My daughter has been experiencing chronic pain since September, 2010. It all started with sudden onset pain in her chest. She was told she had pleurisy and then when the pain didn't improve she was admitted into the hospital and told she had costocondritis. With no improvement, she was released after 24 hours and told to take motirn. He pain then spread to her back as well as her chest...She has been seen by a pulmonologist, and she ordered a sleep study which showed some moderate sleep disturbances. Not full blown sleep apnea. The pain then began to spread to her hands, fingers, wrists, knees, ankles and feet. She has had a full rheumatological workup and was found to be positive for the HLA B27 genetic marker that signifies Spondolyitis. She was then diagnosed with spondolyitis and pain amplification. She did an in-patient chronic pain protocol at Phoenix Children's hospital for 2 weeks and was released with the message that she needed to give the "new" drugs time to build up and provide her with some relief.
Following her release from the pain program, she continued with weekly psychology sessions, 3 times per week PT appointments and drug therapies of neurontin, elevil, chlonidine patch and flexeril. She continued to experience pain and in fact got worse following her release.
She was then readmitted into PCH for pain management and further testing. During this week long stay, she was told she doesn't have any form of arthritis (spndolyitis) and that diagnoisis had been in error. They said this time around that she has fibromyalgia and complex pain. She was elevated to the highest possible dose (1200 X 3/day) of the neurontin and they switched her from the elevil to cymbalta. With the start of the cymbalta, she got a headache that she has had ever since with no relief. The only thing they would allow her for the head pain was Tylenol. She was again sent home and told she needed to once again allow the medicine to build up in her system and do their job. Upon reaching the max dose of the neurontin and keeping it there for 2 weeks, the doctors declared the neurontin had failed and they were going to taper her off the neurontin and taper her on to lyerica. She is now completely off of the neuronitn and is at 75 mg in the AM and 150 mg in the PM of the lyerica with the ultimate dose they are heading for of 150 mg twice a day. She continues to get worse and is now yelling out in pain due to sharp stabbing chest and knee pain.
IN the midst of all this, she has seen a homeopathic doctor who has tried accupunture and doesn't agree with the fibromyalgia diagnosis. She mentioned it could be Valley fever or Lymes disease so we have had her tested for both of those. Her lymes came back negative and her valley fever came back indeterminate so they re-tested and the 2nd test came back negative.
Her pediatrician just realized she has something going on with her blood pressure...in the beginning of all this her pressure was significantly high. We were told repeatedly that was due to her being in pain. Once they started the chlonidine patch, her pressure dropped to normal and is sometimes even low. They just realized 2 weeks ago that her pulse increases by 30-60 points upon standing and have suggested POTS syndrome. Of course the doctor just said something is happening her and told us to keep track of her pressures laying down and standing. I found the information on-line about POTS.
We are at a complete loss. She has gone from a high achieving honor student that plays multiple sports on a competitive level with lots of friends to a child that can't attend school for more than a few hours at a time, can no longer play her beloved softball and doesn't spend time with her friends because she is in so much pain.
The pain doctors say their job is to teach her how to "live" with the pain. How does a child live with extreme pain that she labels as a 9 out of 10 on a daily basis. There has to be something else going on here. We feel like her rheumatologist has completely given up on her and her pain doctors look at her as if she is just another difficult case they aren't sure what to do with.
Here is a list of her symptoms: Can anyone see something they recognize that the doctors are missing?
Chest pain
Headache
Back pain in all areas
Pain in both hands, wrists and fingers
Pain in both knees, she now often limps
Pain in both ankles
Intermittent foot pain
Intermittent elbow pain
Fatigue
Sleep problems
Brain fog
Blood pressure issues
Generalized weakness (the doctors don't agree on this because she is so strong due to her sports) - we know it's there though
Weight gain
She has been admitted into the hospital on 3 separate occasions in the last 5 months and each time they tell her they are going to be able to reduce her pain. They say they are going to give her something for the pain and each time another doctor contradicts the other doctor and says they will not give her anything for the pain since she has been on the complex pain protocol and they refuse to use any type of pain killer. Her pain tolerance is very high and she doesn't scream out and cry like many other children would. Do to this they have labeled her as stoic and say she is depressed and that it is not really the pain that is causing her problems. Her psychologist knows her the best out of all these doctors and she says not only is she NOT DEPRESSED; she is dealing with all this better than she could even imagine. Her MDs will not listen to the psychologist and keep focusing on her lack of facial expression and lack of pain response to their direct manipulation. She will only tell the doctor on an exam if something hurts if they ask her specifically, she won't cry out in pain with each touch. I have told all her doctors this and they still refuse to ask her with each touch if it hurts!
