Hi, Everyone I am new to the group here. My name is Laurie. I am 41 years old. I was recently dxed with fibro but I am certain I have had it for at least 10 years. Going on that information, I feel it's progressing as I had first experienced mild pain and weakness after a very serious bout of chronic fatigue that lasted for 3 months. I got a bad cold and then I couldn't get out of bed deom the extreme weakness and fatigue. I was only 31 years old. Since then I have had muscle weakness and pain all over my body and through several "flares" over these last years, brought on by emotional trauma, it seems to have gotten worse. Will it continue to get "worse" with each uncontrollable flare? I am taking amitryptiline which has worked wonders and so far is giving me a very good night's sleep and helps alot. I was tested for muscle disease after the last very bad "flare" and finally given the fibro diagnosis. I am scared. Do those of us who suffer w fibro eventually end up in a wheelchair due to the weakness. I think I can power through the pain on its own, it's the weakness that is most disturbing to me. After just a year and half since the last "flare", I cannot walk with resting often because my feet are very painful and it wipes me out for the rest of the day. Sorry to just be complaining when everyone here is also suffering. I just am hoping for positive words that it doesn't progress to a state that leaves me in a wheelchair unable to help myself.... I was told it isn't progressive in that it doesn't destroy tissue, but if it still will leave me unable to do for myself then for me it IS progressive. Thank you all for your kind support in advance.
welcome, i'm also pretty new to the group. I also came to the group for answers. as far as I can figure out is everyone fibro. is different. even tho we all go through the same things and all need to vent. I have been going through the discussions and finding out a lot of things I didn't know..and I know that I was searching for a place where I could talk openly and honestly and people to understand how I feel, and I think I found it in this group. so again welcome and I hope you find the answers you are looking for
Questions for the group: Is there a book recommended for fibromyalgia and diet connection? I am wondering if a change in diet will help with symptom management? I eat like an average person. Sometimes fast food, but mostly a decent diet.
Hi Laurie, If you search the web you can find foods you should or shouldn't have. I cant have coffee, sugar, glutin and diary. This are my must to stay away from but I also have hypothyroid.If you cant find anything let me know and Ill find for you. Hugs Robin
Don't worry, I think it's unlikely you'll end up in a wheelchair. I have felt like you, somedays this feels like the worst pain I've ever had, but then the fibro will give me a good day and I forget how bad it was. My advice is to rest when you need to, and complain when you need to, someone here will always listen. I can't walk far either, and I have to use a cane, (my bp drops when I'm standing so I get dizzy alot) but at least I'm still moving. I'm going to stat an excercise program (again), I think starting with stretching exercises is the way to go, it helps. It's also a good idea to check with your doc about any excercise program before you start. Good luck, Charlie :)
Hi Laurie, WELCOME !!!
I am so glad you have found and joined us !
There is so much we can do to manage our symptoms, and yes they say its not progressive, however some days you will feel a lot worse than others, you can’t let that get you down, a positive attitude goes so far.
First and most important find a dr. That will work with you, to find what combination of things help you the most.
Also… Diet, nutrition and supplements are very important, I spend my days researching supplements and diets for CFS and fibro, so much to tell you… Long story short, gluten free, candida diet and anti- inflammation diet have helped me a lot. It’s hard, but as I learn more everyday and see different dr’s I am discovering that nutrition is very important in controlling our symptoms… Ex … Sugar causes fatigue, so when I want that fudge sunday, I think about how I don’t want more fatigue.
Also … Learning our limits and managing our stress also helps keeps symptoms under control, what ever you can do to find stress relief… Message, baths, I call it me time… For me this has become apart of daily ritual.
Exercise … Yes I said the dreaded word… I also use to say … Ya right, ok, exercise will cause more pain… But when I started getting joint pain… Which I never had, I was desperate to not let this fibro get worse, so although it seemed to be progressing, it was really just rearing its ugly head more. So I started riding a recumbent bike, because I knew I would have to sit and have a seat to support my back, I started slow… 5 min 2x a day, now I am up to 7 min 3x a day, it’s not hard, it’s not much, but it doesn’t stress my muscles, & my joints ( knees) are better than when I started. They are not getting worse
I hope that has helped,
Living with fibro, & CFS is hard, having this site & knowing that others understand what you are going through … For me has been such a blessing, not to mention how much I have learned.
Hugs & blessings
dee