I'm wondering if any of you have fibromyalgia with small children?
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I have recently been diagnosed with lupus. Of course I've felt the effects of the disease for the past several months. I am a mother of a 5 & 3 year old. Most days I do okay, but on my bad days, everything seems so impossible. My husband works afternoons & evenings and helps in the mornings and days off. I've been considering getting an extra hand to move in with us and help in exchange for room & board. It's hard with young children because they need so much of you as a mom and all you want to do is give them as much of you as you can. And sometimes it's really difficult.
Hi Connie! Adela is right, first find out what you're fighting...there may be specific help once you know for sure. Then as crazy as it sounds some days...exercise DAILY!! On my worst days that may not include much more than stretching, but it is key! I've been in physical therapy for over 20 years, and I'll be doing therapy for the rest of my life. I don't think of it as therapy anymore tho...it's just like brushing my teeth...ya gotta do it!! Get the blood tests...half the battle is knowing WHAT your fighting! God Bless!
Nicole, mom of 2 with Lupus/MCTD, UC and Fibromyalgia
Sally - posted on 11/14/2008
I have two boys, and 8 yr old and a 1 yr old. Some days are harder than others. Especially when I feel fatigued and just want to be lazy on the couch. Think you just have to find a system that works for your family. And hopefully you have good support behind you (i.e. husband).
Julene - posted on 10/27/2009
Hello ladies I have a call that I think all of you would really enjoy listening to for people with Auto Immune problems. I would love to share it all with you if you would like to learn more about it you can send me a email at firstname.lastname@example.org and I would love to give you the information for the call. Thank you for your time..
I work from home and Love it!!
Gina - posted on 07/08/2009
I have Fibromyalgia, RA and alot more. My daughter is now 16 so its not as hard as it used to be, but I was lucky to have parents who helped me out tremendously when my daughter was little. I get through my days one minute, one hour at a time. If I feel I can do the dishes, mop the floors, etc., then I do them. If not they wait until I can. No one's coming over with a white glove to check how clean my house is. I know we want to be able to do it all, but with these diseases you have to realize you cannot do what everyone else does, or doesn't. Do what you can. As long as I take care of myself and my daughter, the rest will fall into place. When the baby slept, I slept. You always need extra sleep w/fibromyalgia and so get the rest you need whenever you can. I've learned to make lists of things that I really want to get done and check them off as I go. I've also learned over the years that the more organized and less "stuff" I have around, the less I need to do. This makes daily chores ALOT easier. Best wishes to you.
User - posted on 04/07/2009
Hi I lupus. fibro, and renal kidney failure. I am 30 years old. Its very hard for me and somedays I cant even get out of the bed. I have a set of twins that are 16 and a 11 year old. It is so hard on some days but prayer really works. I have been on my deathbed so many times in the past year, but I go on. Always remember he will never put more on you than you can bare.
Velvet - posted on 02/28/2009
I have Lupus, Sjogren's Syndrome, & R-Arthritis. Sometime's I'm tired of being tired...and then I look at my two-sets of twins with a Down Syndrome Child in each set, and I say, "Thank you Lord for my beautiful perfect Children!" Life is incredible!
Connie - posted on 01/30/2009
hi adela, thanks for the info, i'm thinking it might not be rhumetoid arthritis, because the treatment he has me on, doesn't seem to be working...........i'm scared, i've heard horror stories of having lupus......i can't afford not to work, so i grin and bear it and drag myself to work everyday.....how do you manage your pain?
Adela - posted on 01/28/2009
Hi! I have lupus. My signs are painful, swollen joints, tired all the time but most impotantly the bloodwork the doctors did came back "positive" for Lupus. I was originally diagnosed as RH but after different drugs and no change a new doctor told me he wanted to test for Lupus amd some other autoimmune diseases. If I were you I would ask your doc to do blood work for everything.
Connie - posted on 01/28/2009
how do you know if you have lupus, what are your symptoms? my doctor said he thinks i have rhumetoid arthritis, but the treatment he's giving me, is not working. i can't remember the last time i was not in pain somewhere in my body.....any info would be great.
Orangegloves - posted on 01/24/2009
I have secondary fibromyalgia as part of my autoimmune diseases (coeliac, connective tissue disease, hashimotos) I also have M.E which my doctor believes is also autoimmune. It is really hard. My daughter is 6 months and a few weeks now. We didnt even think I could carry to term and I didnt even know I was pregnant for quite a while as I certainly wasnt expecting to be. I've always wanted to be a mother but it's extremely hard most days. I have limited mobility but my husband is amazing and cares for me as well as working full-time. I also have a good network of friends online who support me during the day, and some family who help out when they can. Basically I just keep my daughter clean and as happy as I can during the day, and everything else gets done in the evenings when my husband is home after she's gone to bed, or at the weekends. She also goes to a childminder who's also a friend of mine for 2-4 hours a week, which gives me a break and makes me feel like she's getting out and doing something so I dont feel guilty about not being able to take her to groups and suchlike.
I have SLE and was also diagnosed with secondary fibromyalgia. My son is a toddler and I had to hire a nanny to help 3x per week. My mother helps me another 3 days and my husband helps in the evenings and on Sundays. I also have someone clean the house every other week. Unfortunately, this is an expensive way to cope, especially in these times, but it is the only way I can maintain my sanity and not wear out my family too much. Luckily I have a very supportive husband.
Jennifer - posted on 11/02/2008
I have Lupus and 5 children, ages 2-11. My 2 year old was born with neonatal lupus and is special needs. It is hard. it took me some tim eto realize that I can't do EVERYTHING and that it is ok if all of the laundry isn't done all of the time or if the floor needs swept but I put it off for a few days. My advise would be to not sweat the small things and don't be afraid to ask for help!
Melinda - posted on 11/02/2008
I have Lupus and Fibromyalgia with a 7 and 2-yr old (with a possible blood disorder in the works too now). I also work two days/wk outside of the home, teach piano (16 students) and manage my Creative Memories business. Whew!?! I have good days and bad ... not to mention two miscarriages in less than a year. GOD is in control and with the support of many family and friends, I keep looking up and try to give it all to Him! It's NOT easy AT ALL ... but I just have to keep in mind that there are so many people worse off than me. It helps to have a very supportive and loving hubby too that helps me anyway he can! Again ... it's not always easy for him either but we push through!
Adela - posted on 10/31/2008
I have Lupus and it is so hard sometimes to be super mom as I call it. I have learned to ask my hubby for help and have learned to let things go. I no longer worry about or care if people can't eat off my floor! LOL! As long as it's not dirty we'll be ok. It's tough I know but you have to take care of yourself before you can take care of your family or house. Set priorities/goals and just check things off 1 by 1. ASK for help - it's not a sign of weakness but a sign of strength!
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