I was diagnosed with Parsonage Turner Syndrome in December 2017, but my symptoms first started appearing as far back as July 2016. Since then, my life has changed.
While this uncommon neurological disorder seems to vary from person to person, I can only provide you with an account of my personal experience living with Parsonage Turner Syndrome.
My Parsonage Turner Syndrome Onset
Because this started well over two years ago, I cannot say that the following dates and timespans are 100% accurate, but this should at least paint a rough picture of the events leading up to the onset of my Parsonage Turner Syndrome.
First of all, let’s put on the record here that I worked as a software engineer for six years starting in 2012. My first job out of college was at a defense contractor. Just over a year into my working career, I started to battle with headaches and wrist pain at work. In retrospect, I easily combatted these issues by getting a pair of computer glasses with an anti-reflective coating and having a keyboard tray installed at my desk. I was able to defeat these desk job injuries as quickly as they developed. The rest of my time at this job was mostly injury free.
Landing a New Job
I switched jobs in August 2015 and began working as a software engineer for a Baltimore hedge fund. This was a great company to work for with many great perks including an on-site gym and subsidized stand up desks. Since I realized that sitting at a desk all day was bad for my health, I ordered a stand up desk in March 2016. At first, I stood up at my desk for the majority of the day. But I recall struggling with either wrist, elbow, forearm, or shoulder pain after some time, so I gradually backed off.
Just a few months later in May 2016, I started to experience pain in my right fingers. Although the pain in my fingers only lasted a week or so, I attributed it to using my computer mouse. The pain moved into my right wrist and lasted there for another week or so. The pattern continued as the pain moved into my forearm, but as a tightness this time. Finally, the forearm tightness eventually went away and moved into my elbow as pain. Again, that elbow pain lasted for at least a week or so.
I went back through my Amazon order history and found that I ordered an ergonomic vertical mouse on June 9, 2016 to help alleviate my arm pain. A couple weeks before that, I returned my weight lifting gloves to Amazon since I wasn’t able to use them in the gym due to my arm pain. As you can see, my exercise routine is already being affected.
Finally, it was time for the Blue Marsh Mile open water swim on July 30, 2016—an event that I attribute to my Parsonage Turner Syndrome.
My Parsonage Turner Syndrome Cause
Although my doctor could neither confirm nor deny it, I believe my neuralgic amyotrophy stemmed from a 1 mile open water swim that I participated in back in July 2016. Let me just say right here that I’ll do my best to not use medical jargon such as “neuralgic amyotrophy”. In this case, neuralgic amyotrophy is synonymous with Parsonage Turner Syndrome.
Anyway, it’s worth pointing out here that I swam competitively from the time I was 6 years old until I graduated college in 2012 when I was 22. After graduating college, I swam on masters swimming teams, but it was not nearly as intense as high school and college. Let’s just say I was in less than ideal shape for the 1 mile swim, but not out of shape either. I should also mention that I participated in the same open was swim in a previous year, so I knew I could handle it.
Tight Latissimus Dorsi Muscle
Okay, enough backstory. After the swim race was over, I noticed that my right latissimus dorsi muscle was very tight, something that I never experiences in my two decades of swimming. This tightness gradually released itself over the next week or so. I didn’t think much of it—all I thought was that I overexerted myself or something.
My recollection of the remainder of 2016 is a bit fuzzy. My latissimus dorsi recovered enough to participate in the Atlantic City Olympic distance triathlon in August of that same year. I don’t recall what my exercise routine was leading up to the triathlon, but I remember being worried about my lat tightening up again. I finished the triathlon and only had mild tightness in my lat.
A text message that I sent three weeks after the triathlon read, “I wish my arm didn’t hurt so I could work out”.
My Parsonage Turner Syndrome Symptoms
By the time the triathlon was over, all pain in my fingers, wrist, forearm, and elbow was gone. Instead, I was experiencing a pretty consistent weakness and fatigue in my right latissimus dorsi—the same area that tightened up in my swim races.
I need to point out here that when I say weakness and fatigue, I don’t mean this in a sense that my muscles aren’t strong. A key point to understanding my Parsonage Turner Syndrome symptoms is to understand that my muscles are not weak. Instead, the primary symptom is a sensation of weakness and fatigue in my latissimus dorsi that is not justified. For example, simple tasks such as typing at a keyboard and using a computer mouse causes this weakness and fatigue. Even driving a car irritates it.
But remember, I was far from being diagnosed at this point, so I wasn’t sure what was going on. I began to struggle to get though an eight hour work day. As a software engineer, 90% of my job is sitting at a desk in front of a computer. Although I had a stand up desk, the symptoms were the same whether I was standing or sitting.
Additionally, due to the weakness in my latissimus dorsi, I could no longer light weights regularly like I used to. Another activity that I had to drastically cut back on was swimming. I even struggled to hunch over and ride a bike without aggravating my symptoms.
Mornings were the best. This was the time of day where I felt the least amount of weakness. But by the end of the day, my latissimus dorsi was yelling at me to stop using it. I would just want to lay down.
Lower Rib Protrusion
On January 26, 2017, I tried on some shirts that my company gave away for free. I know the exact date because I looked back into my photos and found the picture I took of all the free shirts that I got. But I digress.
I remember standing in front of the mirror trying on the shirts and noticing that my lower left ribs were sticking out farther than the other ones. I was shocked and scared. It didn’t hurt. In my two decades of competitive swimming, I always had my shirt off and never noticed such a thing. I knew something was wrong, and I attributed it to my still-undiagnosed “muscle weakness”.
By this time, my theory was that my spine was beginning to curve from poor posture while sitting. Hence, my ribs began to stick out. This thought must’ve already been going through my head because I had ordered a lumbar support for my desk chair from Amazon just three days earlier.
Unsuccessfully Self Treating Myself
In addition to the aforementioned lumbar support and ergonomic vertical mouse, I tried a multitude of other things to try to fix myself. At work, I bought myself an ergonomic keyboard. I experimented with various heights of the stand up desk, but eventually decided to take that out of the equation and began primarily sitting at work.
Then after a workplace ergonomic evaluation from an ergonomic specialist, I had a slide-out keyboard tray installed. Additionally, the ergonomic specialists had me try out a $1,500 Herman Miller ergonomic chair.
Nothing worked.
I bought myself a memory foam mattress in July 2017 thinking that would relieve my symptoms. That didn’t work either.
Still thinking that the underlying issue was muscular, I bought a foam roller. I rolled out my back and lats on a regular basis which felt good, but didn’t really help.
The thing that probably helped me the most was yoga. Another great perk of the company I worked for was weekly on-site yoga classes. Not having much yoga experience prior, I found yoga to stretch and realign my body which in turn temporarily relieved my symptoms.
Parsonage Turner Syndrome Diagnosis
For me, 2017 was filled with dozens of doctor and specialist visits. In addition to unsuccessfully treating myself, I sought the professional help of numerous doctors and experts.
| Date | Doctor/Specialist | Visit Summary |
|---|---|---|
| 02/28/2017 | Primary care provider | Ordered bloodwork |
| 03/03/2017 | Chiropractor | Initial evaluation |
| 03/08/2017 | Chiropractor | Manual adjustment |
| 04/20/2017 | Orthopedic surgeon | X-ray showed 7% curvature of spine, referred me to 6 weeks physical therapy |
| 05/01/2017 | Physical therapist | Physical therapy |
| 05/03/2017 | Physical therapist | Physical therapy |
| 05/08/2017 | Physical therapist | Physical therapy |
| 05/10/2017 | Physical therapist | Physical therapy |
| 05/16/2017 | Physical therapist | Physical therapy |
| 05/23/2017 | Physical therapist | Physical therapy |
| 05/25/2017 | Physical therapist | Physical therapy |
| 06/01/2017 | Physical therapist | Physical therapy |
| 07/31/2017 | Chiropractor | Activator method chiropractic technique |
| 08/09/2017 | Chiropractor | Activator method chiropractic technique |
| 08/16/2017 | Chiropractor | Activator method chiropractic technique |
| 08/23/2017 | Chiropractor | Activator method chiropractic technique |
| 08/30/2017 | Chiropractor | Activator method chiropractic technique |
| 09/01/2017 | Chiropractor | Manual adjustment |
| 09/25/2017 | Primary care provider | Referred to rheumatologist and massage therapist, ordered X-rays |
| 10/26/2017 | Massage therapist | 60 minute deep tissue massage |
| 10/31/2017 | Radiologist | X-ray of bilateral ribs and check were normal |
| 11/16/2017 | Rhumatologist | Ruled out rheumatological issue, but ordered bloodwork to be sure |
| 11/16/2017 | Primary care provider | Referred to neurologist, ordered MRIs and CT scans |
| 11/20/2017 | Radiologist | Scans show mild dextroscoliosis of thoracolumbar spine, straightening of usual cervical lordosis |
| 12/07/2017 | Rhumatologist | Bloodwork rules out arthritis or rheumatological issue |
| 12/08/2017 | Massage therapist | 90 minute deep tissue massage |
| 12/14/2017 | Neurosurgeon | Incidental persistent central canal, right rib discomfort of unclear etiology |
| 12/18/2017 | Neurologist | Ordered EMG and nerve conduction study tests |
| 12/22/2017 | Neurologist | Tests reveal Parsonage Turner Syndrome, referred to physical therapy and 12 weeks FMLA |
It was a long, expensive, and frustrating year until I was finally diagnosed with Parsonage Turner Syndrome. It was ultimately the electromyography test and the nerve conduction study that allowed the neurologist to diagnosis me.
The diagnosis was a relief, but I say this reluctantly. Although I have a diagnosis, there isn’t much you can do to treat Parsonage Turner Syndrome. The doctor told me that it may take years to get back to normal, if that ever even happens. I may have to live with some degree of the symptoms for the rest of my life.
I Quit My Job
After one month of physical therapy in early 2018 and 12 weeks off of work, I returned to work part time for 7 weeks. For the entire 12 weeks that I was off, I didn’t touch a computer. I also didn’t drive a car for that whole time.
The neurologist told me to initially ease back into swimming and lifting weights for a few weeks and push through any discomfort. I did just that for three weeks, but I experienced pins and needles in my right hand after doing body weight exercises. I immediately backed off.
After meeting with my neurologist again in early April, I was released to go back to work full time. Eventually, the same symptoms returned. Practically, I was at the same point where I was the previous year—struggling to get through work every day due to latissimus dorsi weakness on my right side.
I lasted until August 2018 when I finally drew the line and quit my job. I couldn’t bear to torture myself on a daily basis anymore.
Living with Parsonage Turner Syndrome
Today, I continue to have mild weakness in my right latissimus dorsi and my right lower ribs still stick out. I also hear clicking when rolling my right shoulder backwards. My exercise routine is nothing like it used to be, but I do my best to stay active. I still have an ambition to complete an Ironman triathlon one day. My hope is that before I turn 35 I can accomplish this goal.
I wrote this blog post to share my story with you about living with Parsonage Turner Syndrome and Brachial Plexopathy. Like I said, I realize everyone’s situation is different. Some of you will have much worse symptoms than me. After reading some of your comments on my Parsonage Turner Syndrome YouTube video, I was inspired to write this blog post with more detail.
If you have similar symptoms or are already diagnosed with Parsonage Turner Syndrome, please don’t hesitate to introduce yourself below. I find knowing there are other people out there going through a similar situation really helpful.
Thanks for reading and I wish you all the best in your recovery.
12 Responses
Hi Tony – Thanks for sharing your story. I was diagnosed with Parsonage Turner in January of 2019. My onset came shortly after a significant eye surgery which I was required to do body positioning in order to save my vision in my right eye. The surgery was a complete success (thank God), so I view PTS as a small price to pay for the continued gift of sight. But I like you, am very active and regardless of my perspective on PTS find it extremely frustrating to deal with. My onset was quite painful and I only atrophied my rear delt on my right side but my right shoulder w/o question is not what it use to be. Today, I’m in a similar place as you with the clunking of the shoulder. Over activity will trigger numbness in both sides which is what I struggle the most with. I continue to do my PT but all and all its been a very slow process.
Anyway – I just wanted to see if you have found any relief from anything untraditional? Or if you have received any additional medical advise that gave some insight as to a cause and/or relief?
Regards…
Hi Jim, thanks for sharing your story. Happy to hear that you’re optimistically dealing with PTS and that your surgery was successful!
As far as relief, the best thing that worked for me was to minimize or eliminate activities that cause aggravation for some time. Then, when you’re comfortable, ease back into it. As you mentioned, it’s a slow process and the process of easing back into these activities is slow too. Right now, I’m getting back to the gym lifting weights and exercising. Things are going well with mild aggravation. A year and a half ago when I tried to go to the gym and do the same thing, my experience was much less positive.
Hope this small piece of advice helps you. If you come across something that you find helps you, please share it here. All the best!
Hi Tony,
Thank you for sharing your journey. I am going through the process of determining my future after being diagnose with PTD about 2 weeks ago. I am a school counselor with very demanding expectations. My issues started a week after my 2nd COVID Vaccine. That is what they are attributing my disease to and it took me only 3 months till they finally got me into get an EMG. My left arm was going numb and tingling. Then it crossed over to my right arm which I am experiencing extreme pain, burning sensations, and numbness in my right hand. I am unable to complete tasks such as writing and anything that takes force to complete. I am on an extremely high amounts of meds. I am supposed to receive treatments (intravenously) to help with the pain. I am having a hard time getting into the appropriate doctors for treatment (my neuro says I need neuromuscular and they aren’t available till Sept). They are holding off on the treatments till my neuromuscular appt. I have contacted the CDC, VAEC, Moderna, Countermeasures Injury Compensation Program (offers support financially to someone who has an adverse serious reaction to vaccines, Advocates, ect… I am getting the run around. I have just a couple weeks to decide whether or not I can go back to my stressful position. I find that any stress increases my symptoms. I also find that I have no energy after a short while of doing medial tasks at home. I feel useless, purposeless and very overwhelmed. It is good to hear that I am not alone. Any advice you could offer would be great. Thank you so much!
Elizabeth
I have also noticed that stress increases symptoms. I realize you are dependent on your job to earn a living, but I believe anything you can do to minimize your daily stress will help including time off. Thank you for sharing your story Elizabeth.
Hi Elizabeth. I had my 2nd dose of Moderna in June, but last night I woke with severe pain in left arm. All symptoms point to PTS. I know it has been two months, but from what I have read, vaccinations, or poorly administered vaccinations, can cause PTS. It all fits too well. I went to doctor today. No help of course. I will continue to pursue. Wish I could just get the EMG test so I would know, but you just simply can’t get right to that as many have said. Good luck to you. Would love to hear back from you to share more about your experience. Thanks.
Hi Elizabeth. I had my 2nd dose of Moderna in June, but last night I woke with severe pain in left arm. All symptoms point to PTS. I know it has been two months, but from what I have read, vaccinations, or poorly administered vaccinations, can cause PTS. It all fits too well. I went to doctor today. No help of course. I will continue to pursue. Wish I could just get the EMG test so I would know, but you just simply can’t get right to that as many have said. Good luck to you. Would love to hear back from you to share more about your experience. Thanks.
Hi Tony,
My story has a lot of similarities so thank you for sharing. I was diagnosed with PTS after 3.5 years of upper back,scap, and shoulder pain. I was actively seeking medical help, doing PT, easing back into training etc while finishing my engineering degree. I landed my dream job and worked their for three years after graduation when the pain became too much I had to leave. My emg showed a long thoracic mononeuropathy, it took me another year to find a surgeon when I eventually came across Dr Nath who performed a long thoracic decompression procedure at the Texas Inst. of Nerve and Paralysis. I had mild improvement from it but still am in too much pain doing my daily activities. I was a very active healthy and happy athlete untill I was 22 and am 27 now. I didn’t know about my condition for years since it was diagnosed wrong multiple times and it seems like no doctors are aware of the syndrome. I was probably too aggressive rehabbing and training, despite following my doctors advise. I used to do alot of barbell squats, which I think led to scoliosis and a herniated disk at L5, since my upper body was so imbalanced. I notice alot of weakness in my lat and pec, and sorta just feel my arm isnt quite attached to my body. The pain is pretty bad but mentally it has been extremely challenging. It seems that I hurt myself whenever I try to ease back into exercising. I’ve also been out of work for a full year and havnt progressed enough to the point where I can return to work. I will never give up, but it has been so frustrating and exhausting/draining.
Thanks for sharing your story Brian. You’re right that our stories are very similar. It seems like you have the right attitude to never give up. Don’t change that. I’m finding that removing stressors from my life is helping in combination with yoga and meditation. I also recently went to Veronkia in Phoenix and experienced a great amount of relief. I was very skeptical about this, but the work she did on my body really helped.
All the best to you Brian.
I was winning a tennis tournament in June 2021 and fell. During that fall I fractured my radius and ulna. I also had a hematoma on my head but no concussion. Four months after I had tremendous pain still. I have not worked since my fall. Like you, I am smart and quite active and have been reduced to a very sedentary lifestyle. I was blessed to go to Mayo and have my arm rebroken and the radius extended with a pelvic graft. It was there I was diagnosed with PTS. Unfortunately, I cannot do any physical therapy or therapeutic steroids until my fracture heals. I am taking a ton of Lyrica and very drowsy. My affected arm has a cast above my elbow for at least 6 but perhaps 12 weeks. I am hoping to get my life back and return to work and tennis. Thanks for sharing your story! Any suggestions?
So sorry to hear about your fall. It sounds like your on the path to recovery, but just starting to grasp with PTS. This might be a bit off for you, but what has helped me the most is yoga and believe it or not meditation. I think that daily stress flared up my symptoms. Also I visited an Integrative Manual Therapist (much different from traditional physical therapy) and had great relief with this, albeit temporary. Doing that consistently would be miraculous in my opinion… it’s just really expensive.
Had a Moderna booster Dec 11th 2021..One day after shooting pains in teh opposite arm from shot…Saw PCP doctor three days laetr and was told a lot of epople gte a sore arm..This wasn’t right so I called my Neurologist..He called me right back at night and we talked..He said it sure sounds like Parsonage Turner Syndrome and scheduled an office visit.I have had three so far ….I was nerve tested and left arm is fine..Right arm nerve response nerve testing was non responsive…I have strength still and can do most anything..But the pain and the tingling in my right arm, is really annoying and hurts… dead as a door nail when hit by a Neurologists testing hammer…..Neurologist asked for gamagobulin treatments, four days worth..My insurance company stalled…It wasn’t until over a month later and after I filed a complaint with the State Health Insurance Commision that I got approval for the infusions ( four days …about three hours each time)…I just finished last week..Had a fever 101.4 for one day and rashes now…..I saw my Primary Care Physician again today..He said a lot of people get a sore arms from the shot..Got the feeling he didn’t beileve I had Parsonage Turner Syndrome from the Covid Moderna Booster .I know I did…. .I told him It isn’t just a sore arm..I see my Neorologiost next week for further testing ..I had polio same side…
Hey, i’m from Montréal. Had PST in 2003 (was 23 at the time) in the right shoulder and had to deal with a injured sus-épineux. It went back to 90% after 3 years. Has 2 other crisis in 2017 in the right shoulder, endomaging the nerve in my forearm so i could move the first phallange of my thumb and 6 months later another ciris affecting my index. It went back to 80% after 2 years. I’m dealing with another crisis just now in the left shoulder similar to the one in 2003 and i canot move my rotator. Just sendind hope for recovery to all and saying that almost complete recovery is possible with time, efforts with physiotherapy (nothing else worked for me) and trying to stay with a good mood. I’d like also to say that keeping active is helping me most, and swimming when the crisis ended was the best activity for me as an activity to add to physio. Meilleures salutations !