I am a newbie guys..

Mike,
Welcome to the CP site. I'm not real sure of your diagnosis and won't be of much help. I can tell you that you've found a wonderful place to ask questions and quiz folks. I've not met anyone in here that isn't caring and compassionate. In one way or another we all share one common thread and that is we hurt most all the time and sad but true it is nice to find people that share your pain and can identify with you. 22 is so young to have been through what you have been through and what you are going through. I hope someone in here will be able to be of more help than I am. Again welcome.

Hi Mike!

Welcome to the Family! I am sorry you were driven to look for this kind of help, but at least you've come to a great place for support and friendship. Obviously we're not medical professionals but we can share our experiences with you and others.

I agree with Skeye...age discrimination is alive and well when it comes to treating chronic pain. Doctors are worried about dependency and addiction and with good reason, BUT there are good types of treatments and medication that can help even if you are young. One thing that researchers have found out...The Arthritis Foundation and Stanford Pain Center...is that addiction is extremely rare in people with chronic pain. We're talking less than 1/2 of 1%! But the also have to weed out the true CP patients from the drug seekers and those folks along with the street druggies are what not only give us a bad name but make it nearly impossible for some to get proper and respectful treatment. It's shameful how some people are left to suffer in pain only because others have lied and cheated the system ahead of us...and we see it daily on Healing Well.

And I agree with the other suggestion...it IS best for your doc to decide on what med's to try. But that said, it is fair to share what works for me. I also highly suggest you not go into your doctor and ask for a specific medication. If you had something like high cholesterol and asked for Lipitor not one person would even raise an eyebrow. If tests showed you needed something for this condition then the prescription would be yours in a heartbeat. BUT, if you go in with pain and ask if you can get a prescription for Oxycontin with a side of Vicodin...you best start heading for the door. See what I'm getting at?

I have asked my doc if specific medication were something that might work for me, but consider your own relationship with your doc before you do. Personally I take oxycontin and percocet for break through pain. It's a serious combination but it's the only thing that lowers my pain enough to live some sort of meaningful life. I am fortunate to have a doctor who believes in respectful treatment and quality to life. But he's no fool either. I have known him for many, many years as a patient and also as a fellow member of our community. Having a good, long standing rapport with your doc makes a huge difference.

OK, I've rambled on long enough. I do hope something I've shared is helpful. Always ask any question you want in here. You are among friends and 'family'.

Hugs,
Chutzie

Mevans,

I turn 23 on Friday, so I also understand that sometimes its harder for the medical community to understand younger people in pain. I know I always get weird looks at my PM clinic. Hopefully you and your doctor can work out a plan that you're more comfortable with!

Jenna

Hey, Mike, glad you are feeling comfortable with us already. One thing I'd like to point out is that when you are checking out PM doctors ask whether they prescribe meds plus do other procedures. Some don't prescribe meds so ask before you waste your time.

Hi Mevans,

I too would like to welcome you to Healing Well. I am so glad that you found us but always hate to see another new person come along that is stricken with CP. From reading your post you are a veteran when it comes to the pain dept, so unfair for someone your age to be afflicted with something that most tend to think only happens to the older folk. 

Chutz really gave some wonderful input for you to consider. I do hope you have a good PM that will help take care of you.  I am sure it is difficult getting a dr to understand that someone your age is having horrible pain. It is like being in a catch 22. Like she says if we go in to a dr and ask for a certain pain medication that pretty much writes your ticket out of that office. All of us here could say what pain medication we take, but since we metabolize medicine differenty, what may work for one person may have no effect on another.  It would be great if you could get a long acting medication and then something else for break thru pain.

Uniquely Me is our lead person here on Methadone. She has been on it a long time and really knows the ins & outs for it. But, it is a drug that really should be used as a last resort since there are so many other potential  meds that are effective.it can be a wonderful pain erliever no doubt. It has the half life time that has to be dealt with. Another thing about it is it should only be used as a long term medicatrion. It is not for short term use.

I hope you are able to get some real relief soon. Take care and keep us posted on how you are doing.     

Straydog,
Thank you for the input. It is hard to relate to others at times because of age, but as I see it, it only makes us stronger. I dont think I would consider methadone until a last resort like you said. It seems to have very benificial relief to a lot of people. I was just given a new referral to a new PM dr here by my orthopedic surgeon. He thinks that he would be able to do a lot for me.

Alot of my pain is not only coming from the PVNS of the hip, but from my shallow socket itself. Because of the NF I have, it acts sort of like a patient with displaysia. I live in tucson, az and on the 22nd of this month I am seeing a specialst in san diego to get advice on a new procedure they call "Peri Acetabular Osteotomy". Although this does not solve the PVNS, it will help some of the other issues of te hip. Gotta take a step at a time right?

Thanks again for the posts guys. Between my massive erray or studying/work I find enjoyment out of relating alot of issues I have not been able to do before.

Mike

Mike,

Wow! I wish you the best with the orthopedic surgeon in San Diego. This past spring semester I did a research internship with a pediatric orthopedic surgeon at our local children's hospital. In addition to working in the lab I also got to observe a lot of clinical work, including spending one day in the OR every week. I actually saw bilateral periacetabular osteotomies done on a 5 yr old patient. That particular surgery sticks out in my mind because of the length & extent of the procedure. Most orthopedic surgeries that I observed took anywhere from 2 - 5 hrs. This one surgery though, took over 10 hours (although the kid had cerebral palsy, so she had other more minor orthopedic problems with her hips/legs that needed to be addressed as well)! I hope I'm not scaring you or anything, but I just want to wish you lots of luck & strength. I'm so sorry that you even have to consider such a tough surgery, you must have phenomenal inner strength! Of course the hope of being pain free, or at least being able to manage our pain is a very powerful driving force & it's all worth it if you can obtain that goal, but still, I admire you! I hope your visit with the doctor is enlightening & that he can fix you up with minimal additional pain & discomfort!

hugs,
Skeye