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


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Old 07-22-2014, 12:26 AM #1
hannahSED hannahSED is offline
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Unhappy tos..it sucks!

My days now mean nothing, they just dont. I know I shouldn't give up or think how I am thinking.i thought I was a strong person, I dont know how to deal with any of this, I dont want to deal with any of this and it sucks that I have too.
I feel like its getting the best of me, I feel stuck, depressed ive never felt depressed, its not a good feeling.
I wish I could look past this injury but its hard especially when you get reminded that your broken every dang day every dang minute every dang night. Same stuff everyday just a different day on the calendar.
My days mean notging to me now.
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Old 07-22-2014, 12:55 AM #2
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Do you have anyone to help you with the drs, atty and w comp stuff?

Tell doctor & atty about the pain and the depression caused by the pain and loss of quality of life.. often pain med rx together with an anti depressant will work together for best pain relief.
make a journal , notes , or time line, ask for copies of all tests & reports..

A good atty should be able to help you locate a good dr, so you can get meds and other things approved..

If they aren't doing anything to help you fire them and search out one that is very good. TOS is a tough injury to claim as it doesn't usually 'show" on testing, docs like to have something visible to help prove injury , so you need a real good atty on your side. A well known TOS dr opinion & dx will carry weight in the w c case/hearing.
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Old 07-22-2014, 10:44 PM #3
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Do you have an attorney? If not, you should get one. Like a nice ambulance chasing kind, someone that advertises on daytime television.

Also, you should apply for social security disability if you haven't, like do this tomorrow.

I saw that workmans comp denied your pain meds. That's messed up. Do you have other insurance to pay for this? If not, may I suggest the following websites for medications:

Needymeds.org
Goodrx.com
211us.org

I have insurance, but they sort of mess around when it comes to prescriptions at times, and if have found that the coupon on goodrx.com is actually better than what I would have to pay with insurance.
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Old 07-22-2014, 11:00 PM #4
20YrsTOS 20YrsTOS is offline
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Quote:
Originally Posted by hannahSED View Post
My days now mean nothing, they just dont. I know I shouldn't give up or think how I am thinking.i thought I was a strong person, I dont know how to deal with any of this, I dont want to deal with any of this and it sucks that I have too.
I feel like its getting the best of me, I feel stuck, depressed ive never felt depressed, its not a good feeling.
I wish I could look past this injury but its hard especially when you get reminded that your broken every dang day every dang minute every dang night. Same stuff everyday just a different day on the calendar.
My days mean notging to me now.
Hello, I'm sorry u are having a difficult time with this syndrome. After 21yrs or so dealing with TOS, I know what you are going through. So, you are not alone. It's great you expressed how you are feeling. Since I've been dealing with this for so long, I want to leave you with this.

1) Don't focus or give TOS all the power. Yes the pain is terrible, but you are blessed when GOD opens your eyes every morning. Put your focus on calling attorneys, doctors, and anyone else that can help you. When you focus on your symptoms, it's going to bring you down. Life is too precious to give up the fight.

2) Write how you feel down in a journal. Writing things down takes your mind off the pain and symptoms.

3) If you are not doing it, get out and try to do something fun. Yeah the pain and other symptoms might start, but at least you had a moment to get your mind off TOS.

4) Keep talking to relatives, friends, etc., If they don't believe you, keep posting on here, and we will response. So you are not alone. You have to keep fighting this each and every day. It's not easy, but sooner or later an answer will come.

The one thing that have kept me smiling, laughing, and at peace these 21 yrs is when I pray to GOD for strength and peace. He has never failed. This is what I do first every day, is to seek him. What Jomar stated are great ideas.

I pray you will receive guidance and healing through your situation. It's easy to give up, but keep fighting each and every day. GOD BLESS!!!
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Old 07-23-2014, 01:19 AM #5
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Default Yes, it sucks! Bigtime!

I'm so glad you posted. You need support, and this is a good place to find it. Friends and family want to help, of course, but really don't know what you're going through. They feel frustrated and helpless and don't know what to do.

It's natural for you to be feeling angry and depressed about things. You need a healthy way to express those feelings, though, and have gotten some good suggestions from this thread. You don't say what part of the country you are in, but are you near a teaching hospital? That might be a good place to look for a support group and/or a "Pain Psychologist" to help you through this. They may even have a Pain Clinic…

Hopefully, your attorney has gotten WC approval for some pain meds for you by now. If not, start making some noise! It is ridiculous for those to be denied. You may need a long-acting and a short-acting opioid for the pain, an rx for nerve pain (like an anti-convulsant or even some of the anti-depressants are good for this), a muscle relaxant (Flexeril or Zanaflex), something to help you sleep (amitriptyline or trazodone), etc. Ask your doc for a referral to a Pain Management Specialist. It's no wonder you're down in the dumps, with no meds on board!

A lot of us have been right where you are, believe me. Your feelings are valid and I know it's hard to fight the negative self-talk. Try putting a limit on the self-pity you may be feeling - give yourself say, 15 minutes a day for this, then move on to something more productive. You didn't ask for this and it must feel so unfair that it is hitting you this young. And don't feel guilty - even suicidal ideation is perfectly natural when we get hit with stuff like this. The key is to not get "stuck." (Easier said than done, I know!)

You're not alone. My hope for you is that with a good treatment team (neurologist, pain psychologist, pain management specialist, physiatrist, PT, bodyworker, etc.), the right meds, restful sleep, some healthy activities to keep you distracted from the pain, and lots of support from your loved ones and fellow TOSers, things will start to look brighter.

Remember, this is a process and not an event. It might take some time to get the medical stuff going. It can be frustrating in the beginning, but you've got to keep on keeping on, as they say. I wish you the best and hope you will keep posting on the TOS forum. There is a lot of knowledge and a ton of experience for you to draw from on here.

Hope you are feeling better today. I know how overwhelming it can be to fight the TOS monster. But fight we must! And helping each other through can be an important part of the solution.

Take care,
Alison
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Old 07-25-2014, 02:18 PM #6
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Default yes it does suck

Im so sorry youre having to deal with TOS issues.
You are so right, it does suck, it sucks the life right out of you to deal with pain day and night and yet look 'just fine' so people have no clue your are suffereing unless you complain--and who WANTS to be known as a whiner?
Its so hard.
Please know you are worth being treated well, you are worth taking good care of yourself. You deserve to be heard and respected for your questions and concerns about TOS.
It helps me to find ways to be good to myself, because others arent going to fix this for me. Take a bath, have the chocolate, read the book, relax, and Ive learned I have to ask for help-as much as that sucks, I cant go through life with this kind of pain andb do everything without any help at all. Id wind up a drug addicted hot mess if I kept trying to do that.
Stick up for yourself-anyone having to walk in your shoes would be more understanding.
Gentle hugs!!
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