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Shoulder/arm pain related to Parsonage Turner Syndrome
I really need some help/advice. I have been having right shoulder pain which doctors told me for years was bursitis. The pain got worse so I went to a neurologist because i honestly thought the pain was too bad to be only bursitis. Also, the pain radiated past the elbow and to my wrist. Nerve testing turned out normal. I never had any imaging done.
Fast forward to Oct. I got a flu shot 22Oct in my left arm. About a week later I had a bursitis flare (right shoulder) that lasted about 3 days. 2 days later the pain started again, but it was so severe I literally had no range of motion due to pain. It was sharp, stabbing, radiating pain in the front of my shoulder/armpit and tip of my shoulder. The pain was constant and severe but I would still have these episodes where it got even more severe and I bawled my eyes out. Ibuprofen always worked to relieve my bursitis but even the ibuprofen 800, muscle relaxer, and tylenol I was taking didn't touch the pain. Urgent care x rayed my shoulder - found a huge calcium deposit. Went to the ortho, gave me a coristone injection that did absolutely nothing. Severe pain continued. Then I woke up and couldn't hardly move my arm. This wasn't due to pain, it was as if my arm just stopped working. It had no strength, but it was only my upper arm, not forearm. Sleeping was impossible as pressure on my shoulder blade caused pain, too. A week later I got an MRI to prepare for arthroscopic shoulder surgery to remove the calcium. MRI showed several calcium deposits and mild tears. The surgeon said I would feel instantly better after surgery to remove the calcium. I was looking forward to no more pain as by this point it had been over a month.Oddly enough, About 3 days before surgery, I finally got my range of motion and strength back and little pain.
Surgery to remove calcium and decompression went fine, but a few days later, I started to feel pain in the front of my shoulder from armpit/chest to clavicle - pretty much same pain as before. Then I felt almost like a popping - like a tendon or something popping out of place. It was so painful and occurred during minor movements and about 10x per day.
It's 5 weeks after the surgery. I still have very little range of motion but not because of pain. My PT can move my arm much further in all directions than I can. After my first PT visit though, I had an episode of severe pain. I cannot even explain the level of severity. It almost made me go crazy. It lasted 2.5 hrs. It started in my armpit/chest/shoulder and radiated to my elbow/funny bone then to my forearm/wrist. It starts out small then gradually radiates and causes the most severe, intense pain. Ever since, I've been having at least 1 episode a day. It is debilitating. The PA keeps telling me some people experience pain longer than others, but I don't think this is surgical pain at all. Aside from the episodes, I do still have more dull pain in the same areas - it just seems to constantly flare up. I am now on gabapentin, meloxicam, and vicodin.
I've researched some things and found that Parsonage Turner syndrome sounds very much like what I am experiencing. I have also found info on pancoast tumors which also cause symptoms as mine.
How can I find someone who can help me rule out or diagnose these? I don't want to keep seeing different specialists for every little thing. Where do I start? I am desperate for help as I do not have good quality of life anymore. The pain has been debilitating.
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@nychole3080 Welcome and I am so sorry for the pain you are experiencing—It sounds excruciating. I hope some of the people on our forums can offer suggestions that might help.
For “us” to help you it would be good to provide a little bit more information:
(1) What area of the country do you live in (city/region would be even better);
(2) What kind of medical insurance do you have (Medicare/Medicaid/private insurance/none);
(3) What specialist(s) have you seen (orthopedist, neurologist, physical therapist, alternative options, other, etc);
(4) What medications have you tried, and which ones provide/d any relief;
(5) What, if any, other kinds of alternative medications/treatments/whatever have you tried (Like acupuncture, massage, THC, ointments, Heat/cold etc)?
(6) Do you have numbness in your arm/hand all the time or does it come and go? Jus in one hand or both
LIt sounds to me like you have some sort of nerve damage, but it’s hard to tell.
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2 ReactionsHi. Thank you for responding. To answer your questions:
I live in the Raleigh/Durham area in NC and have private insurance.
I saw a neurologist in August of 2017. He did the nerve testing on both arms and legs which were normal. I've seen the orthopedic surgeon who performed my surgery in Dec 2018 for calcific bursitis. I am currently seeing a PT to restore strength/range of motion post surgery, but he has given notes and feedback to my doctor that what he's observed is not typical of someone who had the surgery I did.
Medications:
Ibuprofen 800mg - very minor if any effect on pain
Naproxen - no effect
Otc tylenol - no effect
Skelaxin - no effect
Norco - most helpful for pain relief but takes long to work, lasts only a few hrs, and doesn't fully eliminate pain
Hot showers work the best during an attack/episode, but pain returns afterward. Ice actually seems to make it more painful. Fully laying my arm on a surface and squatting to move it away from my body feels better as well. I've tried biofreeze, essential oils like wintergreen and peppermint. My PT would like to start TENS soon. Today, he tried massage which felt better. When he was moving my arm for passive exercises, my hand was shaking and I got pretty strong muscle spasms in my triceps.
I don't have any numbness. I do get some tingling in my hands but very infrequently. I mostly have pain.
My PT thinks I have nerve problems as well, but I don't understand the sudden cause or why it's so constant and excruciating. I dread going back to work on Monday.
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1 ReactionOh.. and my ortho did put me on gabapentin. Today is my 5th day of that. I know it can take a couple weeks to work, but so far no effect.
Has anyone looked at your cervical spine? You maybe having referred pain from degenerative joint disease, decreased joint mobility due to shoulder issue, etc. Either way, the neck needs to be ruled out as a source of the problem. The neck and shoulder are intimately related. The other area to rule out is thoracic outlet, which is where nerves can also be irritated and cause radiating symptoms into the arm and hand. These differential diagnoses can be made by a well versed PT. Good Luck!
Thanks.. good idea. I guess I'm having a hard time because I had surgery a month ago so doctors think it's from the procedure even though the type of surgery I had doesn't require this type of recovery nor does it cause these symptoms. A neurologist I spoke to today won't see me and said to talk to my surgeon. My surgeon keeps telling me to wait 6 weeks although I'm in agonizing pain that has only gotten worse. I'm worried serious damage is being done during these daily attacks. I also realized today that the dose they put me on for gabapentin is a joke (300mg/day) and nowhere near the therapeutic dose for neuralgia.
@nychole3080 Your pain sounds excruciating. I have nothing to add except concern and sympathy. It seems as if most avenues have been explored, but obviously there is something that is yet to be considered. With that much pain, I know you won't give up searching for answers. I hope you find those answers soon.
JK
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1 ReactionHello @nychole3080 - You mentioned Parsonage Turner Syndrome (PTS), I have PTS and your symptoms sound very familiar to me. The pain through the elbow into the wrist especially. You might consider looking on the Brain & Nervous System Group - there is a thread there for PTS. I'm 9 months into this... have found the gabapentin helpful. I'm curious how much your taking and whether it's around the clock? When I first started taking it they had me only take it at night - then during the day I would be in excruciating pain. FINALLY I started taking all day and the overall pain is lessened. Please go read that other page if you haven't already. I will go there and make a post to your name to help you find it...