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Fibromyalgia in Children
15 Replies
Leeann G - August 10

Is there any research information about Fibro in children?

 

Sasha - June 2

From what I gather, FM doesn't usually become apparent until well into adult-hood, so therefore children are too young to have symptoms. But I may be wrong.

 

Leah - June 11

I got fibro when I was 16, and was told by my doctor that it is very rare to get it at that age and younger. He also said not much research was done into why younger people get fibro. I know from experience that it is as hard on the parents as it is on the child. You have to stand by and let your child learn their boundaries of what they can and can't do, i'm now almost 23 and still sometimes go over my boundaries. I think the most important thing is to listen and talk to them about what is going on and understand that they may not be able to do all the things that they want straight away and therefore can become very frustrated with both the parents and themselves

 

robbie - August 10

idk if there is ant research info but my girlfriend has had it since she was a little girl and i cry everytime i think about it. all i know is that there needs to be an increase in research so some day in her life time there can be a cure.

 

rachelr - October 3

My internalist's wife was bedridden with fms so he has firsthand knowledge and treats many patients. My 5 year old is presenting some problems with pain so I asked him about it and he said that 50% of children whose parents have fms may develop it also. One of his own children is also developing. He says that at a young age, only good nutrition, (mediterranean diet) no processed sugars, no chocolate, caffeine, etc. You get the picture. Other than that, lots of worrying we do about our children.

 

BrandyO - February 9

Sasha .... I started symptoms of fibro at age 12. I am now almost 53. My youngest daughter started having the same symptoms at a 12 that I did. We went from doctor to doctor, test after test and now at age 17 she was just dx with fibro. YES children can have fibro, some starting even younger than 12.

 

colleen steele - February 10

Hi Leeann, I don't know of any children who have fibro.But in retrospect I had a bad head head injury when I was 14.When I think back now I think I have had it since then.I am 51 now and my syptoms started way back then and steadly got worse and worse.All those years I knew something was wrong and that is a terrible feeling having dr's tell you nothing is wrong.I finally found a good dr.that diagnosed me last year. As for reasearch I don't know of any but it should be reasearched more,for all of us.I can imagine it is really bad for kids because they don't understand,they only feel the pain and stuff.They have to deal with without knowing why they hurt,or tired.etc. All we can do really is try to explain to them,make them feel safe,and love them with all our hearts.........Good Luck and good health.......Colleen

 

docholiday - July 23

I started realizing the symptoms of fibro at age 12. Now that I know so much more about it and I look back I see smaller symptoms occurring much before that. The fibro made my school experience an absolute nightmare. I had no idea what my problem was, i began thinking I was just plain lazy. I gained weight, I ended up weighing 180lbs at 5'3". I couldn't play sports that I so desperatley wanted to. I tried, but only found that I couldn't even give it as much as I wanted too. I found schoolwork so hard, organization is hard for me, so you can see how that can affect schoolwork. I can't and couldn't then remember things. I was sick all the time and I always thought that I was just making myself sick, because I didn't want to participate in something. I realize now that it was just the stress or the excitement of the situation that made me feel that way. I missed a lot of school my freshman year because I was always sick, my menstrual cycle really put me down, making it even worse. It was the transition from the comfort of grammar school to the new situation of people and a place that I didn't know. I couldn't talk to new people because I couldn't and still can't make a conversation. People liked me and I would have had no problem with making friends, but it was so hard for me to be in the real word, outside my fogginess and forgetfulness. It was easier to stay to myself. Sophomore year I finally gave up on sports, when I realized that my shoulder had tightened up just too much to throw a softball. I did find that I could participate in cheerleading, I guess that movement just didn't bother me. I would love for anyone that is young and has this to find out that they do and learn all about it. I would have had a much easier time if I had known what I was dealing with. I look now at my own 2 girls and hope that they do not get it, as I and my sister have gotten it from my mom, she from my grandma and her from her mom. We are suspicious of my aunt having it as well (moms sister). I will be looking for symptoms from them and now that I know about it, I will be able to make their life much easier.

 

worriedmom - July 31

Actually my daughter is 14, and was diagnosed 6 months ago with Fibro. The RA specialist said that it is more common now in teenage girls. There is more stress on athletic girls, and beginning high school, less time for 8 hours of sleep. etc. I am here to gain as much knowledge as I can to help her.

 

Robin1237 - September 23

This is so sad reading all this. I know what we have -- it's Lyme disease, a bacterial infection generally acquired from being bitten by an infected tick, but can also come from other insect bites, and...can be passed transplacentally, meaning kids are being born with it if their parents have it. Please go read on www.lymenet.org/FlashDiscussion/MedicalQuestions -- there are parents there, kids there, families there, support group links for everyone. It's a huge worldwide issue now and everyone is beginning to wake up to what's going on. People can get tested for Lyme(plus a few other coinfections) and people are trying all kinds of treatments. You need to work with a Lyme-treating doctor. The folks at lymenet can help you find one.

 

Marita - October 8

I think in children fibromyalgia can often be misdiagnosed as 'growing pains', as that is the obvious answer when a growing child is talking about these pains etc. I had terrible 'growing pains' as a child... and still have the exact same pains now. I haven't grown any for 10+ years, though. I have found out about fibromyalgia fairly recently and after talking to a lot of people dealing with it first hand, I have been told they believe I have it, and should get diagnosed. I seem to have all the symptoms. If I have it, I am sure I am not the only one 'misdiagnosed' and had the doctors telling my mother for years it was "...only growing pains, not to worry".

 

SarahO. - December 4

Robin, not EVERYONE has Lyme disease- but I agree that many people here may have it or another TBD. Children are especially likely to GET Lyme disease- they are high risk!!!
If anyone got firbomyalgia young, I would get checked out for a TBD!!

California has high rates of lyme % in ticks and the doctor sdon't know- they think it is an EastCoast disease- so people in CA are more likely to be misdiagnosed.

Lyme can be blood negative. Anyone with fibromyalgia should be tested for
BABESIOSIS
EHRLICHIOSIS- both HGE & HME
and Lyme disease by Western Blot test ASK FOR THE BANDS

Lymenet.org has a Flash discussion board like Robin said. I would urge anyone to go on there and ask questions.

IF oyu have Lyme you could get PAIN FREE, like me and Robin. For me, fibromyalgia was AGONIZING. It was EXCRUCIATING. And I am 17 years wihtout a drink or drug adn refused ANY kind of pain pill. SO it hurt. A lot. Always.

And now I am pain FREE!!!
For SEVEN YEARS NOW!!!

PLEASE, anyone who HIKES, who GARDENS, who has a COMPANION ANIMAL, please go to Lymenet.org and find a Lyme doc and get evalauted- you may be able to get OUT OF PAIN!!
Like Robin- like me-

Sincerely,
Sarah O.
1-831-662-2895

 

SarahO. - December 4

A life in the dark
Laura Spencer’s debilitating fight with Lyme disease

By Scott A. Clark, Chester County Press


Eight years ago at age nine Laura Spencer was the Delaware State Gymnastics Champion. She was as happy and healthy as any other girl her age. Now, at age 17, Laura spends most of her waking hours lying in a darkened bedroom, the
blinds drawn against the painful light of day. The pain in her body is so great
she there are days when she cannot even get out of bed.


“I can’t explain to you her suffering,” says Laura’s mother Janet
Spencer.


“My whole body feels like I have been thrown off of a cliff,” adds
Laura. “There have been days when I felt like I was going to die, and I
wanted to.”


The disease that has robbed Laura of her youth and has caused her such
suffering is Lyme disease and, while her case is extreme, it is symbolic of the
experiences of thousands of other Lyme disease sufferers throughout the
country.


Laura first contracted Lyme disease when she was three years old. Her doctor
prescribed a week of penicillin treatments and the symptoms disappeared. When
Laura was eight years old the symptoms began to reappear: headaches, stomach
problems, aches in her feet, etc. Doctors now believe that these symptoms
resulted from a recurrence of her earlier bout with the disease combined with a
new infection.


After Laura’s symptoms resurfaced, she and her parents began a long and
frustrating journey in search of a diagnosis. In the end the Spencers would
visit over 30 physicians and spend over $50,000 before Laura was finally
diagnosed as having Lyme disease. During this time Laura also underwent eight
sinus surgeries because of persistent sinus infections brought on by the
disease. She was also accused of faking her symptoms as a way of getting
attention. One doctor even told Janet that Laura was simply “jealous of her
younger sister.”


The misdiagnosis continued when, at age 13, Laura was diagnosed as having
fibromyalgia, a disease that causes chronic muscle pain and fatigue. She went
through two years of painful physical therapy before being taken to Dr.
Charlene DeMarco, a Lyme specialist near Cape May [actually Egg Harbor, Ed.],
New Jersey. Through a PCR test, Dr. DeMarco was able to diagnose Laura as
having Lyme disease. The PCR test detects the DNA of the Lyme spirochete in
blood and urine and is one of the only definitive tests for the disease.


According to Janet, Dr. DeMarco started Laura on high-dose oral antibiotics,
which had some effect, but were too hard on Laura’s stomach. Dr. DeMarco was
planning to start Laura on intravenous antibiotics, but an investigation of her
practice by insurance companies prevented her from doing so. Janet believes
that the insurance companies are partly to blame for the lack of proper Lyme
disease care by physicians.


For the past two years Laura has been on and off intravenous antibiotics,
the longest stretch being four months during which time she showed marked
improvement. However, when the antibiotic treatment stopped she quickly
regressed. Laura recently started a six-month intravenous antibiotic program
that she and her parents hope will knock the disease out once and for all.
Janet has been in contact with a mother in Connecticut whose daughter suffered
from an even more severe form of Lyme disease than Laura has. After undergoing
long-term intravenous antibiotics, she has been able to live a full and normal
life.


Laura and her parents lay much of the blame for her suffering on the medical
community and the lack of current research into Lyme disease.


“The medical community is about 10 years behind in Lyme research,” says
Janet.


To correct this deficit in research, several Lyme disease organizations are
planning to bombard the White House on Valentine’s Day with valentines that
encourage increased funding for Lyme disease research.


For all of the pain and suffering she has been through, Laura maintains a
positive outlook on her future.


“In all of this I do have peace,” she says. “I am not going through
this for nothing. I believe that the Lord does have a plan for me.”


Still, Laura does miss the life that she has been robbed of. She can no
longer sing because of the pain in her jaw. She cannot hang out at the mall
like a normal teen-ager. She cannot do something as simple as sit outside in
the sunlight and enjoy the fresh air. On a good day, Janet says, Laura will sit
in the living room and watch television with her parents for an hour or two.


“This is someone who was doing back handsprings on a balance beam when she
was nine,” says Janet.


All the Spencers can do now is hope and pray that the six-month intravenous
antibiotic treatment works. Until then, Janet will continue to work to educate
people about the dangers of Lyme disease.


“If anyone doesn’t believe that Lyme disease can ruin your life, I say
‘come and meet Laura,’” says Janet.


Meanwhile, Laura will continue to face the future with optimism and dream of
the day when she can get out of bed, put on her favorite outfit and run as far
and as fast as she can like the bounding, bouncing gymnast she once was.


Chester County Press
http://www.chestercounty.com/press/article07.htm


 

britt4156 - March 5

Hi. I'm 15 and have fibro. I was diagnosed at the age of 13. As you may know it can be very hard to cope with this disease. So it has been hard for me to find teenagers with the same issue as me. I was wandering if you could let me talk to your daughter about this. I need to talk to someone who understands my pain.

 

bluesbrrd - April 7

I can think of nothing more sad than to have a child diagnosed with this disease, which we all know is difficult enough when you are an adult! I never wanted to have children, and now that I know fibromyalgia is hereditary I am glad that I didn't. It would have been too hard to deal with the guilt I would have felt about it! But what's weird is no one else in my family has it - and I have 3 sisters and a brother. No mom, grandparents, aunts, I am the only one in my family!

I got it fairly young, at age 31, after the extreme emotional stress of a difficult divorce. In October I went surfing (for the last time!), got a sinus infection that wouldn't go away, which then developed into strep throat, and a month later I still felt like I was much more tired than a young woman should be. I went out dancing with friends on New Year's Eve, and the next day I could not stand up. I had swollen bruised looking lumps along my lower legs and ankles, and I couldn't put any weight on them at all, so I was suddenly bedridden. Whatever this was traveled into my knee and my hip, and I had to be carried out of my apartment to the rheumatologist. I had something called erethyma nodosum, and had to stay in bed for months. Then I got painful muscle spasms throughout my body, and I could barely use my hands and arms. I had every test in the book, and finally my doctor told me I had fibrositis, and put me in the hospital for 2 weeks. This was in 1987, so they didn't call it fibromyalgia yet.

I had to quit my job, move out of my apartment at the beach, and put everything I owned into storage. Just over a years after getting dicorced, i had to move back home with my mother and 16-year-old brother!

I hadn't lived at home for ten years. I had been married, and begun a successful career. It was just about the most horrible thing anyone could imagine happening to them! For a year I was too sick to do almost anything. By the second year, i was able to work four hours a day. With the help of a TENS unit, and a new antidepressant, after 2 years I was finally able to work full time again and leave home. I believe that I was able to recover because I was still young enough, thank goodness. Also, the prospect at having to live at home with my mother the rest of my life as some kind of invalid was VERY motivating to me. Within another year, i moved 500 miles away to Washington, DC so I could rebuild my career and my life.

I was able to work for ten years, although it was very difficult at times. I did not tell anyone about my disability. I had to be very careful, and did not have a lot of energy to do things outside of work. I was still able to date, and enjoy life, and exercise (gently). My mind was very focused and my pain level was low. So you can go into remission for quite a while, which is what my doctor told me.

After ten years, unfortunately, I developed other serious problems from endometriosis, which resulted in four surgeries and chronic pelvic pain, and I got very sick again and finally had to quit my job. but working those ten years was the best time of my life, and because of it I had the satisfaction of knowing I had done something to contribute to society, and thank goodness now have disability covergae and a retirement fund.

So don't ever let anyone tell you you can't be successful and have a life even if you have fibromyalgia. I now realize the endometriosis started in high school, because I had terrible pain with my periods. It weakened my body over time, and I believe it was the cause of my fibromyalgia. Recent research has shown that 30% of women with endometriosis (which is fairly common and also a cause of infertility) will get fibromyalgia! It put stress on my immune system, which as we know, many people with immune disorders like lupus and RA also get fibromyalgia. Lyme also activates the immune system. I think it's why the symptoms are so similar - different causes, but same effects.

I am thankful every day that I don't have lupus, RA, or MS. Fibromyalgia is tough, but otherwise my body is pretty healthy. It's taken me years to get over the second illness and surgeries, but my pelvic pain is finally gone now too. You just have to believe that you can get beyond whatever hell it is you have to go through! I've really had a great life, and I never gave up no matter what happened to me. I wish I could still work, because I loved my job, but I have to make new goals for myself.

I have recently decided that I want to seriously pursue making jewelry, which is a hobby I have had for many years. It just occurred to me one day, that it would really make me happy if I could make all of my ideas into something beautiful, that I could share with the world. I am excited and I feel more motivated than I have in a long time. I have had great fun buying a bunch of beautiful beads and imagining what I could do with them. Am I starting a business? I don't really know! It's more like I am thinking "build it, and they will come!"

You have to have dreams in life!

 

tpasco - May 20

I was diagnosed with cfs when I was 17. I was very active in cheer and all other school sports. I'm now 38, but there wasn't a clear diagnosis for fms 21 years ago so doctors weren't surewhat to call it. Now, I have a daughter of my own and I was shocked when she received the fms diagnosis at 14. It never occurred tome that she could have it too. Even though my mom and I both have it. I thought she was just whiny. I felt so guilty for not seeing the signs.

 

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