my daughter, age 40, is now experiencing CFS prejudice

Discussion in 'Fibromyalgia Main Forum' started by sunflowergirl, May 23, 2013.

  1. sunflowergirl

    sunflowergirl Well-Known Member

    All these years that I've gone thru *&#$@% she's told me that I need to just think positive and try to live a normal life......shall I say little sympathy for what I live with. For the last 2 years I've seen little signs that she might be developing CFS or FM. She's had some thyroid troubles after she delivered her first child.....graves disease....which eventually went away with meds. She's had follow up thyroid tests but lately she's very, very tired, trouble sleeping, strange feelings in her muscles, etc. etc.

    Yesterday she went to a doctor at a clinic we've normally gone to and was apparently treated like a "mental case". Big shock to her....not to me though. The doctor told her she had ordered thyroid tests 3 years ago!!!! And things don't change???? She's now been referred to a neurologist because the doctor she's been seeing has now gone into private practice. This doctor wouldn't give a renewal of her prescription for gabapentin and this is something she can't go off cold turkey. What a mess.

    I'm seeing giant changes with Obama care coming on. She's stuck because she picked her HMO....thankfully my husband still works and we have a PPO, otherwise I would also be up a creek.
  2. MicheleK

    MicheleK Member

    This will be a real eye opener for her. Most of us do not have our eyes open to the realities of what those with little understood chronic illnesses go through.

    I have had both Hashimoto's and Graves and if she was treated by medication then it could very well be her thyroid making her feel what she is feeling and not her coming down with ME or FM. Let's hope not anyhow.

    She definitely needs a full thyroid work up.

    Why in the world someone would send her to a neurologist when there seem to be no symptoms mentioned to warrent that is beyond me. I guess she will be the "hot potato" in the medical community and be passed around from specialist to specialist. I hope she comes across someone competent.
    I am on Medicare but in a traditional program. I long ago lost interest in being in anything else. I want to be able to go where I want to go. I hate HMO's. They are good for the healthy.
  3. Granniluvsu

    Granniluvsu Well-Known Member

    Sunflower Girl - I am so sorry to hear what you and your daughter are now going through,. Yes, no one understands how it is to have CFS/FM for years and no one has a clue. I know that years ago some of the docs I went to thought I was crazy,. looked just great and had OK blood work, etc. etc. for Thyroid which they thought was normal at that time anyway.

    Hopefully, she can get some answers and treatments that will help her. I have had all my problems for over 30 years. DH thinks he understands but really has no clue - poor thing !

    Julie - Lindsay is lucky to have you for a mom who really understands because you have gone through all that and still are. Wouldn't surprise me if a couple of my dauaghters have CFS too, lots of little problems and no NRG.

    Love you all,
  4. sunflowergirl

    sunflowergirl Well-Known Member

  5. sunflowergirl

    sunflowergirl Well-Known Member

    the reason she is being sent to a neurologist is almost 2 years ago she and her husband had brain scans from Dr. Daniel Amen's clinic. You might know who Dr. Amen is. Anyway, my SIL was having drug problems so he had the brain scan and because her anxiety was over the top they convinced her to also have. Turns out they both have some brain damage (he from wresting days in HS) (an overactive part of the brain that can't turn down) and I think hers from when she kept hitting her head in the crib as a baby. Anyway, they were both put on gabapentin (an anti seizure med) but this doctor said she couldn't renew the RX so that's why she now has to see the neurologist. She's taking all her brain scans etc. so hopefully she can get her RX renewed. Now if I'm correct, there are FM doctors who prescribe gabapentin for the pain?

    I'm not going to go into how she treated me over the FM.....let's just say she didn't believe me. I'm a good listener for her and sympathize with what she's going thru. But we all have stories of how we've been treated by non-believing doctors.
  6. stick2013

    stick2013 Member

    Gabapentin is also used as a pain medication for people that have pain caused from nerve damage. My BIL had singles, and has nerve pain in his face now. He was put on Gabapentin for the pain. I think it's irresponsible for a Dr to not renew the RX.
  7. MicheleK

    MicheleK Member

    Sunflowergirl thanks for that info. Now it makes sense. Yes some FM doctors do use Gabapentin. If it helped her before then perhaps the doctor will be more open to allowing her to try it again.

    You mentioned that we all have stories of how we've been treated by non-believing doctors and that is quite true. But it's one thing to be treated badly by a doctor and another thing to be ignored and misunderstood by the very people you most likely poured out your life's energy raising. We want to feel understood by our loved ones and when that doesn't happen it hurts.

    My children are very good about my illnesses but my siblings and mother were not. for almost 20 yrs they ignored me, gossiped that I was a hypochondriac, and never offered to help me in any way. But they changed after joining Facebook and seeing hundreds of other patients commenting on my personal page who were going through what they remember me telling them I went going through.

    They didn't beleive me but they began to beleive after all the posts they read. They now check in with me and show some empathy which I appreciate. People can change. I never thought they would but they did. It took 2 decades but it finally happened. Lots of emotional hurts piled up during those years but it's funny how once they showed empathy and I knew they finally beleived me, my hurt just went away. I was just happy to finally have the acknowledgement of the reality I live in with these illnesses.

    I blame the CDC and other government organizations for feeding the public misinformation and painting patients as hypochondriacs. That is where my family go their information. Of course they should have beleived me and not needed to hear it from hundreds of others to beleive, but I had always been the black sheep and target child in the family so the pattern of them never really seeing who I truly was was already their pattern.
    Godismystrength likes this.