HELP FOR 17 YEAR OLD W/FIBRO

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Gencheez
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/4/2008 10:47 PM (GMT -7)   

My daughter was diagnosed w/Fibromyalgia in Jun, 2008, as much as a person can be diagnosed.  She is 17, a high school senior and an honor student w/a 4.06 GPA.  I have never met a person so determined.  I am not endorsing the Fibromyalgia and Fatigue Center just yet, just telling my story and I have some questions, so thanks everyone in advance for your time.  We have been going to the Fibromyalgia & Fatigue Center since June.  You can visit their website at www.fibroandfatigue.com.  I think they have 14 offices in the U.S.  This was the first place a doc confirmed that there was something wrong and finally made her believe it wasn't all in her head, she wasn’t depressed or that she was not really going crazy.  It's kind of expensive and they don't take insurance, but they will give you the forms to submit to insurance.  I just submitted a bunch of bills, but haven't heard anything yet.  They use natural supplements for your treatment.  My daughter is on some prescription medications as well.  They gave her some supplements on her first visit, which I think they give for common symptoms.  Before the first visit, you complete a 26 page questionnaire and depending on how many symptoms, they will take up to 80 tubes of blood.  They took 28 tubes from her.  After the blood results, at our 2nd visit, she was on about 40 pills a day, which included mostly supplements as well as prescription meds.  The blood results showed that she has viruses for multiple sclerosis, mono and shingles; MS runs in my family, so this scares me to death.  The doc said that the viruses will not be totally detoxed out of her body, but the treatment is supposed to strengthen her immune system will be able to keep those at bay.  

It also showed that her adrenal gland and thyroid were out of whack and her immune system is weakened.  She had mono in Jan, 2006 and hasn't felt well since; she's always tired and run down.  She gets sick often and takes a long time to get better.   She started her menstrual period right before she turned 11. From the first time and still today, she gets excruciating cramps. Currently takes birth control pills for the cramps, which doesn't seem as effective as when she first started taking it. She has pain in her ankles, which we were told was tendonitis. She has been dancing twice a week since she was three, so I'm not sure if that has anything to do w/that pain. She also has extreme pain in her knees when it rains, snows and is cold.  After being outside in the cold, such as cheering at a football game, the next two days she sleeps the entire days and walks like an 80 year old person, hunched over.   We have had many tests and of course, they show no reason for the pain, her knees are fine.  She had knee surgery in Oct 2006 for a torn meniscus, which they later said was not torn, after they 'went in', but some cartilage that was rubbing on bone and said they shaved it off. Occasionally, she has small bruises on her knee in different places, for no reason. In addition, she is nauseous every day when she wakes up, if wakened suddenly, such as the alarm clock waking her for school. If she can sleep in, she is fine, but if she has to get up early, she is so nauseous that it causes her to vomit once, then she is fine. This started out maybe twice a year, for no apparent reason and is now every single day. It's been controlled w/Zofran, which she takes every night before bed when she can’t sleep in the next day.  She has had every stomach test and numerous gall bladder tests, all of which were fine. They can't tell us why the nausea happens.  She also gets pains in her right side, left side, all around her torso and between her breasts.  Her neck and back have been hurting ever since a minor car accident in Sept 2007; I think this triggered the Fibromyalgia and she has had headaches ever since.  She was a passenger and someone rear-ended her and her friend.  Nothing happened to her friend, but my daughter is very ill now. The sicknesses are anywhere from flu symptoms to just having so much pain in her head and back and not being able to get up and function. The headaches sometimes last for almost a month at a time.  Medication does not alleviate.  From Sep 2007 until Feb 2008, she was sick for 6-10 days every single month with different things that the doctors said were viral, because they just don't know, you know? We went to many doctors and after many tests of everything is normal and there is nothing wrong with your daughter, I was ready to take her to the Cleveland Clinic when my mom called and told me she heard a radio ad that sounded just like my daughter.   It was for the FFC.  All of her pain comes and goes. She can't go to school many days because of one sickness or another.  In addition to birth control and the Zofran, my daughter takes Albuterol for sports induced asthma, only a handful of times per year; Protonix for acid reflux; T4 & T3 for hypothyroidism.  After she finishes this script, they will switch her to total T3.  The center explains how everything works in your body, such as how the thyroid works and about the T3 & T4.  They prescribed Valcyte to detox the viruses and Nystatin. Those are all of the prescription meds. She was on Cortisol for adrenal function and Ambien CR to regulate sleep patterns. Fibro sufferers have interrupted sleep. She stopped the Ambien because it was making her too tired all day. She was only taking a half dose and when she started taking it, felt great after 6 hours of sleep, but something changed since Sept 2008 and she is not doing well right now. Anyhow, the supplements she takes, which are 1 or 2 once or twice a day are Rest and Restore for sleep and cell repair; Gastro Health - this helped her to have more frequent bowel movements, her bowel movements are very large; Anti Viral; Fibro Calm; DHEA/Pregnenolone-For Adrenal function; Maitake D' Fraction and they just added back Proboost which is a powder that dissolves under your tongue once a day and Mitomax, which are both for your immune function. Since June, she was continually improving each month and at our visit in Sept, 2008, she was doing great. The doctor took her off mitomax & proboost & added Ambien. He increased the Cortisol. We did not make an appt in Oct because she was doing so well in Sept.  Three days after our Sept appt, she started to get sick again.  She got a bad headache and except for about 2 weeks total, she still has it today.  They thought since her Cortisol level was high that may have been why.  She is off Cortisol and still has the headache.  This week they said to stop the DHEA for a week and it’s been about 3 days and it seems that the headaches are now coming and going.  The Fibro center informed us that the treatment can take 12-18 months to get her 'regulated' and sometimes takes longer for young people.  The doctor said if we hang in there and continue the treatment, one day something inside clicks and you are better and end up only taking a multi vitamin when your treatment is done.  

 

My questions are this:  Has anyone had experience w/the FFC?  I am not giving up yet.  Does anyone else have bad headaches w/Fibro?  Does this progress?  Should I try to talk her out of going to college?  I’m afraid she’ll be stuck w/school loans that she can’t pay because she won’t be able to have a good job.  Does anyone have the nausea?  The nausea and painful knees have been around forever, but as she got each new unhealthy symptom, I have been wondering if it’s all connected?  We are very frustrated at this time, because she was doing so great in the summer and now, when she feels good, she feels better each time, but each time that she feels badly, it’s making her more and more angry.  I guess maybe she will need a therapist to help her learn to deal?

 

Any feedback would be greatly appreciated and thanks again for your time.

 

Genie

   


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 12/4/2008 11:30 PM (GMT -7)   
Hi,

I am in grad school and 54 years of age. I would suggest that your daughter determine how big a course load that she can take. She has to know her limits. Going full time works for some people but it did not work for me.

I got both of my degrees, bachelor's and master's despite having fibro, chronic fatigue and sleep apnea.

There are quite a few college students on this board. The younger ones will probably be willing to give their point of view.

Donnaeil

Gencheez
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/4/2008 11:35 PM (GMT -7)   
Thanks Donnaeil and good luck to you. That's impressive. She currently has a late start at 10:00 a.m. everyday, that's 4th period. Her classes are tough and it's hard for her to do the homework. Because she misses school often, it seems all her free time is spent doing makeup work and it's becoming more and more frustrating. I am hoping she gets regulated and learns how to cope.

colabear2890
Regular Member


Date Joined Nov 2008
Total Posts : 103
   Posted 12/5/2008 12:07 AM (GMT -7)   
Hi! i'm 18 and a freshman in college. i've had fibro since i was 11. i think that college is easier than high school, since you are able to make your own schedule and start classes as late as you want and have some days off. I'm registered with the differing abilities office in my school. you may want to look into that at colleges. mine is really good and their so helpful with any accommodations. I can't really remember everything i get, but some of the stuff are: copies of the teacher's notes, so i don't have to write, excused absences, i get extra time on tests, extra time on assignments, so not everything is due at the same time, i get to type everything, including in class tests and essays, or i get to take them home with me, to do when i'm not in so much pain. i'm not really sure what else.
if you or your daughter have any questions, feel free to ask, as i'm not sure what you want to know

good luck with everything!

-Aliza

TeNNiSd0C09
Veteran Member


Date Joined Jul 2007
Total Posts : 1303
   Posted 12/5/2008 8:12 AM (GMT -7)   
Genie, I am going to go ahead and honestly say I didnt read EVERYTHING, but I read enough. Genie, theres hope, I know, and Im going to tell you that I felt like you were discribing ME. Im the EXACT same as your daughter. 17, Senior, Fibro since I was about 12, but everything you described...it was....I dont know! I was like "oh my goodness, shes discribing ME..."

I hope maybe I can help. You think your daughter would enjoy someone to talk to about it? I am up for that, she can email me or something if she wishes, just click on my name!

I am extremely determined, and smart, I work VERY hard at school so I understand how hard it is to have this and try to live "normally."

The one thing that STRUCK me most: The nausea she feels when she doesnt get sleep or wakes up early. I havent been able to find someone who knows what this is like. I have experienced it for a few years now! Its horrible and I offen think of it when planning things. One time, I BEGGED my parents to change the time when we were leaving for a trip because I know that waking up early or not getting sleep makes me SO sick... But, I TOTALLY understand what you are talking about so... maybe that helps.

Im not sure were to even start because I just get everything you said and you were talking about me...pretty much everything.... Im at school right now so, I dont have time to say eveyrthing that I want to, Im about to go to my next class...But, I will be back later..

Also, for ALIZA: I will be going to college soon, I already have actually, but my question is how were you able to get all the accomodations? I would LOVE the not writing thing, it KILLS my hand! Extra time would be nice as I OFTEN cant remember things that I KNOW I KNOW! lol Did you have to get a doctors "note" or did you just go to your colleges' office and talk to them about your condition?? I am very curious as to the accomodations my college could offer me....thats something I will look into definetly. Im not sure if my doctor would approve it though... Im still being tossed from doctor to doctor...I will be seeing a new Pediatric Rheumy in Dec. 23 so....

Anyways, I would appreciate it Aliza....and Genie, I understand your daughter an dwhat she is going through. I am a really good listener and advice given so I would be glad to help s much as I can! I been here a year and a half so I have learned ALOT! Take Care
Lyrica and Paxil (both working quite well might I add!)
   "Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
    "Sometimes it is best to forget what you feel and remember what you deserve"
    "Im going to smile like nothing is wrong, talk like everything is perfect, act like its all a dream, and pretend its not hurting me."


SassyIsMyKitty
Regular Member


Date Joined May 2008
Total Posts : 223
   Posted 12/5/2008 9:03 AM (GMT -7)   
Gencheez,
It sounds like your daughter is going through a lot. I am 20 years old and was recently diagnosed with fibro. I had mono in the winter of 07, and it was really bad. I have had a lot of sicknesses as well, and it does take time for me to recover from them.
Before being officially diagnosed with Fibro, I had a lot of blood tests done. They tested me for everything, and they couldn't find anything wrong. And that was when I was referred to a rheumatologist. He asked me a lot of questions, went over all the tests that had been done, and then he did a "physical" where he felt me in different places on my body and asked me if they hurt. At the end of it, he looked at me and told me that I had textbook fibro.
As a mom, I know it must be scary to have your 17 year old going through all of this. One of the best things you can do for her is to be there for her whenever she needs you. Those of us with fibro need all the support we can get.
To answer your question, I do get headaches with my fibro. Sometimes they are so painful that all I can do is curl up in a dark room and try not to cry.
I think that you need to talk with your daughter about pacing herself. Tell her that she needs to not overdo things. If you haven't read the Spoon Theory yet, I suggest that you and your daughter read it. It really puts things into perspective.
I wish you both the best of luck, and if your daughter ever needs someone to talk to, just let me know and I will get you my e-mail addy. I am close to her age, and sometimes it is very helpful to know that you are not the only young person with this disease. Good luck.

~MDD, Fibromyalgia, OCD, Anxiety Disorders, IBS, TMJ, Arthritis~
 
May your heart be filled with love and joy.
May your mind be clear and true.
May your smiles be many,
And may your tears be few. 
May God wrap you in His arms
Especially when you're feeling blue.


colabear2890
Regular Member


Date Joined Nov 2008
Total Posts : 103
   Posted 12/5/2008 10:39 AM (GMT -7)   
hey. i agree with you so much TeNNiSd0C09, about talking to other people. i've just recently found other people with fibro, on the internet and that helps so much, knowing that you're not the only one going through this, especially that you're not the only one your age!!!

my accommodations, i'm not exactly sure. in high school, i was tested, i guess to prove that i can't write that much, i don't know, it doesn't make much sense, but i got approved. I think its called ETS, from college board, so i got to type the AP and SATs

for college, to find out what to do, i would contact the differing abilities office on your campus. i know i registered, but i'm not sure if i had a doctor's note. i don't think i did, but that might have been because they just transfered all of my notes from high school. i'm sure they will let you know what you need to do. they are usually very helpful people, since its their job to help people.

oh, i remembered another thing i got, i got to be on the first floor of my dorm, so i don't have to walk up and down 10 flights of steps!
also, i was given permission to have a car on campus (at my school, freshman aren't allowed cars , it's a small school), if i needed to drive to classes or go to doctor appt. I don't have one, but that's why they said they were offering it to me,

i'm not sure what size colleges you're looking at, but i go to a small state college. i find small ones are really helpful because everyone really gets to know you. i just walk into the differing abilities office, and they know exactly who I am and what problems I was having. and if you have a problem with a teacher, you can just go to the head of the department. i don't know, i just might like the small setting, but i like knowing that there are so many people there who care about what happens and are so willing to go out of their way to help.
i don't really know what its like in a big university, because i don't go to one, but it might be the same or different, i can't really say.

if you have any other questions, feel free to ask. i hope this was helpful!

-Aliza

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 12/5/2008 10:53 AM (GMT -7)   
Hi Genie and welcome. I have not researched the fibro clinics they have around the country but I did click on the address you have and it focused more on the financial part of the treatment more than on the treatment itself. I'm leery of treatments that are not covered by insurance. With that being said there are supplements and vitamins that have been proven to help fibro and malic acid/magnesium combo is one of those. I can not take it myself because of digestive issues. There are a lot of people with fibro that are low in vit D and vit B12. Hopefully, your daughter has been checked for those.
 
I'm a mother and grandmother and it must be heart wrenching to watch your daughter suffer so and feel so helpless to help her. I was not dxd til my 50s.
 
I have a lot of headaches and I think a lot of them come from the neck. There are many with fibro that have neck problems, fibro seems to like our necks and shoulders. Has she tried using moist heat like rice bags you microwave on her neck. Moist heat in any form is our friend. They are easy to make with long tube socks and uncooked rice. Some headaches I get are stress.
 
I do have nausea that seems to come and go in cycles like everything else with fibro. Sleep is essential and I know I'm not worth anything if I do not get restorative sleep.
 
It is great to know there is help at colleges Aliza for those with fibro.
 
As you can tell there are many on here around your daughter's age so I hope she will come on and talk to them or e-mail them.
 
Read the fibro 101 thread, second on first page, it contains lots of great info.
 
luv and hugs
Marlee
 
 
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


TeNNiSd0C09
Veteran Member


Date Joined Jul 2007
Total Posts : 1303
   Posted 12/5/2008 11:28 AM (GMT -7)   
Thanks Aliza. We have a small state college right here in my city and a small community college! I am planning on going to the state college because it better suites my goals and stuff. I have already been there once and taken a class...I had to walk up 4 flights of stairs...my knees almost DIED! haha...it was horrible. There wasnt an elevator because its one of the original buildings. So, I got there early, and I would prefer more time when I start college when getting from one place to another. Hopefully I will be able to set my classes up where they are one after another, that way I dont have to rush!

But, thanks, thats something that I will look into.

Genie, as I stated before, I would be glad to talk to her. I was "officially" diagnosed last November. And I have been taking Lyrica for a year now, and Paxil for anxiety and depression. But, I feel better. Physically, Im not 100%....I love sports, but I really cant do much. I dont EVER admit that, but... I always push myself farther and regret it later, but I hate to be left out because Im used to being the best player, fastest runner, etc..... But, Fibro has changed that... So, Im sure your daughter wants to continue to push herself past her limits but she has to recognize that those limits exist and she was to live with it for now and work something out. Im still not used to it after all these years, and I still cry and get angry because of it.....but...

So, Im sure I can understand how she must feel.. But, I totally understand her willingness and determination! Take Care..

And Thanks again Aliza!
Lyrica and Paxil (both working quite well might I add!)
   "Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
    "Sometimes it is best to forget what you feel and remember what you deserve"
    "Im going to smile like nothing is wrong, talk like everything is perfect, act like its all a dream, and pretend its not hurting me."


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 12/5/2008 11:47 AM (GMT -7)   
Genie, you have gotten some wonderful responses but I may have some help for you and for Tennis.  My daughter had the nausea problem.  She would be fine and then the nausea would hit her and she would vomit.  We could be eating dinner and all of a sudden she would have to run to the bathroom.  I was making sure she wasn't bulimic.  She wasn't.
 
She went to her GP and they found nothing.  She went to a gastroenterologist and he did an upper GI and other tests and told her it was all in her head!  She had lost weight...she is a tiny woman to begin with. 
 
When the gastro told her it was all in her head she came home in tears and didn't know where to turn to.  I told her that she had tried all doctors except the gynecologist so we made an appointment there.  It turned out that she has endometriosis and that was causing the nausea and vomiting!  She had an outpatient procedure and is fine now.  It may be worth it to be checked out.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Gencheez
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/5/2008 6:48 PM (GMT -7)   
Thank you all so much for the info and replies.  We did go to the rheumy and he said that he didn't think she had Fibro but that she had RND -Reflexneurodystrophy, when your nerve endings get a false reading and it gives you major pain.  I work with a woman who has RSD which is the adult version of RND and after talking to her and reading up on RND, I came to my own conclusion that she doesn't have that because if she did, the pain would not come and go. It would be worse some days, but it's always there, I think.  So I decided not to put her thru the intense physical therapy.  After reading a lot of posts on this forum, I am convinced that she definitely has Fibro, up till this point, I was still wondering myself.  I will be viewing this site often and will definitely show her what I have found.  I know others that have Fibro and will tell them about this site.  I will also keep you all posted of her hopefully progress to only needing a multi-vitamin within the next year.

TeNNiSd0C09
Veteran Member


Date Joined Jul 2007
Total Posts : 1303
   Posted 12/5/2008 9:18 PM (GMT -7)   
Wow, I am going to a Rheumy this month who thinks I have RND. It seems reasonable... I would actually think about going through the therapy because if it helped I would be very happy, if not, at least I know I tried... I dont know what is going to happen... But, I suppose I will find out! We are more alike than I thought! lol
I have to go for now though, Take Care!
Lyrica and Paxil (both working quite well might I add!)
   "Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
    "Sometimes it is best to forget what you feel and remember what you deserve"
    "Im going to smile like nothing is wrong, talk like everything is perfect, act like its all a dream, and pretend its not hurting me."


nannen
New Member


Date Joined Sep 2008
Total Posts : 16
   Posted 12/7/2008 6:12 PM (GMT -7)   
I am a 20-year old college student. I was just recently diagnosed with Fibro, but have been exhibiting symptoms for three years (since mono). I started community college in Aug 07. My college experience has not been terribly difficult. Twelve hour semesters of afternoon classes have seemed to help this, and I have made nothing but A's (just as I did in my honors classses in high school). (Though this semester I did have to cut my hours in half, as I was having a flare-up at the beginning of the semester.) I also have not had a job, which makes the experience easier. My time in college has been worth the money. However, I don't seem to have as many issues as your daughter does. I agree with what others are saying. Make sure she knows her limits. For both money/loan reasons and ability reasons, I would highly recommend looking into a community college or local college with online courses. Maybe even taking a semester break after high school graduation before beginning college.
 
Good luck!

Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 12/7/2008 7:26 PM (GMT -7)   
Hi Genie,

I noticed quite a few things that caught my attention about your daughter that just seem odd with symptoms and my own experience and I feel for you all. I hope you do not mind if I just jump in and say a few things and I am not criticizing, just speaking from what I know and have been through.

The gall bladder thing I have all the time. I know I have to get in the middle of the attack, but its been negative all the time. Found out I had a fibroid the size of a canteloupe in my gut and its been removed. Its been better. I lived on zofran but it took an MRI to pick it up.

The mono ms and shingles viruses she tested positive for are serious disorders that need to be evaluated by a neuro and rheumie. Mono and shingles are usually test for by Rheumatologists as are Fibro (not bloodwork for fibro) and point usually to autoimmune) but the ms is autoimmune based but should be doublechecked by a neuro. I am curious if your daughter had an ana, and what all blood work she also had, double-stranded dna, anti dna, ro-ssa,rossb, etc, and what those all were.

If your daughter has had migraines since her period and is also on birth control, that with the extra hormones points to extra estrogen which could be causing more problems with the viruses she tested positive for if she is carrrying auto immune based problems. Her knees hurting, tired and sleeping for days, ankles, hurting, nausea, etc, all things I would take her to a rheumatologist for and definitely a neuro for a CT and check.

Cleveland clinic is amazing. I would definitely get her thoroughly checked out. I am not saying the fibro place you are using is bad, but something is being missed, and from my experience with lupus etc, it could be serious if not treated but if it is treated she could start to feel so much better.

leta

yeah
sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, topamax 150mg,

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