Hi everyone my name is Nicole I was just diagnosed on 11/18/2013 with fibromyalgia. I was diagnosed in July of this year as well with Lupus. I am currently seeing a new rheumatologist and he is rechecking my diagnosis of lupus. I have to daughters 11 and 6. They are everything to me. I feel a lot of times that people think this is just in my head or that I’m being a hypochondriac. Today is not a good day at all my stomach is a mess and my pain is at 10. I try and get a full night sleep but get woken often by pain specialy in my hips, knees, shoulders and Lower back. I am currently out of work but hoping to get back after I see my dr again on December 9th. I try and be super woman or super mom as my kids call me cause I hide my pain and try to just well pretty much do everything. Well that is all would love to hear from anyone willing to share there story or give info on fibro or having fibro and lupus?!?!
Welcome Nicole! I have fibro,depression,anxiety and autoimmune disease. I've been dealing with the pain,tenderness,swelling,burning,confusion, and grief over 2 years now. I didn't want to accept that my health changed and my life would have to also. I found myself trying to handle everything, smile through the pain, have my symptoms flare up, take steroids, be down for days/weeks and repeat the cycle all over again. My dr. finally told me to quit it. He said the trick wasn't to constantly be on steroids, but rather slow down enough so the symptoms don't flare up so easily. Easier said than done..
I'm not working either. Frankly, I don't make plans for each day anymore. I just take each day as it comes. If its a relatively pain free day, I do a little more. If I have pain...then my activity slows down accordingly.
Nicole, it takes a while to learn YOUR fibro, what YOUR triggers are and how YOU respond to different meds. The best advice I can give is, listen to your body. Educate yourself. This is NOT in your head....its very real.
Wishing you the best,
Rosie
hi nicole.. welcome here. i will write more another time. i did want to say hi to you!! xoxoxoxoxoxox
Hi Nicole! I have two daughters too, 7 & 2. And NO you are definitely not alone in people thinking it's all in your head or that your a hypochondriac!! I've been referred by more than one doctor (among others) to get psychological help - because it was "all in my head" or I was told to just "knock if off." It's really hard for people to grasp for one and it's a lot easier to dismiss someone who looks fine, then to try and treat an "invisible" disease. I'm in my late twenties and have been suffering for over ten years. And have a host of associated/secondary conditions. So not fun! =/ I've driven people nuts, because "I'm lazy." Tired all the time and so on. I'm not one to show my pain either - it's taken my husband many years to get me to relax even a little on that. I even had a hard time telling the doctor it hurt - guess I thought if it didn't make me scream I shouldn't say anything...think that was four or five years after I first went to doctors.
I've tried to be super mom or at least seem/look like a normal mom. My health completely crashed last November and I've made very little progress in recovering since then. In part because of money/insurance issues - makes it hard to see my doc that specializes in FM/CFS. He says number one thing he wishes for every patient to get is to pace themselves!! It's really hard I think especially in the beginning. My husband has actually had to make a "rule" that I don't push myself. It's hard when I see all he and our seven-year-old are trying to and I can't hardly even help a little. I'm hoping to one day be able to at least help out again...but we'll see where life takes us. I'm not working either and have actually just applied for disability. =/ Not my first choice, but at this point my only option.
As far as information goes there are a lot of sites, but I like this one best! http://www.cfidsselfhelp.org/ I'm taking their self-paced class to try and do all I can do for myself. Often takes years to really get on top of, but things in life happen and can set us back again... anyway, it has a ton of information and hopefully will be of some help, at least for the FM part!
Praying things go well for you!
Hugs,
Butterflydragon
Welcome Nicole!
I was diagnosed with Fibro a few years ago. I am also a diabetic. What you need to know is this is not in your head, we are living with true pain on a daily basis! I am also guilty of trying to do too much! I pay for it on days my pain is not too bad, but then am down for days after. Listen to your body and when it says to rest, do it:) Educate family and friends about your Fibro! It took my family almost a year to understand that I was not the same person as I used to be! Still there are times I have to remind them because I do not look like I am in pain:) Hang in there, we are all here for you:)
Thank you everyone for the kind responses! And for all the wondeful info! My fiancé also the girls father has his good days and bad days dealing with all of this he knows I’m in pain but he also gets tired of hearing about it so I try not to talk much about it so it’s very nice to have somewhere to come and vent so I’m not putting it all on him. My parents are awsome people but my mother a times thinks I’m just being lazy and will say in her own special way suck it up and get over it. As soon as I see the dr again on the 9th and have all my answers I will be giving her a lot of info to maybe open up her eyes on the situation. I have a lot of friends that are very supportive which is a blessing. Again thank you for welcoming me with open arm.
Excellent advice Rosie.
Jackie S.
Thank you Kelly for the kind words.
remember to be kind to yourself this is a long road ahead of new symptoms that can arise,,,there is a great reading you can Google" The Spoon Theory" It is great to share with others and a reminder to ourselvesyou can also talk with others in the chatroom....if you are lucky to find people there
warm welcome Nicole
I’m so glad you have joined us & introduced yourself, it’s a great way for others to get to know you
Take one day at a time, being super women & super mom is something we can all identify with , prior to fibro I was always on the go constantly , burning the candle at both ends sorta, fibro has a crazy way of slowing us down, forcing us to choose what we use our energy on
Accepting this change can be very difficult , the guilt can be overwhelming … It takes a lot of knowledge & understanding about fibro to learn how to overcome this , being on this site has helped me with this & so many other things, stay connected with us 
Please know this is not in your head !!! I recently had a minor surgery and when I woke up from anesthesia although I had a lot of abdominal pain , my body’s pain was gone , I didn’t want the drugs to wear off , as I sat on my couch that day , and with each passing hour the pain slowly came back, I sat and realized just how much pain I live with each day , for 6 full hours I had a glimpse of what it felt like to not have this fibro pain. It was such a realization that this pain is real, we just learn how to deal with it , to live with it and try and function, this is what makes the fatigue so debilitating, we are constantly struggling.
Take it slow, it’s a hard rule to learn with young children , but learn your limitations , let go of the guilt and take care of your self ! This took me a long time to learn , but with fibro it’s a must !!!
Many hugs & blessings
dee B