Amplified pain syndrome

[momonnet]

Has anyone's child been diagnosed with diffuse amplified pain syndrome. We have been going through a nightmare with my daughter since the end of oct. long story shirt... Ku said she had lupus light and everything they did did not help.... Changed to children's mercy. They don't think she has an autoimmune disease they think she has diffuse amplified pain syndrome. My daughter is in constant pain. Morphine doesn't even help. Just wondering if anyone's kid has been through this and what helped them.

[JoLynne]

So sad to hear of a child struggling with that much pain. My heart goes out to you.

[momonnet]

Thank u. I would love to find another parent to talk with who's child has this. I guess it's pretty rare.

[momonnet]

What about jr. Fibromyalgia ? It is close to that. Anyone's child have that. How do they get relief?

[G's Mommy]

Not much help with your specific question, but I have a friend with an ill child who also was getting conficting information she had good luck with St. Louis Children's hosptial if you need yet another opionion.

[momonnet]

Thanks for the reply. Did she try both Ku and children's first? Do you know her child's symptoms? Thanks

[momonnet]

Ok..... If no one has kids with it.... Does any adult here have it?

[dlm]

hi,

my daughter is 16 we have been treating her for polymyositis, had a bad reaction to sub q infusion meds, so we decided we needed a second opinion, we went to Childrens Mercy in kc last friday and they think she has amplified pain syndrome. they will do a muscle mri on thurs and we should know more after that. nothing helps her pain right now, doesnt matter what we give her or how much. we havent tried morphine.. this has been going on since the end of july. she missed all of school last week and so far this week. She had a massage yesterday and she felt a little better from that then woke up with the flu..
very frustrating and upsetting to deal with, she has taken so many meds so far, steriods, plaquenil, methotraxte, cellcept, hizentra sub q infusions, she does take lots of vitamins also. currently we have her off everything but the vitamins and steriod. started out with weakness in arms, pain across shoulders, tired, overall feeling like crap. couldnt even carry a grocery sack, had emg of nerves, it was okay, found a pinched nerve in right elbow.., did mri of head it was okay, started meds, felt little better when she was taking steriod shots, but that would only last for a few weeks. had tons of blood work done. did find her igg levels were out of sync so got those back and working.. she never had a postive ana, her cpk level was good also.. she gets tired, but we have figured out that when she played basketball at school she didnt miss much school, so if the diagnoses of excerise is the key to help this amplified pain then it makes since, she has been active since basketball but of course not like going to practice everyday. her hands hurt real bad and cramp up, she cant go up alot of stairs so she will ride eleavator at school. She is also very stubborn and pushes threw alot, best thing we did was do a 504 plan at school, so that way we didnt need a drs note every time she missed, also lets everyone at school know whats going on, extra time on work or tests if she needs it, because the meds messed with her memory alot.. this is a book sorry.. hope this helps some and i am sure i have forgotten some things. take care and good luck.

[rhondalevinson]

My daughter has just been diagnosed with this. Has your daughter started the therapy with the integrated pain clinic at Children's Mercy? How are things for you two? I am pretty anxious about the diagnosis and what happens next.

[dlm]

we just got the official word this week, we have started the descentising this week, and we will do out patient therapy closer to home first.. we are about 1hr 1/2 from childrens. waiting on insurance to call me back on copays for the therapy.
does your daughter get to do therapy at cm? we will have an appt with them in 6 weeks to make sure that the therapy people here are pushing her hard enough. she will also meet with a counseler to learn stress management. we saw Dr Hoffart and she was amazing.. we really are so glad we got a
second opionion.. no more nasty meds... good luck and keep me posted on what you find out and i will let you know as well.