Well, it's been a hell of a couple months, and I havent been here. Havent been able to check in.
I've been progressively getting worse. I started taking humira almost a year ago. Felt AWESOME for 4 months, and then - for the past 7 months, getting worse and worse. Working was becoming harder and harder, and my doctor thought maybe something else was going on besides RA. Took a bunch of blood tests, and nothing.
But then, I had a flair from hell....never had one like that before. At one point, I thought I was going to die, literally. My doctor insists that it WAS RA that caused me to feel that way, but I've NEVER had feelings like that. I've had RA for 8 years, and never ever had this.
I've never been in so much pain... never been woke up by my husband because I was crying in my sleep... from pain.
I need to ask if anyone else has had this - because I need to make sure it was the RA and not something else.
I woke up one day, and I couldn't move ANYTHING. Every time I tried to move, it literally felt like i was being stabbed on every inch of my body. From the bottom of my feet, which hurt like hell to stand on, to the top of my head.
My muscles were hard as rocks, I was hot - burning up... my throat was constricted and I couldn't breathe. If I touched my skin - it was SOOOOOOOOooo hot...and it sent ripples of pain thru my whole body........ Couldn't move.
Peed my pants one time because I couldn't get to the bathroom and get my pants down fast enough.......then - i couldn't get OFF the toilet. so - after that, I decided to just leave my clothes off... i was hot anyway. I was stuck in bed... sleeping sitting up - so that if i had to get up - i could... but i didnt. i couldn't stay awake. I think that was my bodies way of dealing with the pain.
I couldn't eat myself, because it hurt to move my arms... I couldn't do anything.
So - after three days of this, I asked my husband to give me my prednisone. I had been off of it for a couple months, and didn't want to go back on it... but being the weekend and not able to go to my doc anyway because I couldn't move, I decided that if prednisone didn't work, I would go to the hospital.
Took 20 mgs of prednisone and fell asleep. when i woke up 6 hours later, i could move a little... and i got up and went potty on my own. It hurt to move, but it was like I was sore, not like that stabbing fierce pain.
So on monday i went to the Dr and he was "appauled" at how swollen i was.... my ankles, knees, elbows, shoulders, hands and fingers were all inflammed....and this was after being on pred for three days.
He took me off work for a month and switched my Humira to Enbrel. I'm still taking the prednisone and now enbrel, and still injectable mtx.
Has anyone ever had an episode like this??? My Dr said it's a RA flair, a bad one... but it just didn't ring RA to me. It was my muscles that were hurting the most... the stabbing was in the muscles, the bottoms of my feet... my back, everywhere.... not just the joints.
anyway - i'm back now - feeling a little better. been reading this forum all day (since i'm not working)...and I wanted to send my hugs and prayers to those who need them. it hurts to type, so i just wanted to post my blanket hugs to everyone.......
sorry for the length of this post.... i hope i made sense.
thanks
woobie
Oh and I wanted to mention that I get sore not just in the joints...but the muscle as well. I've talked to a few others that have had this as well. Glad to have you back and that you're feeling a bit better. I hope you get some more relief soon. Kelly Yeah, when i told my doctor that I never felt anything like that before, he said that sometimes the flairs can be worse than when the RA started. COLD? I wasn't cold. No - I was definately burning up. Sweating, hot... burning to the touch, and all my muscles were rocks. ...especially in my arms. Was just weird!!!! Thanks for the input. I THINK that I'm glad to see at least someone else have a similar experience.... maybe it IS just RA. Atleast I dont have to worry about some OTHER ailment on top of RA... (for now). I'm sorry that anyone has to go thru that.......but I'm glad to know i'm not the only one. BUT WOW - I never want to do that again... ever. I'm glad I had some prednisone handy - I dont know what would have happened or how long it would have lasted if I didn't have it on hand. I can't believe it took me three days of that excruciating pain before I thought to take it. As for the "heads up that this can happen".... all I can say to that - is for ME - I will ALWAYS have prednisone on hand. I cannot do that again. I thought I was going to die. HEY Kelstev........ did your throat constrict too? It was like I couldn't get air, and the harder I tried, the more pain I had - more stabbing..... I almost thought I was having an allergic reaction to something..... I did have a rash on my arms too that I forgot to mention.... but my doc thinks that's just from the "high level flair". He insists that it was an RA flair. I was so out of it that I couldn't think. It never occured to me to call my doctor. All i thought was if the pred didnt work, I was going to the hospital. I was scared to sleep because i didnt' know if I'd wake up...but i couldn't stay awake either. Man - it was so scarey. never again... i hope. ok - sorry for blabbing on and on............ anyone else get anything like this?? woobie
My throat still feels wrong. It's like my glands are swollen, or my neck is out of whack. I'm still not right, but I'm better. damned prednisone. my doctor said i did the right thing taking the pred. at least that's one good thing i did. it's amazing, being i was SOOO out of it. ok - i'm done for the night.........i'm a gluten for punishment sitting here typing so much.. LOL thanks Well, get some prednisone then. I will NEVER be caught without it again. As much as I hate it - it saved me. i see your tag..."Yippee --no more prednisone" but, sounds like you need it sister. it sucks too - huh? every stinkin time i get off of it - i need it again. I thought I was good this last time, being of it for a whole couple of months. I hope you dont get a flair like that. I dont wish that on anyone... ever. Take care of yourself. I wonder what makes someone flair like that? A trigger or something?? Out of the blue, just blammmo - I dont understand what happened. I really, really need to get off of this computer...LOL Crunchy - dont have a flair like that - you hear me? That's an order!! woobie
I am sorry you had to go through that. Yours sounds much worse than mine though... and I wouldn't even wish that on my worse enemy. Glad to see you are back on the boards though.
do you all get like that? any little thing happens, and all the sudden, you have the worst thoughts, like you have cancer, or some wierd disease....and you're going to die? I guess RA just seems so simple to have it make your life so complicated, and I always think the worst. I hate RA. HATE HATE HATE!!!!! that is all
woobie
I hate that stuff, but I love it. I'm scared of it - that's for sure... but I cant live like THAT.
But, with the rash, and my throat constricting, not being able to breathe, being so hot - i thought I was allergic to something, but scared to take any benedryl or anything. (not that I could have gotten to it ....)
woobieWoobie, Glad to meet you and sorry to hear you've had such a rough time lately. I don't think I've experienced anything as bad as you but I've only been diagnosed for a year and a half. Before the doctor had me figured out, I had pain in literally all my joints and just got stiffer and stiffer. I couldn't even be comfortable in bed. I had this one zero gravity chair that was tolerable but only for a few minutes. I couldn't turn my neck or bend my back. Once on prednisone there was huge improvement. Now I'm still on prednisone with plaquanil, methetrexate and enbrel. I'm allergic to many medications and although the joints and muscle pain are better, I feel sick from the meds a lot of the time.That describes so much to a T the flare I had. I had peed myself
in the night several times and was stuck on the toilet. I also
felt like I was pinned down to the bed by gravity. I had the most
severe nerve pain when trying to lift my head from the pillow or even
move any way at all. I couldn't even lift the blanket off of
me. It was very scary.
I really relived so much of what I felt. My RA doc was also so
sorry for me when she saw me. I could barely hobble into her
office. It was a nightmare. My mother was so worried
because her RA never did that in all her 10 years.
BUT I am on medication now and feeling great. I hope you
recover. That is no way to live, and I remember how awful it
was. I wish that on no one.
Hi Woobie, welcome back! I have not had anything as bad as what you described, but I have had one flair where I had muscle pain and soreness that was just so deep...it was like nothing I had ever felt before. And last week I was feeling pretty good one day and the next I had a tight and kind of sore throat and my whole body felt like I had been hit by a truck. My feet and hands were swollen and I was soooo tired. It just came out of nowhere. The throat symptoms went away after 2 days but my joint pain got worse and is just now starting to get a little better. I have a feeling that my turn is yet to come with a monster flare like the one you just had. I am glad you are finally getting some relief!
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