Monday, November 19, 2012

What exactly is the problem? Thoughts on TBI & Fibromyalgia

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You don't feel good.  You go to the doctor.  You take meds.  Hopefully, you feel better.  That's the way things ideally should work.  With the invisible illnesses it goes so much farther than that.  You don't feel good.  You go to the doctor.  He gives you meds.  You might not feel better.  You keep going.  You keep having symptoms.  Life can be quite miserable.  What is the real problem(s)? What exactly is it? What can we do to make it better? Will it ever get better?  It is TBI? Is it PTSD? Is it something else?

Here we are, over a year from the time that I brought up to the doctors that my husband had been having these "absent" type seizures.  He has went through a host of drugs, some with allergic reactions.  A few have truly helped his functioning.  The neurology department diagnosed a few types of seizures.  Then, they dismissed them as psychogenic in nature and referred him back to mental health.  We have been through the works and spent much of the last year and a half in various doctors offices.  

While it is obvious that stress makes most any illness more exacerbated, we have always thought that there is a more physical relationship to John's symptoms.  Even with a diminished sense of self awareness, he still has these feel awful days when he reports virtually no stress. 

John's case is complicated and that's why we bypass the most local VA facility to go to what we thought was a better one, yet so much is still left unanswered.  Fatigue, confusion, dizziness, sleep disturbances, daily headaches, and this brain fog of  taking long times to respond and trouble speaking were all symptoms we (and doctors) attributed to his Traumatic Brain Injury (TBI) or maybe his severe case of Post-Traumatic Stress Disorder (PTSD).  John has always had pain.  He gets compensation from the VA for arthritis related to some injuries and he takes daily meds for pain.  Last year, we found out about some nerve conduction problems in his extremities.  John would drop things or loose feeling in his arms and legs.  Now we have radiology reports that there are hotdog shaped tumor like places along John's spine and throat.  Part of what we have been looking at as a typical seizure like episode includes falls, change in consciousness, dizziness, vision disturbances, and a massive nose bleed out his right nostril.  This massive nose bleed has been unexplained by any doctor or medical professional and I've started taking lots of pictures when this happens so providers can see what I am trying to describe.  

An interesting finding for me was that I looked back into our first case management phone note from the VA Medical Center and found that headaches, falls, dizziness, confusion, and nose bleeds were his complaints before ever presenting at the facility over 6 years ago.  I remembered the headaches, because they dominated life.  They were terrible.  I remembered John spilling numerous drinks on a brand new room sized rug.  Within a year, it was past the point of being cleanable and I had to trash it.  John spent most of the time at home sleeping while I was at work and I didn't pay extreme attention to his daily routine or symptoms.  Then, looking back I saw these same host of symptoms that are only worsening. 

Last week, John spent a couple days in the hospital with chest pain.  It was unexplained.  EKGs were fine.  Blood pressure and pulse were normal.  It wasn't anxiety.  It wasn't stress.  It was just atypical chest pain.  A stress test ruled out any other cardiology related problems.  So, they sent us home without any real answer of why his chest was so severely hurting that he couldn't move, had trouble breathing, walking, talking, and feeling his legs and arms.  

John did some research on fibromyalgia.  Virtually every symptom that I can find and research fits.  Not one, not two, not 10.  Almost every symptom fits his unfortunate daily life experience.  From the emotional symptoms of anxiety and depression to the gastrointestinal symptoms, it all fits.  The neurological symptoms of dizziness, fainting, numbness or tingling sensations, ringing  ears, sensitivity to light, and noise intolerance all are real and present. Other symptoms are feeling spatially disoriented, balance difficulty, clumsy walking, dropping things frequently, difficulty judging distances and difficulty seeing what you are looking at. (Click here for one blog I referenced

John read somewhere on the web that the VA has linked a service connection to fibromyalgia and vets, particularly ones that served in Southeast Asia prior to 2002.  These vets were given a host of anthrax and other immunizations that may be linked to this and other problems.  So, these thoughts have sparked our interest.  We've already began to ask our medical providers for answers.  In the meantime, I thought I'd share this with you.  You can can offer any feedback that is helpful, it is welcome and appreciated. 

1 comment:

  1. April: The chief neurologist told John that becuase they knew John had TBI, these symptoms were all attributed to that. However, when the origin of symptoms are unknown they attribute them to fibromyalgia.