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Have you ever played Boggle?  It’s a timed word game.  The premise is that you shake up the letters that are attached to a plastic holder and then you have three minutes to make as many words as you can, but the letters have to all connect.     The definition of boggle is 

mind bogglingBog.gle verb. informal.  (of a person or a person’s mind) be astonished or overwhelmed when trying to imagine something.

All of the letters being thrown around in the medical community, is truly mind boggling This person has  C F S.  This other person has M E.   Someone else has R A  and F M S.  And they all are affected by the C N S  can cause  R P,  T M J, and I B S.  But the recommended therapies are C B T and G E T.   They are all P I A and are generally caused by C S S.   In the end the whole problem is P A I N!  Quick get out your secret decoder ring and I’ll give you the answers after a word from our sponsors. { (c) A Christmas Story}

Many of my blogging community friends post about all of these different things.  And after reading their posts, it really does seem like each person is describing almost the same thing because of the symptom overlap that I have noticed.  So I decided some research was necessary. A dear blogging friend of mine, Dawn @ Dawnyhosking,  recently posted about adding another three-letter diagnosis to her C F S/M E/F M S.  (Sorry, Dawn, it’s 5 am here and I can’t find the post about what the actual newest diagnosis is, and I don’t want to lose my productivity and focus searching for it.)  This got me thinking that I am not really sure about what it means to have all of these diagnoses and I would like to understand her – and others – worlds. I found a few very interesting and helpful articles.

But first,  get out your secret decoder ring. I will give you the answers to all the letters zinging around.

  • C F S = chronic (lasting 3 months or longer) fatigue (a feeling of weariness, sleepiness, irritability, or loss of ambition) syndrome (A group of symptoms that collectively indicate or characterize a disease, psychological disorder, or other abnormal condition.)
  • M E = myalgic (pain) encephalo (inflammation) pathy (inflammation of the brain stem)
  • R A = rheumatoid arthritis (the thickening of the connective tissue affecting many joints, including the hands and feet, which can become eroded, causing swelling and pain)
  • F M S = fibro (muscle) myalgic (pain) syndrome (A group of symptoms that collectively indicate or characterize a disease, psychological disorder, or other abnormal condition.)
  • C N S = central nervous system (the brain and spinal cord)
  • R P = Reynaud’s phenomenon (cold hands and / or feet with seemingly longer periods of time to feel warm)
  • T M J = temporal mandibular joint disorder (pain, clicking and misalignment in the joints that connect the jaw to the skull)
  • I B S = irritable bowel syndrome ( a condition characterized by gastrointestinal signs and symptoms)
  • C B T = cognitive behavioral therapy (a broadening of behavior therapy to include consideration of cognitive processes and use specific techniques for teaching cognitive skills that help the patient adaptively perceive, interpret, and respond to the environment)
  • G E T = graduated exercise therapy (start with small increments of exercise and gradually work up to longer periods of continuous exercise)
  • P I A = pain in the  …   all-over 😉
  • C S S = central sensitivity syndromes

Central sensitivity syndromes.  Finally an all inclusive explanation to what’s going on with myself and some of the other bloggers in the chronic pain community.

What is a Central Sensitivity Syndrome?

An illness described as a CSS  involves central sensitization. “Central” refers to the central nervous system, which is made up of the brain and spinal cord. “Sensitization” describes the end result of a process that leaves someone sensitive to a particular kind of input.  In a CSS, we become sensitive to the things that are processed by the central nervous system, which can include bright lights, loud noises, strong smells, rough textures, and pressure on the body. It may also involve certain foods or chemicals. The body is sensitized to anything unpleasant, called “noxious stimuli” by researchers.

Aside from FMS and ME/CFS, the following conditions have been proposed to be part of the CSS family:

  • Chronic pelvic pain, including vulvodyniacentral nervous system
  • Certain Forms of Chronic Headache
  • Idiopathic low back pain
  • Interstitial cystitis (painful bladder)
  • Irritable bowel syndrome
  • Migraine
  • Multiple chemical sensitivity
  • Myofascial pain syndrome
  • Primary dismenhorrhea (painful period)
  • Restless legs syndrome
  • Temporomandibular joint disorder

The articles I’ve read describing the symptoms are  interesting and eye-opening as far as how similar we pain sufferers are.  But first, let me point out some of the small differences I have found.  The common thread with all of these diagnoses is pain.

C F S

Central fatigue syndrome was a recognized diagnosis by the medical community in the 1930’s.  extreme fatigueIt affects 1 in 300 people in the U.K.  C F S can affect anyone, but is three times more prominent in women ages 20 – 40 but can be found in teens aged 13 – 15.  There are no tests that can find C F S. It is found by ruling out other things.  There is no cure and the common recommendations for treatments of the other related symptoms are pain killers, c b t, g e t, plenty of rest and avoiding caffeine, alcohol, and processed sugars – as they my make the symptoms worse.    The prominent difference in C F S  that is not found in any of the other conditions listed is that the fatigue is the more prominent symptom over the pain and other related symptoms, and it can be debilitating.

F M S

pain-attitudeFibromalgic Syndrome was a recognized diagnosis by the medical community in 1977.  It affects 1 in 50 people in the U.S.  F M S can affect anyone, but is four times more prominent in women ages 20 – 40 but can be found in teens.  There are no tests that can find F M S . It is found by ruling out other things.  There is no cure and the common recommendations for treatments of the other related symptoms are pain killers, c b t, g e t, plenty of rest and avoiding caffeine, alcohol, and processed sugars – as they my make the symptoms worse.  The prominent difference in F M S  that is not found in any of the other conditions listed is that the pain  is the more prominent symptom over the fatigue and other related symptoms, and it can be debilitating.  Also there are 18 pressure points through out all four quadrants of the body, that are painful when normal pressure is applied, 11 of the 18 must be present for a true diagnosis.

M E

Myalgic encephalomyelopathy is often co-diagnosed with C F S.  myalgice encepholophathyM E was a recognized diagnosis of the medical community in 2002. It affects approximately 1 in  200 people in the U.K.  Statistics that are separate from C F S are hard to find because of the general practice of the co-diagnosis with C F S.

R A

Rheumatoid Arthritis was a recognized diagnosis by the medical community in 1896.  It affects 1 in 28 women and 1 in 59 men each year.  The statistics weren’t clear as to the specific location of the data. Anyone can get this disease, though it occurs more often in women. Rheumatoid arthritis often starts in middle age and is most common in older people. But children and young adults can also get it.  There are no one specific tests that can find R A. To diagnose rheumatoid arthritis, doctors use medical history, physical exam, x-rays, and lab tests.

So basically, all of these different diagnoses and their symptoms have to do with either injury, infection, or inflammation of the central nervous system.  We are all affected by and are fighting together against the pain pixies (name credit to Dawn – the fibro warrior herself).  Because the medical community is recently recognizing the link between many of these diagnoses and it is slowly realizing symptoms of specific diseases, I don’t think that adding another three-letter diagnosis to an existing one is necessarily a bad thing.  I think the doctors now are finally starting to be more whole person minded – rather than single symptom minded.

pain pixies

 

 

 Here are some more articles related to this research and information:

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