Parsonage turner syndrome *

Posted by adriennes @adriennes, Sep 9, 2017

I was diagnosed with parsonage turner last November after 2 months of agony, while I am able to function now, I’m still experiencing severe weakness, numbness, pain, this is unusual im told, but having it as a woman is unusual also. Does anyone have any experience with this?

@confused1955

HI I hope I’m in the right group. I’ll start with my pre-existing conditions in case they are in any way a part of my current issues. 2009 I was diagnosed with degenerative disc disease (5 discs completely gone), osteoarthritis, osteoporosis, and scoliosis. I have been taking gabapentin for nerve pain in my lower back where I have a crushed vertebrae that is pinching nerves and causes a lot sciatica pain. Dr’s changed other pain medication over the years and I am OK with current ones. I take 9mg long acting dilaudid morning and night. I also have 2mg dilaudid for breakthrough pain, usually 2pm and 11pm but I am prescribed 4 per day but most of the time I just stick to the 2. Ok so that was my life. I have been in bed 4 years in April as I am unable to sit. To leave the house I ride laying across the back seat of a pick up truck. I was cooking, cleaning and designing clothing and purses. I could stand and cut fabric etc. But the sewing I did mostly by hand laying flat on my back.

Over the past two years I have been steadily loosing weight. Over that time I have gone from a healthy 168lbs down to skin and bones at 102 lbs. Also I received 18 tick bites that year. I had a bullseye on only one and my Dr at the time gave me 2 different antibiotics for 10 days. I thought that was weird without any testing but I completed the meds.

On April 10th 2017 I woke up with pain in the muscles and joints in my right arm. Also I was unable to touch my thumb and forefinger together. The palm of my hand, my thumb, forefinger and middle finger were burning like hot oil. Ten days later my left arm and hand were now exactly the same as my left. So of course now comes the tests. Several series of blood tests came back negative. Finally my first appointment with neurologist. Tech came in and did about an hour of testing with the tongs then the neurologist came in and did the EMG. two hours of her digging with the needles to find where the breakdown was. It wasn’t carpal tunnel like everyone thought. It is pinched in the center of my forearm and totally had the neurologist confused, I could tell by the look on her face this was not something she had ever seen before. She verbally admitted she was befuddled and came up with another long list of blood tests. Within 48 hours I had a heart attack at home. No pain, I just kept telling my husband I felt weird. We live on a farm in the prairies so he took me to our little hospital the Dr. Had me transfered by jet to the city. As I was being transfered to the stretcher the Dr. Said to the ambulance driver that I had Celiac disease, I had never heard this until that moment. Waited in hospital 6 days for an angyogram then was sent home with 3 new prescriptions.

Several weeks later my primary care physician called to say neurologist wanted me to see the head neurologist from her team and wanted me retested. (Side note. Due to a belly full of medical shrapnel from 1971 I am unable to have an MRI)
When I arrived for my second appointment tech was ready to start testing with the tongs but when I mentioned that I had had a heart attack less than 48 hours after they tested the last time. He said he would have to talk to the neurologist first. He came back and took me where I could lay and wait to talk with her. She came in and proceeded to tell me that her and her colleague agreed I had Parsonage Turner Syndrome, however when I asked her about it she said it was a genetic nerve syndrome but it was so rare they really couldn’t tell me much except that because it didn’t get better within the first 2 months that I was suffering from an even more rare type. She said it was now chronic and wasting and they would send me to a pain mgmt Centre because the best they could do now was control the pain. So now how long was I going to wait for this. We’ll a few days later they had a cancelation so I was still confused but hopeful. Well hopefully turned to hopeless when I met with the anesthesiologist. He knew nothing about my condition. Did not know it was bilateral (both sides). His suggestion was Lyrica. Yikes. I’m on the cheaper, must cheaper drug already with few side affects. Now he wants me to spend at least 400% more with serious psychological side affects. Well simply I can’t afford it. Then an anti inflammatory also designer one, starts with a Canadian but I can’t remember it right now. Again serious side affects, not recommended for people with heart issues. I knew that from having listened to commercials. Again huge price tag. No thanks. Then I got up from the stretcher and was done and wanted to leave, but to my shock he pushed my shoulder back towards the stretcher, of course i lost my balance. What he was trying to keep me for is he wanted me to come weekly, 90 miles each way laying in the back of a truck, for a lidocaine infusion. Looked that up again not recommended for people with heart conditions.

So here is where I am at now. I have read everything about Parsonage Turner Syndrome and medications. I’m so confused when I read about this syndrome because it sounds nothing like my symptoms. However because two doctors already have agreed I have no chance for a second opinion so here I am desperate and confused. If anyone can help I would be eternally grateful.

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Do you get constant stabbing in shoulder area?

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@confused1955

HI I hope I’m in the right group. I’ll start with my pre-existing conditions in case they are in any way a part of my current issues. 2009 I was diagnosed with degenerative disc disease (5 discs completely gone), osteoarthritis, osteoporosis, and scoliosis. I have been taking gabapentin for nerve pain in my lower back where I have a crushed vertebrae that is pinching nerves and causes a lot sciatica pain. Dr’s changed other pain medication over the years and I am OK with current ones. I take 9mg long acting dilaudid morning and night. I also have 2mg dilaudid for breakthrough pain, usually 2pm and 11pm but I am prescribed 4 per day but most of the time I just stick to the 2. Ok so that was my life. I have been in bed 4 years in April as I am unable to sit. To leave the house I ride laying across the back seat of a pick up truck. I was cooking, cleaning and designing clothing and purses. I could stand and cut fabric etc. But the sewing I did mostly by hand laying flat on my back.

Over the past two years I have been steadily loosing weight. Over that time I have gone from a healthy 168lbs down to skin and bones at 102 lbs. Also I received 18 tick bites that year. I had a bullseye on only one and my Dr at the time gave me 2 different antibiotics for 10 days. I thought that was weird without any testing but I completed the meds.

On April 10th 2017 I woke up with pain in the muscles and joints in my right arm. Also I was unable to touch my thumb and forefinger together. The palm of my hand, my thumb, forefinger and middle finger were burning like hot oil. Ten days later my left arm and hand were now exactly the same as my left. So of course now comes the tests. Several series of blood tests came back negative. Finally my first appointment with neurologist. Tech came in and did about an hour of testing with the tongs then the neurologist came in and did the EMG. two hours of her digging with the needles to find where the breakdown was. It wasn’t carpal tunnel like everyone thought. It is pinched in the center of my forearm and totally had the neurologist confused, I could tell by the look on her face this was not something she had ever seen before. She verbally admitted she was befuddled and came up with another long list of blood tests. Within 48 hours I had a heart attack at home. No pain, I just kept telling my husband I felt weird. We live on a farm in the prairies so he took me to our little hospital the Dr. Had me transfered by jet to the city. As I was being transfered to the stretcher the Dr. Said to the ambulance driver that I had Celiac disease, I had never heard this until that moment. Waited in hospital 6 days for an angyogram then was sent home with 3 new prescriptions.

Several weeks later my primary care physician called to say neurologist wanted me to see the head neurologist from her team and wanted me retested. (Side note. Due to a belly full of medical shrapnel from 1971 I am unable to have an MRI)
When I arrived for my second appointment tech was ready to start testing with the tongs but when I mentioned that I had had a heart attack less than 48 hours after they tested the last time. He said he would have to talk to the neurologist first. He came back and took me where I could lay and wait to talk with her. She came in and proceeded to tell me that her and her colleague agreed I had Parsonage Turner Syndrome, however when I asked her about it she said it was a genetic nerve syndrome but it was so rare they really couldn’t tell me much except that because it didn’t get better within the first 2 months that I was suffering from an even more rare type. She said it was now chronic and wasting and they would send me to a pain mgmt Centre because the best they could do now was control the pain. So now how long was I going to wait for this. We’ll a few days later they had a cancelation so I was still confused but hopeful. Well hopefully turned to hopeless when I met with the anesthesiologist. He knew nothing about my condition. Did not know it was bilateral (both sides). His suggestion was Lyrica. Yikes. I’m on the cheaper, must cheaper drug already with few side affects. Now he wants me to spend at least 400% more with serious psychological side affects. Well simply I can’t afford it. Then an anti inflammatory also designer one, starts with a Canadian but I can’t remember it right now. Again serious side affects, not recommended for people with heart issues. I knew that from having listened to commercials. Again huge price tag. No thanks. Then I got up from the stretcher and was done and wanted to leave, but to my shock he pushed my shoulder back towards the stretcher, of course i lost my balance. What he was trying to keep me for is he wanted me to come weekly, 90 miles each way laying in the back of a truck, for a lidocaine infusion. Looked that up again not recommended for people with heart conditions.

So here is where I am at now. I have read everything about Parsonage Turner Syndrome and medications. I’m so confused when I read about this syndrome because it sounds nothing like my symptoms. However because two doctors already have agreed I have no chance for a second opinion so here I am desperate and confused. If anyone can help I would be eternally grateful.

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That's the classic symptom..

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Hello good people. I have been diagnosed wit pts for about 4 months now. Im a male 42 yrs. I believe it is more common amongs males to get this syndrome. With me there was no surgery or trauma. Just woke up 1 morning with neck pain & thought it from sleeping too much on 1 side. A week later had this stabbing pain on the shoulder bone. Been for MRI as well as nerve conductive studies. Doctors here dont have much experience with this type of syndrome. Currently going cor physio every 2 weeks but not much help there. I have also developed numbness and some pain on my right upper thigh jus below the hip bone. I think it is the pelvic area. I still have alot of pain. Part or the arm is totally numb. Theres also waste muscle. So from what i have been reading on this corum thus far is that this takes a long time to heal. I have also read somewhere that nerve transplant can also help with the recovery. I currently do not sleep much at night due to the pain. Pain is not as bad as the 1st couple of weeks though. Any advise regarding nerve surgery? Pardon me if i take some time to respond as im in south africa. The time zones are way different.

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@yaseen786

Hello good people. I have been diagnosed wit pts for about 4 months now. Im a male 42 yrs. I believe it is more common amongs males to get this syndrome. With me there was no surgery or trauma. Just woke up 1 morning with neck pain & thought it from sleeping too much on 1 side. A week later had this stabbing pain on the shoulder bone. Been for MRI as well as nerve conductive studies. Doctors here dont have much experience with this type of syndrome. Currently going cor physio every 2 weeks but not much help there. I have also developed numbness and some pain on my right upper thigh jus below the hip bone. I think it is the pelvic area. I still have alot of pain. Part or the arm is totally numb. Theres also waste muscle. So from what i have been reading on this corum thus far is that this takes a long time to heal. I have also read somewhere that nerve transplant can also help with the recovery. I currently do not sleep much at night due to the pain. Pain is not as bad as the 1st couple of weeks though. Any advise regarding nerve surgery? Pardon me if i take some time to respond as im in south africa. The time zones are way different.

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Hello! It’s funny that I was reading online this morning about surgery for PTS. It’s the first time I’ve ever seen surgery for it. It was always take your pain meds, wait it out, and hope for the best. This is from the Hospital for Special Surgery (HSS) website:

With exciting new MRI and ultrasound imaging protocols, we have identified tiny twists or 'hourglass' constrictions inside nerves that were previously healthy, allowing us to diagnose patients more quickly and predict those who may not recover," said Dr. Scott Wolfe, chief emeritus of Hand and Upper Extremity Service at HSS. "In order to save the affected muscle, we’ve identified surgical techniques that release the nerve and restore function in a matter of months."

You can read more at hss.edu and then search for Parsonage Turner Syndrome. I hope this helps you and others. It’s always best to check with your doctor first. Good luck!

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I have been on here before but over the last month my symptoms have changed. I've been battling either Parsonage Turner Syndrome or Mono Neuritis multiplex, the Drs don't agree. Sent to pain management clinic. I'm on gabapentin I'm not suffering the change to a more costly drug with even worse side affects, they can keep their cymbals I have enough issues as the contradict 2 of my heart medications when he came up with another drug that interacted with my heart medication. I got off the geurney to walk out and he pushed me back against the geurney Andi said #$%%€€&^4÷$%&€*&:$÷%;/=%&. And walked out the door. I'm 63 years old, scoliosis is visible and I weigh 92lbs.

I have been in pain I would have never imagined possible. Others don't see it. Their my hands I see it. Lumps bumps weird stretching. The inability to take off lids, reach in a cupboard but not being sure if your strength will hold it.

I'm fortune I had been bedridden for 2 1/2 years prior due to five different diseases of the spine. The osteoporosis and osteoarthritis have turned to vertebrae into 2 numbers above dust. Just waiting to see how they will fall. No there is no possible surgery. My MRI has been to the finest spinal clinics in the US in 2008 they agreed between 10 mos and 10 years I would be paralyzed but I can still walk through Wal-Mart. I can't sit in the car to get anywhere. I have to lay in the backseat. In my province you can no longer get waiver from your Dr. For seat belts. So every time I leave the house I'm facing a $280.00 fine. My alternative is ambulance and where I live it's easier than bringing an ambulance over the rough roads. So it's cheaper to try to beat the seatbelt ticket. If I ever get one I will gladly go to court and have a judge's decision. I did it before and won.

Well over this past month I feel like I have been given hope by an angel. I'm just an ordinary person, my husband works, I have a care giver and a family that are 72km away. Things pop up on Facebook and I was drawn to this person that was always giving and giving. Driving to pu medication for seniors and disabled people. Taking them to Drs, dentists , lawyers. Helping so many, but he didn't have a reliable vertical that was good on gas. I thought wow this single dad of three I'll call him Paul gives and gives and
Can't get a break. So other than reading how thankful people were to him. I never knew him but I knew it was time. This is going to sound old but it was babied for most of its life but it was my mom's so I would turn it into a planter before I would sell it. Here I was calling him and saying he could have my mom's car. We had talked a lot about pain and about CBD OIL. it's been a month and I already feel way better in my gastrointestinal tract. For the fist month I took a dropper full of clear 1000mg CBD OIL FROM HEMP. No possible way to get high, but definite way to help nerve pain. I've noticed differences. Times when it would normally feel like boiling oil, there would be a weird feeling changing all the time. Pain days 10+ but weird feelings 1+ at worst. Ok one month went by and my friend came to see me from 150km s away to help. I'll tell you later about just to help. So I decided now that I knew what was going on so I chose 2000mg CBD from hemp. No THC. Seperetly I got
THC oil (This is at your own risk I'm not giving advice. I'm telling my story)

So last night 1 dropper about 60 drops of 1000mg CBD OIL FROM HEMP
Into that I put 5 drops of THC OIL and went to sleep. When I woke up it was like I got arthritis in 3 joints on each hand that I couldn't feel over the boiling oil feeling. The rest of my hands FEEL ALMOST NORMAL LIKE 90% AND IT BEEN THAT WAY ALL DAY. I WANT TO CRY THEY FEEL SO GOOD. ON TOP OF THAT THERE IS A JAR OF SAUVE THAT GOES ON YOUR HANDS , it is 5% molecularly Distilled THC. You twist the bottom pushing creme up. You will always know your exact dosage.

If I hadn't have given Paul my car, he would have never came by with treats. Remember I said I'd finish the story. Due to a club he belongs to believes in pain over profit, provide it for free. My pharmacuticales most I'm stuck up $400 a month are killing me when I'm being relieve, not cued yet but huge relief do free because small farma cares. I will never have to pay for my medicinals. First thing to work. Can't wait to see where I am at the end of next month. Skydiving. Sorry private joke. An d sorry about the tells novella

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@adriennes

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

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Greetings to you all!
I was just diagnosed with PTS this morning. Have been reading nearly everything I can find on the topic and came across this group. At least I have an answer for the pain. Was mis-diagnosed by my Primary Care doc and by an ER doc when the pain became so extreme, I gave in and went to a local ER to get some answers, or so I thought.

My Ortho doc who did my Rotator cuff surgery on the same shoulder 3 years ago, gave me his diagnosis this morning. He placed me on Gabapentin & a Methylpredisolone dose pack. Hopefully these will begin to ease the nerves. Wondering what others take to help them sleep at night?

Glad there's a group like this who understands. Thanks for the add!

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I'm a 57 year old female with PTS. My story starts in my early 20's when I started having episodes of extreme nerve pain with resulting nerve damage and winging of my scapulas. I had 3 or 4 episodes during my 20s which I attributed to overuse of my shoulders while playing volleyball. When I woke up in early April 2018 with that screaming arm pain I knew it was the same thing I had previously experienced… but I was wrong. This time the pain came down through my elbow into my hand. Eventually my hand (middle finger, index and thumb) became numb. Moving my arm out away from my body, below my waist or above my head would cause strong electric shock sensations up my hand clear up to my elbow. I had cervical spine xrays taken which showed several bad discs… so I waited for 6 1/2 weeks for a spinal injection that was supposed to solve my pain. That doctor told me I need to see a neurosurgeon and that he felt I needed a cspine fusion. So another appointment to see that doctor… luckily this doctor knew about PTS and suggested that although my MRI showed issues, those issues did not explain my symptoms. By this time my hand pain was still intolerable, with my index finger having become rigid. I went to see a hand doctor who says I have sever tendinitis due to extended period of swelling in my hand. Steroid injection and now PT to try and recover ROM in my hand. If that doesn't work I will need a tendon release procedure. Of course this is my right hand (dominant hand). Even if this fixes my tendinitis I will be left with numbness in hand. Still taking full dose of Gabapentin on a daily basis and hand pain goes off the chart if I don't take on time Here's my suggestion to help anyone else with hand pain: compression gloves! Found them at the beginning of July and can't be without them now!!

Knowing I have PTS answers alot of questions for me about why I've had these reoccurring events in my life. There are a couple more events I didn't share here. Over the years I was told I had frozen shoulder, shoulder problems, cspine issues, carpel tunnel etc. It's only now that I realize there may be one common thread between all these issues – PTS!!

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@jjspokane61

I'm a 57 year old female with PTS. My story starts in my early 20's when I started having episodes of extreme nerve pain with resulting nerve damage and winging of my scapulas. I had 3 or 4 episodes during my 20s which I attributed to overuse of my shoulders while playing volleyball. When I woke up in early April 2018 with that screaming arm pain I knew it was the same thing I had previously experienced… but I was wrong. This time the pain came down through my elbow into my hand. Eventually my hand (middle finger, index and thumb) became numb. Moving my arm out away from my body, below my waist or above my head would cause strong electric shock sensations up my hand clear up to my elbow. I had cervical spine xrays taken which showed several bad discs… so I waited for 6 1/2 weeks for a spinal injection that was supposed to solve my pain. That doctor told me I need to see a neurosurgeon and that he felt I needed a cspine fusion. So another appointment to see that doctor… luckily this doctor knew about PTS and suggested that although my MRI showed issues, those issues did not explain my symptoms. By this time my hand pain was still intolerable, with my index finger having become rigid. I went to see a hand doctor who says I have sever tendinitis due to extended period of swelling in my hand. Steroid injection and now PT to try and recover ROM in my hand. If that doesn't work I will need a tendon release procedure. Of course this is my right hand (dominant hand). Even if this fixes my tendinitis I will be left with numbness in hand. Still taking full dose of Gabapentin on a daily basis and hand pain goes off the chart if I don't take on time Here's my suggestion to help anyone else with hand pain: compression gloves! Found them at the beginning of July and can't be without them now!!

Knowing I have PTS answers alot of questions for me about why I've had these reoccurring events in my life. There are a couple more events I didn't share here. Over the years I was told I had frozen shoulder, shoulder problems, cspine issues, carpel tunnel etc. It's only now that I realize there may be one common thread between all these issues – PTS!!

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Hello! Welcome- @jjspokane61. I'm glad you have found this thread and thankful you have shared your story and that you have shared that compression gloves help you. That's fabulous! 37 years is a long time to have been living with this.

Is there a time in the day- maybe right when you wake that you feel no pain? or is it constant?

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@jjspokane61

I'm a 57 year old female with PTS. My story starts in my early 20's when I started having episodes of extreme nerve pain with resulting nerve damage and winging of my scapulas. I had 3 or 4 episodes during my 20s which I attributed to overuse of my shoulders while playing volleyball. When I woke up in early April 2018 with that screaming arm pain I knew it was the same thing I had previously experienced… but I was wrong. This time the pain came down through my elbow into my hand. Eventually my hand (middle finger, index and thumb) became numb. Moving my arm out away from my body, below my waist or above my head would cause strong electric shock sensations up my hand clear up to my elbow. I had cervical spine xrays taken which showed several bad discs… so I waited for 6 1/2 weeks for a spinal injection that was supposed to solve my pain. That doctor told me I need to see a neurosurgeon and that he felt I needed a cspine fusion. So another appointment to see that doctor… luckily this doctor knew about PTS and suggested that although my MRI showed issues, those issues did not explain my symptoms. By this time my hand pain was still intolerable, with my index finger having become rigid. I went to see a hand doctor who says I have sever tendinitis due to extended period of swelling in my hand. Steroid injection and now PT to try and recover ROM in my hand. If that doesn't work I will need a tendon release procedure. Of course this is my right hand (dominant hand). Even if this fixes my tendinitis I will be left with numbness in hand. Still taking full dose of Gabapentin on a daily basis and hand pain goes off the chart if I don't take on time Here's my suggestion to help anyone else with hand pain: compression gloves! Found them at the beginning of July and can't be without them now!!

Knowing I have PTS answers alot of questions for me about why I've had these reoccurring events in my life. There are a couple more events I didn't share here. Over the years I was told I had frozen shoulder, shoulder problems, cspine issues, carpel tunnel etc. It's only now that I realize there may be one common thread between all these issues – PTS!!

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Dear jjspokane61, I’m sorry for what you are going through. You are not alone. I have the same nerve pain as you in my right arm from my elbow to my fingers- thumb, index, and middle. The neurologist thinks it is Parsonage Turner Syndrome. It all began in February 2017 with severe shoulder pain. Eventually the pain progressed to my arm and hand and disappeared from my shoulder and neck. I had ACDF surgery C6/C7 in May 2017. I regret having the surgery. The surgery didn’t improve my condition and two weeks after the surgery I developed the same nerve pain in the same three fingers of my left hand. It has now been 15 months since my initial shoulder pain and my pain continues to worsen. I wear compression gloves and a brace for my right hand. I also use a heating pad which I wrap around my arm and hand. This helps more than anything else. My pain management doctor prescribes Lyrica and opioids. That help a little with the pain. Not that much, however.
Thanks for sharing your story. I hope things improve for both of us.

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I feel for anyone going through this pain. This is the only time I have ever entered any kind of forum, because it is a lonely feeling. I did not have any luck with the Anti depressants. The only way to deal with the pai was to either use a hot patch preferably a hot water bottle or put an ice pack on the area of pain which as we all know can vary from the neck to you fingers. I spent to weeks in late March in Miami Beach having come down with Parsonage Turner in October having had A shgoulder operation for frozen should in February 2017. While in Miami, I did 3 intense session of accupunture followed by cupping. About a week later the paid began to go and within 10 days it was basically gone and I went from six to 8 pills a day to none. I soon started physio and have not had a bad day since May 1. The muscle wastage is still there and the strength is about 70%. I have started Pilates which is really good for it.
I do live in fear of a relapse but am just happy not to be in so much pain, which is why I am reaching out to you.

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@painful

I feel for anyone going through this pain. This is the only time I have ever entered any kind of forum, because it is a lonely feeling. I did not have any luck with the Anti depressants. The only way to deal with the pai was to either use a hot patch preferably a hot water bottle or put an ice pack on the area of pain which as we all know can vary from the neck to you fingers. I spent to weeks in late March in Miami Beach having come down with Parsonage Turner in October having had A shgoulder operation for frozen should in February 2017. While in Miami, I did 3 intense session of accupunture followed by cupping. About a week later the paid began to go and within 10 days it was basically gone and I went from six to 8 pills a day to none. I soon started physio and have not had a bad day since May 1. The muscle wastage is still there and the strength is about 70%. I have started Pilates which is really good for it.
I do live in fear of a relapse but am just happy not to be in so much pain, which is why I am reaching out to you.

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Thank you so much. I never thought of acupuncture.

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@painful

I feel for anyone going through this pain. This is the only time I have ever entered any kind of forum, because it is a lonely feeling. I did not have any luck with the Anti depressants. The only way to deal with the pai was to either use a hot patch preferably a hot water bottle or put an ice pack on the area of pain which as we all know can vary from the neck to you fingers. I spent to weeks in late March in Miami Beach having come down with Parsonage Turner in October having had A shgoulder operation for frozen should in February 2017. While in Miami, I did 3 intense session of accupunture followed by cupping. About a week later the paid began to go and within 10 days it was basically gone and I went from six to 8 pills a day to none. I soon started physio and have not had a bad day since May 1. The muscle wastage is still there and the strength is about 70%. I have started Pilates which is really good for it.
I do live in fear of a relapse but am just happy not to be in so much pain, which is why I am reaching out to you.

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I was sent to that particular Acupuncturist because of her cupping skills. I thought the whole cupping thing was a bit of a novelty at the time, but at that stage I was happy to try anything. I now believe that it was the cupping more than the acupuncture. There was no immediate change until a week after ny third session. I was in my fifth month of pain. Good luck

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@jjspokane61

I'm a 57 year old female with PTS. My story starts in my early 20's when I started having episodes of extreme nerve pain with resulting nerve damage and winging of my scapulas. I had 3 or 4 episodes during my 20s which I attributed to overuse of my shoulders while playing volleyball. When I woke up in early April 2018 with that screaming arm pain I knew it was the same thing I had previously experienced… but I was wrong. This time the pain came down through my elbow into my hand. Eventually my hand (middle finger, index and thumb) became numb. Moving my arm out away from my body, below my waist or above my head would cause strong electric shock sensations up my hand clear up to my elbow. I had cervical spine xrays taken which showed several bad discs… so I waited for 6 1/2 weeks for a spinal injection that was supposed to solve my pain. That doctor told me I need to see a neurosurgeon and that he felt I needed a cspine fusion. So another appointment to see that doctor… luckily this doctor knew about PTS and suggested that although my MRI showed issues, those issues did not explain my symptoms. By this time my hand pain was still intolerable, with my index finger having become rigid. I went to see a hand doctor who says I have sever tendinitis due to extended period of swelling in my hand. Steroid injection and now PT to try and recover ROM in my hand. If that doesn't work I will need a tendon release procedure. Of course this is my right hand (dominant hand). Even if this fixes my tendinitis I will be left with numbness in hand. Still taking full dose of Gabapentin on a daily basis and hand pain goes off the chart if I don't take on time Here's my suggestion to help anyone else with hand pain: compression gloves! Found them at the beginning of July and can't be without them now!!

Knowing I have PTS answers alot of questions for me about why I've had these reoccurring events in my life. There are a couple more events I didn't share here. Over the years I was told I had frozen shoulder, shoulder problems, cspine issues, carpel tunnel etc. It's only now that I realize there may be one common thread between all these issues – PTS!!

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Hello patrick17 – I'm so grateful to my excellent neurosurgeon who recognized this as NOT a cspine issue! The last thing I want is a surgery I don't need that would not have resolved the pain and likely caused alot more like in your case! So sorry you had to go through that – it's a little discouraging to see you have been dealing with hand pain for so long! The gabapentin seems to handle most of my pain – until I forget to take it then things get crazy. My neck and shoulder pain is gone, elbow still gets cranky when I try to straighten my arm. My arm is definitely weak. Do you have the issue with not having the full range of motion with your arm? I had a spinal injection (when they were still saying it was cspine) and got back my range of motion in 3 weeks. Not sure if that's a coincidence or what. I'm scheduled for another one in Sept – if there's ANY chance it helped the first time I'm going to go ahead with it. I see another neurologist the end of Aug who is supposed to be able to confirm my PTS diagnosis – but I'm reluctant to go through another nerve conduction study if it's just for that reason.

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@jjspokane61

I'm a 57 year old female with PTS. My story starts in my early 20's when I started having episodes of extreme nerve pain with resulting nerve damage and winging of my scapulas. I had 3 or 4 episodes during my 20s which I attributed to overuse of my shoulders while playing volleyball. When I woke up in early April 2018 with that screaming arm pain I knew it was the same thing I had previously experienced… but I was wrong. This time the pain came down through my elbow into my hand. Eventually my hand (middle finger, index and thumb) became numb. Moving my arm out away from my body, below my waist or above my head would cause strong electric shock sensations up my hand clear up to my elbow. I had cervical spine xrays taken which showed several bad discs… so I waited for 6 1/2 weeks for a spinal injection that was supposed to solve my pain. That doctor told me I need to see a neurosurgeon and that he felt I needed a cspine fusion. So another appointment to see that doctor… luckily this doctor knew about PTS and suggested that although my MRI showed issues, those issues did not explain my symptoms. By this time my hand pain was still intolerable, with my index finger having become rigid. I went to see a hand doctor who says I have sever tendinitis due to extended period of swelling in my hand. Steroid injection and now PT to try and recover ROM in my hand. If that doesn't work I will need a tendon release procedure. Of course this is my right hand (dominant hand). Even if this fixes my tendinitis I will be left with numbness in hand. Still taking full dose of Gabapentin on a daily basis and hand pain goes off the chart if I don't take on time Here's my suggestion to help anyone else with hand pain: compression gloves! Found them at the beginning of July and can't be without them now!!

Knowing I have PTS answers alot of questions for me about why I've had these reoccurring events in my life. There are a couple more events I didn't share here. Over the years I was told I had frozen shoulder, shoulder problems, cspine issues, carpel tunnel etc. It's only now that I realize there may be one common thread between all these issues – PTS!!

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My conduction studies were a night mare. My hands and arms were jumping and falling . Within 48 HRS I had a heart attack brought on by pain and stress. I had a terrible neurologist and am on the look for a new one. I've already made appointment for acupuncture. We may have lousy neurologists but great acupuncturist. He taught in China for 9 years and has now been here for 25 years. Wish you good health.

Liked by Ron Rubenzer

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@jjspokane61

I'm a 57 year old female with PTS. My story starts in my early 20's when I started having episodes of extreme nerve pain with resulting nerve damage and winging of my scapulas. I had 3 or 4 episodes during my 20s which I attributed to overuse of my shoulders while playing volleyball. When I woke up in early April 2018 with that screaming arm pain I knew it was the same thing I had previously experienced… but I was wrong. This time the pain came down through my elbow into my hand. Eventually my hand (middle finger, index and thumb) became numb. Moving my arm out away from my body, below my waist or above my head would cause strong electric shock sensations up my hand clear up to my elbow. I had cervical spine xrays taken which showed several bad discs… so I waited for 6 1/2 weeks for a spinal injection that was supposed to solve my pain. That doctor told me I need to see a neurosurgeon and that he felt I needed a cspine fusion. So another appointment to see that doctor… luckily this doctor knew about PTS and suggested that although my MRI showed issues, those issues did not explain my symptoms. By this time my hand pain was still intolerable, with my index finger having become rigid. I went to see a hand doctor who says I have sever tendinitis due to extended period of swelling in my hand. Steroid injection and now PT to try and recover ROM in my hand. If that doesn't work I will need a tendon release procedure. Of course this is my right hand (dominant hand). Even if this fixes my tendinitis I will be left with numbness in hand. Still taking full dose of Gabapentin on a daily basis and hand pain goes off the chart if I don't take on time Here's my suggestion to help anyone else with hand pain: compression gloves! Found them at the beginning of July and can't be without them now!!

Knowing I have PTS answers alot of questions for me about why I've had these reoccurring events in my life. There are a couple more events I didn't share here. Over the years I was told I had frozen shoulder, shoulder problems, cspine issues, carpel tunnel etc. It's only now that I realize there may be one common thread between all these issues – PTS!!

Jump to this post

Look up Acupunture on Medscape if you want. I always see if a specific practitioner accepts insurance. If you have had a heart attack I would definitely see your Cardiologist Before exploring “complementary” treatments. Dr Ron Rubenzer.

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