Since my early 20’s I have been enduring pain and fatigue on a daily basis but at what point will the body simply say “I’m Done!” The daily pain and fatigue is just the tip of the ice berg. It’s been close to 20 yrs that the pain and fatigue has continued, over 20 years if you include symptoms starting in my teens which doctors were unable to discover the reasoning for that.

All I know is everyday is a new challenge or a repeat day of symptoms. Yes I have chronic ebstein barr virus (CEBV) and it does seems to effect everything … every organ, bone, muscle, tendon and recently I heard that CEBV can effect the bone marrow and cause hypocellular bone marrow or a hypercellular bone marrow. Interesting due to me having so many bone pains. Considering I have heard that CEBV can effect everything within the body this not out of the realm of a possibility. I read something previous, years ago, about it effecting the bone marrow but unfortunately can not remember the specifics.

I know that when I do too much I do get a lot worse. One lesson I cn share with you is be sure to listen to your body. If it says lay down then do it or you will regret it. My symptoms and conditions are vast:

Conditions:

  • CEBV
  • Chiari 1 Malformation
  • Levoscoliosis
  • Spasmodic Torticollis
  • Gout
  • Osteoarthritis
  • Degenerative Disk Disease
  • Syringomyelia
  • Chronic Fatigue Syndrome
  • Hypoglycemia
  • MTHFR
  • Factor V Leiden Mutation
  • Fibromyalgia
  • Spina bifida occulta
  • Irritable Bowel Syndrome
  • I know there are others but this is all my brain can think of at the moment.

 

Symptoms:

  • Balance issues: feeling like I am being pulled to the side (mostly to the right), vertigo, sea sickness when sleeping (need more valium), (daily)
  • Tips of toes are numb on right foot, bottom of feet always in pain like walking on rocks (daily)
  • Feet/legs/hands numbing needles/pins, massive weakness in legs, (daily) (need gabapentin)
  • No feeling in various areas of body which come on suddenly such as large areas of thigh or calf,
  • All over pain and fatigue, muscle weakness, (daily)
  • Ribs -front to back, squeezing the life out of me has been coming/going a lot more,
  • Headaches (just painful not bothered by noise or lights), very painful/tender spots on head,
  • Kidney and liver pains,
  • Brain fog, problems concentrating (daily)
  • Visual disturbances: blurry, tunnel vision at times, things turn grayish like a gray lens is over my eye, stabbing pains, itchy or dry feeling, or tearing. At varying times throughout day.
  • Leg doesn’t work at times … need to drag it (mainly right leg). (daily) Legs went completely limp a year ago couldn’t feel them or move them, was in the hospital at time.
  • Spasticity/very tight throughout body. Have trouble twisting and can barely put my socks on so stiff, can barely wipe bottom after going to the bathroom, (daily)
  • Itchy and/or burning palms/feet. Also get burning sensation though out body.
  • Speech issues: stuttering, slurring words, stumbling words, babbling words which don’t even resemble words, problems getting words out. (varies throughout the day)
  • Lips, eyelids, cheeks (side of face) twitch (mostly on the right side) or they go numb also happens in other areas of body
  • Absent seizures
  • Difficulty swallowing at times and sometimes choke just breathing.
  • Ringing in ears at times (several times a week)
  • Stabbing pains
  • Swelling, burning hands and feet
  • Butterfly rash on face
  •  Positive Romberg Sign
  • Cannot walk a straight line (heal to toe)

Suspected other conditions:

  • Multiple Sclerosis
  • Lupus
  • Lyme Disease
  • Rheumatoid arthritis

So with all this going on for over 20 years and no help and I feel my body getting weaker. Each year there is more pain and more fatigue and more symptoms. What I do not understand is how someone can be in so much pain and still live. When I was younger I could’ve never imagine being in this much pain daily. My only words to leave you with is stay strong and big hugs.

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