Fibro and Hemochromotosis

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by lorashel, Dec 25, 2012.

  1. lorashel

    lorashel New Member

    Hi, I am brand new here but very thankful to have found this as I hope I can talk with people who understand me.

    I was just recently diagnosed with Hemochromotosis, which I will call HH from here on, and I had already been diagnosed with fibro. The only reason we even found any of this out is I had 3 surgeries this year and after each surgery I developed more pain.

    Right now my pain is mostly in my knees, ankles, feet, lower back, hips, shoulders and occasionally chest pain.

    My doctor says he cannot tell what pains are from HH and which are fibro.

    I have had 2 phlebotomy treatments, my third day after tomorrow and I find no difference in my pain levels even though my levels have gone down.

    My week consists of sleeping, being forced to eat to take my pain killers, having phlebotomy treatments and having to use a walker to get anywhere.

    No one gets it! I am so tired on a normal day, on treatment day I sleep the whole day after it's done and have to be woken to take meds and eat. I have no energy for about 2 days after.

    I do not feel like I am a real member of society.

    I have applied for 2 different disabilities, waiting on that.

    My partner and I had just purchased a property where we were going to build our dream business, I feel like that dream will not happen, not just for me but my partner too.

    I feel like a horrible girlfriend, it hurts to be touched, I have no sex drive at all!!! I am too weak or tired to do anything and my partner is basically caretaking me. I am sure that wasn't what was in my partner's mind when choosing me.

    I feel like everyone around me is more depressed and angry with my diseases than I am. My whole family has to be tested for HH as it's hereditary so everyone is kinda angry about that. My 21 year old son goes in 2 days to be tested and he won't talk about it at all. When I try and point out the symptoms he has, he won't discuss it at all. Of course, I know he doesn't want this any more than I did but I am pretty sure he will be positive and I would like to help him through it too.

    I am just frustrated, I am in so much pain, my bed is heated I have a heated blanket as well and a heating pad. I coat my body in antiphlogistine cream every night, I take pain killers 3 times a day and I want to rip my hair out because I hurt so much.

    I cannot do the exercises for fibro because too much blood is being drained to be physical at any level.

    I wish I could be sedated for a full year until the treatment for HH is done and then deal with the fibro.

    I know that no one here has the answers but I just want to be heard without someone saying, "I know your in pain, I hear it all day."
  2. skeptik2

    skeptik2 Member

    lorashel, I am so sorry to hear about this horrible pain you are in and the ordeal you are going through personally, but in addition to that, having to worry about your family having it also.

    Could you explain simply what this is? And why it causes pain?
  3. Mikie

    Mikie Moderator

    I took the liberty of putting in paragraph breaks where you had hit the Enter button to break your paragraphs. Unless you press the Enter button twice, it doesn't speparate your paragraphs with a space between them. It is very difficult for many of us to read posts without those spaces. I would hate to have members be unable to read your post.

    Good luck to you.

    Love, Mikie