Parsonage turner syndrome *

I’m very happy for you that after two years you are beginning to show improvement. I was encouraged to read that. I am nearing the end of my 21st month and am not showing any improvement. I keep waiting, hoping, and praying for a positive change. I try to remain as active as I possibly can, but I’m limited by my pain and the effects of my pain meds. I hope and pray that PTS will one day be a thing of the past for all of us!

I have had PTS since May 2017. I was able to return to work in August 2017, with pain meds. I began accupuncture in October 2017. As of January 2018, I have been off all pain meds and now only have mild pain in my upper arm. I highly recommend accupuncture treatment. After meds, pt, and nsaid cream with lidocaine, the most effective treatment was the accupuncture.

Hello @survivingpts! Thank you for posting. That's fabulous that you have had such a great outcome with successful acupuncture. Is there an integrative medicine facility that does your acupuncture or does your chiropractor do it? I too had treatment with acupuncture after a car accident and results were astounding.

@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...

@confused1955 I had the same hand issues you mention... "the pointing finger always pointing". I was so frustrated with the doctors because they never seem to care about my hand and the fact that I couldn't use it! My quality of life was miserable! I finally went to a hand doctor on my own... he diagnosed the "pointing finger" as tendonitis due to the extended period of swelling in my hand. Steroid injection and a couple of months of hand therapy and I was able to finally make a tight fist again. Oddly... my finger still feels "puffy" and cannot make a tight fist on its own. If I work it and push is closed with my other hand I can get it there... then I exercise it through the full range of motion... it's painful... I do it 2-3 times a day and yet still 5 minutes afterward and I can't make a fist... I'm going back to hand doctor in a couple of weeks. I suspect there will be a 2nd steroid injection. He also says there is a tendon "release" procedure that can be performed that may help range of motion. I take 1500-1800mg of gaba a day... I've tried to wean back but without success. Desparately do NOT want to be on this drug long term... afraid of dosage creep... You mention you think your issue is neck related... I went for spinal injections when this first all started... the doctor who did the injections completely poo-poo'd the PTS diagnosis... said it was all my neck... so you may be right!! Will say a prayer for you... hope you find relief. JJ

@adriennes I just had to 2nd your comment here... I'm still miserable... but compared to where I was 4-5 months ago I'm SO much better! I hope I can say the same again 6 months from now! Getting motion back in the hand is huge... and that frustration of not totally understanding WHERE the pain comes from... feeling like your crazy and it's all in your head! Poor family members do their best to understand but coming here and talking to kindred spirits is great therapy!

@christo12345 Same for me... turned the compression gloves inside out... do not understand why they aren't made that way in the first place!! I was wearing my glove in the grocery store this summer... some snot hole teenage girls made fun of me! "Nice glove...". I really wanted to punch them in the face... at the time it made me really sad... I've got a little more perspective now... but STILL wish I could make them understand the hurt they caused!! Also found that wearing the glove opened the door for people to ask me what was wrong with me! Why was I holding my arm strangely and couldn't use it at all. Couldn't push the cart, couldn't lift the heavy items etc. Once you wear the glove they feel open to asking questions... which was fine with me... the problem was I didn't have anything really to tell them. I'd just say "I've got a pinched nerve". That was enough. When I was in hand therapy, had the same issue, people had all these cool injuries... "ran my hand through the power saw", "smashed my hand in a door" type of injuries... then they would ask me what my issue was... I've got nothing to tell them! Nothing to point to as a cause... just woke up in horrible pain...

You’re making me laugh because I can really identify with you! Finally realized it’s better to walk along side the grocery cart and pull with good hand as opposed to listing to the right! Definitely a learning “curve” with this condition. ; )

@chriso12345 Yes... on the grocery cart issue... the first time I went and couldn't use my bad hand I just "powered" through by using my good hand... well guess what... that caused me trouble with my good hand! I used my good hand so much in new ways that I started to get trigger thumb! Then had to wear a brace on that hand at night too... did that for a few weeks and the thumb settled down and I've been more careful. One thing about this condition... it forces you to 'let go' and let OTHERS do things for you! My family has had to step up and do some of the things that I've always done... it can be hard to let go!!

@confused1955 I wanted to mention here about hand therapy... talking with @patrick17 he reminded me about "buddy loops". These are simple velcro loops that they use around the index finger and tie that finger to your middle finger. You wear them all the time for awhile and that way whenever you bend your middle finger your index finger gets flexed (even a little bit) too. Just wanted to add this here for anyone else suffering from the 'stiff' index finger symptom. Make sure if you start hand therapy to ask about buddy loops if they don't offer them to you!! I did what you mentioned about the rice... but I got some small beans. I think the rice is a better idea! Alot of desensitivity activities during the therapy - alot of it is learning to live with the 1/2 numb hand and learning the difference between discomfort (it feels weird) and real pain (it hurts like hell).