Thoracic Outlet Syndrome

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#Migraine #JointHypermobilitySyndrome #ThoracicOutletSyndrome #PosturalOrthostaticTachycardiaSyndrome

I have been diagnosed with POTS, hypermobility, CRPS, thoracic outlet syndrome and (a few other things that may or may not be related).

My new neurologist diagnosed me with migraines. I believe that diagnosis fits better than occipital neuralgia, which is what previous neurologist diagnosed me as having.

My new neurologist prescribed Emgality because I have been having 2-3 moderate to severely painful migraines per week. I just took my first double dose today. I was wondering if anyone here has taken it, what side effects (if any) you experienced, and did it work for you?

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Need advice - How do you force yourself to exercise even when in pain?

Hi Everyone! So I have chronic pain in my hands, chest, and arms from Thoracic Outlet Syndrome. My doctors have always told me that I need to exercise and keep my muscles in my arms, shoulders, core, and chest active and strong...but it's so hard. I have such a hard time exercising through the pain, and even just getting up the motivation to try. What do you do? How do you do it if you've figured out a mindset that works?

#Askingforhelp #Exercise #Motivation

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I'm new here!

Hi, my name is beckthewreck. I'm here because I have thoracic outlet syndrome and a few other conditions and I'm looking for community.

#MightyTogether

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So tired, in so much pain #Painsomnia #ChronicPain #ThoracicOutletSyndrome

Things have been better the last month but this past week has been hell. I haven’t been able to sleep the past three nights because of terrible nerve pain. It doesn’t matter how many pain meds I take or what pain relief methods I use, nothing works. I hate this. I know when you have chronic pain this is just a part of life, but this is just difficult to get through. Especially with no sleep. I feel like the only way I get better is when I can rest and sleep. Just wanted to share because I don’t have many people who understand. 😔

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Newly diagnosed

#ThoracicOutletSyndrome

Hey everyone! i was recently diagnosed with venous thoracic outlet syndrome after struggling with a horrible DVT that has not gone away as well as constant nerve pain, numbess in my face, arm, and hand, and swelling. It has been so scary for me. I will most likely have to get surgery because it is so bad. I also have ehlers danlos syndrome and all of the comorbidities that come with it. I was wondering, for anyone who has both, is it possible that this puts you at risk for more vascular compression disorders? I have so many unexplained health issues and I have been researching other vascular compression disorders and I am really wondering if this is something I should bring up to my vascular doctor (things like MALS and SMAS). What are your thoughts? Do you have more than one? #EhlersDanlosSyndrome #EhlersDanlosSociety #MedianArcuateLigamentSyndrome #smas #MALS #vasculardisorders

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I no longer feel safe on social media

I am getting to the point where the longer I am on social media apps like instagram, facebook, and tik tok especially, the more unsafe I feel. Every single day I am harassed in the comments. I constantly see my fellow disabled peers, friends, and loved ones being harassed by people too. I have seen people post threats, I have seen subreddit accounts dedicated to accusing disabled people of faking their illnessess. I have seen people's mental health, physical health, and safety in danger because of this, whether a danger to themselves or others. Honestly, this is one of the only online spaces I feel safe. I should not have to hide my experience being disabled, I should be allowed to raise awareness and be honest, but I do not feel safe. I have noticed that the more followers I get (and I am not even like instagram or tik tok famous AT ALL), the more hate I get. I get hate by doctors, I have medical trauma, I get hate by strangers in public, I do not need to get to the point where I do not feel safe online either. Being disabled is so scary, I am scared of my own body and those around me. There is a reason why we are so lonely and isolated beyond just being housebound or sick, it is because so many of us do not feel safe. I have developed agoraphobia because of this. It's unacceptable. And i know i know people will say "do not let it get to you" but it wears on you!!! It builds up and it won't stop!! Don't let it get to me? Do not let people do this! Why is it our responsibility to not let this violence and harassment get to us when it should be their responsibility to unlearn their horrific and abhorrent amount of ableism? Why is the blame always twisted onto us? I am done. I am fed up. I cannot stop my disabilities, and the sicker I get, the more I cannot hide it and the less my illnesses become invisible. Invisible or not, it is unconscionable to be treated this way to the point where I literally fear leaving the house or going online. I've had it.#EhlersDanlos #POTS #ThoracicOutletSyndrome #Ableism #ChronicIllness #InvisibleIllness #visibleillness #Neuropathy

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