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Have you ever noticed that no matter how much medication they give you, your pain is always a 8,9 or 10? It's because they always treat you with narcotics. Instead of finding out what kinda pain your experiencing. Sometimes you have nerve, bone, or joint pain in which narcotics don't work. Have the Dr find out what kinda pain your having. Ex: burning = nerve pain.

  1. thank you for sharing this.. keeping this in mind.. I hope the doctors listen to me.

    1. Actually my adult son has Sickle Cell. Before covid I was known as the mother who would(byob) bring your own blowup bed. Even though they don't want to listen to us, I make sure we are heard. I feel that all Sicklers need someone to be with them especially when they go to the ER. I am my son's advocate. One thing that helps is when on the pump get a continuous dose along with the push. When you're sleeping you get no medication at all and wake up worse. I brought up the subject of the different types of pain. Why the narcotics don't touch certain types. My son is 32 I have learned a lot and won't be silenced.

      1. sounds like you were a great advocate for your son! Do you do any other advocacy work? Would love to hear more of what it's like raising a son with sickle cell. You can submit your story/ experience here, alone with reading other stories submitted by the community: Hope your son is doing well now and has supportive doctors. Warmly, Elizabeth

    2. thank you so much for your post. You bring up a really important issue about pain medication. Do you find that your primary care doctor asks more questions about your pain to find a better solution? Is there anything that does help with your pain? Definitely want to learn more about this issue. Thanks, Elizabeth ( team member)

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