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Brain & Nervous System | Last Active: Aug 4 7:56am | Replies (239)
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Hello,
I have recently been diagnosed with Parsonage Turner Syndrome. I have lost a lot of muscle in my dominant right hand and regularly have numbness and shooting pain from my shoulder down to my fingers. Typing is becoming very difficult for me. I have good days and bad days, but the bad days can get pretty intense. I'm scared that I will come to a point where I can't do my job because I will not be able to use my right hand.
Does anyone have any suggestions on how to manage the pain? I've read an old thread where people have used ice and heat, exercise and a tens unit. What has been most effective for you?
Thanks,
Missy
Replies to "Hello, I have recently been diagnosed with Parsonage Turner Syndrome. I have lost a lot of..."
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Hello Missy... so sorry to hear about your pain. My PTS started 2+ years ago - I can tell you it WILL get better. My BEST advice to you is to find a doctor to work with who can give you steroid shots. Over the course of my case I had 2 spinal injections in the neck and 2 injections in my index finger. After each steroid injection (about 2 weeks after the injection) I would see an improvement in my symptoms. I would say the SHOOTING pains lasted about 6 months and after that the biggest pain source was my hand. Because of the pain and swelling I completely stopped (or couldn't) bend my index finger. I finally went and saw a hand specialist and he gave me the hand injection and sent me to physical therapy. It was tough therapy - very painful as they slowly forced my finger into moving again. Probably 2 months of hand therapy and I was finally able to fully bend the finger again. I took alot of gabapentin along the way - I do think it was helpful but getting off of it was a long process. It was about a 6 month long weaning process to get off of it. Decreasing the dose by 100 mg per every 2 weeks or so until I could finally stop it all together. My hand is still numb and painful every day but I'm able to push through it. The strange overall weakness of the arm is really a freaky feeling. I've been off the gaba for 6 months and feeling better every day.
I think both ice and heat are helpful. At work I would always have an ice bag at my desk. (I had to stop using my right hand for the mouse - learned to use my left.) I used rice bags that can be microwaved - I still use a heating pad at night to calm it down before falling asleep.
Post again and give us an update about how you are doing. My heart goes out to you... I know how overwhelming it can be to feel like no one can understand what you are feeling - I always said there's no outward evidence of my pain so no one really understands. If you have a bleeding wound everyone can SEE why your in pain - but with nerve pain it's almost like its in your head and not real. But its VERY real!