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!
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.
I've also been dealing with PTS for about 8 months now! Didn't know what it was until around a month ago. At the onset of the pain I had an MRI & they told me that C6 & C7 in my neck were degenerative & that it was pinching my nerves. The pain was the worst pain of my entire LIFE for about 4 months straight, 24/7! Couldn't sleep or anything! They put me on all kinds of painkillers, anti-inflammatorys, muscle relaxers, etc, that didn't do ANYTHING at all! The pain traveled down my neck into my upper back, (all right side for me as well) into my trap, shoulder, shoulder blade area, down my tricep, into my forearm, & into my hand, & thumb, first finger, & middle finger. (I also was a big guy, worked out, & was in awesome shape) then all of a sudden I notice one day while looking in the mirror that my tricep looked considerably smaller than usual & so did the right side of my chest as well! After looking up all kinds of stuff online I found out about PTS & saw a video someone else had posted on RUclips saying that all the same exact stuff happened to him & it was PTS. So after looking up a bunch more information about it I can say with 100% confidence that it's definitely PTS! I'm about to make an appointment with a neurologist to see where to go from here. I just HAVE to do something because I can't take my right pec & tri just withering away to nothing & having no strength whatsoever in them! It's the most horrible, horrible feeling!!! Especially after I was a big, muscular, strong, fit, active guy for the last 25 years of my life! (I'm 45 now, but started working out when I was 20) Anyways, thank you for posting this video! I look forward to your progress and recovery! Keep your head up brother! 👍💪
I'm very bummed out to hear about your story and that you're facing the same damn issue that I am! I have the exact same symptoms that you've described so I am also 100% sure that you're dealing with PTS. I truly hope that you'll make a full recovery and that your strength and mass will come back. I too am a lifter and to see your hard work just melting away is painful to the mind. But brother, don't give up without a fight, nor will I. The neuro that i went to told me he could do nothing about it and that it is something that will fix itself.. In the hope of making a full 100% recovery. Next week i'll post a 2nd update about a doctors check up, my current recovery training routine and overall status. I hope you'll get something out of the vids. I wish you all the best, and don't let this PTS defeat you. Never give up without a fight
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...
That's terrible to hear. It is something we must fight against and be stubborn against. Don't let the paralysis own you. I know it's easier said than done but own it and conquer it. You went through it once and I know for a fact that you will beat it again. Good luck 🙏
I was doing pull-ups, I Started having shoulder pain in both shoulders, they told me it was a rotator cuff, but then I started having trouble breathing only when I slept on my back, I told my Doctor, he sent me to a pulmonary doctor, who then sent me to a neurologist, my diaphragm was paralyzed on both sides, I lost core strength, now I have to sleep with a Bi-pap machine they told me posable Parsonage Turner syndrome. What ever it is, it attract the phrenic nerve on both sides of the bronchiole plexus. The pain went away and one side of my diaphragm did seem to work again but I still have no core strength and have to use a machine to breath at knight.
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.
Thanks for the post bud! I too have a very similar story. Very early this year on January 10 2020 during a wrestling match in college my opponents entire body weight went on my right shoulder blade which led to me having a sharp stabbing pain on my right side . Everything on my right side from my shoulder blade, neck, pec, tricep and everything down my right arm started firing and shaking uncontrollably. My pain had lasted for about two weeks then after that it eventually went away. Once my pain went away I started benching again and my right side was completely unstable. Before my injury, I was putting up big numbers in the gym like 125kg for 12 reps on the bench press. So when I started benching again Just a few weeks after my injury I could only do 60kg just Barely Getting 1 rep. My ride side felt completely unstable while my left side was perfectly fine. Also my overhead press got a lot weaker and had hard time doing push-ups with proper form because I was completely lopsided. So my muscles from my scapula, pec, and tricep experienced the most atrophy and were heavily affected. Due to nearly 11 months of recovery, I’m blessed to say that most of my strength has come back to the point we’re I can do 100kg for about 12-13 reps on the bench press so there’s still plenty of strength that I still need to recover but staying positive and patience is key. I just haven’t got my injury diagnosed yet but based on all the research that I have done, I believe that it’s parsonage Turner syndrome because all of the symptoms that I have is leaning towards that. All I can say is that everything happens for a everything and mindset is key. Thank you for your post I hope you fully heal and I would love to stay updated on your progress. Positive infinity and keep your head up champ!💯
I’m 3.5 years since onset in the summer of 2017, muscle strength (left side is my effected side) has returned, but very difficult to build size. My pec and tricep twitch constantly.
I had an infection which I didn't deal with for a couple weeks then shortly after fixing that I suddenly had severe pain in my clavical, shoulder socket area and scapula. It became even worse, writhing in pain all night with scapula, arm and armpit pain so severe. The doc gave me mescle relaxer and I did some research because I also developed laryngitis that hasn't gone away. Well this is a rare side effect of PT syndrome. 2 months later and still extreme pain if I try to do the smallest task and pain lasts all night....even tho I am on gabapentin, aspirin, tylenol. Doc will not prescribe opioid or narcotics and still isn't convinced it's PT syndrome.
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
I also suffer from PTS, I had 2 inflammations and unfortunately now have permanent nerve damage. Maybe strange question, but I noticed that your right eyelid is slightly lower than your left, has this always been the case? Reason is that I now have issues with my left eye starting same time as the first inflamation and doctors always said it is pure coincidence.
@Brian Anderson 4 years... Damn are you very sure about it being pts? It's been 6 months for me and my strength is at about 60 percent of what it used to be at the moment
Did you have a sharp pain in your shoulder when lying supine with a sense of suffocation? I think I have this from the Covid vaccine. I’m a nurse. They gave me steroid injection with gabapentin. I’m a little frustrated. I don’t have weakness yet -still have pain. Thank you for sharing.
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.
The numbness and strange skin sensation came with the pain. That’s why I requested PT immediately. My hand wouldn’t respond at first. Now with constant work, I can touch all fingers to my thumb and flash a peace sign. ( I have to “ think it “ first) My EMG is tomorrow morning. I’m definitely still in the acute stage though more manageable with Toriodal and Gabapentin. Laying my arm on anything feels like I’m putting it on a block of ice.
Sorry, I didn’t answer well. I woke at 3 am March 25th with my left side, shoulder front and back, arm, especially underarm and elbow and wrist in the most excruciating nerve pain imaginable. ER doc treated me for “ thoracic sprain” I was back two days later when i started losing use of my hand and they sent me home with “ pinched cervical nerve. I saw my neuro the next day and after examination, his first question was-“ had I had Covid or a vaccine recently”?
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!
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.
Can't agree more! Hope you make a full recovery, Julia!
I've also been dealing with PTS for about 8 months now! Didn't know what it was until around a month ago. At the onset of the pain I had an MRI & they told me that C6 & C7 in my neck were degenerative & that it was pinching my nerves. The pain was the worst pain of my entire LIFE for about 4 months straight, 24/7! Couldn't sleep or anything! They put me on all kinds of painkillers, anti-inflammatorys, muscle relaxers, etc, that didn't do ANYTHING at all! The pain traveled down my neck into my upper back, (all right side for me as well) into my trap, shoulder, shoulder blade area, down my tricep, into my forearm, & into my hand, & thumb, first finger, & middle finger. (I also was a big guy, worked out, & was in awesome shape) then all of a sudden I notice one day while looking in the mirror that my tricep looked considerably smaller than usual & so did the right side of my chest as well! After looking up all kinds of stuff online I found out about PTS & saw a video someone else had posted on RUclips saying that all the same exact stuff happened to him & it was PTS. So after looking up a bunch more information about it I can say with 100% confidence that it's definitely PTS! I'm about to make an appointment with a neurologist to see where to go from here. I just HAVE to do something because I can't take my right pec & tri just withering away to nothing & having no strength whatsoever in them! It's the most horrible, horrible feeling!!! Especially after I was a big, muscular, strong, fit, active guy for the last 25 years of my life! (I'm 45 now, but started working out when I was 20) Anyways, thank you for posting this video! I look forward to your progress and recovery! Keep your head up brother! 👍💪
I'm very bummed out to hear about your story and that you're facing the same damn issue that I am! I have the exact same symptoms that you've described so I am also 100% sure that you're dealing with PTS. I truly hope that you'll make a full recovery and that your strength and mass will come back. I too am a lifter and to see your hard work just melting away is painful to the mind. But brother, don't give up without a fight, nor will I. The neuro that i went to told me he could do nothing about it and that it is something that will fix itself.. In the hope of making a full 100% recovery. Next week i'll post a 2nd update about a doctors check up, my current recovery training routine and overall status. I hope you'll get something out of the vids. I wish you all the best, and don't let this PTS defeat you. Never give up without a fight
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...
That's terrible to hear. It is something we must fight against and be stubborn against. Don't let the paralysis own you. I know it's easier said than done but own it and conquer it. You went through it once and I know for a fact that you will beat it again. Good luck 🙏
I was doing pull-ups, I Started having shoulder pain in both shoulders, they told me it was a rotator cuff, but then I started having trouble breathing only when I slept on my back, I told my Doctor, he sent me to a pulmonary doctor, who then sent me to a neurologist, my diaphragm was paralyzed on both sides, I lost core strength, now I have to sleep with a Bi-pap machine they told me posable Parsonage Turner syndrome. What ever it is, it attract the phrenic nerve on both sides of the bronchiole plexus. The pain went away and one side of my diaphragm did seem to work again but I still have no core strength and have to use a machine to breath at knight.
Exactly the same what happened to me. Phrenic nerve got paralized. Took years to recover (about 6) - and then came back again...
Thanks for the info, brother. My wife developed it while being diagnosed with West Nile virus. It's been a nightmare.
Good luck to her recovering!
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.
Thanks for the post bud! I too have a very similar story. Very early this year on January 10 2020 during a wrestling match in college my opponents entire body weight went on my right shoulder blade which led to me having a sharp stabbing pain on my right side . Everything on my right side from my shoulder blade, neck, pec, tricep and everything down my right arm started firing and shaking uncontrollably. My pain had lasted for about two weeks then after that it eventually went away. Once my pain went away I started benching again and my right side was completely unstable. Before my injury, I was putting up big numbers in the gym like 125kg for 12 reps on the bench press. So when I started benching again Just a few weeks after my injury I could only do 60kg just Barely Getting 1 rep. My ride side felt completely unstable while my left side was perfectly fine. Also my overhead press got a lot weaker and had hard time doing push-ups with proper form because I was completely lopsided. So my muscles from my scapula, pec, and tricep experienced the most atrophy and were heavily affected. Due to nearly 11 months of recovery, I’m blessed to say that most of my strength has come back to the point we’re I can do 100kg for about 12-13 reps on the bench press so there’s still plenty of strength that I still need to recover but staying positive and patience is key. I just haven’t got my injury diagnosed yet but based on all the research that I have done, I believe that it’s parsonage Turner syndrome because all of the symptoms that I have is leaning towards that. All I can say is that everything happens for a everything and mindset is key. Thank you for your post I hope you fully heal and I would love to stay updated on your progress. Positive infinity and keep your head up champ!💯
Get well soon. Don't give up. We'll get there eventually
Thank you. Sincerely.
I’m 3.5 years since onset in the summer of 2017, muscle strength (left side is my effected side) has returned, but very difficult to build size. My pec and tricep twitch constantly.
That's really weird. Any event that led to an attack? And you mean you have an assymetry in size as well, eventhough strength is back?
I had an infection which I didn't deal with for a couple weeks then shortly after fixing that I suddenly had severe pain in my clavical, shoulder socket area and scapula. It became even worse, writhing in pain all night with scapula, arm and armpit pain so severe. The doc gave me mescle relaxer and I did some research because I also developed laryngitis that hasn't gone away. Well this is a rare side effect of PT syndrome. 2 months later and still extreme pain if I try to do the smallest task and pain lasts all night....even tho I am on gabapentin, aspirin, tylenol. Doc will not prescribe opioid or narcotics and still isn't convinced it's PT syndrome.
Thanks for sharing your experience. I wish you a full and speedy recovery my friend. Good luck
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
How is ur recovery now?
@@sonalibhat5149 im still in pain and suffering not so good my body got better overtime but im still disabled and idk what to do
I also suffer from PTS, I had 2 inflammations and unfortunately now have permanent nerve damage. Maybe strange question, but I noticed that your right eyelid is slightly lower than your left, has this always been the case? Reason is that I now have issues with my left eye starting same time as the first inflamation and doctors always said it is pure coincidence.
5 yes later and still effected by PTS
Did you ever get a diagnosis?
Yes I did
@Brian Anderson 4 years... Damn are you very sure about it being pts? It's been 6 months for me and my strength is at about 60 percent of what it used to be at the moment
Did you have a sharp pain in your shoulder when lying supine with a sense of suffocation?
I think I have this from the Covid vaccine. I’m a nurse. They gave me steroid injection with gabapentin. I’m a little frustrated. I don’t have weakness yet -still have pain. Thank you for sharing.
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.
Did you experience a sheering neurological pain before the numbness started?
The numbness and strange skin sensation came with the pain. That’s why I requested PT immediately. My hand wouldn’t respond at first. Now with constant work, I can touch all fingers to my thumb and flash a peace sign. ( I have to “ think it “ first) My EMG is tomorrow morning. I’m definitely still in the acute stage though more manageable with Toriodal and Gabapentin. Laying my arm on anything feels like I’m putting it on a block of ice.
Sorry, I didn’t answer well. I woke at 3 am March 25th with my left side, shoulder front and back, arm, especially underarm and elbow and wrist in the most excruciating nerve pain imaginable. ER doc treated me for “ thoracic sprain” I was back two days later when i started losing use of my hand and they sent me home with “ pinched cervical nerve. I saw my neuro the next day and after examination, his first question was-“ had I had Covid or a vaccine recently”?