Dont know what to do..............

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melsmom
Regular Member


Date Joined Oct 2009
Total Posts : 21
   Posted 3/22/2010 11:51 AM (GMT -7)   
It has been quite a while since I was here. My daughter 17 yrs is having several systoms of Fibromyalgia. However other systoms are not. We have been sent to several doctors with no good relief for her. She has extreme pain in her legs and in random pains in her body. She is very sentisitve to touch. The pain in her legs have became se intense that I do not know what else to do. The doctor just placed on Savella along with pain meds. The Savella is not working yet and is causing her to be very ill. I do want to except the fibormyalgia dia. I fell there is more going on.
She recently started having breathing problems and tightness in her chest. The pains in her legs are so bad all she can do is cry. She is so tired it is getting hard to get her to school. She can sleep and sleep but will still be exhusted.  I am so scared...

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 3/22/2010 12:18 PM (GMT -7)   
I am so sorry your daughter is having all of these problems.  It is bad enough when you are an adult but kids should be out having fun. 
 
If I recall correctly, she was diagnosed with fibro, right?  If so, we might be able to help.  I'm not a doctor, but I'll give you my thoughts.  The tightness in her chest and breathing problems could be one or both of these problems.....anxiety and costochondritis.  Anxiety can cause a myriad of symptoms.  I used to have a medical book that I loved reading but then I started "taking on" the symptoms of the illnesses I was reading about!  I threw the book away.  Anxiety just makes everything worse.  I'm sure she is stressed out with what is happening to her, too.
 
I have costochondritis.  It feels like a tight band around the chest and ribs and you are sore.  Sometimes it is hard to breathe.  There is a link all about it in Fibro 101, so check it out.  It might make total sense once you read that.  My doctor has me taking ibuprofen with food for that.
 
Is your daughter doing gentle stretching exercises and gentle exercises in general?  If she is just sitting or laying, her pain will be greater and she will be stiff as a board.  I know she doesn't want to exercise because it hurts, but, if she goes slowly and does a little more each day, she should get stronger and the pain should let up some.  Walking and swimming are the exercises of choice for me.  Both are gentle but good for fibro.  Many here like yoga, too.
 
I get massages.  This helps keep the circulation flowing which, in turn, helps with the pain.  Plus, this will help with fatigue.  She needs to keep the blood oxygenated and massage and exercise helps with this.  I had a massage last week.  It has been cold here and I have not exercised as much as usual.  Consequently I was dragging.  After the massage, I had far more energy and got "back in the grove" and am feeling much better.  This might be happening to your daughter.
 
You want a good massage therapist...one who understands fibromyalgia.  Here is a link to a site where you can find a good massage therapist in your area if you are interested.  These people have to take courses every year in order to be in this organization.  I always go to people that continue their education and keep up to date on techniques.  That goes for my medical doctor, too!
 
 
Attitude plays a part in this picture, too.  A positive attitude really does help.  Taking one day at a time is good.  Fibromyalgia will wax and wane.  So, I look forward to each new day with anticipation because I could be feeling better that day. If not, I can handle one day and will look forward to the next.  I plan my life and work around fibromyalgia.
 
See if she wants to come on the forum.  That might help her, too.  We have had teens as young as 13 on here and we are definitely family friendly.  It might do her good to hear from people that are going through what she is going through...and hear it first hand.  
 
I hope she starts to feel better 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

Post Edited (Sherrine) : 3/22/2010 1:21:31 PM (GMT-6)


Irish Babe
Veteran Member


Date Joined May 2007
Total Posts : 1371
   Posted 3/22/2010 12:37 PM (GMT -7)   
Hi Melsmom,
 
I'm so sorry both you and your DD are having such a hard time right now. I think we handle our pain better than watching our 'babies' suffer.
Have you and your DD looked over Fibro 101, there is a lot of good info there. One section has a list of Fibro symptoms, I would suggest you both check it out. Many of us are way to sensitive to touch. I have not been on rx pain meds, I've tried to deal w/ this mess w/ Tylenol. Most days it is just not cutting it. I have never taken Savella, but several of our friends here are taking that med, I'm sure they will be along to give you some ideas about it. I do know some meds do not work right away, they need to be in the system awhile to be helpful.
My back and my legs are big problem areas. I just got back from a dr appt. My leg and back are so painful, they burn and go numb, and I can't feel them and yet I can. Yeah, I know, that was confusing! lol  My dr just gave me a rx for Neurontin and I am to make an appt w/ a neurologist.
You said she has been to several drs. Has she gone to the cardiologist and had her heart checked out? I have a lot of the same problems w/ SOB and tightness and pain in the chest region. I ended up going to ER and being admitted. I have anxiety problems, my heart is fine. The pains in my chest are costochondritis. I'm not saying this is what your DD has, just trying to say that there could be things going on that are not heart related.
I know your scared, Mothers' get that way when something touches our children. I hope you and your DD will come here and ask ???  and hopefully we can all help each other.
Fibro is a pain in the everything, but we will try to help you hold on.
Take a deep breath, exhale, repeat. We are all in this together.
 
God bless.  Alice.
 

merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 3/22/2010 2:06 PM (GMT -7)   
has she been tested for lyme disease? check out the lyme forum to rule that out or www.lymenet.org

you could aslo have her take a hot bath and add 2 cups epsom salt to the water that might help ease her pain.

savella made me horribly sick. I am sorry that it is not working. B12, magnesium might be a good idea to supplement with your docs approval. make sure to take supplements away from other meds. you can get b12 shots that help with the pain and fatigue. but oral supplements works too.

I cant imagine being that young an dbeing in so much pain. I also cant imagine being a mom and watching my child suffer


I wish your daughter a speedy recovery.

melissa
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 3/22/2010 3:31 PM (GMT -7)   
I'm so sorry your daughter is suffering. As a mom, I know it is hard on you.

Has her Vitamin D levels been checked? Mine were very low and that can add to the pain.
I was prescribed 50,000 IU weekly for six weeks to get my level back to normal range.
It isn't uncommon for fibromites to be deficient in Vitamin D.

My rheumy also suggested I start taking Vitamin B-12 5000 mcgs daily to help with the
fatigue.

Hope your daughter finds relief soon. sending you a gentle hug, mom.

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 3/22/2010 6:21 PM (GMT -7)   
I don't know if this will help you are not but please check her for arthritis. I've had it since I was 7 and by the time I was 25 I swore
I'd be in a wheelchair by 35...I'm 55 and still kicking but some days are still bad. I do herbals as I got so sick and tired from the
dr. meds. Severe dry mouth caused my back teeth to rot out (of course, they don't tell you that when they prescribe them).
I take Darvacet about once a week now if it gets bad and sometimes I don't even need that. I have it really bad in the legs and found
it to be like on fire and it felt like if you were touched it would fall apart. I now have it in most of my body and can control some of
it with bromelain (pineapple enzymes). I do Super Cissus RX and Bio-Sil to help rebuild the damage and replace the callogen in
the joints.

My nephew was diagonsed at 2 and my 13 year old grandaughter came down with it at 9.

I always thought my Dad was nuts when he said he had arthritis in his chest....now I don't as I have it there, too. The weirdest
place is I also have it in my ears causing me to loose hearing ranges. The jaw structure and nasal cavities moving is fun.

Exercise helps and start walking...I started running 5 miles a day and it went into remission for years but unfortunately it came
back. Please let us know how she's doing and check her sed rates to see if that is what it is. Good Luck..

Nana Monster
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