In April 2013 I was diagnosed with Thoracic Outlet Syndrome (TOS). But I didn’t know then what it was they were diagnosing me with.
Several years before… I began seeing an Occupational Therapist in 2004, due to numbness in my hands. The OT believed I had carpal tunnel from my time in college while getting my art degree. It should be noted that I didn’t even know how to knit or crochet at this point. But, come to find out, it wasn’t only the carpal nerve that was the problem. It was all of the nerves in my arms.
The symptoms and pain then worsened. April 2013 was the worst it had ever been. Excruciating pain woke me up one night. I could hardly move. There was pain seizing my neck that was so bad that I found it difficult to walk, talk, or breathe. At 3am I called a friend to drive me to the emergency room. They gave me muscle relaxers and told me to see my doctor.
REFERRED TO SPECIALISTS
From there my primary doctor referred me to a Chiropractor who then referred me to a Physical Therapist. When I first started there my therapist put me through a few tests to see what was causing my pain and where it was. One of the tests he did was he had me raise my arm and tell him when it started to get numb. It was almost immediately. He then told me I have Thoracic Outlet Syndrome.
I was in physical therapy 3-4 days a week, for about 3 months. The exercises and stretches helped alleviate some of my symptoms. They even popped and massaged my back at each visit to try and loosen things up. When I was released I was told to continue them at home. I haven’t been very good about this.
SO WHAT IS THORACIC OUTLET SYNDROME?
Thoracic Outlet Syndrome is an umbrella term for three to four related syndromes that involve compression of the nerves, arteries, and veins in the lower neck and upper chest. When these get compressed it can cause paresthesias (numbness or the pins & needles feeling) in the fingers and hands, coldness in hand and change in hand color due to restricted blood flow, dull and aching pain in the neck, shoulder, and armpit, weakness in the hands and fingers, and swelling. I had, and still have, all of these symptoms. Likely, I have a combination of the related syndromes, as well as Pectoralis Minor Syndrome. This causes tingling in the arm and can affect the neck and shoulder blade, which they spent a lot of time on in therapy sessions.
TOS can be caused by repetitive movements over time, which could explain why I have it. In college I was often using repetitive motions for my field of study. Several years later I learned how to knit and crochet, which definitely requires repetitive movement. I also learned that Thoracic Outlet Syndrome typically affects just one side. The overachiever that I am, I am affected on both sides.
WHAT THORACIC OUTLET SYNDROME LOOKS LIKE FOR ME
This morning I woke up in pain from the paresthesia in my hands. Often this feeling extends up to my elbow also. Today this sensation lasted approximately 4 hours before it finally began to subside a little. Honestly, I’m not sure that the tingling ever completely goes away. It has, unfortunately, just become a part of my day. I have to work around it and work with it to get through the day.
Many nights I experience difficulty sleeping because I wake up in pain, caused by the tingling in my arms and hands. I have learned that there are certain sleeping positions that aggravate it and some that help ease it. Generally, I am a side sleeper, and I have to place my top arm over a pillow so that it is level. Any sagging and pulling will compress the nerves further. This also means that I can’t snuggle my kids with them laying on my arm. For most people their arms would fall asleep at some point while doing this. This feeling is almost immediate for me.
Carrying heavy weights, and even carrying my toddler, can cause my symptoms to flare up. Stress can make it worse, as it tightens the muscles in my chest around the thoracic outlet.
Straightening and curling my hair, even washing my hair, or doing any simple activity, like changing a light bulb, that requires my arms to be held up for any length of time causes me numbness and pain.
Headaches, neck tightness, cold hands, aching, swelling, and weak hands and fingers are all symptoms that I have regularly. As you can imagine, this can make daily tasks frustrating and painful at times.
HOW I COPE
As I said in the previous section, I have learned new ways to sleep somewhat comfortably. When I’m knitting and crocheting I have to take frequent breaks and do something else or stretch. I try to only carry a few grocery bags at a time, rather than trying to gather them all up at once. Slowly, I am getting back into doing some of the stretches that my therapist taught me. They are done in the morning and the evening and some in between, especially if I’ve been doing a lot of repetitive movement. I wear my hair naturally as much as I can stand it and take breaks when I do choose to straighten or curl it. This means it takes me at least twice as long as it normally would. Ibuprofen, heating pads, and ice packs are also dear friends.
Having Thoracic Outlet Syndrome as an artist and crafter can be debilitating. It’s frustrating to want to do something and either not having the strength to do it or to be in so much pain and discomfort that you physically can’t do it. There are surgeries available, but I hear they can be risky and they are not easy to recover from. For instance, one of the common surgeries involves the removal of the first rib. Sounds fun, right?
So I’ve just learned things I can do to continue with my life as best as I can. Some days are definitely more of a struggle than others. It’s not always a physical struggle. Sometimes it is also an emotional one, because it’s hard to be physically limited, especially when it’s getting in the way of doing something you love.
Thoracic Outlet Syndrome is listed as a rare disease with the National Institutes of Health, as it affects less that 200,000 people of the U.S. population. It could be that more have it than are diagnosed. As I said, I was initially told it was carpal tunnel. But, even though this is considered a rare condition, if you are one of the few who have it, you are not alone. I’m suffering and trying to cope right along with you.
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