Arm pain worse when tilting head downwards… Have I got TOS?
 

Hello,

I’ve been looking through this super forum for a long time now.

I’ll try to keep this as short as possible… Basically I’ve had for at least three years now pain in my arms, chest, shoulder blades, neck front and back (and some head/facial pain too). This is on both sides of my body.

It has made me disabled, I can’t pick things up, push or pull things or lift my arms up without pain. Rolling shoulders forward or back hurts too.

The pain is particularly bad though when I tilt my head downwards in combination with arm movement. For example, to look down and pick something up off the floor. Even looking down without arm movement triggers pain. This means I have to keep my head In neutral position, e.g. central, and slightly retracted back all the time.

It has been a nightmare to get a diagnosis. I have been told I have functional neurological disorder.

The only way to ease the pain is by doing neck stretches, e.g. tilting head upwards, Ear to shoulder, and head rotations. And shoulder shrugs have helped.

tests I have had are as follows: chest x-ray, chest MRI, neck MRI, brachial plexus MRI, chest ultrasound, brain MRI, two shoulder x-rays, nerve conduction test. Nothing significant found.

I haven’t had any accidents. Worked at a computer for 10 years previous and slept on stomach with head turned left due to abdominal pain (endometriosis).

What I would like to know is, is this similar to your symptoms? And are they made worse when you tilt your head downwards? I hear a lot about TOS causing arm pain but I want to know if head position affects it too.

I would also like to know if there are any further scans I could have that could help diagnosis?

Thanks for reading :-)

Hannah

Hello,
Have you explored our Trigger point sticky thread?
Trigger point information {TrPs} for short

Tests & scans are good to rule out obvious issues, but expert "hands on" by skilled Dr, PT or DC really can pin point most muscle, spasms, tension problems..

Have you had any really good PT or DC evaluation?

Stretching a spasmed or tight strained muscle that may have trigger points will not work..
The trigger points need to be resolved first.

Muscle spasms might be raising your top rib, so Rib mobilization & treating the spasms needs to be looked into.

Head forward/shoulder forward posture? that can close down the area where blood & nerves run through.

Try our search tool with keywords, symptoms etc.

My symptoms are definitely worse when I look down and attempt to use my arm in anyway. The back of my neck goes goes numb around the C5-C6 area. It has become worse to the point of disability. I do however have a EMG that suggests nTOS and now a MR Neurogram that shows subclavian vein compression. My neurosurgeon wants me to have a diagnostic block at C5-C6 level to see if that improves any of these symptoms.
Ive had every injections (and imaging) known to man, PT/OT, chiropractic, etc. This is getting worse. I suggest having your neck checked out and/or seek out a TOS specialist if you already have one, get 2nd opinion.

Diagnosed with TOS
 

Diagnosed with Thoracic Outlet Syndrome in 2018 and had my cervical rib removed in 2021. Don’t think you have it since I never found movement or lack thereof to increase or decrease the pain significantly. Since the rib removal, however, if I lay on that side I get pins and needles and an increase in pain that wakes me up at night.

Had to stop using my arm completely, prior to the surgery due to the excruciating pain. Not using it didn’t make the pain go away, it just helped me to deal with it better. Every time I would try to do something when the sharp pain would come, it would cause me to involuntarily suck in breath, followed by endless tears and prayers for mercy. Truly torturous by any measure. Think you’d be begging for surgery if you had it.