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.
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.
@@kevin_mahjoubiso I had it in both shoulders and had nerve decompression surgeries in both sides. I'm pretty much fully recovered now but it was a long journey. I have a question though, do you think you got it working out? I did and I think there is a link to rigorous exercise. I'm in the military, but as there is no known cause, I wasn't successful with a claim as they didn't believe they were at fault.
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.
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!
@@kevin_mahjoubi Thanks! Yeap, was almost perfect but because my scapula wasn’t working properly for one year I’m dealing with tendinitis pain. Good luck every one dealing with PTS!
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.
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. 😘🫂
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.
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 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.
Very severe atrophy.. nothing was left of my muscles. It came back along with the strength. I can still see a small difference between both sides, but i'm sure it'll even out over time
@Kevin Mahjoubi thank you for your response Kevin!! How many months did it take for your muscle mass to recover? Was it gradual improvement? Or all of a sudden it got bigger? And also, all of my symptoms are identical to yours. However, all doctors are saying that I have a herniated cervical disk. Did you get the from doctors?
@@crazyfuunypeep it came back gradually over time. Very slowly. It was a doctor that told me that it could be this rare condition called parsonage turner syndrome. I looked it up and i was 100% sure it was this, because all the symptoms including extreme weakness and muscle atrophy and acute pain phase were the same.
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.
Thanks a lot for this video. I needed to hear this. My left tricep has lost about 60% of its strength.
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.
Pleased for you bro. Get out there and enjoy your life again!
Thanks David!
@@kevin_mahjoubiso I had it in both shoulders and had nerve decompression surgeries in both sides. I'm pretty much fully recovered now but it was a long journey. I have a question though, do you think you got it working out? I did and I think there is a link to rigorous exercise. I'm in the military, but as there is no known cause, I wasn't successful with a claim as they didn't believe they were at fault.
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.
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
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!
Thank you, Gino! Is it getting any better? Wish you well and a complete recovery!
@@kevin_mahjoubi Thanks! Yeap, was almost perfect but because my scapula wasn’t working properly for one year I’m dealing with tendinitis pain. Good luck every one dealing with PTS!
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.
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. 😘🫂
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.
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.
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.
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.
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
I also have since 2018
Hello. Do you think grippers will help on strengthening the brachioradialis? I'm really weak on that side unfortunately.
gostaria de sabert mais sobre isso pois acredito que tambem tenha rssa sindrome
Hi. Did you have muscle atrophy when it first happened to you? And did the muscles grow back?
Very severe atrophy.. nothing was left of my muscles. It came back along with the strength. I can still see a small difference between both sides, but i'm sure it'll even out over time
@Kevin Mahjoubi thank you for your response Kevin!! How many months did it take for your muscle mass to recover? Was it gradual improvement? Or all of a sudden it got bigger?
And also, all of my symptoms are identical to yours. However, all doctors are saying that I have a herniated cervical disk. Did you get the from doctors?
@@crazyfuunypeep it came back gradually over time. Very slowly. It was a doctor that told me that it could be this rare condition called parsonage turner syndrome. I looked it up and i was 100% sure it was this, because all the symptoms including extreme weakness and muscle atrophy and acute pain phase were the same.
Thank you. I appreciate the response. Gives me hope