Sikcell: People living with Sickle Cell

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Pain sensativity

Hi all,

Just got out the hospital like two weeks ago. I had been trying to ignore that I was in the weirdest crisis of my life for probably about 3 or more weeks until it got to a point that I needed medical attention. I don't know how many of us just try to keep going like all is normal when our body is saying something else...

any way.. I ended up with getting an exchange, 2nd time in my life... and I guess it was good, it stopped my constant head aches well at least for a little while.. they are coming back... no biggie for me...

well to cap off my weirdest crisis, i had the scariest experience while in the hospital, it even scared the med staff ... so for all those out there, I will say its not over til its well over even when it is a scary road there is light at the end... I believe as an adult you need to know that even when you are alone with your disease and it seems no one else understands, there are people out here going through it too and you have aplace to let it out when your family just can't understand.

so thank you to all those who read this and especially to those who comment.

But I really started this to ask about PAIN!!

that 4 letter word that you wish would just disappear...

I have, over the years, realived my threshhold for pain has increased, that number scale is a fail for me beacuse a pain that should be a 6-7 is tolerable... so i have to learn my own pain number system all over again.

however i believe that though my pain tolerance for crisis pain has increased my threshhold for "normal" life bumbs and bruises, horseplay and accidents and anything else in between and outside of being a crisis has decreased.

has anyone else experienced this? i am curious, cause i want to know if it is something i can get over or work towards ending or do i just have to get used to it and slowly increase my "normal" threshhold all over again.

just wondering what others are going through....

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Permalink Reply by Tamekia Cardell on August 12, 2012 at 3:17am

Its good to know you are feeling better . I do not know your level of pain n that is what scares me because ill never be able feel what my child may feel. Finding this sit & being able to read what others have to say has really helped me.

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Permalink Reply by stephanie eccles on August 13, 2012 at 12:41pm

thank you. I understand your concern, u wont know how much but u will know when they are in pain. The best thing is tha tyou are aware of the diagnosis so you can be proactive and not necessarily reactive you know. I wish you all the best in your life with your family, you already show how much love there is by participating here. I suggest you find a support group in your area that helps parents as well as children cause you will all need it as time goes on.

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Permalink Reply by Caitlyn Territa on August 31, 2012 at 1:58pm

I'm not sure if I am understanding your question that well but... if this helps...

I think, just like "normal" tolerance for pain, we all have our own tolerance for scd crisis. I feel like this because, my sister and I both suffer with this disease and we both can relate to eachother on how BAD the pain can get but at times it seems like she suffers with it a little worse then I do. Growing up she was always in the hospital more then me, and seemed like she didnt recover as fast.

Our bodies are different and your body will tell you when you can't bare it any more. Don't feel bad if you need the meds or need more meds to get some relief... sometimes the people around us(even some nurses) really don't get it and think that we're just drug heads getting addicted to the meds but I know thru experience the pain is THAT bad!

I'm still trying to find a way to handle and control how I deal with my pain, and I pray you find yours.

Hope this helps... God bless!

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Permalink Reply by stephanie eccles on August 31, 2012 at 4:19pm

Thanks Caitlyn,

I guess I was talking about non crisi pains... at times it seems that I am hyper sensative to a stubbed toe or poke in the arm and then when it comes to my scd pains I can sit with them up until like a 7 on the 0-10 scale. The same with head aches... they dont bother me until they are migrain status, but if you were playing around and hit me in the arm it would feel like you slammed a house into me...

seems weird to me, so I was wondering if anyone was going through anything similar.

I am sorry to hear about you and your sis, its nice to have someone so close understand what you go through too and how you feel but I wouldn't wish it on anyone... I hope you two are well and continue to be well...