13 yr old daughter with fibromyalgia . . .?

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lady_express_44
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/24/2009 12:00 PM (GMT -7)   

Hi everyone.

 

I am a mom with two daughters, and I have been dx with Multiple Sclerosis for many yrs now.  The reason I am on this forum today though is because of my 13 yr old daughter.

 

I'm wondering if anyone has any experience with fb and children, and/or even to get some experience/advice on fb symptoms.  I'm sorry, but this is going to be a bit of a long story ...

 

My daughter started to get numbness in her jaw area about 5 or 6 weeks ago.  I "assumed" it was just a passing phase, and maybe related to hormones or a "painless" hormonal headache . . . something along that line.  It went away after a few days.

 

Two weeks later, the numbness started up again, and it spread.  She had it in her jaw area again, her chest, the under side of her upper arms, and on one hand.  At the time she felt very nauseous, and was sore (mentioned her neck), so I took her into the ER to make sure it wasn't mennigitis or something.  They checked her over, and she had no fever or signs of a virus, so they sent us home.  They said if it gets worse, to come back.

 

As the weekend went on, her skin became hyper-sensitive to touch, she got vertigo really bad when she laid down, and she really felt awful.  I happened to have a neurologist appointment myself on Monday, so I talked to her about it.  She told me to get her in to the Children's Hospital in the city right away, to be seen by a pediatrian neurologist.

 

We spent most of the day in the hospital, with every doctor imaginable poking and prodding.  In the end, the pediatrician neurologist said, “well, it would be unusual for a child of this age to have MS, but I don’t really have an answer for you”.  Because most of her symptoms were “sensory”, there were no objective neurological findings, but the doctor said she believed my daughter was experiencing what she said she was.  Basically that is what happened to me in the beginning too ... even though I was paralyzed when they tested me.

 

The neurologist said “is she under any stress?”, to which I responded “what 13 yr old girl isn’t?”.  She is just a really happy kid though, with no big changes going on in her life (she went through puberty at 11 yrs, so that’s not an issue), so I didn’t think it was a psychological coping mechanism.  On the other hand, I am someone who believes in having a “safe place to vent”, so I have arranged counseling for her anyway ...

 

To shorten the story a little . . . it’s been three weeks now, and she is not getting better.  There has been increased numbness, vertigo, nausea, etc. to the point where she can hardly function any more.  They are going to do a MRI, and her GP and neurologist are doing everything to figure this out . . . but even if it is MS, that just takes TIME to show up.

 

So, last night my daughter said “mom, it hurts here”, as she pressed on either side of her collar bone.  That made me think of fb pressure points right away, and I kinda’ tried to check the other one’s (many people with fb are on the MS forums, so I was aware of this symptom for fb).  It seems maybe she has other pressure points too, but I don’t really know what I am looking for.

 

When I looked up the fb symptoms, I see nausea, dizziness, numbness (especially in the face, arms and hands), pain, skin sensitivity, etc. are ALL quite common symptoms for juvenile fb . . . so this got me wondering if maybe this is the cause, not MS.

 

Can anyone give me any advice on what to look for, your experience with this disease, whether you’ve experienced the same symptoms as her, etc.?

 

Thank you very much,

 

Scared mama, Cherie     


colabear2890
Regular Member


Date Joined Nov 2008
Total Posts : 103
   Posted 2/24/2009 12:09 PM (GMT -7)   
Hi! Welcome. maybe you can see a pediatric rheumatologist. they don't have so much experience with fibro in kids, since most fibro cases are in adults, but at least you should be able to get a diagnoses. Im 19 now, but I got and was diagnosed with fibro when I was 11.

Usually fibro is a result of something, like I got it right after I had mono, so maybe your daughter had a virus or something big happen in her life right before this happened.

i do have maybe of the symptoms that you mentioned. I don't have numbness, but I do have nausea (from reflux though), the pain, I am very sensitive to touch, like a hug or a light tap will hurt alot.

but, you should definitely go to the doctor and have a pressure point test done.

if you have any other questions, feel free to ask. ill try my best to answer them.

-Aliza
"never regret something that made you smile"


jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 2/24/2009 12:21 PM (GMT -7)   
Cherie, I am so sorry you are having all this trouble.  But I know, also, that you would take this on for your daughter if you could.  How is your MS doing?  Please stay as calm (ya right!) as you can so you can be there for your daughter as she goes through this.  It is hard to watch our children suffer with anything.
 
My daughter, Misty, is 33 now but she has had Fibro for many years.  She was finally dx'd in 2006 but she lived with it all of her life.  I took her to many Doctors but back then they didn't believe Fibro existed so she was finally at the age of 6 dx'd & I was told it was all in her head, she was dx'd as the youngest hyprochondriac they had ever seen.  I took her to therapy because I thought it may be possible because she had already had 7 of the 13 surgeries she would eventually have on her hands & arms due to a little known genetic disorder called Holt-Oram Syndrome.  As she got older she had alot of pain & was told by Dr after Dr that it was "growing pains".  We have talked alot about it & she say she finally did believe it was all in her head & that everyone had pain like this all of the time.  So, she said, she made a conscious decision to never speak of her pain again & she just pushed herself all the time. 
 
Please, listen to your daughter (it sounds as though you are & you are there for her) Let her talk about her pain & commiserate with her but also let her find ways to cope that are healthy.  Misty is doing well today & has 2 kids of her own.  She is very strong due to all that she went through but has told me that because I was there for her she coped by talking to me, living in the moment & the therapy had given her some tools to use.  Her Father is a recovering alcoholic/drug addict & she said she could have gone that route but I had also had her in Ala-Teen so she got some coping skills there.  There are many foundations & organizations that your daughter can utilize to find the skills she will need if this is Fibro or if it is another AI disease.
 
Have they checked for Lyme?  Please let me know how things are going with you two.  Misty & I are very close because of all we have been through together.  Your daughter will be ok, really she will.    My heart goes out to you both.  Many hugs, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 2/24/2009 12:41 PM (GMT -7)   
Hi, Cherie!  I'm so sorry you are going through this.  It does have to be frightening for you and for her.  The doctors you are taking her to should be running tests to rule out MS, Lyme, Lupus, etc.  Many of fibromyalgia symptoms are similar to these illnesses, too.  But, she very well could have fibromyalgia.
 
We have teenagers on this forum.  We have one moderator that says she has had fibromyalgia all of her life.  She, too, was told it was "growing pains".  But, you are doing everything right and getting all the testing run.  When everything comes back negative and a tender point exam is done, usually the diagnosis of fibromyalgia is given.
 
Check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia including symptoms and also a link called What Else Could It Be?  The information in the Fibro 101 thread could help you.
 
Meanwhile, I'm glad you have found us.  We do allow kids from 13 years on up to post on this forum.  We are "kid friendly" too!  smilewinkgrin If you or your daughter have some questions we are happy to help you out with them.  The teenagers seem to help one another out too and that is really nice. 
 
I hope you get some answers soon.  Please let us know what you find out.  We really do care.  I hope to hear more from you soon.
 
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


pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 2/24/2009 12:41 PM (GMT -7)   

Hi Cherie - Welcome to the Forum.  I hope we can help you find some answers.

I've heard that Fibro can kick in "during your childbaring years" so that would mean just about anytime after puberty.  So, perhaps 13 isn't as uncommon as one might think.  We have several members on the Forum that are quite young (High School Age).  If you have a rheumetologist, why don't you could bring her there for a diagnosis, Rheumys are pretty up to speed on Fibro.  I would also recommend that you get her tested more than once for Lyme Disease.  I've had it 4 times and the symptoms are much like FMS.  I had a lot of her symptoms when I was sick w/ Lyme.  Lyme has a nasty habit of showing false negs. so sometimes it take more than one blood test.

Please check out the second thread on the Forum called Fibo 101.  There's tons of information that's really helpful on there and maybe you'll find some answers.  

You've really got your plate full, between MS and the possibility of FMS for your daughter.  Please take care of yourself during all of this.  It sounds like you're an awesome mom and you listen well to your daughter.  I'm glad your doing all the things your doing for her and you have a good handle on the situation.

I hope for only the best results for you and your daughter.  Please keep posting and let us know how both of you are doing. 

You're in my most positive thoughts,

Warm hugs,   


Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


leemadd
Veteran Member


Date Joined Sep 2008
Total Posts : 532
   Posted 2/24/2009 2:43 PM (GMT -7)   
Just to let you know I dont know where you are at but one of the young teen girls was in an area where it was unusual to get lymes and when she finally got tested was positive. So i would insist that be done. I am not 100% impressed with the way they test for lymes and there seems to be a some misconceptions about it I tested positive 2 times and now it is coming up negative my New Dr. told me that I have never had lymes because it did not show up on blood work And that once you have it you always test positive. Another DR told me that the only place that has accurate blood test for Lymes is a lab in California and insurance usually does not pay for it. I am in PA and we are one of the highest Lyme areas. I hope she has neither lymes or Fibro and that this all goes away as fast ans as mysterios as possible. She is in good hands if she is going through childrens they usually dont mess around. positive thoughts are being sent your way.

LeeAnn

lady_express_44
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/24/2009 8:15 PM (GMT -7)   
Thank you all for your supportive advice. She stayed in bed all day till 2:30, then I took her into the doctor because of really bad vertigo still. He has put her on a rx drug (other than gravol, because it knocks her out too much), and he observed nystagmus in her eyes.

I am really tired tonight (and I still have to drive 1 1/2 hrs to pick up my other teenager tonight), but I will come back to answer/respond more tomorrow.

Thanks again!!!
Cherie

kellywashere
New Member


Date Joined Jan 2009
Total Posts : 14
   Posted 2/24/2009 8:25 PM (GMT -7)   
I'm 15, so if you have any questions about dealing with fibro at a young age you can always ask me anything.

I hope your daughter feels better. Fibro is so hard when you're a teenager. I agree with everyone who said you should take her to a pediatric rheumatologist.

I think you definitely did the right thing with sending her to therapy even though she seems happy all the time. My mom said the same thing, and she was definitely wrong. She's lucky to have a mother like you to support her. :)
Fifteen years old. Fibromyalgia, chronic myofascial pain, chronic headaches, chronic migraines, costochondritis, TMJ, patella femoral syndrome, insomnia, depression, anxiety.


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 2/24/2009 8:42 PM (GMT -7)   
Awe Cherie, I'd like to offer up some comfort and lots and lots of
Soft {{{{{{{{{HUGZ}}}}}}}} this is a great place for support!
invest in a good heating pad as that helps with the fibro pain, make sure it
has an auto turn off and monitor her when it's on in case she should fall asleep then
you can turn it off, as they do get very hot in high setting...
Again, lots of soft {{{{HUGZ}}}}
Keep us posted when you can...We'll always be here........
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********


Baloo
Regular Member


Date Joined Feb 2009
Total Posts : 210
   Posted 2/24/2009 9:00 PM (GMT -7)   
I am new to this site but not to fibro. my daughter is 15 and going thru alot of the things that have been mentioned on this page. I have taken her to the doctors because she keeps fainting and pain. The tell me she is fine and stop putting my disability on her. I am so angry about that, my doctor has told me i am an inspiration to her and her office living with this fibro and chronic pain. I never would want this on my daughter at all. Like many of you as a mother it is very hard to see your child go thru pain. Tomorrow is another appt. and with some of these comments it has given me a new way to speak to her doctor. Thank you Cherie for sharing your story.

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 2/24/2009 11:40 PM (GMT -7)   
Hi Cheri and welcome to our family!

I too am very sorry that you and your daughter have so many challenges in your lives and NO it's not fair. No one deserves to live with fibro pain, especially a child. Please tell her that people here on the firbo forum do care about her very much...people who don't even know her. That's just how we are. But as you've seen there are teens for her to chat with as well as adult for either of you to lean on.

Hang on (extending hand) and we'll walk this journey together. Your daughter will be OK even though it doesn't feel like it right now. Fibro isn't life threatening but that doesn't mean it's not hard to live with. With education, patience and support you and your daughter can live a wonderful life. And hopefully she will be part of the generation who will find out what is causing this misery and put a stop to it.

Keep in touch,
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 2/24/2009 11:41 PM (GMT -7)   
Baloo...

I'm copying your post and moving it to a new topic so others can meet you. Welcome and we're so glad you've found us and have already made new family friends.

hugs,
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 2/25/2009 7:32 AM (GMT -7)   
Hi Cherie and welcome. Your daughter is lucky to have a mom that won't stop til you have answers. You have already been given such great advice on here. I hope they get to the bottom of this soon cause not knowing what is wrong with one of your children is worse than knowing.
 
Baloo, has your daughter been checked for mitro valve prolapse??? The reason I ask is cause my middle son started passing out at about 14 and it was caused from mitro valve prolapse. He did out grow it but we did go through some frightening episodes for several years. He does not have fibro. Just a thought on the passing out part.
 
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


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 2/25/2009 8:38 AM (GMT -7)   

Hi Cherie and Welcome-

Lots of good advice given and it sounds like you are taking all the steps to get this figured out-

That waiting period until they can get to the bottom of things is scary and feels like time is moving as slow as it possibly can. The group will be here for you in the meantime!

GamJill

 


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  


lady_express_44
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/25/2009 8:41 PM (GMT -7)   
colabear2890 said...
Hi! Welcome. maybe you can see a pediatric rheumatologist. they don't have so much experience with fibro in kids, since most fibro cases are in adults, but at least you should be able to get a diagnoses. Im 19 now, but I got and was diagnosed with fibro when I was 11.

Usually fibro is a result of something, like I got it right after I had mono, so maybe your daughter had a virus or something big happen in her life right before this happened.

i do have maybe of the symptoms that you mentioned. I don't have numbness, but I do have nausea (from reflux though), the pain, I am very sensitive to touch, like a hug or a light tap will hurt alot.

but, you should definitely go to the doctor and have a pressure point test done.

if you have any other questions, feel free to ask. ill try my best to answer them.

-Aliza
 

Hi colabear/Aliza, and thank your for your response.

 

My daughter hasn’t really had any viruses, but she did have her Hep B series of shots that ended Mar/08.  She is actually a very healthy kid, as a rule.  This came out of no where, literally.

 

The numbness is what scared me about it potentially being MS, and of course it may be.  The numbness (and sensitive skin) is still spreading, a little more each week it seems.

 

I took her to the doc yesterday cause I couldn’t get her out of bed, and she had really bad vertigo all day.  He put her on a med, but I am going to try a naturopathic method first, as I'm really not too keen on using drugs much.  She used it last night, and it let her sleep, but she still had vertigo.  At least she wasn’t feeling so sick, but the burning was worse last night.

 

Her doc did not test her pressure points, and he was actually kinda’ cross with me for mentioning it.  He said “you know these things take time, Cherie, and let’s hope it is a LONG time”.  He said we basically just have to wait for the MRI, but of course that isn’t likely to show anything at this point anyway.  Even if it does, it is highly unlikely they will be able to dx her, especially if it is MS.

 

Thanks again, Cherie

Post Edited (lady_express_44) : 2/25/2009 8:45:30 PM (GMT-7)


lady_express_44
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/25/2009 8:44 PM (GMT -7)   
jewelrylady said...
Cherie, I am so sorry you are having all this trouble.  But I know, also, that you would take this on for your daughter if you could.  How is your MS doing?  Please stay as calm (ya right!) as you can so you can be there for your daughter as she goes through this.  It is hard to watch our children suffer with anything.
 
My daughter, Misty, is 33 now but she has had Fibro for many years.  She was finally dx'd in 2006 but she lived with it all of her life.  I took her to many Doctors but back then they didn't believe Fibro existed so she was finally at the age of 6 dx'd & I was told it was all in her head, she was dx'd as the youngest hyprochondriac they had ever seen.  I took her to therapy because I thought it may be possible because she had already had 7 of the 13 surgeries she would eventually have on her hands & arms due to a little known genetic disorder called Holt-Oram Syndrome.  As she got older she had alot of pain & was told by Dr after Dr that it was "growing pains".  We have talked alot about it & she say she finally did believe it was all in her head & that everyone had pain like this all of the time.  So, she said, she made a conscious decision to never speak of her pain again & she just pushed herself all the time. 
 
Please, listen to your daughter (it sounds as though you are & you are there for her) Let her talk about her pain & commiserate with her but also let her find ways to cope that are healthy.  Misty is doing well today & has 2 kids of her own.  She is very strong due to all that she went through but has told me that because I was there for her she coped by talking to me, living in the moment & the therapy had given her some tools to use.  Her Father is a recovering alcoholic/drug addict & she said she could have gone that route but I had also had her in Ala-Teen so she got some coping skills there.  There are many foundations & organizations that your daughter can utilize to find the skills she will need if this is Fibro or if it is another AI disease.
 
Have they checked for Lyme?  Please let me know how things are going with you two.  Misty & I are very close because of all we have been through together.  Your daughter will be ok, really she will.    My heart goes out to you both.  Many hugs, Denise

 
Hi Jewelrylady/Denise,

 

My MS is doing ok, thanks.  I've had it a long time, and have learned to pace myself . . . but that is kinda’ hard to do at the moment.  Fortunately I don’t work any more, so I can sneak in as much sleep as much as I need, as a rule.  Thanks for asking.

 

I'm sorry to hear of all your daughter has been through, and for so many years.  It sounds like you were very supportive though, and you are right that that kind of support makes a big difference in their lives.

 

Even her doctors are “believing” her at this point in time, but even if it does pan out to be MS, stress is one of the worse triggers for flares of the disease.  It just seems to make sense to find ways for her to get the best coping mechanisms, whatever the future holds.

 

No, we haven’t tested for Lyme.  I don’t think most of the Lyme tests are particularly accurate, and the only one I know of that is, is in California.  I do have a call into a friend who was originally dx with MS, then changed to Lyme, to find out the doctor he dealt with to get the referral.  Lyme is fairly uncommon, or at least unrecognized here.

 

Thank you for your support and good wishes.

 

Cherie

 


lady_express_44
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/25/2009 8:46 PM (GMT -7)   
Sherrine said...
Hi, Cherie!  I'm so sorry you are going through this.  It does have to be frightening for you and for her.  The doctors you are taking her to should be running tests to rule out MS, Lyme, Lupus, etc.  Many of fibromyalgia symptoms are similar to these illnesses, too.  But, she very well could have fibromyalgia.
 
We have teenagers on this forum.  We have one moderator that says she has had fibromyalgia all of her life.  She, too, was told it was "growing pains".  But, you are doing everything right and getting all the testing run.  When everything comes back negative and a tender point exam is done, usually the diagnosis of fibromyalgia is given.
 
Check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia including symptoms and also a link called What Else Could It Be?  The information in the Fibro 101 thread could help you.
 
Meanwhile, I'm glad you have found us.  We do allow kids from 13 years on up to post on this forum.  We are "kid friendly" too!  smilewinkgrin If you or your daughter have some questions we are happy to help you out with them.  The teenagers seem to help one another out too and that is really nice. 
 
I hope you get some answers soon.  Please let us know what you find out.  We really do care.  I hope to hear more from you soon.
 
Sherrine

Hi Sherrine, and thank you for pointing me to the link.

 

I think you are right about fb being a dx of exclusion.  That is what our doctor basically said . . . we’ll do the most obvious testing FIRST, then we will move on to the less likely causes (like fb, in this case, apparently).   I guess the first step is the drug/sexual activity/blood testing, then the MRI, and we’ll go from there.  Two down, one to go ...

 

They are confident is not any kind of virus at this point (so a lumbar puncture is not recommended), and her symptoms are apparently not fitting for a tumor either.  Those are really the only two things that would be “deadly” at this point ...

 

It can take several weeks to get a “non-emergency” MRI for free, here in Canada.  I could pay $500 to get one tomorrow, but unless things change for the worse, I think I will wait.  Most of the likely conditions/diseases aren’t going critical to get a dx for, at least not within a month or so.  Even if we found out what it was, I'm pretty sure I’d let this “flare” run its course before treating it with anything more than symptom mgmt meds.

 

Thank you for the warm welcome to your membership.

 

Cherie


lady_express_44
New Member


Date Joined Feb 2009
Total Posts : 6
   Posted 2/25/2009 8:48 PM (GMT -7)   
pattipanda said...

Hi Cherie - Welcome to the Forum.  I hope we can help you find some answers.

I've heard that Fibro can kick in "during your childbaring years" so that would mean just about anytime after puberty.  So, perhaps 13 isn't as uncommon as one might think.  We have several members on the Forum that are quite young (High School Age).  If you have a rheumetologist, why don't you could bring her there for a diagnosis, Rheumys are pretty up to speed on Fibro.  I would also recommend that you get her tested more than once for Lyme Disease.  I've had it 4 times and the symptoms are much like FMS.  I had a lot of her symptoms when I was sick w/ Lyme.  Lyme has a nasty habit of showing false negs. so sometimes it take more than one blood test.

Please check out the second thread on the Forum called Fibo 101.  There's tons of information that's really helpful on there and maybe you'll find some answers.  

You've really got your plate full, between MS and the possibility of FMS for your daughter.  Please take care of yourself during all of this.  It sounds like you're an awesome mom and you listen well to your daughter.  I'm glad your doing all the things your doing for her and you have a good handle on the situation.

I hope for only the best results for you and your daughter.  Please keep posting and let us know how both of you are doing. 

You're in my most positive thoughts,

Warm hugs,   

Hi Patti, and thank you for your ideas.

 

I've heard there is a reliable Lyme test at a company in California, called Igenex.  Have you heard of them?

 

My MS has been very, VERY bad on occasion, but mostly I am ok.  Fortunately I have healed relatively well, between some spaced apart severe attacks.  I've had it for at least 18 yrs now, but 18 + 13 = 31 . . . and that would be WAY too young for my daughter to be as disabled as I am.  I hope that is not what happens. shocked   

 

I have never been to a rheumatologist, but I guess that step might come once we rule out everything else. 

 

Thanks for taking the time to respond.

 

Cherie

JENMILLER81
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/5/2009 10:43 AM (GMT -7)   
I was diagnosed with FB at 14. I am now 27. My parents had never heard of it before so when I started experiencing the symptons, they freaked. I was diagnosed with lupus. BUt that turned out to be wrong. I went to a specialist and they found that it was FB. My skin would whelp up at the slightest touch, my joints would swell, my skin is so sensitive and mostly around my ribs and stomach, but sometimes other places. Now it's worse somedays that others, but that's about all I have to live with. I hope that helps.

TeNNiSd0C09
Veteran Member


Date Joined Jul 2007
Total Posts : 1303
   Posted 3/5/2009 11:58 AM (GMT -7)   
Wow, first, I have to comment on your willingness to help your daughter! Thats amazing, you sound like an excellent mother to me! Im 17 now, but when I was 12, thats when my problems started, and my mom did the same as you, passed it off for some time..

And then the doctors began... and have continued since then. but, my mom wasnt near as willing as you about finding out whats wrong. And I think its excellent that you are setting up counseling. I see a therapist now and I set it up all by myself, my mom didnt even know until after the first time I went, last week.

But, your willingness is great! Its almost lunch time so I cant say much, but I think the others have given great info and advice. Just keep pursing it and dont quit until you get an answer that satisfies!

Keep it up, your daughter is lucky! Take Care
Lyrica(15 months,but working on get out right now) and Paxil(about 6+- months)
Fibromyalgia, Depression, Anxiety, Panic Attacks-currently in therapy
www.myspace.com/wilson_gal22
"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."


skippy
Regular Member


Date Joined Nov 2007
Total Posts : 23
   Posted 3/7/2009 7:55 AM (GMT -7)   
i would definitely check out lyme her presenting symptom could be bell's palsy- one of the most common symptoms of lyme the tests are not all that accurate i believe canada has its own lyme support organization.... if you can't get a test or get a neg result and question it you could try an herbal remedy that is receiving a lot of positive feedback samento and cumanda drops or do cowden's protocol check out healing well's lyme section for info as an aside i have a friend with fibro whose daughter is now sick with many seemingly unconnected symptoms the worst of which is great fatigue that stops her from living her life to the fullest what's going on? b.

moonmatrix
Regular Member


Date Joined Mar 2009
Total Posts : 178
   Posted 3/7/2009 8:36 AM (GMT -7)   
My mother believes I always had the fibro. I too was told it was growing pains, a hypochondriac. Symptoms of bipolar and depression. I do not remember not being in pain, having weird rashes. Horrid knee issues. No one till now could ever find anything wrong. I hope you can find answers, and bless you for believing her. Strong moms are the best. My mother has always been my champion. W/o her support I would not be as far as I am in life.
Angeline
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