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My daughter has been living with pain for 8 years, help!

My daughter is 9 years old.  She is a normal kid except she has been living with excruciating pain (mostly at night) for at least 8 years that can be calmed only by using ibuprofen.  Before she could speak, I thought she might be lactose intolerant because of the way she would pull her legs to her belly and cry, but as she got older it became clear that it was joint or muscle pain.  It is sporadic at times but recently became an every night thing.  It first started with her waking me up around 3am crying in pain.  She breaks into a sweat.  If it's her ankle or knee that is causing pain - she can't walk due to weakness and can't even get out of bed or climb on the toilet.  Sometimes she just lies on the floor and cries until it subsides enough for me to pick her up and hold her on my lap.  If it is her shoulder, arm or wrist, she can't use her arm.  Sometimes the pain can start somewhere and spread to another location in the same 'episode' (with more than one place hurting at a time). The pain lasts for about 20 minutes then subsides.  It's just heartbreaking to hear her cry and ask why this has to happen to her and why does she have to have this pain!!!  I have tried rubbing the location and using a heating pad to reduce the pain, but I don't think it does more than make her feel loved.  I noticed that if she took ibuprofen at the onset of the pain, it would go away for the day, but if I didn't, the pain would come back within the hour - much worse.  This could go on 3 or 4 times in a night leaving us both exhausted the next day.  I haven't seen any signs of it happening after a day with more exercise or physical assertion than the next.  I have even taken her to the ER in the middle of the night a couple of times but she's usually fine by the time we get there. Besides, they thought she was doing it for attention, however, a mother who KNOWS her child can usually figure it out - and when she wakes up out of a dead sleep crying and sweating and unable to walk, uh - she's NOT faking!!!  After taking her to the doctors and to several specialists (rheumatologist, gastroenterologist) at Children's Hospital, we still have no explanation to what could be going on with her.  She had an ultrasound of her abdomen back in '04, they did a CBC? and CMP? (normal), and has had several blood work-ups done including a test for Lyme's disease, the latest done last year..  I think the rheumatologist thinks I'm crazy because she seemed absolutely fine when I brought her in.  When I had her in to see the rheumatologist, he said he didn't think it was arthritis because arthritis is usually only in the lower extremities.  I told him that I was never sure whether she was going to wake up with pain in the middle of the night and I didn't like giving her ibuprofen on an empty stomach.  It's very difficult to make a child who is crying in pain eat a cracker so she can take medication- especially because she is half asleep!  On the other hand, if she had pain early in the evening and I gave her ibuprofen, she slept through the night.  The rheumatologist told me to give her 1 ibuprofen before bed each night to resolve the issue.  To me, this is just a band aid.  I really feel something bigger is going on here. Am I supposed to give her ibuprofen for the rest of her life?!  It's a nightmare if I forget to give her ibuprofen before bed...so I have to make sure even the babysitter knows the drill.  One night she woke up with pain in her chest (last year) which spread to her shoulder.  She laid on the floor crying, unable to get up and that scared me to death.  Lately she has been waking up a few times a week, even though she has taken an ibuprofen before bed.  It seems to be slowly increasing.  Her urine is very pungent- just throwing that out there in case it's relevant. For the past few days she has been complaining of the left side of her rib cage tightening and hurting intermittently (maybe muscle spasms from exercise?) and headaches.  The spasms in her chest were almost every five minutes on Saturday.  Today is Wednesday and she’s only complained less and less each day since then.  She’s been trying not to complain, but I can see her grab her side and wince every once in a while.  I’m not sure if the increase in frequency of 'pain episodes' and these other symptoms mean anything, but I'm on my way to the pediatrician right after I'm done typing.  I'm really hoping someone here can help me since the doctors haven't been able to!  Thank you for any input you may have!
5 Responses
Avatar universal
Have they tested her for Celiacs disease? It can cause severe joint pain and other crazy symptoms. I would start with allergies and work from there. Make a list of everything she eats in a day and if she has pain that night, make a note of it. You may see a pattern start to form. The problem with a lot of diseases is that it can take years for it to fully manifest. There are so many possibilities and it really is a matter of luck in figuring it out. Just dont give up. Be your daughters advocate. I wish you luck.
1756321 tn?1547098925
Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD) is worth considering. The condition can occur spontaneously, especially in children. Theories are that CRPS is either caused by a dysfunction in the sympathetic nervous system or by an overactive immune system response. CRPS often follows trauma or surgery however there is no associated or identified inciting event in one third with CRPS.

There is no specific test to diagnose CRPS. An x-ray may show thinning of the bone; a bone scan may show abnormality; MRI may show a number of tissue changes; sympathetic nervous system tests may show some abnormality.  There may be excessive hair growth and changes in nail quality.

Symptoms can come and go, be long lasting, or go into remission. The most commonly affected parts of the body are the hand, wrist, foot, ankle and knee. Sometimes a whole limb can be affected such as pain from the shoulder down to the wrist. CRPS may get worse over time, and may spread to other parts of the body.

Symptoms include:

Severe burning or stabbing pain
Excessive sweating
Extreme sensitivity to touch
Warmth and/or redness of the skin
Hypersensitivity (a light touch might cause pain)
Changes in skin texture - thin or shiny in the affected area
Joint stiffness
Weakness or difficulty with movement
Muscle spasms
Muscle weakness
Muscle loss (atrophy)

Treatments for CRPS can include:

Cold laser therapy
Fenzian Treatment System (Fenzian)
Topical analgesics
Painkillers, such as opioids or NSAIDs
Adjuvant analgesics, such as antidepressants or anticonvulsants
Physical therapy
Nerve blocks
Spinal cord stimulation
TENS machine
Gradual exercise can help prevent contractures (permanent shortening of muscle)
Avatar universal
I could have written exactly the same thing. My daughter is now 10 but has been suffering for over three years and like you we'd been round the doctors and got told it must be stress. Our breakthrough came when I was diagnosed as being coeliac. My daughter was negative but we decided to try her on a gluten free diet and we had a major improvement. We then realised that yeast was also a major culprit as is sugar. The specialist that follows her thinks it may be candida but she seems a bit young. I don't think we've got to the bottom of it but she definately a hundred times better than before and can do sport again!
Avatar universal
The funny thing is - sports don't affect her.  She has pain whether its basketball season or not...- even after a restful day she has pain. It's worth a try to eliminate glucose from her diet and see what happens. Thanks for you input.

1530171 tn?1448133193
Hi lcas.
I'm sensing your pain as a parent.
Medicals labels and dx aside, a comprehensive naturopathic approach
is warranted at this point.
A complete nutritional panel including minerals-cellular not blood- along with food intolerance/allergies/sensitivities testing. Holistic allergy elimination has made great strides in this area- conventional medicine is still in the dark ages with this.
Yeast issues, underlying infectious conditions, metal toxicity, assimilation and absorption issues, deficiencies in regards to neurological dysfunction, all must be investigated thoroughly!
An elimination or hypo-allergic diet would be of value as well.
Professional medical bias is often impeding the process of getting to the bottom of situations like this one. The inter-connectiveness of body systems,organs and parts is greatly undermined , as each specialty mostly takes the top-down approach. Time and financial considerations
do not allow for establishing  effective communication and further analysis between specialists at the expense of the sufferer.
Personally, I would go to an experienced and reputable Naturopathic Doctor, to act as a Health Coach.
Your girl's suffering has gone on for too long!
Please do not hesitate to contact me if you need more details.
Blessings to all of you!
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