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16yo wiith FM. Need advice/direction/personal experience/anything!

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Posted 1/12/2009 4:04 AM (GMT 0)
Hi, my name is Kayla. I'm 16 years old. I was diagnosed with a child's form of fibromyaglia called Amplified Pain Syndrome. I was diagnosed in October. In November, I was diagnosed with PlanatarsFasciitis. So if it's not a lot of pain from FM already, it's really hard to walk with PF. Last year (January 2008) I got Epstein Barr virus which shortly after caused mono and gave me a constant headache (24/7). So now, my entire body hurts, my foot especially, and my head hurts. I go to PT twice a week and fitness 3 times a week. The pain feels like strikes of pain, being electricuted, throbbing, crushing, smashing, beating, like someone slaps your really really bad sunburn. (anyone have any of these kinds of pain)

 

I am being homeschooled for the quarter. But I am going back to school next week because that's when the new quarter starts. So if things weren't bad enough, I get to go to school where there is a lot of light and noise (bad for my headache), read (hurts the back of my eyes/head), write (very difficult to do with the pain in my hand. I've told me mom and physical therapists and they said that I just hav to get through it. But the thing is, I can't physically write for a long time. My hand starts twitching and throbs and I have strikes of pain), and walk to my classes (really hard to do). I am excited to see my friends but getting around is going to be extremely difficult.

 

I don't like showing people I'm in pain. I hate people saying "aww" and "oh I'm so sorry, I hope I didn't hurt you". I'm already skinny and people think I'm fragile. I don't want people to put me in a bubble!

 

So, I'm hating my life but I like to laugh it off because I like to say, "If I don't laugh about it, I'll cry about it!" People are surprised by my sense of humor by it all. Today, my mom talked to my favorite priest about talking to me. Because I miss his sermons which are my favorite b/c it hurts too much to get out of bed. He's going to give me anointing of the sick and talk to me about everything. I think this will help because he is my favorite priest. Do you think it will help?

 

So, I know this is super long but I want you to know my whole story! I guess I want to know if you have any advice, direction, personal experience, or anything! Thanks =)

Posted 1/12/2009 6:41 AM (GMT 0)

Hi Kayla,

I am so sorry you are going thru so much pain. If you are still feeling so bad is there a way you could be homeschooled next quarter too? Sometimes it helps me to get out and around other people. It just makes me feel a bit better. Maybe once you get going you might feel better too.

It is good that you can still have a sense of humor thru all of this. It shows what a strong person you really are. If you do go back to school, you'll just have to tell your friends that feel sorry for you that they don't need to. Tell them that you don't feel sorry for yourself so they shouldn't either.

I have had the pain before, but I never had to worry about school or work. I hope you are feeling better by the time you go to school and if not then I hope you are able to stay home. Good luck and I hope you start feeling better!

Hugs!!!   Margie

P.S. Keep up with the humor, great attitude, & strength and you will get thru this!

Posted 1/12/2009 12:37 PM (GMT 0)

Hi Kayla, you dont mention if on any medication, my pain is like elelctrical, like being plugged into a socket and having sparks continually all over.  I couldnt manage without medication, and wether your 26 or 43, my age you need help in that area.  It doesnt sound as if you will be able to manage school though I hope you are able and things improve for you.  Please keep in touch with the foroum, id like to know how you do.   sue2z :-) :-)

Posted 1/12/2009 5:02 PM (GMT 0)
Hi Kayla,
The pain you describe is definetly what I feel at times. Sore to the touch and you don't want anybody giving you a big hug!!! I know plantars facsitis is a huge problem too. Like Sue asked, are you on any meds right now? I would say if you can take OTC meds and it helps then start there. But, many people with this disorder need to be on something prescribed by the doctor.

What sort of PT are you doing? Although it sounds great some therapy's actually make you feel worse. I was going to therapy 3 times a week, which consisted of being adjusted by a chiropractor and massage. After the massages I would feel like I had the flu. Which is normal at first. But for me it lasted 3 months. So, certain types like deep tissue, is not helpful at all.
And I think the connection you have with your priest is fabulous. Take the blessing he gives you. And be strong in your faith. I know at times I have asked the question"why me". And the answer I get is because I need to share my experience to help other's. Your faith will carry you far. Remember, whatever you feel you cannot handle, just give it over to Him.

I can tell you are a person that cares for others first, but be kind to yourself as well. If you need to do home schooling for another quarter then do it. It does not matter if people are wondering what happened to you. If they are true friends then they will ask you themselves and support you.

I hope you will stay on this forum and ask lots of questions. It does help to hear from people that understand you and your pain.
Best Wishes Kayla,
Kathy
Posted 1/12/2009 7:08 PM (GMT 0)
Thank you everyone for your advice. I am on medications. I'm on 5mgs of Elavil one a day (helps get me to sleep and is an antidepressant) and I'm on 100Lyricamg 3 times a day. I dont fell it helping but a guy in our family who is a doctor said that a lot of people say they don't realize how much it helps until their off of it.

Another thing, my primary doctor wants me to have a muscle biopsy. I am strongly against it because I'm tired of having painful tests done and having no help or result or anything. I feel like my mom and doctor have already decided I'm having it and I know they just want to do every possible tihng to help but I am really against it and it's my body. can't i refuse? I know this may sound bratty and selfish but I really don't think it's a good idea! any suggestions?
Posted 1/12/2009 7:41 PM (GMT 0)
Hi, Kayla, and welcome!  I'm glad you found us.  We do have several teenagers on this forum.

 

I HAD plantar faciitis but started wearing Birkenstock shoes and it went away.  That was 14 years ago.  I thought Birkenstocks were the ugliest shoes I had ever laid eyes on but I was having so much pain trying to walk that I was willing to try anything!  It took me about a month to get used to the shoes but now they are very comfortable and I have 22 pairs of them!  LOL  It might be worth a try.  My doctor was talking about possible surgery for it.  The shoes fixed it for me.  Plus, I met a new friend that had plantar's and I told her about the Birkenstock shoes.  She tried them and had the same results. 

 

You could also have something called orthotics made that you slip in the shoes you are wearing now.  They are made especially for you to give your foot support and stretch the tendons in the foot.  Just a thought.

 

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There is a lot of good info about fibromyalgia in there.  You could be having more pain because you are having trouble walking.  You need to keep moving with fibro or else you will be stiff as a board and have more pain.  There are some good stretching exercises that you do sitting down.  You will find these in the Fibro 101 thread.  That could help your pain.

 

Hot showers feel great for fibro.  You also can make a Bed Buddy that gives off moist heat.  Take a tube sock, fill it 2/3's full of raw long grained rice, and tie a knot on the end.  You can then microwave it and it gives off moist heat for quite a while.  It really helps those sore muscles.

But, get that foot problem under control.  Check out the Birkenstocks.  If you decide you want to get a pair, email me and I will give you an email address where you can get the shoes for a third of what the stores are asking for!  I order mine directly from Germany...where they are made.  There is no shipping or handling either!  But, it can take up to five weeks to get a pair. 

Anyway, I'm so glad you joined us.  You have come to a good place with great people that will help you live a full and enjoyable life with fibro.  Hope to hear more from you soon.

Sherrine 

Posted 1/13/2009 2:55 PM (GMT 0)
I'm in college and I can't write for very long either, the pain in my wrists is just too much. I got a laptop and take it around to my classes and take my notes on it. I have to get to classes early to make sure I can sit near an electrical outlet, though. Being in high school, you might need to get special permission from your teachers or the school administration to take notes on a laptop. You can ask to be seated near outlets. I also could not carry my laptop because it was too heavy, so I got a rolling backpack. I look a little silly but it's worth it to avoid the shoulder and back pain. If being in crowded hallways is a problem, you can ask to be allowed to leave classes early so you can get to the next one before everyone else is let out. Most schools will respond well to a documented medical condition. If you can get your doctor to write a letter indicating that you need these conveniences, they will most likely accomodate you.

If you can't get a laptop, most schools will arrange for another student's notes to be copied for you with an appropriate doctor's note. You can also use a recording device to record the teacher's lectures, though you may need their permission first (you do in college, but I don't think it's quite so strict in high school). This way you won't need to write as much. If you still want written notes you can type them at home from the recordings. Digital recorders will allow you to copy the sound files onto your computer so you can keep them all. You might want to start each recording with a comment on what class you are in and the date - you can say this into the microphone without most people noticing. If you do use a recorder though, you should try to sit at the front of the room.

The problem is that there is really nothing you can do that will conceal your condition from your classmates. I decided early on to answer everyone honestly and to explain my medical issues as impersonally as possible so they don't react with too much pity. If anybody jokes about how I get winded going up a single flight of stairs I smile and explain to them that it's just something I have to deal with. A sense of humor is essential in dealing with other people, and I'm glad you seem to have a healthy one.

If you can handle being visibly different, it is possible for people with a lot of self-control to hide how much pain they are really in. I understate it all the time, and I think that most people don't realize how uncomfortable I am in many situations, particularly classroom chairs. The majority of people do not treat with me pity and, as far as I can tell, don't even think of me as being sick. When I first got the rolling backpack, a couple of my friends asked why and when I said I couldn't carry a normal one they said, "Oh, right, you have fibromyalgia! Well I'm glad you found something that works for you." Because I am open with them and not embarrassed about it, they do not feel embarrassed to talk to me about it or feel awkward about it in any way. I feel very blessed to have people around me that understand.

Another option that may be available to you if going to school is just impossible is to stay home and get a tutor. If your family can afford it (I don't know how much it costs or if the district might have to supply you with it for free given your condition) you can usually get someone to essentially home-school you. They keep in touch with your teachers and give you the same assignments and keep you up-to-date with everyone else in your classes. A friend of mine did this one year because her anxiety disorder kept her from attending school most days, though I don't know how it was paid for.

I hope that something in there was able to help you. I won't tell you that it will be easy, because it will not be. But it can be considerably easier than it has to be, and I wish you the best of luck.

-Sandi
Posted 1/13/2009 3:30 PM (GMT 0)
hey, im in college too, but i had that fibro in high school ( and middle school) too. you should try to get a 504 plan. it's a plan, from the government i think, that is for people with medical conditions. it lists all of the accommodations that you need, like leaving class early, and getting the teacher's notes. and your school and school district has to give you all of the accommodations that are listed in the 504 plan.

-Aliza
Posted 1/13/2009 3:34 PM (GMT 0)
Hi Kayla,
I just wanted to comment about the muscle biopsy. Yes, you can certainly refuse the procedure, just tell your Mom you do not want it. However, I would also ask that the doctor and your Mom tell you exactly what they are trying to rule out. A muscle biopsy is not a routine test and the Dr. is probably wanting to rule something out that could be a more serious condition.
After you have all the information about how and why, then you should be given the opportunity to agree to it or not.

To Sandi, I am really impressed with your advice to Kayla. It just goes to show that there are coping methods that people use day in and day out. I am sure some folks here really appreciate you sharing your strategies to getting around the real world.

Best Wishes to you both,
Kathy
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