Patient Comments: Thoracic Outlet Syndrome - Symptoms

What were the symptoms of your thoracic outlet syndrome?

Comment from: Victim of rear-endin, 45-54 Female (Patient) Published: April 16

I truly think the worst thing with TOS is that most doctors act like you are out of your mind. I also have all of the listed symptoms, plus leg pain with numbness, and swelling over and under the collarbone area. I do get very depressed from the fact that the neurologist who confirmed my TOS doesn't treat it. My primary care doctor said I need antidepressants and must accept that medicine cannot fix me. I've been suffering for two years after being rear-ended at a stop light. All this – because someone wasn't paying attention while driving.

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Comment from: TOS victim, 25-34 Female (Patient) Published: February 22

I was diagnosed 7 years ago with TOS and also secondary Raynaud's. I have really bad 'attacks' every few months which leave my left arm unmovable and in some instances my left leg too, which I have been told 1 has nothing to do with the other, this can last minutes to days. I have very bad pains which I have to have ECG's every time because the experience replicates a heart attack. I am still learning about the pains and symptoms (you would think after 7 years I'd be used to it) I have pains on a daily basis which affects my arm, hand, chest, shoulder, neck, ribs, numbness in hand, arm, mouth and tongue. I rate from my days from 1-10, 10 being really bad, a good day is usually between 3-6, bad day can range from and 8-12. Lately I have been getting electric shock sensations in my arm, leg, neck and chest also a tinny taste in my mouth when these 'attacks' happen. Just wondering if anyone could shed any light on this and tell me I'm not mad lol.

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Comment from: Dale, 55-64 Female (Patient) Published: November 16

I suffer from this condition, just learning now exactly what it is. I'm in physical therapy due to neck and shoulder pain and now realizing that it is caused by this condition. The massage therapist relaxes the trigger points, but all my muscles keep tensing up again; not sure what to do about that...the exercises sometimes aggravate the condition; what I'm learning is, if there is pain, to ease up on what I'm doing.

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Comment from: junkmans daughter, 35-44 Female (Patient) Published: February 24

I have Psoriatic Arthritis and have had droopy shoulders my entire life. My mom would tell me to sit up straight a lot and when I took riding lessons in college I was constantly yelled at to correct my posture. At 42 I discovered that psoriatic arthritis is probably the cause of my shoulder droop due to connective tissue issues. I have had physical pain as long as I can remember including things like uveitis, pueritis, sprains, tendonitis etc. All have been manageable with sunglasses, rest splints, altering work days and rest time. I now believe I have thoracic Outlet syndrome and my left arm/hand are involved. I have been told about the severity of the muscle tension in my shoulders by my masseuse, and have found some relief from the severe hand pain with splints, but it is almost unbearable at times. Even joint deformities in my toes and heel that were operated on never felt like this. I am now without health insurance as I had to quit a stressful job to try and manage the arthritis, and this is the worst ever for me. Really hating arthritis today.

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Comment from: 35-44 Female (Patient) Published: August 28

I have been dealing with thoracic outlet syndrome pain since last year. I have flare ups frequently. I have been to physical therapy twice, have had MRIs (minimal bulging disc at C6C7), and EMGs (negative). I have also had so many pain shots and steroid shots, I feel like a pin cushion. Just in the past month, I have had three flare ups, the last one being just two days ago. With these, I am unable to move my neck, and my right arm. There is an unbearable pain. It goes from my neck, to my shoulder, down my arm and into my shoulder blade. I have begged my doctor to help fix this. I can't live like this. I am going to be a first time grandma soon. I want to be able to hold my grandchild, symptom free. My doctors, both family doctor, and orthopedic doctor, do not know what to do for me, or who to send me to for help. It is so frustrating. I don't think anyone has any idea how bad the pain can get. With every motion my arm or neck makes, the pain starts.

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Comment from: KarenW, 45-54 Female (Patient) Published: September 17

I was diagnosed with thoracic outlet syndrome 12 years ago and after many years of excruciating pain, I began to notice patterns that increased the pain. Minimizing my salt intake decreased the pain I was having for weeks at a time to just a couple of days in a month's time, most notably when I retain water. Cutting out processed foods like Luncheon meats, cheese, and other high in salt foods made all the difference.

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Thoracic Outlet Syndrome - Treatment Question: What kinds of treatment or therapy have you received for thoracic outlet syndrome?
Thoracic Outlet Syndrome - Diagnostic Tests Question: What tests were used to diagnose your thoracic outlet syndrome?
Thoracic Outlet Syndrome - Causes Question: What caused your thoracic outlet syndrome?

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