December 09, 2012,
B.P. asks from Charlotte, NC on April 15, 2008
Daughter Who Says She Hurts All the Time
My daughter will be 5 in July. For over a year now she's been complaining of pain in her legs. She will wake up at 5 am crying that her legs hurt and she starts throwing herself around. She kicks them and rubs them. She tries walking it off. Nothing helps until it just subsides. At first, when she wouldn't really talk to me about it, I thought she was having nightmares. Finally about 8 months ago she told me she was writhing around in bed because her legs hurt. She says her legs hurt all the time, sometimes is just worse than other times. But it's constant and it feels like someone is squeezing her legs. I thought it was growing pains. That's what the pediatrician said. About 7 months ago she started complaining of a stomach ache every day. She says her stomach hurts all the time, just like her legs, and sometimes it's worse than other times. Took her to the doctor again. Ran some urine and blood tests, which all came back normal for whatever they were testing her for. Doctor says the legs are growing pains and the stomach is just nervous stomach (my daughter is a little anxious and worries a lot). In the last couple of months my daughter has started complaining that her whole body hurts- legs, stomach, arms, sometimes even her head. She has some really bad moments when she's crying and kicking her legs and throwing her arms about or rolled into a ball. Otherwise, it doesn't seem to slow her down, which made me question the veracity of her claim that she hurts all the time. Her response was, "Mommy I do hurt all the time, but if I just stopped doing stuff when I hurt then I'd never be doing anything because I hurt all the time."
I have noticed that at least with her legs when they are hurting her a lot they are also very cold (which is weird for her because she's always hot). We try to cover her up and use heating pads. She says it might make it hurt less, but it doesn't go away. Same with pain relieves like Tylenol or Motrin. The doctor said give her more calcium and potassium, which I've done, but it doesn't seem to make a difference either. I am at the point where I think it's more than just growing pains or nervous stomach, but I have no idea what it is or how to help her. And it's so heartbreaking to me to look her in the eye when she's telling me she hurts all over and I have no way of helping her to feel better. Any suggestions will be tried and much appreciated. Thank you.
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W.M. answers from Louisville on April 16, 2008
I would recommend calcium supplements for your daughters. Our food is lacking in nutrition horribly. My legs ache and ache all the time til I was faithfully taking a good (not Wal-mart) brand of calcium complex. Shaklee or Enzymatic is what I take now FAITHFULLY. I have had no further pains in my legs.
Also, have you googled in her symptoms just to see what would ocme up? Knowledge is power and it can't hurt just to do some googling around to see what you find.
I wish you the very best.
W. from Indiana
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A.G. answers from Memphis on April 16, 2008
Hello B.. My name is A. & I have just finished reading all of the responses that you have received.
First off, I want to say that I am not a doctor, but I am a mother & that I, personally, have many physical ailments. I was a nanny for 5 years & also a pre-school teacher. I have done LOTS of research for my own conditions.
All of that being said....first off...I urge you to listen to your intuition. Second, please be sure to tell your daughter that you DO believe her & that you are willing to listen to her & that you want & are trying to help her.
Letting her know that you believe her is a HUGE thing for her. Just because she is active (which I am proud of he for) & dones't "look" like she is in pain....does NOT mean that she doesn't hurt or that she is making it all up for attention or something of the sort. I can tell you from experience...one of the most hurtful, painfull things is for those you love best not to believe you or say comments that make you think that they believe you to be lying or acting. It really is important that she knows that you are in her corner & that you are willing to listen & try to help her. It is also important that you be honest with her & tell her when you do not know how to "fix" the problem. As long as you are trying....that is enough for her. We do not always have the answer...but seeking the answer & knowing that you are trying to help her...really will mean the world to her.
OK...next. The previous posters have all given you some GREAT advice!!! I am glad that so many people have taken the time to try to help you & your daughter.
I agree with many of the other posters that you should certainly seek another opinion (or 2 or 3)! Many of the posters mentioned Juv. RA, Fibromyalgia, RLS (Restless Leg Synd.) & various other diseases, syndromes & issues. I believe that all of these issues hold some merit & should be looked into very seriously. You need to find a doctor that is willing to listen to you & your daughter & more so, one that is willing & WANTS to work with you. There are many doctors out there that feel that they don't have lots of extra time to devote to just one patient. You need to find the doctor that wants to devote the extra time that it will take to help your daughter.
I personally have Fibromyalgia, spinal injuries, degenerating dics, Myofacial Pain Disorder, Costochondritis, migraines, tenosynovitis, IBS (irrital bowel syndrome), problems with my knees & ankles & more!!!
I will tell you that Fibro. (FMS) is the reason for many of my "problems". The FMS also causes me to have "knots" in my legs, for the to crap & swell, to be ice cold, turn purple, strange little sections on the tops of my feet swell up, etc. All kinds of strange things happen to your body when you have FMS. Other than taking meds to treat the FMS, people stretch & excercise alot, some eat diets that are gluten free, taking large doses of acidopholis tabs...eating yogurt with live cultures, some take passion flower & a few other "natural herbs", many people do hydrotherapy, people get massage treatments, reflexology, use heating pads (a GREAT alternative is to make & use a rice pack), cold packs, take hot showers, warm baths & soak....there are TONS of things that can be done for FMS without taking meds. All of these things are done just for the Fibro.!!!
My reason for mentiong all of the above is to show you that there are many alternatives to strong narcotics & other meds to treat different diseaes & syndromes. Don't get me wrong....NONE of these treatments take ALL of the pain away & there are times when taking pain meds & other meds ARE THE BEST CHOICE. You have a choice. You have options.
Whatever is going on with your daughter is real & needs to be "figured out". The sooner that someone figures out what is going on with her, the sooner a treatment plan can be devised, the sooner your little girl & your family can go on with your lives. This might be an issue for her for the rest of her life, it may not. You won't know until you find out all of the facts.
Your daughter is a very strong & tough little girl!!! I commend her highly. There are so many people that just give up & lay down & choose NOT to get back up. She, at such a young age, has made the choice to live her life to the best of her ability.
I hurt daily. All of the time. Everywhere. No amount of pain meds, alternative treatments, hot baths, great massages, etc. changes that. I hurt. Period. Everywhere. All the time. Sitting, standing, laying, moving, still....I hurt. But....I choose to move. I choose to be part of my family. I choose to go outside & play bubbles with my toddler. I choose to sew & be a functioning part of my household. There are many days where I dread & hate the pain that I know is about to course through my body the moment I put my feet on the floor & attempt to stand up & put my weight on them, first thing in the morning as I get out of bed. (this usually happens daily) There are many days where I CAN'T drive, can barely walk, can't open the bottle of juice that I want to give to my daughter, can't open the door to get into the bathroom, much less try to chase my 2 year old, change her diapers, give her food, clean my house, run errands, change my clothes, sew for the business that I am trying to start, play with my daughter, open her cup to give her something to drink, do the laundry, take a shower....but I keep going. Why? Because I choose to. I want to live my life while I have it.
I wish you all the best & I am proud of your daughter for choosing to live her life.
Thank you for taking the time to read my ramblings & opinions. I hope that something that I have said was helpful.
I wish you all the best.
be well. -A..
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B.R. answers from Asheville on April 16, 2008
As a nurse that has done pediatrics in the past, this doesn't sound like it's just growing pains or restless legs. I would definitely get a second opinion. You might get a referral to a rheumatologist or an immunologist that can do more specialized lab tests. I would take your daughter seriously... counseling certainly won't hurt. I know some of the others have said that it might help her deal with her pain. Since her symptoms are getting worse instead of better, I think it's time for them to quit blowing it off. Trust that gut-instinct that God gives Mom's. It's not normal for kids to hurt like that all the time. The stomach pain could be nerves, but not the rest of it. Be assertive! Good luck.
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D.B. answers from Charlotte on April 16, 2008
One of the things the child pyschologists say in the newspaper when people write in is not to talk about kids' problems to other people in front of them, because somehow it makes them think they can't get past these problems and makes them feel helpless. So even though you are personally taking this seriously and are very worried, don't talk too much about it in front of or with her, just listen and hug her and say it's going to be okay when she says it hurts. Find a good specialist and talk to her or him first without your daughter in the room, and tell the doctor why. That way he or she can do the exam and order tests without talking about it too much and scaring her to death.
Try to spend extra time with her when she is feeling good, so that she doesn't think in terms of you only paying attention when she hurts. (She wouldn't mean to come to that conclusion, but sometimes kids just think strange things.) The other thing you might consider is taking her to a therapist for play therapy. Her nervous stomach may be the stress of her legs hurting and play therapy might help relieve the stress and help her with the stomach problem. The play therapist might also recommend her to see a physical therapist after assessing her for a while - working on the large muscles with a PT might help her loosen those muscles and help the pain. PT's for children and play therapists don't act like doctors, and they're fun for the kids, but work one-on-one so she won't be as nervous as she would be with a large class of kids.
My thoughts are with you in figuring this stressful problem out. I hope some of these ideas might work for you.
All my best, D.
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S.D. answers from Chattanooga on April 16, 2008
When she has leg pain, you say her legs get very cold? When this happens do her legs change color as well? Her pain may very well be growing pains and anxiety as your pediatrician suggests and I'm sure not here to diagnose your daughters troubles, but I can tell you, that my daughter who is now 20, has neuropathic pain in her right leg (since she was 8) which was finally diagnosed as being RSD (reflex sympathetic dystrophy) about 5 years ago after many years of trips to the ER because she was in such great pain, and going through multiple doctors who could find absolutely nothing wrong with her or her leg. In RSD, what apparently happens is the nerve endings go all wacky and my daughter feels pain for no obvious reason or without anything causing the pain. Some days she looks perfectly fine and other days aren't so good. When my daughter's RSD is acting up, she has excruciating pain (and as you said would be lying in the floor screaming) then her leg gets very cold, turns purplish, then goes sort of numb and doesn't work so well. RSD is very difficult to diagnose and some physicians don't believe it actually exists. My daughter was diagnosed by a pediatric neuro-ortho surgeon at Cardinal Glennon Hospital in St. Louis, MO.. ONLY after she actually had an episode during a visit at his office.
Let me tell you, the years of pain without being diagnosed led my daughter to think that nobody believed her, which evolved into a whole other set of problems. Chronic pain is hard enough for adults to deal with but it is devastating to a child.
I've got a son who is 10, who has suffered from growing pains (muscle spasms just before/during a growth spurt) and it is nothing like my older daughters RSD pain.
My best advice to you, is that you know your child better than anyone. If you truly believe that this is more than growing pains, then have her checked by a pediatric neurologist... growing pains doesn't generally cause limbs to change color and/or temperature. I hope and pray that this isn't the cause of your daughter's problems. It can occur without any warning and usually stems from a nerve/soft tissue injury which may not be apparent on how it happened. My daughter was run over by an ATV when she was 8, breaking her right leg and subsequently causing the nerve damage, but I've been told that it can happen from something as simple as a fall or sprain.
If you want to ask any questions about RSD etc. or anything else for that matter, just email me privately.
Best wishes and hugs to your little girl,
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M.T. answers from Nashville on April 16, 2008
She could have something like Fibromyalgia where your muscles hurt all over OR she could have RLS (restless leg syndrome) Her stomach could be from enduring the pain. She probably runs around during the day because after a while your body gets use to the pain and she can tolerate it as long as she is busy. I would call a childrens hospital and ask them what kind of dr that she would need to go to with her symptoms. Have someone run an MRI on her entire body to see what is going on. I would definitely go to a specialist and would go somewhere like (I am in Tn so we have a place like Vanderbilt Children's Hospital. In Memphis they have St. Joseph Childrens Hospital.) So I know that somewhere around Charlotte NC where you are, they certainly have something like that. I would get on the computer or in the phone book and look and start calling the help line or start with calling information and asking what kind of dr that you should see out first. If you need a referral then go to your pediatrician and tell him that you don't have anything against him but you want need a referral to have it checked out and this is who you want to go to because you are positive it is more than growing pains now... tell him it is mother instinct and be adament and very FIRM about it when you talk to him. If he knows you are scared and serious, he will listen. Right now he doesn't realize that she is as serious as she is.
I do agree with the dr though that taking calcium can prevent leg cramps so if you haven't tried that, do try it.
But regardless, I would see help from a child specialist.
Good luck and I feel for you and now I will worry about her (even though I don't know her).
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L.R. answers from Raleigh on April 16, 2008
check out this site...sounds a lot like what your daughter may be going through. This condition is usually seen in athletic girls average age of 12 but has a range of 5-12 years old...
Hope this helps
C.B. answers from Louisville on April 16, 2008
I would definitely get a second opinion as soon as possible, especially since it seems to be spreading. Good luck.