Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 06-05-2013, 10:03 PM #1
arlsandstrom arlsandstrom is offline
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arlsandstrom arlsandstrom is offline
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Default lets play a game- list of how TOS makes you sad.

I don't post very often, so hi everyone!

Bad day today. Had an amazing couple of weeks with no meds, no heat pack, and few grumpy outbursts. That was a month ago now. Then I did too much travelling carrying heavy bags and fell over in the hotel room when the shower rail fell off while I was leaning on it. Sometimes it's one thing that holds you back for ages.

I am writing because I am really struggling with this mentally. I am doing all the things I can to work on the physicality of tense muscles. But this is ongoing due to my extra rib. No end point, but it isn't bad enough all the time to have surgery to remove them. Meditating trying to stay calm and taking the drugs when I need them- often I do this when I feel nauseous and am extra grumpy, and it isn't till I take the meds that I realise how much pain I was in and how hard I was working just to get up out of bed.

I am sad I can't hold a pretty hand bag.
I am sad I can't lift a kettle.
I am sad I can't have long hair.
I am sad I can't stretch my arms out like normal people before exercise.
I am sad I can't stretch when I yawn.
I am sad I can't play computer games.
I am sad that cooking hurts. I like cooking.
I am sad that I can't pluck my eyebrows.
I am sad that most evenings I am in pain and too tired to be nice to people.
I am sad that I am never comfortable on the lounge or when trying to sleep.
I am sad that I have to take so many painkillers.
I am sad that I don't want to have sex because I can't figure out how to maintain posture or be spontaneous when I am in pain.

I am not sad that I can't wash up or hang washing out.

My mantra at the moment is "first world problems". I have all my limbs and some extra bits. I am clothed I am sheltered. I can work and play piano and sing and earn money. It's just that I don't feel like I have any energy left for life in general, keeping a happy home life seems to fall down the list and I can't seem to fix it.

Anyone know how to stay nice to people who don't seem to get how hard this is every day and how many decisions you have to make just to keep going and not fall in an agonising pain wracked heap?

Suggestions, thoughts, comments?

Thanks,
Ans
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Old 06-05-2013, 10:15 PM #2
fdupshoulders fdupshoulders is offline
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fdupshoulders fdupshoulders is offline
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I'm sorry that you're also in a lot of pain. I'm 22 and I'm confined to my recliner and can't work or do much. Even though I read that your husband has trouble understanding your issues, I think the fact that you have a partner is something that outweighs all of the bad parts of your current state. My girlfriend just broke up with me and I'm realizing that.

I think that you, like me, have progressed to a situation where you will benefit from surgery. The fact that you have cervical ribs is as close to proof of TOS as you can get. You can be thankful for that, I don't even know for certain that I have TOS!

It's hard to stay nice to people. Nobody understands the pain we're in. I've had my problems for nearly two years and I don't even remember what it feels like to not have pain or discomfort. Have you or do you see a therapist/psychologist? Maybe they can help in some capacity. I only recently started going but I think it will start helping once she gets to know me better.

By the way-those aren't just first world problems! Maybe the computer games or eyebrow-plucking, but wanting to be comfortable and out of pain isn't asking much.

I vote for surgery!



Quote:
Originally Posted by arlsandstrom View Post
I don't post very often, so hi everyone!

Bad day today. Had an amazing couple of weeks with no meds, no heat pack, and few grumpy outbursts. That was a month ago now. Then I did too much travelling carrying heavy bags and fell over in the hotel room when the shower rail fell off while I was leaning on it. Sometimes it's one thing that holds you back for ages.

I am writing because I am really struggling with this mentally. I am doing all the things I can to work on the physicality of tense muscles. But this is ongoing due to my extra rib. No end point, but it isn't bad enough all the time to have surgery to remove them. Meditating trying to stay calm and taking the drugs when I need them- often I do this when I feel nauseous and am extra grumpy, and it isn't till I take the meds that I realise how much pain I was in and how hard I was working just to get up out of bed.

I am sad I can't hold a pretty hand bag.
I am sad I can't lift a kettle.
I am sad I can't have long hair.
I am sad I can't stretch my arms out like normal people before exercise.
I am sad I can't stretch when I yawn.
I am sad I can't play computer games.
I am sad that cooking hurts. I like cooking.
I am sad that I can't pluck my eyebrows.
I am sad that most evenings I am in pain and too tired to be nice to people.
I am sad that I am never comfortable on the lounge or when trying to sleep.
I am sad that I have to take so many painkillers.
I am sad that I don't want to have sex because I can't figure out how to maintain posture or be spontaneous when I am in pain.

I am not sad that I can't wash up or hang washing out.

My mantra at the moment is "first world problems". I have all my limbs and some extra bits. I am clothed I am sheltered. I can work and play piano and sing and earn money. It's just that I don't feel like I have any energy left for life in general, keeping a happy home life seems to fall down the list and I can't seem to fix it.

Anyone know how to stay nice to people who don't seem to get how hard this is every day and how many decisions you have to make just to keep going and not fall in an agonising pain wracked heap?

Suggestions, thoughts, comments?

Thanks,
Ans
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Old 06-06-2013, 12:01 AM #3
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heybro heybro is offline
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I am very sorry and it is very good to post these things so you get it all out. We are all here to support one another.

Last edited by heybro; 06-06-2013 at 01:17 AM.
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arlsandstrom (06-07-2013)
Old 06-07-2013, 04:43 PM #4
arlsandstrom arlsandstrom is offline
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Join Date: May 2012
Location: Australia
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10 yr Member
arlsandstrom arlsandstrom is offline
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Location: Australia
Posts: 55
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Thanks for your reply. I hope you get some relief soon. Do try Alexander technique or feldenkreis or light touch chiro. It teaches you ow to release the muscles yourself, so you don't get so bad so quickly. It is all about being mindful of your head neck back relationship. Basic body engineering and thinking about how the muscles work together the easiest possible way. Oh yeah, and not doing a lot of things, which ill be hard for you on your own. Heat packs and a dish washing machine have changed my life.

I do have a therapist that I am about to start seeing again. Also a specialist ear nose and throat guy, who works with singers, so I am hoping he can give me some sensible advice about how much the TOS will affect my job as a classical singer. My other work is playing piano in singing lessons for kids, so the recovery time scares the crap out of me!

Thanks for listening.



Quote:
Originally Posted by fdupshoulders View Post
I'm sorry that you're also in a lot of pain. I'm 22 and I'm confined to my recliner and can't work or do much. Even though I read that your husband has trouble understanding your issues, I think the fact that you have a partner is something that outweighs all of the bad parts of your current state. My girlfriend just broke up with me and I'm realizing that.

I think that you, like me, have progressed to a situation where you will benefit from surgery. The fact that you have cervical ribs is as close to proof of TOS as you can get. You can be thankful for that, I don't even know for certain that I have TOS!

It's hard to stay nice to people. Nobody understands the pain we're in. I've had my problems for nearly two years and I don't even remember what it feels like to not have pain or discomfort. Have you or do you see a therapist/psychologist? Maybe they can help in some capacity. I only recently started going but I think it will start helping once she gets to know me better.

By the way-those aren't just first world problems! Maybe the computer games or eyebrow-plucking, but wanting to be comfortable and out of pain isn't asking much.

I vote for surgery!
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