United Brachial Plexus Network, Inc.

I just came back from my 8th doctor & this is what he told me I have. All the symptoms see similar to everyone elses. I did go through 2 weeks of awful pain where I couldn't move my arm or neck at all. It hurt even worse to sleep. The interesting thing about what you wrote about having bloodwork, I lost all the movement in my arm 4 days after having a cortizone shot into my shoulder. I know it did something to me to make it worse. Good luck. I've been trying to get an answer since August.

My sister was diagnosed with parsonage-turner syndrome today. She has a three week old baby and has lost use of both arms. She is in extreme pain and i do not like to see her on a lot of pain pills because she cannot enjoy her son. She is very depressed and helpless. Please if there is any way that anybody knows that she can have relief and ways we can help her make it through these symptoms till the virus runs its course.She is willing to try anything. Any info would be greatly appriecated.

When I was having the really bad pain, I found that being in a hot tub or shower worked as good as any medcine. I kept thinking I was lucky that my kids were bigger and didn't need me to hold them. I feel bad for her. Hopefully it will only last 2 weeks for her. She should try to have someone slowly lift her arms for her each day to prevent her from getting frozen shoulder.

My symptoms started with a stiff neck with sharp pains to my scapula. I had limited movement in my arm. My right shoulder droops & is tilted forward. A month later the pain was so bad I couldn't move my neck or arm at all for 2 weeks. Now I'm back to where I started exept I get stiff if I'm in one position too long, and when I sleep I feel like I have a bad stiff neck. Does these symptoms sound like everyone elses? Has anyone gotten over this yet? My symtoms started 2 weeks after traveling on an airplane. Has that happened to anyone else? Please respond. I'd appreciate it. Donna

for me, consciously keeping my posture more alligned and heating my neck and arm were the only things that helped the pain at all

I hope this passes for your sister soon!
-francine

I suffered from parsonage Turner Syndrome starting in 1987 and it took over a year to get diagnosed. I had a very severe case. Both sides were affected and I thnbk the nerve network took two years to heal. After many years of rehabbing I have some suggestions that I hope will be helpful.

-MUCH of my recuperation involved trying to undo the soft tissue damage that occurred to my shoulders while my nerves were injured.
-Try to keep reasonably flexible by going to physical therapy to do very mild passive stretching, massage, ultrasound, and SIMPLE shoulder excercises so that you do not get frozen shoulders. Do not let the P.T. go to fast!
-Be careful not to "force yourself" to get stronger. Try to minimize injury while your nerves are healing.
-Do not use your shoulders in a way that involves much overhead movement as your neuro-muscular mechanics are not working properly and this may cause secondary complications such as a torn rotator cuff,etc.
-Do not try to strenghten your shoulders and arms before the nerves heal, as it may cause repeated muscle and tendon strains and sprains.
-When it is okay to excercise start while standing in a pool as resistance exercises are very helpful and safe. Do not start swimming until you know your handle the overhead movements.
-I found aspirin to work better for the burning pain than almost any other medication.
-Don't give up! Think of yourself as the tortoise in the parable. Take is slow and steady. It's easier to try and force yourself to get better than to listen to your body and take baby steps. Going too fast can cause a signifcant setback.
-Take an anti-depressant for your feelings of discouragement and depression.
-Ice worked much better for me than heat.
-Try to keep your legs from becoming weak by walking or using a stationary bike if possible.
-I stopped trying to figure our how I got sick and focused on what I needed to do to to get better. It is hard work!
-In the end it has made me a more caring, empathetic person. I realize that I'm a very strong minded person. My wife was and continues to be wonderful to me. When I was at the depths of my depression she said," I'll never give up on you as long as you never give up on yourself" These simple words started me on the road to recovery.

Good luck,
Fred

Fred-When you had this did you lose all movement in the arms for just 2 weeks & then have limited movement afterwards. Do you progressively get better or do you stay the same for 2 years. I've also had a tightening feeling in my right leg. I don't know if that's part of it also. Did you fully recover? Donna

Francine-how long have you had this and how are you doing now? Donna

Hi Donna,Before you read this response, I had a very severe case (worst 3%) and most people seem to heal much better than I did.

I never really completely lost the abilty to move my arms but the pain and weakness in my scapula were so intense that I tried not to move them.(An impossible task) The pain and weakness got worse for about 9 months, and the burning lasted longer. Eventually the nerves healed but it was almost two years. At that point however I had developed frozen shoulder as well as a torn rotator cuff, so the rehabbing took a long time. I found that my muscles did not automtically strenghten and I had to go through a progam to gradually build them up. I also had to relearn to use my shoulder properly again. I hate to say it but it took me almost 14 years. Now I'm 50 and in better shape than most people my age! Interestingly my knees stopped tracking properly and I developed Chondromalagia. I don't know if it was related the "virus" that I caught or just that I was so inactive that they weakened.
Fred

im not sure if i have had pts, but in 1997 i had terrible pain in my shoulder one night, doctor at the time thought i had congenital winging of the scapula, then i saw an army doctor, who said it was winging due to a damaged thoracic nerve, because i had had a viral illness prior ro the winging.then 3 years later after it had healed, i gave birth to my son, 3 days later ended up in a&e with the winging and pain returning, now three n a bit years on i am suffering with flu, and my arm is in agony, i am frightned that the winging is going to come back, i didnt get much sympathy other than from my husband for the last two times so i dont think ill tell anyone if it does, I would like to know how they diagnose parsonage turner syndrome, so i can let my doctor know, then i might get some treatment,