A Doozie of a Time the Past Few Days.

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erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/16/2006 4:20 PM (GMT -7)   
Hey all,
I'll try to keep this short & sweet.
Been feeling really "downhill" but the past 3 weeks has been more than usual bad.   sad A feeling of fatigue so extreme it's a "if I don't lay down right now I'll collapse" fatigue.  sad Very bad muscle pain in the legs, feet, weakness in the legs, chills too.  Inability to physically walk! Yikes, that was scary.
 
Nausea started (but then I'm on many things that can cause that!) very dizzy, fatigue, in bed for a few days....then BAM....was like a faucet out my rear tuesday at 330am.  Continued for 10 hours.
 
Saw my GI last nite. In all...he thinks I picked up something viral. skull Which all makes sense when I think about it.  These feelings were not typical "flare" S/S of RA or Crohns...very different & very strange and unfamiliar. So far everything has been "staying in" & have avoided the ER and getting admitted (yeah...to pick up something else?LOL).
 
So be careful everybody.  If anyone has to go to the hospital for tests or anything, be careful with what ya touch!  Let me tell you...this was BAD, and never saw it coming. And if you're immunocompromised be very very careful.  Doc was telling me there's a big influx of flu and viruses in my city hospital...so it's probably the same everywhere this time of year. These buggers spread fast.


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


DREAMGIRL
Veteran Member


Date Joined Jan 2006
Total Posts : 600
   Posted 3/16/2006 5:33 PM (GMT -7)   
:-)  HI ERIN, WHEN I FIRST STARTED READING YOUR POST, I THOUGHT I WAS DOING THE WRITING, LAST NITE I WAS SO FATIQUED, JUST LIKE YOU I EVEN TOOK A NITRO PILL FOR MY HEART JUST IN CASE, I WENT TO THE DR. MYSELF THIS AM, THEY RAN TESTS, FOUND NOTHING SO MY PLAN IS TO LAY LOW TONITE AND TOMORROW. MAYBE I TOO AM HAVING A TOUCH OF FLU, HOPE NOT  BIG WEEKEND COMING UP.  GLAD YOU GOT IT ALL CLEARED UP, ARE YOU STILL SICKLY FEELING ?

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 3/16/2006 7:09 PM (GMT -7)   

Erin, sorry to hear that you've been so sick.  It sounds like you've had a fun couple of weeks :)  Glad to hear that the doctor thinks it was just viral, and not caused by one of your afflictions.  At least we know that a virus will run its course and normally vacate.  Both of my twin daughters have had a viral stomach bug in the past 3 weeks or so too.  They weren't having a lot of fun.  So far, I've caught nothing, but that's because I'm usually at work all day and they're home with their daddy.

Glad that you're feeling at least well enough to type a little.

Elcamino


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/16/2006 9:43 PM (GMT -7)   

take it easy erin, if you remember, the regular (not stomach) flu hit the whole household here in January - and it knocked me down for 6 weeks! And, honestly, I'm still not 100%. I've been very very tired this week as well - so, just relax, get LOTS of rest, drink LOTS of fluids (I know that doesn't feel good coming out, but you were recently dehydrated and that will make you so much worse!)

I hope better days are in your future soon!

***
 


madgirlything
Regular Member


Date Joined Feb 2006
Total Posts : 22
   Posted 3/17/2006 3:28 AM (GMT -7)   
hi erin
sorry to here you been unwell hope you are feeling better, you seem to suffer so much i feel for you.take care.
mad

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/17/2006 4:42 PM (GMT -7)   
hey all,
thanks so much for the care & concern.
well, i showered today! gotta start somewhere right?  took about 5 hours to stand up long enough to do it.  something weird with my legs...can not walk properly. how you normally roll from heel to toe and all...i shuffle and can't bend my ankle to "walk".
 
so i took it upon myself to start prednisone again.  wasn't able to get to the docs for an injection...so i hope it helps my legs.
 
the pain in both legs was still severe last nite...bad pain still in the small intestine area (right below left side of my rib cage).
if the legs get any worse i'm calling my GI. i really do not want to mess around with any neurological after effects a virus may leave, and these legs worry me some.
 
hah! Mad...you say i seem to suffer quite a bit?  in fact....i rarely get "sick" LOL.  nice trade off eh? Get a chronic disease at it's worse state....and never get sick!LOL  the last time i had a cold was in october and before that...wow, maybe a year or so? so as long as i do not have complications from this or it doesn't spread/get worse i'm happy.
 
this had just caught me so off guard ya know? because i didn't know if it were just a bad Crohns flare up or what. now i know why some docs throw their arms up in bafflement! i don't blame them! i give up too!
 
all 4 cats accounted for in bed.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


jess25
New Member


Date Joined Mar 2006
Total Posts : 8
   Posted 3/19/2006 4:10 PM (GMT -7)   
I hope that you are feeling better. I am constantly amazed that so many people out there have such similar situations. I saw where you suggested to someone that they see a Rheumatology specialist. Can you see one of these even if you have not been diagnosed? I have moderate cerv. spond., and am only 33. I too was a gymnast and currently teach school as well as competitive cheerleading. I am not willing to give up everything yet, because I think that there has to be some cure out there that I have not found! Get well quickly as it is back to the workmill tomorrow for all of us who were lucky enough to have spring break!
Jess25

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/19/2006 8:22 PM (GMT -7)   

dear Jess,

hi & welcome! thank you for your post.

if you have cervical spond. you could see a spine specialist or even a rheumatologist. a rheummy will be familiar w/ this issue.

have you an autoimmune disease?

a cure i am not sure there is...but there are definitely therapeutic help, medicines, and medical interventions that can help this problem.

is your c-spine causing a lot of pain?

as i tell many....quick action, early treatment, being aggressive.....keeps a lot of problems from arising and prevents things from getting worse.

what type of MD do you see currently?

take care & don't worry...school's almost through! SUMMER IS ALMOST HERE!!!!

sincerely,

erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


jess25
New Member


Date Joined Mar 2006
Total Posts : 8
   Posted 3/19/2006 9:00 PM (GMT -7)   
I have not been diagnosed with an autoimmune disease. I have seen md.'s homeopaths, chiropractors, ortho.'s specialist and surgeon, neurologists, neurosurgeons, and most recently a neuroradiologist. I am basically going to be starting over this week, as they all keep sending me in a huge circle. I am going to seek out a pain specialist and I guess another neurosurgeon. I just was thinking that I have been told I have lots of arthritis - knees, ankles, and most recently in my spine! I am at a loss as to what to do, but will start all of the calls again tomorrow. I am in constant pain now, even starting to effect my left leg and foot - Shocking huh? Not really~
Hope all works out with you and your dad. I am an only child. My mom died three years ago, and I have never met my dad, although he lives about thirty minutes from me. I wish that I could turn back time and take more time out to spend with my mom. My Nana lives with me now, but she is 75 and aging fast. She raised me, and is now helping with my two boys. I can't imagine not having a family unit of some sort to help and support you! Just know that some relationship is better than not having the ability to have one at all~
Jess25

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/19/2006 10:10 PM (GMT -7)   

awe...gosh you really hit the nail on the head! yeah, i would say see at least a rheumatologist. i mean, sounds like it's extensive osteoarthritis and degenerative arhtritis! even a bone and joint hospital would be an excellent place for a consult if you can find one.

i feel though, that neurosurgeons are too "scalpal happy" you know? but depending on the compression of the c-spine, you really can't fool too much with that.

so do you think all of this is sports related? injuries? you sound quite the athlete.  it's really the pitts when young! i'm 25 and been dealing with the worst of this RA since 22. from 16 to 20 it was OK because i could still workout, work, have a social life, and do everything!....at 25 i say, "oh what i would give to be 17 again!"

pain management is critical. whether it be NSAIDs or other analgesia....it's a lifesaver in regards to performance & quality of life.

what do you take now for treatment? or haven't they started anything yet?

thanks for your kind words about the ordeal with my "father" if ya can call em that.  but nah...i'm wiping my hands clean of him. i've always left my arms & heart wide open to him...but he makes no attempt. what can ya do? i am not letting it weigh heavily on me, i can't physically afford that. (truthfully...he's making the wrong friends! i mean, his daughter's in the nursing field?....wouldn't ya WANT to be nice, YOU'RE GOING TO NEED HELP ONE DAY POPS! LOL) but i will not allow any emotional abuse in my life from him.

i love my grandmother. she lives far away so i see her not often. she's a big support to me. she called me "her hero" when she was beating Colon Cancer! now that's a compliment!

so let us know how this week goes with your docs and calls and all. healingwell is great, especially the arhtritis forum. we've all grown tight-nit real fast, even brand new members. all types of RA, OA, PA, autoimmune diseases, discs...YOU NAME IT, YOU'LL FIND IT HERE! hah!

have a goodnight.  erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/19/2006 10:17 PM (GMT -7)   
just an update in my St. Paddy's Day Virus. devil loaded up on mega-whopping doses of prednisone skull and solumedrol wednesday & thursday night. NO SLEEP for 2 DAYS...  redface  i hate steroids.
could walk better yesterday & today. a more normal walk, not much a shuffle.
green snotters (ewwwww tongue ) , fever, abdominal cramps, clogged nose....but as long as i can move my ankles i'm happy (that scared me).
 
had to stay away from my honey. sad but hoping this will get better this week.
i think i made a good call on taking the steroids...i feel it would have got worse i i hadn't. never had that much inflammation in my legs.
 
take care all.
:-)  
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/23/2006 12:19 AM (GMT -7)   
redface  I HATE STEROIDS.
I feel redundant in saying that because evreyone says that. but again...I HATE STEROIDS! can't stinkin' sleep! redface
the whopping doses i took did get me walking (well, a good enough shuffle to be considered a walk). thank God. and has reduced the joint & leg pain.
still though...a bad pain in my abdomen, left upper middle side(twisting cramping sharp pain) and also right in the middle of my abdomen as well...burning pain.
but no big "D" for a whole day. can eat a little at a time.
Seeing the rheummy monday to get my knees done (huh...sounds like i'm going in for a face lift) and to tak about adding MTX to the combo.  need something more in addition to what i'm already on to get NEAR a remission state of somewhat.
I wanna go swimming. sad
here's to a better tomorrow.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/23/2006 12:47 AM (GMT -7)   

I'm so sorry to hear how rotten you are doing erin! Take care! I hate steroids to - man, they make you SO jittery!

I hope things start getting better for you..............it's been too, way too long for you!

sad
 


Boo
Veteran Member


Date Joined May 2004
Total Posts : 724
   Posted 3/24/2006 2:39 AM (GMT -7)   
Hey, Erin and Everybody! That ankle thing is everyday for me. They won't bend in the morning at all. I look like some kind of unbendable blob when I roll out of bed.
I'm fighting with ortho right now. Wasn't too impressed with him to begin with when my regular ortho moved out of state. I haven't had an eppy for 6 months and don't call the office unless I'm desperate. They used to work me in pretty smoothly but all new employees (guess the old ones who knew me got tired of Dr. Cauliflower Nose too). Anyway, I'm having the wretched nerve pain again and he's not too fond of eppys. Wants to do surgery. So I'm looking for a new ortho who is more conservative and into pain management instead of kinfe-happy. Need another opinion anyway. My disc bulges are in more of a precarious spot in C-spine and surgery may not work anyway. Nuts and bolts and all that jazz aren't my cup of tea when an injection ervery 5 to 6 months keeps me mobile.
Here's to a good day to everyone (raising hot, wonderful cup of java). Boo

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/24/2006 8:19 PM (GMT -7)   
yeah, to a better weekend at least!  i'm disapointed with my legs and walking.  got in the shower today...bu that was it.  i really wanna go walking so bad.  i hope tomorrow morning is good.  i'de settle for 10 or 15 minutes outside.
bummer of a thing was in the shower, after 10 minutes, it was so painful to stand.  awful knee and akle pain.
redface  nighty night.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/27/2006 10:55 PM (GMT -7)   
confused  still has been rough.  sunday i had a good day, which was a true blessing.  this morning though was awful; had a seizure (last one was @ the rheumy's office in late january i think) and bad breathing trouble. chest pains (like costo pain) hips pretty painful too.  it all eased up a wee bit & at least i was able to walk a few minutes.
 
so i have to wait till May to get that Promethius test for my Imuran level; am keeping on the Humira every 4 days still. now i have to decide if i want to approach my rheummy with starting MTX.  eyes my GI last week suggested it. i'm confused. eyes   they were all gung-ho on starting the Remicade...but now they're talking MTX in combo w/ Humira and Imuran.
 
maybe give it a shot? it does say in plain ol english that Humira works best in combination w/MTX. so why am i not on it? confused so that'll be friday april 7th's appointment.
 
this ain't easy! mad
also still no word about my appeal for SSI/Dis. been over 2 months. perhaps they are actually LOOKING at my case this time and not just my age.
hope everyone has a peaceful night.
thanks for listening.
with love,
erin
 
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


jay5
Regular Member


Date Joined Mar 2005
Total Posts : 144
   Posted 3/27/2006 11:07 PM (GMT -7)   
Hey Erin,This is Gracies Grandma,Sorry to hear that you are having such a bad time,Just wanted to let you know that grace and I will kept you in our thoughts and prayers! yeah May God Bless you!Jay4 PS. Grace is doing very good,still on pred ,but has inproved so much,thank you for all you kind words,Hope you feel better soon. tongue From Gracie and grandma

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/28/2006 1:34 AM (GMT -7)   
awe thank you. it was great to hear from you! that sweet Gracie, what a tiger.
you as well, Godbless you & your family.
sincerely,
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.

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