Hello,
My 8 year old daughter was just diagnosed with CRPS two days ago. I am beyond worried. She has been in constant pain for the past 2 months. Our pediatrician said that he could find nothing wrong with her and said that she was engaging in drama. Her injury is on her shin and I had to get crutches so that I could stop carrying her. He told me to take away the crutches and tell her to get on with it. I was lucky when a neighbor happened to see her and recognized her symptoms. She knew that name of a specialist and my daughter was finally believed. She cries in pain every night until she passes out around 2, 3, or 4 am. Therapy starts next week, but I can't imagine having her go through this another day. We live in Connecticut and her specialist is affiliated with CT Children's Medical Center. When my child is in pain how can I sleep?

She was taking melatonin...This helped her with sleeping tremendously, but her doctor took her off this and added Amitriptyline for pain. It does not help her sleep and she is in pain. She has been on this for two days. I'm so worried!

Hi, and welcome. Sorry you are in a situation that brings you here, but you came to a good place. Have you found our forum specific to RSD/CRPS issues? If not, here is the link:

http://neurotalk.psychcentral.com/forum21.html

There will certainly be someone here who can relate and perhaps give you some advice. Don't get discouraged if you don't get a pile of responses all at once--sometimes it's a little slow around here on the weekends!

Browse through the other forums here as well, and feel free to jump in anywhere!

I'll be praying that your daughter willl find some relief SOON! Poor little thing.

Sometimes what gets me through is thinking when MS and some pain bothers me is at least I'm 56 and it's not one of my kids. A Mom I knew whose 5 year old had pain from her disorder "I would gladly bear the pain for her", but she couldn't. But she sure meant it.

For me it took some time but a "cocktail" of meds helps me sleep. Nortriptyline (another tricyclic AD) and Vicodin. I avoid computer at night as light from screen can mess up circadian rythem. I read, but avoid anything suspenseful or stressful, often re-reading old favorites. It takes time and tweaking. With these sleeping before 2AM is my goal, but I need to stay up instead of trying to sleep when not ready. I still get break-thru discomfort.

Hello.

I read your post. Please know that your daughter is very lucky to have such a loving mother. People are giving you good advice and hopefully you will eventually find some answers.

All I can do is tell you that you and your family are in my prayers tonight. Try and stay strong. And that doctor who told you it's drama? Well shame on him.

Sending warm thoughts your way.

Melody

Mom,

Hello and welcome each of you to NeuroTalk. Happy to see you have come to be with us. Here are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Sorry to hear about your little one. Looks like Blessings2You has given you a good place to start with. Give her a great big hug for me, please keep us up to date on your condition.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi Mom Needs Help!!!

I am sooooooooooooo sorry to hear about your daughter!!

I know 1st hand how your daughter feels. I too have CRPS...you will also hear it called RSD. (Please know it's all the same just called different names by different people and different doctors)

I have RSD for over 8yrs. I have it from head to toe!!! Please know your daughter's pain IS REAL!!! It is the worst pain I have ever felt.

I recommend finding a good Pain Management Doctor/Neurologist/Anesthesiologist. I have heard that it is easier to put RSD/CRPS into remission in children than it is adults.

You have caught your daughter's early!!!

Here is the link to our RSD/CRPS forum:
http://neurotalk.psychcentral.com/forum21.html

You will find a wonderful, kind, caring group of people there!!! They are full of knowledge and are willing to share all they know and helping is their loving gift to other RSD/CRPS patients and families.

I sincerely wish you and your daughter the best.

Abbie