Chronic Epstein-Barr Virus

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Chronic Epstein-Barr Virus
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Diagnosis Dilemma #Fibromyalgia #MS #ChronicEpsteinBarrVirus #Anxiety #legalblindness

7 years ago I was evaluated by a neuro ophthalmologist due to a detached retina and sudden vision loss. My retinalogist noticed some lesions on my brain in the MRI and suggested I see a neurologist. He found them “insignificant” but due to my sudden vision loss sent me for evaluation. I ended up at an immunologist who ordered a massive amount of blood work. After review I was asked back for a consultation. He then told me after process of elimination he decided to dx me with Fibromyalgia. He also stated I had 7 out of 8 indicators for MS. Not enough for a positive dx.
All bloodwork pointed to a high level if Epstein Barr virus as well.
Now 7 years later and after fatigue, left side pain in my arm and leg. Numbness in my hand burning pain in my back and hip. Weakness in my legs and ankle. My legs feel like I’ve stepped in concrete most of the time. I have vision distortion and dizziness. Skin issues, rash sensitivity to sun on my arms and legs.
My provider is once again sending me to the neurologist and requesting a head MRI. I’m so tired of all the evaluation and no answers. I’m tired of being treated like I’m faking not feeling good. I’ve aged 25 years in the last 10.
Has anyone else had this much trouble with getting a diagnosis? Any suggestions on how to deal with this ?

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Scared and frustrated.

At this very moment I feel like I have been cursed by a power I cannot see or understand. For the past 20 years my biggest health struggles we’re strictly mental health. #BorderlinePersonalityDisorder #PTSD #MajorDepressiveDisorder #SuicideAttemptSurvivors
After years of turmoil and a lot of self work I had finally conquered these mental health issues that had been dominating my life. I was able to come off all my medication last summer. I had never been so happy and healthy. I was just getting use to the new sensation of emotional stability in my life. Now my physical health has been struck down and is declining at a rate that is hard for me to fathom. 2 days ago I was diagnosed with Lyme Disease. Today according to my blood work my body is also being ravaged by the Epstein-Barr virus. Doctors also suspected I have a underlying autoimmune disease. My body feels like it is completely eroding away. Joints are getting worse daily. Physical pain and discomfort getting worse daily. Neurological symptoms continue to persist and get worse at certain moments. MRA imagining of my head for potential blood clotting came back normal. CT scan of head was normal. The medical care here in the southern tip of South Carolina has been abysmal. No infectious disease specialists in my area. Soonest a neurologist can see me is August. Tomorrow I will be hopefully flying back to Chicago area for better care. Blood work for the Lyme Disease has been back and forth. I tested positive now negative. The dismissal from both the doctors and my family has made it very difficult to stay calm. Very difficult. With the way things are progressing. I do not know how much longer I will last. I also don’t know how much longer I can endure this level of pain and discomfort. I would rather pass more kidney stones than this. I would rather get hit by a car again than this hell I have descended into. I’m not depressed or sad. I can’t help but feel the system is trying to euthanize me. #LymeDisease #ChronicEpsteinBarrVirus

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What can you add to your living space to make it more accessible or comfortable?

Let's think about accessibility and comfort today.

Spending a lot of time in bed makes your bedroom or other living space a very important place. Making sure those places are comfortable, accessible, and tailored to your specific needs can be a big help in managing symptoms or getting around more effortlessly.

What's one thing you can add to your living space to improve your quality of life? What's something you already have that you would recommend to someone else?

Let us know in the comments below! ⬇️

#ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis
#Lupus #Cancer #Gastroparesis #MultipleSclerosis #RheumatoidArthritis #InflammatoryBowelDiseaseIBD #ChronicEpsteinBarrVirus #MentalHealth #ChronicDepression #Anxiety #PanicAttacks #InvisibleIllness
#alwaysinbed

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Hello! I’m Officially Your New Co-Leader!🥳🌻🥰

My name is Wendy, and I have been an active member on The Mighty for a few years now. This is my first time being a group leader, and I am so excited and honored to serve in this capacity.

I am a positive, vibrant person who lives with M.E./CFS, fibromyalgia, Epstein Barr Virus, hypothyroidism, and multiple chemical sensitivity (MCS). I have been sick for 20 years, but my illness progressed throughout the years, to where I could no longer work, and now it’s been five years since I worked. As you well know, living with chronic illness changes everything, but I insist on living my best life everyday and enjoying what I can!

I love movies, hanging out with family and friends, unique tasty foods, working on my YouTube Channel, gardening, rich conversations, and being creative!

I want the best for us all and wish you peace and love on your journey!🌻💞Wendy #MyalgicEncephalomyelitis #Fibromyalgia #ChronicEpsteinBarrVirus #LymeDisease #MultipleChemicalSensitivity #HypothyroidismUnderactiveThyroidDisease #MentalHealth #ChronicIllness #CheckInWithMe #DistractMe

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I'm new here!

Hi, my name is unpredictableserval6. I'm here because I have been on a 20 something year struggle finding an antidepressant that will help me. You name it I've tried it! Even ones like Cymbalta, did not help at all. I'm also currently on MAT, as I became dependant to the opiates I was prescribed when first diagnosed with Fibromyalgia back in my early 20's.
The way I describe it, the first few times I took an opiate, that's the way I thought "normal" people felt. Had the energy and want to get up and organize and clean. Had focus. Didn't ever feel "high."

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #ADHD #AddictionRecovery #OCD #ChronicEpsteinBarrVirus

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What type of mattress helps you to stay comfortable in bed?

We all have different needs and preferences when it comes to picking the right mattress, especially for those of us who spend a lot of our time in bed. Some of us may prefer firm mattresses, others soft or memory foam, maybe even Tempur-Pedic (or for the real adventurers among us… water!).

What type of mattress do you prefer? I like my mattress more on the firm side with gel infused breathable memory foam.

#ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis
#Lupus #Cancer #Gastroparesis #MultipleSclerosis #RheumatoidArthritis #IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD #ChronicEpsteinBarrVirus #MentalHealth #ChronicDepression #Anxiety #PanicAttacks #InvisibleIllness #alwaysinbed

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Learning and growing even when I am sick with #COVID19 for the third time. #ChronicEpsteinBarrVirus #EhlersDanlosSyndrome #Anxiety

When you have worked at a company before and considered one location your "work home" and you leave a high mental stress job for that, that was my life. But then the company that I came back to work for set up a new payscale that is impossible to achieve if you are working full-time hours. Then, you have to remember that this is a type of hair salon. My personal paychecks have been dwindling and my husband has had to pick up the pieces with his paycheck which he makes less per hour than me and he is bringing home the majority of the money. That was and is a red flag. Now, on the cusp of the Christmas holiday, I have officially been diagnosed and tested positive for Covid-19 for a third time in two years. And I did in fact get the Pfizer shots. I know who gave it to me, both personally and professionally. And if my company has a problem with it I will stand up for myself and if need be take thus other person down. My pcp wants me out for either 5 days for the fever, but if that doesn't calm down for 10. I unfortunately was too late to take any of the proven meds that combat this. Because the old motto at my job of "if you have a fever don't come in, no matter what", no longer holds true. Now it is "work even if you are contagious unless it bad enough someone sends you home". And then they require that you spend money you don't have, even if you don't have insurance like myself (it's too expensive atm and be able to pay rent), on both doctors and covid testing. I have received permission from my husband and others to when opportunity knocks jump. And it most certainly has. Simply waiting on the last interview but have already received an informal offer that pays several more dollars per hour. Is it at a burger place, yes, but I need security that I haven't had for a long time, and I would rather do that than be at a job that doesn't value me or any other employee. It's been a tough road especially battling Covid-19 with a completely compromised immune system. But I'm learning where I would rather be in life and where I want to go. Yes it's taken me 10 years of doing hair to come to this point but at least I made it here. Even battling the plague I still have hope. And my family has my back and wants me to get better, even though when I got the news all I wanted for Christmas was to be with my family. But my awesome mom, and grandfather made plans, and we'll see. Maybe we'll be able to do something virtual.

Moral of this story is even when the world, your job and especially your own body are against you, there is hope.

#SilverLinings #EhlersDanlosSyndrome #MentalHealth #Hope

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