Parsonage turner syndrome *

Not sure this is the right place to post. I was just diagnosed with Parsonage Turner Syndrome. I guess the good news is that it’s only been about 5 weeks since this began. From reading other posts, I can’t imagine dealing with this for months and years without knowing. I’ve seen posts about using heat and cold, and cupping. If possible, can I get some additional information about this? What works to manage the pain? My hand is driving me crazy! It’s the median nerve that’s messed up from halfway between armpit and elbow down into hand. Most of my hand is numb (except for pinky and half of ring finger) but it’s also hypersensitive to cold. Touching metal is bad. Any suggestions on how to manage? Still trying to work but it’s tough. Thanks in advance for already posted. It’s been really helpful finding others who are dealing with this.

Jump to this post

Hello @chriso12345, welcome to Mayo Clinic Connect. There is another active discussion for Parsonage Turner Syndrome where you might get better visibility for your post and connect with other members who have discussed Parsonage Turner Syndrome. I'm tagging @lisalucier to see if she can move your post to the following discussion:

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

I don’t have any experience or knowledge of Parsonage Turner Syndrome but thought I would point you to a couple of websites that may be able to help until another Connect member joins the discussion.

The National Organizations for Rare Disorders talks about it here: https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/.
Mayo Clinic also offers some information here: http://www.mayoclinic.org/diseases-conditions/brachial-plexus-injury/symptoms-causes/dxc-20127374

@chriso12345 have you found anything that helps a little?

John

Jump to this post

@johnbishop the doctor prescribed Gabapentin which I didn’t want to take at first. Now, I am because I work full time and need something to be able to continue working.

Jump to this post

Hi, @chriso12345 - As you'd asked about suggestions for managing the pain with your Parsonage Turner Syndrome, I'd like to invite members like @jjspokane61 @mydolly @patrick17 @confused1955 @andylevine @yaseen786 to come back to this discussion and see if they'd have some input for you. Hoping they may also have some thoughts for you on therapies like using heat and cold, and cupping, plus the numbness in most of your hand and its hypersensitivity to cold and how that might be managed.

While awaiting their return, you may be interested in reading this NIH information on Parsonage Turner Syndrome, https://rarediseases.info.nih.gov/diseases/4228/parsonage-turner-syndrome.

You mentioned taking gabapentin and that it's helping you continue working. How is it working for managing your pain? Are you experiencing any side effects from the medication?

Jump to this post

Not sure this is the right place to post. I was just diagnosed with Parsonage Turner Syndrome. I guess the good news is that it’s only been about 5 weeks since this began. From reading other posts, I can’t imagine dealing with this for months and years without knowing. I’ve seen posts about using heat and cold, and cupping. If possible, can I get some additional information about this? What works to manage the pain? My hand is driving me crazy! It’s the median nerve that’s messed up from halfway between armpit and elbow down into hand. Most of my hand is numb (except for pinky and half of ring finger) but it’s also hypersensitive to cold. Touching metal is bad. Any suggestions on how to manage? Still trying to work but it’s tough. Thanks in advance for already posted. It’s been really helpful finding others who are dealing with this.

Jump to this post

Hi, @chriso12345 - As you'd asked about suggestions for managing the pain with your Parsonage Turner Syndrome, I'd like to invite members like @jjspokane61 @mydolly @patrick17 @confused1955 @andylevine @yaseen786 to come back to this discussion and see if they'd have some input for you. Hoping they may also have some thoughts for you on therapies like using heat and cold, and cupping, plus the numbness in most of your hand and its hypersensitivity to cold and how that might be managed.

While awaiting their return, you may be interested in reading this NIH information on Parsonage Turner Syndrome, https://rarediseases.info.nih.gov/diseases/4228/parsonage-turner-syndrome.

You mentioned taking gabapentin and that it's helping you continue working. How is it working for managing your pain? Are you experiencing any side effects from the medication?

Jump to this post

I’m sorry you have been diagnosed with PTS. My advice is to read as much as you can about it. The good news is that it does improve in time. It is different for each person. I’ve read that steroids can be effective if done early on. I’m sure your doctor is aware of this. The progression of mine was a lot different from yours. It was 11-12 weeks before the pain went to my right hand after first having had severe shoulder pain. It has been 20 months for me and my pain is still getting worse. Both my hands are affected along with my right forearm. I take opioids and Lyrica for pain. They help some but I still have a lot of pain. Compression gloves help me a lot. I use Isotoner gloves. They are easy to get on and off and have a good stretch to them. It’s important to get the right size. I just ordered a compression sleeve for my arm. I know this will help too. I use heating pads all the time. I purchased one that I can put my hand into and it feels very good. I’ve tried several types of creams. None worked on my pain. I’ve tried acupuncture and cupping and they didn’t help my pain. I’ve tried CBD oil and medical marijuana. They didn’t help either. One thing I have started doing is listening to meditation music on the internet. It can be very relaxing. As I said, PTS is different for everyone. Hopefully one of the treatments I’ve mentioned will help you. Good luck! Stay strong!

Jump to this post

Not sure this is the right place to post. I was just diagnosed with Parsonage Turner Syndrome. I guess the good news is that it’s only been about 5 weeks since this began. From reading other posts, I can’t imagine dealing with this for months and years without knowing. I’ve seen posts about using heat and cold, and cupping. If possible, can I get some additional information about this? What works to manage the pain? My hand is driving me crazy! It’s the median nerve that’s messed up from halfway between armpit and elbow down into hand. Most of my hand is numb (except for pinky and half of ring finger) but it’s also hypersensitive to cold. Touching metal is bad. Any suggestions on how to manage? Still trying to work but it’s tough. Thanks in advance for already posted. It’s been really helpful finding others who are dealing with this.

Jump to this post

I'm so sorry to hear this. I also have PTS bilateral so both hands and arms. I have been suffering for over 2 years. Gabapentin and opioids are the only thing that seems to help a bit. I've tried several types of Cannabis. Found no miracles yet. I'm going to try acupuncture next plus lots of prayer.

Jump to this post