DR/NP's VIEWS ON TODAYS' VISIT AM I CRAZY?

Discussion in 'Fibromyalgia Main Forum' started by judee, Nov 4, 2002.

  1. judee

    judee New Member


    Would you please clarify whether or not I am crazy.???? I took Lindsay (my 11 year old with FMS) back to the doctor again because she is still down on the couch from backpain. I was almost relieved that her PCP couldn't fit her in because I knew I was going to get the "flare up" speech. She ended up seeing the Nurse Practitioner; my goal was just to get her something for the pain since we almost ended up at the ER at 1:00 a.m. We are going to try the Ampitriptyline and Ultram again (maybe the headaches she got before were from the FMS and not the drugs), and Physical Therapy.. She asked me if she went to school today. I told her no, that she has been unable to go for a few weeks, she couldn't even go trick or treating, and said "well she is here". My response was that the Dr's arent' the one dealing with this, that it is easy to say send them to school unless they are throwing up and have a fever but that is a bit unrealistic when it comes to FMS. I said she has only walked about 50 ft in this office for a few minutes. Her point was that there is a difference between physically not being able to do something because of pain versus not being able to do it because it hurts too much, (I assume she was referring to the fact that Lindsay wasn't pushing through the pain). Am I missing something here? I mean don't we as a adults not do things because it hurts to much, like work etc?? I swear she the NP looked at me like I had two heads, like if she could make it to the office to be looked at why couldn't she go to school. If the Dr. isn't supporting us they way we need to be can I get in trouble for not sending her.?Remember she is being tutored through the school 3 hours a week. Tell me would a 11 year old kid lay on a couch for over a month, and not go trick or treating if it really wasn't that bad. Can you guys fill me in on back and head pain. Is it disabling?? How long have your spells lasted in these areas, or do they come and go? Or am I crazy???
    We are still working on another doctor but out of state is tough Medicaid wise. I am going to try to go to the local support group maybe they can help me with this. But I really don't have someone to watch Lindsay nearby. I am going to try and work out something.

    Judee
  2. judee

    judee New Member


    Would you please clarify whether or not I am crazy.???? I took Lindsay (my 11 year old with FMS) back to the doctor again because she is still down on the couch from backpain. I was almost relieved that her PCP couldn't fit her in because I knew I was going to get the "flare up" speech. She ended up seeing the Nurse Practitioner; my goal was just to get her something for the pain since we almost ended up at the ER at 1:00 a.m. We are going to try the Ampitriptyline and Ultram again (maybe the headaches she got before were from the FMS and not the drugs), and Physical Therapy.. She asked me if she went to school today. I told her no, that she has been unable to go for a few weeks, she couldn't even go trick or treating, and said "well she is here". My response was that the Dr's arent' the one dealing with this, that it is easy to say send them to school unless they are throwing up and have a fever but that is a bit unrealistic when it comes to FMS. I said she has only walked about 50 ft in this office for a few minutes. Her point was that there is a difference between physically not being able to do something because of pain versus not being able to do it because it hurts too much, (I assume she was referring to the fact that Lindsay wasn't pushing through the pain). Am I missing something here? I mean don't we as a adults not do things because it hurts to much, like work etc?? I swear she the NP looked at me like I had two heads, like if she could make it to the office to be looked at why couldn't she go to school. If the Dr. isn't supporting us they way we need to be can I get in trouble for not sending her.?Remember she is being tutored through the school 3 hours a week. Tell me would a 11 year old kid lay on a couch for over a month, and not go trick or treating if it really wasn't that bad. Can you guys fill me in on back and head pain. Is it disabling?? How long have your spells lasted in these areas, or do they come and go? Or am I crazy???
    We are still working on another doctor but out of state is tough Medicaid wise. I am going to try to go to the local support group maybe they can help me with this. But I really don't have someone to watch Lindsay nearby. I am going to try and work out something.

    Judee
  3. klutzo

    klutzo New Member

    I am a Psychiatric Social Worker with FMS, and from the info you gave here, you don't sound crazy at all. This just sounds like the junior version of the lecture adults with FMS get from docs who don't understand the illness.
    Have you tried the "good doctor" lists here? I wish I could be of more help, but FMS resulted in a hysterectomy for me at a young age, so I don't have kids, and I'm no expert on how the schools work. I know teenagers with FMS sometimes get home schooled. I have had headaches put me out of commission for as long as 3 days at a time, but back pain has only made it difficult to function, not impossible. Hopefully, someone with more knowledge will come along and help you, but I just want you to know that you don't sound crazy to me....don't let them turn it around and make you feel guilty!
    In sympathy,
    Klutzo
  4. Granolamom

    Granolamom New Member

    I am also a mother of four and I can not imagine having to see my child go through the pain your poor daughter is feeling!!!

    I have recently been diagnosed but have been in pain for years. I am so thankful that my girls have to yet experience what your sweet daughter is going through.

    How heart breaking it must be to see your little girl in such pain, you and yours will be in my heart and prayers

    Blessings and hugs to you and your child,
    Granolamom (Lee)
  5. karen55

    karen55 New Member

    First of all, I'm so sorry to hear you have an 11 y/o suffering with this. It's hard enough for adults to deal with. I hope you can change doctors or see a new one for your child.
    Secondly, regarding the back and head pain, YES they can be disabling. Migraine headaches can make you so sick and in so much pain, all you can do is lie in bed, not that it helps, but you certainly aren't up to doing anything else. As for back pain, I've had 2 ruptured discs and I was completely unable to do anything until surgery, both times. The recovery period for each one was different, but the point I'm trying to make is, back pain can knock you flat. My last back surgery was about 2 years ago; even now I have days where it really hurts to sit, or walk, or sometimes even to lie in bed, depending on exactly where the pain is. It's different for everyone.
    My own 17 y/o daughter was in 2 car accidents within the last 16 months and had back and neck injuries. She is still in physical therapy. She went from being a totally active, normal teen, to one who is in pain daily, and unable to attend a lot of social activities because of it. It's heartbreaking to see any child suffering that way.
    I would be so angry at the implication that your daughter should be pushing through the pain. If a child feels well enough, they will play, continue their activities, whatever. You know something is wrong when that ceases.
    BTW, my daughter is taking Ultram for her back and it helps her.
  6. BethM

    BethM New Member

    I have been a school nurse for 17 years, and worked pediatrics as an RN for 5 years before that. Yes, I've seen kids in chronic pain on home/hospital teaching, many times. There is no reason whatsoever that your daughter should have to 'push through the pain'. Pain is there for a reason, and must be acknowleged. Yes, there can be psychological factors as well, and the longer the pain continues, the more complex the scenario can be. Is your daughter receiving counseling? Is she depressed? I hope you can get a doctor to look at these issues as well. Chronic pain in children has different aspects than in adults, as they don't have the life experiences to draw on that we do.

    You definitely need a different doctor. How could any pediatrician worth his salt look at a child in pain and say what yours said to you? Going to the doctor's office is very different from spending 6 or 7 hours at school. I hope you find someone to help. My heart goes out to you. My older son was diagnosed with asthma at 20 months, and it is horrible to watch your child suffer. He is 20 years old now and very healthy, thank God!

    Hugs, and wishing healing for your daughter,

    Beth.
  7. RoseTx

    RoseTx New Member

    I don't know what state you are from. Find out what the State laws are about home schooling. Talk to the Principal to find out what they can offer you for you 11 year old. Find another doctor. Any doctor or nurse practionioneer stupid enough to think that anyone with FM (no matter what their age) should push through the pain ought to be shot to get them out of the gene pool. If this little girl has been dxed with Fibro you need to start making some plans to help her live her life with this DD. She needs an education so don't just take her out of school. If you are not able to teach her yourself then find out what her rights are in your state and in your school. This is just makes me so angry to hear about idiots who would treat a child this way. Good luck in your search. Hugs, Rose
    [This Message was Edited on 11/05/2002]