Wednesday, July 8

What Is Wrong with You, Anyway

People often ask me what exactly is going on with me medically...besides the technical terms of peripheral polyneuropathy, fibromyalga, and encephalopathy that I've learned to rattle off my tongue with ease. You can go back & read my original post on this or you can read the following "brief" synopsis of my conditions courtesy of wikipedia:

Ok, so peripheral polyneuropathy is a neurological disorder that occurs when many peripheral nerves throughout the body malfunction simultaneously. It may be acute and appear without warning, or chronic and develop gradually over a longer period of time. Mine occurred slowly over time.

Mine was triggered by severe (like radically severe) deficiencies of vitamins B12 and B1. Many polyneuropathies have both motor and sensory involvement and some have autonomic dysfunction. Symptoms depend on the type of nerves affected; motor, sensory, autonomic, and where the nerves are located in the body. One or more types of nerves may be affected.

Common symptoms associated with such damage are muscle weakness, cramps, and spasms. Loss of balance and coordination may also occur. Damage to the sensory nerve can produce tingling, numbness, and pain. Pain associated with this nerve is described in various ways such as the following: sensation of wearing an invisible "glove" or "sock", burning, freezing, or electric-like, extreme sensitivity to touch.

Under normal circumstances, pain sensations are carried by unmyelinated and thinly myelinated nerve fibers. Guess what huge components of myelin are? You got it, B12 & B1! Guess what your body just sort of needs in general? Right again, B12 & B1.

So my poor body was desperate for this vitamins & decided to “borrow” them from my nerves’ myelin. This caused lesions or holes to occur in the myeline. And after a peripheral nerve lesion (or hole), a neuroma (or nerve swelling) may develop at the stump.

The neurons then become unusually sensitive and develop spontaneous pathological activity, abnormal excitability, and elevated sensitivity to chemical, thermal and mechanical stimuli. This phenomenon is called "peripheral sensitization”. More simply put: my nerves just kind wig out of their own accord.

Moving on: Fibromyalgia, basically means muscle and connective tissue pain. FMS is a disorder classified by the presence of what is often termed “medically unexplained symptoms” that include chronic widespread pain and a heightened and painful response to gentle touch. Other delightful features of FMS include debilitating fatigue, sleep disturbance, and joint stiffness. In addition, people with FMS also frequently experience a range of other symptoms that involve multiple body systems, that include sensations of numbness and tingling abnormal motor activity and cognitive dysfunction. An increased prevalence of affective and anxiety-related symptoms is also well known. Our guess is that the peripheral polyneuropathy was the trigger for my FMS.

Then there’s the Encephalopathy, which literally means disorder or disease of the brain. In modern usage, encephalopathy does not refer to a single disease, but rather to a syndrome of global brain dysfunction; this syndrome can be caused by many different illnesses. To put it bluntly, it’s brain damage. Mine was caused by the stress of the first 2 conditions & involves the loss of my executive skills, low attention span, and some other stuff, that is hopefully reversible.
So there you have it. Simple, right?

Yeah, right! So, basically...I am always in pain. Sometimes it’s not so bad—I can function like a fairly normal person. Yesterday & today the pain just about takes my breath away. Some days I can walk like a fairly normal person. At other times I must rely on a cane to get around; other times it’s a wheelchair; at others I just stay in bed or sit in a recliner. Sometimes I shake. There is always a tremor running through my right leg & often in my left hand. My eye twitches. I don’t notice it so much any more—it’s just one of those things.

Too much stimulus (like a large group of people all carrying on conversations or my precious nieces & nephews running around playing) can make me feel overwhelmed and on edge. Sometimes I can read or watch a movie; on other days I can’t concentrate on anything for more than a couple minutes at a time. I now feel blessed when I’m able to read—it’s always been one of my favorite past-times & I hate it when I am unable to do so.

On really bad days, it takes everything in my power to try to concentrate on anything other than the pain. Trying to take part in a conversation takes every ounce of power I have.
As I said in this post, thank God for my mom...I couldn’t make it without her! So, today, being one of those not so great days, means that this post may not make sense or read smoothly. But at least you know why!

In order for this to not be totally depressing, how freakin' cute is my niece?!?!

And guess who is now eating peas??


  1. I can't believe she's already eating "big girl" food. Please stop her from growing so I can meet her as the adorable baby I see her as now. Okay? :)

  2. Thank you for laying this all out Mary! (and yes, it did read smoothly!!!) I had to read it twice tho as I have no experience or knowledge surrounding this.... I hope you found quiet rest yesterday and that your today is better. Thank you even more then ever for including Ava in your world for this time... please know she has NO problem with down quiet time! She has it here at home all the time!! Sending you gentle hugs for a good rest of this week! XXOO


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