Fibro and CFS

Discussion in 'Fibromyalgia Main Forum' started by mamawsandy, Oct 12, 2006.

  1. mamawsandy

    mamawsandy New Member

    I have had fibro for over three years. But I have also had constant and serious fatigue. I just feel weak and think I could sleep all day and all night. I have a sleeping aid at night.
    I never have any energy. I can't cook very much. Fortunately my hubby and mil cook a lot. I can't do housework. I just don't have the energy.
    Now, I know I can't do these things, but hubby doesn't believe in any illness that can't be found with a blood test, so he doesn't understand why I don't do the cooking and house work. This makes our relationship strained.
    I am going to ask my rheumatologist to test for CF tomorrow. I have to know if I have that in addition to the fibro, RLS, IBS, headaches (whiplash), and others.
    Sandyd
  2. mollystwin

    mollystwin New Member

    I'm sorry your hubby doesn't understand! I am fortunate to have one that does understand and it is such a blessing! I do have other family members who don't get it though and that is pretty frustrating!
  3. Redwillow

    Redwillow New Member

    hi mama

    I have a lot of fatigue with my FM too. I am fortunate that I have a wonderful husband who is very supportive. I think one of the reasons is that he came with me to some of my earlier doctors appointments.

    He got to hear what the rheumtologist said to me and the advice that she gave me. It was hard not to believe when a specialist was telling me that I had to pace myself and find ways to avoid overdoing.

    He also got a chance to ask questions and some of them I would never have thought of. I was able to rely on him to remember what the doctor said as well because I was often so fatigued after an appointment that I couldn't remember what she said.

    So if it is possible consider taking your husband with you to your next appointment.

    hugs Redwillow
  4. TerryS

    TerryS Member

    I'm pretty new at this, but it's my understanding that to get a diagnosis of CFS you have to meet certain criteria and it's by process of elimination. Although, you may very well already meet the criteria and have had everything else eliminated via blood work.

    The CDC has info on the criteria for CFS.

    And, yes, see if the hubby will go along on your next visit to the rheumy and maybe he will be more understanding.

    I think my hubby was skeptical of my FM/CFS diagnosis (although he never admitted such). But then the rheumy ran some tests and found that I have anti-mitochondrial antibodies (which points strongly at a liver disorder), and he told me that these antibodies can cause great fatigue. Once my hubby heard that, he was much more understanding and supportive...especially when he thought maybe my time here is more limited than we would have ever thought (hope that's not the case!)

    Anyhow, good luck to you...hope you can somehow open up the hubby's mind, heart, and eyes!

    TerryS
  5. MeNow

    MeNow New Member

    Sandy.

    I have a wonderful man he does help as much as I need. The only problem is that I don't ask. I have to learn. He doesn't see or know what needs to be done and he told me over and over to ask. Fibro is robbing us of what could be our best years ( retirement ) It is so frustating I don't accept to be that way.
    My husband came with me to the rheumy apt. and he received his education at the same time than mine. When ple are asking too much of me he is the one who will tell them that I am having a bad day. The rheumy was real big help especially that he told me that i was not crazy......I was questionning that for a while. He (dr.) did a skin test ( not really a test ) he did scratch my bak with his nail and showed hubby the exagerated reaction that in his experience is part of fibro. That fibro react 10 folds what "normal' people do.I don't think I hace FCS but I am tired more easily.
    Help yourself and take him to the dr. apt and maybe talk with the dr. before explaining that your hubby has a problem understanding your health issues.
    Good luck for tomorrow. Menow
    [This Message was Edited on 10/12/2006]
  6. Mikie

    Mikie Moderator

    Your hubby is in denial. Unfortunately, there is no standard blood test for CFIDS right now unless they do a genome mapping. Research has found several mutated genes in PWC. Unrelenting fatigue of three months or more, after having eliminated other possibilities, usually brings a diagnosis of CFIDS. Ask the doc to look in your throat to see whether you have red crescents in the throat. Many of us do. My own doc was amazed when I asked him to look and he saw them.

    You can get tested for a variety of infections which are common to us with CFIDS. Most of us do have chronic infections. It is important to address them. Many docs try antiviral meds empirically with good results. Unfortunately, getting the infections under control isn't a cure but it sure helps with the healing. We are also prone to fungal and bacterial infections.

    Does your husband believe in wind? No one has ever seen wind. What we see are the wind's effects. It is the same with CFIDS. Just because it cannot be proven or seen doesn't mean it doesn't exist. It's harder for our loved ones to go through the grieving than for us sometimes. It can produce denial, anger, depression, trying to bargain with God, and, hopefull, acceptance. Acceptance doesn't mean giving up or giving in. It just means using one's energy to move forward instead of wasting it on anger and denial. Anger and denial take a tremendous amount of energy. Perhaps some grief counseling for you both would help him. I highly recommend it. We all grieve for our old lives once we get sick. Good luck.

    Love, Mikie