Please give me advice on emergency room, really suffering
 

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

OMG I am SO sorry!
 

Unbelievable!
Actually, I'm speechless, but felt compelled to jump on this and say SOMEthing!
I certainly don't claim to know much, but I DO know that doctors take an 'oath' of some sort....
If your doctor is truly aware of the state you are in, there should be SOME way he can communicate with your ER so that they are aware of your condition. The ER needs to have on record your specific diagnostic info, so that when you do show up in a state of emergency, they'll know what they are dealing with. You should ask your Dr the very question your thread asks and he can advise you on a care plan ahead of time.

As far as the Magnesium issue, MrsD would be a good source . She is VERY knowledged in supplement info. She's on the PN forum alot, or she would welcome a private message. Your issue sounds pretty much like a crisis to me, so I'd go straight to the source!

I'm so sorry you are dealing with this

I would hope having a letter or some sort of official documentation from your PM about your health status & dx's would be helpful.

At least it would help to verify to ER personnel that you are under the care of a PM and do have legitimate reasons for needing extra pain control at times.
Especially if ER visit is during off hours or your PM can't be reached for verification.

There should be some way to have something on record ahead of time and verified at the hospital, just in case a ER trip is needed.

Might be just a case of asking the PM office to prepare a letter for you, or to fax it right to the hospital in question.

But it is also a good idea to have something official on your person in case of accidents or if away from home and an emergency happens, then you have the info with you.

Some print up a medical ID card with main dx, meds & drs listed, and carry that in the wallet or billfold.

Jo's right. When I was admitted through the ER for a cardio cath a few years ago, I was out of town without my paperwork, but I was able to call home and get my then 12 or 13 y.o. son to fax a copy of my typewitten list of meds, including specific dosage information along with the name and specialty of the doctor prescribing them.

This when I was too upset to remember half of what I was on.

I was specifically told by an ICU nurse that their opinion of me changed completly upon receipt of that one piece of paper, and the doctor ordered everything on it, except for the Oxycontin/oxcycodone and there he went one better.

Until my old computer died a couple of months back, whenever I changed any prescription, I just created a new document with a new date on top. Now it looks as though I'll have to enter it all, but I was at "ver. 141" when I left off.

i have been to er and had a shot of Toradol and it helped me Alot. loosened me up as well.. My pm dr told me about it.. course. its different for every one. i had to tell the er docs about it. so i have reservattions bout it.. but its your call. but if you hurt that bad, you can go and tell them toradol or morphine or something. its gotta be powerful like that.. keep us posted

I'm so sorry. I wish I knew what to say - but I've never gone to the ER for my pain. When my head pain is really bad, I can't move. The ER is out of the question. I crawl in bed and just have to wait it out. I take my meds, but whether or not they work I just can't tell you. Usually I vomit a lot.

Good luck to you. Hang in there. I hope you have some family to help you.

XOXOX Sandy

Hi, I'm so sorry you are in so much pain. I've been to ER twice. Once with a 911 call because I had passed out for an hour and half, paramedic told my husband he thought I was dead-blood pressure 60/40. I was unconscience for the trip, but I got attention immediately and put in semi-icu -I thought was 4 days,but hubby says 6.
The second time to the same ER, hubby took me-I was in so much pain. After waiting 3 hours in the ER, most of which was in the car laying down, we just left-couldn't get any attention and they said it was going to be longer wait. This was the hospital that had the RSDSA annual meeting last year. It's a great hospital, but I think you just about have to go in ambulance to get straight in. just my opinion.
Please let us know how you are and what happened, I've been checking on you every day. Thanks and hope you get the help you need. Your friend, loretta with big hugs :grouphug::grouphug:

Dear DC,
I am so very sorry you are in so much pain. You sound exactly like me about four years ago. I was in so much pain and after the third time to the ER in a month with two admissions I too was treated like a drug addict in the ER by a terrible doctor. The day after treatment I told my workers comp doc and he told me to call the doc in charge of all the ER's in my area for the hospitals. It helped him to recognize how bad the ER doc was and as the EMT was wheeling me into one of the ER rooms I overheard the EMT telling the nurse on duty what my name is and that I had RSD and she said very nastily "Oh, I know all about her." I was in agony for hours there cause the doc thought I was wanting drugs and I was only doing what my own doc told me to do. It was horrible. I was looking at another site for you to research some info on called www.rsds.org. The web page is http://www.rsds.org/4/resources/pdf/...l_protocol.pdf. They have RSD Hospital Guidelines in case you will be admitted. They are very helpful but I could see the staff saying "Yeah right." And never doing anything to help us with RSD. They don't have a clue as to the extent of our pain. I hope this helps you out but know we have all been there. I remember not being able to close my eyes because if I did I felt I would die. I drove my son nuts during that time and he barely slept at night. I did get some ativan for a cast I had on my foot/leg and that stuff really helped with anxiety. I never had a problem with it before then but it really helped me alot. I will keep you in my prayers tonight. Hang in there. We are all here to support you.
kathy d

Have your PM dr. write a letter!!
 

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!

I can see one bad experience as a fluke but reading all of your unfortunate posts.... this just reaffirms how much our health care providers and system are NOT aware of our illness and what it does to a person..So unfair

Hugz, Kathy

Hi,
 

After the 3rd time of going to the ER, my Dr. just told me not to go back, to just call him at home or at work. I was told it was all in my head. They had a lot of my info on file but it didn't matter, they still treated me like crap.

I think though it doesn't hurt to go once to see if they do treat you and how they treat you. You might run up on a Dr. that knows RSD.

Ada

Thank you so much heres why Ive been missing
 

well i haven't been to the ER yet but its been close, i have made an apt with my pm,, I'm frustrated there too. i am taking your advice and seeking the letter and my pm calling but here is what my pm said on the phone.. if it is during hours come here and i will give you something now i don't think he gets it. he is an hour and a half away I'm talking about needing days of help. the pain has kept escalating and I'm on my third lesion. that is where i have been taking ativan and lying very still praying my lesions don't turn in to ulcers. two on back and one on arm above elbow. this is what happens to me when pain is not controlled. lesions.remember i have a few bad ones when i was in crisis a few years ago. well the lesions get everyones attention. fist they biopsy them at the hospital and then once they are sure i don't have aids they usually treat me. God help us all. thank you all so much I will let you know what happens at pm. I appreciate your post s so much. sincerely dc

SO SORRY YOUR HAVING SO MUCH PAIN. i PRAY IT WILL GET EASIER OR YOU WILL GET AN EMERGENCY ROOM DOCTOR WITH COMPASSION AND WILLINGNESS TO HELP. TAKE CARE DENISE

The problem with PM docs is that ALL their patients are suffering. If they took those calls they'd be working 24/7. My primary doc prescribes my pain meds and is much more flexible than the PM I worked with. Have you discussed a morphine pump with your PM? After multiple hospitalizations I'd broach the topic.

morphine pump
 

thank you for the suggestion of the morphine pump, i was interested in all pumps, but am not a canidate. I had a port for one month and it caused havoc with my body activated full body alloydina and infection my body rejected it. Dr. S said i am not a canidate for anything implanted. Unfortunately. But I appreciate the suggestion. dc

When was the last time you saw Dr. S? Since you were a coma patient and you are in such pain now, why don't you call him and get some advice from his office? And when did you last try the pump? I wouldn't give up on the idea. Never, never dismiss something until you've you've looked at it from all angles. Perhaps you need a different medication in the pump to offset the alloydina. To me it sounds like you've given up on a lot of treatments, but maybe you can't afford to do that because you are so sick.

Keep an open mind. One thing I did a month or so ago was taper down off all my opiods. I got tired of being tired and depressed. I discovered that without my Fentanyl and oxycodone I'm in a whole lot of pain, especially when it rains. So I went back on them, but on lower doses. I'm definitely not as depressed as I was, and the meds are 75% working, except when the weather is really bad, then they are only 50% working. I saved some of my stronger patches just in case I find that I want to use them.

Can you try ketamine again? Does that remain an option for you? When did you go to Germany?

How far are you from Dr. K? Would some infusions help you at all? I don't know what kind of insurance you have and what he is willing to accept.

I'm so sorry that you are having such a hard time. Where is your family? Can you connect with your parents or siblings for a while and try to get a handle on a treatment that is right for you?

I'm just throwing out some ideas because you've had some very sad postings in the last 5 months or so.

Wishing you the best of luck, XOXOX Sandy

even when my PM doc called the ER and said that I was coming in and it was an emergent situation (steroid headache after a nerve block) they refused to offer me any relief. They just ran the CT scan and told me nothing more could be done. Hopefully you are in an area with a better hospital. I pray that your pain level comes down, and that a workable treatment is found for you. Lisa

Thanks for this.

I used to take Toradol daily. Until the FDA banned that. Now you can take it short term, or get a shot in the ER. It's an NSAID. To be simpler, when I get breakthrough pain that my methadone, and the rest of the cocktail isn't working, I take two Aleve's.
Amazing what a little NSAID can do every once in a while.

I hope that you get your pain under control!

pete

Aleve- thanks
 

Pete thank you so much, i will go get aleve today- i would be so happy if something that simple did help- but it makes sense. i cant wait to try it. :) dc

Sandy thank you for your thoughtfullness
 

I'm just throwing out some ideas because you've had some very sad postings in the last 5 months or so.

Sandy thank you, i didnt realize i was posting such sad notes, it has been and remains a very diffucutl time. My breakthrough pain is just so severe it become very hard to take. my pm is wonderful and we are working on it but its a rough go. I did move after my husband left over veryclose to my family and it certainly helps we are all very close.
I can hardly lift my self out ofbed in the am the pain is excruciating. thats new i dread am. I should post and see if anyone else is developing that, i have so much pain in neck shoulder back legs, that its hurts too much to lift my self. Im afraid im headed towards some sort of assisted living. so yes it does have me down. and scared.
I dont know what this new type of pain is, it's year 7 maybe everyone is having it.
and of course financial problems. my ex is not sending enough money or on time.. that's hard

I would love to be back with dr. s but can not afford it. the 3-5 and 10 day outpatient infusions always lowered my pain. Maybe i will write him and see if he knows whats going on, its a good idea, thank you. Sandy thanks for caring and allowing me to go on like this. I was very moved by your concern. please dont worry , i'll make it. ok.its just too much pain right now. im sure my pm will get it worked out. sincerely dc

Just wanted to add, i have been to dr. k his infusions were too high for me and caused severe hallucuinations so he ended them after the first one.(and $2000.00) i tried him because he is closer, i am in orlando he is in tampa. i had the coma in germany in May- June of 2007.
"

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.

thank you Daniella and dr. k
 

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

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..

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

journey with rsd
 

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:

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.

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:

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: