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Comment by *Shawnii* on June 12, 2010 at 12:54am

Im like majority of the others...my pain resides in my back, legs, and arms. I am 22 now so pain is something that i have learned to deal with, thankgod! But I know when I was 16 and in pain, laying down and rubbing my legs was all i wanted to do. Its hard when you are younger because its more of a mental thing then a physical thing. The best advice I could give is to simply do what youre doing, and thats be there for her. Its so much easier to deal with pain when you have a good support system. I know I use to go and lay in the bed beside my mom and just fall asleep. Just laying beside her eased my pain & relaxed me. (thats how she knew whenever i was sick also) As far as getting up & walking around, if she can then encourage it, but however added stress on the body only negatively affects us. I know there are times when i have sooo much pain in my legs that walking is nearly impossible & it adds so much stress to the situation when i do have to walk/move. Reading definitely helps at times like that....and increases vocabulary! (& my teachers wonder why I was so smart!) :0) Hope this helps!!

Comment by Veon A. McGlory on April 28, 2010 at 3:40pm

Well mosst of my pain is in my Spine whent i go into crisis and my chest starts hurting. This is a suggestion but it works for me when im in pain get her a coloring book whatever type of coloring book she wants, and have her color she may say thats for babies i said the same thing now whenever im in pain i color and it takes my mind off the pain!!!!!

Comment by Ade Dotun on April 13, 2010 at 2:03pm

yea the most of my pain is also usually my back and knees, other times its mostly like all of my joints all aching simultaneously, so u cant even pin point where the pain is for real

Comment by Sickle Cell Warrior on April 8, 2010 at 7:46am

Gabapentin is safer than the narcotics we take. The only thing is that if she has to take her dose when due, she can't miss a dose or she will have more pain. How old is your daughter?

A crises is very hard on the body, I want to lay in bed when I'm sick too. The one thing that I force myself to do is take a shower, everyday, regardless of the pain. This helps me feel refreshed and rejuvenated...and clean! even if I am still hurting or go back to bed. You could also set her up in the family room or living room for a few hours during the day so she can interact with the family and is not just behind closed doors by herself.

Moving around during a crises is the hardest thing. I do not leave the house, and only go to my bedroom, bathroom and sometimes to the living room. She is fighting pain, and other parts of the house might be cold and cause more pain.

Comment by Chaznee N. Brown on April 7, 2010 at 5:05am

Hi Sharolyn,

I too have pain in my legs and lower back mostly, but there are times when it just takes over my body. I have to agree with everyone else that as a person living with sc you really do have to learn how to push through the pain. Your daughter probably already knows that but sometimes hearing it from a loving encouraging person such as mom helps a lot. I must say that you are an awesome parent for wanting to find out more and talk with other individuals with sc for help. I wish I could say the same for my parents. I would have crises and my parents would just say relax, take some tylenol, and lay down. I would scream because the pain was so bad and yet my parents thought nothing of it. No trips to the ER...no nothing. I must say that the Lord truly had me under his wings when those moment arose. As far as the the depression goes, I would agree with Kim in regards to that. I am sure your daughter very well may be depressed and without the proper help and interventions it could take over. This is not to scare you in any way but just know that we all go through it. I know that feeling all too well and I didn't even know what depression was until I became a psych major in college and looking back over my life I realized that if my parents had educated themselves more on the disease and all that comes with it I do believe things would have been different. I am now 27 years old and i've been successful inspite of all that I went through and continue to go through with the disease but if I didn't teach myself to push through the pain I wouldn't be here now. So as a mother continue to encourage your daughter as I am sure you do. Tell her that she's not alone, push through the pain, and focus on getting well. Just my two cents...I hope the both of you are doing well. Peace & Blessings.

Comment by Nana007 on April 1, 2010 at 11:16pm

I get pain in my legs and back. The pain in my legs can be really bad but sometimes if I walk around a bit It eases some. The pain in my back is the pain that usually is the worst. Its weird I can tolerate a higher amount of pain in my legs than I can in my back.

Comment by Kim Davis on March 29, 2010 at 8:28pm

My prayers are with you and your daughter, my sister.

Your daughter is not alone in this battle. I have always experienced most of my pain in my legs as well. Likewise, so has my sister, who is 38 and also has SC.
I am 40 years old and along with sickle cell SS I also have lupus. The whole leg/joint pain thing is quite familiar to me.There is not a day that goes by that I am not in some sort of pain. Honest. BUT, over the years, I have learned how to manage...and by manage, I mean push beyond...the pain. It is imparative, in my opinion, for your daughter to begin building her tolerence for pain. I realize that it may sound utterly ridculous to your daughter - it took me a while - and she very well may not be able to phathom actally getting up to do anything when she is in pain...especially if she can hardly walk...I get that.It is hard but it can be done. We are only limited by our thoughs about our limitiations. I have and at times still do, force myself to move about when I am hurting. Sure there are times when the pain is just too much, but for the most part I keep it moving.

As far as the depression, you are more than likely correct in your assessment. There is a great chance that she is depressed. It comes along with the territory. Being 16 with an ailment that interrupts your life at the drop of a hat, that you know will happen again without your permission and at any given moment is hard...extremely hard...to accept and deal with. All you want at that age is to fit in and here's this vicious disease that clearly separates you from your peers. It sucks! You feel alone and helpless. Depressed.

My advice is to deal with the depression before it begins to deal with her. Mental and Spiritual strength is key to aiding us in maintaining physically. She may not be able to identily her feelings to you or anyone else for that matter, but I think its important that she captures them. Try to get her to acknowledge and name her feelings as best you can. You may want to get her a journal and encourage her to write about all of the things she can't speak of. I started keeping a journal at 14. I still do to this day! Its my Peace. Its my Sanity. Keeping a journal helped me tremendously while I was laying around sick and feeling sorry for myself. I needed to dream. To hope. To record my fears and my dreams. I needed to be distracted from my present reality. I even brainstormed on a few things that I could do to take better care of me. That down-time is no joke!

Trust me. I know that all kinds of things run across your baby's mind constantly and a journal is a really good way to channel those thoughts and resconstruct them positively.

The medication is not a subject that I can speak on intelligently as I am not a fan of taking pills for this that or the other. HOWEVER, If you read the side affects and can determine if the benefis outweigh them, AND, if your really believe that it will help, give it a try. It very well may work, but do your research thoroughly. I wish I knew more :-(

Again, you are both in my prayers. You can reach me outside of this forum, if you'd like, at kmoniquedavis@yahoo.com

Comment by Sharolyn Hutchinson on March 29, 2010 at 6:20pm

My daughter is 16. The dr did say she needs to get up and move around. I will try this. She does receive home instruction when she is out. Thanks for your help!!!!!

Comment by Tahira Givhan on March 29, 2010 at 6:10pm

Hey How old is your daughter? Most of my pain is in my legs as well and I get terrible headaches! Sometimes you may just have to make her get up and used to moving around. Thats what my mom does. ts hard at first but then you kinda get into the swing of things and adjusted after a while. I've learned to push through the pain or else I would never get anything done. As far as that medicine I don't know anything about that. I'm on hydrxy so I wouldn't be a good person to ask about gabapentin. She might want to consider being homebound during the time she is out sick for weeks at a time! That helped me ALOT after I got my gaulbladder removed. Hope this helps! <3