So, Friday night my RSD got really bad and I had to go to the ER. I was in EXTREME pain, couldn't move or speak, was SOAKED in sweat, shaking for hours that looked like a seizure, trouble breathing, etc. This lasted from about 10pm to 4am & was not letting up at all. It kept getting worse. So, I went on to the ER. Normally the ER gives me iv or im dilaudid, iv ativan, and sometimes phenergan or some other random medication. I will tell y'all what my parents remember of last night bc I was out of it bc of pain. When I got there & doc walked in & saw what condition I was in, his first response was "what do u want?" My parents thought that was very rude & went on to tell him what is normally done in the ER for my RSD flares. Doc said he read all my records for a couple months back. They were trying to explain RSD to him & answer his question of why did they think I was in a flare. They told him it could be a number of things. One being barometric pressure change. Mom related it to how someone w/ arthritis gets affected from weather changes, just alot more pain. Doc said that he has never believed that barometric pressure changes ever can cause pain. What an idiot, this has been scientifically studied and proven for a long time. All computers at the nurses station had Facebook pulled up. Then he goes into talking about how the last several tests I had had on random stuff had came up normal. My lymphnode biopsy, random stuff like that. My RSD has moved internally so it causes all kinda unexplained problems in my body that are eventually attributed to the RSD. The way the doc said how these tests came back normal (even though I have way more tests that were not normal) made my parents feel like he was saying i was a hypochondriac or something, just making this stuff up. Nurse started an iv & gave me Ativan to try & stop the shaking. Then he tells my parents that he is not gonna give me Dilaudid. They said ok then give her a non-narcotic pain med or something. Doc said that he thought my pain was "cognitive", which to me means made up in my head, despite the undisputable evidence of how much pain I was in. So, parents asked then what are you gonna do to help her? He said well I can give her more iv Ativan & iv Vistaril & just knock her out, is that what you want? Parents said they didnt wanna simply knock me out, they just wanted me to get some pain relief. He said he didnt wanna give me a iv pain med bc when it wore off I would have rebound pain & would be in even more pain when it wore off??????? Never happenned to me!! So, since it was 4am & I had not taken my bedtime Oxycontin, he gave me an oral dosage of that. It's extended relief though, so no help there. I had been so bad off for so long that night that it was time for a dosage of my instant relief pain meds too, but he didnt give me any of those. He came back in to see if the iv Ativan had stopped the shaking & it hadnt so he gave me another 2mgs. After that kicked in, he asked me how I was feeling. I said shaking has gotten better, but not stopped, but that I was still in alot of pain. So, he told nurse to give me im shot of Vistaril in my hip. Vistaril is basically Benadryl so no clue what he was thinking there. His earlier statement of do u want me to give her ativan & vistaril & just knock her out.....didnt work. May have been bc I take a high dosage of Vistaril 3x day for Anxirty, as well as Xanax. He knew what meds I take. So, basically, I went in to ER to stop the shaking & get some pain relief so my other symptoms (breathing, sweating, etc) would get better. I left wide awake with 2 dosage of iv Ativan, im Vistaril, & oral dosage of Oxycontin ER that I take anyways. I was nauseous from all the pain, but he wouldnt give me anything for that. So, when I got in the car, parents gave me oral Phenergan & Oxycodone since I was late on my dosages anyways & he wouldnt give it to me for some stupid reason. So, this is just another story of my adventures with RSD and the ER. Got home at 7am and slept til 10:30pm when my mom woke me up. So, now it's 2am & I am wide awake & in alot of pain still.

FireG,
I suggest you speak to your usual doc, and have a 'plan of attack' ready for when you get flares. Plan in advance, and avoid the entire 'drug seeking' attention and negativity that you get from an ER.

I hope you feel better!

Pete

Hello firegirl,

Im so sorry not only for your flare but for the treatment ( or lack thereof) that you received in the ER.

I do have a couple of suggestions that may help if this ever happens again: Have your pain management doctor and/or your primary doctor write a letter to the ER dept. in your area letting them know that you have RSD/CRPS and in a flare you will need xx meds. My docs did this for me after a similar situation happened and that doc actually thought I was just seeking drugs because I had told him what specific med would work, grrrr ER doctors. I do understand that ER docs get so many peeps who are just seeking but they need to realize that not everyone is. My letters were in my file the next time I had to use the ER and it went so much smoother and I didnt have to spend hours there.

The next thing I would do is have you and your parents set up an appointment with the Risk Manager at that hospital and let them know exactly what happened to you. I used to work in RM and they do listen and take things seriously and they will talk to that ER doctor, hopefully making him a tad wiser.

No one should be put through what you went through last nite. I sure hope you are feeilng better

Dee

I'll 'third' the motion.......please get your pain management doc to write a letter to the ER (and you should have a copy too) saying he wants x, y, and z done when you go to the ER with a flare.

I agree totally also , a back up plan in writing from PM dr for the extreme pain times.
with his # in case of verification /questions - but if it is set up well & with co operation with hospital manager in charge of ER should be no problems.

Or PM could rx special meds to cover for only those really bad times??
Probably would have to have a very high trust level for that sort of thing and I don't even know if they would do it that way...

Maybe that Rx would be held at your pharmacy and they call PM to verify -if you are in dire need?

How do others of you cover those really bad flare med wise?
Do you have a back up plan other than ER?

I already asked my primary doc for a letter like that. He said no. Said he cant tell another doc what to do. Says that once I go to the ER, I am temporarily the ER docs patient, therefore ER docs decisions. Also, my primary doc gives me 20 Dilaudid a month for flares, but Dilaudid doesnt do much unless in iv or im.

I am so sorry for what you and your parents went through. IMHO I think you need a new PM doc.

What about treatments? Have you done blocks? Have you tried to get access to lidocaine infusions or ketamine infusions?

It sounds like even with the meds you are on you are still having a really rough time. I'm so sorry. It took more than meds for me to start feeling a bit better.

Don't ever, ever give up trying to find a treatment that helps you. I wish you the best. Sandy

Dear Firegirl

My heart goes out to you! You have lived all of our worst nightmares! what if my pain gets out of control, will the ER help? I have up on me ER. Before i was diagnosed with RSD they would look at me like a druggie! it was SO upsetting. Now i dont even go to a pain clinic because i didnt like the doctors. My primary care helps me manage it. He wants me to go check out the ketermine infusions, but i dont feel good about it and it is 2 hours away from where i live, would be very hard for me to drive there.

PLEASE ask your pain doctor to right a plan of action for the ER, if they wont find a new PM clinic. they some how forget we pay their salaries. if we arent happy, we can find a new place that will appreciate our money!
Blessings
Lori

As has been said. This situation needs to be dealt with before it happens, and it needs to be planned for.

Here's how my Doc works it.
I have a 'serious issue', I call him. He sends me to the ER, and, when I arrive, they're ready for me. If they need to converse with my doctor, (a Wonderful neurologist), They can and will, immediately! (I simply cannot, will not trust PM doctors!)
They can get him on the phone immediately, but, they usually know the deal, because he's already told them!

What a cool set up, huh?
But,
It's been almost a decade since I've needed to go to an ER, since my Doc has done one better!
He asks, that I 'save' some meds on 'good days', and that, I surely do!
So, that makes ME be responsible, For Break Through pain.
What a difference that makes, Too!

Hope all are well!

Love,
Pete

asb

Dear Pete,

You are lucky you live in PA where your "neurologist" is actually educated in the field of RSD. It is literally IMPOSSIBLE to find a neurologist that knows ANYTHING about the subject in my area. I have been to at least half a dozen doctors in RI. The last neurologist I saw wrote that he thought my pain was due to depression and my ears were messed up (I have an intolerance to noise) because of the Fentanyl I was on. The guy was an RSDer's worse nightmare come true...

As to the 2 docs that finally TREATED me (not just threw drugs at me, though I do use those also), the first trained with Dr. Daniel Carr at St. Elizabeth's in Boston and was a board cert PM and Anesth, and the 2nd trained with Dr. S in Philly and was an Ostepath in South Jersey. I loved them both. If it wasn't for them I wouldn't be where I am today, because they both cared about people with RSD.

Just my 2 cents - I think its important for everyone to not give up on trying to get the blocks, lidocaine infusions and ketamine if they can, and to work at the OT and PT. It took me MONTHS of fighting with insurance companies and sitting on waiting lists, but in the end I got what I wanted. It just takes a lot of determination!! And patience....

As for the ER, when I get really sick I just can't move, except to get between the bathroom and my bed. I would never be able to get there...my migraines are too intense. You'd have to knock me out first.

XOXOX Sandy