Question: please read, too long for title field | Arthritis Information

 

So, have any of you fellow sufferers ever had to resort to calling 911/an ambulance with regard to a severe flare?  I mean SEVERE as in words cannot describe it.  I did this Monday in the wee hours and am wondering if I'm some kind of kook, or if people with RA do not call ambulances, or if my local medical personnel are just not informed.

Any thoughts, feedback would be appreciated.

In short, I had a great day Sunday but felt a little achey before bed so took half an extra Prednisone with my Voltarin.  Two hours later I awoke with severe chills and a "lockjaw" feeling, wrists were straining against my braces and hands so swollen I had to use my teeth to rip the velcro straps open.  I progressed through various stages of flu which I'll spare the details ... but the RA symptoms were insanely through the roof.  I was alone (my husband works grave shift and is not allowed to have a phone on him).  As the clock ticked my joints swelled and arms and fingers, etc. began to curl or splay in weird directions.  I could not walk and had to crawl with one leg behind me to the bathroom.

Around 2:45 a.m. I struggled out in the kitchen but could not reach my meds or even open them.  I knocked the cell phone off the counter and decided, since I can't reach my meds and take them all and end this, 911 is my only recourse. 

I was screaming and delirious with fever and pain.  I've had a baby and had a hard time delivering my pride of my life, but those two nights in labor do not hold a candle to the pain I was feeling.  Anyhow, a cop shows up, tries to administer oxygen but I'm screaming too much and he is cowering in a corner of the couch like "what is wrong with this madwoman."  The ambulance arrived and they expected me to walk across the street.  They strapped me in some kind of chair and had to keep putting me down to readjust (I weight 150 pounds but three guys had a hard time with me??).  Every reset was a crucifixion.  I was out of my mind in the ambulance and in the ER.  The nurse who came in to insert an IV yanked my arm and yelled at me "you don't understand" and I said "You don't understand, I can't move my arms I'm in severe  pain."  Finally a doctor came in and they put fluids and dilaudid in the IV line and a nurse helped me swallow Motrin for the fever.  Three hours later they literally kicked me out into the waiting room and by that time I could call my sister to come pick me up.

My husband has made arrangements with work that he can keep his cell phone hidden in a pocket on vibrate in case this happens again.  I'm doing better, tanked up on Prednisone, anti-nausea pills and painkillers. 

However I am feeling like the state I was in is not me.  I was acting like a raving lunatic or maybe some street junkie freaking out for drugs.  The ER people and the EMTs seemed to have never seen a  person in severe RA flare.  In my 15 years with RA I never experienced anything like it myself.  I don't know what to think.  Has anything like this happened to anyone here?  Is calling for help because of what I went through unheard of?  I literally screamed just trying to move my blanket off.  I don't know. 
That sounds awful what you went through. I've not heard of a flare hitting that fast, that hard, but you know with RA , things are always unpredictable. It's hard when others (nurses, paramedics) don't understand what you are going through. I hope today you are feeling better. I know that doesnt answer your questions, but if I were that paniced and in that much pain, couldnt get ahold of my husband and didnt know what to do , I probably wouldve called 911 as well. Did the ER doctor give you any diagnosis on your discharge papers? Did they understand you have RA?I had to have my ex husband call for an ambulance years ago due to a flare so bad I couldn't move.  We had been over visiting with friends the night before.  I remember feeling sore on their wooden kitchen chairs while we played cards.  I was really sore by the time we got home and went to bed.  I woke up a few hours later shaking and shivering and in so much pain I couldn't get out of bed.  I had dealt with a lot of pain from the RA but never anything like this.  I was terrified that night.  An ambulance was called and off to the hospital I went.  I was given 80 mg of prednisone and later was able to finally move and went home.  That's never happened to me since, but it's something that's always in the back of my mind of the possibility of happening again.

I'm sorry you had such an awful time with the pain and all that went with it.  Sounds like a very rough time you had and there was nothing wrong with calling for an ambulance. Good GAWD! That IS a nightmare. Of course you had to call for help! Thank goodness the meds they gave you in the hospital calmed the pain down. I would make an appt. with your RD and talk to him about feeling like you "were not yourself" during this episode. Hope you are feeling better and hope that never happens to you again. That sounds awful...and scary! Oh how horrible Tara!
I worked in the ER for quite a while and I can tell you that most of the people working there are hardened to some degree. In some respects it a survival technique. You see A LOT of really horrible stuff. But it can also be a liability when it prevents you from being compassionate. I don't think you should be asking if you did something wrong. I think the only question here is why did the ER staff fail you? You did nothing wrong!
I went to the ER once in the middle of the night because I had an ear infection and the pain was making me vomit and the pressure in my ear while I was vomiting made the pain agonizing.... Now going to the hospital for an ear ache is pretty silly, don't you think? I told the nurse I was embarassed. But I have to say everyone was so kind to me. Did I have more pain than you? No, just better nurses!

I hope you are feeling much better now. I'm really sorry you had to experience this. Tara, gosh, how awful for you!  Do you think the pain just got ahead of you?  I know that can totally happen and when it does, it takes quite a bit to quiet things down again.  I know from a relative that works ER, their job is to get you in, stable, and out the door by sending you home or admitting you.  I had this discussion after I came home from an ER visit feeling placated and swept under the rug!  I cried all the way home because I felt they didn't do enough and I was feeling foolish for even going.  My nephew said they want you to see you doctor for long term treatment, so treat and prescribe as necessary to keep you stable until you can do so.  IDK if this is just their policy or pretty much the policy everywhere. 

Whatever, I hope you can see your RD soon and have a long discussion about your pain management.  Maybe a recommendation to a pain specialist?  I just hate to hear you are having so much pain!  I wish people understood but often they do not. It sounds scary what you went through and I think people should be more understanding. We have the right to be able to go to the bathroom. I hate it when medical people think we should stay home and scream and put on a diaper and just leave them alone. yes it  happens to me. before I was diagnosed I would get like that and feel foolish for going to the er because they made me feel "dirty" for going. I have flares like that and have approached my doc about it many times. I can be sitting in a chair literally feeling "it" coming on. My doc says mostly the fibro doing that. I dont know but I can walk fine 1 minute and then 1 hour later barely be able to move. It always scares me but have gotten where I dont ask for help I usually just try to get comfortable position in bed and dose up on meds and try to sleep through it and usually when I waake it is barable again. Stress and over exertion can trigger it. Its funny how I call it "it" but dont know what else to call this creature. I am very tired of it and sometimes think the dioctors are missing something more then just fibro and Ra. but oh well I will one day learn to accept this its hard. I still at my worsrt times dont know fow much longer I can handle it, but in some way it is releaving to know someone else has these symptoms (sorry). But the era people do make you feel stupid but you are not it is scarey so dont let it bother you. ( a good cry in a hot shower works wonders)Hi, I can't understand how any human can treat another human that way, let alone a nurse in an ER, they are trained to be compassionate and understanding.  I do believe that because ours is a chronic illness, we are expected to just deal with it, esp when we have had it for so long!  We are not supposed to not be able to cope as we should be used to it!!!! If only it was that easy.  I am appalled at the situation and really feel for you but unfortunately I am not surprised anymore.  All the best, Janie. How are you feeling today???Wow, I really hope you are feeling better. I hope you never have that type of pain again.
Please do check in, let us know how you are doing.

Thank you everyone so much for sharing your stories and for your hugs and support.  I did call my RD the following day and he retained me on high doses of prednisone with a specified taper.  He is puzzled that the flu could trigger such an outbreak.  My regular appt. is in a few weeks. 

Reading some of your experiences "assures" me that with this horrid disease, it is possible.  The freaky thing is that I was compliant on all meds and even took an extra pred before bed, feeling achey.  I'm still emotionally in shock from the experience.

Doob, I'm so sorry that you experience this on a regular basis.  Good God in heaven my sympathies go out to you.

I did get discharge papers, I finally reviewed them yesterday.  The admitting diagnosis is RA, it says right on it treat with NSAIDS, steroids and narcotics for severe pain so I don't feel so bad anymore.  Secondary diagnoses vomiting and fever. 

OH why did my Enbrel have to stop working?  My sister is thinking Cimzia maybe the culprit, I'm still new on it and continue having breakthrough flares associated usually with a sort throat.

Thank you all again.  From the bottom of my heart.
I am so glad to hear you are feeling better!  I guess the ER got it right, they just could have been more sympathetic!  I am happy to hear you had a consult with RD too.  I guess the flu just compounded everything... I can see that happening.  I still wouldn't hesitate to call an ambulance if this happened again, what else are you supposed to do?  
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