Children who have CFIDS/FM

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Dec 27, 2008.

  1. TeaBisqit

    TeaBisqit Member

    I was on Youtube and came across this fourteen year old girl's blog vid about how she's mostly housebound with CFIDS/FM. And she's just such a baby yet. It fills me with such sadness to see the young ones with it. We never hear much about the young ones. It's usually just adults who come to the boards most of the time. She did another vid about having a bad experience with a mean doctor, too. It's such a horrible travesty of justice. These rotten doctors, they KNOW after all these years that the disease is REAL. How dare they treat the young ones badly. When will we get some kind of justice? Does this young girl have to have her life destroyed, too?
  2. findmind

    findmind New Member

    Yes, it is very sad. Have you seen the articles about CFS/ME in children in the Library here?

    My grdau got mono then "chronic mono" when she was about 14. She missed three years of high school. She is 21 now and still very very sick.

    This pandemic is a travesty; our gov't and many others know it. The only problem is, they are hiding something, and so will not pour money into research for it.

    Never fear, tho'....other, more compassionate researchers are on the trail, and I feel so hopeful that our children (of the world) will not have to suffer their whole lives with this dd.

    Pray for them all, for us all...

  3. TeaBisqit

    TeaBisqit Member

    They can't hide it forever. (As I sit here with yet another showing of those horrible Cymbalta commercials). All I can say is, when I got sick in 91, my doctor, who had been my doc all my life since I was a baby, told me that there was an outbreak of CFS on Long Island, NY where I grew up and got sick. When I walked into his office, he knew right away what it was and I had an immediate diagnosis of CFS. He said he had been seeing alot of it in recent weeks and there was an outbreak of it. So, unlike most people of today, I got diagnosed immediately. My mother called Social Security at the time, and she was told they were setting up a special section there just to deal with CFS. That is what she was told in 91. And she called the CDC and they told her that CFS was far worse and more disabling that AIDS and Cancer combined. I was given SS for CFIDS. It still took five months of waiting for them to process me, but I got it right away. After that, the outbreak was one hundred percent covered up on Long Island. We never heard of it again. No press was ever involved as far as I know, beyond calling it Yuppie Flu and making fun of it. And the end kicker was that my rotten uncle, the hematologist doctor, called my doc and after a forty-five minute conversation, my doc didn't want me as a patient anymore. And started saying CFS was a mental illness. He did a complete one eighty on me and I couldn't go to him again. My uncle still denies he ever said anything bad to him. This is complete BS. There is no way that my doc, who I'd been seeing since I was a baby would do this without God only knows what being said. My uncle is definitely part of the coverup. And to this day he still insists that our illness is mental. My uncle has medical military connections. There is one hundred percent something going on. But I can't make him talk. And now we don't talk at all since he has destroyed my relationships with my doctor and my other family members. When my mother passed away, my uncle asked if my current doctor could send him a copy of my bloodwork. I should have known better, but I said okay. After I let her send it, I guess he must have called her because she pulled the same crap on me. She asked me if my illness could just be panic attacks. Now this is after my having gone to her for a few years and she fully believed me before hand. I am convinced he called her and did damage. It's beyond evil. I can tell you, he will never know what other doctors I see in the future as I'm getting new insurance this month, I have to switch anyway.

    A few years back, around 2003 or 4, I got a call here in PA from a local lawyer's office. They were representing about half a dozen students from the local high school who all had come down with an outbreak of CFS. I was listed as a local contact for the disease at the time. They wanted info to help them fight the high school so the students could get the time off and whatever they needed. This outbreak was also completely covered up. The press never got wind of it. I gave the lawyer the info, but I never heard what happened on it.

    The truth has to come out sometime. They can't hide this forever. It's pandemic. And people are still getting sick. It's not like it came and went. I have alot of questions, like why aren't more of these CDC doctors afraid that their families will get it? Why aren't Senators and Representatives afraid their families will get it? They should be, shouldn't they?
  4. findmind

    findmind New Member

    Yes, you would think our Senators and Reps would be afraid...but they are contending with so much now, they don't (again) have time for us.

    Sen. Harry Reid is a valuable supporter for us, and has been instrumental in getting more funds for research; but those funds have been criminally misused.

    Have you read "Osler's Web"? All with CFIDS/ME spells out in detail the government's liability in creating this disease and gives references that can be checked out by anyone.

    Dr. Garth Nicolson also wrote a book about mycoplasma experiments on soldiers and people in prisons. He is a most famous researcher, and he was burned out of his Houston office, then his Austin office. He now has a site ( about mycoplasma and many other things that we should be tested for, but are not. He has protocols for treating it on his site. He will work with our drs to treat these bacterial and viral infections.

    I personally believe this disease is "contagious" in the sense that when a person first becomes sick, they can pass it on to close others; why else would family members come down with it? Why else would we have outbreaks?

    The National CFIDS Foundation ( has also found a toxin in 95% of patients blood, thru a very highly regarded Dr. Hokama, in Hawaii. He recently retired, but started a foundation so his findings could be continued.

    Surely some answers will come forward soon; there are so many researchers looking for answers now, I believe it is only a matter of time.

    Children may be our path to finding reasons because of their innocence and it being very hard to blame them for being sick. Let's hope their experiences will help generate more and more research that will find some answers and stop the IAIYH naysayers soon.

    Thanks for the discussion...

  5. deserella

    deserella Member

    I got CFS when I was 15. My doctor says if you are young when you get it your chances of recovery are a lot higher, so that gives me hope :)
  6. Nae14

    Nae14 New Member

    I'm 16 right now and got diagnosed with Fibromyalgia when I was 14. Along with polymyalgia and Osgood-Schlatter disease. After school everyday, I come straight home and collapse on my bed because I have a terrible time trying to go to sleep each night. I also have to come to school late sometimes and miss alot of school. But I refuse to let myself become homebound even though everyone says that'd "be best". I see that as giving up (in MY situation anyway). I'm in my last year of required gym, thank god, but it's hard to get excused when I don't "look or seem sick". (even though I have a note from my doctor)

    But most of all, having Fibromyalgia interferes with my social life. I'm a lil popular at school (if I do say so myself!) but nobody understands why I cant go to parties, games, the movies, sleepovers, or anything. That also means no dating because I never feel like going anywhere and I HATE being bothered when I'm sick. Honestly, I dont think anyone would even want to date me if they were aware of all luggage I carry with having FM. My biggest struggle is being lonely. I mostly just watch movies alone in my room all day. So, I get depressed at times and have really high anxiety. I'd really like to see a therapist or something.

    I don't really like explaining it to people, because I know that ALOT of people with FM are worse off then me. And as I start talking about the pain, I feel like I'm complaining. Or I tink that the person I'm talking to doesn't understand or think I'm lying.

    I also have to deal with my family telling me that I should "exercise more", "stop complaining and do something", or just "keep moving" and "stop laying around". Or friends making jokes that I'm "always sick" and "need to hurry up and get better". And my aunt saying that her 12 yr old daughter "has it too". Her tomboy of a daughter that plays bastetball, soccer, runs around, rides her bike, and shows absolutly no other symptoms besides her legs hurting a little. (maybe they hurt because she's extremely active???)

    Although websites like these are fantastic in all,
    I can't really relate because most of the people are grown adults and aren't dealing with some of the same stuff that I'm dealing with right now.

    As if being a 16yr old girl is hard enough...

    Can u post a link to the youtube video?[This Message was Edited on 12/28/2008]
  7. TeaBisqit

    TeaBisqit Member

    Nae, I understand you. I had it kind of like you do now back when I was sixteen. I had to go to school part time because I wasn't well enough to go everyday. With me, it went into an almost quasi remission for a few years, but I still had to go to college part time only. Then I got full blown CFIDS. But I definitely know where you're at. I couldn't do much in terms of a social life either.
  8. karynwolfe

    karynwolfe New Member

    It's really painful to watch others who are young, and should have had a chance for a cure by now, be treated like it's all in their heads. I fell ill within two weeks at the beginning of highschool (end of August, early September) in 2002. I always wonder whether or not there were more children who got sick at that time, in that school, because I HIGHLY doubt I was the only one. I had every classic sign you can get for infectious CFIDS/ME. I got diagnosed within 3 months by a doctor who was knowledge enough to know exactly what I had within about fifteen minutes, but also tried the whole "get exercise, eat right, you'll get better" routine and dismissed me without even letting me ask questions. "There is no cure..."

    What you said about your uncle is just.. scary. They DO know something. The only reason the CDC has their loose criteria is so they can include everyone together, lessening the chances that people will be taken seriously, broadening the amount of people who will be included in the diagnosis, and making it harder to do specific research, "stalling" the time that will pass before the truth is uncovered. They've done everything possible to do wrong to minimalize CFIDS/ME, and they did that on purpose because of the outbreaks, I know it. The truth -will- come out, and it's downright demonic of them that they'd let so many lives be ruined in the process.
  9. dani78xo

    dani78xo New Member

    I first got sick when I was 15, missed the rest of my sophomore year of high school, a third of junior year (I was out sick a lot), and 3/4 of senior year (I relapsed three times).

    When we were first looking for rheumatologists, one doctor told me I didn't need a rheumatologist, I needed a psychiatrist because FM didn't exist and it was all psychosomatic.

    Plus, there were a LOT of arrogant teachers at my high school who felt the need to inform me that my being out all the time was unfair to the other students, and I should just not be in school at all if I couldn't be there (though we'd tried tutoring when I couldn't be in school sophomore year, but I was too exhausted to get much work done, and the tutor they set me up with didn't know anything about the subjects I needed help in).

    Luckily there are doctors out there who want to help. I just started seeing a new rheumatologist who was actually one of the doctors who ran the lyrica trials. He seems very knowledgable, and the first time I saw him, he looked at me and said "You're too young to be here." It's nice when that's recognized; it's not easy being sick when you're still a teenager.
  10. dani78xo

    dani78xo New Member

    I definitely get where you're coming from. I pretty much avoided getting close to anyone after I got sick my sophomore year because I didn't want them to see how much being sick affected me, or that I was sick at all. I get the depression, too, because I am lonely a lot of the time. I used to go out all the time, but since I got sick a lot of nights I just have to stay home because I don't feel well enough to go anywhere. It's resulted in some pretty bad mood swings where I just get angry for being sick, and kindof shut everyone out for a while.

    I just started college in september, and I got really close to one of my housemates, eventually explaining to her that I was sick. It was difficult, nervewracking, and a little irritating, because though she knows I'm sick now she doesn't really understand (I got several "why do you sleep all the time?" comments from her before it struck a nerve). I don't think anyone can, until they've felt what we feel.

    People don't see it, can't understand, but the truth is this: I'll never be able to rockclimb like I did when I was younger. I can't ever play soccer again, or go running for more than a few minutes because it makes me sick. I can't walk too far or my knees start hurting real bad. I can't exercise as much as I'd like because it causes too much pain. The reason I'm hooked on coffee is because without it, I'm too exhausted to function, since I never get enough sleep. I'll never be able to go skiing or snowboarding, on long hikes, or any of that. I'm an outdoorsy person. It hurts that I can't do any of these things, and probably won't ever be able to. Healthy people take for granted things they can do with ease, that we couldn't do if we wanted to.

    There'll always be critics. There's always going to be someone writing you off as lazy or weird or whatever, but that's just people. I've gotten the same thing since I got sick, but I mostly try to ignore it now. If you can go out with friends one night, great, if you can't, it's still okay, but either way, you're doing what's best for you, not what anyone else says is best. If I'd listened to everyone who gave me a hard time, I'd never have finished high school. It was nice proving all of them wrong :].

    No, most people won't ever be able to understand what it's like to be sick when you're so young, but I think it makes us stronger. More determined to get where we need to go.

    By the way, if you have a facebook, there's a group on there for teens with FM. It's nice to know we're not alone.
  11. RENA0808

    RENA0808 Member

    Hi to you two young people!
    I hope you are both feeling well today.

    I thought what you both wrote about having this illness was great!
    You expained it in a way that a lot of us adults can not!

    If we tried to tell people the way the illness affects us they do NOT understand .............but when you kids say it then it sounds ok..........beleivable.

    Best wishes to you both for coping with this as strong young people!!

    Rena UK

  12. nerdieduckie

    nerdieduckie New Member

    I started having "Growing pains" in my legs when I was 14. They were non-stop and extremely painful. After about two years of putting up with my pediatrician telling me that, she finally ran some blood tests because she realized two years of growing pains couldn't be right, especially with the location of my pain and the fact that I hadn't grown since I was 11.

    I got sent to the rheumy from hell. He put me on elavil, which worked at first, but after 3 months I had all the side effects on the list. He told me that I was being ridiculous, that one can't have side effects on such a low dosage (25 mg.) He also told me that I should be exercising 1.5 hours a day.

    What HEALTHY teenager has time to exercise 1.5 hours a day while in high school? I'd really like to know...

    My mum did some research and found me a new doctor. AMAZING. But, I mean, I still had to be homebound my last two years of high school. It kind of ruined my graduation experience. Honestly I didn't feel like it was that big of a deal, probably because I hadn't been stuck going to the school building 5x a week for those two years.

    I've been told many times that it's better to get it while you're younger because you have a higher chance of recovery, but honestly, I can't believe that statement. I mean, obviously there's no GOOD time to get FM / CFS (which I have both, got diagnosed with the CFS a year later), but I mean...I still don't have some of my major life milestones out of the way. I have yet to get my license. I'm applying for disability at 19. I'm struggling to get through my freshman year of college. I'm engaged, okay, so that's one milestone out of the way, haha, but still...I feel like despite all the good things that happened in my life when I got sick...I feel like I got robbed of so much of my life.

    I've been in a bad CFS flare since late November so most of my spare time has been spent sleeping. I can't stand sleeping my life away. Unfortunately that's all I can do because when I need to sleep, it's the best thing for me.

    Like someone earlier said, it's often hard to find other teenagers to relate to with this illness. I was fortunate that I found one a few months ago, ironically, someone who I went to high school with. I found out she got sick the same time I did.

    I still have people in college going "...isn't that an old peoples' disease?" They aren't saying it to be mean, I can tell, they just honestly don't know anything else. It really ticks me off that more's not being done. It makes it really hard to maintain an optimistic outlook on life when some days you can't get out of bed and you I REALLY going to have to live the rest of my life like this? It just seems so intimidating with me not being even 20 yet.

    Fortunately, I happen to be a stubborn something-or-other, so I WILL graduate from college, just like I graduated from high just may take me longer.
  13. mmztcass

    mmztcass New Member

    My son got the pains when he was 12! He's 13 now! I could remember similar aches and pains like this when I was a tween. It was difficult. Then I grew up with undiagnosed hypOthyroid symptoms, then when I got older, I had RA when I was just about 30.

    My son have had symptoms like the 'growing pains'. He began wearing braces and notices the pains being even worst. I was the same way with wearing braces beginning at 12. I think when the jaws are being moved, the pains and the body positions are made even worst.

    We will be supplementing with CoQ10 (which I am already on and find it helpful with my FMS-like pains) and MSM ( I've ordered again and used to take in the late 90s) . I had stopped with MSM when I began with thyroid disease going hypERthyroid instead of years of undiagnosed hypO.

    I think we do what we have to do to feel better.

    Take care... :)

    [This Message was Edited on 01/03/2009]