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My 11 year old in pain- Dr. P
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schrode posted:
Hi everyone! I have not been here in a while. I am one of the members that comes and goes. I have FM and probably CFS. I remember many of you and the help and support you have given me. I am very worried about my son and would appreciate suggestions, kind thoughts and prayers.

My 11 year old son started having pain in his knees and legs 9/2012.
His bloodwork shows elevated ESR and CRP which I am told means he has inflammation and that it is chronic. It took several months to see a pediatric rhuematolagist. They took many xrays(all normal) of his knees, hips and lower back. The bloodwork still shows inflammation.

During the rhuematolagy appointment the doctor touched all of his joints. That is when I realized he also has pain when touched in his elbows and shoulders. The pain is in his joints and his muscles. The doc tells me it is not RA and it is not arthritis. The doctor also said he is supersensitive to touch in his joints and muscles. I asked the doctor if it might be FM. His answer was that there is no simple test for that and that if it is FM we are going to get him as ready as possible to handle that condition.

He is now going to physical therapy 2 times a week. For the pain he has taken ibuprofen then naproxen and now relefen(might be misspelled), none of them has helped. He is also taking 20mg elavil at night so that he can fall asleep in spite of the pain.

He is in pain at least part of every day. He has stopped complaining about the pain because then we give him a pill that does not help anyway. It is so terribly sad to see that your 11 year old has gotten used to pain being part of his life. This is unfornately now his new normal.

I am grieving for him but being careful not to show it. Some of the doctors appear to think that his problem is that he was sedentary. This is not the case. He is a scout that loves to camp and hike. He is a boy that loves to run and play. It is only the pain that has slowed him down.

I would appreciate any suggestions to make life easier for Zach. I would also appreciate suggestions for other diagnostic tests oralternative remedies ( I will check with his doctor first).

I am sorry this is such a long post, it has been inside me for many months, I just been in denial and angry. I still have hope that it might not be FM and that he will not always be in pain.

Soft hugs,

Deb
Reply
 
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katmandulou responded:
Hi Schrode, and welcome.

I'm sorry you and Zach are going through this. I have read that there is a discussion in the medical community whether FM exists in kids. Some say it's part of growth spurts, and wil resolve in the late teens. These kids are still in pain, and I'm glad your doc is taking his complaints seriously.

There are a lot of great links in the right-hand column. Also check out http://www.butyoudontlooksick.com/ . It has good tips for people in pain, and you have to check out The Spoon Theory - it will help Him explain to people what it's like to be in his body.

Have your doc check Zach for Vitamin D deficiency. Sounds simple, but we who live in the northern hemisphere are usually lacking in D.


Have the best day you both can possibly have,
Lou
 
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dollbug responded:
Hello Deb....MiMi in NC...so sorry about your son having to deal with so much. I also hope that he does not have FM. I guess I am assuming though that you do. Is this correct? I do think children today are not active enough. They seem to want to play video games and stay inside. It is important for them to get outside as much as possible.

Does your son drink sodas? If so, you need to encourage him to drink water instead. And make sure he watches what he eats as well.

As Lou told you have the doctor check his Vitamin D level which is important to a lot of people these days. Low Vitamin D can cause additional pain in some people and it can also affect other illnesses as well. It is a simple blood test BUT you must ASK the doctor to run it...as it is not one of the *common* tests that they check you for.

You should do some research on the wrath of the dragon, aka FM....and try to figure out what he can do that just might help him cope better. It is a very mean and ugly illness to deal with and most people do NOT understand it at all. Heck, there are some days I do not even understand.

Does he take vitamins? If not, then you might want to encourage him to do so. And please remember that not all vitamins are the same. The same goes with medicine as well. We are all different and what works for one may or may not work for someone else. So continue to allow him to try different things until he finds something that will help him cope better. You should also make sure that he allows enough time for whatever he decides to try before making a decision as to whether or not it is working. (normally 6-8 weeks)

I do hope that you will check out the info here under *tips* and *resources* and be sure and read the member toolbox as well. There are some good *tools* that he might also try. Memory foam mattress, hot shower at night using lavender bath salts so that he can rest better. Remember getting enough sleep is really important for all of us and especially children.

Has he tried using a heating pad yet? Or perhaps some Stopain Spray on the places which will not ease easily.

He should also learn how to pace, pace and pace even more. I am sure this will be a hard one for him to do since children are so very active. But it is really important.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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dollbug responded:
Deb.....I meant to tell you that Dr. P is no longer here.

His posts though are still here so you might want to read some of them. You can click on the 674 Discussions (in blue) in the right hand corner of this page where you see his picture.

We all miss Dr. P.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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schrode replied to dollbug's response:
Thank you Lou and MiMi. I do have FM and have learned a lot over the last 3 years of being diagnosed. I will ask the doctor to check his Vitamin D. He uses a heating pad occasionally. He has always been very active so it is hard to see him slow down so much. He is better in the mornings but by the time he gets off the schoolbus he is limping.

In my heart I am terrified that he might have FM but my brain tells me to wait and see and hope for the best.

Soft hugs,
Deb
 
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schrode replied to dollbug's response:
Mimi,

I am surprised that Dr P is no longer here. I guess you can tell that I have not been here in a while. Do we still have Caprice?

Soft hugs,
Debbie
 
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dollbug replied to schrode's response:
Hello Debbie....actually no, Caprice is no longer here either. I guess WebMD went through a change and decided that these people were no longer needed. We were really NOT told anything. I think it was in another community on here that someone spotted it. I know that is where I read that there had been changes.

Neither Dr. P nor Caprice let anyone know here that they were leaving. I think though this is how companies do things like this these days. The less we know the better it goes is what they think, maybe. I really have no idea.

We, FMers, though are still here and I guess we will continue to be here until WebMD decides to get rid of the site. A lot of our members actually did not follow over from the old site and then some members left this site to go to FB. Not everyone though and we have had lots of people to pass through the *revolving door* here as well. Some join and stay a while and then disappear and then return when they decide to....maybe just to say hello or to stay a while longer.

There are some of us who are oldie goldies though and I guess we will continue to be here.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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schrode replied to dollbug's response:
Hello Mimi! I am one of the members that comes and goes for the last 2 years. I have been having some back pain along with my FM lately. An MRI showed some arthritis and a small disc bulge in my lower back. Last week it was so bad that I could not sit down! I had a lumbar epidural injection on Tuesday and that area is feeling so much better. I am even going with the girl scouts this weekend. I will be sure to pace myself!

Soft hugs,
Deb


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