Dealing with Thoracic Outlet Syndrome/stress in another country.
May 14, 2013 12:09 AM   Subscribe

I was recently diagnosed with thoracic outlet syndrome and I am having a very difficult time dealing with it. I am only 27. Basically tingling in my hands and a tension in my shoulders that does not go away. My blood gets rather restricted and my shoulders tire easily when they are raised above my head, which clued in the doctor to the TOS. At first the doctor thought it might just be a pinched nerve or a hernia but it is occurring on both sides of my body particularly on the palm and in the shoulders. I am living in Japan right now and one of my best friends here just went home to Ireland so I have no one really close to talk to, and thus am dealing with a bunch of stress as well. I am also taking days off of work since the fact that the condition has been steadily getting worse since February is really bringing down my spirits.

I was also advised not to do many of the things that I love and make me happy, such as playing piano and exercising. I have noticed that especially typing and playing piano makes my condition worse. So I think that stress from avoiding the things I love (piano, computer games, running) may play a part in my condition as well, as I always have tension throughout the body and often clench my jaw. I have a difficult time typing and I am actually using dictation software right now.I just went to the doctor yet again and was prescribed Cymbalta for my symptoms. Not sure if it is working yet.

Besides the medication I am also sending a personal trainer who is giving me some stretches to work on like a chest stretch, neck and shoulder stretch. I am also working on strengthening my back.

I would love for some advice on how to deal with thoracic outlet syndrome and also if there's anyone with the condition/has had the condition I would love to hear from them. I know no one who has had this, so the feeling that I am alone really bums me out. Thanks a lot!

(I am currently looking for a therapist, but pickings are slim in Japan compared to my home country.)
posted by Kamelot123 to Health & Fitness (7 answers total) 1 user marked this as a favorite
 
I just went to the doctor yet again and was prescribed Cymbalta for my symptoms. Not sure if it is working yet.

I am sorry I can't provide you with any information on thoracic outlet syndrome except that if you Google "thoracic outlet syndrome support" there appear to be a good number of people with this condition and a number of online support groups you could look into.

What I wanted to let you know is that it will take 1 - 2 weeks for the Cymbalta to kick in and 6 - 8 weeks for it to reach a steady theraputic level. Virtually all antidepressants of this type work this way.

It sounds like coming to terms with this will be a big transition and I wish you good luck and support in coming to terms with it.
posted by DarlingBri at 12:18 AM on May 14, 2013


So I have thoracic outlet syndrome. It sucks, and it's hard to deal with at first. But it's very manageable, and with time you can deal with it. It really comes from muscle tension and muscle strength imbalances, which you can absolutely address.

Here's my advice based on what worked for me. The stretching and strengthening exercises are the most important thing. They are what gets blood flowing to your arms again, and you need that to recover. Do them as much as you can. 30 minutes a day minimum, 2-3 hours a day spread throughout the day is better.

Upper body things that make it worse, like computer use and piano playing, need to stop for now. Be ruthless about this. It's very hard to not do things you love, but it well help so much if you can stop. Use the dictation software, even though it's very frustrating at first. Try to relax while dictating, getting angry and yelling at the computer doesn't work. If you do type or play, you need to have an absolute zero tolerance for flare ups. If you feel any pain, tingling, or numbness you stop playing/typing for a minimum of one hour. Also, while typing or playing you must have perfect posture (spine straight, chest up, chin in) and take a 5-10 minute break every half hour.

Anything you can do to reduce your stress levels and tension will help. I found exercise that wasn't hand intensive was great. I don't know why your doctor said no running, I found running a huge help as long as I focused on good posture, no hunched shoulders. Can you go to group exercise classes? I also found yoga helpful. Therapy could help, as can talking to friends or getting support. Can you use Skype with friends back home? Massage can help both with the tight muscles and the stress. What else relaxes you? You may have to get creative to find ways to relax that don't stress your upper body.

Some people do well with SSRIs, others find some meds make the symptoms worse. You can try a different drug if it's not helping or getting worse.

How long it takes to improve really varies. It could be weeks or it could be months. It's hard not to know, and it's a huge mind fuck because the physical limitations are frustrating, then the frustration makes you more tense, and the tension makes your physical symptoms worse. Breaking out of that stress/tension cycle is going to be key to kicking this in the long run. But it's hard.

Good luck, and you can do this.
posted by medusa at 12:58 AM on May 14, 2013 [5 favorites]


A couple more quick suggestions: some people find that cutting out alcohol and caffeine helps. When you're having tingling/pain in your hands, you can try contrast baths: switch your hands/arms between a bowl of warm water and a bowl of ice water every minute for 10 minutes.
posted by medusa at 1:04 AM on May 14, 2013


I have Thoracic Outlet Syndrome. It started with my shoulder pain, then my left pinky going numb, and over time, my hands began to tingle more and more, especially as I raised my arms above my head. I've had so many different diagnoses: guyon canal syndrome, cubital tunnel syndrome, pinched nerve in neck. I've seen a chiropractor, a few neurologists, gotten MRIs, multiple nerve studies and nerve meds, and an osteopath. No one could agree on a diagnosis, but finally, a few months in, I notice paling in my chest and arms, and my DO decided to let me continue with TOS treatment.

The condition, while not gone, has improved tremendously. I went to a few different physical therapists until I finally found one that worked for me, and the shoulder pain all but went away. The tingling is still there, as is the overall tightness, but it is much more manageable now.

My therapist focused on gentle pectoral and scalene stretches for about 30 minutes, saying that in her experience, TOS responds better to gentle massage and stressing rather than the agressive stretching that a lot of PTs work with. After the stretching, the next 30 minutes were dedicated to postural training and strengthening of the shoulder girdle. Main focus was on the posterior deltoid and the rhomboids: Lat pull downs, horizontal rows, rotator cuff exercises, etc. These were all done with light weights or resistance bands. Before I left for the day, she taped up my scapula to retract it, and it did wonders for relief.

She gave me self scalene, pec and trap stretches for me to do at home, and I really had to do these a lot to start feeling the effects.

Don't sleep on your stomach, but on your side, preferably with your affected side away from the bed. (I asked this question about it)

I no longer see my therapist, but I've joined the gym again and have slowly gone back to doing some of the things that may have caused this in the first place.

I will MeMail you with more specific exercises and helpful resources when I get a chance later tonight, but feel free to message me if you need to talk or have questions. This condition sucks, and the past year was terrible for me, so I know what you're going through.

Good luck, you'll be fine.
posted by alligatorman at 4:16 AM on May 14, 2013 [2 favorites]


I don't have TOS but came in to recommend a novel, which I will do below, but reading the above made me curious -- alligatorman and medusa, have you tried Alexander technique? It seems as though it could help at least in part, since it focuses on teaching your body to stay in alignment (i.e. muscle balance) in a very gentle method. I call it 'non-invasive chiropractics' because there is no jerking or cracking involved at all. I have done Alexander classes at various times in my life, most recently to help with a pinched nerve in my neck.

Just a thought but I would be interested to know if you've ruled it out.

So anyway, Kamelot123, I don't know if you would find this helpful -- I often use novels as adjunct therapy and one that seems like it might be of interest to you is American Fuji, by Sara Backer -- it's based on her experiences living in Japan and the protagonist is an American woman with a chronic illness that she finds isolating. It is a really good book -- not a work of genius but very thoughtful about loss of all kinds and what we put ourselves through mentally to process loss (loss of health, loss of job, loss of a loved one, etc) . And the thing is that it's also quite funny in places and is utterly engaging.

I'm not at a computer with which I can link to it on amazon but let me know if you'd like a link and I'll post it when I get to the office later.

Take good care.
posted by janey47 at 6:54 AM on May 14, 2013 [1 favorite]


I speak from experience. At the worst, I was in so much pain I could not tie my own shoes and my hands would go numb combing my hair. A few months of focused physical therapy, lifestyle changes, a visit to my dentist about the jaw clenching, and serious life examination put me back to normal functioning, but it wasn't easy.

What medusa says is exactly it. You must stop doing any activity that exacerbates your problem--completely STOP, ASAP. It's not forever, but you have to let your body heal. I also play music and it was horrible to force myself to pack up my instrument and put it in the closet, but it's what I had to do to get better. I also stopped riding my bike, and reduced typing to the minimum necessary to do my job and used voice recognition for the rest. Gaming is completely out. You can go back to your fun activities later, now you need to rest and build strength.

Alligatorman's suggestions are what I did to get better. Pectoral, scalene, and rhomboid stretching and strengthening. Learn what the muscles are and what they do so you can improve your posture.

And give a little thought to how you can rearrange your life in the future to allow you to enjoy your activities without more problems in the future. I still play music and write code and ride my bike, but I can't do them all in the same day, and especially not if I've been slack about my lifting and stretching. YMMV, but be honest with yourself about the kind of life changes you might need to ensure you'll have a long-term recovery.
posted by epanalepsis at 9:13 AM on May 14, 2013


Active-Isolated stretching is the best way to really loosen up those muscles&fascia in a lasting way in my experience. It's ideal if you can go to a professional who can teach it to you, but doing it from a book or video might be good enough.

Basically this chest stretch. I recommend this book.

Strengthening your back is also a great idea.
posted by callmejay at 5:05 PM on May 14, 2013


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