thankfully no pain....my primary care doc believed it was parsonage turner syndrome,...all the symptoms are there Let's hope it doesnt come back...because the pain from this is enough to cause lifelong p.t.s.d and fear of it returning,..

Thank you for the hope. I’m still in the pain stage and very afraid of my future. I have a good physical therapist already and I intend to prove that I can overcome this. I wonder how many others there are who were diagnosed and told that it was most probably caused by having Covid and the flu? I’d also like to know if there are any out there who have a genetically predisposed case of PTS?

I was just diagnosed and sent home with gabapentin and opiods. They’re useless against the pain. My arm is numb and fingers already weak. My EMG is in two days. My left eye is drooping and my neck is getting tighter so I’m very afraid of what I’m still facing.

I was just diagnosed and sent home with gabapentin and opiods. They’re useless against the pain. My arm is numb and fingers already weak. My EMG is in two days. My left eye is drooping and my neck is getting tighter so I’m very afraid of what I’m still facing.

thank you for this update you are giving me motivation to continue and not be depressed. i wish i could go back to the gym but right now its next to impossible because like you said it feels like some muscles are paralyzed. my deltoid is atrophied i hope my strength and muscle mass will come back. do you recommend any medication that helped you with your recovery? ive seen more than 10 doctors and they are clueless on how to help me. im really in bad place mentally right now.

Sorry for bad english. I got this same back in July 2021. 2 weeks uber pain + headaches 24/7. I slept for 10-12 hours and still been tired. At night crazy chills from my scapula to my chest? After like 3 weeks my strenght gone to complete zero, Went from like 130 kg bench to empty bar 20 kg? I had trouble to raise a hand without pain till 6-8 weeks?. Mobility was like 90 years old senior. Shoulder-neck-scapula pain was insane. It began heal a bit after like 4 months? 1-2 month zero progress, 3-4 month a lil diff. Now i ended 8 month therapy and my strenght is about 70 % percent. I can bench like 105 kg? from 130 kg. My pullups/deadlift back to 100 %, so its kinda weird like mostly affected was "push" muscles. I have winged scapula now ( it was a bit worse around 3-5 month compare to 8 month timeframe) + my infaspaniatus is in crazy waste/artrophy. I feel zero pain now but my strenght is not there.. like in some "movent" my body wont respond correctly. I hit gym 4x week + physioteraphty 2x per week. Statistic shown it takes 1-3 years to heal it up ( just over 30 % percent in first year) and around 90 % in the third year. So im around 70 % healed after 8-9 month. First of all my pull power come back, the push is the slowest in my case.

Thank you. My story is similar. For me it began in the early summer of 2019 when I was 49. Nearly 3 months of pain which was, at times, very intense. Once the pain was gone there was no strength on my right side. I rested it and I had acupuncture and cupping (I was in China) but although the right arm was fine in day to day use there was no strength there. The doctors had no idea what it was but did tell me that, as a man of 50, I should just give up on going to the gym. I rested it. 6 months rest brought no improvement. COVID came to China and suddenly I was losing nearly $10,000 a day in my business and I don’t think I slept more than 3 hours a night for 5 months. By the end of 2020 I could barely do a single push-up. As lockdown lifted in early 2021 (now in London) one of my daughters began to spend time in the gym and of course I wanted to go with her. Still no strength on the right side. I put 60kg on the bar for a bench press. This has always been my second warm up after the empty bar but my arm gave way and the weight came down on me. It was quite humiliating. I really thought that area of my life was finished. My daughter wanted to keep going to the gym so I went to keep an eye on her. I saw a young man with a prosthetic arm working out and I realised how pathetic I would be if I gave up. So I went right back to the beginning, lifting tiny weights that i hadn’t lifted since I was a teenager in the 1980s. It was a slow and frustrating process and things were hugely imbalanced between the left and right side but after 4 months I had just the feeling of strength again for a few moments, like hearing a fragment of a much loved song in the distance and that was enough to keep me going. By November I was able to enter a local bench press contest and lift 152.5kg and by February 2022 I did another competition in which I lifted 165kg. The right arm is still weaker especially in the tricep but I’d say that I’ve recovered 95%. I’m now 52 and I feeling positive about getting back to a 175kg or 180kg bench before declining testosterone levels take their toll. Things really did seem hopeless to me 14 months ago but there is hope.

Good content 👍

Hey bro, your story is almost exactly the same as mine. For me it started end of 2019. I was in pain for a long time. I actually still waiting for it to be diagnosed but I'm quite sure that this is what I have. Me strength is slowly coming back although my muscle wastage is still quite bad especially on my tricep which is almost gone. Have you been able to see the bulk on tricep and chest yet or is it still flat? Thanks for the video 🙌👊

Thanks for sharing your story. It’s been very helpful. I similarly went from doing 90lb floor presses to zero pushups within a two week period. No range of motion on pushups. Started in November and pain has lessened, but still there at times and no weight bearing range of motion has returned. For me, it’s bilateral. I’ve been tested for Rheumatoid Arthritis, Lyme, and had an MRI. I do have some rotator cuff issues on one side, but my good side is just as bad-weak and painful. I’ll look into PTS and ask for an EMG. Again, thanks for sharing as I found many similarities.

I had all the symptoms of PTS as you described. Started October 2020. By summer 2021 I had recovered arm strength maybe 80 to 90%. I was never diagnosed with PTS but after a CT scan April 2021 I was diagnosed with a C6/C7 herniated disc. But as most of my symptoms were recovered by summer, I was advised surgery was not necessary. Still get occasional muscle twitches in my tricep but strength compared to good arm is about 90 to 95% (after 18 months).

Hi kevin , great video. I have parsonage turner syndrome, iv just been diagnosed of it last wk after a electromyogram scan. Iv had it since august . My muscle wastage on my right arm is pretty bad, has your muscle mass come back as well as your strength , thank u

any more updates?? did you find a way to speed up the recovery because i am so much pain. we in this together indeed. an idiot chiropractor fucked up my neck and now i have this. do u take any drugs and medications? i hope you're better now

Hello kevin i hope you're in great health. is there any updates right now in 2022 did u fully recover?? i was diagnosed with PTS recently and honestly i dont know what to do and every doctor just tells me to rest but i cant really do that my life is in shambles. do you have any more tips and treatments to do?? thank you in advance