Monday, October 28, 2013

You Truly Have NO Idea

This is as good as it gets for me.  This is what it is - constant physical pain and the emotional pain that stems from it.  Some people have said to me that if I don't like the way my life is that I should change it.  To them I say, how can I change a disease that researchers didn't even put a  name to until 1981?  I have tried every known medication, homeopathics, supplements, acupuncture, massage therapy (both regular and pressure point), chiropractors, rheumatologists, internists ... the list goes on and on.  I have multiple chronic illnesses.  That is my life.  This is my life. 

I ask, do you honestly know what all the symptoms are for Fibromyalgia?  I doubt it.  You probably think it is occasional pain.  It is so much more than that.  Let me give you a partial list of symptoms (and these are just the ones that affect me; I'm not even listing the symptoms from chronic fatigue, myofascial pain syndrome, generalized anxiety disorder, depression, or insomnia - all things I have been diagnosed with):
  1. Delayed reactions to physical exertion or stressful events  
  2. Cravings for carbohydrate and chocolate 
  3. Headaches & migraines
  4. Vision changes, including rapidly worsening vision
  5.  Pain that ranges from mild to severe, and may move around the body
  6. Morning stiffness
  7. Muscle twitches
  8. Allergies
  9. Mold sensitivity
  10. Earaches & itchy ears
  11. Ringing ears (tinitis)
  12. Light and/or broken sleep pattern with unrefreshing sleep
  13. Fatigue
  14. Sleep starts (falling sensations)
  15. Twitchy muscles at night
  16. Teeth grinding (bruxism)
  17.  Short-term memory impairment
  18. Confusion
  19. Trouble concentrating
  20. Staring into space before brain "kicks in" 
  21. Sensitivity to odors
  22. Sensitivity to pressure changes, temperature & humidity
  23. Sensitivity to light
  24. Sensitivity to noise
  25. Panic attacks
  26. Depression (as an overlapping condition)
  27. Tendency to cry easily
  28. Free-floating anxiety (not associated with situation or object)
  29. Mood swings
  30. Unaccountable irritability
  31.  Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)
  32. Pronounced nail ridges
  33. Bruising or scarring easily
  34. Tissue overgrowth (non-cancerous tumors called lipomas, ingrown hairs, heavy and splitting cuticles) 
  35. Reduced ability to get pregnant

Quite a list of symptoms, isn't it?  I have friends who complain about the following all the time:  allergies, headaches, weight, etc.  Why are you allowed to complain about these trivial things and I'm not allowed to complain about something chronic?  

If you have allergies, you take a pill and you know that they will go away. 
If you have a headache, you take a pill and you know that it will go away. 
Break a bone?  Have it set and know it will heal.
Overweight?  Change your diet and see results.
Out of shape?  Exercise and see results.

Fibro?  Not a damn thing in the world will help.  There is no pill, no doctor, no food, no exercise, no anything that will make it better.  The pain is always, always there and it will always, always be there.  

I track my pain levels.  I chart them daily, along with weather conditions and other external factors (stress, lack of sleep, etc.).  I have done this since before I was ever diagnosed with FMS.  I can honestly say that for years now, there has not been one single day where I have been free from pain. If you look at the pain scale in the app I use, my pain is never below a 4.  Ever.  For the past six weeks or so, my pain level has been more consistently around a 7. 

0)  Pain free
1)  Very minor annoyance
2)  Minor annoyance
3)  Annoying enough to be distracting
4)  Can be ignored if you are really involved in something, but still distracting
5)  Can't be ignored for more than 30 minutes
6)  Can't be ignored for any length of time
7)  Makes it difficult to concentrate, interferes with sleep; can function with effort
8)  Physical activity severly limited.
9)  Unable to speak; crying out or moaning uncontrolably
10) Pain makes you pass out

FMS does not cause depression but you try living in constant pain every second of every day for years and tell me how great your attitude is.  That effort that it takes to function at a Level 7 of pain is emotionally and mentally exhausting.  So, please, forgive me if my status updates about my life annoy you.  Your "things will be brighter tomorrow" crap just pisses me off because I know that you have no idea what I am dealing with.  I truly hope you never, ever have to deal with the things I deal with on a daily basis. 

No comments:

Post a Comment