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        New Message Board Archives >> 2006 General Board Posts >> Scary Experience (Updated 4/26)
        
(Message started by: Lizzie2 on Apr 25^th, 2006, 1:12pm)

Title: Scary Experience (Updated 4/26)
Post by Lizzie2 on Apr 25^th, 2006, 1:12pm

On Friday to Sunday, I worked 3 12 hour day shifts in the NICU. By Saturday night, I was feeling a lot of joint pain, but I attributed it to being on my feet so much and the weather.

However, Sunday morning, my alarms woke me up, and I couldn't get out of bed. It took a couple of minutes, but I was able to get up eventually but couldn't move my fingers - I turned off my alarm with the outside of my hand. I was too tired to think much of it and did the battle between sleep and snooze button until I absolutely had to get up. Getting ready for work meant taking a lot of slow, deep breaths - I'd never really felt pain like this before. I was a little afraid to drive as the pain was in both ankles, both wrists, and my right knee. My left arm was swollen to some ugly proportions. Somehow managed to get to work only 10 minutes late.

I decided to stay at work instead of going to the ER to get checked out. In my recent evaluation, my boss's only negative to me was how many days I've missed. So I stuck it out. Throughout the day, those joints were getting more and more painful and more and more swollen. Everything was getting stiff. I thought I would go to the ER, but decided to call my internal med doc on Monday morning instead. I had to have help opening formula bottles, ends of tubing, packaging pieces. My best friend pulled off the tabs on my chicken nugget sauces from Wendy's...LOL The charge nurse and transport nurse took my admission at 6pm because I couldn't have done it at that point.

I slept on the couch Sunday night in pretty extreme pain. The joints got stiffer. I was having trouble standing up or walking at all. Monday morning, I called my doctor's office. They called back and asked me to come in at 1:30. So my dad left work to get me at my apartment and take me to the doctor. He was making fun of me the whole way because we had to laugh at something. I couldn't put on my own seatbelt or open the door. I was shuffling because of inability to really walk. It hurt so bad... When I got up to go back to the exam room, I burst into tears from the pain.

Got back there and of course the fire alarm had to go off. After 5 minutes, I felt like my entire nervous system was going into shock. LOL I got up and went back out to the waiting room in tears from the pain. Finally thank God it went off. The nurse took me back to the room, and the doctor came in pretty quickly. They probably thought I was going nuts...!

The doc asked me if I'd ever experienced synovitis before - swelling of the lining of the joints. I said I hadn't. I also had a spot in my left shoulder blade that would stab with pain and then would turn to pins and needles numb. My joints were hot as was the spot on my back. I'd had a low-grade fever and chills. Also, just continuing on with the nausea/vomiting lately - my GI doc had changed me to phenergan from zofran pills.

So my doc thinks it looks autoimmune or possibly like lyme. She thinks this time the ANA will come back positive which leads to testing all the other antibodies. The ANA would be another indicator of lupus. Apparently, you have to have 7 of 11 criteria to be diagnosed with lupus. I have had a couple already, but this incident and the tests would be more, if the tests do come back positive.

As hesitant as I and she were about this, I started on a Medrol steroid dose pak. It's a lower dose and just a 6 day taper, but still makes me nervous. However, even last night I got some of the movement back and the swelling doesn't look quite as bad! She also gave me some Mobic samples to try. My dad brought me back out to my parents' house because obviously I couldn't do much on my own! I slept on the couch last night and I took the 2nd day doses today. And now I can finally type almost back at my normal level. ;)

I told the doc that this was one of the most painful experiences I've ever had. She said that's saying a lot, coming from me! So hopefully I'll have the most recent test results back by tomorrow. If everything continues to get better, then I can go to work tomorrow and Thursday night from 11p-7a for my last night shifts. I haven't worked nights in about a month, but these were the only two they hadn't switched to days.

Just thought I'd share my experience cuz it kinda helps to get it out, too! I haven't been able to talk to anyone except my family because I couldn't use the computer at all. Hope everyone is doing well!

Hugz,
Carrie :)

Title: Re: Scary Experience
Post by cootie on Apr 25^th, 2006, 1:38pm

Um I realize I have no right to even try to compare pain with you guys or my type episodes or flareups but wanted to at least add that I know 'what' you are talkin about lizzie with what you just went thru. My doc was sure it was lupus and I checked out negative.....same for rhumatoid arthritis to explain some of the flareups. I've had to fight with things to open them and do stuff and I get pretty irritated and pissed off cuz I am used to doin things myself and not askin for help. So I tend to throw a fit and shake the shit outa stuff tryin to open it and kick at things to pick them up. I get pretty depressed and moody too. I've had alot of excess wear and tear on joints with horse raceing and wrecks so I figure it's a total joint ordeal of sorts plus spine damage of course that is apparent. I dunno.......I jus hope you feel better and get thru it ok and find sumthin that helps keep it all at bay. Joint Yanked Pam

Title: Re: Scary Experience
Post by Lizzie2 on Apr 25^th, 2006, 1:46pm

Pam,

I know that you and Tina can understand this experience.... They tested for rheumatoid factor again, too. I've had all these things come back negative a few times in the past. I guess she just continues to test in the flare-ups in the hope that something's going to come back positive eventually. Dunno....

I do feel for you, however! I'm not used to needing help with anything - especially not at work! I've never been hanging up sterile IV fluids and had only half the tab rip off the bag which meant I had to take my hemostats out to try to get the tab off....the charge nurse eventually got it open for me. But what does that look like? I'm suddenly incompetent? I don't like that even one bit!! >:(

So yeah - I understand. This was some seriously bad pain. If anything even hit against my fingers or hand, pain was shot through my arm and I thought I'd crumble. My dad grabbed my arm to help me in the car before he knew how bad it was and I yelled. He also accidentally bumped against the arm while driving...again, more pain.

I feel for you guys who experience this stuff all the time..... No clue what brought it on, and my test results may continue to come back negative, too. All I know is that I really don't want to experience this again...especially not if it's every time I work a long set of shifts in a row, which I do at least every 3 weeks!

Hugz,
Carrie

Title: Re: Scary Experience
Post by lionsound on Apr 25^th, 2006, 2:01pm

Carrie,
Please take care of yourself. [smiley=hug.gif]

Title: Re: Scary Experience
Post by tanner on Apr 25^th, 2006, 2:11pm

Lizzie and Pam,

I don't think there are any pain snobs hangin around here!

I just hope that your event Lizzie turns out to be a fluke of some kind :)

http://i61.photobucket.com/albums/h61/JaZTaZ/HUGS/Hugs2.jpg

These guys are real gentle huggers so don't either of you be afraid to use them......tim

Title: Re: Scary Experience
Post by sandie99 on Apr 25^th, 2006, 2:15pm

[smiley=hug.gif] My friend, I hope you're feeling better!

Wishes,
Sanna

Title: Re: Scary Experience
Post by Dragnlance on Apr 25^th, 2006, 3:11pm

Carrie,

I am very sorry you have to endure this too! I have relatives that have rhumatoid arthritis, one that is advanced, so I know what kind of pain they have.

You have my prayers

Your friend, Lance

Title: Re: Scary Experience
Post by cootie on Apr 25^th, 2006, 3:26pm

I explain it to Brad this way.......(people have a hard time understanding others pain)......I tell him it is the difference between ridein in a car goin down the road feelin so so and then bein pushed out rolling across the pavement hit by a car or two. Extreme I know. I had a flareup last nite start up and knuckles swelled and onea my knees started to sting and burn (seems at times it is bilateral....is that rite......mostly on one side and shifts)......feet joints started to swell and my old broken foot that never healed rite started to hurt and that area swells. My one elbow will a get a huge knot and I get big ones at the base of my head too flare up from damage worse. I get hot spots on my spine.....and my shoulder will feel like it is out of joint and neck tight as a drum. I even seem to retain water when it gets worse. I'd been workin outside too earlier in the day and rarely let anything stop me from doin stuff. (I do cuss alot.....esp when bending over tryin to get back up) Well the weather took a drastic turn for the worse today around noon and is cold and raining. Now my joint swelling ect has went down and my back has lighten'd up 'for now'........just for the time being.........I can have part of a day like maybe once or twice a month and them WHAM it's rite back where I left off if not worse then ever Pam

I wonder how eveil kneivel is doin these days.......I was evil kanookie........payin for it but it was FUN while it lasted !!!

PS: I found out that alot of meds make sumthin else worse.....so I do what I do for the pain but that is about it........tried the other stuff for this and that and it made sumthin else screw up or me feel worse. Can't wait for them to develope the NORMAL pill.........(I need a case of them)

http://bestsmileys.com/freak/5.gif

Title: Re: Scary Experience
Post by Charlotte on Apr 25^th, 2006, 3:52pm

I'm sorry you had to have steroids again. If it is lupus, is there a treatment that won't harm you?

I will be praying for you.

Charlotte

Title: Re: Scary Experience
Post by nani on Apr 25^th, 2006, 6:47pm

Sheesh, girl...
... so much to deal with, and you're so young. Maybe once this semester is over, it's time for a bit of an "over-acheiver" break. It'll be a good time to concentrate on your health, and maybe even get a minute or two of free time. Keep us posted, OK?
hugs, nani

Title: Re: Scary Experience
Post by Lizzie2 on Apr 25^th, 2006, 7:14pm

on 04/25/06 at 18:47:15, nani wrote:

Actually - the semester is over! :) My course paper was due on April 10, and I got the grade back today - 100% and it's 50% of the class grade, so I most definitely got an A this time around! I had a few other assignments I had to finish up since then, but they were easy. I have very much enjoyed this class!

I'm taking the summer off from classes, though. Since graduating last spring, I've taken a class in the fall semester and spring semester. I was going to take one this summer, but I decided I wanted the time off. The job is difficult enough on its own without having classes and stuff to worry with, too! I would like to just focus on getting used to day/evening shift work and focusing on my apartment and myself for the summer!

I think this last 10 months of adjusting to the NICU has been really hard for so many reasons. It's hard enough to be a new RN, but to be a brand new RN in the NICU is just that much harder. It's so intense and you don't learn anything about these subjects in school. There's still more I need to learn!! Also, I just need time to catch up on things I need to do for my life...forget about my master's work.

So yeah - plan is...no school this summer! Won't ease up my schedule any because I only spent about an hour a week on class with the occasional extra time when I had to write a paper, but having it be an online class, it wasn't much! However, it's just one last thing I have to worry with!

Had thought things were improving quite a lot, but my back has this spot with a lot of numbness and tingling in it, which was there a few days before the joints started swelling. I was trying not to think about it, but my internal med doc thought this steroid taper probably wouldn't be enough to knock this thing but she wanted to start with the lowest dose/shortest taper possible. Arg....... trying to be patient, but it's hard!!

Helen did call me for a nice long chat today so it was good to hear from my buddy. :) Cheered me up! :)

Hugz,
Carrie :)

Title: Re: Scary Experience
Post by JenniferD on Apr 25^th, 2006, 7:23pm

Carrie, what you described is nearly identical to what my brother has........lyme disease. I've seen him walk like an 80 year old man and in so much pain now for close to 20 years that he has admitted there have been times he wanted to end it. Noone better say a damn thing about what you experienced cuz I know first hand what he experiences everyday.

Please take extra good care of yourself, TONS of extra vitamins, especially those for immune system. (Shaklee makes some good ones) If it is lupus, you'll still need the same, and if not, what can it hurt?

Hugs big time, but gently.
Jen

Title: Re: Scary Experience
Post by Charlie on Apr 25^th, 2006, 7:47pm

I'm hoping you continue to improve....or else!

As I've said before about clusters: How about one effen thing at a time?

Geeze. http://www.kolobok.wrg.ru/smiles/personal/comando.gif?SSImageQuality=Full

Charlie

Title: Re: Scary Experience
Post by Lizzie2 on Apr 26^th, 2006, 1:05pm

Well...results time...

My sed rate (nonspecific test for inflammation) is elevated as the upper range is 19 for their test, and my level is 27. This is one that has been elevated a number of times for me.

My CRP (nonspecific test for inflammation and infection) is 5.27, which is over 8 times what it should be.

However, the ANA, RF, lyme, and all other tests are normal. The doc was shocked by that as she was certain one of those big 3 would have come back positive.

She's still convinced that this is the result of an undeclared autoimmune disease. She feels that there is most definitely an inflammatory process going on, and then I also have the other positive test results of the lupus anticoagulant and the anticardiolipin antibodies, with clots...plus the entire diagnosis of New Daily Persistent Headache appears to be autoimmune.

So she's sending me to a rheumatologist at Graduate Hospital. While they don't take my insurance entirely because I go through Jefferson's employee benefits package, they do accept the Blue Cross specific plan. So it just means a slightly higher copay from me and that I have to ensure that any special testing is done back at Jefferson by my internal med doctor.

She told me this doctor is very good. She sits down and listens to patients and tries to put all the pieces together. She's not one to just glance at negative test results and then say there's nothing wrong, even though my clinical signs say something's definitely not right. My doctor said it can be a very frustrating pursuit as it sometimes takes 10 years to find out what's truly wrong. She said one day it'll be a huge positive on the ANA and lupus will be easy to diagnose. Or they'll find all these other antibodies to test for that we haven't been able to find yet. But in the meantime, I'm one step ahead in that I actually have doctors who are listening and willing to go to bat for me. I don't think this doctor will give up until we find a definitive autoimmune disease going on, even if it takes years.

So the next step is to see this new doctor in rheumatology on May 8. I also have one minor and one more major GI test upcoming. Gastric emptying scan on May 15. Upper GI endoscopy under anesthesia (I'm not a candidate for conscious sedation with my medical history and allergies) on June 1. I'd thought I should simplify my process to find out just what is wrong as it most certainly takes a good bit of my time and energy, but I just can't. When you know something is wrong, you've just gotta keep putting one foot in front of the other until you get the answer and then can find an effective treatment for it.

One more mountain to climb, I guess...!

Carrie

Title: Re: Scary Experience (Updated 4/26)
Post by Dragnlance on Apr 26^th, 2006, 1:35pm

My brother has something simular, called Behcet Syndrome... it is very hard to detect, but some of what you have here sounds like what he has...

maybe worth inquiring about?

Title: Re: Scary Experience (Updated 4/26)
Post by Lizzie2 on Apr 26^th, 2006, 2:06pm

Oooh thanks for the thought, but there are certain hallmarking criteria to that disease that I most definitely do not have.

I really have to try to get some sleep now as I work tonight, but I wrote an email to my mom a short bit ago which outlines the 11 criteria for Lupus. I have 5 of the 11 criteria, and my internal med doctor says y ou need 7 of the 11 criteria for lupus to be diagnosed. Only need 4 for lupus to be suspected, however. Which is why we're headed down this route, I guess...! I didn't realize there are a few bits of information I do need to get to her, however!

OK I gotta get some sleep or else I'm gonna be taking care of babies standing up half asleep tongiht. And that just doen'st work with my job!!

Hugz,
Carrie :)