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Chronic pain at 16 years old.

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Chronic Pain
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Posted 7/12/2012 10:41 PM (GMT 0)
Hey, my name is Chelsea and I have scoliosis. I'm 16 now but I was diagnosed at 9 years old. I have had 11 surgeries on my back (Installation of Veptr rod-1, lengthenings-9, and Spinal fusion-1), as well as 2 on my hears to fix my hearing loss but that is another matter. Having that amount of surgeries has caused me a lot of back pain/nerve pain. I have been put on so many different medications and none of them have worked out. The recent ones I have been on long-term are Lortab, Tramadol and Flexiril together, the Lortab caused me to hallucinate, I know this for sure; fentanyl and Percocet (I had a bad reaction to the fentanyl. I had intense chills, sweats, and nausea/vomiting for 2 months before the doctors figured out that it was the fentanyl that was causing it. Then they put me on catapress to alleviate the side effects and if it didn't help, it would help with the withdrawal. It helped the side effects, however, since it is mainly used to lower blood pressure, it ended up lowering my blood pressure so much that I was so exhausted and I would fall asleep spontaneously, even if I was standing up. Now I am going through withdrawal from the fentanyl. All I have is my percocet and Robaxin. Is there any medication that anyone thinks could be of help to me. It would be greatly appreciated.

-Chelsea:)
Posted 7/13/2012 2:18 AM (GMT 0)
Hi Chelsea and welcome to the forum. Wow,you certainly have been through a lot for your young delicate age.

You did not mention what type of dr is treating you and is this the dr rxing your pain meds now. Most people here are under the care of pain mgt drs. Now, because of your age I do not know if one would consider taking you on as a patient. Fentanyl is a very potent drug and I am sorry it was a problem for you, I am really surprised you were even tried on it. Most drs will not prescribe strong meds like that to a person your age.

I am not trying to be vague here but you really need to be asking your dr where to go from here for a different pain medication. I say this because we all metabolize medications so differently it really is hard to tell someone something they should try because there is a very real chance it may not work for you. This is why I say work with your dr on this and discuss it with him. You have bee through a lot an have quite a medical history and that is another reason to work with your dr closely concerning pain medication.

Take care and keep us posted on how you are doing.....Susie
Posted 7/13/2012 5:19 AM (GMT 0)
Hi Chelsea

I really feel for you, such a young person to have had so much thrown at them. You have tried a fair number of the stronger type pain meds, I think it would be hard for anyone but a doctor to try to offer advice to you. I am in the UK and am not familiar with the ways the pain management doctors work in the US, other than what I have learned here. It seems to me you need the services of a good pain management team. Until what age are you regarded as a child in the US? I know Susie said she would be surprised if a pain management doctor would take you on, I was just wondering at your young age if there may be pain doctors in pediatric hospitals. I mean no offense in trying to classify you as a child, in fact you sound extremely mature, it's just that maybe that a childrens hospital would be best to deal with such a complex topic in a person of such a young age.

I really hope you manage to find some help to allow you to get on and enjoy life. I look forward to seeing how things go for you.

Best wishes

Jane
Posted 7/13/2012 6:53 AM (GMT 0)
Here in the US ur considered a minor until age 18. Of course ur still not able to buy alcohol until age 21. Chelsea it sounds awful what u have been thru!! I don't know much about pain medications but something that I read in ur post , where u said the pain med made u hallucinate, are u sure it was the pain med? I ask that bc when I take muscle relaxers as flexeril is they make me hallucinate bad!! And really crazy dreams too.
Posted 7/13/2012 1:11 PM (GMT 0)
chelsea, i know exactly how you feel; im 22 years old . ive had severe pain in my back since i was about your age , unfortunetly its gotten worse, this past december i fractured my c-7 vert also causing radial nerve damage making my left hand paralyzed. im currently on Morphine ER 30mg 3x a day , Oxycodone 15mg 1-2 tabs every 4 hrs as needed, neurontin 900mg daily ( for nerve pain). the combination of those 3 meds seems to help me alot, remember nothing will work 100% but 75% helps..

 + to add i also have scoliosis of the c spine
go see a PM doctor check a pediactric hospital or specialist... then let us know how it went.





goodluck

Post Edited (Luie) : 7/13/2012 7:19:15 AM (GMT-6)

Posted 7/13/2012 3:06 PM (GMT 0)
Thanks everyone for the replies an help. You have no idea how much I appreciate it:) I do thankfully have a pm doctor. I just got back from an appt with him. Now I am going to take OxyContin which os time release twice a day along with a Percocet and robaxin twice a day as well as another muscle relaxant that I can't remember the name of haha. I'm do glad I'm with a pm doctor that specializes in adults just because he takes me seriously unlike my other doctors. They only gave me stuff that helps minor aches and pains, which do absolutely nothing. It's so hard to be in pain equal to what adults have because no one took me seriously. I've been searching for even 25% relief ever since I started getting the surgeries which was 6 and a half years. I've taken codein, hydrocodone, lortab, tramadol, flexiril, robaxin, Percocet, fentanyl and they also considered butrans but my insurance doesn't cover it for minors. Since the meds were strong, I used to throw up about twice a day until I got zofran. I don't like being dependent on drugs. Ive had physical therapy but all that helped with was sensitivity on the scar along my back. An I'm sure it wasn't the flexibility because I had been on it for 7 months before the others. I also have bad asthma, so my parents are also worried because my breathing sometimes gets shallow.
I appreciate everyone's help! Thank you for taking me seriously!
Posted 7/13/2012 6:11 PM (GMT 0)
Chelsea hopefully you will get some good relief with the new medication. Even better news to hear that you have a good PM dr that is willing to look past your age. Pain does not have a age limit, but some drs do.

I do hope you are watching your breathing, narcotics often affect our breathing.

Take care. Susie
Posted 7/13/2012 6:41 PM (GMT 0)
Thank you, I do hope so too:) It is unfortunate that doctor's can be so strict. It's understandable, but still. I am lucky that they are so eager to help:) What are the withdrawals like with oxycontin as opposed to fentanyl? Have any of you been on them before?
And I will be sure to watch my breathing, especially considering I have taking quite a few medications that make it risky.

-Chelsea:)
Posted 7/13/2012 9:17 PM (GMT 0)
Chelsea,

Welcome to the CP forum of HealingWell.

I'm glad you are working w/ a PM doctor.... do you see also see a pulmonologist for your asthma issues?

I am curious, though, why you are asking about withdrawal from oxycontin? Really, you shouldn't be going through withdrawal w/ any of your medication if you are being treated by a PM doc. If he changes your meds.... etc... he should switch you to about the equivalent dosing so that you don't go through withdrawal. If you are getting completely off a med.... even that should done through a slow tapering process.

So I'm just a bit confused.....
Posted 7/13/2012 10:36 PM (GMT 0)
Chelsea....I was also a bit confused by your last post...you are just starting the Oxycontin...right?

Didn't your Dr. put you on a taper plan and is working with you on switching over your medication?

I'm pretty surprised that he has you on two different muscle relaxers in addition to your two opiates...especially with active asthma....

I hope you don't take all 4 at the same time towards the evening before sleeping...

Obviously we are not Drs. here...but I just warn being very careful about these medications...

I assume that your parents are going with you to these appts and going over all the medication/side effects and dosages...

Also...if the medicine is so strong as you mentioned it is making you throw up twice a day...that is a huge concern...not to masked over with Zofran....

The medicine we use...especially opaiates...are just one small way to help our pain...It should not knock us out or be so strong that we really "feel" it...

I couldn't even tell you anything different from when I take my medication except a small drop in pain levels..

And obviously no one should have to suffer in pain no matter if they are young or old...but it's also about being careful about how much someone takes when they are young so that if pain is going to be a part of your life....then there has to be room to go up in dosages/medicine...

So...that is why I hope this PM has you on a comprehensive pain program that includes many other modalities besides medication...

Welcome to the boards...it's a wonderful group of people who can truly empathize with you!!
Posted 7/14/2012 3:18 AM (GMT 0)
Chelsea,

Welcome here. Your story is really amazing, to have gone through all you have and to only be 16 years old. That's amazing really. With your asthma, I would be concerned about some of the pain meds, as pointed out by others, some of what you have been on, can be very dangerous for shallow breathing issues even if you didn't have the asthma. I am on Fentanyl, and have been so for about 8 months now, and my doctor and his nurse constantly warn me to be on the alert, if I ever suddendly get breathing issues, or shallow breathing, for me to call 911 Emergency, also being with all the heat can make this issue even more critical.

Hope you get the right med combos for you, and that you can do well in the future. You have a whole lifetime ahead of you, despite what you have been through and endured at such a tender age.

My best to you, now and in the future.

David in South Carolina
Posted 7/14/2012 3:28 AM (GMT 0)
Hi ChelseaDimples. I can't offer you any advice on the meds,PM,dosages etc. I'm here on HW to learn myself . I did want to tell you that I hope you find comfort and quality of life that you deserve at such a young age. I wish you the best!!!
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