Chronic pain 'syndrome'..WTH?!!

I am feeling vey low. Please..a reply from someone would really help. I am at the end of my hope line to be honest..):

Hi Cindy....Please don't think that we don't care about you...there are times on the boards where it is a bit slower and that is during the morning hours on weekdays and weekends. 

The Moderators, as well as all of us on here are chronic pain patients just like yourself.

I never got the chance to respond on your other thread you posted about a week or so ago but I just went back to read that one too.

I appreciate your honesty about being a recovering addict and trying to get the appropriate care for your crohn's pain.

I would have to say that going to the ER so much is not going to get you the best care as they are only there to treat emergent situations and then send you on your way to your regular Dr.

You say that you have an appt. with your PM in the next week. Have you decided or have you already talked with him about being a recovering addict? Your other post mentioned that the last time you got a prescription for Norco you flushed them down the toilet after taking some and getting too loopy and for fear of your addiction.

This is why I would be honest and straightforward with your Drs. so that you can still get chronic pain management, but they can also help you monitor things so you don't fall back down into that lifestyle again.

There are different types of medication that can block the euphoria from opiates. I can never remember if it's Subutex or Suboxone. Or there is the Butrans patch...This helps you with your pain as it is still an opiate but it works differently in the receptors in your brain.

That is good you are seeing another specialist in Chicago coming up soon. It's too bad that the surgeries haven't helped take care of your issues as many people have success with the resections and taking out the diseased portions.

Maybe you will have luck with the Cimzia medication...And I will pray that the specialist will have a better plan of action for you.

It's certainly very difficult both emotionally and physically with chronic pain. Many times Drs. will suggest seeking out therapy to help us deal with the emotional side of all of this. So I wouldn't take that as they weren't believing you are in pain. Anyone can look at all your surgeries and treatments and know that you are trying to find treatments to live a better life.

Keep us posted on how the appts. go!..

Post Edited (Snowbunny21) : 9/6/2012 8:49:17 AM (GMT-6)

Thanks so much you all for responding. My pm doctor knows I'm a recovering addict and in detail. He also knows that I am very active in a twelve step group and I find so much support there. I wasn't insulted by the er doctor suggesting I go to a therapist. I'm all for therapy and feel it helps me deal with what I go through. My therapist called me a few days ago when I reached out to her and she told me she believes I am very strong. That helped too!
I usually go to the er when I feel things have shifted and don't know what to do.like dehydration, any change in pain that doesn't feel the norm..ive had several obstructions so I admittedly kind of freak out.
I think the problem too is I don't believe my gi doctor is taking me seriously anymore. I feel she thinks she has done all she can do and doesn't know what else would help me. I had to push her to switch to cimzia. I'm not sure why she hadn't thought of this before as I have had times when the meds just don't work anymore..my theory is my body adapts to it.
I'll be honest..as I am.. With my pm about flushing the med. not the wisest choice but I just don't want to relapse. I have to guard my recovery relentlessly and somehow treat the pain. Not being able to take anything other than Tylenol and narcotics is limiting. I had even considered an scd if it would help but I don't think he is for it so much.
I'm not sure why he prescribed a short acting narcotic. I can't really afford subutex and will not go on methadone. I have too many friends who used methadone and found getting off it a nightmare. But there has to be other options.
Any pain is hard and I know you all deal with so much! Visceral pain is pretty rough and not easily treated. I've had back pain a long time ago and that was very hard but thank goodness a discectomy and loads of pt afterwards left me with no real residual back pain!
Thanks again..sorry for the impatience..hopelessness is a hard thing to handle isn't it!!

I agree with krw135 about looking for another GI, this does not constitute doctor shopping and from one addict to another people in the rooms are not doctors and sometimes can really hurt with their "opinions" about medication, or that could just be me, I'm really frustrated right now trying to explain to all my friends that when i say I'm sick, I mean ill not insane. But enough about me, good job refusing the methadone and believe me subutex is the same thing, it a lower dose of oxycontin, which I am sure works really well for all you "normies" out there but i know I count how many IBU's I take in a day, per week, I can tell you how many are in what mg in what bottle, where to find it and exactly what the bottle looks like.
Hang in there girl, it has to get different

Hi Cindy, welcome to hw. I am sorry you are hurting so much right now.
Wow that is a lot of abd. surgeries. The pain must be aweful. Have your doctors mentioned an ostomy at all? I do have some paediatric nursing experience and did see many kids do so much better once they got an ostomy.
I sure hope you can find the answers that will help you. Take it one day at a time, it's all we can do. Hang in there and keep posting with us.

suzane

I hope this is your answer cindy. I am glad you have these appt with new docs. That's my thought too, an ostomy could help you so much.
When are your appts? I wish you much luck and look forward to hearing what these doctors have to say.

Take care
Suzane

Splash dancer,thank you so much for your kind words and thoughts my way!i realize this is not a forum to get medical recommendations. And I am so grateful for this forum for the boundless empathy and nonjudgmental stance. This means a lot to me! I felt shame for a number of years being in recovery and trying to find my way through treatments with pm doctors. Some have been fantastic..others..not so much as is the case with all people.
For me..and this is just me..I have an admitted fear with long acting narcotics. I was on them for about 8 years and spent most of that time in bed or on my sofa. I now realize that the doses and treatment were not good for me.being over or under medicated severely hampers a quality of life and isnt necessary!I think it just takes some trial and error to get the right pm doctor and the right combo of both medicine and non medicinal ways to help pain.
I did pretty good with physical therapy until I couldn't go because of the dreaded diarrhea! It's hard to understand that life could be hampered to such a degree with this issue alone..but it can be..
Thanks to everyone of you who have offered your support. When I have felt despair and no hope anywhere on the horizon..people like you all come along to help stop that spiral down!!

Post Edited (Cindyt) : 9/7/2012 12:15:15 AM (GMT-6)

Screaming eagle..thank you for the welcome to this forum!it has truly been a godsend for me over te past week or so..
I am going for two consults for second opinions..one with a colorectal surgeon just to see what options exist and to Chicago to a great IBD clinic to see if there's something I'm not doing that I could be doing.
I have also given thought to exploring residential treatment programs that are for chronic pain and those with a history of substance abuse. I feel to look st one without the other just isn't good for my care.
I just got my rocrds from my current gi doctor which confuse me and I'm a nurse! She's not judgemental at all and admittedly my labs are fine, but the cat scans and colonoscopies show disease.period. Which she had said I was in remission. This was pathology reports so it's fairly objective I think...path reports showing active disease.
I'm a complex patient and I know it!i always have been where crohns is concerned. It doesn't just raise its little head to scream'HERE I AM'!
So I will be vigilant and go to these be consults. And continue looking into the program for chronic pain and addiction issues. I get very discouraged sometimes but mostly now I feel motivated to DO something positive. I see my therapist today..oh!in the hospital admissions,the admitting docktr 'diagnosed' me with anxiety disordr..that's different..given I don't HAVE an anxiety disorder!!LOL!!depression,no doubt..anxious when I have pain..you bet..but not a documented disorder and that whole chronic pain syndrome thing..it has basically says ppl with this 'dramatize their pain,are dependent on narcotics..I don't take any..basically..a whiner!!
I feel one day the health care providers will experience a life changing illness that may change teir personal perceptions..I know my own illness and struggle with chronic pain did. I always liked caring for clear cut acute very critically ill patients. I thought chronic illness was too burdensome and difficult to treat..guess what. I am now a chonju ally ill patient!i find compassion and being treated with dignity go a very long way. If a provider treats me like a leech sucking off health care.a parasitic entity that just wants drugs..my shame level shoots up which does nothing for te pain..
I went to a different er last night. I had to wait longer as its a university hospital but was treated so kindly. I couldn't thank them enough!which made me realize I don't have to allow anyone to treat me like a parasite..I'm a human being!
Thanks for allowing me to vent..and vent!!

White beard..thanks for the welcome and empathy!!yes yes yes!!i am coming to the IBD clinic at the u of Chicago were I was first officially diagnosed.They seem to be a top leader so if I'm complex,I'm sure they have seen even more complex patients than me!that gives me some hope really..
D is about the worst isn't it??i don't mind if it's controlled and not so painful..and the bleeding isn't like a blood bath! Even the bleeding doesn't get me going so much anymore!
I even think an ostomy may not be the worst of things anymore..kinda sad huh??
I haven't been able to practice since 2002..I miss it and hope I can get these issues sorted so I can return to work or school or both..I figure I have done enough research into gi to become a nurse practitioner and specialize in it!
Take care!!c

If thats the case, then I guess we all have Chronic Pain Syndrome. Who wants to hear that. I mean Really!, we come to the ER and now its the pain is all in your mind. Thats crazy, but then again this is America, the home of the free and the brave.

I hope and pray you will find relief. I'm so sick of others telling us when or how much we hurt. NOBODY knows how you feel but you.

I hope you find the help you need soon!

Hi - I'm new here!

I've been fighting this war for a long time now. My current doctor is providing relief - but I have yet to have the right amount of milligrams.

Being honest here - so please don't get mad at me - I'm not sexist or racist - that in mind-

If you have an Indian ER doctor you will not usually get any narcotics. I believe where you come from makes a huge difference on willingness to prescribe.

I got hurt when I fell off an airplane. (I am a pilot- or was, all depending on if I ever get better) , I had serious pain before the accident from my scoliosis and degeneration issues. Before I fell my pain was spiking to 8/10 and sometimes higher, but would get better quickly. After I fell my entire scale was rearranged as my pain was worse than anything I ever imagined before. Those pains before the fall at 8/10 now I'd rate 3/10 - and I had a lot of pain in my life before this accident. I had kidney stones and I was crushed between a truck and airplane. This new scale is truly terrifying.

I've studied pain since I've been hurt since I really can't do very much -

What would you think if a patient told you they were taking 850mg's oxycodone per day? Do you think that's too much? How much do you think he should take? Does he have a problem?

The number of mg's means nothing - but that is all today's doctors even look at. They are prejudiced to the mg's you are taking just as you felt about the guy with 850mg's per day. We have to stop the stigma.

Opiates are supposed to be titrated for each patient. The dose should progress a little every two to four weeks until the maximum pain relief with the least number of side effects is found. Once this is found - a patient is very stable and may not need an increase foe years or even decades.

A patient should have enough medication to work, to stand, and have extras at the end of the day on a good day. Most of us do not have such experiences. We usually have to cope with what we have and are very limited with what they can do.

I want to find a doctor who will titrate my medication properly. I live in Chicago suburbs (northern). Do any of you know a doctor that titrated medication properly? Please contact me - I'm at the end of my rope pain wise - my doctor is not comfortable upping my meds - can you help me? I don't want to live in pain most of the time. And have enough meds to work so I can support my family (wife and two kids)