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Doc taking me off meds.

Apr 14, 2018 5:29 AM

It's been 14 months since my doctor took me off long acting Nycenta. I still have short acting but it's not enough to help take away the pain. Every month I bring up the fact that my Pain is really bad and that the current treatment plan isn't working. Yes, without them it's almost unbearable. Every month they say the same things: "it's just pain, it won't kill you", "I had chronic pain, but I had a spiritual awakening and am cured", "it's not that bad, you're just drug seeking".

So I finally had it... After 72 hours without sleep and my doctor saying, "they used to keep prisoners of war awake for long periods of time. It caused some to go insane" WTF.

SO I told her that they are not listening and noone in the office cares. I've done everything they told me, therapy, CBT, Acceptance, exercise, diet, sleep routine, etc. Yes, some helps but what I really need is not to have them take me off my meds...But to come up with a plan.

Do I need the meds, no. But my quality of life is deteriorating. Now their plan is to take everything away.

So I got fed up. Said, sure your CRPS went into remission. But mine didn't. When the pain is at its worst, I sometimes feel like blowing my brains out. It just gets so bad.

So she says I need a psych evaluation and they won't prescribe any meds until I meet with THEIR counselor. I said, you're NOT listening. I'm trying to describe what the worst pain feels like because cutting, burning, stabbing, inability to talk or drive doesn't relate well. So now I have to meet with the counselor Tuesday. WTF. She jumps right to policy and procedure. I Demanded that she listen to me and stop with all the "regulations" excuses and policies. If I was going to self-harm...I wouldn't tell them. There's a difference between expressing how bad it gets and doing something harmful. I am not in a place where I'd harm myself. Not only because I love my life and my family but because though it's bad and horrible at the worst, I always get through it. I just want to feel normal.

The appointment ended with, "there's no magic pill, you just need to accept it. You're doing all the right things". Nothing to help with Slee except "we need you to talk to a sleep specialist". Ugh... 12 years of pain and counseling I know what to do. Stop treating me like a new patient.

My other doctor, the one who did the surgery in another state is trying to refer me to a doctor locally who might do a pain pump. Honestly I fee like this might work. No side effects with 1/300 dose. But I just need to find someone willing to help. :/

So tired of the drama. I just want an empathetic and compassionate doctor.

Apr 14, 2018 5:47 AM

So sorry you are dealing with this. It is ridiculous what she is putting you through. I sure hope this other doctor gives you a pain pump. (((gentle hugs)))

Apr 14, 2018 9:02 AM

I hope that you are able to get the referral to a specialist who can insert and manage the pain pump with you.

Apr 18, 2018 12:44 AM

First off- I'm sure you aren't needing to see psych unless it's to scream about pain, in which case, lemme know and I'll join:)(
They have tons of patients, they tend to get desensitized. You just need to find a doctor that can understand you and not just your appointment time. Try small clinics, small pain clinics, maybe- hopefully that'll help. I have heard about the pain pump, just want to give you a heads up that I also read that patients had major issues when they ran out early or there was a problem with a refill or the device malfunctioned, either way, I really wish you luck- if you come up with some pain relieving way, plz pass it on;)

Apr 18, 2018 3:00 AM

I met with the therapist yesterday and the conversation went well. She did the evaluation as my doctor said she would. She does not see a reason I would need a therapist as I have lived with this pain so long, I have more experience and have dinner more research that she does not know what I could gain from talking about it. She suggested two books which I will of course read. After 20 minutes I felt she was empathetic and actually listened. She agrees that my goals are not unrealistic and that I need a second opinion from another doctor in the office or to search for another doctor to prescribe medications which align with my goals.

It was nice to know someone in that office gave a damn. She is also going to tell the doctor they cannot tell me who to see for therapy if that's something I wish to do. At most they can request a consult but nothing more.

I'm beyond furious with my doctor. I had an amazing one a year ago who was in the process of rotating my meds. I'm happy she left to be with her husband but it left me holding the bag ever since as noone is willing to do what we agreed to.

I want to be a functional member of society, work my two jobs without having to take time off. I want to be able to exercise and spend quality time with my family. I want to not argue or get stressed out so much because there pain is so intense. I want to sleep at least 4 hours a night.

Mind you, I'm not saying give me this or give me that. I want pain medications, sure. So that I can pair it with exercise and feel normal.

I get that I'll never be pain free. I Accept that. All I want is to have my pain within a tolerable spectrum. Is that too much to ask?

Going for a second opinion as soon as the other doctor schedules an appointment. It'll be 2-3 hour drive one way but it sounds worth it.

Apr 18, 2018 7:48 AM

I'm so happy that your appointment went well and in your favour. Hopefully, the second opinion doctor will be able to try something medication-wise that may work to alleviate some of your pain.

Apr 19, 2018 5:04 AM

ScruffyCub - your expectations are very high - not many able-bodied people would be able to sustain 2 jobs, the demands of a family and excercise on 4 hours sleep, let alone do it well.

Apr 24, 2018 8:01 PM

I'm sorry for everything you're going through. My son's kind of going through the same thing. I've been on pain medicine for 5 years and I don't know how I could deal with it without it. I believe this whole thing about taking people's pain medicines way is just going to drive people to get illegal drugs oh, they're not leaving much choice to people. I would try and see another pain doctor at a hospital or university I go to the University of Cincinnati hospital pain clinic. They have actual residence that are there to learn and I think that makes for a different atmosphere. As long as I am totally honest and do everything I'm told they have no problem giving me medicine. I wish I could help more I don't know what city you're in but I'm really good at research if I can help let me know. Cheryl

Apr 25, 2018 6:55 AM

I also have CRPS/RSD and have constant burning pain in my shoulder and arm and in my foot. I have recently tried CBD lotion from Colorado Cures and have had some relief. Honestly the first sign of relief and that is after a huge list of medications, 12 lumbar injections, a trial for a dorsal column nerve stimulator and a trial for the pain pump. The pain pump trial was successful for my foot but i developed migraines daily and so they no longer felt the pain pump was right for me. I hope you have great success and that your pain is managable today.

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