1. < Chronic Pain

Ebstein Barr & Fibromyalgia

Posted by nicgorsuch @nicgorsuch, Oct 8, 2018

Hello - I'm at the end of my rope mentally - I need to find a doctor who specializes in autoimmune diseases, including Ebstein Barr & Fibromialgia. I am in so much pain every day, brain fog, and NO ENERGY at ALL. If anyone has dealt with this, I would love some input. I don't even know where to start...

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 8, 2020
In reply to @rwinney "Hello @sarasally2. I always appreciate those before me that have lived so long with chronic illness...." + (show)
@rwinney

Hello @sarasally2. I always appreciate those before me that have lived so long with chronic illness. The fact that you speak of your challenges and are still here to help others tells me that:

1. It ain't easy, but it's doable

2. There is a huge amount of support out there even if from complete strangers

3. Being thankful because we always know it could be worse

Thanks for the inspiration today!
Rachel

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@sarasally2, I am going to slide in here and say Welcome and thank you for turning to Connect for support and sharing of experiences. We are here to “listen”, accept, and understand. We are not medically trained and cannot diagnose or prescribe.

We need to help you move into the now. Bring your resilience and your experience to share. Don’t be shy. Be safe and protected. Chris

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jbri | @jbri | Feb 8, 2020
In reply to @bookahol "I also have been diagnosed with fibro. I have had it for over 30 years. I..." + (show)
@bookahol

I also have been diagnosed with fibro. I have had it for over 30 years. I have tried everything -- nothing has worked. It is difficult being upbeat when your whole body throbs.

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Yes, it's very difficult to be upbeat when you hurt 24/7. I have a neighbor who accused me of being angry all the time because I had a very bad day where I didn't control myself very well; and he witnessed it. A good Christian man, but not able to give me the benefit of the doubt or to forgive. I haven't dealt with EBV as long as you have with Fibro; but it's over 20 years and it continues to take its toll.

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sarasally2 | @sarasally2 | Feb 8, 2020

I rarely see anyone but yesterday the neighbor saw I posted a free TV on the website and came to get it and told me I looked terrible. I have told her a thousand times not to bother me in the morning but things go on her schedule so I wont see her for another year or more! I see on my medical reports that I am a very pleasant person,HA!

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 8, 2020
In reply to @healingone "(I have been diagnosed with Central Sensitization with Fibromyalgia.) I asked my doctor to refer me..." + (show)
@healingone

(I have been diagnosed with Central Sensitization with Fibromyalgia.)

I asked my doctor to refer me to Mayo for chronic fatigue (I had it since several bouts of Epstein Barr.) I was denied.

I found out Mayo accepted self referrals and would see me when I named all of the body systems that I had challenges with.

I recommend that you get Mayo to assess you for Chronic Pain Syndrome and Central Sensitization Syndrome.

Jacksonville's Mayo Pain and Rehabilitation Program was a God send for me.

Have a great day!

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@healingone Thank you for telling Connect Members that this option for acceptance may be available for them. I am glad that the Mayo program worked so well for you. What was the most important takeaway from the Pain section that might help others? Be content and at ease today. Chris

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1 reply
healingone | @healingone | Feb 8, 2020
In reply to @artscaping "@healingone Thank you for telling Connect Members that this option for acceptance may be available for..." + (show)
@artscaping

@healingone Thank you for telling Connect Members that this option for acceptance may be available for them. I am glad that the Mayo program worked so well for you. What was the most important takeaway from the Pain section that might help others? Be content and at ease today. Chris

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At Mayo's Pain and Rehabilitation Program I learned if I "stick with the program" (follow the strategies they taught) I can manage and increase my quality of life.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 8, 2020

Sometimes we just have to follow the guidelines and do it their way. And it works. Good for you. I hope your program continues to support your need for pain management. Be safe and protected. Chris

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