astearns

Hi TCP, thank you so much for all the info and I am so sorry to hear that you have been experiencing this nerve pain for so long. You said you don't have stretchy skin, but do you have the hypermobility? Have you seen great improvements with the dietary changes as far and the pain goes or is this more for prevention of further nerve damage? I hadn't heard anything about gluten damaging nerves, I will have to look more into that. Thank again for the info, I am anxious to do more testing to determine the source so we can either prevent any further damage or find a way to manage the pain.

Thank you so much looneymom for taking the time to message. Your post was very helpful! She has been checked for vitamin D and iron and they were fine. I had read some about Chronic Regional Pain Syndrome and it made me smile to hear that there was a treatment for your son and he is able to me touched without feeling pain and gives me hope for my daughter. I just found out we are going further with testing to determine the source and type of nerve pain that she is experiencing so that makes me happy. Thank you again for your input and I hope you son continues to improve as well!

Thank you ANCY

Thank you Corina and Katie for your input, It is so valuable to hear from others who are going through the same thing and understand that it is a big deal. I will look into getting her into see a rheumatologist. I am familiar with EDS and had considered it but she doesn't seem to fit the criteria or have the symptoms of hypermobility, stretchy skin, etc. but I have read that there are several different types of EDS though, so maybe it is something to look into. I am optimistic based off of statistics that she will hopefully eventually outgrow this but feel terrible for her that she is going through this at such a young age and in a sense she is missing out on being a kid. Thank you again.

Hello, I am new here and this is my first time ever posting on a forum so please excuse me if I make some mistakes. My daughter is 10 years old and was diagnosed with dysautonomia this summer. She has had a few symptoms for a few years (lack of appetitte and intollerence to heat and inability to regulate body temperature) but it wasn't until at the very beging of summer when she just wasn't quite getting over a virus that the symptoms all came in full force. She was very sick this summer but we were lucky to get a diagnosis after seeing a pediatric neurologist at Childrens. I feel that the diagnosis is correct and all the symptoms seem to fit perfectly but the thing that is concerning me the most at this point is that she is having what I would describe as nerve pain constantly. When it first starting happening, she would say that her feet were numb (kids sometimes have a hard time describing their pain) but after asking more questions I figured out that it is actully very painful and not numb at all. The pain came on gradually but at this point she constantly has pain in her feet and all they way up her shins. At the elbow joint and radiating around it is also very painful and achy and when I touch or rub her upper arm (very gently), she winces because it is painful to her. She wakes up with this pain and has it constantly but if she is on her feet a lot, climbs stairs, is at all active, the pain will radiate up her legs. She has learned to tolerate it when it is at her feet and shins but if it gets to her knees or any higher she is in a lot of pain. We have only seen the neurologist twice, once when she was diagnosed and again a little over a week ago. When I brought this up at her apt with my concerns that maybe there was an underlying condition the neurologist didn't seemed concerned and thought this just goes along with the dysautonomia diagnosis and symptoms. I have read and researched tons since her initial diagnosis and while I do see a little on nerve pain, it doesn't seem very prevalent and as a mother I just want to make sure there isn't permanent nerve damage happening that we could possible prevent. Although her neurologist said we could possibly do a NCS/EMG, she really just feels that if she drinks enough water and consumes enough salt she will be just fine and symptom free. I find this frustrating because we have been very diligent with the water and salt and it hasn't seemed to help but she has only gotten worse. If water and salt was all it took, then why would there be so many suffering? I did push for blood work at this appointment because it had yet to be done. She did a CBC, CMP, B12, and thyroid panel. All came back normal other than her creatinine level being a little high. I thought we were testing her glucose to rule out diabetes but then saw when we got the test results back that the numbers were based on a fasting sample and my daughter hadn't fasted the night before. I would love any input or opinions on the nerve pain. Are there others who have similar nerve pain without an underlying condition? Should I push for another CMP with fasting this time or is a normal result without fasting sufficient to rule out possible diabetes? Any opinions on the NCS/EMP? Thank you to all that have taken the time to read this and to those who respond, it is really appreciated.