NeuroTalk Support Groups - Please give me advice on emergency room, really suffering

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Please give me advice on emergency room, really suffering (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/117086-please-advice-emergency-suffering.html)

daniella

04-25-2010 08:52 AM

Hi. I am so sorry for how bad your pain is. You have been through many treatments it sounds like. Just wanted to say you are in my thoughts. Also for the aleve. I heard on here from Mrs D about the liquid gel aleve and when I take it for my head and body aches it helps to a degree. Not so much for the RSD area though but everyone is different. On the Dr K and the ketamine being too high can't they adjust the dose or was that the adjusted dose? If you want an email buddy I am here.

CZZ74

04-26-2010 05:54 AM

thank you Daniella and dr. k

Quote:

Originally Posted by daniella (Post 648143)

thank you Daniella, i woould love a buddy but im so inconsistent i always feel bad but will email ok. on dr. k. my experience is that , no , hes not into the program like dr . s does and he does not put the other things in the infusion dr. s does to help you sleep, not have hallucinations etc. which is critical for me. it was was too strong for me being awake. i had real problems , breathing and hallucinations. but for a friend of mine who also had coma in germany- his program helps her immensly as high dose is all that does.
Thank you again so much. i iwll email. Sincerely dc

picobill

07-09-2014 01:40 AM

Short and Simple

RE ER's DON'T GO EVER!

My worst experiences with CRPS were the 2 times I had to go to an ER.. Instead check with your Pain Drs office about an emergency contact number someone on call for the bad times 'cause face it ER Dr won't know about CRPS, Won't do a damn thing that would really help till he talks to your Pain Dr anyway.. So save yourself the stress get that contact info then when the Pain Dr says get your butt to this ER they'll be waiting with meds or a shot to help you THEN go to the ER..

Burnbabyburn

07-09-2014 08:51 AM

Jetjock

I could have written this myself, to the letter (the second part of this). AMEN, preach. I totally agree with everything you said and had similar conversations last night using "cancer" as a for instance in the same scenario, though I don't like doing that, sometimes you just have to say it out loud. Odd how your words were almost verbatim for what I said to my best friend last night.

Nice to hear it come out of someone else's mouth....I am sick of hearing myself talk, think...lol ;)

:p

Quote:

Originally Posted by jetjock1 (Post 635581)

Jo*Mar is right. If you have a document from your pm doctor you have a much better chance for legitimacy. I have been in the ER many times and the letter has been a god-send. They will keep it on file. It just drives me nuts at how poorly we RSD people get treated. If you went in and told them you have cancer and the pain was excruciating they would be all over it. Most ER dr.'s are clueless on the facts of RSD pain. Another thing you should try if it happens during the day is have your PM doc call ahead for you. Then they will be expecting you. You have to be pro-active in making sure they understand you are legit. (Why do we have to prove our legitimacy all the time!!!?????) Arrrggggggh!

meg315

07-29-2014 09:23 PM

journey with rsd

Quote:

Originally Posted by CZZ74 (Post 634174)

Hi Everyone, Please help me. I have been many place on this 7 year journey with rsd but none as dark as this.

I am back to pre coma pain and then some,

I am hanging on by my fingernails day by day, trying not to dial 911 each day because I know they wont know what to do with me when they get me- but it is inevitable.

please send advise for emergency room. What can I do to get admitted for a few days of iv pain medication? My meds have not been working for several weeks now.

My pain management doctor has tried everything and almost killed me last week with a magnesium intravenous infusion which I had an allergic reaction to-
my brain was literally on fire for over 10 minutes, I kept calling out to my sister to get the doctor, my brain was like lava-

thank God she was there , I think I might have been brain dead other wise.

Please please give me your advice about the emergency room what to say to get care- they usually think i am drug seeking when they see my list of meds-
and please share with me if you have every experienced the brain burning episode,

there was very Little on the Internet about it except, mercury poisoning.

I do know that my body temperature had dropped to 91 degrees during the infusion.
(my pm was watching it with a tape)
so i had hypothermia. my brain was literally burring.

thanks so much for reading this and thank you in advance for helping me. dc

I am so sorry for your pain. Cant you just tell your doctor your pain is not being controlled and you would like to be admitted for pain management till it is under controll?

eevo61

07-30-2014 07:49 PM

Quote:

Originally Posted by meg315 (Post 1085892)

I am so sorry for your pain. Cant you just tell your doctor your pain is not being controlled and you would like to be admitted for pain management till it is under controll?

I see still I this days ER are not ready for us ,rsd patients, I was ther few months ago and got the bad experience dr dint know rsd even when I gave her a print out to read, it was late Friday she told me to wait for Monday and contact my pm dr,was awful and did not offer me anything for my pain ,I got away with a toridol injection for my headache and a bill obviously of 1000 dollar with few more dollars on it.
Best thing for us to do is educate those ignorants and also write a letter to complaint ,why Many times a bill is well documented when our visit to ER is not.
Hope this department gets some improvement and we can get treated they way we deserve and need.
Best wishes to all and gentle hugs,Jesika .:grouphug:

Firedancer79

07-31-2014 05:54 PM

You know, I asked the same thing to my neurologist last week. I'm in really bad shape. He said he couldn't admit me because I could be I'm there months, and then you have to go home anyway.

I don't think he understood that I was asking about it because I feel like I'm being tortured, I even dream about my pain.:(
So, I just don't think doctors are aware of just how painful this can be. It's full body for me and its more than I can take.

Sorry, for the gloom. I'm in a very dark place right now.
But, I hope this finds everyone ok.

Firedancer79

08-01-2014 09:16 AM

Ain't that the truth? Lol I'm glad to hear someone else say it too.
Why is it that the most painful condition on planet earth isn't treated like a real, legitimate condition? :confused:

dealingwithtos

08-07-2014 09:09 AM

ER Visit

I agree with Jo also. I was just in the ER for a flare and the doctor told me "I'm an ER doctor - I don't treat chronic pain." Very frustrating to be in pain and not have someone who is compassionate and understanding. They will give you pain meds (or they did for me) and that's about it.

I also agree with one of the doctors saying to not go back - if that's an option.

So sad that that is our reality. Good thing that there are people here that understand and are willing to listen to us vent. We need to stick together.

Wishing everyone a pain-free weekend. :grouphug:

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