Ravin Posted March 27, 2014 Share Posted March 27, 2014 DD had an appointment with a pediatric rheumatologist today, in our effort to get to the bottom of her chronic pain issues. She doesn't have arthritis (no joint inflammation), and we have a diagnosis of fibromyalgia. She's 10. The up side is, we have referrals for OT and PT now. Quote Link to comment Share on other sites More sharing options...
AmyontheFarm Posted March 28, 2014 Share Posted March 28, 2014 Dr. just told us last week that dd18 most likely has fibro also. Sigh. Now she can't figure now what she should study for after high school. Quote Link to comment Share on other sites More sharing options...
Ravin Posted March 28, 2014 Author Share Posted March 28, 2014 Amy, what did she plan on studying before? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 28, 2014 Share Posted March 28, 2014 Have they been checked for hidden infections? Quote Link to comment Share on other sites More sharing options...
AmyontheFarm Posted March 28, 2014 Share Posted March 28, 2014 She wanted to be a missionary and work in agriculture. This is my kid that trains cattle for shows, empties a wagon of hay by herself, wrestles her dad and wins. In the past years she can't do any of that. She could still go as a missionary but she's being cautioned against taking some of the required vaccinations because it could cause issues. She's young, and feels like her life has exploded. Jean, any suggestions about what type of infections? Dr. say she ruled out Lyme disease, dd hasn't been bit by a tick. B12, iron, thyroid are all great numbers. Quote Link to comment Share on other sites More sharing options...
Ravin Posted March 28, 2014 Author Share Posted March 28, 2014 Ditto the question, what kind of infections? DD's pain issues go back to age 5 or 6. Her mood issues started being noticeable around the same time. Sleep issues go back even further. We don't live where there are ticks. Headaches and stomach troubles are fairly recent developments. The doctor stressed keeping her moving and active. I worry about how she's going to fare starting public school next year... She has good lab numbers as well. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 28, 2014 Share Posted March 28, 2014 I've been diagnosed with fibro for 20 years. We just recently found that I have a very resistant sinus infection (I'm on antibiotic #8) that from the amount of scar tissue is most certainly been hiding out for years. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted March 28, 2014 Share Posted March 28, 2014 Another thing that you might look into is metabolics. Specifically, perhaps, in disorders affecting mitochondrial function. My coq10 was depleted. That shouldn't happen in a healthy person, and raising my level (Tischon corporation coq10 available only from epic4health is what my son's geneticist recommends) helped me. I had sleep apnea too, likely part of this metabolic condition for me. We were recently told one son (he has a metabolic condition dx'd) and I share a newly identified gene mutation indicative of a mitochondrial metabolic condition that causes chronic pain, GI issues, and fatigue. He was also recently dx'd with sleep apnea. So was my mother who I'm nearly certain carries the mutation. A couple of studies that popped for me just now: http://www.ncbi.nlm.nih.gov/pubmed/20424583 To this respect, Coenzyme Q10 (CoQ10) deficiency, an essential electron carrier in the mitochondrial respiratory chain and a strong antioxidant, alters mitochondria function and mitochondrial respiratory complexes organization and leading to increased ROS generation. Recently have been showed CoQ10 deficiency in blood mononuclear cells in FM patients, so if the hypothesis that mitochondrial dysfunction is the origin of oxidative stress in FM patients is demonstrated, could help to understand the complex pathophysiology of this disorder and may lead to development of new therapeutic strategies for prevention and treatment of this disease. http://www.ncbi.nlm.nih.gov/pubmed/23600892 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 28, 2014 Share Posted March 28, 2014 Oh, I have sleep apnea too. Having a CPap has made a huge difference for me. (I'm still having a lot of problems due to the sinus infection that won't end and some muscle issues but they would be worse without the CPap). Quote Link to comment Share on other sites More sharing options...
Ravin Posted March 28, 2014 Author Share Posted March 28, 2014 DD had her tonsils and adenoids out in October, partly in hopes of resolving sleep issues (also in hopes that she'd have better internal middle ear drainage and fewer ear infections mm). I think we might try boosting her magnesium and vit D, and maybe a malic acid supplement. Quote Link to comment Share on other sites More sharing options...
Greta Lea Posted March 28, 2014 Share Posted March 28, 2014 DD had her tonsils and adenoids out in October, partly in hopes of resolving sleep issues (also in hopes that she'd have better internal middle ear drainage and fewer ear infections mm). I think we might try boosting her magnesium and vit D, and maybe a malic acid supplement. My dr. dxed me with Fibro after ruling out arthritis also. He'd also done blood work and my Vit. D was low. I began taking a D3 supplement (5000 IU) daily. Within a few weeks my fibro pain disappeared. Quote Link to comment Share on other sites More sharing options...
AmyontheFarm Posted March 29, 2014 Share Posted March 29, 2014 sbgrace, what dose did your dr. recommend for your son? and for yourself? Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted March 29, 2014 Share Posted March 29, 2014 I'm so sorry for your daughter. My diagnosis of arthritis at age 22 was not as "big" a diagnosis as fibro, but it felt awful at the time. It feels more awful now that I am only 41 and have joint pain all over my body and have had to give up activities I love because of the pain it causes me. It is devastating for your daughter, and my heart goes out to her. That said, has she considered being a missionary in a gentler place? Europe, as opposed to Africa? Another possibility is to work with her target population here in the US with immigrants or refugees, or to be a home missionary here such as in the inner city? That way she can have access to better medical care and would not have to deal with some of the scarier diseases/vaccines for less developed places in the world. Quote Link to comment Share on other sites More sharing options...
geodob Posted March 29, 2014 Share Posted March 29, 2014 A test for a B12 deficiency could be very helpful? As B12 plays a critical role nerve signal transmission. Where Fibromyalgia and Neuropathy are associated with a B12 deficiency. Quote Link to comment Share on other sites More sharing options...
Verity Posted June 4, 2014 Share Posted June 4, 2014 Interesting thread everyone. OP I am so sorry to hear of your daughter's dx. I haven't heard of many young people having this diagnosis but I'm guessing that it will grow. I have been dx'd with fibro for about 5 years now. My mother has had her dx for about 8 years. There is alot of research ongoing for fibro - another infection to look at is systemic yeast infection. Some people have experienced remission when following a low carb/paleo style diet along with removing specific inflammation causing fruits and vegetables such as nightshades. Definitely helps to keep moving, daily walks, yoga or such. I have read that all B vitamin levels should be reviewed and Vit D. It is interesting to note that fibro seems to be a first world disease...whether that is because of our lifestyle/food/etc... or that in the third world they don't have the financial freedom to pursue medical help for chronic pain issues. Jean, interesting about the sinus infection. I was dx'd this year with recurrent sinus infections when I was getting a MRI for neck issues. I hadn't been aware that the amount of sinus inflammation I had regularly was causing problems (especially with sleep). I am planning a surgery to remove nasal polyps this summer while school is out and have been pursuing immunotherapy for allergies (getting weekly shots of small amounts of things I am allergic too) in hopes of resolving the sinus stuff. Quote Link to comment Share on other sites More sharing options...
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