A much needed vent..

Bluejeans, as you are describing wanting to be on "the lowest dose possible", that is exactly what I was trying to do! I didn't realize what the fentanyl patch was until I researched it and as soon as I found out how high up it was on the pain med scale, I wanted off! Like I said in a previous post, I believe that is a med that should be used after everything else won't work!

about the addiction, first I want to re-state, pain doesn't care how old you are. I can't control that I was born with such a rare disease that causes so many problems, including severe chronic abdominal pain. It feels like knives being stabbed all over under my ribs. Why should I suffer with 7-9 pain levels every day just because I'm 17? What is the right age? That's what really angers me! Plus, addiction is RARE in people with chronic pain. I don't even have access to my meds, my mom keeps them because she was worried about that too as addiction is all over the media now. Plus there is people in my family with drug/alcohol addictions, I informed the MD of this when she was telling me all of this is chronic and I most likely have high pain levels the rest of my life. She assured me addiction was low risk for those with chronic pain & if my mom or myself were worried, that I could have my mom hand them out at the appropriate time. When I am 18 I will manage my own meds as my mom feels comfortable because the pain clinic does drug tests and calls in for random pill counts.

I use ice/heat, warm showers/baths, muscle relaxers, nerve meds, massage, physical therapy and have tried acupuncture. I also believe pain medications cannot be the only modality to manage pain.

All of this is not meant to be said with anger to anyone, just angry about the way people perceive chronic pain only occurring if you are "the right age." I have pain just like everyone here & I'm basically being told my quality of life should suffer because I'm 17.

Oh, hunnnny, I'm not mad at you specifically.

I just hate how addiction affects all of us chronic pain suffers, especially us younger ones.. But I feel personally that if you have diagnosed conditions that cause severe pain you should be treated for that pain! Like I've said, addiction in chronic pain patients is low, so why punish us?

Yes, those are all reasons why I wanted to get off the fentanyl. I was only on for 2 months when I started tapering, I just wanted to go back to my 10mg oxycontin 3x daily with 15mg oxycodone for BT. That's what I was originally on and was comfortable going back to that but somehow it got mixed up that I wanted off all meds. Ugh, can't wait to get to the pain clinic. While I was in the hospital, the MD from the practice is the one who came up with my meds for my daily pain so I'm hoping he still feels this way once I become a patient of his. I've never personally met him but his NP has visited me numerous times while I've been an in patient and she's very nice so I have good hopes for the pain clinic. Especially because they offer things like injections and I've even heard the SCS and pain pump could help me with my abdominal pain! Defenitly looking forward to it.

Still not getting any sleep, it's 5:48am here and I've been up all night. But I have a dentist appointment today so hopefully that'll take my mind of things for awhile. I know they've been wanting to pull my wisdom teeth for a couple years and since its been a year since I've seen them I'm anxious to hear what they say, especially since 3/4 have started to grow in. Just what I need, more pain.. lol.

Some of my arteries were treated.. But there are still many left untreated which is what causes my high blood pressure. With the high blood pressure untreated, this is what generally leads to death.. But I personally feel there's not even close to enough known about mid-aortic syndrome to be able to tell what will happen in the future so I fairly optimistic about it..

When I go to the pain clinic I plan to have a completely open mind and will try whatever they suggest. It'd be nice if I could go back to just using norco for BT pain.. But it made me so nauseous and I would often vomit. With the Gastroparesis they don't want me having anything with Ibuprofen/Tylenol, something to do with ulcers or such.. These are the main reasons I was switched to oxy. Oh yeah, with the BT med I agree it should not be taken everyday.. But that's the schedule they had me on. It was a regular maintence on top of the oxycontin.. Not exactly sure why, but it did handle my pain quite well!

Thanks for the well wishes!

Yes, for anyone...high blood pressure left untreated can be deadly...The key is that you have good Drs. starting at a young age and there are many medications out there for this to help as well as diet and exercise as directed by your Drs.

Again, you are so lucky to happen across a Dr. in the smaller hospital that specialized in this rare illness right where you live! I just think that it is a huge mistake for any Dr. to try and put a time limit on someone's life...especially trying to say it "could" be 10 or 20 years from now as I mentioned, there can and will be many medical advancements in that time so it's good you have a positive outlook.

And keep in mind that you had a very non experienced Dr. about pain management treating you with those medications so it will be good to have ones that specialize in PM. Of course it handled your pain as you were on 50mcgh of Fentanyl and 60mg of Oxycodone a day!!! That is also why you were probably nodding off and having other issues...That is an extremely high dosage to put someone on out of the gate!

There is OxyIR in 5mg that I use for breakthrough which is where many Drs. will start. This is just plain Oxycodone without Acetaminophen.

That's the thing with pain management...we are still going to have pain each day. There are also many other type of meds like nerve pain meds which I wouldn't doubt you have this type of pain as any surgery will make adhesions which tug/pull and irritate the nerves as well as the surgeries and endometriosis disturbs millions of nerve endings.

There are also muscle relaxers to take as needed and even antidepressants which both help someone cope emotionally with chronic pain as well as with the physical pain.

I would hope that you can get into some type of counseling as going through so much at such a young age is traumatic..as well as your dad having brain cancer....Starting now and getting some really good tools to deal with your pain issues is important. This also helps some patients use less medication.

Chronic pain management is about using as many modalities as possible to help get the pain to a manageable level....not just about the opiates...I think that was what Bluejeans was trying to stress to you.

Hopefully your Drs. have started you on your new diet plan to help out with the pancreatitis issues as well as a good physical therapy plan to find exercises and ways you can stay healthy with all your issues...

They should try you on something like Bentyl for stomach spasms. I have never heard of Flexeril being rx'd for stomach issues. The BP can be handled easily with a combo of meds, I take 3 different kinds of BP meds & have success in getting it down.There is a ton of BP meds out there too.

Take care....Susie

The problem if you have CP is not getting hooked. Your body builds up a tolerance to your meds (as with anything) and you need to take more or something different otherwise they lose their value.

I honestly have never felt that I would become "hooked" to my meds. The only downside that I see is w/d if you run out early, etc. It's a side-effect but you should be used to that with any medication. Also, if you have a good doctor, they will warn you of this before putting you on narcotic meds.

I still do not feel bad about you w/d'ing. If anything, I actually am with your doctor on this one. I understand your condition, but the fact that you are only 17 and were on a dose of medication that is reserved for some cancer patients, and he did a gradual taper for you, that you have nothing to complain about in terms of w/d. He did the taper the right way and at this point the w/d you feel will only last 1 day or maybe 2 and will be mild. You will be fine.

I do not disagree about pain and age. I consider myself young as well.

But at 17, you should not be on that heavy of a dose of pain meds. I'm sorry, I really am, but at that age you really should not be on pain meds that are that strong of a dose. That is just my opinion.

Kayla,

I guess that was part of my confusion last night..... If this had been me and the doc was tapering me off the Oxy (and I needed it) - I would call and say that we had a miscommunication and that I need *something* for pain control until my pain management appointment....

None of us are belittling you..... Personally, I'm just speaking as a chronic pain patient who is much further down the line than you are, and these are things that I wished someone had told me earlier. Then - maybe I wouldn't be sitting here at age 40 with fentanyl barely touching my pain (that's what tolerance does).

Nobody here wants to see anyone suffer. And I think many of our comments/questions are out of concern.... not people ganging up on you or belittling you.

In my own life - when many people are saying the same thing to me - I've made it a point to stand back and really HEAR what they are saying.....

--Tina

I am on a 75 mcg fentanyl patch and I consider 10mg of oxy to be a high dose. In my opinion, 15-30 mg of oxy is a considerable amount, especially when taken at once as a single dose.

Hi Kayla! I am SO sorry that you are having to deal with so much at such a young age - it really isn't fair. Just the chronic pancreatitis alone - I have been witness to how painful of a condition that is. I wasn't familiar with Mid-Aortic syndrome so I read up on it a little - very complex and can cause a lot of pain on top of it. Although there are many diseases, conditions, syndromes that have general life expectancies, new treatments are developed every day - you have every reason to stay positive and be hopeful! You have already beaten the odds with your successful reconstructions - I think you will continue beating the odds. I admire you.

And you are right about deserving appropriate pain relief. You should not have to live in pain. In an ideal world, young people should not have to take narcotics, muscle relaxers, etc - but this is not an ideal world, this is the real world. And in the real world there are diseases and conditions that don't age-discriminate and that require the use of these medications because other modalities don't work, or don't work well enough. And obviously medication tolerance is a concern in situations such as yours, but it is a matter of benefits versus risks. As long as you take care of yourself, go to reputable doctors and follow their treatment plans - you are doing the right thing for YOU. I learned a lot from a CP support group that I attended some years ago. I learned that you are not alone - there are many young people who are under-treated for very painful conditions. I was only a bit older than you when my 'pain journey' began. My problems were not as potentially painful as yours are and I fought for many years to get adequate pain control - to even get the recognition that I was suffering. You are right - it isn't fair. And btw, I was prescribed my pain meds the same way that yours were - I took my long-acting 2x/day and my short-acting 3x/day. My doctor did it this way so I could avoid the pain 'spikes', instead of having to 'beat' the pain down once it already started. I had great pain control for a very long time with this regimen.

You appear to have a good head on your shoulders - and you are obviously a fighter and a survivor. Those things will carry you through the tough times. Just remember to always advocate for yourself - speak up, be honest, and make sure the doctors hear what you are saying! I'm pulling for you, Kayla! C:

Post Edited (Splashdancer) : 2/4/2013 1:08:40 PM (GMT-7)

Wow, thanks Splashdancer. Your words really touched my heart, it's nice to hear from someone who understands! Thank you, thank you!