16 year old in constant pain?
My 16 year old daughter is suffering with severe pain, and we can get no answers. For about a year and a half, she hurts almost all of the time. The pain is in her neck, back, elbows, hands, hips, knees, and ankles. It is so bad that she needs help getting out of bed some mornings. Her left leg has started going numb, she has no warning, and she falls. She also gets horrible headaches, and her eyeballs twitch back and forth once in a while. Today a new symptom arose, tremors in her left hand & arm. We have had her to so many doctors, and nobody seems to be able to help, or give us any answers. We just got into a Neurologist yesterday, and all they did was see if she could walk heal to toe, and could touch her finger to her nose. No tests! Then the tremors started today. She tries to stay active, she's a Varsity Cheerleader, and keeps in shape, but it's really starting to take a toll on her body. She's becoming depressed, and she is so tired all the time anyway that it's so hard for her to keep going. Any suggestions would be greatly appreciated. Has anyone else dealt with anything like this? We are so worried, and don't know where to turn. I do want to add that we can't find a Rheumatologist that will see her because of her age. Her appointment with the Neurologist wasn't suppose to be until Oct., but we got in on a cancellation. She does suffer chest pains as well, and we have been told that she has a very slight Mitral Valve, and Tri-Cuspid Valve prolapse. She cracks her whole body constantly, and I've told her it isn't good for her, but she says if she doesn't, it hurts so much worse. We've had a CT Scan, but they said it was clear. Another issue is a small, about the size of a 50 cent piece, nodule on her head behind the top of her ear that we are scheduled to see a surgeon about in two weeks. We have heard the Fibromyalgia, and Rheumatoid Arthritis guesses, but no definite anything. They just keep dismissing us. I have had people mention Lyme Disease as well, but I just don't know at this point what to think. I'm tired, I have 3 other children, so I can't imagine what she feels like.
Public Comments
1. I'm pretty sure I saw something like this on Mystery Diagnosis. I can't remember what it was but it was some kind of disease and none of the doctors could figure out what it was except for one. I would look up her symptoms on Google or something and maybe look at the show's website.2. I'm so sorry your daughter is going through this. I know what it's like though, and I greatly empathize.
I went through something similar 11 years ago. I'm not as sick as I used to be now but still have chronic fatigue and fibromyalgia like symptoms. I know how it is going from doctor to doctor and being let down. A lot of what you describe, sounds very much like what I went through. It's hard not to get depressed when you feel terrible and doctors cannot figure out what is wrong. Please make sure the doctors don't intimidate you and put her on anti-depressants. They did that to me and it nearly killed me. SSRI's are horrible drugs and they just destroy the body and brain.
You said she's had a ct scan. Of what? Has her brain been looked at? If not I suggest you change the neurologist and demand an MRI of her head as soon as possible to rule out any tumors, M.S., Parkingson or similar diseases. An Eeg may be helpful to check for epilepsy.
Checking for Lyme is a good idea also doing a serious study to check for mercury poisoning (or other heavy metals) or chemical sensitivities is a smart thing to do as well. It could also be something more simple as Celiac Disease (allergic reaction to wheat protein) or a thyroid condition.
I know a great clinic in Dallas that does all sorts of testing for environmental illnesses if you are interested.
With me almost all of my tests came out normal (I have a slight mitral valve prolapse too) I learned to do my own research and find integrative medical, holistic, traditional chinese medicine docs and a good nutritionist. It can get very expensive. You have to find the right people but along the way you may find many who cannot help. I was diagnosed with fibromyalgia but I know I am sensitive to chemicals and medications. New carpeting is one of the things that makes me very ill.
You need to demand from your doctors to do the right testing, do your own research and be your daughters champion. Doctors think they are gods but they make a lot of mistakes and with health care being as bad as it is now, they skip over a lot of things. You need to find a compassionate doctor who wants to find out what is wrong.
I wish you all the best but mostly an easy to fix diagnosis for your daughter. Let me know if I can be of any help. Btw, her symptoms don't really sound like fibromyalgia unless it's mixed in with something else like a sensitivity to something.
3. problems from diabetes? Avoid sugary food, soda and fruit juice.
Get tested.
4. This looks like fibromyalgia. Here comes the list of doctors who know how to heal fibromyalgia and the clinical cases they have, you may want to contact them to get their feedback.
http://famousdoctor.org/fibromyalgia.html
The hand tremor seems like linked to the stress associated with elevated challenges from fibromyalgia.
Those doctors most probably will suggest your daughter to take LC balancer from Wei Laboratories, Inc for Fibromyalgia. Usually 6 weeks treatment will eliminate the symptoms of fibromyalgia. For the hand tremor part, they may add Brown Formula (Brown Juice) in addition to LC balancer.
5. i've had similar experiences with idiot docs--and they whine about their malpractice rates
she needs an MRI
look up lyme literate MD
chiari malformation
MS is a minimal possibility
famous doc is a quack--there is nothing that says this really sounds like FMS--its a small possibility--but it is much more likely something else
6. "She cracks her whole body constantly, and I've told her it isn't good for her, but she says if she doesn't, it hurts so much worse."
I almost laughed out loud, I know it's not funny but- your daughter=me. You=my Mum. We have the conversation on a weekly basis. I laugh out loud because your daughter's story reads almost like mine.
I'm 21 years old and I've been having health problems quite similar to your daughter since I was 14. I want to give you as much help as possible, so I apologize if my answer is a bit jumbled up or doesn't read well.
Has your daughter had blood tests done? ANA (antinuclear anti-bodies, this indicates autoimmune disease), CRP, ESR (both measure inflammation in the blood), Complete blood count, ENA panel (usually ordered after a positive ANA, but with your daughter's symptoms you should have one done. They look for the specific anti-bodies found in Lupus, Sjogren's, Mixed Connective Tissue Disease, Rheumatoid Arthritis). Also have her thyroid tested, Celiac disease panel, lyme disease (although I've read this can be unreliable), rheumatoid factor, Epstein-Barr virus, urinalysis and check for deficiencies- b12, foliate, iron, vitamin D.
I have had nearly every symptom you list with your daughter, pain, can't get out of bed, legs going numb, headaches, eye twitching, I don't have the falling over or the tremors. My doctor said Fibromyalgia, but they were wrong.
It sounds like it's something neurological going on. I think the neurologist you saw yesterday was hopeless. You need to remember that you and your daughter are the customers. If the doctor isn't ordering tests or taking you seriously, demand to know why not. If you're not getting any answers then find a new one. Your daughter's health is more important than some neurologist who is sick of their job.
Keep a thorough diary of her symptoms, especially when new ones appear. Write down which things are troubling her on that day.
That's ridiculous about not being able to find a rheumatologist. There are pediatric rheumatologists who specialise in young people. Even if there are no pediatric rheumatologists in your area, a normal rheumatologist should be able to see her. I don't understand why they would say that. My friend was diagnosed with arthritis at aged 18 months by a rheumatologist. Demand to see one, don't take that stupid excuse.
One thing that might be worth seeing if you can get a doctor to do is to start your daughter on a course of Prednisone. It's a steroid, but it's very effective at suppressing any inflammation or anything autoimmune. It's a good way to rule things in and out. My doctor did this and I felt so much better, so my doctor said it's definitely an autoimmune inflammatory arthritis. It can be difficult to go into a doctor's office and demand something like this. You could say that a nurse at the neurologists recommended it, or make something up.
I don't know anything about Multiple Sclerosis, but I know it's a neurological condition, so it might be possible. This website has a list of tests that can be done if it's thought someone has MS- http://www.labtestsonline.org/understanding/conditions/multiplesclerosis-3.html I'd suggest looking at that page and then book marking this website so when you get your daughter's test results you can look on here and interpret them for yourself.
I'd also recommend asking for a copy of all blood tests and other results. I've had blood tests done and the doctor has said 'oh everything is normal'. I get a copy of the results and there are some tests that aren't normal! It made me so mad!
Just keep searching. Don't give up. Remind your daughter of how brave she is having to go through this and that you're proud of her. Don't say things like 'i wish I could take your pain away' or 'I wish it was me, not you'. Those comments aren't helpful. If you're not happy with doctors, find new ones.
Good luck. My email address is open on my profile, so if you want to ask any questions or talk or whatever, you can email me =]
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