As 6 years have passed and my Fibromyalgia has progressed my life has changed right before my eyes. I now have to learn how to cope. I have to learn how to grieve for the loss of my old body and my old life and accept the changes. But how does one who is so independent, who is so self-sufficient just one day accept the new ME??? Wow!!! The road is so difficult, the road is very challenging. I have a caregiver 24 hours a day who bathes me, who clothes me, who puts me to bed, who cooks for me, who cleans for me, who washes my clothes, who combs my hair, she helps me in my wheelchair or lets me walk my very short distance across the sidewalk to the next building to an appointment ..... but I can brush my teeth and I can feed my self ...... and yet, I still wonder though...... when will that end????
Nobody said the road would be easy but we have to stay strong. At my stage of the disease there is so much assistive technology out here that can help you, even if you can not finish a sentence or even think of the words to say. I was fighting for answers even after all the specialists kept saying, "there is nothing more we can do, we have exhausted all of our means and your disease has progressed to far and you have deteriorated so fast," but I would hear," No there is something that will be done and there is help for me." Yes, there were many times I would get so pissed and I would cry and I would cry then..... I would research and research and I would ask questions and ask even more questions until.... I ..... was satisfied and it was what I wanted to hear...... and what would benefit me. So never give up. There is so much out here for all of you. You have to try a variety of medicines, therapies, vitamins, minerals, herbs, spices, diet changes, etc..... everyone is different, you have to decide what is best for you.
If you have read my personal info you would know more about my condition. I am fighting a long hard battle. I believe in my heart that if I can make it you can too. it is a learning experience for you, family and friends. We all have to learn about the changes that may or may not occur. Mine happened so fast that I had not time to prepare, just like a car accident or death, you just never know. I am always here to help you through and will answer questions and if I do not know the answer I will get the person who does.
God Bless Stay Strong Positive and always Thankful in Prayer
Thank you for sharing your story with us. You are a very brave young woman, and my heart goes out to you. Thank you also for reaching out to all of us, I imagine with combined efforts, we could write one great book in this group!
Your story will help keep us strong and focused on being as well as we can for as long as we can and for being grateful for the things that we still can do, even if they seem to be dwindling, or may appear to the well to be only small triumpths!
We are all so very glad to have you with us, we always celebrate the good here!
Blessings, Gianna! I love you! What an inspiration you are to us. . . This is Irma - 61- diagnosed 8 years ago! Never give up - my doctor says that fibro is like cancer - IT CAN GO IN REMISSION! THANK YOU FOR SHARING. . . GOD BLESS YOU AND PROTECT YOU ALWAYS - IRMA
There is always something new around the corner, we have got to keep the faith, hold on to the hope! Always! There is something out there to help you Sid!
Gianna, I too am new to this site and I LOVE it. Everyone on this site is wonderful and gives you good ideas to try, gives you never ending support and most of all has walked in “our” shoes and that is a rare gift in this suck it up it can’t be that bad.
I have the best husband in the whole universe. He has finally learned how much this damn disease has effected me. I don’t know if I would be alive if it weren’t for him and his love and understanding.
Gianna and to the rest of this wonderful group I pray that you have that someone like my husband in your life trying so hard to make me feel better and never giving up the support even though there are days and days when I can’t even get out of bed, my husband steps in and takes over for me.
I know that it is so hard to except that our bodies are at war with ourselves and that war is getting harder by the day to fight 24/7.
Then to make things even worse we have to deal with family, doctors, specialists and friends who all think this disease is just in our heads and if we just get out of bed everything will be fine. We all know that is bs. And it is so exhausting not only to have to fight our disease we have to fight with our families we love.
Then we come to the point were even taking a shower is too exhausting. Making something to eat is too exhausting, so we don’t eat. I could go on and on.
I WANT TO THANK EVERY INDIVIDUAL IN THIS EXCEPTIONAL GROUP FOR ALL THE SUPPORT, GUIDANCE AND UNDERSTANDING YOU ALL GIVE US EVERYDAY. Also thank you to Ben and all the others who made this site were we can go for help. This site has changed my life in so many ways there is too many to count.
It's always good to hear such a positive attitude despite all the difficulties people face on a daily basis and for the rest of time. We all encourage each other by demonstrating our abilities to overcome adversity.
Thanks for being an inspiration to the group. It is so gratefully appreciated. We are strong, born survivors!!
THANK YOU ALL WONDERFUL PEOPLE - WE ARE SOOO SPECIAL. . . Flowerpower - I get so dissapointed in myself when I cannot do what you are describing in the last paragraph - that really described how I feel. . . anyway, my doctor wanted to use accupuncture but my beliefs do not allow it. . . some people say it is very effective. . . When I am in bed I watch TV, otherwise my mind would be torturing me - then I feel guilty because if Christ lives in me and I am his temple how can I feel this way. . . (torture thinking). . . I have to go - I LOVE YOU ALL - HAVE A COMFORTABLE DAY - LOTS OF GENTLE HUGS. . . IRMA
Aloha: I've had fibro for 3 years now. It started gradually, and has gotten worse, despite many attempts on my part for different treatments, both medically & alternatively. Everyone is different, some people say acupuncture helps, but, unfortunately, it did not help me. I had a very gentle massage yesterday & it felt wonderful, loosened up my neck & back. I think we all need caretakers. I am married to a very understanding, caring man & he has helped me with my transition. If I can't do something like housework/shopping, he takes over, never complains, just knows when to take over when I can't. I had to stop working after 34 years with a wonderful company. I still feel lost in a way. We all look forward to retirement, but if your not healthy or can't get around, it's not much fun. You are right, we can't give up. There has to be something that will finally work for us fibro sufferers. I am constantly researching, like you, and experiment with different things I read or hear about. We can all vent here & understand each other. Nobody can imagine the pain we feel everyday, year after year. It is very draining physically & mentally. But, we cannot give up, lets all keep researching & sharing our thoughts. That is what this group is all about. Hope you are all having a good day.
Your letter completely humbled me. I whine when I feel the tiniest bit of pain and yet here you are, struggling like a lioness to fight this hideous illness! What an inspiration! I don't know where you get the courage to do as you do, but bless you for it. It's remarkable that you keep on fighting after all of this.
This is the first time I've heard of a person with such an extreme range of loss of functionality due to fibro. Do you have anything other than fibro or is it all from fibro? If not, how utterly awful that fibro alone has done this to you. I'm really quite speechless.
Regardless, I'm just so impressed with your spirit and will remember it and the spirit of others here during my own fight with fibro. Thank you for such a remarkable letter and I hope you do find better treatments. My rheumy thinks much better pain relief will be available within the next 5 years as much fibro research is being done...
Thank you, Gianna, for this touching letter. I don't give up, no matter what. You are inspiring to me, and I'm sure to others on here as well. God bless you and stay strong as well.
Thank you so very much. Fibro is the main cause of all of my difficulties. I have such things as GERD, IBS, Diverticulosis, Migraines, Bilateral Bursitis and so many cognitive dysfunctions that I can not name them all and also many other things I can't even remember.
I have a very supportive husband who bathes me, clothes me etc... I do have support from my family as well, but most of all I have to be strong for my self. The strength from within is what keeps me going.
I have learned to stay positive and prayerful through my challenging journey. I tell my self everyday there has to be a better way and I will be victorious.
I will keep you in my prayers. May God continue to strengthen you and give you the courage to continue your fight as you journey through your battle.
Gianna thank you for sharing your story… My heart is touched, your strong positive attitude is such an inspiration ! I look foreword to reading all that you have learned in your research, I know that your contribution on this site will be such a blessing to all of us !
Hugs & prayers
You are very lucky Flowerpower. My husband still has no interest in learning about fibro, and he complains constantly about how he "has to do everything". I have a full time job in an office, a side job selling avon, I go to school online, and I have started personal training with a special diet. Without Fibro, I think he should help more because I'm exhausted. But I have it and I wish he'd just be more supportive. He thinks its all in my head. He thinks I make it up for attention. It really is depressing. I'm constantly in the wrong with someone...husband, boss, etc. My fibro is just getting worse, and i'm wondering how much longer I'll be able to work. I'm only 26 and it feels so devastating to think it. I've always been career driven and I don't know how to just be still. I hate fighting and feeling like I'm always wrong. :(
Newtothis2012, I am also new to this I thought I was just suppose to be in pain all the time. My husband says that I need to exercise more and consequently I would have less pain. My job is pretty understanding, I work for a Gynecologist and she is really cool about my pain, but I have 2 young daughters who I try my hardest to hide this from. Oh an my husbands family says there is nothing wrong with me, I am just overly dramatic!
I understand where you are coming from...... It is not easy when you feel like you are going through something alone...... I am here for you..... I know how it feels when you try to work out ....others may think it relieves the pain but it causes more ...... Your husband may not understand now, but give him the room to grieve the loss of the old you and learn how to accept the new you.... He also has to go through a change just as well as you..... give him the room to express himself the way he knows how, help him in the ways you know how, allow him the opportunity to open up and express his feelings.... open the avenues of direction so that he can have the opportunity to learn about the changes in your life and the expectations ....... In your time explain to your children to their understanding what you are going through, their is nothing to be ashamed of. I love when my 2 year old grandson tries to push me in my wheelchair, or help me put my socks and shoes on and even tries to fix my cereal in the morning...... Other people will talk about you till the day you die, but does that mean that you have to live by what other people say???? Stand strong.... If you are hurting, you are hurting, so what can someone say to you that will change that???? NOTHING......
You are Strong, You are a Conqueror, You are Victorious, You Have Fibromyalgia Fibromyalgia Does Not Have YOU, You are Blessed with 2 Beautiful Daughters ........ and a Husband whom you will give time to so He also can be allowed to grieve the loss of the wife he had and learn to help the wife has cope with the changes that will effect your family.....