Never Giving In!

Hi again! Well it’s been a few days since my last post but I needed to take a bit of a break! The last week or two have been getting tougher to manage and it’s probably because things are so crazy around my house. The added stress hasn’t been easy as of late, and to make matters worse the last few days have been filled with even more stress. Not only is my basement torn apart due to the flood that we had, but my youngest daughter has been really sick. Two doctors and an emergency room visit and she’s finally on the road to recovery!

After a week my daughters cold started getting a lot worse. With her pediatrician being away I took her to a walk-in clinic where two doctors told her she was ok and sent us on our way. I knew full well though that she wasn’t and that she needed to be on antibiotics. It wasn’t until I got her to emergency that the doctor told me that she had a ragging secondary ear infection. After spending several hours at the hospital we were on our way with the medicine she needed. One day later and you can already tell she’s feeling better! This brings me to what I wanted to talk about with today’s post. Like what happened with my daughter, the same happens to people suffering from CRPS or chronic pain. To often sufferers are told there’s nothing wrong,  and that there’s nothing that can be done about their pain.

If you ask someone who suffers from CRPS about their diagnosis, most would say that they’ve had some sort of trouble getting a doctor to take them seriously when it comes to trying to get to the route of their pain. The phrase “it’s all in your head” is all to common for most of us who deal with chronic pain. Half the battle is trying to find someone who knows something about chronic pain, and if they don’t caring enough to put you in touch with someone who does. That can be very difficult and time is against you when your dealing with CRPS. It’s getting better and chronic pain more doctors are learning how to diagnose and treat chronic pain but there is still a long way to go.

It’s frustrating when I think back to the number of doctors I had to visit in order to get to someone who could diagnose me. It shouldn’t have taken me flying to another city half way across the country to get my diagnosis, when the ultimately the doctor I had to see was right here in my city. I don’t want to come across negatively but this is what happens all to often and this is what has to change. What I’m pleased with is that over the last few years this has really started to improve and early diagnosis seems to be getting better.

The message I’m really trying to convey in all of this is don’t let someone tell you your pain isn’t real! Keep knocking on doors until you find someone who’s going to listen and help you. There are lots of great doctors out there that do know and care about those of us dealing with all of our chronic pain. It’s just like this latest scenario with my daughter, I kept going back until someone would listen and final I found that one doctor that would. Don’t give up and stay positive!

2 Replies to “Never Giving In!”

  1. Yep!! Agree 100% with this, Ross. It took me over 18 months of seeing all kinds of specialists, including a very arrogant neurologist (who basically told me it was all in my mind). That neurologist charged me $600 for an initial consultation and $400 for the 2 after that!!
    My new neurologist is one of the top in the state; she took me seriously from day 1, sent me for all manner of tests to eliminate all the really nasty stuff and charges much less than half the fees of the previous one. She also communicates with my GP (of course), my Musculoskeletal specialist & my rheumatologist. All my medical team are great and respect the part each one plays in treating my many conditions (AS, Heart conditions, the central pain syndrome and a couple of new ones).
    Those 18 months of looking for answers for the chronic pain that wasn’t associated with my AS but from the car accident were horrible as I know you can totally relate to!
    If it wasn’t for my husbands insistence, I would have given up totally after being sent on my way by the first neurologist with the “there’s nothing wrong with you”.

    And the way we discovered the Musculoskeletal specialist was nothing short of a miracle. (I’m not sure if I told you this story??). Michael was looking at getting a smaller more economical car, and while talking with a receptionist at a car dealership, he mentioned that he was looking for the same model car that I drove. She asked why that particular car? They are hard to come by second hand as people don’t usually trade them until they are really old and so there aren’t many second hand with low kilometres. He explained how the company who fixed my car (and the tow truck driver) had said that if I had been driving any other car, I would have lost the use of my right leg entirely. Their discussion lead to her asking if I was alright and he said that I had muscle & nerve damage. She then told the story of having a car accident herself and discovering this particular doctor who gave her answers and a new cutting edge treatment, etc.
    While I had given up totally after exhausting every avenue (medical and otherwise)… my husband hadn’t!

    Sorry for the long comment but you are one of the only people I know who really gets this!

    Hoping you’re doing better… When is the surgery to move your implant?? The abdomen sounds like a much better place!

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