Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
My name is Liliana but you can call me Lily, I am 18 years old and I was diagnosed with Fibromyalgia at the tender age of 16. It was hard, well it is hard to deal with this; I'm the only one in my family that has Fibro which means no one understands. Over the years I have got almost every symptom of Fibro, you name it I probably got it.
I've joined this support group because I am on a breaking point and I need help, I need people that understand. I went to the hospital on Sunday because I stated vomiting and that's unlike me so of course I went. And for the two hours I was there my heart rate went as low as 25 bpm and as high as 157 bpm (beats per minute) and my oxygen went as low as 73; do you want to know what the doctor told me, he just brushed it off as a symptom of Fibro. Does anyone else feel like as soon as doctors know you have Fibro they just give up on you, they just think everything you came in for is just another symptom. I go to the doctors for help not to feel helpless.
I don't know what to do anymore, any suggestions ...
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88FIn 1969 we decided to get married without a big wedding. Most of our friends and family liked large over the top for the time kind of weddings and I did not. First, I didn't see why spending so much money for one day when we have the rest of our lives to live. I have never regretted not having a big formal wedding. Another issue is not liking all the attention. Also, we have gone to big...
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We're all troubled.WSo, to remind ourselves we're not at rock bottom (this is a reverse optimism thing I learned as a kid):We are not living on the island of Krakatoa when the volcano goes boom!Yeah, okay, that sucks.***Toay in 1942, Pierre Laval announced that the way to free France was for Germany to win WW2. Pierre did not win a lot of friends. When the war ended, quite quickly he was tried...
Fibromyalgia has it's own diagnostic code and is a complex illness. However, not every single symptom can be blamed on it. Please see a cardiologist for an evaluation.
I'd like to suggest that you purchase the book "Fibromyalgia for Dummies." You can find it on Amazon. It will give you a comprehensive overview of this beast and a lot of ways to handle it. It is also a good educational tool for family members and friends.
I've been dealing with Fibromyalgia for about 8 years. I'm the only one in my family that has it too. You have to be your own best advocate. A doctor is your employee. Most of us have fired at least one doctor. I know it is difficult to challenge a doctor in the middle of a crisis. Standing up for yourself leads to better care. If you don't like an attitude in ER and don't feel comfortable confronting the doctor, ask for/insist on seeing a patient advocate. They are supposed to be neutral and can facilitate a better dialogue/hospital experience.
There are great, compassionate doctors out there. Try to find the doctors who listen and will work with you in a collaborative manner. It takes time, but most of us have pretty good medical support. Educate yourself so you can differentiate between a doctor that is knowledgeable about Fibromyalgia and one that is outdated, thinks that you are a hypochondriac, suggests inappropriate regimens such as aerobics or thinks that Fibromyalgia doesn't exist.
We have an active group here. Leo our lovely, brainy spokesmodel hosts daily check in. Look for the puma avatar and a heading that includes the day of the week. Join us or lurk - whatever floats your boat. We get it, we're here and will try to help. Nighty nite!
Yes, it is sad that some ER docs and regular physicians brush you off or your symptoms as, "Oh it's just fibro." once you've been labeled with this illness. But don't give up the fight. If one doctor treats you like junk, get a new one.
Hugs and much support!
Fibro is neuromuscular, and docs often don't remember or admit that. When your body tells you it is not your fibro? Or "jsut" fibro? Take FIbro for Dummies with you to the ER and docs, and show them the book. I've actualy done that a couple of times. I won no friends, but I made my point. Gee, it turned out once I had pneumonia! Love to know how *that* was "just fibro" *eyeroll*
Anyway, welcome to our group, and feel free to lurk, join in, whatever you prefer. We're a pretty open group, and we'll discuss darn near anything. (And do.)
Fantod
Thank you for welcoming me to the group! I'm really happy I found you guys :) I didn't purchase the book you suggest at least not yet. To be honest I'm kinda new at this Fibro thing, I have researched it and so forth but when I comes to going to the ER since I'm in pain I feel like a baby, like I need someone to be my advocate you know. But I should probably stop that, I need to remember that I'm a big girl now I'm 18 and I need to speak up especially because of the Fibro. Although I think I really feel like a baby when I go to the ER because my mom usually comes with me and that's not really a bad thing I'm glad she's there but when she's not there I feel weird and alone.
BlueSky
Thanks for the love and support I am always here for you too. In all honestly my trip to the ER made me think that maybe I shouldn't say anything about my Fibro that way they can treat me like any another patient. I mean, I even when I went to the hospital urgent care they brought in some lady that worked there that apparently had Fibro too and told me to do aerobics. Let’s just say if it weren't against the law to hurt someone and if I weren't a good person instead of smiling and nodding my head I would have hurt someone. I feel like some doctors just use are Fibro as a cheat sheet you know. Like "Oh you can a headache" BOOM! It's your Fibro. Like all the sudden we became like less of a patient to them or something. Very frustrating.
Leo
I've read you check-ins and they are very interesting. I love how involved with the group you are! Once again I am sorry it took my so long to reply between college, family, friends, Fibro and well Netflix I barley have time to do anything but I am going to try hard to chat with you all. I would love to get to know all of you more. Like I said I haven't purchased the Fibro book yet but I am going to you can't be to educated right. I am going to speak up more for myself though, like I told Fantod I feel like a baby sometimes because I'm in so much pain and since my mom usually always comes with me I get to just be her baby in pain and she yells and argues for me. I suppose I need to put on my big girl pants when I go by myself and be the baby and the advocate.
Sending Loving huggies to all... xo
Love, Lily