But you don’t look unwell… living with pain

invisisible-illness-catYou see people in pain every day and sometimes they can be visible and sometimes not. I am in the “not” section. I first started becoming unwell in around about 2007. I have in the past 7 years found that I have a number of conditions, but at the end of the day you really have to think to yourself…….. someone is a lot lot worse off than you! I thought I would talk about my pains of the day lol, thoracic outlet syndrome.

What happened?

In 2007, I was at Uni and to get to my flat I took the shortcut over the grass and ended on my backside. My first thought was fuccccccccccck that was embarrassing and then oh my god what the hell is that pain!! About 1 hour later, I was in my lecture and I thought “jesus my left arm is feeling so so heavy” and I looked down and my arm was purple. I just thought to myself what the hell have I done? I couldn’t lift my arm and I couldnt move my arm. Now I booked an appointment with the Uni doctor and he said that I had whiplash. So I thought it was whiplash for just over 1 year.

Year 2 of Uni, I was walking back from the supermarket with my shopping bags and I was getting a shooting pain down from my neck, along my chest, my arm was going heavy (you know the sensation if youve got pins and needles in your leg and you cant move it!), and then my head was leaning onto my left shoulder. I couldnt move my head and I was so scared. At this point, I just looked like an absolute state, the pain was then going down my back as well. I got home and just cried, I thought what the hell has happened!!

Coming back from Uni I was working on the checkouts and again my arm would go dead, and the best thing I could do was to put it in a sleeve/bandage thing, as I couldn’t physically lift up my arm. My arm kept going purple and I again was just scared. My breathing kept going and just… hated it!


I went to my doctors and they had no idea what was wrong with me and sent me off to see a specialist as they were adamant it was not whiplash. I saw 2 consultants who again were puzzled and finally saw this one guy in BUPA (private healthcare), who stated that he believed that I had thoracic outlet syndrome. He did some tests on me:

– raise my left arm at a 90 degree angle out & left from my hip – cannot do

– raise my left arm up at a 45 degree angle out & left from my hip – cannot do

He therefore asked me to raise my arm up and out from my hip, to test my pulse, he placed one of those things they put on mums to be bellies and…….. within 10 seconds or less, there was absolutely no pulse going to my hand.

Normally, they would say that they would give you physio, but he said that I was such a bad case that I was booked in for surgery 3 weeks later.

What is it?

Thoracic Outlet Syndrome is:

  • Thoracic outlet syndrome is a condition whereby symptoms are produced from compression of nerves or blood vessels, or both, because of an inadequate passageway through an area (thoracic outlet) between the base of the neck and the armpit. – taken from Medicine Net

Or in my language, an absolute pain in the backside!12121212I found this image online and I was like yay someone has actually described the pain I go through. Since the operation, I was able to bring my arm up, rotate my neck to the right. But since then I have had another operation and yet again EVERY DAY I am in pain. I have been to a&e a few times, as people thought one day I was having a stroke, as my whole left side goes numb, my face drooped, my chest goes mega tight… just so scary. 

I think the biggest thing I have had to overcome, when I first had my operation was the scar tissue that was left. For nearly 5 months after, I wore a scarf on my neck, as people were staring at my scars, my first night out, I went home mega early as I had no confidence, and I still do not like other people touching them (although someone at work came up to me the other day and just touched them, I was mortified!).

 34354Haha ignore the face this was a few days after my operation. My operation consisted of the team removing muscle from both sides of my neck, to allow blood to flow to my arms. The weirdest sensation ever was waking up, and I felt that if I moved my neck it would fall off. Still to this day, this area of my neck is numb to touch!

2323232This is a few months after my operation, my scars turned into keloid scars. I used a lot of bio oil, to remove some of the scaring. Nearly 5 years later, they are still very much like this, although this photo does not do this any justification.

UntitledThese are my scars today, they have done down a lot but people unfortunately still have a look. I really dont mind if people ask me about them and not just stare!!

What’s going on now?

Well I still have my bad days, I cannot lay on my left side, I have no real strength in my left arm any more, my arm still goes dead but not purple any more! yay! I often find myself getting out of breath easily, as the pain can be unbearable and the muscles spasm all around my neck, shoulder and my ribs!

I cant unfortunately wear necklaces I have noticed now, the one above in the photo made me itch for many hours after having it on.

As I said I have been to A&E a few times and each time I have had my own Doctor as I seem to be a mystery, but each time they say I am a bad case of it. They state that they cannot operate again due to scar tissue

What I find difficult to do?

There’s quite a few things I find difficult to do, but if I keep trying them then I will get stronger…haha hopefully

– using my left arm to dry my hair with a hair dryer

– changing my bed sheets (I have to stop  half way through)

– hanging things up high, as the blood goes quickly from my arm lol

– still raising my arm up

– lifting heavy items

– pulling heavy items

So there you have it 🙂 that’s me 🙂 I speak to others online about it and it fascinates me how others have operations under their arm pits, or the same as me. I seem to be one of the few to have it on both sides…. lol! woohoo Sometimes you need to have your first rib removed, which can be very strange to read about haha, but that’s what makes us all unique.

As I said, its just an condition that I have to deal with, along with my fibromyaliga and hypermobility. Just adding it to the list haha!


We all have something wrong with us, but its just a part of our lives. No one is worse than others, as we all feel pain differently, we all do things differently. But if we are all aware of someone else’s pain, that’s what makes it better for that someone.


10 thoughts on “But you don’t look unwell… living with pain

  1. I had no idea about this condition and I think you are so brave for blogging about it to raise awareness. I think you have a great view in that there are always people worse off. I know what you mean about living with conditions I suffer with B12 deficiency – pernicious anaemia and get chronic fatigue & chest pains, I have to be injected every 12 weeks for the rest of my life. But you just get on with it. For the record I have never noticed your scars and don’t be self conscious as they are part of who you are. Although I would not have been happy if someone just came up and touched me at work haha – boundaries! Great blog XOXO


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