Just need to scream into the void
It’s been over two years and I can’t take the pain anymore. It started as a tourniquet feeling with painful numbness and heaviness. Now it feels like a dozen rubber bands in my shoulders and arms are being stretched to their limit and about to snap. I’m living on Tylenol and can’t be without it.
I went to urgent care for unbearable pain at the direction of my vascular surgeons team. Urgent care said they can’t help me. They haven’t prescribed anything for pain, no referral to PT. MGH wanted me to wait on injections. I’m just stuck.
The cyanosis was originally diagnosed as dysautonomia with no real evidence. Finally got the autonomic testing which was completely normal. Now they finally suspect TOS.
I got a referral to MGH. Was going to see dr. Donahue but my vascular surgeon isn’t sure if it’s arm or central vein issue, so I’m being seen by dr panda in August. If it is venous TOS I will request Donahue for surgery.
Not only am I done with the pain, but also the feeling of isolation. No one, including myself prior to this, can understand what it is to be in constant debilitating pain until you’ve been through it. I try not to complain because I know everyone is tired of hearing about it. But damn.
I don’t know what to do until my appointment. Tylenol helps, can’t take nsaids, and heat makes it 100x worse. I’ve been ordered not to lift anything more than 5 lbs but don’t feel any better. I’m having a hard time getting through the day at work. No one seems to care. I’m just over it.
Just needed to reach out and get this out. Any advice appreciated. Thanks all.