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lilbear1978 · 06-30-2006, 10:04 PM

Hey I posted a lil while back. I thought I found a med that has finally worked. I have been on the Fentanyl patch for 2 weeks now. For the first week it was awesome finally I could have a couple hours here and there with absolutly no pain at all and I could sleep with only waking up maybe 4 times in 8 hrs which was amazing for me(b4 was only sleeping in 20min intervals)...So now after 2 weeks I am back to pain all the time and waking up every 40 min with muscle spasms and extrem pain. Yesterday my back was so bad that I had a asthma attack from not being able to breath all the way in because of the pain. I really don't know how all of you cope...My family is no support or my friends they say that I don't look sick so I must be lying just to get attention. If they could only experience what we go through everyday of our lives for only one day maybe they would change there tunes...I miss sleeping....mind you it has been almost nine years since i slept through the night without waking up...I miss waking up in the morning and being able to get right out of bed....I must go and get my heating pad and water bottles and go and relax because my back, hips, neck, knees and head are killing me and i can't type anymore...Any advice would be nice...Goodnight FM Family...Best of luck to all of you this summer...bye bye

MOMOFBOYZ · 06-30-2006, 11:21 PM

Hi lilbear1978. My name is Deena. I am sorry to say this but most of get little or no support from family and friends. My husband supports me the best he can. But really I just do my coping skills: pain meds, sleep aids, wrist band, limping, extra rest (4 yr old and 6 yr old so hahhahha) and just keep going. I hope Bluelakelady can give more input on this. She was the one who taught me that our pain is private and not to share. My Mom is very concerned and helps when she can. But NONE of my friends do or will. After 2 months of trying to explain the pain and disability issues with family and friends I was very angry. Like you they all said I look fine ect.
Blue explained to me that fibro is so hard to understand that half the time we don't get it. How can we expect others to? I finally had to let that part go. And believe it or not the stress of trying to get people to understand made me worse. I am on a new sence of peace. I keep my thyroid under check and just keep going. Last Friday I had a really bad flare that caused me to limp and ect all week. I think it is better now. But I don't even tell my husband anymore. He see but I just do what I have to. Keep smiling on the outside even if I am crying on the inside to keep my home balanced and peaceful.
Actually I have a stock answer for most family and all friends and it is this: Oh, I am on the road to recovery, thank you. B/b we may have good days but this is a chronic condition and the reality is I may never feel like my old self.
Blue taught me that we can still live good productive lives even in the midst of severe pain. I clap and sing with my boys even in the worst flare. I push my 4 year old on the swing even when I feel like dying.
I am not trying to preach I swear. I have days when I feel sorry for myself. And long for my old self. But I wake up and start thinking negative thoughts I instead thank God for today. Even for the pain. Thank God it's not cancer. Grab your heating pads and water bottles and think of it like well some people have vitamins or meds and we have our aids we need to survive. That's OK!
I feel for you. My prayers are with you. You always have us to vent to. Just try to not vent to most family and friends. They do not want to hear it. And we are stronger for our courage to face the world in spite of our pain!!!!
Sorry it's so long. I always kill a thread b/c of this. Just have no one but my Mom to talk to.
Love, prayers and thoughts to you
Deena

lilbear1978 · 07-02-2006, 08:52 PM

Thank you so much...Yes I have decided just to start to keep things between myself and ppl who actually understand(people with fibro and my dr.)...I also have 2 children (a seven year old boy and a 2 year old lil girl)...Thank you so much

Glojer · 07-03-2006, 03:34 PM

lilbear, hang in there! Come here when you need to vent. Remember attitude is everything, keep a good attitude try to be positive and don't give in to the fibro. Remember we are here for you.

Glojer

cjsmommy · 07-03-2006, 03:40 PM

I have to agree with Deena. I've stopped talking about it with most of family and IL's. when my mom was ill for a few months with ischemic colitis this past christmas, she got a taste of what I deal with all the time. I think on a certain level she has a better undertstanding and hasn't been as critical of me. She's still not supportive, that's not who she is..just less critical. I post regularly on a nother board and just recently kinda got the third degree...they are the only ones who have been supportive and one of the ladies told me "maybe if you were less negative and more involved with hubby etc, you wouldn't have these problems" People who don't have fibro don't get it. People don't see you laying on the sofa from a migraine or fatigue so bad you can barely care for your child. All they see is that on the outside you look healthy. Focus your energies on positive ways of reducing stress and pain and for caring for your family. One of the things I find most helpful for sleep is meditation. I won't take more meds than necessary so we're on a bare minimum approach here. I hope you find what works for you. Remember, what doesn't kill us makes us stronger. you will be stronger. I've found more strength than I knew I had..more than even hubby knows I have. I've come a long way in two years so it is possible but you have to set your mind right first.

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