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Juvenile primary fibromyalgia

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Fibromyalgia
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Posted 3/6/2020 4:48 AM (GMT 0)
Hello, I am new here. My daughter is 18 and was just diagnosed with juvenile primary fibromyalgia. I was wondering if there was anyone here that had this or had a child with this that could help me understand a bit about what she may experience?Right now she is starting to have pain and muscle spasms in her shoulders and hips and legs. She has pretty bad headaches on almost a daily basis. They are putting her on Cymbalta. Has anyone had any luck with that? Thank you! Any information is appreciated.
Posted 3/6/2020 5:48 PM (GMT 0)
Hi, Mana, and welcome! It probably is frightening to you to have your young daughter diagnosed with this illness. But I have had fibro for over three decades and have still enjoyed a full and enjoyable life in spite of this illness. The key is to find what helps keep the pain under control. Unfortunately, what works for one doesn’t necessarily work for another so it’s more a trial and error situation.

The main medications they use for fibro are Cymbalta, Lyrica, and Savella. Some had success with them and others stopped taking them because of side effects. Lyrica is one medication that women stopped because they put on a lot of weight. It doesn’t happen with everyone but we had several members stop Lyrica because of that.

A couple of things you might try that aren’t medications are vitamin D3 and magnesium malate. I do take both. Many are deficient in D3 because they are either inside a lot or they use sunscreen when outside. You can have the vitamin D levels checked with bloodwork. When my bloodwork hit “30” for vitamin D3, my doctor said I didn’t need to supplement it anymore. But it’s difficult to overdose on vitamin D so I continued and now I’m up to 55 and holding. If you are low in D, you can have more pain! I take 5,500 IU of D3 a day and it does help.

Magnesium malate has been shown to help with the pain of fibro also and I also take that daily.

I have heard turmeric helps with pain but I have tried it. You find turmeric in curry I believe but there are turmeric supplements out there too.

With all of these over the counter things, your pharmacist should be able to help you, make sure things don’t interact, etc.

Other things I use are ibuprofen with food, Tylenol, and a prescription muscle relaxer called Robaxin (methocarbamol). It’s a tried and true muscle relaxer. The first time I used it was back in the late 1970’s! They usually prescribe two tablets four times a day but I started at one tablet four times a day. The pain lessened and I backed down to three a day and now I only take two tablets a day...12 hours apart. The beauty of this medication is it is scored so you can cut the tablets in half! I have no side effects from this medication. I take a lot less than is prescribed but yet it truly helps with my pain.

It’s important to keep moving too. If you sit or lay too long you will be stiff as a board and have more pain.

At the top of the forum you will se Fibro 101. There are links to good information about fibro and you will learn a lot there. There are links about vitamin D3 and magnesium malate too.

I hope these suggestions will help your daughter. I’m looking forward to getting to know you better. Don’t hesitate to ask questions because we are here to help you. I hope to hear more from you soon.

Sherrine
Posted 3/7/2020 8:34 AM (GMT 0)
Hi Sherraine,

Thank you for all the helpful information! She does have a Vitamin D deficiency. She has been on prescription Vitamin D for about a year. Her level was in the single digits! I’m pretty sure it has gotten up to the 30s now. She does not take the Magnesium part of it, but her doctor has her on Vitamin B3 complex and a multivitamin.
She’s had a rough year. She was diagnosed with mono/Epstein Barr virus last Year in March. She was one of the 20% of kids that had active infection for up to a year. She had fevers until just about a month and a half ago. I was so scared she had cancer or any number of things. She went to all kinds of specialists. She ended up at a very good pediatric rheumatologist and infectious disease doctor. They figured it out. I believe that I have read that the juvenile primary fibromyalgia may be caused by EBV? I could be making that up. Lol
Anyway, I will look into the tumeric as well. She starts the Cymbalta this coming week as she was already on an antidepressant and had to ween off of it first. She has depression and anxiety as well.
She’s a senior in high school and has missed most of her senior year. We have had to fight the school every time we’ve turned around. We’ve heard it all, “other kids can go to school with mono. . .” We have had numerous doctor’s notes that’s excused her from school. She’s been treated as though she was being dramatic by both the teachers and her classmates. It’s so frustrating!
I will definitely read up on the Fibro 101! I don’t ever know what symptom could be the Fibromyalgia when she tells me something. She asks me things all the time!

I know I was all over the place on this response! Sorry! It’s nice to find a place to talk. I am disabled myself and it’s tough to get out to socialize.
Posted 3/8/2020 6:01 PM (GMT 0)
Mana, most people take vitamin D3. It seems to work faster in raising the blood levels of D. My doctor had me take D3 and it worked in a matter of a few months. I believe I was at 13 and a few months later I was over 30. I’m now at 55 and it’s holding. I’m not sure why some doctors prescribe D2. It’s worth checking into. D3 is very inexpensive and it seems to work better.

Here is some information about D2 vs. D3 from Medline.com.

“Vitamin D3 Is More Effective at Improving Vitamin D Status
Vitamin D2 and D3 are not equal when it comes to raising your vitamin D status.

Both are effectively absorbed into the bloodstream. However, the liver metabolizes them differently.

The liver metabolizes vitamin D2 into 25-hydroxyvitamin D2 and vitamin D3 into 25-hydroxyvitamin D3. These two compounds are collectively known as calcifediol.

Calcifediol is the main circulating form of vitamin D, and its blood levels reflect your body’s stores of this nutrient.

For this reason, your health care provider can estimate your vitamin D status by measuring your levels of calcifediol.

However, vitamin D2 seems to yield less calcifediol than an equal amount of vitamin D3.

Most studies show that vitamin D3 is more effective than vitamin D2 at raising blood levels of calcifediol.

For example, one study in 32 older women found that a single dose of vitamin D3 was nearly twice as effective as vitamin D2 at raising calcifediol levels.

If you are taking vitamin D supplements, consider choosing vitamin D3.

SUMMARY
Vitamin D3 appears to be better than D2 at improving vitamin D status.”

So you might want to check this out.

Sherrine
Posted 3/10/2020 2:58 PM (GMT 0)
Mana, the only thing I have to add is I went to MayoClinic.com & typed in the search box "juvenile primary fibromyalgia" & found an excellent read on this. When you get the time check it out. So many of your daughter's symptoms are listed.

It's always terrible for a parent when our kids have medical issues.
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