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Posted 2/21/2013 10:19 AM (GMT 0)
Hi, my name is Ashley, and I am 17 years old. I'll be 18 in 64 days.
I was recently diagnosed with Fibromyalgia in March of 2012, although, I have known I've had it since I was 11.
My mother didn't believe me, told me I was attention seeking, I wanted something to be wrong with me, etc, but my grandmother always did, because my grandmother, too has it. She also has Degenerative Arthritis in her neck and spine, and tendonitis.
My mother finally believed me the day I was diagnosed, when my Rheumatologist pressed on a Fibromyalgia point on my chin that I had no idea existed, and neither did my mother or grandmother. She saw the pain on my face, nearly cried, and when we got home, she profusely apologized. It hurt for my mother not to believe me, but now she supports and believes me.  
Along with my Fibro, I have depression, anxiety, IBS, and insomnia. My depression and insomnia are the worst.

I was on Amitriptalyne HCL 10mg, one tablet and hour before bed, but it didn't help at all, and now I am back to square one.

I just want to know how you guys cope with this? How you deal with the pain and the things that come along with it?
What medications are best? How long you've been dealing with it? confused

Being only 17 it's a lot for me to handle - it's been a lot for me to handle for years on end now.


Thank you if anyone helps me.

Post Edited (Boodle) : 2/21/2013 3:41:13 AM (GMT-7)

Posted 2/21/2013 12:39 PM (GMT 0)
((((((((((((((hugs)))))))))))))
Sorry you've got this frustrating illness. I've been diagnosed for about 7 months, but had the pains for 26 months.

Everyone is different in what helps them.
For me I get insomnia in waves. Last night I didn't get a lick of sleep because I made the mistake of drinking coffee at 6pm.
Normal nights I can go to sleep at 2am. Rough nights usually up 'til 4am.

I'm limited in what I can take due to other medicines I take and allergies.

I'm on gabapentin, tramadol, & paxil for my fibro symptoms. I also see a psychologist to help me with coping skills and depression.
Posted 2/21/2013 12:53 PM (GMT 0)
Hi Ashley,

Welcome to the fibromyalgia forum. I was diagnosed with fibro many years ago. I have learned a lot on how to help myself without the use of prescribed medications. My rheumatologist told me I'm medication sensitive because I found that when I took many of these meds prescribed for the differing syndromes of fibro, they didn't help me, many times they made me feel worse, and they gave me a lot of side effects. I'm still in continual pain and I have my tightness plus I do still get the occasional flare especially when I'm not listening to and taking care of my body. I have to deal with a lot of limitations but I always try to do my best and try to be positive at all times. Here's what I do:

Try and take optimal care of yourself through diet, daily light exercise, stretches, supplements, a good night's sleep, and try to keep your stress to a minimum.

Diet: My fibro symptoms become worse if I eat the wrong foods. I feel somewhat better when I eat the right ones and I sleep better too.

Daily light exercise: To release those feel good hormones and help relieve stress, to keep yourself limber and less tight. Exercise is good for depression issues also especially those walks outdoors.

Stretches: To help deal with the tightness.

Supplements: I take a good multivitamin, krill oil, and vitamin C.

Sleep: I would have a very difficult time sleeping if it wasn't for the sleep supplements I take.

Stress: Exercise helps with this and talking with a good friend. Coming into this forum and sharing also helps.

Due to my back and neck injury along with my fibro, I have to limit how much I do. For example how long I sit and where I sit, how long I stand, how long I walk, how much I lift, and how long I socialize.

When need be I see my chiropractor who is knowledgeable about fibro and I spend the money on a neuromuscular massage therapist.

Good luck to you.

Post Edited (almost medfree) : 2/21/2013 6:06:29 AM (GMT-7)

Posted 2/22/2013 9:15 AM (GMT 0)
Couchtater : Thank you.
I'm in the same boat with insomnia. Last night I couldn't sleep because of coffee, and tonight I couldn't sleep because I had a Rockstar energy drink at 7:30pm. You'd think I would learn. lol  nono
Just can't muster up energy when I don't have caffeine. I'm as slow as a sloth without.


As for medications, I find that everything I try loses effectiveness after a certain period of time. It's like my body just hates medication. I do take Motrin 800mg when my pain gets really bad, but even it only works for a few hours.
Before I was diagnosed I was doing a St. Johns Wort and Melationin remedy and then Melationin just stopped working for me, so that went down the drain.

It just gets SO confusing. I probably haven't tried everything that there is to help.
Just is nice to be able to talk to people that deal with the same problem.

Posted 2/22/2013 9:19 AM (GMT 0)
almost medfree:
Thank you. :)
I find it very hard to find a combination that my body will actually take to.

I'll try to start doing light stretching. It would probably be in my best interest to start doing so.

Here lately I have been trying really hard to watch what I eat. There are certain things I can't go without eating for the sheer fact that some of my levels such as my calcium(I have started taking calcium supplements though, and it seems to be helping), blood sugar, and iron(I need to start taking these supplements again) will plummet and I start to get really sick, so it gets kind of hard for me to watch what I eat.
I also do take multi-vitamins.

Do you have any tips as to what I can do for sleep? I've tried Melatonin and other natural sleep supplements but they don't seem to stay effective?

Thank you again! :)
Posted 2/22/2013 10:05 AM (GMT 0)
Boodle, you're welcome. I've been taking melatonin for several years for sleep. It doesn't work for me unless I take the supplement l-theanine with it.
Posted 2/22/2013 10:16 AM (GMT 0)
I actually just read about L- Theanine. How well does that work?
I'm thinking of either trying it or 5HTP.
Posted 2/22/2013 12:33 PM (GMT 0)
Hi Boodle,

Be careful of what you take. Here's a reputable link about 5HTP:

http://www.webmd.com/vitamins-supplements/ingredientmono-794-5-HTP.aspx?activeIngredientId=794&activeIngredientName=5-HTP

Here's the link to l-theanine:

http://www.webmd.com/vitamins-supplements/ingredientmono-1053-THEANINE.aspx?activeIngredientId=1053&activeIngredientName=THEANINE

  

Boodle, for me l-theanine seems to quiet my mind and helps me to fall asleep. If you decide to try it, let us know how it works.

Just to let you know, if I eat an inflammatory food or a product with sugar or caffiene, I have a lot of trouble sleeping even with my sleep supplements.

One more thing, with sleeping pills I couldn't take more in the middle of the night. With melatonin and l-theanine I can. 

Posted 2/22/2013 2:24 PM (GMT 0)
Hi, Ashley, and welcome! Is it just your hip and leg that hurt? I find that odd. Most of us feel like we have the flu, have back, shoulder and other pains and the pain is in all four quandrants of the body...not necessarily all at once. Right now my back, shoulders, and neck are painful for me. My arms and legs are fine. But that can change...maybe even today!

You need to find a doctor that treats fibro patients. Some doctors don't really believe that fibro is an illness. Fibromyalgia is recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization just to name a few. But there are doctors out there still in the Dark Ages when it comes to fibro. Many here see a board certified rheumatologist for fibro. Be sure to check to see if they treat fibro patients before making an appointment.

My board certified Internist took care of my fibro but last winter I started getting excessive back and hip pain and had " raw nerve" pain that ran down my legs. Just lifting my foot off the floor to walk would cause me to cry. So I saw my first rheumy. After many tests and x-rays it was determined that I had a rheumatic type illness and possible sacroiliitis along with fibro. I'm mentioning this because of your hip and leg involvement. It's worth getting checked out. Second opinions are always good.

I use ibuprofen, extra strength Tylenol, malic acid/magnesium supplements, vitamin D3 supplements, and a muscle relaxer to help me be in control of my pain. I also walk daily as a gentle form of exercise and pace myself. You will find that what works for one with fibro doesn't necessarily work for others. It's trial and error. But, do know you can have a full and enjoyable life in spite of this illness. I know because I have!

Be sure to read Fibro 101...the first thread on the forum. There are links to good information and you will learn a lot there. Good starting links for you are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. There are links about the supplements I mentiond and how they work in the body. There are also good links you could print out to help your family understand a little about fibro and that it's a real illness. One of the best links is called Doctors Respond To New York Times Article.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 2/22/2013 3:14 PM (GMT 0)
almost medfree :
Thank you!
I'll go ahead and try the L-Theanine instead, and I'll try to stay away from caffeine and sugar! :)
Posted 2/22/2013 3:20 PM (GMT 0)
Sherrine:
I actually don't have really any problems with my hip and leg.
It is in my shoulders, back, and neck that usually hurt often, and like you said, not necessarily all at the same time.
Very seldom do my legs or hips hurt. That'll be once in awhile. The lump sum of pain is usually toward my shoulders neck, but it often changes.

I'll be sure to look into new doctors. I wasn't really liking the one I had before. He didn't seem to really get what I was dealing with.

I'll read up on the Fibro 101. :)

Thank you!
Posted 2/22/2013 5:03 PM (GMT 0)
Brand new to this forum but looking forward to some uplifting readings.

I am about to turn 61 years old and have been dealing with what I was told to be fibromyalgia for many years. Finally, my doctor diagnosed me a few months ago although she still says she thinks it's depression.

For over a year and a half my husband and I took in my 92 year old Aunt because she could not live on her own and she has no other family of her own. My fibro symptoms increased considerable during that time to the point where we had to put her into assisted living as I could not "deal" with all the things she needed and her constant "wants". I was hoping that once she moved out that my symptoms would lessen, but that hasn't happened yet.

Anywho, every day is a struggle for me. I get very little sleep and the sleep I do get is not restful. I wake up feeling like I never went to sleep after struggling all night to stay asleep. I have very vivid dreams during the times I do fall asleep and that stresses me out and causes me to come to with a headache. I toss and turn all night and have severe restless leg syndrome. When I get up in the morning (which in itself is difficult), I have all I can do to move I hurt so much. Even the bottom of my feet hurt when I put them on the floor. Some days it feels like I am walking on marbles in the balls of my feet. Even my toes hurt every day. Seems like every muscle and joint in my body hurts including my face. Any place that I have had surgery is very tender and hurts worse than it did before surgery. My eyes seem to be blurry and the tinnitus in my ears and head is horrible. I swear sometimes I can't hear anything else except the mosquitoes running around inside my brain. I have trouble concentrating on anything for very long which makes it difficult for me to do the computer and book work that I have to do for our business. It seems like I have issues with remembering small things that used to be easy for me. I don't have any stamina to do that things I love to do and even those things I have to do such as housework. Most days I deal with a headache also. Thank God for a wonderful husband who understands what I'm going through and doesn't nag me about things and helps me out with stuff so I don't get overly upset with not being able to keep my house spotless like I like it.

I used to love to put on my make up and do my hair and look nice. Now it's all I can do to put on my earrings some days. I force myself to do those things that I need to do such as errands, housework, etc. We have brand new twin grandsons who I adore and a 5 year old grand daughter. I help my daughter out with the twins but run out of energy quickly and am not able to do as much as I would like to in order to help her. Most people just figure I've become lazy. Or at least that's the way I feel they look at me. I try to explain how I'm feeling and they say - maybe you need to exercise and move around more. They do not understand what I'm dealing with.

Sorry to go on so long, but I've been wanting to put down in words how I feel for a long time and am glad to have somewhere to do it. I pray that the Lyrica my doctor put me on a week ago will help but so far nothing. She tried cymbalta and that didn't work.

Would love any suggestions.
Posted 2/22/2013 7:15 PM (GMT 0)
You sound so much like me when I first was diagnosed. Once your doctor figures out what medicines work for you you will feel better. Meanwhile heat helps you in feeling some better. The pain in you feet might be planters faciitis. Rolling your foot on a frozen water bottle can help.
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