I'm sorry to hear about your daughter's situation. I am in a similar situation, and my mom has moved in with us to help with whatever needs to be done.

I can tell you that what helps me the most is just talking to her, having her tell me stuff about my childhood that I didn't know. She has so many stories that I had never heard before (I'm 48).

It sounds like you've gotten a lot of the things that I do when the pain lessens, so I don't have any other ideas other than talking to her.

Good luck, and best wishes.

when i see girls her age in a mall worrying about their hair/ make-up or what ever..i think i wish my daughter had these problems..she goes very few places and when she does it is in a wheel-chair and it is a fast trip because she can't sit up for very long...it just breaks my heart...especially when i can't help...when i was her age i was married with 1 child...she will probably never have children because of these health issues she has...she graduated with a teaching degree and has never used it yet...i am sorry to hear you are also in pain...health is so very important...i am glad your mom helps you....best of luck to you and your family...

I can't imagine the pain that you must feel, seeing your daughter in that much pain. I know that if anything happened to my kids, I would probably die. If you ever need to talk, I am here for you.

Love, and in reality the meds are all questionable, but If she is-not on morphine Then a Fast,Enduring Physio Plan and Morphine, might help?

i am so sorry to hear about your daughter she is so young, after reading your profile it seems you to have a lot of pain and it touches my heart that with everything you have you are still worried about your daughter

that is a true mother

i think you are on the right track trying to occupy her time with the crafts and stuff

life is what it is and you are doing well if you are worried, contact someone in the health field that can give you some goals at getting your daughter to the point that she can go out with friends and to the mall

it may be a long road but i believe with goals there is hope and sometimes that is all you need to g up in the morning

good luck and you will be in my thoughts
Manny

thank you for replying to message....i can live with my health issues but to see my daughter it is just too much for me....moms' just are supposed to fix their children's boo boos...when she was younger i could kiss your pain away but now......i just want to see her live a normal life..whatever that may involve....she hasn't even began to live yet......everyday it is the same thing...wake up pain....nap pain...go to bed at night pain......this is no way to live....i am glad i found this site...i know the encouragement i receive here will help both her and i...i have been struggling with myself as to want i can do for her..i will try anything...i have taken her to many, many specialists, in ohio west virginia and in pa....there has to be a answer to everyone who has to live this way...it is so very sad...i think she is taking this better than i could ever do...how can a person be in constant pain and not be depressed about it....thank you for the advice..i wish everyone a pain free day and i will say a extra prayer for everyone on this site....i told my daughter with her, her dads' and my health issues we couldn't even make up 1 healthy person if we put all of our body parts together...i am pretty sure the glue factory wouldn't even buy us...have a nice day everyone.....THANKS AGAIN

hi honey i am in pain 4 years now after work injury i live with my family that supoort me too but got beautiful friends in here that keep me insane i admiring u for being so great mother to ur child i work with disability children that my eyes see alot lots of them left in respay alone to die until there time comes they not alot of mothers like u hon keep up the great jonb

As the mom of 4 (and a chronic pain sufferer) I found your note very moving; I can see both sides (luckily I have 4 healthy happy kids - they are part of the reason I have not given up). Here's what I find works to keep me busy (of course, I am older than your daughter) but: reading about things related to my problem, writing about it (have her join us - we can help!). I have seen beading and doing Jewelry (my sister did that when she was post-surgery) as a great thing to do. Have her friends come over. Hold her. The one thing I see that my primary care-taker (my husband - my mom would drive me nuts) does that works is not to expect me to be debilitated yet when I am, be totally OK with that. When I cry, he does not have to ask why, what's wrong, what's up. He looks at me and hugs me until I stop shaking. That he does not demand of me but gives helps. Maybe that's a good tack for you too.

I am sorry for you because it is hard to see a child in pain. I've had short experiences with that. One boy (I have 1 girl and 3 boys ages 6 to 18) had a rare disease - Kawasaki - which lasted 2 weeks and required hospitalization when he was 4. I slept in his room and was with him the entire time. At some point, the meds he got caused a severe headache. My little boy was in so much pain and I could not help him. I asked the nurses for meds, they gave him tylanor.. He had 105 and was in horrible pain. I sat with him and rocked him and cried with him. What could I do? But fortunately, he recovered and there were no post-complications (this is a rare condition with potentially serious after-effects with heart problems). So he's a happy go lucky amazing 6 yr old - he is my most effective remedy.

When I am in the worse shape, I call him and ask him to get into bed and read to me. He reads very well. He loves reading to me and thinks it's the greatest meanwhile I just look at him and my heart expands with love and the pain is better.

Does your daughter have a network or people other than you that make her feel like my boy makes me feel? He is the most positive human I ever met. No matter how irritable I get (with pain or bipolar disorder issues) he seems to totally not mind me.

I am rumbling I know but your plight touched me deeply. I am always afraid for my kids. If they have a cold, I listen to them at night to make sure they are OK. I touched their foreheads to see if their fever is under control. Having to watch a child in pain all the time is so hard. You should join a support group (or start one) for people who care for people with pain.

all of your replies have really helped me....i am over-whelmed with the compassion that came through each one i read...all of her friends have forgotten her except 1...i was even thinking about finding a girl her age to come over just to sit with her, listen and/or talk her or just watch a movie with her...(beside me-someone more her age) if she found this out she would not of been to happy but i just want her to be happy....finding this site has really been helpful...i look forward to reading all of the discussions and advice..thank you all..








could pay) to come over and

my biggest fear of chronic pain is that they will discover it is genectic somehow and my child will end up suffering too, or my grandchild/ren. Thank Goodness she has you to help her. I wish I was a magic fairy and could wish this away for everyone, especially the young men and woman who suffer from chronic pain.

my biggest fear of chronic pain is that they will discover it is genectic somehow and my child will end up suffering too, or my grandchild/ren. Thank Goodness she has you to help her. I wish I was a magic fairy and could wish this away for everyone, especially the young men and woman who suffer from chronic pain.

Dear Jean,
I am so saddened to read your post, nothing can break a mothers heart like watching her child suffer. Does she have no pain care? If she were on the proper meds, titrated to where it needs to be, quite possibly high dose opioids, her quality of life would return. Maybe not 100% but substantially. It is very difficult to get proper care for chronic pain in this country.

Undertreated chronic pain is our nation's number one public health crisis. Due to the fact that federal law enforcement now regulates medicine in this country. I belong to the Pain Relief Network, we are working tirelessly to end this epidemic of suffering, with our civl rights movement. Chronic pain is a disease and needs to be treated aggressively now, it is often times lethal.

If your daughter would like to visit our forum, she would be most welcome.

Tami PRN
http://www.painreliefnetwork.org/prn/category/mainpage

Someone asked how chronic pain isn't causing depression.

Personally. I feel that all people who have chronic pain have depression. I think it's a matter of time. Sooner or later it will start to eat you up if you let it. I am happy your loved one is not depressed and hopefully she doesn't get in a rut in the future. Stay as active as she can is the best bet and try to pace and do what she can when she can and Huggggggs