Chronic Epstein-Barr Virus

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Chronic Epstein-Barr Virus
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How do you manage physical discomfort, pain, or fatigue while in bed?

There can be a range of reasons why we may feel physical discomfort, pain, and fatigue while spending our days in bed—from health symptoms and muscle tension to stiffness, even stress. Finding relief and some level of comfort can be a constant challenge, but it’s also essential for maintaining a sense of balance.

For some, it may involve using supportive pillows or cushions to adjust their body alignment and alleviate pressure points. Others may find relief through gentle stretches or movement, when possible, or by using heating pads or cold compresses to soothe sore muscles. Breathing exercises or practicing regular hobbies can also help reduce stress and ease the mind, which in turn can ease physical discomfort.

Sometimes, it’s about creating a comfortable environment—adjusting room temperature or dimming lights to promote relaxation. And for many, reaching out to loved ones or healthcare providers for advice or support can provide both physical and emotional comfort.

What helps you manage physical discomfort, pain, or fatigue while you’re in bed?

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

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hi, i'm new here (•ᴗ•,, )

i'm a younger person who has been in chronic pain for around a year and a half (since april 2023) without answers. i had chronic EBV mono for about seven months, late december 2023 to early august 2024.

i have chronic stomach pain and GI issues. currently, my pain is every single day and it can be from mild discomfort to 'take me to the ER'

i've been diagnosed with autism over the summer, which is so great! i had agoraphobia for many months, but with twice-a-week therapy, i was able to overcome it.

i also was diagnosed with POTS only ~1 week ago.

i went to a hospital 2 hours away to a GI specialist, and it was one of the worst doctor visits i've ever had. it was a very religious christian institution, which i was not aware of (i am personally not christian). i don't want to go into details, but i feel very lost.

i am on the journey of getting treated for endometriosis-like symptoms by an out-of-state gynecologist. i am on a new medication and may get surgery in around three months.

i'm so tired of being in constant pain. i would love to know if anyone has gone through something similar to me, i feel so alone right now.

⁀➷ #ChronicIllness #Autism #AutismSpectrumDisorder #ChronicFatigue #ChronicEpsteinBarrVirus #Endometriosis #POTS #IrritableBowelSyndromeIBS #EhlersDanlosSyndrome #HypermobilitySyndrome #Neurodiversity #BorderlinePersonalityDisorder #PanicDisorder #PanicAttacks #Agoraphobia #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #PTSD #PostTraumaticStressDisorder

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I’m new here!

Hi, my name is karina, new here but looking for community to connect with - been struggling with chronic mono for 10 years and very heavily this year. Didn’t know it was the same EBV I had in high school until causing me many different sicknesses (mono, strep, tonsillitis, viral infections) until this year so I’m finally wrapping my head around having a chronic illness. Have had mono 4 times this year and it’s been very hard mentally & physically. Also living with chronic back pain with no sign of any answer why yet for almost 4 years. Lots of love to all those in a similar boat, or any boat at all!

#MightyTogether #ChronicMono #ChronicPain #mononucleosis #EBV #ChronicEpsteinBarrVirus #ChronicActiveEpsteinBarrVirus

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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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