SCT and living with constant pain. - Living with Sickl...

Living with Sickle Cell Disease
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SCT and living with constant pain.

I have suffered with chronic pain for as long as I can remember maybe 5 or 6, my little crisis always begin with mid/lower back and leg pain from my bones. My legs, my back, my stomach ( my stomach daily but especially if I forget to eat), usually much worse when I would exercise or when I'm pregnant (which i am now). At one point, 9 years ago, I had a rotating Rx for both Vicodin and Percocet, which I stopped taking because it made me sick and I couldn't care for my children.

Here I am 33 years later and medical "professional" are still trying to tell me my pain is not related to SCT. I'm in over all good health and other than SCT they can't find a cause for my suffering.

Over all I eat well, more fruits and veggies than starch and meat, I drink roughly a gallon of water a day sometimes more. Tylenol and Motrin do nothing for my pain. I take 6 sometimes 8 pills at a time (as I refuse to take anything strong or deadly) I consume marijuana and that helps SOOOOOOOO MUCH, almost killing the pain completely from an 8-2 on the pain scale, hands down.

My question:

Are there any doctors out there taking us less severe SCT carries seriously. I'm tired if living in pain. I'm tired of my bones and muscles feeling like "aaaaaghhhhh 😨😨😨😨😡😡😭😭". I'm tired if needing to "take my medicine" every 2-4 hours (depending on level of pain) I have 6 children 7th on the way and I spend half my time telling my children "mama can't play she hurts today." I want to be free of this pain. Are there any studies to help us SCT patients out all the focus is on SCD and I don't think anyone realizes how much some of us SCT patients suffer daily, too.

I'm tired of hurting. Can anyone help?

1 Reply
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Hey PrachersWife1980,

I'm the same way, I have SCT, I was just admitted to the hospital, they gave me dilaudid thru the IV 2x's down in the ER, only for them to switch me to 1 tramadol every 8 hours, which I was pissed and in constant pain for hours, I cried literally until I had a headache, I just walked out the hospital becuz the dr told me that they have no proper diagnosis to give me pain medication, I was so hurt becuz I feel like if those Dr are in noooooo pain they dont know what it feel like, and everyone says that I'm just searching for attention, it hurts so bad, I'm up now and its 2:12am I'm rocking, trying to hold on until I go to my pain management in the morning, over the past month, I've fractured or hv neen diagnosed with hip displysia from falling becuz I'm too weak to walk my bones just collapsed and I'm just tired of being in pain suffering!! We need help really bad!!

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