Creating Chronic Pain Awareness (You can help!)

Reblogged from Creating Chronic Pain Awareness (You can help!).


September is Chronic Pain Awareness Month!  Some of us (and/or our loved ones) are dealing with Chronic Pain on a daily basis.  Sadly, our pain does not end come October 1.I would like readers to share this post (if you don’t mind) and, if you would like your story included, please answer the questions below.  Be sure to link it back to Tracy Rydzy at http://ohwhatapain.wordpress.com or post it as a comment.  Also, please feel free to include the Chronic Pain Awareness logo above on your blog to let others know that you support Chronic Pain Awareness Month and the “Oh What a Pain Chronic Pain Awareness Forum!”  My hope is that by sharing our personal stories, we can create awareness of what it isactually like to live with Chronic Pain and how best to cope with it!

I have created a new page called “Creating Chronic Pain Awareness” where I will post everyone’s answers along with your name and blog address (unless you would like to remain anonymous). By doing this, I hope that we can increase chronic pain awareness and support one another on this difficult road.

Please answer the following questions:

  1. What condition(s) do you have that have led you to living with chronic pain?
  2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )
  3. Which philosophy do you ascribe to:  Keep hoping that the pain will get better or learn to adapt to life with chronic pain?
  4. What do you miss the most that you feel you gave up because of chronic pain?  What do you do now to fill that void?
  5. What have you heard from others that made you feel better? 
  6. Do you feel that people view/treat you differently? How?
  7. What coping mechanisms have you tried that worked for you?  Which ones did not work for you? (Traditional and Non-traditional)

If you would like to have your answers published, please include your name, and blog address or email.  If you would prefer to remain anonymous, please just let me know.

Please see  “Creating Chronic Pain Awareness”  to view other people’s answers to these questions.

       

Here are my answers.  Laura Hart, 28:

  1. What condition(s) do you have that have led you to living with chronic pain?

    I suffer from fibromyalgia and a bad case of TMJ disorder.  I’ve also had migraines my whole life.

  2. What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )

    Living in chronic pain sucks.  It’s hard.  It takes work to get through every day.  It’s an uphill battle I fight every day.  The best I can do is achieve a stalemate.  I never win.  Pain is exhausting and it isolates you from others.  It makes it hard to do “normal” things, even something as simple as going out to dinner.  Chronic pain is a constant presence in my life.  It divides my attention from everything.

  3. Which philosophy do you ascribe to:  Keep hoping that the pain will get better or learn to adapt to life with chronic pain?

    Learn to adapt to life with chronic pain.  I do believe one day the pain will be better, but for now I’m learning to adapt to life with fibromyalgia. I’m learning to live again.

  4. What do you miss the most that you feel you gave up because of chronic pain?  What do you do now to fill that void?

    I miss being able to do things spontaneously.  So much planning and effort is required for me to do anything now.  I can’t just decide to go on a day trip with my husband or go shopping or anything.  I have to plan everything out.  I have to conserve energy that day so I’ll have enough left over to do something fun later on in the day.  I have to build recovery time into my schedule.  Nothing is simple with fibromyalgia and chronic pain. I’m still learning how to fill this void.  I haven’t come up with a solution yet, but I’m working on it.

  5. What have you heard from others that made you feel better? 

    That others out there know exactly what I’m going through.  What I’m feeling.  I’m not alone in my pain.  My friends and family empathize as best they can’t, but they’ve never experienced  chronic pain, so they don’t really know what it’s like.  It’s great to connect with someone who is going through the same things I am and know you aren’t alone in these feelings.

  6. Do you feel that people view/treat you differently? How?

    I’m a lot less sympathetic towards people than I used to be.  For example, I used to work with someone who told everyone about the least little ache or pain she had, whether they asked her how she was or not, and she would make it sound like she was at death’s door.  This would drive me nuts as I was sitting next to here in a ton of real pain and she never asked how I was.  I was often short with her because she tried my patience so.  I feel like people don’t believe that I’m in pain because they can’t see it.  Fibromyalgia is an invisible disease.  I look normal and healthy, but inside I’m in pain.  Pain has scarred me emotional and physically, but these are invisible scars.  No one sees them but me.  I also feel like I’m treated as a drug addict.  If I go to a new doctor’s office, the nurse takes my list of medications and he/she gives me the “look.”  The look that says you’re here to scam the system and get drugs.  You’re not really sick, it’s all in your head.  Just because others do this, does not mean I should be treated like a bad person.  It’s not fair. I get a similar treatment at my local CVS.  I have to promise them every time I’m picking up my meds that I’m following doctors orders and I really am supposed to on all these things.  It happened again yesterday, when I was in near agony from the storms that just came through, and I lost it.  I snapped at them and said I’m asked this all the time and I tell you the same thing every time.  Why can’t you stop asking me?  They said they’d add a note in the computer.  Yeah right.

  7. What coping mechanisms have you tried that worked for you?  Which ones did not work for you? (Traditional and Non-traditional)

    I’ve tried everything I could think of.  Here’s what works for me:  acupuncture, EMDR therapy (more intense than traditional cognitive therapy), osteopathic manipulation, journaling, coloring, relaxation music, yoga, meditation, daily exercise, stretching throughout the day, deep breathing exercises, relaxation exercises, Qi Gong, writing my blog, playing with my dog, massage therapy, sleep, naps, ice packs, heating pads, orthodontics, and a combination of  pain meds, muscle relaxers, Cymbalta, and Klonopin.  What doesn’t work for me:  physical therapy, over or under exercising daily, ignoring the pain and hoping it will go away (never works), getting in to a routine (impossible for me as every day feels different), working full time (impossible), traditional talk therapy, steroid injections, steroid treatments, any Acetaminophen-based pain meds (Loritab, Oxycodone – I’m immune to them), and not being honest with others about what I’m going through.

Please share your answers with me and link them back to http://ohwhatapain.wordpress.com

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9 thoughts on “Creating Chronic Pain Awareness (You can help!)

  1. […] Creating Chronic Pain Awareness (You can help!) (painfighter.wordpress.com) […]

  2. Reblogged this on Strangled Thoughts and Random Musings and commented:
    Living with fibromyalgia and osteoarthritis for the last 15+ years….

  3. […] Creating Chronic Pain Awareness (You can help!) (painfighter.wordpress.com) […]

  4. […] Creating Chronic Pain Awareness (You can help!) (painfighter.wordpress.com) Share this:TwitterFacebookLike this:LikeBe the first to like this. This entry was posted on September 6, 2012, in Patient Advocacy, Treatment Modalities and tagged Analgesic, chronic pain, Dilaudid, Fibromyalgia, Health, Hydrocodone/paracetamol, Hydromorphone, Medical Specialties, Medicine, Opioid, Pain, Pain management, Vicodin. Bookmark the permalink. Leave a comment […]

  5. Tracy Rydzy, MSW, LSW says:

    Thank you for your responses! I put your answers on the Creating Awareness Page! Thanks for your help!

  6. […] Creating Chronic Pain Awareness (You can help!) Share this:More Posted in Raves, Tags: fibromyalgia, National Fibromyalgia Association « READ HUMANE – Penguin Group (USA) […]

  7. […] Creating Chronic Pain Awareness (You can help!) (painfighter.wordpress.com) […]

  8. […] Creating Chronic Pain Awareness (You can help!) (painfighter.wordpress.com) Share this:TwitterFacebookEmailLinkedInPrintLike this:LikeBe the first to like this. […]

  9. […] Creating Chronic Pain Awareness (You can help!) (painfighter.wordpress.com) […]

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