Pediatric Fibromyalgia- Juvenile Fibromyalgia

[FibroCanada]

Hi Diana. I just started on Guai 11/11 after seeing DrSA at FTC. I believe it is working! Since then, I have been wondering about my daughter, so I did a search on Pediatric Fibromyalgia and your video of your son came up. Olivia is 4, and we are thinking about starting her on the Guai Protocol. Everything adds up. Can I ask, how did you get your 4 year-old son to swallow those big pills?

Thank you Diana, for all of your time and energy spent educating those suffering out there.

[TheDBZGTFan]

im a fibromyalgic patient, 18 years old just started taking guaifenessin, now taking it for 14 days, no effects at all, i hope it'll help me after a while taking it, the disease is really painful i can't stand it, can't imagine the future wit it, i got it when i was 17, im puttin all my hope to guaifenessin, as i noticed i got fybromyalgia right after my nervous breakdown

[brianaquince15]

@TheDBZGTFan I do hope it helps you get some relief. Make sure you are tested for Lyme Disease was well. My son and I both found out we had Lyme Disease, that is to day, our fibromyalgia was triggered by Lyme Disease. Be aware that Lyme testing is tricky. You can have a negative result on a blood test, and still have the disease. It is a very complex disease, and the symptoms mimic fibromyalgia exactly. However, Lyme Disease is curable, whereas fibromyalgia is not.

[TheDBZGTFan]

@brianaquince15

how do u get lyme disease diagnosed, through what test? and from which specialist?

i hope ur sun can get or is well adapting to everyday life cuz if i try to tell the enormous pain which at least i experience through the whole body, i cant even think how to start, only i and the xperienced patients cud probably know what hes going thru.. i just read in the future wit improvd cell terapy theyll probably treat fibromyalgia completely, im not sayin its tru 100% dont 4get to answer

[avipp1]

My 14 year-old-daughter was recently diagnosed with fibro/chronic fatigue. I've had it for 15 years myself. I've been thru the guai protocol and still take the Mucinex every day as a maintenance dose. It did help me a great deal. This boy is very encouraging! My daughter has an attitude just like him. I'm so proud of her.

[surfercouple]

It's cool that you went into remission. Did it just happen on its' own, or was there anything you did that helped make you feel better?

[niseynisey]

Thank you for sharing his story! I was diagnosed with Fibromyalgia at the age of 14 and went through pretty much the same things as Alex. i hope his story brings comfort to those who are dealing with this disease today, as it brought comfort to me and I've been in remission for 10 years. **hugs** :)

[xjaimiex1995x]

He is so luckey to have such an early diagnosis. I am 16 and have extreme pain all over my body since i was 5. I have been at Sickkids in toronto Canada since i was 8. and they are just now starting to figre this out. good luck to Alex and your family :)

[surfercouple]

@xjaimiex1995x HI XJamie- So sorry to hear of the rough time you've been going through. It's an awful thing to be 16, and sick. Especially since so much of your childhood has been plagued by pain. Doesn't seem fair. Just recently I've been learning that fibro can be triggered by Lyme Disease, and the Lyme tests are so flawed as to be useless. Both Alex and I have tested negative for Lyme.I have started both of us on Lyme treatment since symptoms are identical to fibro. Something to consider.

[dianacwolf]

Yes, I know of the study you are referring to, but studies can be flawed. Think of the flawed study showing that the Mumps-Measles-Rubella vaccine causes autism? How many parents chose not to vaccinate their child for those diseases out of fear of autism? Now, those diseases are actually making a comeback. Turns out that particular doctor was looking to gain notoriety. He accomplished that, all right. Thank you for thoughts and comments. Regards, Diana

[justmeinthisworld09]

Sorry to tell you this, but the Guai protocol has been proven to be quackery. The drug itself does nothing for FMS, its possible it is something other than FMS or he is getting relief from the placebo effect..feel free to research it yourself..

[dianacwolf]

@justmeinthisworld09 I forgot to ask what your interest in fibromyalgia was. Are you doing your research for yourself? A family member? If you are looking for a particular piece of information, I can probably help you out. Thanks to my videos, I've been in contact with thousands of other people with fibromyalgia over the past seven years. I have learned so much, and I share what I learn. There are many, many other good treatments beyond Guai. Both my son and I do other things beyond Guai.

[ValerieLumley]

I am a recovered fibromyalgic who left the care of the medical profession to discover the cause and cure of this horrific condition without drugs, and am living proof you can cure this and take back your life. Symptoms are mistaken for the cause and treatments that help do not cure. Please, do not be discouraged by failed hope and keep going!!!

Valerie Lumley, Recovered Fibromyalgic and author of

"Curing Chronic Fibromyalgia - Choosing What Works"

[sgoodell4]

This video helps give me hope that one day I will find a caring doctor that will take her symptoms seriously and I can finally help my poor little girl. All I want is for her to able to play like the other kids without it causing her pain or illness. I wish to longer see the pain and saddness in her eyes and the defeat when she finally gives up and just lays down (sometimes in the middle of crowded play area).

[dianacwolf]

I'm glad the video was helpful to you. Dr. St. Amand, (the doctor my son and I see in southern California), always says Moms should listen to their instincts. It sounds like your instincts are speaking to you strongly. There is a Pediatric Fibromyalgia Support Group on Yahoo groups. I'll email you the link offline. A lot of good resources there for parents. I'll email you the link. My son was four when he was diagnosed. Today, he is doing really well. Hang in there. - Diana

[sgoodell4]

This was so beautiful! I am in tears. My daughter has been in and out of hospitals with no diagnosis since she was 1. Now she is 4 and still she suffers everyday with chronic pain, stomach pain, phantom low fevers, headaches, irritability and trouble sleeping. Doctors keeps telling me she is too young for Fibro. I've been pushing for them to check for the last year because my sister has it (diagnosed @ 17) and I also have the symptoms (no diagnosis confirmed yet because of no insurance.

[ddtoots]

i feel so upset. on a website i am on, there is a post about a man who thinks his exwfie is needlessly "druging" their daughter. who was diagnosed with fibro.

he thinks its jsut for attnetion and everyone agrees.they say 16 is too young to have fibro. taht it doesnt exist. what is up with these kinds of idiots! i feel so upset.

[dianacwolf]

Hi ddtoots, Thanks for writing. Fibro is such a difficult disease, since we don't have a blood test yet to "prove" our disease. (A blood test is in the works thanks to the successful City of Hope tests in Los Angeles.)  My own brother has said: "I'm not sure I believe in fibromyalgia." Like it's the Easter Bunny, or Santa Claus. Dr. St. Amand told me to trust in your parental instincts, and do what you think is right for your child. A Mom knows when their child is hurting. - Diana

[dotslady]

Alex is a sweetheart! Because of his size, I wonder if you know anything about celiac disease? Google 'fibromyalgia gluten' and start reading if you're interested. Fibro peeps often have GI issues. I had body pain as a child/neuro issues, too. I haven't read the book you recommend, but I did read The Vitamin D Cure (Dowd) and it helped me recover from fibro (self-diagnosed). It's nice to come alive at the ripe age of 47:). If you haven't checked his vit D, Bs & had a full iron panel, consider.

[dianacwolf]

Wow. Amazing that you mention this, because I have finally gotten my migraines under control by going completely gluten-free. I've had migraines since I was 18, and I'm now 39. I also now take Vitamin D, and B12/Folic Acid. I just added in an Iron supplement, because I always come up borderline anemic on my panels. I had pregnancy-related anemia when I had Alex. Alex did not gain any weight for two years, and hardly grew, (part of the reason he is small). We cut our dairy & soy & he grew.

[dotslady]

INTERESTING news indeed! Celiac in kids can have no symptoms except size; sometimes disposition (angry, tired & so much more). Also research lectins (other dietary proteins) tinyurl c om/agbz4t ; which would make sense given Alex's growth after removal of dairy. From link: I esp like The Lectin Story (Sullivan) (has great paper on Vit D also).

I had headaches from 18 (1x/mo) worsening til CD dx at 44 (4-5x/wk), too. Gone now :). Also google 'leaky gut' - great site out of uk. Best2u!

[dianacwolf]

So, how do they test for Celiac's in children? Alex has been growing very well since we removed dairy from his diet, but he does have bouts of just what you described-- being irritable and tired. I can't figure it out because his muscle pain is so much better. He is very limber and agile now- one of the fastest ones on his soccer team. He's muscular and getting tall. Hmmm... lectins, gluten and Vitamin D. I have some reading to do. Thanks for the info. :) - Diana

[Swagster407]

Nice vid. I know of an unkown cat that goes pretty hard. Search "Vthov Obama Inauguratiion Song" and you'll see what I mean. Fiyah, pure fiyah. I can't believe people are sleeping on this guy.

[Shazzatech]

Hi Diana,Shane here.I love this video & can see that your son Alex is very much loved & has allot of support.I hope like you he soon feels better & overcomes this terrible affliction which as you know because of my work I have seen the pain first hand & so know it's not easy.I will be in touch again soon via email.take care Love to Alex he now has a friend in Australia thinking & praying for him now.Love & best wishes,

Shanexxxxx

[dianacwolf]

How old are you? I am now almost 40, but I feel better than I did when I was 20. I am looking forward to living to be well over 100, because I feel so good and enjoy each day again. There was a time when I was in so much pain that I just wanted to remove my consciousness and live in a robot body so that I would not have to feel pain anymore. And, I know only somebody with fibromyalgia can understand a statement like that. - Diana

[sweetsmile1]

Maybe there is hope for me. maybe. i have never known what it is like to be pain free....i am so young, yet so old.

[PicturePerfectYeah]

I used to complain about it but then someone taught me your only as unable as you tell yourself you are. It took a while but I think I finally get it.

I do whatever now and Ive learnt to just ignore snide remarks and live every day to the full. If others want to waste their time trying to 'beat you out' with silly things or they waste their breathe telling you your faking then thats their tough shit. Lol.

What a cute little boy!

[PicturePerfectYeah]

I have fibromyalgia.

I'm 15 and have been showing signs for ages. Only just got an actual name 1 year ago.

Its fricken hell. People touch you and its like "OW DONT TOUCH ME!" Lol. People tell me Im faking it. But I can feel it and it's very much real. People try to tell me all the conditions they have as if its some stupid competition and they think that when they have pulled muscles they know what it feels like.

continued....

[freakaleak114]

I know just wat u feel like! I'm 15 too.

(got sick in '02, diagnosed Feb. '07)

and I hate when people touch me!! OMG! Then when I jump, they're lik, "I barely touched u!" or look at me lik I'm krazi!

2 weeks ago, this guy came up from behind me, picked me up, and dropped me!...on my knees! Hurt lik hell!! But I just remember that they dont know/understand. :P

[ufarted]

what an inspiring video, thanks for posting it :)

im 14 years old and was diagnosed with fibro end of january this year...i am struggling at the moment with everything, i've missed lots of school (last time i managed to go in was 14th january) luckily i have home tutors coming in now...it hit me pretty hard as i was always so active, horse riding mainly...as you can probably tell from my videos!

anyways thanks for posting the video,

xx

[dianacwolf]

Hi ufarted- Great username! :) Glad you enjoyed the video. I remember my world starting to fall apart right around your age. Somehow when the hormones kicked in as a teenager, my body started to hurt more and more. There has got to be a strong relationship between hormones and fibro. My son has had a lot of ups and downs in the past six months, too. I need to do an updated video for him. But, overall, he's doing very well. He's in a very challenging school program, (continued),

[dianacwolf]

(continued) he's in accelerated kindergarten program- Dual Immersion. This past trimester he scored a perfect 100 in Spanish. (Neither my husband or I speak Spanish at home. We are both native English speakers.) My son had to come home early several times due to muscle pain, so I would home school him the rest of the day. I am "home schooling" myself in Spanish, using iPod podcasts. I listen to 12 different Podcasts a week. Together, we are getting through this, and winning. (continued.)

[dianacwolf]

(continued) My son had to stop Kickboxing during the rainy season. He is very sensitive to weather changes. But, he is feeling better now, and wants to box again. We are headed to Hawaii as soon as school ends, and he wants to surf. He is ready to be active again. I've had to go to the school twice this week to give him Tylenol, as he's head a tough week with regards to pain, but he hasn't wanted to come home early. He's determined to make it through. (continued)

[tjorggy11]

im 13 and was diagnosed with fibro at 8 after bieng in the hospital for a couple weeks with ruematic fever.

I have noticed that im in a lot of pian as i grow and go through puberty but the more pianful it gets the more want to stay in school and not think about it

i think it would be better if you did that too, as ou said you missed alot of school from it.

I have even got to where i dont even want to take pills for anymore because i learned that the more active i actually am the (continued)

[tjorggy11]

(continued) better i feel and the more i dont think about it.

It may sound like im not that bad off but i do have it juat as bad as you but I also have my mom who has dealt with fibro for 35 years and she helps me a lot especially with things to help with your regular day.

I just try to be tough and mostly ignore the pian.

I hope evryone does better with their fibro and other diseases.

-jj

[purefire47]

your son inspires me

[dianacwolf]

Thanks PureFire. Do you have fibromyalgia?

Alex is doing really well. We were just watching a video of his preschool graduation from June 1, 2007. In the video, he was doing "Heads, Shoulders, Knees and Toes" with his class. My son just commented: "It used to hurt a lot when I did that song, but it doesn't anymore." He bent down and touched his toes. "See, Mom? I can touch my toes now." Stuff like that just makes me cry.

[purefire47]

No but I do suffer with CFS. I haven't been as fortunate as your son in the sense of continuing with my usual activities. I was forced to drop sports etc. Watching this video makes feel good knowing theres a kid out there whose fighting strong and leading a good life with something as frustrating as FM/CFS.

[nala92]

luckly my 2 cats let my mom know when i dont feel good they come up and are glued to my bed and me

[dianacwolf]

Nala- That is an awesome goal! There is a lady who is publishing a book about fibromyalgia. She is including my son because I think he is the only child she knows about that has Juvenile Fibromyalgia. Last time I searched on the web, (its been a while), there wasn't a little of info available about kids with fibro. Do you want me to email you her info ? Her book deadline is May, I think. (Which reminds me I haven't send my stuff in.) :) - Diana

[nala92]

i search the web alot trying to find out stuff there is like nothing

[dianacwolf]

Yes, that is why I decided to start a blog about my son's experiences and do the video. I want to do another video, tracking his progress. Would your Mom let you have a blog, like on blogger, or something similair? Or, start a website? You could just use a penname, or just your first name, to protect your identity. It would be a good project educationally, and also help spread the word about Pediatric Fibromyalgia. I never mention the town where we live for the same reason. - Diana

[nala92]

my and mom have wanted to start a website but she probably will i will talk to her about it though and will email you so we wont have to do it this way

[nala92]

that was good i am 15 was diagnosed when i was 12 after missing 2 months of school cause i was so drained of energy but just like him i have a great mom who raised me to not let fibromyalgia controll my life

[dianacwolf]

Hi Nala! Great to hear from you! I think the most important thing we did for my son was to just let fibromyalgia be another part of his life, and, as you said, not rule his life. We stopped Kickboxing for the winter, because he hurts more when it rains. But, the warm weather has returned here in California, so next week, he is starting daily swim lessons again, and the week following, he will begin Kickboxing twice a week again. He also now rides his bike 2 miles a day to school. :) - Diana

[nala92]

I can agree rain makes me hurt but for me the hotter the weather the more i hurt. But as it gets warmer in cali i can hopefully domore stuff again.

[dianacwolf]

Hi, Nala! How cool! I didn't know you were also in Cali! We live an hour south of San Francisco, and five hours north of Los Angeles. We used to live on the beach in Morro Bay, but the damp ocean totally aggravated the fibro. Absolute WORST place to live with fibro. Too bad, as I love to surf. Still do, but just live 12 miles inland now, so we don't get hit by the fog all day. We drive to SoCal to see Dr. St. Amand in Marina del Ray for fibro 2 or 3 times a year. - Diana

[nala92]

i am in ventura county about 1 to 2 hours from los angeles i go to ucla i have some awsome doctors there

[dianacwolf]

I imagine UCLA must have some incredible medical facilities. I only ask because you are not too far from Dr. St. Amand. At some point in your life, you may want to consider seeing him, too. Well, maybe make that in his life. (Dr. St. Amand is around 80, so I'm not sure how much longer he will still be in active practice.) His approach to fibro is kind of different, and kind of controversial, but its cool because it gets folks off the nasty pharmaceuticals for good. - Diana

[nala92]

im in the childrens rhuemtalgy center there and is aswome there those r the doctors i actully would talk to at first cause every other one told me it was all in my head

[dianacwolf]

Wow! That is awesome! It is very, very rare for kids to be diagnosed with Pediatric Fibromyalgia. You are the first one I've heard of to be diagnosed outside of Dr. St. Amand's patients. How long did it take for them to figure out you had fibromyalgia?

[nala92]

um it stared in march of 05 i diddnt get diagnosed till decemeber of 05 it was hard and long

[nala92]

but i first went to them on the day i got diagnosed the doctor was an intern and knew right away

[dianacwolf]

Nala- This is such awesome news! If you were diagnosed by an intern, this means that at least one medical school is now teaching medical students that fibromyalgia occurs in children as well as adults. This is so encouraging. A lot less kids will be misdiagnosed with AD/HD and other such things, (due to spasming and fidgety muscles), and be properly diagnosed with FMS. You totally made my day with this news. Your intern is AMAZING! UCLA rocks!

[nala92]

yea they do they r caring and really supportive i wan to be a spokesperson for juvinelle fm to make it more aware it kids

[dianacwolf]

So, I guess we do adjust things a bit for fibromyalgia, but he still leads a wonderfully active life, and is an outstanding athlete. He loves school, and asked to be in the Dual Immersion program at school, (his classes are taught exclusively in Spanish 2.5 days a week, then exclusively in English 2.5 days a week.) By 2nd grade, he'll be fully fluent in Spanish. He loves it, although it does mean a lot of extra homework. He leads a full active life, like any other kid, really. :)

[Sharpclaw007]

Thanks for putting this great video on. I am currently going through a tough time as well. We are not sure but my mother thinks that I may have pediatric fibromyalgia. I am not as young as your son (I am 13 and have had pain since 11) but I still feel what he is going through. I hope God is with you and your son for the rest of both of your days.

[dianacwolf]

Hi SharpClaw! I'm so happy to hear from you! Fibromyalgia can occur at any age. There is a wonderful book about Pediatric Fibromyalgia by R. Paul St. Amand, MD. Your local library may have a copy, or you Mom can probably order one through Amazon. Great book. The great thing is when you're young, you can reverse the disease very, very quickly, and get back to just being a normal kid. My son is back to playing sports, and enjoying just being a little kid again. There is great hope for you.

[Sharpclaw007]

Thanks! But to start the healing process I have to be Diagnosed first. My rheumatoligist won't diagnose me because "She is too young to be diagnosed with fibromyalgia". I don't think he is keeping up with the times. 20 years ago when he started, maybe that would be true, but not today. Your video has given me hope I thought had long gone. I say again... Thank you.

[urnotalone38]

what a doll... he is blessed with a mother like you...tlc

[dianacwolf]

You're very kind. :) When my husband and I were first married, we went to Germany so he could meet my grandmother. She was very, very special to me. We went to the church in her town, knelt down, and prayed for a child. Alex was created soon after, on Valentine's Day, (we know 'cause hubby travels a lot.) We consider him a gift, and a blessing. When he asked us where babies come from, we told him that exact story. He asked if we could go back to that church there and request a baby sister!

[cris8249]

Diana, great video! You're a good mom. :o)

Cris Roll

[dianacwolf]

Thanks Cris! It was hard deciding which course of treatment would be best for Alex because boys sometimes outgrow the disease at puberty, (girls don't seem to have this hormonal advantage.) But, I worried about all the years between now and puberty. Kids with Pediatric Fibromyalgia are often mistakenly diagnosed as ADD, due to their constant fidgeting from painful muscles, and their very restless legs, (RLS.) We figured Guai was Alex's best chance for a normal childhood. So far, so good!

[dianacwolf]

Hi Casey! I love your positive attitude! I believe as well that there will be a cure for fibromyalgia within our lifetimes, and if I don't live to see the day, my son will. I'm glad he has the advantage of knowing WHY his hands hurt when he writes, and WHY his body does the strange things it does. Life is already better for children with Juvenile Fibromyalgia. Awareness makes a huge difference. I'm just glad Alex can do whatever sports he chooses to do, and be a regular kid. - Diana

[casey7777777]

Thanks for sharing. I am 46 and I'm a 3rd generation FM patient. Like you, there was no diagnosis for my inability to participate with other kids all thru school. I was formally diagnosed a year ago, but by playing "connect the dots" with my doctor in reviewing my medical records, there was no doubt my FM was a genetic neurological disorder. By the time your son is 20, there will be a cure with gene therapy.....Casey