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Posted 4/5/2010 12:25 AM (GMT 0)
Hi everyone... I'm Amanda and turned 18 about a month ago. I've had fibro for a little less than 4 years now. And it just keeps getting worse. New symptoms just keep appearing (which I noticed they are the same as the fibro symptom list, I have all but a couple of the symptoms on the list), and they've become impossible to control. It's made it impossible to live a normal life. I can't handle the 8 hour school days so I have to be taught after school. The only other time I'm out of the house is doctor appointments. I've lost all of my friends because they believe I've gone mental, and so does everybody else at my school. So I pretty much live the life of a loner.

I've been through the woodwork as far as doctors... first with a neurologist, headache specialist, three endocrinologists, an osteopath, rheumatologist, and an ob-gyn. Each one of them has found something new that's wrong with me, minus two of the endocrinologists and the neurologist... headaches/migraines, hashimoto's, fibro, cfs, recurring back pain, raynaud's, depression, and most recently, vaginismus. My osteopath has been the most helpful doctor of them all, even if the effects of what he does only lasts a couple of days. I can't remember all of the medicines I've been on, I've been on so many. Right now I'm on savella, tramadol, allegra (for asthma I've had since I was born), levothyroxine, vitamin d, and a multivitamin.

I currently do daily yoga and have completely changed around my diet. I've cut out all of my favorite foods, nothing greasy, nothing chocolaty, nothing high glycemic, basically anything tasty I've eliminated. While that has helped me lose a couple of pounds, I've become really backed up and gotten a sensitive stomach. Now I can't eat anything that's not bland. sad I've really upped my fiber intake and take miralax to at least soften me up, but it hasn't helped. I blame being put on lyrica, I haven't been the same since I took that for a month...

Sorry my explanation is so lengthy. I haven't really been happy in a long time so I'm just venting.
Posted 4/5/2010 12:57 AM (GMT 0)
Hi Bee!

And welcome!! I'm so glad you've join us. We have quite a few younger members so I hope some of them show up soon to chat with you.

about your comments on being 'backed up'... that happens to a lot of us who take some of the medications you do. It's a side effect and often doctors don't mention it to you until you're miserable. Also a sensitive stomach is very common with fibro. In addition to the miralax, I also take 3-4 stool softeners each day. Try to get a good share of fruits each day and water also. Those can help too.

about the Lyrica...I tried it for a couple of days and I felt so awful I stopped immediately. There doesn't seem to be anyone who's in the middle of the road on that stuff...you either hate it or love it. Those who love it have found that after about 2 years it stops working. And the number who do get some results is around 63%. That's the best medicine has to offer and that's not a very high percentage.

You're amazing that you can cut out those foods that aren't really good for you. But do make sure you're getting a balance diet. Also, are you taking a multivitimin? That's another thing that might help. I have found that over the past 5 years or so that so many of the foods I used to love I absolutely can't get them down any more. They just gag me and will come back up if I try. These are good, healthful foods that I lived on for many years so now my diet it more and more limited. I have to work at getting down those things that I know I need each day.

There's just so much to learn about fibro and I'm so sorry this has hit you at such a young age. But my hope and prayers are that either in my lifetime (and I've got grandkids your age) that a cause is found for fibro and then a cure. They are getting closer and closer to the cause and feel it's a central nervous system disorder but until they pinpoint it a cure is a ways away still.

Keep in touch and always feel free to email. To email me just click the little envelope under my name over there.. <----

Hugs,
Chutzie
Posted 4/5/2010 1:13 AM (GMT 0)
Hey Chutz,
Yeah, I do take a multivitamin, I just forgot to mention it. Oops lol. I didn't really eat a balanced diet before since I survived on a lot on chocolate and pizza, now I'm doing a little better. It's hard because I'm a meat and potatoes type of person but I've at least cut out red meat and any really high carb foods. I still have more work to do... I used to be able to handle eating crap nonstop and be on sports team and have a really busy life, but not anymore. Hell, I'm eating quinoa to try and get better...
Posted 4/5/2010 2:22 AM (GMT 0)
Hi there,

I would also like to welcome you to the forum. And I too am sorry that you got fibro at such a young age. I was in my 40's when I got it. Though I may have had it longer. That was just when I got diagnosed. I noticed that I was always more tired than other people and didn't have much ambition for doing things.

You sound very intelligent for such a young age. And you seem to have a good attitude, that is so very important. You can't give up. Keep trying even if it is baby steps some days. As long as you keep moving, you will be fine.

There is an herb called "cascara sagrata" that is a natural stimulant. At one time I would take that along with the stool softeners and it really did help. IBS is a part of fibro and it really messes your system up.

I hope that you have a good night your way. Keep posting, we are all here for you.

Hugs, Karen
Posted 4/5/2010 3:13 AM (GMT 0)
Hi clumsybee,
You sure have got a lot going on. I feel for you! I have to watch it or I get backed up, too. I take Citrucel every day and usually also Miralax. (At the moment my bowels and I have a truce, but with Fibro, that can always change.) It really is too bad you're having so many problems at your age. You didn't mention what your relationship with your parent(s) is like...are they supportive? Are you going to graduate this Spring?
Posted 4/5/2010 1:00 PM (GMT 0)

Hi, Amanda, and welcome!  You have gotten some good advice but I wanted to pop in and welcome you.

You say you don't get out of the house.  You really need to start doing that.  It is important to keep moving with fibro or the pain will be worse and that, in turn, can cause more depression.  You said you did yoga and that is wonderful but try other forms of exercise...gentle exercise.  I walk and swim for my exercise.  I really feel so much better after a walk.  As I walk, I start thinking of all the things I can do, I look at all the beauty around me, and this helps clear my head.  By the time I get home, I have less pain and more energy and have a better feeling of well-being.  Give it a try!  It might really help you.  Then, you probably can start hanging out with your friends again.

When you are with your friends, it's best not to be talking about fibro a lot.  Most of them just won't understand.  But, you can still have fun with them.  Closing yourself off is not healthy.  Many times I have to force myself to get out but then I end up having a great time!  People do need people. 

I'm so glad you found us!  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon.

Sherrine

Posted 4/5/2010 2:32 PM (GMT 0)
I have an ok relationship with my parents. They believe that there's something wrong with me, but they won't let me get outside past doctors, vitamin d time, and after schooling. They say if I can't handle a whole day of school every day I can't be going out on weekends or anything. It's been that way ever since I've gotten sick and I've just had to deal with it. I live in a small town so there's not like there's much to do anyway. My friends have stopped talking to me mostly, I'm lucky to be talking to them period since they're so busy. I don't get cell phone service at my house so I can't text them regularly. They are really busy and party a lot, things I can't do. So they've cut me off basically. It's not that bad being friendless, I've been friendless most of my life anyway, so I'm used to it.

With a LOT of work I'll graduate in June. But I probably will skip graduation, or at least I want to skip it. The three dress rehearsals would kill me so I'm a zombie receiving my diploma. I've lobbied to find a swimming pool, but there isn't any really close by. They're all over 15 minute drives away, and I'm not sure I could drive myself back home afterwards. I can barely drive 15 minutes period. Should I just do it anyway and hope I don't get dizzy behind the wheel (nobody else can drive me)?
Posted 4/5/2010 3:55 PM (GMT 0)
Amanda,

It sounds like maybe your parents don't really understand what's going on with you. My husband and kids didn't either, and at first didn't particularly even put creedence in the idea of fibromyalgia, but at least I was under my own roof, so I was free to explore different avenues to relief. You are in a tough situation; but I get the feeling you have a good grasp of it and I'm sure you're doing the best you can under the circumstances. That's all you can do. Please keep coming to this forum! So many people can relate to you and each one has a slightly different take, and though we don't know you, we really do care.
Posted 4/5/2010 5:09 PM (GMT 0)
Amanda, you can walk and I don't think your parents would make you stay in the house all of the time.  It is so good to get exercise. 

 

You might go to Fibro 101...the second thread on the forum....and start reading the links.  You will learn a lot there and you could print stuff out for your parents to read, too.  That will help everyone to understand what you are dealing with.  If you start exercising around the house and your neighborhood, you might start feeling better and get more confidence.  I drive all over the place but I eat properly and I do exercise.  But you need to know for sure what you are dealing with healthwise. 

 

It doesn't sound like you have gotten any answers yet.  Were you tested for Lyme disease?  That and other illnesses have many of the same symptoms as fibro.  You need to get these things ruled out.  There is a link called What Else Could It Be in the Fibro 101 thread.  These are what the testing should help rule out before fibro is diagnosed.

 

I hope you get some answers soon.  Having a "for sure" diagnosis is like having a load taken off you.  

 

Sherrine 

Posted 4/5/2010 5:49 PM (GMT 0)
A few weeks ago I had to have ten (!) vials of blood drawn to rule out any and everything possible to guarantee that it's fibromyalgia. And they all came back clean, so fibro is the diagnosis (along with the other things I've mentioned).

I don't want to make it seem like I don't exercise, Sherrine. I just haven't gone outside much (excluding the past few days where it was 60 something out) because there isn't much to do where I live and it's just too cold. I live on a main road in a small town where there are more farms than stores. My neighbors aren't exactly close. The only thing to do is ski, but I can't do that anymore because of my Raynaud's and the fact that skiing was ridiculously exhausting when I tried it a couple years ago. At my house I do have an exercise bike that I use about twice a week, that's my cardio. I do weight training with 10 pound weights a couple times a week either before the cardio or a day opposite the cardio. Every day I do at least 10-15 minutes of yoga and I use the Wii Fit to monitor my weight and use those exercises to switch things up. I would like to swim but there's just no pool nearby. This is along with cutting out junk food.

I'm not laying in bed all day like I was a couple years ago. I just can't go out to places with moderate noise because they trigger headaches. Trips to the mall/shopping are killers. School doesn't give me any breaks for 8 hours and I simply can't handle that along with lots of homework, doctor appointments and exercise. That's why I'm taught afterschool.

Trust me, my parents won't let me go outside the house unless it's school or doctor related. Not until I can live a "normalish" life can I go to a friend's house or something. When I could go to school, I was able to go to a NFL game in November. But at this point, no school means no nothing. But since I don't have any friends now it's not really a conflict.
Posted 4/5/2010 6:34 PM (GMT 0)
Hi Amanda, I also wanted to welcome you to the land of friendly fibromites. I also have Raynauds
and have been taking Diltiazem for it. Diltiazem is a calcium channel blocker that helps with the
blood vessels from narrowing. It has really helped me.

Amanda, there are lots of wonderful people here. Come here often this forum is like family,
we truly care about eachother. I'm glad you joined!

Hugs, Robin
Posted 4/5/2010 6:42 PM (GMT 0)
Hi Robin! I was going to be put on that blood pressure medicine until they saw that my blood pressure was really low. They said the side effects would be worse than the benefits. So I'm just wearing socks 24-7 until it gets consistently warm out. But next winter I'm going to need to find a better solution to dealing with Raynaud's because half of the time my feet were purple. shocked In a few years I want to move somewhere a lot warmer and dryer so this isn't as much of an issue.
Posted 4/5/2010 6:54 PM (GMT 0)
A warmer climate does help with the Raynauds. I used to live in Wisconsin and now

I'm in Arkansas. Besides the weather, stress can also aggravate my Raynauds. I do

what I can to try to keep the stress level down by doing deep breathing exercises and

meditation. I hope you will be able to get it under control. My hands will still turn purple

in 90 degree heat if I get really stressed. Raynauds is crazy.

Hugs, robin

Posted 4/5/2010 8:00 PM (GMT 0)
Amanda, I'm glad to hear that you are exercising and also that they are ruling out everything.  Still, print some stuff out for your parents.  It almost sounds like they might be thinking that you are trying to get out of going to school so that's why you can't do extracurricular things, too. 

 

I take malic acid/magnesium supplements and they have helped me a lot with pain and fatigue.  They are pretty inexpensive.  I get mine on line.  There is a link about them in Fibro 101.  You might want to try this, if your doctor okays it.  This might help you enough to be able to get back to school with your friends and have a more normal kind of teenage life.  I sure hope you can...especially since this is your senior year!

 

Sherrine

Posted 4/6/2010 12:31 AM (GMT 0)
Oh good! I thought I was crazy when it was 80 out and I was roasting with freezing hands tongue I live in upstate NY where the four seasons are very prominent. But hey, at least I get fresh maple syrup for pancakes!

I've heard a lot of people say that magnesium has helped them. I've had my magnesium checked before, and the levels were in the high range of normal, so I was advised against taking it.
Posted 4/6/2010 12:52 AM (GMT 0)
Amanda, I was born in upstate New York...Watertown.  Spent my summers in the Thousand Islands.  It's beautiful up there.

 

Sherrine

Posted 4/6/2010 1:06 AM (GMT 0)
I've camped up in the Watertown before, but I forget the name of the place. I just remember riding 81 until the last exit to get there lol. I live about 30 minutes south of Syracuse, in the Cortland area (the NY Jets are having training camp again at SUNY Cortland, it's probably the best thing to happen to the area... ever.) It's wonderful here in the summer but a nightmare when it gets below 55. Especially since the only thing around my area is golf courses. There's four of them within 20 miles of my house.
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