is this my life from here on out

well, i got a decent nights sleep last night, woke at 8:40 a.m not wanting to get up still. Thank goodness i have the nanny today. I called my primary to see if there was any hope of getting a work in. its december and i do not have one tree up:( usually have 4. Ive had high hopes of getting in the xmas spirit for i believe this would be a truly exciting year for my 2 yr old. just can't find the energy and cry because i can't get these things done. anyway no openings, but his nurse asked what was going on and i talked with her about all the nuvigil for my chronic fatigue due to fibro, so she seemed like it wouldn't be a problem was gonna talk to my primary and call me back.. long day... she finally called back and said he couldn't call it in because it is not indicated for fibro fatigue. so i feel my life is over I'm not sure that it would've worked but i don't understand why i can't try it? there are so many other drugs that are not FDA approved for fibro that they put us on all with so many worse side effects than nuvigil. Do i just have to accept this is my life my children seeing me in pain and tired most days. and when i do make it out to a school function my hair and makeup is not done and there is no joy to be seen. i would rather die than to go through the rest of my life like this. no suicide thoughts, just realizing this is my life, and theres no hope for anything better, i feel it is taking a toll on my marriage too. My husband being a physician has to be one of the most understanding people but it takes a toll on him too, and somethings he just can't understand because he is not going through this. it also doesn't help it works out of town 3 on 3 off. I really feel alone right now. used to feel guilty for the nanny, since I'm a stay at home mom but since he is away so much i feel like a single mom and justify that. lately i feel guilty because i have a nanny 2 days a week and on those days i sleep instead of get stuff done.. she probably things I'm the laziest person on earth.

Also, a psychiatrist would be much more knowledgeable about the drug and would be much more willing to prescribe it "off label"...even though it is not FDA approved for Fibro does not mean it cannot be prescribed for Fibro, so the Primary Care doctor is lying quite frankly.

also i have an appointment with my primary, for dec. 19. which i adore him and do not wish to see anyone else. the nurse was just trying to help I'm sure, but i know i would feel much better talking to him in person.
thanks again

Tton,

I am sorry to hear what you are dealing with. i had my daughter at 34 and It was before I had Fibro. I know it wore me out then, so I can't imagine it with Fibro. I do understand about wanting to do things with your child. My daughter is 16 now and we are doing college visits. My husband had a hip replacement this year so he is not up to the visits. It isnt really his best thing anyway. I have been "saving up my spoons" like crazy so that I can go on the trips with her. Some are one day and some are overnight in a hotel. (I went from a person who traveled all the time to dreading travel).

The resson I tell you that piece is to explain that I understand wanting to be the mom in your child's life that you have pictured. I started working with a chronic pain therapist recently and she is helping me not just identify that I sm going through the stages of grief at being ill/having Fibro, she is helping me learn to face that I may not always be able to do the things I want with my daughter. I am working on small adjustments at a time. I really want to be the Mom she will remember as we get so close to her leaving for college. It kills me every time I have to take a break instead of jumping on the next thing with her.

I anp learning when and how to share that with her and we are working through it. She has been more patient than I expected and i try to focus on making the time we have a lot of fun.

Kids are wonderfully adaptable and fun I thnk you will gt into the rhythm of what you are dealing with and make your own communication aand fun with your child. First you have to take care of you. I wish you luck in finding your own comfort and rhythm with how things flow.

Yes. It is the one thing saving me right now. My primary is on extended leave and his fil-in prescribed it for me in October. It's been very helpful. However, since I started taking Lyrica (November 12), it has been a little less effective. I took one tablet of Lyrica at first. The first couple of days were iffy but then it got better. On Sunday (11/30) I started taking a second dose because the Rheumatology N.P. had told me that the single dose might work for a while and then wane a bit and then I might want to go to a second dose.

Since then, I'm having trouble with focus and concentration. It takes most of the day to get "tuned" back in. I know I'm on the lowest dose of Modafinil, but am trying to control my "better living through chemicals" to some extent. I was trying to give the Lyrica a few days to catch up with me, but am thinking I might have to go back to one. i couldn't drive myself this morning for an appointment and my husband had to stay home. he can work from home, but I feel badly because he can only do that so much and i hate that it's because of me being dizzy.

i will say that with Modafinil, I have finally been able to get things done at work. I also made it through 3 of the 4 college days that we have this fall. I just really wish there was a good way to sort out all these meds, how they go together and when to say "enough" on trying things out.

I am glad you mentioned laundry .... I think I am very behind, lol.

Jenni,

I can definitely relate to those thoughts. I have three kids and my youngest is 2 as well. I got Fibro right after she turned one. I hate that she see's me like this.:( It's not fair to her. I often get upset thinking....that I really have to live the rest of my life like this? And, I KNOW there are people out there dealing with issues far worse then this but it's difficult none the less. Especially when you go from living a completely normal, healthy, active life to....this. We DID just get our tree up and I was in awful shape that day too. BUT, I forced myself to do it. I won't let Fibro ruin my holidays or take my daughters Christmas experience away. And, you know what? I feel better seeing that beautiful Christmas tree up!:) I hope you feel better soon. There are better days ahead!

~Angie