What is your frustration?

KatieZ Community Member September 06, 2007
  • I usually try to stay positive, but today has been worse than usual.  I thought I'd pop in and find out what everyone else sees as the biggest frustration in their lives with chronic pain.

      

    I am so angry that we don't have a diagnosis for the cause of my chest wall pain.  Every test seems to come back perfectly normal.  I'm tired of having nurses call and tell me that the doctor says the latest test was negative.  How does that help me?  Okay, so I don't have one of the top three diseases that everyone else who sees these doctors has.  That doesn't mean that there's nothing wrong with me!  I could have something that's incredibly easy to fix.  I could have something that only has a short window of treatment before it becomes permanent.  I could have something horrible.  We just don't know.  I do know that my body is trying to tell me that there's something wrong.  I went through this same thing before finally being diagnosed with endometriosis, and again before my Chron's diagnosis.  Nobody would believe that there was anything wrong with me then, either.  I am supposedly perfectly healthy according to all diagnostics.  HAH!

     

    Wow, that was quite a rant!  It feels good to type it out.

     

    So, what's everyone else's frustration(s)? 

     

    Katie 

11 Comments
  • Tammy  Coons
    Sep. 21, 2007
    I have a cold and a urinary tract infection and if I don't stay close to a bathroom I pee myself. My fibro is in a huge flare and my whole body is killing me. We are staying at my father-in-laws in his basement until our house sells . So far since we have been here we have had a lot of bad luck. I can't find a job so we are living on one paycheck. Our...
    RHMLucky777
    Read More
    I have a cold and a urinary tract infection and if I don't stay close to a bathroom I pee myself. My fibro is in a huge flare and my whole body is killing me. We are staying at my father-in-laws in his basement until our house sells . So far since we have been here we have had a lot of bad luck. I can't find a job so we are living on one paycheck. Our car got repossessed, our house was vandalized(and the insurance won't cover it) the awesome insurance company had sent us a notice stating that our homeowners insurance is cancelled as of October 8 because we are a risk now. We have had only two people look at the house and if it doesn't sell soon we will be facing foreclosure. So here you go this is my frustration and I think its just going to continue to get worse!
  • elaine
    Sep. 20, 2007

    My Gripe is , has been , and will always be the fact that cronic pain plays alot of havoc with my energy levels and I need to rest more. It is hard to do , when you work full time as a nessecity, and go to school at night so I can retrain for a lighter physical job.

    Cronic Pain is a Energy Theif.

    and

    another gripe is when people tell you, " you should not...

    RHMLucky777

    Read More

    My Gripe is , has been , and will always be the fact that cronic pain plays alot of havoc with my energy levels and I need to rest more. It is hard to do , when you work full time as a nessecity, and go to school at night so I can retrain for a lighter physical job.

    Cronic Pain is a Energy Theif.

    and

    another gripe is when people tell you, " you should not be doing this job with your back" I have to shake my head. How do I keep my life going without an income. DAH.

    ok thanks

     

    • Tammy  Coons
      Sep. 21, 2007
      I feel the same as you. I wish I could find a job. I am so tired all the time. I need to make a appointment with the doc to see what is going on. I am a part-time student studying Health Information Technology. What are you studying?
    • Anonymous
      elaine
      Sep. 21, 2007

      Hi , and thanks for the reply. I see I spelt thief incorrect. I am taking courses to enter into registered staff nursing.

       

  • Anonymous
    Chris, Illinois
    Sep. 08, 2007
    My biggest frustration is chronic pain due to endometriosis.  I LOVE when they say "just exercise, that will help with the pain."  And all it does is make my severe pain even worse!  It took me 9 years to get the endo diagnosis....and I don't see many options for dealing with it.  Either go on hormone medications (of which...
    RHMLucky777
    Read More
    My biggest frustration is chronic pain due to endometriosis.  I LOVE when they say "just exercise, that will help with the pain."  And all it does is make my severe pain even worse!  It took me 9 years to get the endo diagnosis....and I don't see many options for dealing with it.  Either go on hormone medications (of which I have tried many, with little or no success)....or try to control the pain (easier said then done!).
    • KatieZ
      Sep. 08, 2007

      I was diagnosed with endometriosis when I was 16.  Exercise seems to make mine worse, plus it's very hard to exercise when you feel like your insides are tearing themselves up. 

       

      I've been on too many birth control pill prescriptions to count.  The Lupron treatment ended up making me flip out--I'm not looking forward to real...

      RHMLucky777

      Read More

      I was diagnosed with endometriosis when I was 16.  Exercise seems to make mine worse, plus it's very hard to exercise when you feel like your insides are tearing themselves up. 

       

      I've been on too many birth control pill prescriptions to count.  The Lupron treatment ended up making me flip out--I'm not looking forward to real menopause.  What finally worked was the Depo shot, which I did for 5 years (two longer than they recommend).  I'm now on NuvaRing and it's working GREAT!

       

      Good luck!

      Katie 

    • Anonymous
      Chris, Illinois
      Sep. 09, 2007

      Thanks for the info Katie!  I had some success on the Depo shot until the last time.  I actually had great success on Lurpon...aside from hot flashes...which were far less worse than the pain I had.  I had surgery in March which showed very little endo for the amount of pain I have.  I currently am only taken Vicoprofen as needed for pain. ...

      RHMLucky777

      Read More

      Thanks for the info Katie!  I had some success on the Depo shot until the last time.  I actually had great success on Lurpon...aside from hot flashes...which were far less worse than the pain I had.  I had surgery in March which showed very little endo for the amount of pain I have.  I currently am only taken Vicoprofen as needed for pain.  I will have to look into the nuvaring....that is one I haven't tried!

       

  • Jenn B.
    Sep. 06, 2007
    My biggest frustration would have to be the infamous "It's just stress/tension, you should try yoga."
    • KatieZ
      Sep. 06, 2007
      That's a good one!  I love it when people tell me to just relax.  Then I start stressing about trying to relax!
  • annebeckett
    Sep. 06, 2007

    So, yesterday, my frustration was my own situation in that I believed I was not going to have anything at all done to repair my jaw joints...Or, missing/ explanted joints.  That's being fixed for me and me only, which leads to today's frustration;

    THERE ARE FAR TOO MANY PEOPLE OUT THERE WHO WILL NOT BE GETTING NEW JOINTS BECAUSE THEIR...

    RHMLucky777

    Read More

    So, yesterday, my frustration was my own situation in that I believed I was not going to have anything at all done to repair my jaw joints...Or, missing/ explanted joints.  That's being fixed for me and me only, which leads to today's frustration;

    THERE ARE FAR TOO MANY PEOPLE OUT THERE WHO WILL NOT BE GETTING NEW JOINTS BECAUSE THEIR INSURANCE COMPANIES WILL NOT PAY ENOUGH OR UP=FRONT OR WHATEVER!

    Thankfully, most of these people, mainly women, are NOT sitting at home without joints and, I suppose, this is one reason that THIS, PARTICULAR, joint-maker will be donating my joints... But, again, there are too many people who don't have this advantage.......

    That's lousy! Anyone who has a real problem with universal healthcare, explaibn your position, please!

  • annebeckett
    Sep. 06, 2007

    I do think that what you have going on could certainly be soft-tissue damage causing pain.  In general, this does not show up on the varied tests and scans.  You know that my docs also, pretty-much, pay not one whit of attention to the thoracic outlet syndrome that makes my chest hurt so badly;  this, though the radiologists always do point...

    RHMLucky777

    Read More

    I do think that what you have going on could certainly be soft-tissue damage causing pain.  In general, this does not show up on the varied tests and scans.  You know that my docs also, pretty-much, pay not one whit of attention to the thoracic outlet syndrome that makes my chest hurt so badly;  this, though the radiologists always do point out that my thoracic scoliois has been getting worse and worse over the years.  c'est la vie... --not my biggest complaint.

    Of course, I am not a doctor, have never seen you, yada yada..

    And, you probably can guess my biggest frustration (or set of frustrations) and my biggest rants....

    Yep.  Anne

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