Had a really bad doctor visit

Discussion in 'Fibromyalgia Main Forum' started by TXFMmom, Sep 30, 2006.

  1. TXFMmom

    TXFMmom New Member

    I had my right foot and lower leg swell and it was so painful I could not walk on it without sweating.

    It swelled in a funny way, with the toes swelling, then the foot, and then it swelled at the ankle. I thought that I might have a stress fracture, or it could be connected to my immune problems of late.

    My doctor is an internal medicine guy but their practice had added this newly Boarded Family practice guy.

    He looked at it, and I explained it was always warm, had a pulse, but had this horrible pitting edema, and how it had swelled in a strange way, somewhat like the Michelin man, with demarcations and almost like layers of inner tubes. Icing it in various places all night, elevated had brought the swelling down.

    I am rather heavy, so it is difficult to say whether it could be a blood clot, but he looked at me and asked if I had ever had cancer, and I told him yes, I had, a melanoma on the other side buttock. I had considered that this could be lymphedema from a malignancy, on my own, perhaps a lymphoma.

    I am currently on IV IG's because of repeated infections and test results which were horribly low, and I specifically asked my internist, at a previous visit about the possibility of it being a lymphoma, and he doubted it, as did my FM doctor, but I think the guy could be right.

    Back to the regular doc on Tuesday, and I am going to demand an MRI, Cat Scan, Pet Scan, whatever and everything scan, as I have complained of abdominal pain for the last six weeks, as well, and it was sort of shrugged off.

    As a former CRNA, and Advanced Nurse Practitioner, I am pretty pro-active, but to tell you the truth, I am to the point where getting out of bed is exhausting, I have to dangle for a while before standing up, and even going to the doctor drains me. My scooter is really getting a workout, and I have to sit to do any chore, and showering and getting dressed requires half an hour or an hour of rest.

    My husband isn't too happy about being a nurse, and HE IS A LOUSEY ONE. I asked him to get me an ice pack and he brought it in and SLAMMED IT ONTO THAT PAINFUL FOOT.

    This is the man who had his wisdom teeth extracted and took every last one of a ten day supply of VICODIN FOR HAVING HIS TEETH EXCISED. I just picked up the script and had it home before I realized the doc had given him that much, and he took them every eight hours for TEN DAYS. I worked with the doc, and I guess he didn't want me to have a whining husband.

    When I had mine out, I took Tylenol.

    I don't think any of the doctors really appreciated how bad I really felt, until I told them that I wanted to find a really good nursing home or a hospice. Both said, don't tease, and I looked them in the eye and SAID, I AM NOT TEASING.

    I need to be in a nursing home to get some care. Then, and only then, did they realize how really badly I feel. After all, really bad care is better than no care.

    Were it not for the fact that my mother is still alive and she was crushed when she lost her sister not a year ago, and it would really be a great loss for her, I really would not fight anything at this point.

    I am no quitter, believe me, but between the FM, my spine being decimated, being unable to even take care of myself, and being so tired, so much in pain, and being so useless, this isn't really living.

  2. mymichelina

    mymichelina New Member

    I am so sorry you are feeling so down, but I can understand why after reading your post. I don't have any professional advice to give you, but I just wanted to let you know that I am here and I heard your plea. I have less health problems than you, yet I feel the same despair every day. I guess we have to just promise ourselves to get through one day at a time. And remind ourselves that we are not alone.

    gentle hugs
  3. RicksChic

    RicksChic New Member

    TXfmmom,

    I've been staring at the screen for over 10 minutes now, trying to find the words that could express how deeply I empathize with you.

    I too live with the thought that if not for my daugters, baby grandaughter, and wonderful new husband, I would give up. A little Humulin R, and...well, you know.

    I'm 45 years old, and have been fighting this disease for 18 years. Finally, only this year have I found a Doc that would prescribe pain medication on a long-term basis. However, it is through the back door of another condition more acceptable by the medical board: Degenerative Disc Disease, bulging disc's in the neck, and L4,and L5. He knows and I know it's mainly for the Fibro. He is my Doc at a Pain Center, and I also get steroid nerve blocks, and injectons PRN. Sometimes it helps, sometimes not.

    I recently stopped taking the Kadian for over a week to r/o it being the cause of my newly acquired Narcolepsy, and my pain was so horrific that, there would be no way I could ever work another day of my life. It's torture even with the meds, but financially, I have no choice. No job, no health care.

    Something I have learned, is that Doctors hate for the patient to know what's wrong and come with a treatment plan. Why is this so? Now, I chose my words carefully, and I have to make the Doctor think what I want is his idea. This is a skill I've learned over the last 16 years as an LPN working in Nursing Homes.

    I used to stand in faith that God would heal me, but after so long, I gave up. I know He didn't give me this affliction, but why won't he take it away?

    I thought that as I wrote, I would find words that would offer hope. I don't have any. But God does. I don't know if you know Him, but I know He is our only hope. Just open His book and read. Read until you find what you need to get you through another day. And as far as you being useless? God has used you to wake me up. That while I certainly should use what Doctors and medicine have to offer me, I've negleted Him, and the comfort that He can provide.

    And I do know, that no matter what condition we are in while still on earth, God has a purpose for us. I will pray for you. That you find respite. That you find purpose. That your husband will have compassion towards you. That you find peace, and most of all hope.

  4. IntuneJune

    IntuneJune New Member

    I am so sorry, I am praying for you today.

    Please keep us posted.

    Love, June
  5. Pianowoman

    Pianowoman New Member

    I know I can't give you what you need but I can be here to support you. I am so sorry that you are in this place. From what I have read, you have always been very proactive about your health. I urge you to continue to do that , find the strength somewhere.
    I hope and pray that you are able to get the testing done and find some answers. You deserve that and more. I understand the being so tired, the pain and the needing to find some peace. All we have is hope and I am hoping that you will find the help you need.

    Kathy
  6. minkanyrose

    minkanyrose New Member

    I am sorry you have to go through the getting Docs to understand I know it is very frustrating.I have down days like yours and out of 7 probably 5 days that way of feeling totolly usless.

    I am trying to have 3 days of feeling better about my illness then 4 and so on . My 18 year lod daughter is a senior and she pushes me to see what I have positive going on. It may be as little as waking up that morning or as big as her saying mom I need your years of experience to get through this problem.

    to me that doesn't seem enough as I was a do it all before this DD hit hard 5 years ago have had it for 20 years before that undiganoised.

    I wish I knew what to say to give you the lift you need.I don't have the bdy that works well anymore either but I still have my mind and that is what I consentrete on on my down days.

    I hope you feel better soon. my thoughts and prayers are with you. you are needed here you may be the only one with the answer to a question some day.

  7. TXFMmom

    TXFMmom New Member

    Paticularly for the LPN who works in a Nursing Home. She, in particular, would understand how medical people feel in regards to being in a nursing home.

    I didn't intend to wallow in spineless whoa is me.

    Partly, I wanted to tip off the others on this Board, that sometimes, we get ignored because we have FM, and they just attibute everything to it. MANY TIMES, THAT MEANS THAT THEY IGNORE SERIOUS THINGS.

    Truthfully, though, most of the fight in me is gone.