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Posted 10/28/2012 2:23 AM (GMT 0)
Hi everyone I'm Cryssy and have been diagnosed with Bipolar I, chronic pain, fibromyalgia, and migraines. I'm grasping at straws right now to get out of this pain. I have a decent PM neurologist and a great psychiatrist. I'm struggling with proper pain management.

Trileptal 750mg twice daily
Prozac 20mg
Xanax 1mg prn
Zanaflex 8 mg for sleep
Percocet 10mg prn
Just started Butrans patch 20mcg/hr

All over miserable!
Posted 10/28/2012 3:49 AM (GMT 0)
Welcome to HW Chronic Pain, Cryssy. Sorry that you need to be here, but glad you found us. This is the best place on line to talk with fellow CP folks, make and female. We are a very understand and non-judgmental group.

If you ever need to vent, to get things off your chest, or if you are having a bad day, please feel free to do so. It can help you feel better, and you are preaching to the choir here.

Hope things start improving for you, and please, never ever give up hope.

We are here for you, anytime, for help and support.

Please keep us well posted of your situation.

David in SC
Posted 10/28/2012 3:59 AM (GMT 0)
Thank you David. I just needed to find people like me. No one around me even my own husband understands the pain I'm in. My three kids don't understand why their mom is in bed all day. It's just getting tougher by the day. I'm only 31 and feel I'm too young to be in pain all day. I thought this Butrans patch would be a miracle but unfortunately I have experienced no pain relief yet.

Any suggestions on finding a real PM doc. I'm in the New Orleans area. I have been given so many injections and they don't work. Just curious.
Posted 10/28/2012 4:10 AM (GMT 0)
Yes, Cryssy, 31 is way too young to be dealing with such serious pain. I am fortunate that my wife is a well experienced nurse, so she is accustomed to those with chronic pain. I am 60 and my 3 kids are all adult age, so I feel for you having to deal with that.

I have never been on the butran patches, but have been on the Fentanyl patches for nearly a year now, they are big help for me. I am at 75 mgms and we swap out every other day, instead of the more normal every 72 hours.

I am in SC, so can't help you on a name in the Big Easy. BTW, a few years back, pre-Katrina, all 3 kids of mine lived in NO, we were one set of nervous parents until they all moved back one by one.

Hopefully someone from your area, may be able to give you a name or suggestion.

Until you have the right doctor and on the right mix and doses of meds, it will be hard to feel that its under control, hopefully that is around the corner for you.

Until then, all you can do, is live one day at the time, not to get over whelmed, and to not give up hope.. You got your whole life ahead of you at your age.

If you husband has issues with your pain, invite him to spend a little time at our site, and let him read some of the horrific stories going on here, with men and women, young and old, all struggling with serious pain issues for various reasons. It's hard for those outside our world to totally appreciate the daily struggles we go through.

David in SC
Posted 10/28/2012 11:18 AM (GMT 0)
Cryssy, I'm in Louisiana, near Lafayette, and if you find a good PM, before I do, let ME know.

They are rare to find here. I'm in the LSU system, and they have shut the PM program down due to budget restraints, so their "Family practice" docs are supposed to be handling that. right. shakehead

If you have insurance, Oshner's is a great hospital, but I'm not sure if they have PM as part of the hospital itself, or there may be a private practice in the surrounding professional buildings. If you can travel to Baton Rouge, Our Lady Of The Lake is an excellent hospital as well. You'll probably need a referral though.

But Louisiana has some serious drug laws on the books. It's extraordinarily difficult for any doc to "dial it in" as it were. Changes in prescriptions like that raise red flags, and no doc wants red flags. So expect a slow roll here. They will get there, but it will be small steps.

In the meantime, at least you are in one of the best food cities in the world. take some comfort in that.

And we're always here.
Posted 10/28/2012 2:38 PM (GMT 0)
Living Color and Purgatory thank you so much for replying and concern. It feels nice to talk to others who care and who understand. I'm so young and just beginning my pain management in a city with limited resources. I really love East Jefferson Hospital Living Color and all of my doctors are located here. I do happen to have great insurance, Aetna, because my husband works in oil and gas and they pay for most things. I've had over 12 surgeries in five years. I just got my gallbladder out at the end of July.

But as you said LivingColor it's almost like my neurologist who specializes in pain and headache management is not very adamant about getting the pain under control. I've been with him for three years and with my psychiatrist for 4 years. I don't doctor shop and never have. So this new system to flush out addicts is only hurting the people like us in real pain. When I went to my neuro last week and explained that I spend all day in bed he decided on the Butrans because I was taking more Percocet than I cared for. He only prescribes 45 every 8 weeks plus Fuorinal so he knows I'm not an abuser. He specifically pointed out to me that my next pain step was OxyContin and I didn't even ask for it. I just asked for better pain relief.

Well I'm sorry for rambling. I'm seriously thinking of finding a new doctor who is worried about me and not laws and nonsense.
Posted 10/28/2012 3:24 PM (GMT 0)
Cryssy, I started pain management at age 30. I was getting pain meds or muscle relaxers on a semi-regular basis from my primary doc before that, I was working in a retail store and standing 8+ hours a day plus heavy lifting, like the old style TV sets. He finally said it needed to be managed, so really it's been since about age 27 or so that I've had to deal with pain on a regular basis.

I grew up doing heavy labor, farm work and such (grandfather owned a dairy farm), despite the scoliosis, but never had any real back or any other problems other than my vision. I was your basic 6'2" farm kid who could do anything, lift 100 lbs sacks of feed, climb anywhere, wrestle calves, ride horses and off-road motorcycles, just very active. I got the occasional tweaked muscle or sprained ankle, stuff like that, but no major falls or trauma, except getting kicked by a horse once at age 17, but I walked that off, eventually, after I caught my breath. Got xrayed for broken ribs, checked OK, went about my business.

But, I have arthritis on both sides of my family, and it seems to be a bad case of early onset arthritis in my case, compounded by worsening scoliosis and some other stuff from earlier injuries/wear and tear, and the pain causing other neuro problems.

So I've gone from a very active outdoor lifestyle with practically no pain, to a more limited one that was controlled with pain meds (when I was working and had insurance and PM), to now a nearly sedentary lifestyle with nothing but over-the-counter meds, and what my psychiatrist (who thankfully works on a sliding scale) can do for me. (Thankfully, the pharmacy I have access to through him charges sliding scale too, but my psych meds are nearly $90 a month out of pocket)

You are not alone, is what I am long-windedly saying.
Posted 10/28/2012 11:03 PM (GMT 0)
Hi Chrissy. Welcome to the community. I'm glad that you have found a community such as myself that cares and knows what it feels like to be in chronic pain everyday. I know it does suck to feel that at a prime age of your life that the pain holds you hostage from having a quality of life and even taking care of your husband and kids. Kids do not understand that mommy hurts wants nothing more than to care for them. I know, my youngest who is 7 says all the time"mommy I wish you wasn't in pain all the time and worked in that jail".


It's hard too really get to that right pm that can diagnose your condition and put u on the right type of meds. Do feel free to vent here. The people at this site made me really feel right at home here.
Posted 10/29/2012 1:40 AM (GMT 0)
Hello Chrissy and welcome to HW. So sorry that you need to visit here, but just wanted to let you how great this group of people really are. I have also been officially seen by a PM dr for almost 10 years for a range of issues (take a peak at my signature). Its tough, especially when you are young, we get looked at like we are "full of it" all the time. I am sure you will love it here!

Hugs,
Shell

LivingColor said...

I grew up doing heavy labor, farm work and such (grandfather owned a dairy farm), despite the scoliosis, but never had any real back or any other problems other than my vision. I was your basic 6'2" farm kid who could do anything, lift 100 lbs sacks of feed, climb anywhere, wrestle calves, ride horses and off-road motorcycles, just very active. I got the occasional tweaked muscle or sprained ankle, stuff like that, but no major falls or trauma, except getting kicked by a horse once at age 17, but I walked that off, eventually, after I caught my breath. Got xrayed for broken ribs, checked OK, went about my business.
.

Oh my Living Color we must be related somehow,lol. Sounds like my childhood to a "T". Lived on a farm, handeling 100 pound feed bags by age 10, kicked by horse, broken ribs. Wrestleing animals, running farm machinery, you name it I was involved. I was a Tom Boy,lol.
Posted 10/29/2012 5:29 AM (GMT 0)
I'm new to this board, but not to Chronic Pain I was originally injured in the Nam 1976 broke my back three back surgeries with this last one having screws rods and connectors it was done L4, L5
S1 I haven't been pain free in over 40 years the last surgeon told mr that he would only be able to stabilize he area and that I would just have to learn to deal with the constant pain so I'm on morphine and Zoloft for the depression that you get when your suffering my kind of pain knowing there will never be any relieve EVER

Hello; Welcome to the CP forum. Please read our forum rules; thank you... In addition, we ask that all new members start their own "intro" thread. You could simply copy/paste what you've already written here. Thanks--Tina

Post Edited By Moderator (Blessedx8) : 10/29/2012 1:43:38 AM (GMT-6)

Posted 10/29/2012 7:35 AM (GMT 0)
Thanks everyone. I just started reading up on pain management laws and came to the realization that with the new state and DEA crack down on doctors my life ahead of me will be destined to be miserable. Especially in my area of New Orleans. We just implemented red flag computer systems and it has me upset and I now know why my neuro pm said he doesn't rx OxyContin. I have been restricting myself to the small amount of Percocet and Fuorinal that he gives and trying cortisone and toradol injections with no relief. I've even been to one of those pain clinics for facet injections with no help.

It's not like I haven't tried to find other pain relief means. The head and neck pain are so excruciating that I cry in a ball several times a week. I keep up with my appointments and with my psychiatrist appointments. The only other reason for pain meds was for my gallbladder removal in late July. I'm obviously not an abuser. Well from my view honestly.

I just want to be taken seriously by doctors. MRI and X-ray results show obvious signs and degeneration. My 48 year old mother also has advanced stage spinal degeneration. Just feel left out in the cold.
Posted 10/29/2012 11:49 PM (GMT 0)
Hi Cryssy and I too would like to welcome you to the forum. As far as your husband goes for not understanding, the big problem is men are the fixers of the family as a rule. Well, he can't fix you, nor does he know how, so that is really probably very frustrating for him as well. I truly believe that the only people that really understand chronic pain is a fellow chronic pain sufferer. Pain is silent and something that cannot be seen by other people. In fact, people that have pain have been viewed by some as being lazy, hypochondriacs and pill seekers. You mentioned the words chronic pain and see how may sets of eyebrows shoot up. Most of us have lost our friends because they do not understand why we can't do many of the things we did before. Have you sat your hubby down and talked to him about what is going on with you?

Sometimes we have to try more than one dr until we find the one that truly fits. Don't give up. I do hope that you can get the help you need.

Just come here and share your thoughts when you to want to talk because this group truly understands. Welcome aboard...Susie

















I am glad that you have been reading about the new rules and guidelines that are in place that the drs are starting to abide by. Its not fair as far as I am concerned, but the bottom line is, I feel they are more worried about drug abusers than about people that live with chronic pain. So many drs are scared to death because of the DEA. I am very fortunate that my PM dr is not intimidated by them and she will not let them push her around. She gets regular visits from them and they come in and do their thing and leave.
Posted 10/30/2012 11:05 PM (GMT 0)
I have had that same experience with M.D.s too, first they talk about getting addicted to the meds second they always tell you about loosing some weight then they might not say directly but in a round about way they accuse you of doctor shopping, I get so tired of it all my last emergency visit I went through the same deal UNTIL they took a look at the X-Ray showing all the screws and rods, then seeing how embarrassed they all were the head doctor ask what meds wold you prefer me to give you, Now if I could only freeze that exact moment the doctors finally realized their mistake in judging




me so harshly Then finally after many hours of waiting for them to give me the meds I needed, ahhhh how frustrating I hope and pray that someday Doctors will have a way of identifying us so we won't have to go through the same rigamoro every time we need to get our pain under control.
Posted 10/31/2012 12:01 AM (GMT 0)
It depends on the doctor, frankly. My grandfather's doctor stood at his bed crying with us when there was no more he could do at the very end. But that breed of caring, capable doctor seems to be fading away and is being replaced by petty bureaucrats who worry more about their licenses and peer review than actual patient care. So many malpractice suits, so many who should have never been doctors in the first place... The guy who took my appendix out, he was the only surgeon on call in the middle of the night (Small hospital, it was an emergency), I wouldn't want him to throw water on me if I was on fire.

Having worked among them, in a hospital setting, it was unsettling to say the least. And my mother, as a retired RN has her own set of stories about incompetence. Those guys paved the way for what we have now. There were great ones in there, don't get me wrong, but my first primary care doc self diagnosed himself into an inoperable tumor. Great bedside manner, and knew when he had to refer me to someone else. But poor judgement when it came to himself.

But it's a different world now. The god complex has been replaced by fear.

OK, rant over.
Posted 10/31/2012 2:50 AM (GMT 0)
Thanks again everyone. Today my headache and pain neuro specialist told me I need to self counsel. Tell myself it's not the worst pain each time because I can't live my life around the pain. While I do agree in some ways I don't think he quite gets that I feel more pain than normal people or I honestly wouldn't be seeing a pain specialist. He didn't deny me meds but doesn't give a lot and still wants me to keep this Butrans patch on because he thinks it should help even though I told him its not helping. Oh well this is what I have for now and I'll live with it.

Thanks you guys!
Cryssy
Posted 10/31/2012 3:54 AM (GMT 0)
I understand. My fiance tries to understand but he honestly really can't get it. I'm 29, managing to work (most of the time) but it is getting harder. Supposedly I have syringomyelia, possibly fibromyalgia as well, but either way nuropathic pain is notoriously hard to control. My medications are a constant experiment of cocktails.
Cheers,
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