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…

Liked by lacudia

Hello @nicgorsuch, welcome to Connect. I'm glad you found us. I'm tagging our Moderator @kanaazpereira to see if she is able to move your post to the following discussion where it will have more visibility with members that share your symptoms. You might find it helpful to read the discussion and post any questions you might have in the discussion.

Groups > Infectious Diseases > treatment for chronic epstein barr
https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/

@nicgorsuch, are you able to share what medications your are taking? Some medications have a side effect of causing brain fog.

John

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Hello my name is Beryl…..I have been at the level you are at now…..So take a deep breath and think UP……..you have contacted the people that will help you if you can take advantage of the Mayos special Clinic or something like it ……you obviously need someone that is a specialist and can put you on the road to recovery……upwards and onwards and the best of British luck to you ……..meantime talk to us……

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@johnbishop

Hello @nicgorsuch, welcome to Connect. I'm glad you found us. I'm tagging our Moderator @kanaazpereira to see if she is able to move your post to the following discussion where it will have more visibility with members that share your symptoms. You might find it helpful to read the discussion and post any questions you might have in the discussion.

Groups > Infectious Diseases > treatment for chronic epstein barr
https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/

@nicgorsuch, are you able to share what medications your are taking? Some medications have a side effect of causing brain fog.

John

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Thank you John. I'm not on any medications….just supplements. I was on pain meds for a long time for my degenerative disc disease/broken vertebrae/herniated discs, but after spinal surgery a couple years ago, I was able to get off the meds last year…although I'm still on constant pain every day/hour/minute. 🙁

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@beryl

Hello my name is Beryl…..I have been at the level you are at now…..So take a deep breath and think UP……..you have contacted the people that will help you if you can take advantage of the Mayos special Clinic or something like it ……you obviously need someone that is a specialist and can put you on the road to recovery……upwards and onwards and the best of British luck to you ……..meantime talk to us……

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Thank you Beryl!

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my daughter was having multiple strange symptoms and saw many specialists-eventually diag. with fibromyalgia. more helpful than any of the specialists was a book by Dr G. Liptan who herself suffers from it. The Fibro Manual by Ginevra Liptan-excellent resource-good luck

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I've had my issues again with EBV for the last several months — 2 years almost. Always there has been a certain amount of muscle/bone discomfort that accompanies these reactivations for me. Here I've found a good chiropractor who helps considerably. I also use an acupuncturist, although finding a good one was a real task. I know these suggestions are not "cure-alls." But they have helped.

Liked by rwinney

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(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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I was diagnosed with fibro/CFDS 30 years ago, got diagnosed with everything from soup to nuts and a lot of the nuts. Went to the Cleveland Clinic to rule out some things and left with POTS, fibro and CFDS. Not much has changed in all these years, I tried tons of meds and still they insist on giving you the same things that didn't work 30 years ago. As the years have gone by I have dealt with other issues which flare up the fibro so it is a daily struggle. I find" Fed Up with Fatigue" to have some good info, what works for one doesn't for the other but the main thing is not to give up. I do know some who recovered but not many. Don't feel bad if something doesn't work for you or what people think, that has been tough for me, that feeling of letting everyone down. It is a terrible disease, pace yourself, and know you are not alone.

Liked by rwinney

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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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@sarasally2

I was diagnosed with fibro/CFDS 30 years ago, got diagnosed with everything from soup to nuts and a lot of the nuts. Went to the Cleveland Clinic to rule out some things and left with POTS, fibro and CFDS. Not much has changed in all these years, I tried tons of meds and still they insist on giving you the same things that didn't work 30 years ago. As the years have gone by I have dealt with other issues which flare up the fibro so it is a daily struggle. I find" Fed Up with Fatigue" to have some good info, what works for one doesn't for the other but the main thing is not to give up. I do know some who recovered but not many. Don't feel bad if something doesn't work for you or what people think, that has been tough for me, that feeling of letting everyone down. It is a terrible disease, pace yourself, and know you are not alone.

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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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@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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@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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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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@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

Liked by healingone

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@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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