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Recently diagnosed
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minikitty posted:
Hi, I'm Katie, 15, and was recently diagnosed with fibromyalgia.I went to the doctor to see if I had RA. I have had lots of blood tests, an MRI, urine tests ect, all came out normal except High A&A and slightly high levels of protein in urine(going to do another test for that). When we were at the doctors, she said i had all the trigger points for it and a great deal of symptoms associated. She prescribed me a prescription strength anti-inflamitory, and a vitamin D supplement since I was low on that as well ( I live in Ohio and don't get much sun :c). I was told to start exercising more and getting better sleep, both of the things which I lack the most! I am here to ask if there are anything else to help me, and what type of exercising I can do that isn't so harsh?
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dollbug responded:
Hello Katie and welcome. MiMi in NC. I am so sorry that you are dealing with the wrath of the dragon, aka FM, at such an early age. I can NOT even imagine being your age and trying to deal with this illness. I am so glad to hear though that the doctor checked your Vitamin D level and that you are now taking supplements for this. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well.

I am curious as to why she prescribed you with an anti-inflammatory, did she actually tell you? Some FMers have multiple health issues and it seems like we have to figure out what it is and get to the root of the problem before we can get the relief that we need.

I hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as well. There are all kinds of *tools* that you might try that just might help you cope better. It does take a trial and error process to find the right combination though that will help you. The more you know the better you will cope. Everything requires some sort of process though to figure things out.

Doing *gentle exercises* and *stretches* is good for us FMers....gentle being the important word here. You do NOT need to push yourself. You should also learn how to pace, pace and pace even more. Another thing is drinking lots of *water* each and every day. Watching what you eat is also a good thing as well.

Getting enough sleep is a must for us as well. Lack of sleep can increase our pain levels. Taking a hot shower at night (right before bedtime) using lavender bath salts might helps your body to relax so that you can sleep better.

A heating pad is a good thing to use on your sore spots. I am one of the FMers here who has learned how to control my FM pain by taking vitamins and supplements plus doing other things as well. A foam mattress topper might also help you.

I hope this will help you some. I am sure others will stop in and provide you with some other information as well.

I hope you will post often, ask questions and let us know how things are going with you.

You should also know that whatever you decide to do, you should allow at least 6-8 weeks before deciding if it is helping you. It does take this long for our bodies to *feel* the full potential of whatever we decide to do.

Good luck.


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

 
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booch007 responded:
Katie,

First exercise with trigger points really doesn't work well. but you can get walking for overall health.

Look to the left in resources and poke on the TOOLBOX. Look and see what all do. I am a trigger point person, I would give you this guidance.....

Stretching eachday while in bed while the muscles are warm. Make this a habit for life. Hydrate with plenty of water and give your body good foods to work with, get away from junk foods for most of the time. Buy a heating pad as it increases bloodflow around the trigger points and can get them softer for self massage.

Early on, Motrin was all I used and it helps me to this day. But I evolved with this and I use trigger point injections from my neurologist. For you though a good massage and hydration before and after may help move out the congested spots that get inflamed and hurt. I use massage alot to augment the injections.

Also a book called FM and Chronic Myofascial Pain, a suvival manual by Dr. Devin Starlanyl at 19.99 on amazon is a BIBLE for me. Buy the first addition before the latest edition as the tools to massage and self help are there. If you have the $$ get the new book too as it augments the first with the latest information.

You will have more info than your physician if you do this. You can get better than where you are right now. Knowledge is a tool in itself and a positive attitude to get better is anothe key in wellness. I say for me, I am never taking my boxing gloves off.
I fight this everyday and often get it in a good place so i can be active and have a good life. This is a disease and they don't know why we get trigger points in the muscles but they are real, documented and have certain abilities to fix them.

Good luck with this. try the books you will find them awesome for help.

Nancy B
 
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ras25 responded:
Katie,

Kids your age with Fibromyalgia should be working with physical and occupational therapists who are well versed in treating juvenile amplified musculoskeletal pain syndromes (AMPS). The Children's Hospital of Philadelphia AMPS program has an absolutely outstanding inpatient program that lasts 2-3 weeks on average. Most kids your age finish their treatment program pain free. From their website: "In one study where 103 children were treated with an intense PT/OT program, 88 percent were pain-free and fully functioning after an average of five years." About 65% of their patients are fibromyalgia kids. CHOP has one of the best AMPS programs in the nation, but there are many hospitals that offer this same treatment program--Boston Children's has a great one, Portland, Kansas City, New Brunswick, Pittsburgh. It really does work very well for the vast majority of kids.

An adult fibromyalgia diagnosis is not the same as a teen diagnosis (there is even different criteria for diagnosis) and you need to see a good pediatric rheumatologist. There are often long waits to get into these programs, but they work very well in terms of getting kids into full remission and they almost always give kids back their function even if the pain doesn't get fully resolved (that's why these programs are implemented by some of the best children's hospitals in the nation). It's often a long time before people even find out about these programs--which is sad. They're not easy programs, but they are research based and have very high success rates. You should research them.

All the best to you.
 
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physicsisfun responded:
I was just recently diagnosed as well. The tips I see here are all good. I have also seen suggestions of swimming as well; this seems to be easier on the joints. I plan to do this myself as well as walk which I have been doing for years. It is helpful to keep your joints moving and not letting them get stiff. Also
have someone who you can talk to about this. I also have a friend who I can call when I have a really bad day. They help me talk through it and calm me down.


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