Oh sh*t, you probably have Ehlers-Danlos Syndrome (as the underlying source of that unusual set of problems, including the anxiety). You need to figure that out before you do anything else. Pain meds often are ineffective for treating EDS.

Sorry it took me so long to read the thread - I've fallen behind due to less Internet time than usual.

Whoa!

Emily,
I don't think I've ever said or implied this of another post..
Please, for the most part, ignore what the previous poster said.
It appears from your profile that you are already diagnosed.
And..if there are any undiagnosed issues..they're certainly not for folks ...especially ones without medical degrees..to be making.

I hope that post didn't cause you undo alarm.

Hugs...jc

Emily I really hope that the poster aboves post did not alarm you. Please understand that nobody on this site has the right to offer any diagnosis to you, only your Dr. can do that. Suggestions for pain control or experience with different medications are one thing, but nobody here has the right to try and offer you a diagnosis based on something you typed on a support site, so if this happens on this site or others that you may be visiting, please don't pay attention to them and don't let them upset you.

Take care,

kat

What's wrong with you people? Don't you understand how important it is to know the underlying diagnosis? I gave a good reason - medications not working. Other good reasons would be for family awareness - it's usually genetic - and looking out for (and maybe warding off) other problems that can develop later. Also, I said "probably have" and encouraged her to seek more information (I meant ultimately confirming with a doctor). The unusual conditions she cited are usually secondary.

For heaven's sake, if people encourage ignorance, then no wonder few members seem to get any better.

Hi Emily welcome to this wonderful group. I agree with what everyone had told you. I am also on some of the same meds as you. The breathing exercises work well instead of counting when I breath in through my nose I say in my head healing in. & when I exhale I say pain out. Or relaxation in pain or stress out. Another wonderful tool I have found to work really well is using self-hypnosis Cd's. Just google self hypnosis pain CDs, they also have them for sleep, relaxation, stress etc. You need not be afraid of them you will always be aware of your surroundings & I promise you they won't make you cluck like a duck lol. Many can be downloaded to an mp3 & it gives instructions on how to convert to cd. many sites have sample recordings so that you can find a voice that soothes you. Hope this helps I'll be praying for you & I look forward to getting to know you!
Hugs & God Bless.
Lisa :)

emily, welcome. i'm glad you found our group despite the circumstances.

i'm so sorry to hear that at 15 y/o you're dealing with CP. i do believe in using every alternative medicinal technique possible along with traditional medicine.

school is very stressful physically and emotionally. i agree that if there is any way you could home school or combine that with part-time classes, i think that would ease your burden some.

if you haven't checked out youtube videos, there are some good ones that i no longer have bookmarked, but they're under senior stretches. i will look. if you do a DS search, you may be able to find the old posts.

wishing you the best in living with this thing.

also there are some good posts on diet and food. even with CP, i still love to cook and go on too much about it.

(Okay, dude. None of these people have been remotely ignorant and have actually been extremely helpful to me. There's no reason to get defensive here.) I know Ehlers-Danlos Syndrome can be a complication of a tethered cord but I had a release surgery last year. I also don't have any joint or bone problems other than a calcium deficiency or any odd skin conditions. Anyway.. Thank you guys for the advice and encouragement. The relaxation techniques have been a big help. I'm in the process of trying to get on some new medications, it's just taking some time considering this is a small town and my neurologist and pain management doctors are a few hours away. I've been doing some half days of school which have been a pretty big help but I'm just frustrated because it's like the pain just randomly comes and goes. I can't plan my day out because I don't know what I will or won't be able to do. I'm sure you guys can relate.

hi and welcome you have a powerful set of pain killer elavil is a anti depresson pill, are you on lyrica and neurontin they are both neurontin
baclofen is like anti in inflammatory i think .Tramadol is for pain so is lyrica lortab is for pain .
that's lots of meds for one so young hugs minnie

Cause, not complication. It was a reasonable thing to bring up, so I think two people owe me an apology. Anyway, I'm glad it has been considered (although I don't think it should be completely ruled out based on a lack of typical symptoms, sneaky devil it is).

How can you have a calcium deficiency? (Ah, I see that can cause anxiety.) What about vitamin D level? Omege-3 (fish oil or krill oil) can help a little with pain and are fine for most people to take.

Stretches I don't know how anyone could comment on, since I have no idea which areas are tight. A physical therapist could help with that.

Isn't the Chiari malformation causing extra pressure in the brain? If so, what about medication to directly lessen that? Also, how is your sleep?

I personally think that foursome of pain meds is too much, especially for a person who probably isn't finished growing. I suggest eventually trying to figure out what doesn't help at all and get rid of it.

Emily..
Sorry, hun, that you kinda got caught in a little conflict of opinion here...it happens..:-).
Hugs.....jc

They've pretty much ruled out Chiari, although Chiari type zero sounds like a pretty reasonable thing. I know that's a pretty touchy thing that a lot of doctors disagree on though... I actually just started taking fish oil pills yesterday, they can't hurt. I'm on 50,000 units of calcium per week but no one can really figure out why at this point. The calcium has help my bones quite a bit though, regardless of the cause. I had a back fracture last year and it's prevented any more similar issues.

I do agree with you guys on all the meds. I've been experimenting with different ones here in the past couple months and trying to get on some that are more helpful without any harmful side effects. It's getting to the point where I urgently need to get off of a lot of them because I'm pretty sure I'm developing an ulcer despite the fact that I'm on Prevacid. My stomach is beyond messed up. The one thing I do know is that I've been on Lortab a long time and my tolerance is going way up. I'm not addicted to them but I'm scared it may happen.. I realized a while back that it was giving me rebound pian - the doctors thought I had RLS but I backed off on them and it magically disappeared. My issue is though that if I don't take them my back pains get worse. I've been doing better with it though. During the month of August I went from four 10 mg tablets a day down to two. :) Right now I'm back up to three but just temporarily because I've been so active and have thus had more pain.

Good news is that I was told this week I needed a blood transfusion because of my iron deficiency anemia but then had it checked Thursday and it's been stable. It's still not normal though so I was referred to a GI doctor and hematologist. I feel way better knowing that I can get at least some of this taken care of. It's good to know that at least some things are curable.

Home school would be so much easier on me but I've done it in the past and it was just so depressing I decided I would rather go to school and be in a little more pain. And with band and academic team going at full speed right now I wouldn't ever be able to compete if I stopped going to practices.

Emily,
Always remember, and never forget.....that you cannot become addicted to pain meds unless you misuse them (like taking them for the high, instead of the pain relief. You can become addicted if you use more of them just to get the euphoric feeling. I had that problem years ago taking Percocet. I was starting to take them even when I was not in pain. I stopped them immediately, and have never had it happen since.

And you are correct: the number of meds you're taking can really mess up your stomach. I'm glad you're going to a GI doc- he/she will be able to get you on the right medications which will help keep your stomach safe. Also, listen to what he/she says about WHEN to take them- especially the ones you should take with food. I know it's a pain when you're in a hurry to get to school or a practice, but it's essential with many meds to take them with food. Some meds work better on an empty stomach, so your doc will be able to tell you which ones they are.

As for home schooling, I agree that it's boring and isolating at times, especially when you're a teenager and there are so many things you can do to socialize. I home-schooled my son when he was 11 and he hated it. Plus, he's the kind of kid who does better with the constant supervision of a teacher. He practically failed his courses at home because he lacked the discipline needed to do the work by yourself.

Good luck and I hope the docs can straighten out your problems and get you on the right track!

Sandy

Emily,

With Narcotics there is a big difference between addiction and dependence. Yes your body does become dependent on narcotics after awhile if you've been taking them long term, addiction only happens when you've taken them more than prescribed or to create the euphoric (high feeling) that they bring.

Most towns have a Home School group that kids who Home School can plug into so they don't feel so isolated and alone. You can call your towns County Seat, or Welcome Center and they should have the information on that. These Home School groups usually try to get together and do outings or fun things together so you can be with other kids your age regularly.

Vitamin and supplement deficiencies can happen in the body with no recognizable cause. 2 years ago I become Vit. B12 and Vit. D deficient for no apparent reason, but have to take supplements and injections daily to keep them up now.

Someone previously posted that Neurontin and Lyrica are both Neurontin and that is not quite accurate. They are different meds but they are both anti-convulsants used to treat nerve pain. Taking 2 of the same is a bit of overkill, but your Dr.'s may have you taking them for other things.

You've got a lot of things on your plate, and for your age, you seem to be handling them with great strength.

Take care,

Kat

This is where I get irritated - thinking that seems lazy. Group members need help, starting with correct diagnosis. But that can't happen if people don't want to seek knowledge.

Chiari can cause hormone abnormalities, which in turn can affect things like calcium. Is there any evidence of fluid buildup within the brain?

Also, none of the pain meds mentioned are to my knowledge substances addicts like to use. My concern isn't addiction: it's effects on the stomach, hormones, etc., plus drug interactions.

Emily..
I actually did look up EDS before I replied about us not being Dr.s..and, am assuming, given your profile info..that your Dr.s are on top of things in regard to your DX.
You're pretty sharp ( in spite of your youth..haha..).. so, I'm sure you know which of your meds are narcotics or drugs of potential abuse.
And that, of course, you can Google any Med info.

I'm sorry for your frustration. Not being able to plan things is a common difficulty with chronic pain. So..yep..we do relate.
I must admit, hun..that I balk some in my replies to you...because, well, frankly..I'm frustrated FOR you. My pain didn't start until much older in life..and I sometimes get caught up in the unfairness of it. I can't imagine having started having to face the limitations and frustrations at such a young age.

Sorry..nothing very helpful in this reply..just trying to be here, supporting you.
Hugs....jc