Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-31-2015, 05:32 PM #1
Jerie Jerie is offline
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Anyone beat my record of being dumped by doctors yet? I have been dumped by at least 8 different DRs. I have no PC either and no hospital I can go to. Full body RSD at nightmare and healthcare a joke.
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Old 08-31-2015, 09:58 PM #2
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Hi Jerie,

Geez, that is a tough place to be in.

I don't understand when you say you have no PCP and no hospital to go to. Will no one at all see you?

It is a violation of EMTALA (emergency medical treatment and labor act) to refuse care to someone presenting to the ER. If you are being turned away without a medical screening that is against the law. However, If the ER is seeing you but declining to treat pain it may be because their hands are tied by the new regs.
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Old 09-03-2015, 11:20 AM #3
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Originally Posted by Littlepaw View Post
Hi Jerie,

Geez, that is a tough place to be in.

I don't understand when you say you have no PCP and no hospital to go to. Will no one at all see you?

It is a violation of EMTALA (emergency medical treatment and labor act) to refuse care to someone presenting to the ER. If you are being turned away without a medical screening that is against the law. However, If the ER is seeing you but declining to treat pain it may be because their hands are tied by the new regs.
Both. Saying I need no medical care, saying they will not initiate contact with PM DR. PM Drs not responding to request for help with hosp. ED not treating "CHRONIC PAIN" at the ED. My so called Pain disorder that causes so many other medical issues, like ANS, dystonia attacks, etc. Just drug seeking behavior. I do not have any idea how I will cope without daily pain medication. I have full body RSD. Then they always go back to why don't you just start over with diagnostic process. It's either the you just need a shrink or we don't believe you or you just want meds. I am praying to God for help doing this med free and Dr free from now on. When its out its out. I already dumped Cymbalta, tapering klonopin and ketamine will be no biggy but I'll miss the help. I have some unauthorized opiates I will have to make sure I don't fall back on when the ketamine goes. An internal medicine Dr agreed to treat me if I never requested pain meds. AT least I can manage my thyroid, liver and bladder and gut issues. 3 hr drive. My life is sucking and I am afraid again.
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Old 09-12-2015, 09:15 AM #4
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Jerie,

We are living through a new era in medicine where doctors are afraid to give pain meds. I recall reading that this was going to happen a few years ago, but I did not believe it. It seemed a far-fetched scenario that doctors would deny patients pain relief, but here we are.

Tramodol did not work for me, but it is possible that the dose was too low. I cannot take NSAIDS, they barely helped and ruined my stomach. I know the nurse practioner did not believe me. She told me people take huge doses and are fine. Fine-until their livers fail. She did not want to help me with pain relief-she told me to call someone else.

I am taking neurotin 3x a day 1200mg in total.

When I was going for medical care my sister told me I looked like a drug addict! From the excrutiating pain I guess I did, I could barely bathe, dress, comb my hair or brush my teeth. I still tremble when I sit to do my make-up, but only a few months ago I could not put make-up on or pluck my eye brows. I constantly rubbed my face. How is a person in chronic pain supposed to look?

I was abused by a nurse in ER, who jammed a huge port in my arm as soon as I got there (overnight, never used). I begged her and multiple other staff to remove it, but no one would. This nurse ridiculed my symptoms, she said I had no rash so I could not be having an allergic reaction to the two strong antibiotics I was put on. My stomach was on fire as if a dragon was squirting it with a flame thrower. I wanted to rip my face off and kill myself. I was told not to say this to anyone or they would lock me up. It took hours before they gave me something for my stomach.

They absolutely refused to deal with the pain I was having in my foot, so agonizing I could not walk, yet the records list musc-skeletal as the reason I went to the ER. No X-rays, even though I told them I thought my heel was broken, but I was given a brain scan where an incidental brain aneurysm was found-then I was ambulanced off to another hospital where I was checked over by hordes of people. One neurologist told me to get medical marijauna, but did nothing for my pain while I was there.

During all this I was purging my bowels constantly. I had to keep getting up to use a port-a-potty, when I was dizzy from a lack of fluids and I could not walk. The pain was off the charts.

In retrospect I realize after they found the aneurysm they thought I might need brain surgery and they did not want to interfere with the process, but once they knew I was going to be discharged why no pain relief, why no foot X-ray. I was told I was being sent home in a Johnny without shoes, without a coat, in a cab, when I had no keys and no money and I could not walk. It was a low temp day, after a major snow storm. I cannot believe I did not pass out from the stress.

I believe that I was subjected to this miserable treatment because there is a notation in my records that I am medication seeker.

The neurologist's note: "patient says she would love to take MJ." Hmmm.

Last edited by BioBased; 09-12-2015 at 11:56 AM.
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Old 09-12-2015, 01:57 PM #5
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Quote:
Originally Posted by Jerie View Post
Anyone beat my record of being dumped by doctors yet? I have been dumped by at least 8 different DRs. I have no PC either and no hospital I can go to. Full body RSD at nightmare and healthcare a joke.
Well, rejection by 18 orthopedics count?
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Old 09-12-2015, 09:48 PM #6
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if you go to the er they have to treat you even if you need charity care. bring a pamphlet on rsd and tell them you need something to help manage the pain. if they can't do that then i would ask them to refer you to someone who can. there are pm drs out there who can help you manage your pain with meds, nerveblocks, pt etc. and try to do your own research at home too to find pm dr who can help rsd patients. hope you find some relief soon. i know it's hard but don't give up looking for a dr who can help you. take care.
p.s. i know it's scary when your hurting and you can't find a dr who can help, but keep trying to look for a good pm dr. cymbalta didn't help me at all, but gabapentin does and also a strong pain killer helps that my pm dr prescribes to me. if i were you i would look for a pm dr who knows how to treat rsd properly so that he prescribe the right meds to manage your rsd pain. i also take advil to bring down inflammation that rsd causes me. sending soft hugs your way.
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Old 09-12-2015, 11:24 PM #7
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Originally Posted by RSD ME View Post
if you go to the er they have to treat you even if you need charity care.
I just want to clarify that the EMTALA law covers life threatening emergencies and labor only. An ED is obligated to screen you for anything that is immediately life threatening (ie. symptoms of a heart attack). Once you are deemed "medically stable" they just have to refer you back to your PCP for treatment of a chronic problem. An ED is not meant to treat chronic conditions, and with the change in health care laws we are seeing a swing back to treatment of emergent issues only.

I know that it really sucks when you're in severe pain, but it's just how things are now.

As a healthcare provider, we are monitored now for the amount of opiods we write. It's a difficult place to be in for both patient and provider.

One piece of advice I can give is, when seeing a provider for the first time do not overwhelm them with every healthcare problem you have. Give a short, concise health history and then pick one problem you want to focus on for that visit (ie, CRPS or your bladder issue but not both). Be polite, clean (at least have taken a shower that week, and concise. Don't say negative things about other healthcare providers.

I wish you the best of luck in finding help.
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