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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!
Replies to "Hello, first off let me let you know I have experienced this twice. Once in my..."
@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!!
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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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?