Fibromyalgia

General discussion regarding Kawasaki disease
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bethroth
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Fibromyalgia

Post by bethroth »

I took Gregory to the Ped. Rhuematologist yesterday and he was diagnoised with Fibromyalgia. He believes that Gregorys pain started right after KD. Fibromyalgia starts by an attack to the immune system. Which we all know that KD is a major attack on the immune system. Gregory met all of the requirments for Fibromyalgia. They have him on a new medication and we are hoping once we figure out the right dosage he will start to get some relieve from some of his pain. There is a genetic predisposition to Fibromyalgia also. Just wondering if anyones kids with lingering joint pain could possibly have this also? At least we finally got an answer to so many of our lingering problems.

Take care and hope everyones kids are doing well.

Beth

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Re: Fibromyalgia

Post by Momcat »

Beth,
That is really interesting. I know that they don't know what causes Fibromyalgia. Are they giving kids Lyrica? Sometimes the pain can be aggrivated by lack of sleep. Does Gregory get enough or good sleep at night?
Sandy

bethroth
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Re: Fibromyalgia

Post by bethroth »

Hi Sandy,

You are right they do not know what causes Fibromyalgia. All they do know is that it usually follows a tramatic attack on the body. whether it be an accident or some kind of infection that attacks the immune system. Lack of being able to sleep is one of the deciding factors when it comes to Fibromyalgia. It has to do with the Stage 4 sleep. Gregory does not sleep properly. He hasn't since KD. He goes to bed around 9pm and will wake up on the average about 5 times a night with some sort of pain or in a cold sweat. He then will wake up around 6 in the morning crancky and hard to get moving in the morning. They are trying him on Amitriptyline. He is starting out with taking 10mg at night. If we do not see any improvement in 1 week we move him up to 20mg then to 30mg if still no results. If this does not work they will try something else. This is one of the safer drugs for them to take. Amitriptyline is a antidepressant. They use it because it causes the body to be able to fall into a deeper sleep. They believe that with being able to get to a Stage 4 sleep it helps the body heal itself and help eliminate pain. Fibromyalgia also causes headaches, stomach disorders, inability to concentrate and memory problems, anxiety, skin problems, sensitivity to light and sound and of course the painfull joints. All of which Gregory has had for the last 5 1/2 years. I am just hoping that he can get some help from this medication.

Beth

CJsMOM
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Re: Fibromyalgia

Post by CJsMOM »

Hello Beth,
Sorry I'm just now reading this so late, but I found it very interesting as we are dealing with alot of pain in our son who just on Fri. turned 3. We took him to a Ped. Rhuematologist and ruled out arthritis and other, but Fybromyalgia never came up. They want to do a bone scan now, I don't want to. I myself have fybromyalgia, do you think it's possible CJ would have it too? Could you possably tell me what your sons symptoms are? I know our son will have pain in his legs mostly all night long! No rest for either of us...Please help me here, hopefully before the bone scan.
Thanks,
Nicole

bethroth
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Re: Fibromyalgia

Post by bethroth »

Hi Nicole,

I hope I can be of some help. With you having Fibromyalgia the chances of your son having it increase greatly. There is a genetic link that runs in families. With Gregory the pain in his legs (ankles mosly) started almost 6 years ago when he came down with Kawasaki Disease. At the time he was 5 and unable to stand or walk. It lasted months before he was able to even stand for more than a few minutes at a time. We took him to the Ped. Rhuem. 1 year after being treated for KD. He felt at that time it was just lingering joint pain from the KD and felt that if he would have had another dose of IVIG it may have helped but it was to late now. After another 4 years of pain we took him back to the same Ped. Rhuem. and he diagnoised him with the Fibromyalgia. This was Gregorys criteria for the diagnosis: Headaches, stomach problems, irritability, trouble in school, waking up 5 times a night, and he met all of the pressure point test criteria. Since being diagnoised he has been doing much better. He now sleeps through the night most nights. Wakes with little pain. Can stand, run, and play for longer periods of time without hurting. I would contact your Ped. Rhuem. and ask what they think about the possibility of your son having it also. If he does the treatment can be a life changing event. I don't know where you are located but we saw Dr. Robert Sheets. He is located in San Diego Ca. at San Diego childrens Hospital. He also works closely with Dr. Jane Burns who is one of the leading experts with KD. Good luck and please let me know what happens or if I can be of any help. I know how difficult it can be. As we have been living with this for almost 6 years.

Beth

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Re: Fibromyalgia

Post by CJsMOM »

Thank you Beth,
That helped. It's been so hard with our son, the only thing he can tell me is "mommy kiss it" or it hurts and point. We alternate between tylonal and IB profen and long nights. I'm not sure of the stumach aches, but head aches make since to me, he'll touch his head or ear alot or even say sometimes his eyes hurt. We are in Indiana, he see's Dr. Michael Dick (ID) in Ft. Wayne and Dr. Amy Woodward (rheumatologist) at Riley Children's hospital. Cj also runs fevers off/on. One day he'll be feverish, next he won't or it will be at night, sweating at night is common for him during the fever times. Cj's pain is in his knees but mostly in feet. If its been a rough long night he'll wake up 'grouchy' and limp for the first 10 minutes or so. I will give the doc a call first before doing a bone scan.
Thanks so very much!
Nicole

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Re: Fibromyalgia

Post by CJsMOM »

Beht,

Just thought to let you know I have spoken with Cj's Rheumatologist. She strongly believes it is not fibro. and said she has never heard of a toddler having Fibromyalgia. Just wondering if your Rheumatologist would say otherwise...Still struggling along...

Thanks,
Nicole

bethroth
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Re: Fibromyalgia

Post by bethroth »

Hi Nicole,

Gregorys Rhuem. told be that the average age of kids to get Fibro is around 13. He said he has seen it is kids alot younger than Gregory but it is not very common. It is interesting that you mention the fever flares. Gregory goes through episodes of fevers that will last 1 hr to 1 day that will get as high as 105. There is no explaination for them. Gregory is a very sweaty child. He will sweat after the least bit of exertion. He will wake up in the night looking like he just came out of the shower. I have 5 children 3 older than Gregory and 1 younger and none of my other children have had the problems that he has had. Keep me posted as to what happens.

Good luck

Beth

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Re: Fibromyalgia

Post by CJsMOM »

Yep...Fevers oh how they linger!

Monday and Tuesday his fever was between 102 and 103, now today (Wed.) hardly a fever at all! Plus might I add he has Asthma, Food Allergies- very severely- peanut; eggs; milk; wheat, also EE short for Eosiniphilic Esophagitis and more...
Added all together he has alot of challenged days, less great days, abundance of busy days and is only 3 yrs old!

Oh did I forget to mention all the PAIN in legs & feet, SWELLING in hands and sometimes feet, oh ya don't let me forget about the chapped lips that peel at least 4 out of the 7 days!Oh and Atopic Dermatitis...do let me go on....

Our list is big and our Dr.'s don't link anything together?????

Have a great day and take care...

Nicole

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Re: Fibromyalgia

Post by MikesMom »

Wow, it is amazing how these kids go through there on set of issues after KD. Although my son has not experienced any of the symptoms that the two of you have mentioned, he is also a very, very sweaty child. I have asked about this for years, my hubby does not think it is an issue either as he say he's very sweaty too so Michael must take after him. It is interesting that other KD parents are noticing this. Michael has been to hell and back with the heart complications and nose bleed issues from the ASA and blood thinners. but sounds like each child has different concerns that become problematic after KD.

Again, wow
Pauline
"Creating Awareness One Beat At A Time"
http://www.kdcanada.ca

CJsMOM
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Re: Fibromyalgia

Post by CJsMOM »

Hi Beth, Pauline,
Thanks for all the response. By the way...fevers back.
Anyways, I finally put CJ's Kd story up if you're interested in reading it and seeing his picture.
You lady's have a wonderful day,
Nicole

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