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links56

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Joined
Oct 29, 2013
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177
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DX FIBRO
Diagnosis
01/2013
Country
US
State
IL
So I'm going to the Mayo Clinic For my Fibro, since my doctor won't do anything, I have been waiting 5-6 months for the appointment. It is a week long thing, I had to get accepted into the program after I was referred there. Then have a whole bunch of blood tests. Now in less than a week I will drive 6 hours there and stay in a hotel for a week that I can barely afford. The problem is my temporary disability runs out a few days after I get out of mayo. Unless they can work some miracles I am very worried about not being able to return to work. I am worried because I will lose my health insurance and won't have any income and I will loose everything I've worked so hard for. It's so stressful. Plus I'm in so much pain all the time I just don't really care about anything anymore. Wonder if they will help me?
 

mariposa

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Apr 19, 2013
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I can tell how stressful the part is about not knowing if you'll return to work, have insurance, etc... and I'm sorry that you're going through that. But I have to say that the Mayo part is so exciting!

Will you be able to be online during that week to let us know what's happening? Hope so! :)

Best of luck, links56!
 

Siderea

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Oct 22, 2013
Messages
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Diagnosis
10/2013
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US
State
ND
I sincerely hope you find answers at Mayo, especially considering the financial end of it. They'll offer you the best help that Western Medicine can. I also travel out of state for my doctor, but he's a naturopath. He's helped tremendously - way more than any western medicine doctor has ever done for me. It's expensive to travel, but so worth it, especially when I wasted a ton of money on doctors in town that did nothing for me.

Just breath. Don't get too stressed about this, because the stress will hurt you a lot. Just go and let the doctors take care of you. Save your energy for talking to the doctors. This is an investment in your health, and without your health you can't have a life.
 

1sweed

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Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
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links56, I am so happy for you in getting to go to Mayo. As Siderea, has said just relax and let the doctor's help figure out whats wrong and give you a solid diagnosis. And let us know how you make out. Please go and read my blog Day 7, and maybe you can find a way to make some money to tide you over if you lose your disability. I wish you the very best of luck and hope you get nice doctors. :)
 

links56

Distinguished member
Joined
Oct 29, 2013
Messages
177
Reason
DX FIBRO
Diagnosis
01/2013
Country
US
State
IL
I will have my phone with me so I will be able to use it. I wish this site was registered with taptalk so it would be easier to use on my phone.
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
One benefit of ACA (obamacare) is that you can get insurance if you lose insurance from an employer at any time. Not just during enrollment periods. Losing insurance is a qualifying event. I was just able to sign up after I had to leave my job due to fibro. There were a couple of glitches, but the customer service folks helped me out. If you have no income you can qualify for Medicaid if you are the only income earner. Otherwise it's based on combined income. I have a great plan with tiny copays and a small deductible for $50 per month. Check out the program in your state and it should alleviate one worry. Good luck at Mayo!
 

links56

Distinguished member
Joined
Oct 29, 2013
Messages
177
Reason
DX FIBRO
Diagnosis
01/2013
Country
US
State
IL
Well that makes me feel a little better. I still don't want to lose my job though. This is such a debilitating disease
 

links56

Distinguished member
Joined
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Messages
177
Reason
DX FIBRO
Diagnosis
01/2013
Country
US
State
IL
I'm leaving at 6 am and my first mayo appointment is at 1pm. Will try to post up dates. Thanks everyone.
 

Scotch

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Good luck, I hope it goes well for you :D. Keep us updated, please!
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
Good luck! And try to have some fun as well.
 

links56

Distinguished member
Joined
Oct 29, 2013
Messages
177
Reason
DX FIBRO
Diagnosis
01/2013
Country
US
State
IL
Well, day one at mayo: consultation with the doctor and diagnosis confirmation. Spent about 3 hours with the doctor and her nurse. They listened to all my concerns, we talked about fibromyalgia and the known differences between the brain of the person with fibro and the one without. We talked about medications and other options. Tomorrow I have a class that is supposed to educate me more and teach me pain management methods.
 

jmb0324

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May 23, 2014
Messages
20
Reason
Relative
Diagnosis
00/0000
Country
US
State
TN
Sounds like a very good class to share with us! I know there are many people that flat-out refuse to take pain meds, so if you learn some alternatives that'd be great to know! I hope you get everything sorted out on your end job, insurance, and pain-wise. It sucks that your doctor wouldn't do anything to put you in this predicament!
 

links56

Distinguished member
Joined
Oct 29, 2013
Messages
177
Reason
DX FIBRO
Diagnosis
01/2013
Country
US
State
IL
Day 2 at mayo: I sat in a class for 8 hours today. The way that they describe fibro is your body is stuck in a constant fight or flight state. When your body is in that state all your senses are extra sensitive. It's the body's natural defense mechanism but it is only supposed to last a short time until the threat the started it is gone. They also said the more you think about the pain the more of this substance p is made in your body which causes more pain. Also when your body is in the fight or flight state blood flow is diverted from the brain because it is needed elsewhere for the fight or flight state. The muscles become tense in this state because they are prepared for extreme use, because our bodies are stuck in this state the brain and muscles are soaked in lactic acid which is responsible for sore muscles. I have more class tomorrow and my fingers are getting wore out from typing this on my phone.
 

Siderea

Senior member
Joined
Oct 22, 2013
Messages
231
Diagnosis
10/2013
Country
US
State
ND
Fight or flight mode refers to adrenaline, so what it sounds like to me is that they're saying your adrenal glands are burned out. My doctor is treating my burned out adrenals, but is not treating it like it's what's causing my fibro. I'll quiz him about that.

Glad you're finding it worthwhile to be at Mayo! I almost went myself, so It's interesting to hear what I would have gone through.
 

kmpisces

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Jun 20, 2013
Messages
151
Diagnosis
00/0000
Country
US
State
PA
I really hope that your trip is helpful for you. I know how hard it is living with this type of illness. Fibro is just one of my health problems but that alone is enough to be debilitating.
 
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