New here...looking for any support, please

Discussion in 'Fibromyalgia Main Forum' started by CinCA, Nov 15, 2005.

  1. CinCA

    CinCA New Member

    Hi...I live in southern California and was dx'd with chronic fatigue "officially" by my doctor today. Honestly, I've had the symptoms for a long time, but today was the first day I asked her, "So...is this chronic fatigue?" and she said yes. It was no new info. - I had come to this conclusion several months ago.

    At least I don't feel like I am necessarily going crazy anymore, or developing an early case of dementia. But it still is frustrating in that I have been trying to fight this for the better part of 2 years and have not made much progress. I also have a very busy and high-functioning autistic (although maybe "off the spectrum" now) 4 y.o. daughter, who never, ever stops. In addition, hubby works long hours and doesn't believe anything is "wrong" with me, per se, except my attitude, and of course the fact I don't eat enough/"right" as well as don't exercise. I am a "stay-home mom" and am now to the point it's all I can do to shuttle my kid to school, gymnastics, ballet, etc. as well as stay somewhat on top of the laundry, dishes, and keep my plants from dying.

    I'm not trying to complain, per se. I know I probably have it really good in that I can at least stay out of bed a "normal" time of each day, and I probably get an awful lot done considering how wiped out physiologically I am. The main reason I'm posting here is I have very few "real" friends where I live, despite having tried to "click" with people for the 10 years I've lived in CA, and I have ZERO people whatsoever in my life who can understand let alone support me in fighting CFS. Even hubby constantly piles on more stress with his expectations of me. He doesn't get it at all. And of course, my daughter is enough to exhaust even an incredibly healthy person. My one doctor is out of ideas, while another's ideas all seem to cost over $100 each, and between my health and all we've dealt with for our kiddo, we are completely tapped out financially.

    I'm just wondering how you all get support/hugs, whatever, be they real or virtual, and if anyone has found anything that has helped them feel better. I have such a high amount of constant stress in my life that I just cannot cut anymore than I have, so I need to find better ways of dealing with it. Exercise has always helped, although now it leaves me more tired. Any ideas for getting into a program again, as well as putting on weight, as I am very, very thin?

    Thanks for any help anyone can give, and best of luck to all of you.
    C.
  2. wildwoodlane

    wildwoodlane Member

    that you are having so many problems. I am older than you by quite a bit and have fibromyalgia but certainly sympathize with you for what sounds like a very difficult life. Can you check in your area for a support group for people with CFS? This message board is a huge help, too. I am sure there will be others responding to your post with some helpful tips. It is so very, very hard to live with a chronic illness when your spouse and other family members don't think anything is really wrong, that it is all in your head. Does your doctor know about the stress you are having and can he/she help with medications?

    All for tonight but just jumped onto the message board before bedtime (11:30 p.m. in Kansas) and saw your post.

    Hugs to you from somebody who has been through the mill during her life from one thing and another. There will be better times!

    wildwoodlane (Garland)
  3. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    You'll find it does alot for your morale just to have that.

    First thing you need to do though, is get your stubborn hubby on board. If you finally have a doctor giving you a dx, then maybe drag hubby in if he doesn't want to believe it from you. I don't know what it is about men, but sometimes they have to hear it from the doc, esp. if that's another man. Or get him to ask questions on here and vent about how it is to try and understand your limitations, that has helped some spouses so much. He'll get lots of responses, I guarantee.

    It seems to be really hard for some spouses to get and accept it when they married a healthy spouse and then this baffling disease creeps in and changes everything. I'm glad I met my fiance when I was already sick. I wouldn't be engaged to him if he didn't totally get it and was not supportive.


    Jeanne
  4. DLsGroovyMoM

    DLsGroovyMoM New Member

    hi and welcome
    I can't say that I really have much to give you other than a hug and to say I understand. I can count on 2 fingers the number of friends I have and neither of them really get my dd. It does make it lonely when you can't at the least talk with someone who will empathize. You may find that this board becomes your best friend. There is a ton of info and just as many people who will listen to you and send some cyber hugs your way. I am really sorry your hubby dosn't seem to be very supportive. That in it's self is very stressful I am sure. If you haven't done it yet do a search on the board for "letter to normals" and maybe give him a copy to read. If you can get him to read give him all the info you can to try and help him understand better. I have a wild as a buck 2 year old son so I feel you on that aspect too...I never knew children that age had so much energy and strength. It is a struggle many days to do anything much less chase after him.
    I will be praying for you!
    Love and Hugs
    Amy
  5. jaltair

    jaltair New Member

    FMS / CFS are lonely illnesses because people cannot relate unless they have the problems. These aren't illnesses that are definitive as far as cause, or even symptoms. Everyone affected may be affected differently. It's kind of like you tell someone that you have FMS or CFS and they say, "oh, yeah . . I've heard of that" and then a loud and quiet pause - I say loud, because when someone doesn't know what to say, they are "loud" at it. Friends begin to forget what you were like before you became ill, and start believing things that aren't true, such as the reason that you aren't as active is because you're lazy. Hmmm, are these friends?

    I would recommend that you locate a support group. I don't know what part of Southern CA you live in, but there must be one that's not far. Many doctors who deal with FMS/CFS have support groups for patients.

    I have FMS / CFS. You may read about me if you choose in my profile. I can understand your fatigue and having to deal with children. I've stated at times that I raised my kids from the living room sofa!

    For gaining strength and weight, I'd recommend getting some kind of supplement. The RiteAid brand isn't bad. I've used it when I don't feel like eating breakfast. One way to use it if you want to gain weight is to make a milkshake with by adding ice cream. It's really good!

    I hope this helps. Please come back and visit again. There is a lot of great support here as well as great information on this site. Check it out.

    Warm wishes, Jeannette
  6. CinCA

    CinCA New Member

    Thanks, ladies, for your helpful posts! I really appreciate it, and have a good night!

    C.
  7. CinCA

    CinCA New Member

    Lastly, hubby really does try the best he can. It is hard on him having a wife who's sick with CFS, a kid who has been "high-needs" since day 1 and got dx'd with autism a year ago, despite her doing so well now, and having a very stressful job that is our family's sole source of income at the moment. I am fortunate that he really does try to help, and he is wonderful at caring for our daughter pretty much the whole time he's home (evenings and weekends). We have had some serious issues (major stress in our marriage with all the stuff with our kid), and sought counseling the first year she was born (didn't help), but I think we are past the worst of it and have at least an "understanding". For this, though, he just can't really give me what I need. He has been strong and healthy his whole life, an athlete, and I can't expect him to relate. At least he lets me seek the alternative medical care I've found some help with (I see a naturopathic physician).

    As for support groups, the only listing I found was a phone # for someone in a town about 30 mi. away. I'll give them a call tomorrow and see if the group is active. Where I live is strange...there are so, so many people out here, but people are very into themselves and there is no overriding sense of community. That is what makes it hard, but I am a very independent, self-sufficient person. I just wish I didn't have to be that way so much, but it is what it is. I learned to develop very thick skin when my daughter was little. She had severe colic and screeeeeammmmed for months on end. Then she became a "runner" and would just take off wherever we went, and/or throw the most horrible, dramatic tantrums! I got so many "looks" from people who must have thought I was the most awful mom. So I got over all of that a long time ago, as well as found out who my friends really were!

    Thanks again, everyone!
    C.
  8. PVLady

    PVLady New Member

    Welcome to the board. I have lived here in CA all my life and am sorry to hear you have not been able to connect with anyone since moving here. I guess everything is so spread out, and different. I don't know where you are from originally, but I do understand.

    It sounds like you really have your hands full and are a true hero to handle all you do. Yes, I agree, even a healthy person would find it challenging.

    Just curious, if you don't mind saying, what city do you live in? I am in Palos Verdes (S. CA).

    If you are in S. Calif. there is a doctor who has done alot of work with CFS patients here in Torrance. His name is Dr. Holtorf. (He has a website you can pull up, I believe it is called Fibro and Fatigue Center). Many people here on the board go to his clinics and seem to be happy with the results.

    Keep coming here and you will make alot of new friends. I have been coming here over two years and have gained so much.

    Take care
  9. CinCA

    CinCA New Member

    Hi, PV Lady!

    Small world...my in-laws live in RPV, and we had our wedding and reception there (Wayfarer's and La Venta), many years ago, of course. I actually am heading up that way on Fri. to visit a good friend who is an "aunt" to our 4 y.o. daughter and has a girl her age (they are great friends).

    I live over an hour south of PV, in southern Orange County, so going to Torrance on a regular basis would not be practical. I am doing okay treating myself homeopathically and with various supplements, and I am really hesitant to go back the M.D. route because of my awful, awful history of bad responses to pharmaceuticals. Still, I'd be curious about this doctor's practice and would love to talk more. I feel like there still is more I can do to shore up my reserves and have more energy.

    Take care, and thanks for your post!
    C.
  10. lovethesun

    lovethesun New Member

    I find the people nice here(I live in Ventura)but it's like any state.Some areas are friendlier than others.Anyway,Welcome to the board.We are here for you!linda
  11. CinCA

    CinCA New Member

    Thanks, Linda, for the warm welcome! Yes, I've heard good things about the Ventura area, and I hope you are getting settled in. Best of luck, and again, thank you.

    C.
  12. piebear

    piebear New Member

    Welcome to the board! It is a Godsend for me so I'm sure it will be for you too. I'm sorry to hear about the things are struggling with. Hang in there! =)
    I live in the Ventura area (Port Hueneme) as well. Been here for 3+ years.