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Adrienne Dellwo

When Kids Have Fibromyalgia or Chronic Fatigue Syndrome

By November 30, 2012

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The stereotypical images of someone with fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) is usually either an old woman or a burned-out yuppie. That makes it easy for people to miss the fact that anyone, at any age, can get FMS or ME/CFS.

That includes children. When you know how debilitating these illnesses are, it breaks your heart to think about what childhood is like for those who have them.

When both of these conditions are under-researched, it's fairly obvious that the juvenile forms haven't gotten a lot of attention from the medical community. To help further understanding, you can now read:

If you have a child with these illnesses or you developed one of them as a child, I'd love to hear about your experience. Please leave a comment below!

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Comments
November 30, 2012 at 8:25 am
(1) Daisy says:

I’ve had ME/CFS and POTS for as long as I can remember.
But I was only recently diagnosed at age of 26.
It’s terrible for a child to know that you are different but don’t know what is wrong with you.

November 30, 2012 at 9:05 am
(2) dfwmom says:

I have a child with fibro who is age 13. She was diagnosed last year.

School HURTS, and it’s particularly bad in the mornings, because mornings are tough for those with fibro. She didn’t know why. She just knew it hurt, and cried and cried and cried, and finally we traced it to the sensory sensitivities, bright lights, noise, people bumping into you. The stress of having to negotiate with a roomful of “helpful professionals” to negotiate accomodations at our school was horrible. And, her doctor was horrible. After her pain spiked off the chart during biofeedback, the doctor said, “Well, now we know that the pain you’ve been complaining of for the past three years is real”. I can’t express the feeling of betrayal to learn that our doctor believed my daughter had been lying about her pain for three years. She also would not work effectively with the school on the required paperwork

Pain clinics treat pain, which is only one of the dozens of symptoms, and the meds they use cause the other symptoms to get worse, mood effects, nausea, dizziness, weight gain, and they don’t even control the pain. So, we use a natural route, diet, exercise, relaxation techniques, accupuncture, etc.

There aren’t good education options for kids who need control over their work schedule, frequent rest breaks, and a low sensory stimulating environment. There’s virtual school and home school.

Don’t be afraid to take control of your life. Only you and your child know what’s working and what’s not. Doctors and schools can be fired.

November 30, 2012 at 11:22 am
(3) Rachel says:

I have vivid memories of having Fibro as a child (finally diagnosed at age 28). The pain and tightness made me appear serious and quiet as a child, even though my personality leaned more to the silly, laughing side. At school, other kids seemed so energetic and fast to me, I was always amazed by them. I already knew other kids had better memories than me. I was always losing things or spacing out in class, missing instructions. I often took naps during free periods. I tended to run late to school, having an awful time waking up.

Moving during P.E. or just walking through the halls w/ my book bag felt difficult, like I was wading against a strong current of water, physically exhausted and stiff. At home, I would get very irritable with my family members. Part of my frustration was that the pain made me more sensitive to discomforts, but also more empathetic to discomforts I noticed in others, but others seemed so callous and ignorant of my discomforts, which struck me as very unfair. I chose friends who were nicer and who I could sincerely complain to about life. I was a good companion b/c I was silly, easily amused and kind.

I did do some sports, and loved the feeling of my muscles warming up, but I sorely ached for days after. When I got a cold or the flu, I felt like I was going to die and then had to make up all the work -stressful! Pain then increased. Menstruation and PMS made me feel like the walking dead. I tried different diets and sports, thinking I was doing something wrong or stupid to cause the pain. I was afraid of seeming lazy too.

November 30, 2012 at 11:23 am
(4) Rachel says:

cont…
In a way, the physical discomfort made me focus and work harder to organize myself and overcome the challenges. Thinking about class topics woke me up some, and the mental stimulation distracted me from the pain. Times when I was more “awake,” I worked hard to make my grades.

Nearly unconsciously, I cut back on the energy I spent socially so I could focus on achieving academically. If I got less than an A or B, I felt embarrassed and exposed –I physically felt awkward, but I didn’t want it to show in any way on the outside. HIDING my discomfort was a constant driving force. I already knew life was harder for me for some reason and didn’t want to feel more socially uncomfortable than the “shy” person I already seemed to be.

I fought hard. I look back now and I’m proud of how hard I pushed myself, even though the unfairness of my situation was cruel. I don’t have that kid resilience any more now to “push through” like I did then. In college, the higher demands pushed me down into the C range. It all wore me out and I have been floundering since.

November 30, 2012 at 8:20 pm
(5) Abot Bensussen says:

I remember wanting to quit high school, as the lights were too bright, and the bells too loud. The crowded and noisy halls frightened me. I told all this to my folks and fortunately, I was able to win a scholarship to a boarding school, small, quiet and in the country. I stayed there for two years and graduated.

Only looking back can I see how fibro affected my life and my choices. For a second husband, I chose a very kind man. This has worked well for almost 48 years……He knows how to take good care of me, care that I need in order to have some quality of life.

Thank you for posting this, it enables me to understand myself and my life a little better.

November 30, 2012 at 8:22 pm
(6) April says:

I sincerely believe I’ve had it since as long as I can remember. I always had trouble getting up in the morning and would have strange pains in all parts of the body that would come and go. I could never do things that ‘normal’ people do like sports or concentrate in school. It seems like I am sensitive to everything around me like noises, weather, and even emotions. I finally got diagnosed with it in my late twenties only after a roommate who was a genius suggested it. I never heard of it before then.

My mom always would seem to be tired and never really socialize or went outside. She never had friends or did any activities of any kind. She would mostly watch tv, read or do things relating to her hobbies of doll collecting or candles. I found out she had depression but she had eczema really bad too. I am starting to wonder if she had fibro too. I really take after her a lot. I found of my cousin and aunt have fibro too so there is a genetic tendency in my family for it.

My 8yr old son is showing signs of it too and has since about 2 yrs ago. He is constantly saying his legs hurt and his memory is really bad. I sure hope he doesn’t have it or develop it because I don’t want him to suffer the same miserable fate as me and have people think it’s all in his head like they do to me.

april

December 1, 2012 at 8:57 am
(7) judy says:

Rachel, I relate. had severe migaines as a little kid. Pushed on and received the Presidential Physical Fitnss award. My legs hurt badly. I set school records for track and field then played soccer and we were the champions of the SE US. Felt terrible but thoght everyone felt like me so tuffen up. Diagnosed in1988. My male Dr. had it to . He retired at 50. I am going to fnd out all I can about the study in Tuscaloosa pointng to herpes1. I never have had a cold sore but if ths is the answer my Dr. said he will write the scrips, I also had Lyme for 10 years 3rd test revealed it. Have CFS which is a Epstein Barr sign if one is positive for herpes 6. I am. Also Ehnlers Danlos and osteopinia. Un real right? Well wish me luck as I attempt to find the protical The scientist who found all of this also found the H1N1 virus. Said he can’t beleive I am still walking. My best to you!

December 2, 2012 at 5:55 am
(8) M says:

I came down with ME/CFS at 19 when my immune system fell apart after a bad round of mono coupled with pneumonia. After that i went back to training for my sport. My B-cells are all screwed up and my NK count is a disaster. I went from being a college athlete who loved my sport more than anything to a house bound cripple who has to watch his parents watch him deal with chemotherapy and the knowledge that baring a miracle of science, i wont recover, and will die before them. Thanks a ton modern science and fate, you guys really did me a solid.

December 5, 2012 at 12:16 pm
(9) holly says:

My daughter almost 13, was diagnosed at 10. After months of trying to figure out what was wrong, we finally found a good dr. But, that doesn’t help my daughter who remembers what it was like before the fibro. We keep looking for new ways to help her. It’s just not always. Easy.

dfwmom I would love to talk with you. Maybe our daughters could talk. My email address is thekidsplayroom@icloud.com

December 5, 2012 at 1:13 pm
(10) Meghan I says:

My symptoms started at age 9. And I just want to tell all of you that have posted about your children with fibro, and all you have done and fought for them, that your children are VERY lucky. If they are ever feeling down (which happens often with this disease), read them my experience as a fibro child for some perspective:
My mother died when I was 7. My father kind of checked out after that and my grandmothers would occasionally drop by and one that lived out of state would visit for weeks at a time and then leave. I suppose they thought they were helping “raise” me & my siblings. I was constantly criticized by my elders and abused by my older sister. No one stopped her. When I began to feel really awful in 4th grade, no one ever believed me. I did miss a lot of school that year. After 4th grade my family almost never let me stay home when I was sick. No matter what. The one exception being the time I had a fever of 104. No one took me to the doctor. Ever. If I ever tried to tell anyone about how bad I felt I received only eye-rolling or more criticizing as an answer. Not only did they not help me, they made my symptoms so much worse by stressing me out. I was made to feel inadequate because I didn’t keep the house clean at 9 years old. I was often late for school, and my father would yell at me in the car on the way there. We all know what high noise levels first thing in the morning feels like, right? Ouch.

December 5, 2012 at 1:15 pm
(11) Meghan I says:

…Con’t: I never had the energy or clear-headedness at the end of the school day to do my homework. School was a nightmare to me because it seemed as though all the reasons I was miserable was because of it (trying to wake up early, getting yelled at for grades or oversleeping, unable to concentrate when the brain fog was bad and made fun of by teachers and students).
I really am glad that there is more awareness of fibro and CFS now and I love seeing these parents that actually listened to their kids and paid attention and picked up that there might be something wrong. Your children are blessed to have a protector like you.
*whew* Thanks for letting me get that out, haha!
P.S., I’m much better now!

December 7, 2012 at 5:35 am
(12) Jane Howcroft says:

Hi, my daughter Bethany is now 20 and was diagnosed with CFS in 2006. She has not recovered and infact has recently gotten much worse. She has had no treatment beyond psychotherapy as she did have a bit of a mental breakdown over it all – we didn’t help because the school pressured us to get her into schol but in the end she had home tutors and attended a special school when well. Beth has developed serious depression and is on fluoxetine which does help. We are awaiting an appointment with a hospital in Liverpool which has a specialist physio clinic. She has the full gamete of symptoms, headaches, light sensitivity, leg spasms, poor sleep, no refreshing sleep, delayed fatigue, exhaustion, lack of appetite, irritabl bowl, anxiety, and on an on… we have to use a wheel chair if we want to go further than local shops. She struggles with cognitive issues and can’t concentrate. She is trying to get her GCSE math this year but the 3 hours of college on a Friday wipe her out till Tuesday. And we are having to fight to get ESA support and DLA has been rejected! She had a medical assessment for ESA and scored 0 and you need a score of 15 to be eligible! And the joke is they wont give her Job seekers because they sent her on work experience and after 3 days of 3 hours in a vets reception she collapsed and was bed ridden for 3 days…. From chioldhood to early adulthood no one seems to want to help.

December 14, 2012 at 4:33 pm
(13) Plum says:

I realise now that I had CFS all through my teen years. I just thought that I was lazy as I never had the energy to do what everyone else around me was doing. So I pushed myself. I never understood that even half a unit of alcohol was affecting me badly and that I shouldn’t have drunk anything ever. I just thought I was being weak and complaining too much.

I pushed myself to be ‘normal’. I spent every afternoon of my teen years asleep. I spent my 20′s trying to get through uni and then work while feeling exhausted all the time.

Finally my body gave up at the age of 29 and I have now been battling severe CFS for almost 3 years. I still don’t get the help and support I need and instead struggle through this on my own. I wish I had been told what was wrong with me when I was younger and that it was ok to be tired and to pace myself. Then I might not be in the situation I am in today.

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