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

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!

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.

@chriso12345 Welcome to the group... you're description of hand pain is my exact experience. I started having issues the beginning of April 2018. About 3 months in, I went though the horrible hyper sensitivity you describe. I found that ICE was very helpful - but I guess I didn't have sensitivity to it like you do! I would caution you about swelling... if you have swelling that starts to inhibit your ability to move the index finger (or others) through their full range of motion - i.e. can you make a tight fist? I would go see a hand doctor right away. I lost my motion in my hand and ended up going to a hand doctor. After steroid injection and several months of physical therapy I can finally fully close my fist (although there are still limitations... going back for a 2nd injection soon). Also... compression gloves were a LIFE SAVER during the hypersensitive phase. Some of the hand therapy I did was desensitivity focused. I'm still sensitive to metal - but have developed a tolerance. Don't mean to overwhelm you with info... but I also did 2 spinal injections... at first they thought my issues were neck related. The injections did help - as I was told a steroid injected anywhere will help inflammation anywhere in the body to some degree. I'm still on the gabapentin... tried to reduce my dose without success... will try every month or so to see if I can get off of it. Would hate to think about being on it long term... Keep us posted on your progress...