Hello everyone,
If you don't like to read - please stop here. :)
I am a recently dx RA person, 47 years old female. My RA seemed to hit like a ton of bricks out of no where land, with no family history and me a person who must have talked too loudly about just what a healthy person I was. Never got colds, never got flus, no aches and pains- feeling great pushing 50.
Mid Nov. while covering for my boss on vacation-after going to bed the night before right as rain, I woke up with all my joints aching. I thought flu. After 3 days with no other symptoms coming on I went to the doctor who started doing blood tests. You know the routine, Lymes, tec., etc. No positives. Just high levels of inflammation. She prescribed naproxen. I wasn't presenting with any swelling at the the time.
Saturday of that week I woke up to be in so much pain I cried. I called my doctor who prescribed darvocet and told me to make an appt. with a rhuemy.
AHHHH waiting lists. She made a call and told them to put me on an emergency list for the next cancellation.
Luckily it came quick- that Tuesdsy the day my boss got back to work. I left early and went.
Lots of bloodwork now, testing for all kinds of scary things, sexually transmitted diseases (I've been faithful for 25 years- is it possible my husband was not?), Parvo, (isn't that a dog disease?), RA. This doctor was not one to tell you why she was doing what. I got tested for TB. I thought she thought I might have TB- I didn't know that was for medicines reasons down the road. Chest xray (?) Hands xrayed.
Everything was always negative except for high levels of inflammation & sediment. From the rest of my symptoms, I had begun to swell and have warm joints, joint pain symmetrical, etc. I got a RA dx.
They put me on Prednisone and I got worse. They upped it. I got worse. On Dec. 8th I woke up in so much pain & crying again. it was a Saturday again. I called her. She said go to the ER. They will probably take a blood test, give you something for pain and call me.
ER doctor is like- why did she send you here? I repeated her message. Haven't you had lab work? Look at my arms and ask me again. He was amazed. he called her. She changed my meds over the phone, he wrote the prescriptions, gave me one of vicodin of his own and gave me a shot. The pain got bearable. ER doctor told me rheumy said if I felt bad the next day to call her and she'll see me in the office.
HELLO! Sunday was worse! I'm talking level 11 pain. My hands and feet are the size of Shrek and I'm a little lady. My joints are so hot they are sweating. I call her up. I tell her how I'm feeling. She says we'll keep our appt. on Monday. I felt too sick to go anywhere and didn't call her on the ER doctor's promise but I told her Look- we need to talk pain management here. I can't be given these one step up from a Tylenol pain medications for this kind of pain- I NEED NARCOTICS!
Well that pissed her off. She told me in no uncertain terms that she does not prescribe them over the phone without seeing a patient and furthermore you do not treat RA with narcotics! I told her that there are plenty of people with painful diseases and pain managemnet is part of the treatment and they get the drugs they need to make them comfortable. I said no one should suffer like this- I think you are very cruel. We hung up.
She called backed and asked that I come to her office that afternoon. After seeing me she was a little nicer, changed my meds, gave me percocet. Wow.
It was all downhill from there. I didn't sleep from Dec 8-20th. I had an 11 hr. pain cycle that started at 11 PM every night while the rest of the house slumbered. I suffered alone, terrified of the unknown. I grew so weak I could no longer sit up or stand unassisted. I was an invalid. It fell on her deaf ears. I didn't want to live anymore.
Next appt. my husband said to her- I would like you to come to my house 4 am one morning and see what my wife is going through- (Now this is his exaggeration because I the only one I cursed was she) She curses me, she curse you and she curses GOD when she has to make that walk to stand under the hot shower that does nothing for her!
She had a fit- said I could get a 2nd opinion anytime I wanted. Said she was going to call my GP and that I should make an appt. to see her as well. came back with her associate who also looked at my feet and ankles which now looked like they were going to burst.
They told me to go to my GP who would reinforce the fact that there are no magic pills to get me better. Also- she would send me for a CT Scan with contrast. Since this came on so suddenly and was not responding to treatment perhaps it was an underlying malignancy. Good GOD have mercy!
My GP is very nice. She did a much better job explaining things to me and was very empathetic although she swears this doctor is top in her field. She prescribed Lunesta for me so I could sleep. We scheduled the CT for Friday.
After a few nights of sleeping that awful pain cycle and weakness ended. I still had a good 4 hrs. of level 10 pain in the morning.
The results were to be in Christmas Eve. I consider myself a spiritual person and I have to say my faith was really tested through this whole thing. I kept asking Jesus where he was. What could I possibly done to be punished like this? What was he trying to teach me? Please, please help me! I did feel I got a message that everything was going to be OK. Not only OK but HE would restore me 10 fold of what I was.
Praise God- no maligananies! I was able to go to my sister in laws house to celebrate with the family. I couldn't open my own gifts Christmas AM but had a nice day with my family.
I continued to have the bad mornings. Some worse than others. Sometimes I could feed myself, sometimes I couldn't.
I had actually been on MY firstchoice doctor's waiting list all along and got a call on Jan. 4 that there was an appt. available.
This man is wonderful. He spent 2 1/2 hrs. with me. I had chronicled my entire experience and he not only read every word but asked questions and made notes.
He increased my prednisone and split it out morning and dinner time.
The VERY NEXT MORNING I was a NEW WOMAN! I knew the minute I woke up. I didn't have to gingerly move each joint to see which ones were going to scream. I didn't need to rock back and forth on the couch getting up the nerve and telling myself- it's not that you can't do it- it's just that it's going to hurt before standing up and taking that painful walk to the shower. I JUST STOOD UP! I was stiff but it wasn't particularly painful!
I have been progressing nicely ever since. My next appt. is this coming Wednesday.
I have been out of work since Dec. 7th and keep getting asked when I will return. My disability papers have been filed but no determination made. The company I work for is small and does not have to pay medical benefits when you are on medical leave. My COBRA payment is 00 per month!
I want to go back to work but I'm sure I'm not ready. My boss emails me daily-he's being nice about it and not saying if you don't come back soon you don't have a job- I just think he really needs a feel for it.
Has anyone been in that situation? How do you know you are ready?
Like I said for 2 months I was an invalid- I've only been feeling better since 5th. I'm still stiff in the feet, ankles, knees and hands. My hands do not close completely and are clumsy. I'm a customer service manager. I aiming for the last week of Jan. or 1st week of Feb. AM I crazy?
Thanks for listening,
Lisa
Well welcome Lisa! That's one heck of a story! I'm glad you found us. :)
I can't really offer too much advice about the job thing, but I know someone will come along that can!
I look forward to your posts!
Lisa,
Not crazy at all. Most of us have similar stories some better and some worse but we CAN all relate to you. This is a long-long-long road to find out what your life with RA is going to be like. And many times our plee's fall on def ears. I am glad you found us. There are some great people here with lots of info. I hope you find comfort here as so many of us do. Ask any question you might have someone will have input.
Jay (PS I liked the heads up at the begining Hi wanttobeRAfree---I have heard versions of your story before, and it
sucks every time. Welcome to the board but sorry you have to be here.
Unless you lose the RA lottery and have med resistant RA the
probability is you will never feel worse than you do right now---the
first year is the toughest. I hope you stick around and glean much
knowledge and useful from the peops on this board. Chances are if you
have a question or something weird is happening, it's happened to
someone else before you who can tell you all about it.
Sorry you're feeling so crappy (but glad you're feeling not as crappy as you were).
Hello, Lisa, and welome to the AI family!
Oh my goodness, you've had a rough couple of months there! I'm so glad to hear you switched rheumys and found one that actually listens to you. I don't want to bash Prednisone - mainly because it's making you feel normal again - but I do want to caution you about using it as a long term remedy. It's just one of those icky drugs that causes some pretty bad side effects and is hard as hell to ween off of if you've been on it for a long period. (But then, there are other people who have used it for years that have no issues at all.) I'm sure your doctor will provide additional options to you at your next visit (DMARDs, biologics, etc.) There's also something called AP therapy that a lot of the people on our boards here swear by. My thought is whatever works best for you.
As far as working goes, I've been out of the job scene for almost a year now; mostly because daycare costs would negate the paycheck. I am looking for part-time work though. I'm kind of scared of being out in public around people who are ill and I'm also nervous about how I'm going to feel physically. It's such a fine balance of trying not to underdo or overdo things. (Exhausting!) Is it possible for you to return to work on a shortened schedule? You know, to test the waters so to speak? I would also discuss it with your doctor, but ultimately the decision is yours.
Again, welcome to the AI family and I hope to hear more from ya! There are lots of wonderful people on here with tons of information so ask away!
:-)
Pip
Do what, Pip??You can get FMLA and that will save your job. You get 12 weeks of that per year. My husband has it in case he has to stay home and care for me or one of the girls if I can not do it (like if I am flaring badly I can't care for them if they are flaring...nasty vicious circle, eh). The point is...you can get it for yourself. It is a federal act that protects your job in the cases of having a chronic illness and you have to take off of work because of it. Contact your HR people at work for the paperwork. You fill out part of it, the doc fills out part of it, and your employer fills out part of it. Hope that helped a little.
I am glad tho that you are feeling a bit better. Hang in there for that disability determination. Sometimes it can take awhile so that is why I suggested the FMLA.
Throws up a 9.3 card, giving a .10 for length :) Welcome aboard ~~ CathyPalindromic RA. I sent her a PM saying 'I think that's the exact definintion.'
I see Palindromic everywhere!
LOL
Edited to say 'see' - Geez, blew the 6th Sense Reference completely.
Lisa, I am glad you found us, and don't worry that this is long ever! Sometimes it takes writing out our stories to get our heads around it. I am glad you are doing better, but man you have been through the ringer. I understand that level of pain, but mine did not surface over night more like about ten years or more, but I ignored it, and pretended that everyone in the whole world had pain, so why shouldn't I. I am glad you are getting the help you need, and stay with the compassionate doctor that you can trust.
Be ready to post even more when treatment starts to come and such. There are a lot of people that know a lot of stuff here, and they are very good and nice people too.
Take care and sleep when you can. You will know when to go back to work...Jesus will tell you.
Hello and welcome!Hi wanttobeRAfree:
I'm so sorry you are having such a hard time with all this. Like was stated before, the first year or so is the worst. What is really frustrating about ra is you never know one day to the next how you will feel. Do lots of research. There are lots of different drugs to take that will help. It's just finding the right on. I think you need to see about getting a anti-inflammatory to help with the pain, swelling, and stiffness. Keep in touch and let us know how you are feeling. We all care and are going through alot of the same things.
take care