Hi Everyone, my names Georgia and I’m currently 16 and have been battling fibromyalgia since I was 8. I was wondering if anyone else out there has had a young experience? Or would even like to discuss their own. Lately it has been getting worse and all the doctors say is “you’ll grow out of it” no one in my life understands what I go through, that’s why I came here… To relate to people in the same boat
I'm so sorry you've had to deal with this at such a young age. How were you diagnosed? What symptoms did you have when you were 8?
When I was young I had pain in my bones and was told it was growing pains. I have no idea if it could have been an early sign of fibro. My daughter who is 6 complains of aches and pains, and has stomache aches almost every day. She's also got allergies. I just wonder if doctors would take her pain seriously, and I don't even know what to tell her because it seems so vague. So I'm curious about your experience.
What do your parents say?
I hope you can connect with some other young people with this.
Wishing you some relief, and a good doctor who takes you seriously!
My Rheumatologist is starting to ask these questions at each visit of all patients, did you have 'growing pains as a child, did your Mother have growing pains as a child?'. I believe they are looking for 'predisposition' to fibro or autoimmune, and hopefully diagnosis and treatment can begin earlier.
I am so sorry that you have had to deal with this in your young life. It is absolutely unfair! I hope that you are under the watchful eye of a good Rheumatologist, and remain so. I feel they are our best hope.
I am glad that you have joined us. We have nearly 50 sub-groups here under the Ben's Friends Fibromyalgia Umbrella. I have often suggested that someone start a group for young people. To go to groups, click on that subject at the top of page. Anyone can start a group, yes, I could start it, but I believe that only the young should be there.
Wishing you well,
I have suffered with chronic pain since childhood too.
We did not get to go to the doctor so I was never seen for it, but I can recall having a lot of pain and issues. To the extent that I convinced my less than giving parents to replace my mattress when I was 12 cause my back hurt so badly all the time.
I have always had joint pain, as far back as I can remember.
Stay active and fit. That is so important.
I get so discouraged by all the posts from people with families saying no one believes me. This condition is so debilitating and to have people just turning their backs to us is not helpful.
One of my more frustrating symptoms lately has to do with muscle fatigue. Specifically in my eye control. It is not noticeable by people talking to me but my vision blurs cause my eyes start to "wander" very slightly. like a lazy eye.
BTW, yes, my Mother and I both had 'growing pains', autoimmune is on her side of the family, it did not bother her until now that she is nearly 81, I was hoping it would totally bypass her, and pray it does no more than psoriasis to my grandkids.
I know what you are going through I was diagnosed with fibromyalgia when I was sixteen. I went through 3 doctors before i came to Vermont where I live now I got diagnosed with it. It was even worse when I was in high school the teachers thought I was lying that I could not write because my hands really hurt. So I had to use my computer. Finally after my dad had to argue with the teachers etc they finally understood that I needed help writing when I have tests and quizes and use my computer for assignment. When I first saw my rheumatologist I was on pills and off and on a new one it was frustrating to take so many pills to help me feel better. Then when you develop new symptoms you have to see a different doctor. Good luck if you want to talk I will be here.
I too am very sorry that you have Fibro at such a young age. I see ads on TV about juvenile fibro and my heart goes out to them that have it at a young age.
This group is very good at listening and I find that such a comfort. There is no judging here so you can be completely open and honest. I have not been here very long but that is what I have noticed.
Welcome to the best group ever!
A reply to all of you.
When I was eight the widespread body pain you are all familiar with began, unable to truly comprehend what was happening I explained it to my mother who could clearly tell something was wrong. We were passed around doctors for a few years as seems to occur with most young suffers, all they would say was "its growing pains" but growing pains for a few years soon were overruled. With winter approaching each year I began to miss more and more school until I was keep home all winter, missing a term and subsequently teaching myself for many primary years. I had been unable to walk most mornings waking up with swollen knees and ankles or extreme back pain. I feel as though my pain was much more extreme as a kid however, I think that is just because I was unable to comprehend what was occurring and I have built up a tolerance now.
As for my symptoms now, My back pain has gotten worse and my knees and hips are now severely affected as I have been told I have developed rheumatoid arthritis. Since hitting college I have begun experiencing numb hands and feet which become extremely challenging at school especially during exams. Obviously these are not the only things, irritable bowel like symptoms which have occurred since I was a kid and recently I have had issues with my eyes. Not with my sight but when symptoms get really bad my eyes swell up and the soft tissue expands around my eye causing additional pressure to my constant headaches. When this happens I also get blister like swelling on my actual eye ball. Does anyone else experience this?
In regards to my family my mother is extremely supportive however originally doubted what was occurring until she met a friend of hers who also suffers with Fibro and was able to give her an insight into our lives...
If you have any other questions I will happily respond.
Are they giving you a biologic to slow down the progression of the RA? If you look under the 'treatment' segment of this info, it will explain the biologics and their benefits to you!
My heart goes out to you Georgia! I have Psoriatic Arthritis, the spondylitis type, which mainly targets the spine. Neither one is a walk in the park, but a biologic can pinpoint down to the very cell where it is needed, it by passes all of the systems where side effects usually occur. I take Embrel.
Oh, you're in Australia, that makes it tough to get! Have they mentioned this to you yet? If you are not taking them yet, perhaps it's time to read up on them and talk to them about it!
My cervical MRI readings came back today and it explained my headaches, which I usually blame on sinus/allergies, but know the neck is a factor, I just never realized that the spine starts near the top of the head, Mine start at C-3 at the brain stem, so guess that is a factor in these skull cracking headaches!
I'm so glad you found our site Georgia. I post a lot of info on all types of arthritis, try to keep up on all of the latest treatments, tests, on our sub-group 'Fibromyalgia and Arthritis'. Just click on groups at the top of the page, it will take you to all of the different groups we have under the Ben's Friends Fibromyalgia umbrella. You are most welcome to join!
Sending you a great big hug,
Hi Georgia and welcome to our support group. We're all touched by fibro, unfortunately. I didn't get it in my youth, I don't think...although it is possible that something I had as a young adult was actually fibro.
At any rate, I wanted to tell you that you are very welcome here and we'll try our best to help you with your fibro issues. Just feel free to ask here for anything you need answered.
I'm not sure why your doctors are saying that you'll grow out of this. People don't grow out of fibro; it's a life-long illness. Unfortunately.
I agree with SK; it's completely unfair that young people are stricken with fibro. I know that doctors are now taking it seriously as an illness and serious research is being done on it. My rheumy feels that much better pain relief will be developed in less than five years.
Please take care of yourself and remember to pace yourself and your day. It helps immensely in dealing with fibro.
I am in Australia and find few medical folk who can really help, but I ring my local pharmacist whenever I hear of a medication that I think might help, and she will tell me if it is available here in Australia, and the dose and then I take that information to my GP.
Good Luck, I hope you find someone in Tassie to help. Barb
Georgia I have had it all my life but it wasn't diagnosed until I was 20. They said the severe "growing pains" and several other constant illnesses were related to fibro and it's internal effects. I got married and raised children while sick. Was hard, but everyone's life is hard in one way or another. Glad you found us, because we DO understand, and a HUGE percentage of people now look back and realize the problems they've had all their lives are fibro related. I've never heard of anyone growing out of it though.So sorry you are going through this so young. Yours was the beginnings of RA, mine was the beginnings of lupus. I think fibro is an auto-immune disease like RA and lupus and those first years are mistaken for fibro when it is related to something else.
Best wishes and soft hugs, Sheila
Being young and in pain sucks. I'm sorry you're having to go through this.
I complained of joint pain a lot as a kid too, but I thought everyone felt the same way so I didn't bring it up much. I couldn't run without excruciating pain, so of course gym coaches just loooved me.
My senior year of high school, I started having severe bladder pain. I went to the ER at least once every two weeks because I was sobbing. I had ER docs look me straight in the eye and tell me I wasn't feeling pain because I was too young to know what pain is. They told me it was my age/gender/in my head. A week before graduation I was diagnosed with Interstitial Cystitis, but other pains were cropping up. Fast forward to me at 23, and I couldn't work anymore (not that working was easy with IC). I finally saw a Rheumatologist, and after asking me questions and doing the dreaded poke test, he said I'd probably had Fibromyalgia since I was a child.
Finding a doctor who will listen to you is key when we're young. Some of them don't want to look past our age and see the real issues. Don't put up with doctors/nurses who belittle your pain and your experience just because you're young.
Now of course my doctors and I are trying to figure out why I have inflammation markers in my blood work. No one's said it yet, but of course I worry about RA.
I'm certainly glad that you found us. It sounds like you have no support. For your doctor to say, "Oh you'll grow out of it sounds to me like your doctor doesn't really understand Fibromyalgia at all. The chronic means you do not grow out of it. Because you have it for life it is so critically important to find a doctor who really listens to you and understands his role of working with you to find the combination of meds to keep your pain at a maintenance level so that you are able to function.
We do have a group for young people. At the top of the Main Page there is a tab for Groups. When you press it you will find all the different groups available.
Ask questions, take part in Discussions and get to know us and find some information that will help you.
Though I was not diagnosed until I was 44 yr old as I look back over my life I see the beginnings of my FM at age 8 with the stress of piano and theory exams plus the stress of other exams.
I am 22 now, and was diagnosed when I was 19 and symptomatic since I was 12 or 13 or so.
When I was younger the doctors were all very good at jumping to the diagnosis of "growing pains" that is basically the hospitals way of saying "you are young and cannot have anything different". Only when I had finished growing were the hospital interested in running more tests and finally they diagnosed fibro. I cried when they told me because they had given me a name I could research and told me it was not all inside my head.
You are more than welcome to message me at any point if you would like to talk further. I am always happy to talk.
Hi Georgia. You chose a great place to be. You are in good company. You will learn a lot here. I'm in my 50's and was just diagnosed 4 years ago. I chose not to learn about it. I just did what my doctors said. Recently I have become more curious and felt I needed to know. You are a wise young woman. Coming here will educate you a great deal.
Now that I am thinking about it more I can think of things in my childhood that would have been signs of fibro. I was sick and missed school a lot early on. No real reason, just didn't feel good. My pediatrician called it "the worries". Must have been stress related. Things happened throughout my whole life that were definite signals. Had many bouts of unexplained flu like seasons during adulthood that seemed to last forever. And they got worse and closer together. Lots of fatigue.
Welcome to this wonderful place. Everyone understands, Nobody judges. Check the discussions every day too. You will learn tons and won't feel alone.
Welcome Georgia and many gentle hugs to you.
Oh, my dear Georgia, what you have been through! I am older, but I think my daughter has signs of it. No, I don't think we grow out of it, we simply learn to manage the symptoms as they occur. I have noticed my daughter copying what I do for various symptoms, though she does not have a diagnosis.....yet.
I am glad you are here, and the challenges hit us at any age. It is harder when it hits at a young age. I may have had it as early as 8 years old, from things my mother noticed. There wasn't much recognition of fibro back then. I was always tired, and I spent spring break sleeping as if my life depended on it - even in third grade!
It is good that you are diagnosed, but if anyone tries to say you'll grow out of it, look elsewhere. Meanwhile, I hope you will join in with all of us, as we share the same path. We learn fro each other as we go along.
Just wanted you all to know that here is a group that I have created for young fibro sufferers xx
Hey Georgia, I DEFINITELY relate to what your going through. I am 21 now, was diagnosed with severe fibrmyalgia at 18, but my symptoms and pain started around the age of 7 to 8. I know what it is to be a young sufferer to this horrible disease. I would always hear the same, "you will grow out of it", or "maybe your growing" when my legs would hurt so badly I would start to cry.
I'm sorry you have gone through so much so young, I am here if you ever want to talk. I hate fibro so much but it amazes me there is someone else with such a similar story. I appreciate each and every one of you!
Hey Georgia (:
I’m 19 and was just recently diagnosed but I’ve been suffering with it for as long as I can remember. I almost feel like its harder for us to deal with being so young because its kind of like people don’t believe we can be so sick and so young! But trust me I know exactly what you’re going through and it’s nice to have someone to relate to!