Fibromyalgia Support Group

Hi my name is Tanya. I am looking for a support group, as my daughter was recently diagnosed with FM. She is twelve years old and suffers from severe back pain, migraines, and poor sleep when the pain is too bad.

Her rheumotologist prescribed a variety of meds, exercise, physical and occupational therapy, and a pain psychologist. Our regular physician sent her to see the rheumotologist because he thought she had arthritis, but that was ruled out.

The doctor has her on cyproheptadine for prevention of the migraines, ultram for immediate pain, celebrex for I am not sure what, flexeril for relaxation, vitamin D3 for deficiency...I think that is about it. Does this sound normal for medications?

We have Tricare, as my husband is AD, but I am concerned when my daughter no longer lives with us, how is this going to effect her having insurance?

That's way too many meds in my opinion. Celebrex has had lawsuits against the makers. It is for pain, but I found it to be of no relief. She is a little young for narcotics, but the majority of people I know with fibro are on some form of them. Ultram is a mild (over the counter) pain reliever. I don't want to worry you, but the symptoms do get worse for most of us. The best thing you can do for her is treat her as normally as possible. If she says she can't do something, please listen. Her pain gage will tell her what she is able to do. Love her (bunches)...this disease needs a lot of emotional support. Explain to your entire family the toll this may take on them and have them prepared. Isolating her in any way can be fatal for her mental health. I have lived with this for 10 years. The hardest part for me is my family doesn't truly take the time to really research the symptoms of this disease. If she is tired a lot, let her rest. Chronic Fatigue Syndrome is common in fibro patients. That's about all I can think of for now. Sending out prayers for you and the strength you will need to remain her trusted and most supportive alli. God Bless PS: she may be able to get insurance through SDI or SSI. Or, based on her income when she moves out, from the state you live in.

Thank you for your reply.

She is not on any narcotics. Ultram is a narcotic-like med without the terrible side effects.

Her rheumotologists believes children have a better chance of outgrowing it if combatted with the steps I talked about.

Wish there was more of a test for this, rather than yep meets 7 our of 9 of the symptoms, this is what she has.

thank you

Sorry to hear that your little angel has to suffer this so young. You are doing all you can for her,just love her and let her tell you what she can and can't handle. Try to treat her as much like any other 12 year old as possible. Don't worry about ins for her when she no lives with you,that's a long ways off, just live for the here and now. Keeping you and yours in my prayers, feel free to PM anytime you want.

how young so sad its good it was caught earlie pain . celebrex is and anti inflamatory and is suppose to help with joint pain you said she was in pt and ot theropy? get the doctor to perscribe pool theropy, many here will agree with me that water is best hot baths heating pads, Im not sure where you live but winter will be so hard on her cold is horrible for us with fm I have to commend you for checking this site out I dont know if we have a site for young ones with this,but she will need for someone who suffers with this to talk to it is not easy and as much as you try to understand enless you have it there is no way you can,alot of us take cymbalta it is for nerve pain and also depression I agree it sounds as if she's on alot of meds she will have a life time of them (I hope not)but all these meds will eventally do some physical damage,some have success with heathy alternatives some dont.lord I just want to cry for her its bad enough being older having this,but please dont loose hope there are some studies being done.if you dont mind me asking what are her pain difficulties now when you read are post we all have all kinds. we will all try and help you through this the best we can feel free to pm me any time,you all will be in my prayers

I agree your daughter's rheumatologist prescribed too many meds to start out with for such a young lady. I'm taking Cymbalta (an antidepressant that has been found to relieve chronic nerve pain), and Lyrica, both recently approved by the FDA for fibro. I also take Temazepam to help me sleep at night. I know some fibro sufferers take muscle relaxants like Flexiril at night for sleep.

You'll discover it takes a while to find the right combo of meds and not all fibro sufferers respond the same way to certain meds. You may want to try one med at a time to see what works and what doesn't.

I'm taking Celebrex (partially for my knees, but also just for my body in general), Lyrica, Celexa (helping with my anxiety), and I have Flexeril... I don't take it at work because it makes me loopy... I think I have to start taking it at night, though, because I just hurt so much. nothing seems to help.