It's in my head ?

Discussion in 'Fibromyalgia Main Forum' started by andrews, Jan 10, 2003.

  1. andrews

    andrews New Member

    My wife spoke to her friend who is an office manager at a Rheumy praactice. The friend says FM is 60 % physical and 40% mental....which I know my wife interpreted this as 100% mental. Now, she thinks all of my pain is a hoax. I shared
    the list of symptoms with her and she especially keyed in
    on the low tolerance of pain. Which I agree I have...it is not made up. I will say now that I don't make the pain the daily object of my focus and don't hang on every joint that is popping, I do feel better about myself.

    Any thoughts?

    Andrew
    [This Message was Edited on 01/10/2003]
  2. karen55

    karen55 New Member

    I'm not sure what you're asking here. Many of us have spouses/kids/employers/friends who just cannot understand how we feel, simply because they have never experienced this themselves. I believe that's why a lot of people say "it's in your head". Also, there are people who have very little patience when others complain. I know my own hubby doesn't doubt that I have the pain I do, but I try not to complain too much to him, it seems like he tunes out sometimes when I do. Another possibiliy is that your wife is having trouble accepting that you are "different" now from the way you used to be. Well, that's all part of "for better or for worse........". Maybe if she learned a little more about this dd, she would better understand what you go through.
    It's frustrating when you go through every day hurting, so even though you ARE hurting, it's good not to totally focus on it. In other words, do what you can do, live your life. You only get one!

    Karen
  3. catgal

    catgal New Member

    Hello Andrew~~One of the things that is so frustrating about this illness is that not only is it misunderstood by health care professionals, but it is often difficult for our mates, family, and friends to comprehend what we are going through, how we can be aching in agony on the inside yet look fine on the outside, or why we were able to do something last year or yesterday--but are totally incapacitated today.

    It is especially confusing to our mates because if we're so sick--why doesn't it show up on any tests. It's hard for people who aren't experiencing this disease to believe in an invisible illness that has so many symptoms that we do often sound like hypochrondriacs {even though we aren't}.

    And what happened to the person they married? That's what we'd like to know also. We grieve for the loss of ourselves while they long for the person we used to be.

    The only thing we can do is to try and educate them along with ourselves.

    Though I have had FM/CFS for many, many years, I have only lived with my mate for six years. Initially, I talked to him about it, gave him some books to read, and explained myself and my illnesses to him as well as I could. The rest was up to him. Though he didn't read the books page for page, he did glance over the materials, hit the high points, and seemed to try and understand.

    Knowing pain intimately is also a lonely piece of business. I don't burden him with how I'm feeling, how much I'm hurting, or what a miserable day I've had. For who would want to listen to that over & over? He can usually tell by the pale, drawn look on my face. I don't alert him about every new ache or pain I have because if I did--that would be my entire conversation. When I return from my monthly medical appointment, I don't bore him with the details because it's the same old thing. And when I am in a flare, depressed, and tearful, I write it all out in my journal and have a good cry in the shower.

    For though I wish it weren't so--he is a victim without the disease. I can't always go and do with him like he would like for me to, and so he winds up going and doing alone some of the time. It is difficult for me to agree to plans very far in advance, because I don't know how I'm going to be feeling, and I hate it when I have to back out on him at the last minute. It takes everything I've got to continue to work while dealing with FM/CFS, osteo/psoriatic/rheumatoid arthritis, severe asthma/allergies, IBS, and advanced degenerative disc disease--so I don't keep house as well as I used to, nor keep the laundry up like I liked to, or cook a nice meal for him every evening after work. It is difficult and frustrating to him at times because he is often as held back by my ailments as I am. So, I don't drive him crazy by talking about and bemoaning my misery to him and making it the central focus of our lives together.

    Instead, I strive for normal conversations about normal every day events. When I know he wants to go somewhere and do something over the weekend, I try and get as much rest as possible during the week so I will be up to the going and doing. On the occasions when he asks me how I'm feeling--I don't make him wish he hadn't asked. I just give him a brief answer without going into details. When I need help with something, I don't whine--I just ask. When I can't sleep or am sick in the middle of the night, I deal with it myself. I don't complain; I don't spend my time focusing or obsessing over my ailments; I try and take care of myself and live with them. This is the only way I know to have as normal a life as I can for myself and for "us". I use my journal and this support board for all my venting and release. I work at keeping my relationships with my mate, family, and friends as normal and enjoyable as possible. I work at not taking my illnesses out on others or life. And this isn't being a martyr...it is simply trying to live as best as I know how, as normal as I can, taking care of myself, and trying to remain an enjoyable person to be around.

    While you are experiencing the disease, your wife is trying to make adjustments around an invisible disorder that has stolen her husband. It takes time, patience, education, caring, and communication at a reasonable level. Invite your wife to read the posts on the Board and join the caretakers forum (or whatever it's called).

    Take care Andrew and keep coming back. Carol....
  4. Mikie

    Mikie Moderator

    This may eventually be the marker for diagnosing FMS. People with FMS have been show to have a higher than normal amount of Substance P in the spinal fluid. Substance P is what amplifies our pain to such an extent.

    It's funny too, because I have a high pain tolerance most of the time. However, if I hurt my hands or bit my tongue or cheek, I'll swear like a sailor. I totally overreact to certain types of pain. It's whacky!

    Love, Mikie