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Fed up with level of care and Medical staff not Understandinig pain!!

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Unread 12-31-2012, 12:14 PM   #1
CRPSsongbird
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Angry Fed up with level of care and Medical staff not Understandinig pain!!

First off I have CRPS/RSD...considered to be the "worst" Cronic pain syndrome there is.....woo frigging hoo....

Grr. Ok I'm am ranting a little but I am so fed UP! I truly wish they could feel what I do, and then be asked to wait for different medication. But you can only get the medication if you get an appt with your PCP. Who has been on vaca for the last 2weeks, and is booked solid for the next coming week!!!!

I had a bad reaction to Lyrica. Though it did help with the pain, at least to the point where I could tolerate the pain a LOT better, I couldn't very well keep vomiting and being so fatigued that I felt I would fall asleep standing up.
The other doc I saw at my Doc's office Friday said he wanted to wait before giving me anything else for pain until the Lyrica was out of my syst6em. This made me nervous but I understand why he did, it made sense not to make anything worse! I had a LOT of pain this weekend, but I managed.

Even when I HAD to clean house because no one had actually mopped the kitchen or bathroom since before I started having these problems. Oh they spot mopped and swept but I guess no one else knows how to use it. I was also caring for my youngest daughter as she had come down with strep and i was up 5-6 times a night caring for her (she's only 7).

SO I was seen Friday for medication reactions and was told to stop taking the Lyrica. And To call back and get a appt today so I could start Cymbalta. So all weekend I dealt with it, only having Amitriptyline at night which doesn't do much as far as I'm concerned but dies help me sleep a little or at least STAY asleep once I can fall asleep....

I call today and guess what NO appt available.....I would have to wait till Friday or next week before I could be seen to get the medications.....

I seriously wish they could feel what I feel and then be put through all of this and told to "wait". The funny thing is I'm not even asking for "controlled substances" just for now at least the Cymbalta.....

Though I am extremely hesitant to try it based on the reactions I've had to Gabapentin and Lyrica. I mean yes they did help with the pain a bit but the Side effects were SO hellacious I could barely function. I feel like I either have to be in EXTREME pain or a pretty painful and vomiting or feeling like sleeping for 3days straight or losing hair or being so weak from the vomiting/fatigue you can barley tolerate standing......not to mention you work Full Time for not much over min wage so you need ALL 6the hours you can get to care for you kids, then your supposed to come home cook dinner and clean house all while finding the energy and strength to smile and read to your sweet 7 yr old. And I have been trying to hide the pain I'm in from her, so she doesn't feel scared.....

I really wish they could understand more so they would try and DO something about it!!!! I mean I feel like I tolerate the lion's share of the pain on the medications, and then when I can't take it or have to stop the meds the pain starts going through the roof!! I know it won't kill me but aren't I supposed to be allowed better quality of life???? Isn't that why we go to the doctors??? To get better? And to all those "junkies out there who faked illness/injury to get "controlled substance" drugs GO JUMP OFF A BRIDGE!! Thanks to you people chronic pain sufferers like myself have to go through every "new" medication or treatments that have horrendous side effects before they will prescribe strong enough pain/narcotics, to actually help you not want to cry from the pain!!! I am starting to see why people woth chronic pain get depressed!!

When doctors look at you odd because you are trying to tell them what you are getting isn't strong enough or you can not tolerate the side effects, and think you might be a "drug seeker". Well in this case YES I AM SEEKING IT, you feel like screaming at them to HELP ME and make the PAIN STOP. But you don't on fear of having what little medication you have be taken away, or being labeled as an abuser. I am fed up with other people not understanding that the little thing can set off you pain. Move you finger or wrist in the wrong way, or pick up a silly cup of coffee can send your pain to such heights you're trying not to cry!!!!

But oh yes I'll wait because I HAVE to. Because you don't want the state board to question why you're prescribing a constant "controlled substance narcotic" to someone who doesn't make six figures a year. I have small but conclusive PROOF of my condition as well! SO they know it's not being "faked". I am so exhausted, hurt, frustrated, confused, and ****** off!

I know all of you can probably related to some or all of what I am saying. And I don't really have a question I just needed to get this all off my chest. I am sooo SICK of doctors thinking that it won't "kill me" so I can just WAIT!



grrrrrrrrr
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Unread 12-31-2012, 12:26 PM   #2
ginnie
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I really am sorry you are in such pain. Go to the ER if you have to and holler if you have too. You have to find those physicians that know about Cronic pain with RSD or CRPS. Just an MD or PCP is not enough. Have you tried a physiatrist? Can you PM me where you live. Maybe even post so those on line can recommend someone in your area. You are right, your quality of life is being compromised. Maybe it is time to let someone in the medical field see you with a hollar or two. I did cry to my doctors Emily. I did find a doctor who could help but it took a bit of doing. It can be done and you can get some quality of life restored. Pain specialists do allow narcotics if needed. There is also an IV type therapy, and suppliments. Please keep seeking better help. ginnie
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Unread 12-31-2012, 12:44 PM   #3
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Quote:
Originally Posted by ginnie View Post
I really am sorry you are in such pain. Go to the ER if you have to and holler if you have too. You have to find those physicians that know about Cronic pain with RSD or CRPS. Just an MD or PCP is not enough. Have you tried a physiatrist? Can you PM me where you live. Maybe even post so those on line can recommend someone in your area. You are right, your quality of life is being compromised. Maybe it is time to let someone in the medical field see you with a hollar or two. I did cry to my doctors Emily. I did find a doctor who could help but it took a bit of doing. It can be done and you can get some quality of life restored. Pain specialists do allow narcotics if needed. There is also an IV type therapy, and suppliments. Please keep seeking better help. ginnie
Thanks I live in *. In my state the "controlled substance" or Schedule 1 or 2 narcotics are very hard to get for a pain patient.
Even with a valid condition or illness, unless you have terminal cancer they don't want to prescribe you things like Oxycondone or Oxycontin (which I've never had). And if you try to complain "too loudly" they just label you a drug seeker and refuse to see you, I haven't been refused to be seen yet but I have been trying to be as patient as I can. I go to a low-income clinic and they get TONS or abusers in so it's hard for them to help us true pain patients, and I am seeing a physiatrist but they're trying to keep only one "prescribing" doctor.......That would be my PCP. Who apparently thinks 1 tramadol 50mgs every 12 hours is enough.....which it isn't and I've told him this.....so I'm at a loss......*admin edit*

Last edited by Jo*mar; 01-28-2013 at 04:54 PM. Reason: Language Guidelines & loc edit per req
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Unread 12-31-2012, 01:07 PM   #4
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Emily--Im truly sorry this keeps happening to you.-I just wish you could finally find a good doc who would become advocate to help you keep the pain under control. Im sorry your in such pain!!
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Unread 12-31-2012, 03:27 PM   #5
ginnie
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I have had a bad word or two bleeped out too. Don't worry about it. I know about this whole country trying to pull back on prescribed narcotics. It is because of the amount of abuse there is. My state is one of the worst for pain pill abuse, but I did find a doctor despite that. You have to keep up the search for that compassionate doctor. Tell them to go ahead and put you in the hospital, maybe there, someone will listen. I really didn't care what the doctor thought of me. I had to get some help and I sure spoke up. Posting near where you live is a good idea, someone may give you a heads up where you can get that help. Keep hope alive. ginnie
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Unread 12-31-2012, 03:45 PM   #6
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It is always a horrible shock for a first time serious illness/trauma patient to discover the inadequacies of the medical system we have. The lack of empathy and caring can be jarring.

This is why NeuroTalk is so special. People can come here and find out what others have done, how they have found or not help, and if other venues may help with their chronic medical condition.

I am always very grateful for these forums.
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Unread 12-31-2012, 04:40 PM   #7
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agree with you 100% mrsD

Emily...I empathize with you

the medical system we have today treats physicians as drug dealers and state "gestapo" reports (aka state pmps, ie., state prescription monitoring programs) treat all patients as crooks 1st

physicians are scared to death to treat pain adequately "as the textbook states"...i.e., titrate to effect because their practices will be flagged by state medical boards, state pharmacy boards as well as the DEA by how many controlled substances they prescribe not to mention high dosages and quantities prescribed IF they vary from the "norm" of other physicians

so the legitimate chronic pain patient suffers and will continue to do so

buchu legitimate physicians have lost the licenses, have had their assets seized by the feds, and many are rotting in prison because all they did was treat pain according to "what the textbook stated" which is the LEGAL standard but prosecutors and medical board members mistakenly use the "norm" standard to prosecute and persecute

bottom line, physicians who prescribe controlled substances for chronic pain patients are in a continuous catch 22 situ
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Unread 12-31-2012, 04:59 PM   #8
CRPSsongbird
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prosecutors and medical board members mistakenly use the "norm" standard to prosecute and persecute....



Soo true! And as well CRPS/RSD or most chronic pain sufferers know we are NOT in the "NORM" not even close!
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Unread 12-31-2012, 05:07 PM   #9
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Emily
I have posted a reply in the CRPS forum.
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Unread 12-31-2012, 05:21 PM   #10
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You said the complete truth how it really is. ginnie
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