Parsonage turner syndrome *

Posted by adriennes @adriennes, Sep 9, 2017

I was diagnosed with parsonage turner last November after 2 months of agony, while I am able to function now, I’m still experiencing severe weakness, numbness, pain, this is unusual im told, but having it as a woman is unusual also. Does anyone have any experience with this?

@nychole3080 Here's the page I'm hoping will be helpful for you!!

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Hello, first off let me let you know I have experienced this twice. Once in my left arm when I was 18 (1985) and then again when I was 45 (2013) in the right arm. The best thing I can recommend is pain management! When the nerves are under attack the only thing is pain meds. I hate to say it that way but that is the only thing that can help. Second, and just as important, range of motion exercises. Waiting until it runs it’s course is too late! Even though the muscles atrophy will take its toll, keep moving EVERY finger, wrist, elbow, and shoulder to their full range of motion. If you don’t, you will spend months and months trying to stretch muscles and tendons, and the older you are, the tougher it gets. Once it runs it course the nerves will need to regenerate and then muscle building can begin, and with the range of motion kept in tact your recovery will be tremendously quicker.

My son (18) is experiencing symptoms right now that I fear could be PTS, I pray that it is not. But I hope this helps and YOU CAN DO IT!

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@scout138

Hello, first off let me let you know I have experienced this twice. Once in my left arm when I was 18 (1985) and then again when I was 45 (2013) in the right arm. The best thing I can recommend is pain management! When the nerves are under attack the only thing is pain meds. I hate to say it that way but that is the only thing that can help. Second, and just as important, range of motion exercises. Waiting until it runs it’s course is too late! Even though the muscles atrophy will take its toll, keep moving EVERY finger, wrist, elbow, and shoulder to their full range of motion. If you don’t, you will spend months and months trying to stretch muscles and tendons, and the older you are, the tougher it gets. Once it runs it course the nerves will need to regenerate and then muscle building can begin, and with the range of motion kept in tact your recovery will be tremendously quicker.

My son (18) is experiencing symptoms right now that I fear could be PTS, I pray that it is not. But I hope this helps and YOU CAN DO IT!

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HI, @scout138, and welcome to Mayo Clinic Connect. Thanks for the tips you've shared with managing Parsonage Turner Syndrome with the pain meds and also the range of motion exercises.

I'd like to introduce you to others in this thread who may be interested in interacting with you about what you are doing to manage pain in the whole arm region. Please meet @shazzah73 @adriennes @patrick17 @confused1955 and others. Though experiencing numbness rather than pain, I'd also like you to meet @tmachian.

Do you have a specific regimen you do regularly for the range of motion exercises, @scout138?

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@scout138

Hello, first off let me let you know I have experienced this twice. Once in my left arm when I was 18 (1985) and then again when I was 45 (2013) in the right arm. The best thing I can recommend is pain management! When the nerves are under attack the only thing is pain meds. I hate to say it that way but that is the only thing that can help. Second, and just as important, range of motion exercises. Waiting until it runs it’s course is too late! Even though the muscles atrophy will take its toll, keep moving EVERY finger, wrist, elbow, and shoulder to their full range of motion. If you don’t, you will spend months and months trying to stretch muscles and tendons, and the older you are, the tougher it gets. Once it runs it course the nerves will need to regenerate and then muscle building can begin, and with the range of motion kept in tact your recovery will be tremendously quicker.

My son (18) is experiencing symptoms right now that I fear could be PTS, I pray that it is not. But I hope this helps and YOU CAN DO IT!

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@scout138 I too have had multiple bouts with PTS – first time at about (age 20). I had a couple of rounds in my early 20's. Both of those affected by scapulas and caused winging of the scapula. It took years to recover and even then the movement in my shoulder and back is not "normal" but I get everything done I need to do! This latest round (age 57) has affected my arm, elbow and hand. I could NOT agree MORE with you about RANGE OF MOTION! I completely lost the usage of my right hand and have had to work very hard to get it back. Still have alot of pain and discomfort but so much better than last summer. Would highly recommend to all that if you have hand usage problems (index finger became rigid and unbendable) that you go to a HAND specialist! None of the multiple neurologists I went to seemed to care about my hand issues and THAT was the only thing I cared about! I went to the hand specialist on my own without a referral because I knew he could help me… and so far he's the only one who has helped!!

Liked by Lisa Lucier

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@petemidd

January 18th – something changed

I woke at 3 am with intense pain in my shoulders radiating down both arms

An ambulance took me into hospital and I was given diazepam to release my muscles.

I returned 2 days later as my voice had gone hoarse, the front right of my neck, numb to the touch and the pain was unbearable in my arms and shoulders in the evening. The pain woke me up at 2 am nightly and I had to bathe to ease the pain

2 weeks on they prescribed gabapentin and the pain is under control

I lost motor functionality in my left arm and now have a winged scapular on my right side.

I am struggling to make my doctors recognise the condition because it doesn’t fit typical symptoms.

I am wondering what steps I should take next because as a fit (well I was) man I am struggling.

To give you an idea of loss of strength on January 13th I could do 3 sets of 8 unassisted dips.

Today I cannot do 1

Very tough 🙁 any help would be greatly appreciated.

BTW I AM UK based so any advice for help in the north of England would be greatly appreciated.

Thanks
Pete

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Hello Pete my name is Beryl and I to am English……horrible experience and unbelievable pain ……I suffer from a thing called Polymyalgia Rheumatica…your experience sounds similar to mine only I had it all over the body ……it was bad …..didn't get recognized until I went to a good Rheumatolgist in Portland Oregon …..I now live in Oregon ……I know you will get some good feedback and information from John he is the person that helps us all ….he also suffers the disease and has experience that he shares…..you are not on your own but I know it feels like that …..good luck ……Beryl

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@petemidd

January 18th – something changed

I woke at 3 am with intense pain in my shoulders radiating down both arms

An ambulance took me into hospital and I was given diazepam to release my muscles.

I returned 2 days later as my voice had gone hoarse, the front right of my neck, numb to the touch and the pain was unbearable in my arms and shoulders in the evening. The pain woke me up at 2 am nightly and I had to bathe to ease the pain

2 weeks on they prescribed gabapentin and the pain is under control

I lost motor functionality in my left arm and now have a winged scapular on my right side.

I am struggling to make my doctors recognise the condition because it doesn’t fit typical symptoms.

I am wondering what steps I should take next because as a fit (well I was) man I am struggling.

To give you an idea of loss of strength on January 13th I could do 3 sets of 8 unassisted dips.

Today I cannot do 1

Very tough 🙁 any help would be greatly appreciated.

BTW I AM UK based so any advice for help in the north of England would be greatly appreciated.

Thanks
Pete

Jump to this post

Hello @petemidd, I would like to add my welcome to Mayo Clinic Connect along with @beryl. There is another active discussion on Parsonage Turner Syndrome where your post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion so you can meet other members with similar health conditions and can learn what helps them.

Groups > Brain & Nervous System > Parsonage turner syndrome *
https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/

Have your doctors offered any treatment plan or suggestions to help with the new symptoms you are experiencing?

REPLY

January 18th – something changed

I woke at 3 am with intense pain in my shoulders radiating down both arms

An ambulance took me into hospital and I was given diazepam to release my muscles.

I returned 2 days later as my voice had gone hoarse, the front right of my neck, numb to the touch and the pain was unbearable in my arms and shoulders in the evening. The pain woke me up at 2 am nightly and I had to bathe to ease the pain

2 weeks on they prescribed gabapentin and the pain is under control

I lost motor functionality in my left arm and now have a winged scapular on my right side.

I am struggling to make my doctors recognise the condition because it doesn’t fit typical symptoms.

I am wondering what steps I should take next because as a fit (well I was) man I am struggling.

To give you an idea of loss of strength on January 13th I could do 3 sets of 8 unassisted dips.

Today I cannot do 1

Very tough 🙁 any help would be greatly appreciated.

BTW I AM UK based so any advice for help in the north of England would be greatly appreciated.

Thanks
Pete

REPLY
@petemidd

January 18th – something changed

I woke at 3 am with intense pain in my shoulders radiating down both arms

An ambulance took me into hospital and I was given diazepam to release my muscles.

I returned 2 days later as my voice had gone hoarse, the front right of my neck, numb to the touch and the pain was unbearable in my arms and shoulders in the evening. The pain woke me up at 2 am nightly and I had to bathe to ease the pain

2 weeks on they prescribed gabapentin and the pain is under control

I lost motor functionality in my left arm and now have a winged scapular on my right side.

I am struggling to make my doctors recognise the condition because it doesn’t fit typical symptoms.

I am wondering what steps I should take next because as a fit (well I was) man I am struggling.

To give you an idea of loss of strength on January 13th I could do 3 sets of 8 unassisted dips.

Today I cannot do 1

Very tough 🙁 any help would be greatly appreciated.

BTW I AM UK based so any advice for help in the north of England would be greatly appreciated.

Thanks
Pete

Jump to this post

Hi @petemidd as requested by @johnbishop I have merged your pos to this existing thread on Parsonage Turner Syndrome.

I alsow anted to tag fellow members @shazzah73 @adriennes @patrick17 and @confused1955 as they could provide additional support to you like @beryl did.

REPLY

First and foremost, thank you to the Mayo Clinic for providing this service. I didn't think to look up support groups when I was first diagnosed with PTS and now I feel comforted knowing there's so many people out there who know just how I feel.

Here's my story…. I was 33 years old in October 2017 when my symptoms started, which were only present in my left arm. It took three months of unbearable pain and a nerve test before my doctor realized what was going on. One of my symptoms was a numbing feeling in my left index finger, which to this day, still has that numb feeling; I never regained that "normal" feeling I have in my other fingers. Unfortunately, the doctor was unable to figure out what triggered PTS, however I have a family history of Lupus and speculate that may be the reason. I have been tested for Lupus, but the test has always come back negative.

After a month and half of physical therapy combined with 3 daily doses of Gabapentin, the pain gradually went away in February/March 2018. I thought I was cured of this terrible condition and it would never surface again. Then this past weekend happened. On Saturday, my left tricep would not stop spasming all day, just like it did when I had the first onset of PTS, however there was no pain. I thought it was rather strange, but thought nothing of it. Then on Sunday, I was at work, sitting at my desk when all of a sudden I felt that all familiar pain we all know so well, shoot through my arm and into my elbow. Then came that wonderful burning feeling returning to my tricep (whatever is left of it, since the muscle really wasted away the first time around). I left work, came home and took a nap, woke up 3 hours later and the pain was gone. Today, the symptoms have returned, but the pain is not as intense as yesterday morning.

The most I will take for pain is ibuprofen, I choose not to medicate with opiates despite my doctor's suggestion. The question I have for all of you is, do you instinctively take Gabapentin when having an episode. I have a bunch of it left over, it hasn't expired yet. I really want to avoid having to go to my primary doctor in order to get a referral to see a specialist again so I can treat my latest symptoms. Any information and advice you can provide is greatly appreciated.

Thanks! and to those in pain right now, I hope y'all feel better!

REPLY
@scout138

Hello, first off let me let you know I have experienced this twice. Once in my left arm when I was 18 (1985) and then again when I was 45 (2013) in the right arm. The best thing I can recommend is pain management! When the nerves are under attack the only thing is pain meds. I hate to say it that way but that is the only thing that can help. Second, and just as important, range of motion exercises. Waiting until it runs it’s course is too late! Even though the muscles atrophy will take its toll, keep moving EVERY finger, wrist, elbow, and shoulder to their full range of motion. If you don’t, you will spend months and months trying to stretch muscles and tendons, and the older you are, the tougher it gets. Once it runs it course the nerves will need to regenerate and then muscle building can begin, and with the range of motion kept in tact your recovery will be tremendously quicker.

My son (18) is experiencing symptoms right now that I fear could be PTS, I pray that it is not. But I hope this helps and YOU CAN DO IT!

Jump to this post

That was very good advice you gave for anyone who has PTS. I will reach the two year mark this week. Unfortunately, there has been very little let up in pain or use of my hand and arm. I have gone for occupational therapy several times, but it really hasn’t helped much. I also do range of motion exercises. One way to remember doing them which has worked for me is that I do them each time I take a pain pill which is 4 times a day. Even at 3 in the morning!
I also agree with having a great pain management doctor. They have helped much more than my neurologist. My experience was after performing an EMG test and reaching a diagnosis of PTS, follow up visits to my neurologist only resulted in offering different pain meds none of which worked for me. Pain management doctors offered other alternatives.

I hope and pray that your son does not have PTS. Thanks again for your post. It should be required reading for everyone who has PTS!

REPLY
@josebaltierraii

First and foremost, thank you to the Mayo Clinic for providing this service. I didn't think to look up support groups when I was first diagnosed with PTS and now I feel comforted knowing there's so many people out there who know just how I feel.

Here's my story…. I was 33 years old in October 2017 when my symptoms started, which were only present in my left arm. It took three months of unbearable pain and a nerve test before my doctor realized what was going on. One of my symptoms was a numbing feeling in my left index finger, which to this day, still has that numb feeling; I never regained that "normal" feeling I have in my other fingers. Unfortunately, the doctor was unable to figure out what triggered PTS, however I have a family history of Lupus and speculate that may be the reason. I have been tested for Lupus, but the test has always come back negative.

After a month and half of physical therapy combined with 3 daily doses of Gabapentin, the pain gradually went away in February/March 2018. I thought I was cured of this terrible condition and it would never surface again. Then this past weekend happened. On Saturday, my left tricep would not stop spasming all day, just like it did when I had the first onset of PTS, however there was no pain. I thought it was rather strange, but thought nothing of it. Then on Sunday, I was at work, sitting at my desk when all of a sudden I felt that all familiar pain we all know so well, shoot through my arm and into my elbow. Then came that wonderful burning feeling returning to my tricep (whatever is left of it, since the muscle really wasted away the first time around). I left work, came home and took a nap, woke up 3 hours later and the pain was gone. Today, the symptoms have returned, but the pain is not as intense as yesterday morning.

The most I will take for pain is ibuprofen, I choose not to medicate with opiates despite my doctor's suggestion. The question I have for all of you is, do you instinctively take Gabapentin when having an episode. I have a bunch of it left over, it hasn't expired yet. I really want to avoid having to go to my primary doctor in order to get a referral to see a specialist again so I can treat my latest symptoms. Any information and advice you can provide is greatly appreciated.

Thanks! and to those in pain right now, I hope y'all feel better!

Jump to this post

Hi, @josebaltierraii – welcome to Mayo Clinic Connect. A key intent with Mayo Clinic Connect is just as you said: to help members feel comforted knowing there are so many people out there who know just how you feel. Patients also "know things" from their journeys and are able to help out fellow patients with the same or similar condition a lot.

That is very unfortunate that the pain and spasming came back in a shooting, burning manner.

I think that some of the other members with PTS here in this discussion will have some thoughts on how they use gabapentin and whether they instinctively take it when having an episode. Please meet @tmachian @patrick17 @jjspokane61 @scout138 @confused1955.

Sounds like you are not wanting to go through the process of getting a referral and all that involves to get your latest symptoms treated. Have you thought about perhaps messaging your doctor through a secure portal or calling his or her office to speak to a nurse, @josebaltierraii, for what he or she would suggest for gabapentin use when you have an episode of your PTS?

@petemidd – how is your left arm doing? I believe that you were looking for input on how you could help your doctors recognise your condition because it doesn’t fit typical symptoms, and also get your strength back. I'm hoping some of the same members I tagged will have some insights for you. Just to confirm, @petemidd, do you have a confirmed diagnosis of Parsonage Turner, or are you strongly suspecting that you have it?

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@patrick17

That was very good advice you gave for anyone who has PTS. I will reach the two year mark this week. Unfortunately, there has been very little let up in pain or use of my hand and arm. I have gone for occupational therapy several times, but it really hasn’t helped much. I also do range of motion exercises. One way to remember doing them which has worked for me is that I do them each time I take a pain pill which is 4 times a day. Even at 3 in the morning!
I also agree with having a great pain management doctor. They have helped much more than my neurologist. My experience was after performing an EMG test and reaching a diagnosis of PTS, follow up visits to my neurologist only resulted in offering different pain meds none of which worked for me. Pain management doctors offered other alternatives.

I hope and pray that your son does not have PTS. Thanks again for your post. It should be required reading for everyone who has PTS!

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Have you had your thymus imaged. Strange as that sounds when the doctor discovered that I had a thymoma and it was removed my
Pts resolved. Thymoma is often related to autoimmune issues, though there are no studies with respect to pts.

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@andylevine

Have you had your thymus imaged. Strange as that sounds when the doctor discovered that I had a thymoma and it was removed my
Pts resolved. Thymoma is often related to autoimmune issues, though there are no studies with respect to pts.

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Those of you on narcotics for pain how do you keep your bowels moving. I had to stop mine and am taking several types of laxatives but I've been 34 days without a bowel movement. If this new set of laxatives don't work by the end of March I have To go into long term care. My medical team have tried to keep me home but without my bowel working and my pain under control the team gave me 60 days I have 40 days left. Anyone out there find a laxative that actually works.

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Hi @confused1955, I'm not taking any narcotics but from time to time I have severe constipation and use Metamucil which contains psyllium fibre. I mix a a couple of teaspoons in an 8 oz glass of water and drink it in the morning. It usually helps me go within the day. More info about it here:
https://chealth.canoe.com/drug/getdrug/metamucil

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@johnbishop

Hi @confused1955, I'm not taking any narcotics but from time to time I have severe constipation and use Metamucil which contains psyllium fibre. I mix a a couple of teaspoons in an 8 oz glass of water and drink it in the morning. It usually helps me go within the day. More info about it here:
https://chealth.canoe.com/drug/getdrug/metamucil

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Have tried every over the counter med everyday for 6 years. Went off all stated lactalose a month ago still nothing. 2 weeks ago I started constella nothing. All I have is a leaky discharge with gas about once a week. Dr got involved 2 weeks ago but in the last two weeks I can hardly breath because stomach and chest is so distended. Will Be seeing Dr. Thursday afraid he and my medical team aren't going to wait until the end of March before they demand long term care.

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