Help Needed

debbiR

Veteran Member

Joined : Feb 2005

Posts : 730

Posted 10/25/2009 2:34 AM (GMT -5)

Hello! My name is Deb and I usually post on the breast cancer forum. But I need some help from you all. I have a 15 yo granddaughter that we have been trying to get a diagnosis for almost a year. It all started last Dec when she had her tonsills and adnoids removed. The ENT had great difficulty getting her bleeding to stop and ran some tests. As a result, we started at the U of Mo pediatric oncologist to rule out any bleeding disorders. Most tests were negative but there were some that indicated that there was an autoimmune disease. So the next appt was w/ what we were told was a pediatric rheum. Then to every other "ologist" that there is. The drs finally ruled that she had lupus. Told us that she should NOT be active..no sun...lots of rest,etc. We didn't feel comfortable w/ some of these specialists and made an appt w/ a pediatric rheum. at Cardinal Glennon hosp in St. Louis. After 3 mos of testing, this specialist told us that she had fibromyalgia and everything that we had been told she was NOT to do she needed to do...exercise, sun, etc. I need to tell you that she basically missed the entire last semester of school. She would go 2 days and then be so tired and sick that she would miss 3 days. Well,now we are beginning to wonder if this diagnosis is correct. She has many of the signs of lupus. We have talked to numerous people and they have told us that both of these diseases are very difficult to diagnosis.

We have to do something to help her. She is beginning to have severe muscle pain again as well as severe headaches. Rashes on her skin. Depressed. The only med that seems to help relieve the pain is vicodin and yet we can't get a physician to prescribe it for her. So I share my prescription w/ her.

There are no specialists in our area. We don't care if we have to travel. WE just need some advice and help.

Sherrine

Forum Moderator

Joined : Apr 2005

Posts : 18470

Posted 10/25/2009 4:24 PM (GMT -5)

Hi, Debbi, and welcome! It is so hard when our children are sick. I'm glad your family is being this thorough about this. Fibromyalgia has many of the same symptoms as other illnesses and doctors need to rule out the other illnesses before fibro is diagnosed. Also, you can have several of these illnesses at the same time. Your granddaughter could have fibromyalgia and lupus. We do have several members with both.

Be sure to check out the Fibro 101 thread...the first thread on the forum. There are links to good information about fibro and you can learn a lot there. Especially check out the link called What else could it be. You will see why it's difficult to diagnose these illnesses. Many are similar.

Exercise is good for both lupus and fibromyalgia. Here is a link from the Lupus Foundation of America that states that. But, it does look like she should watch how much exposure to sunlight she should get. Here is the link.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2253&zoneid=527

In the Fibro 101 thread you will find some good stretching exercises that really do help with pain. Also, gentle exercises are good, too. I walk and swim as my exercise. Many times I will hurt but, as soon as I start moving and exercising, the pain will lessen. If you sit or lay too much with fibro, you will be stiff as a board. That's why we are so stiff upon waking up in the morning...at least most of us are.

I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 to help with pain and fatigue. Many with fibro are deficient in these vitamins and nutrients. There are links about them in the Fibro 101 thread and it also shows how they work in the body. Since your granddaughter needs to stay out of a lot of sunlight, she probably is deficient in Vitamin D3. A simple blood test can tell you.

I hope gentle exercises help your granddaughter. I know they help me a lot. When I started walking, I could only go about four houses down and had to come back. Now, I start my day by walking my dog a least a mile before breakfast. Some days I don't feel like doing it but I always feel much better by the time I get back home. Also, she should learn to pace herself. She can still do much of what she did before fibro but she can't do it in the same time frame.

Perhaps your granddaughter would like to come on this forum and ask questions and we could help her out. We have had teenagers in the past that ended up doing quite nicely once they found what meds helped them control the pain and we always have helpful hints.

Lastly, tell your granddaughter to keep a positive attitude towards life. It's not fair what life has dished out to her...especially at this young age....but looking forward to each new day with hope and anticipation sure beats worrying and being miserable and thinking about illness all of the time. With help with her medications and learning how to work around these illnesses, she will have a full and enjoyable life in spite of her health. I know I have! Please let us know how things go for her. We really do care.

Sherrine

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