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FM- do kids have it, too?
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schrode posted:
Hello FMily! I have not been around for awhile, I tend to come and go. I hope all of you are doing as well as possible.

I was wondering if you have relatives that are also living with FM? Especially children. My 12 year old son has been in pain since 9/2012. It is his knees everyday and other joints (shoulders, elbows) off and on.

At this point doctors have only been able to tell me what it is NOT. We have seen the pediatric rhuematologist, orthopedics, nuerology, ER. He has had labwork, xrays and a bone scan. The only thing that showed in his bloodwork was chronic inflammation. There is no injury/trauma that started it all. Just a regular day.

All of this is complicated by his anxiety and Asperger's. I was in my 30s when my FM flared up. How old were you when you saw the first signs and are any of your children effected by FM?

Soft hugs,
Deb
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booch007 responded:
Good Morning Deb,

I can't give an answer for FM and children. Too bad Dr P is gone. But I will share that my 6'5" son, had leg pains and knee pains for years during that time. I now think it was growing pains. My other son had nothing and is 5'10".

I used a water bed in those days to help him. Itw as aheated source for the whole body and it helped with his height as they are longer than a twin bed. It took a bit for me to figure it out. So alot was in his twin bed early on. I would tell him more milk for the calcium and hydrate (always had a glass of water by his side.

This son also had loose ligament syndrome. So I wasn't sure if it was related to that too.

Who knew in the end he would be so tall. I don;t know if this helps or is what is going on with him, but I wanted to share.

Good luck. I also gave him Motrin at night for the aches he had.

NancyB
 
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mnjeepguy responded:
This is interesting to me. I grew fast at that age and am a taller fellow at 6'. I had a lot of knee and wrist pain, some in many other joints. I was always on my bike and running around though. My mother called it growing pains or juvenile arthritis. I have very loose ligaments in my knees and somewhat loose everywhere else. I was never diagnosed with anything, but they gave me PT for m knees in my late 20s. I tore cartilage easily and had knee surgery at 30.


Now at 38 I have more joint pain and added soft tissue pain. I am treated for FM but being male and younger they have not given me the diagnosis. It is not very common in men or the younger people. In your sons case as well as my own, everything looks good on paper. Great blood work, x-rays look ok, no red flag. Something is going on. The chronic inflammation is likely to have a source. I hope you figure out what it is. FM is not considered an inflammatory disease, but many seem to have it along with other health problems. He may have arthritis or even just severe growing pains.


The best bet is to keep digging if he is suffering. If you have seen a specialist without answers, see another. Sometimes you just need the right Dr. I have seen 2 rheumatologists, the first was almost a waste of time, the second has been excellent and wants to figure me out.


I know how frustrated you are. You are a good mom for being concerned about his well being and looking for answers. I hope you find them.


Cory
 
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Anon_10089 replied to mnjeepguy's response:
Hello-

I am positive I had FM as a child, since the pain and fatigue I had then carried into my adulthood and right into my diagnosis. I had insomnia as a young child and "growing pains" quite often. I still have those same "growing pains". I should be very tall!

However, FM is often not paired with the inflammation. Sometimes it seems it is (just from what people say here) but for me, I never have tested high for inflammation. Hopefully, you and your son's doctors could pursue that a little more.

I believe that a higher level of inflammation like that can even come from a severe food allergy or something like that. There is so much coming out right now about the health of our gut bacteria and how much it can affect everything. I'm not a health professional, I just read a lot, so I'm just throwing things out here!

I hope you guys can figure things out. It sounds like a very rough situation for you and your son.
 
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iammhannh responded:
Hi,

I got diagnosed with FM when I was about 12/13 and met a few others who also had it and were similar ages to me. For me it is hard to pin point when exactly it is I got the condition, since when I went to the doctors aged 11 I discovered that the muscles in my back werent working. After this was sorted I still was in a great deal on pain so I circulated to about 5 different hospitals who all tested for different things; I was xrayed, had an MRI scan and various tests but it took a year for me to be diagnosed with FM with the majority of my pain felt in my back. It is believed that possibly the back problem triggered it, but through my childhood there were also various symptoms of it such as pain all over, an awkward posture, constant figiting, headaches etc so there is also evidence to believe that I have had it for longer.

A way which may help to be diagnosed properly with the condition was to suggest to the GP or another medical professional that your son may have FM and then they are more likely to redirect you to a specialist in that area as this was the route that worked for me. I received my diagnosis and all my care from a children's ward in an orthopaedic centre and recieved help from a physiotherapist, consultant, psychologist and occupational therapist. This is the sort of place that I think would be most helpful for you son if you can get a referral there.

I have evidence to believe that often, people who develop FM as a child have quite a good chance of growing out of the condition so I'm 17 now and have kept this positive approach toward the condition. The pain has improved, and even though it is still bad, all the help which I have recieved through hospitals and the positive outlook which they helped to get has helped me so much psychologically and has given me the greatest possible chance of growing out of the condition; much more help than any medication ever could.

I hope that you get the diagnosis which you want, and that your son recieves the help he deserves. Hope this helps
 
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bette_kaffitz responded:
Deb,

Yes, kids do get FM. Luckily it usually hits adults, but some children do start early--talk about LUCK!

One other thing that you should consider. Arthritis does not discriminate by age. One of my brother's friends had juvenile rheumatoid arthritis. (Talk about more bad luck!) This was back in the 60's, and the treatments were nowhere near what they are today. Bobby was on prednisone, and it is definitely not something I would want a child of mine to endure.

So, I guess the bottom line is that your son should have MORE testing, more visits, and more stress--for the short term--until you find out what the problem is. Don't ever give up. The sooner you find out what the problem is, the sooner you will be able to treat it--and possibly stop it.

Fibromyalgia does not have a cure--today. But there are so many other conditions that can be helped. It is so important that you get a diagnosis for your son. Stay on it.

I cannot imagine how much this must hurt you. You know how much your life has been impacted. Seeing your son with a similar future must be heartbreaking.

I was 28 when my fibro began late in my second pregnancy. That's 42 years of life with this condition. It is a long time--a long time of finding out more about what does and does not work for me. Your son is starting on his journey now. I sincerely hope that he does not have any type of rheumatic disease, and is just suffering from whatever "growing pains" are. These mysterious pains have always been around. And they have also always stopped with the end of the young person's growth spurt. Let's hope this is what is happening to your son.

Better
 
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rowan73 responded:
Good day\night all! Lookie my first post! Hi, I personally have known I had fm since maybe 6 yrs old. No docs back then unless you were bleeding more than a band-aid could handle(1979 or so). My situation is odd. The doc that diagnosed me officially had said it didn't exit 3 yrs earlier, go figure. I do have 2 sons. Both have cerebral palsy, most likely because of complicated pregnancies. My eldest is 15 & also has a diagnosis for autism and aspergers(longggg story). My youngest (13) may also have a touch...anyway, they both have complicated heLth stories. No diagnosis of inflammation but their CP was for hypotonia-low muscle tone. When tested with the ELISA test they found strong, unusual allergies and infections for molds/fungi that are supposed to be normal and helpful. Overgrowths, his immune system was in chronic overdrive. Once we got those under control he was not getting sick so much and began to move more easily---& very quickly..he flaps & paces and talks..a lot! I don't know if this helped, but it might be a way to look..an allergist should be able to look into this test, if you can find one that knows what you're talking about. The test was developed by the same scientist that developed Gatorade...knows how the body should metabolize and how our Spectrum kids may differ. I hope this made sense. Good luck, we're pulling for you and your son.
Smile you're never alone, and laughter is the best medicine. As Bobby McFerrin said Don't worry, be happy...an anthem for me...remember stress makes it worse ;)
 
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schrode replied to rowan73's response:
Thank you all for your stories and kindness. Rowan73, My 12 year old son is also diagnosed with Aspergers/Autism. We keep moving forward and look for answers to help him with his pain. He is now starting to have problems with anxiety and depression. We will PUSH (pray until something happens) forward.


Soft hugs,
Deb
 
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franr responded:
Dear Schrode


I have was a school nurse for years (retired) but still doing per diem and unfortunely I saw many children with fibro and some children undiagnosed. Some of these children had some type of trama.And it does run in families. .Puberty may be a trigger in some cases. The parents did take them to specialists as you did with the same outcome. We are lucky here in Boston to have the World renown Children's Hospital who deal with these problems .If a child was being treated by a primary MD I always referred them to Children's. We can only hope and pray for a cure for this terrible disease that is affecting so many innocent children and adults. Peace to you Fran..
 
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mariajohnson responded:
In children, fibromyalgia is called juvenile primary fibromyalgia syndrome (JPFS). Some doctors put children with FM on a very small dose of a tricyclic agent or muscle relaxant. Raising a child who has fibromyalgia is a real challenge.


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