hi guys, my name is
erica. i'm 27, full time mom, student, & bartender :) and i was
just diagnosed with rheumatoid arthritis. i had always considered
myself an intelligent person, yet i was surprised at how clueless i was
to RA. i considered it an old lady disease & had visions of gnarled
yucky hands and shuffling around with a walker and i was horrified when
i got the diagnosis. i read up quickly on the net, while i was waiting
on the xrays and bloodwork to come back (sad to say it but the net can
be your worst enemy when researching anything medical) and freaked out
so i abandoned my googling efforts. however there was a considerable
bit of 'trustworthy' sites that i gleaned enough knowledge to know that
my first perception of RA, who gets it, and how it would effect me were
SOOOO wrong! i stumbled on this board and i'm glad that there is a
place where people from all walks of life can talk to other people
facing the same situation. a quick rundown of what led me here: i have to go back
to the rheumy on friday and he wants to start me on immunosuppressive
drugs to try and keep the harmful stuff at bay for as long as possible.
sorry to write such a long novel about this, but its the first time i
have really been able to get out everything in one setting since i got
the diagnosis. i guess the important thing is that you know your body,
your instinct can be more powerful than anything especially stupid
people who don't want to listen to you and being your own advocate and
sticking up for what you know is true is all you can really do. also i
let my imagination run wild after a google experience and that is
something people should avoid. the internet is great for quick facts,
but RA is a very personal thing, its different for everyone and how and
where you hurt varies so much, and you cannot read the horrific stuff
and let that stress you out. hopefully everyone can find a dr that they
feel comfortable with and ask him a million questions until you get the
answers you need. the emotional side of RA is understated
everywhere i read. i feel like i shattered into a million peices,
however picking them up and putting them together again and going on
with my life has been a big part of how i coped with this. i realized
that laying in bed and crying only hurt me more. taking small things
for granted was now the bane of my existence. i made new goals, and new
plans and i hope that i am strong enough, and have enough support to
carry them out. like losing some of this prednisone weight, exercising
more frequently and in a low impact way. like changing my diet to
include more fruits veggies and lean protein and less junk. like
adopting a more positive and proactive way of managing my life and my
families lives. all of these things are important to staying of top of
this and not letting it crush me into a depressed pit of self pity and
agony. i hope that this isnt the longest post
i
started having intense pain, stiffness and swelling in my shoulder
lasting a day or so. then my ankle, then my wrist, then finally my
shoulder again. i had been feeling like crap for a while, sore throats,
general malaise, run down, fatigued kind of nonsense and my PCP gave me
a sulfa drug to get rid of the 'virus' when my shoulder started hurting
again i finally had enough and went to the emergency room. *side note*
first wrong diagnosis & negative run in with medical
professionals...they had me wait in a room for three hours bawling i
was in so much pain, finally a rude dr came in, jerked my shoulder
around some, declared i had a pinched nerve in my neck, shot my hip
full of delaudid and sent me packing. in their defense a woman at 4am
crying in pain with no injury they assume drug seeking behavior and
they treat you like dirt. he managed somehow to give me a RX for
predisone, and said to see my regular dr. i did and he said i had an
autoimmune reaction to the sulfa drug *second wrong diagnosis* and told
me even though the er doc was wrong he still gave me the right course
of treatment. well a few weeks after the course of prednisone which
made me want to eat my own arm off and made me gain 20 some pounds the
pain returned. my doc said i mustve had rheumatic fever, he assumed all
the sore throats and junk were strep that went untreated and he just
listened to my heart and sent me on my merry way. *third wrong
diagnosis* well i was starting to feel like a real jerk by now, a
hypocondriac a sissy a cry baby you name it. my boss was giving me
loads of crap saying i was faking to get out of work and to toughen
up...well deep down i knew there was something really wrong, and i
wasn't myself and even though i was a sissy, i know pain. i had two
children one completely unmedicated and i refused to believe that this
is normal in any way. finally i went to a different doctor, gave him
the detailed long version of what i had been going through and he did
blood work, said he thought i had lupus *fourth wrong diagnosis i think
i have lost count haha* and referred me to a rheumy. i was wary of
course but i decided i had nothing to lose. i had swallowed my pride
told the dr everything and left it up to a higher power. my labs came
back with a high rheumatoid factor and my doctor didnt really tell me
what that meant, he stuck to his lupus theory and i went to the
rheumatologist. he was super thorough and understanding, and gave a
thorough exam, each joint and all that. he sent me for xrays, more
labs, (think 14 vials of blood) to rule out other autoimmune disorders
and diseases, and gave me a tentative diagnosis of rhematoid arthritis.
my labs (all except for the RF) the first time were good for the
markers of inflammation like sed rate, ana, etc, and the new round of
tests showed an elevated sed rate, positive ANA, pos crp, still pos RF,
and a strongly positive ccp of 127. i was a bit alarmed that only 2
weeks before most of those were normal but regardless it was def a step
in the right direction to fixing me! my xrays were all normal as were
all of my other blood tests. he said that the good thing about being a
sissy was that i came to him while my RA was still in the early stages
and no permanent joint damage was done. i felt very vindicated in my
quest to getting someone to notice that i wasn't ok. however diagnosis
is a double edged sword. i felt immediately relieved to know that i was
indeed right, and following my instinct had saved me permanent harm,
and at the same time completely intimidated about the prospects of
dealing with a life long incurable chronic condition which is known to
be debilitating. also the pos ccp test is usually an indicator of a
more aggressive and erosive form of the disease. the felt a gamut of
emotions ranging from complete and utter devastation and depression and
resilence, like ok fine now i know and i can take preventative measures
to keep my life as normal and pain free as possible. with two kids 7
&2, i cried buckets over stupid things i take for granted like
coloring and diaper duty. you would've thought they'd told me i had
cancer the way i reacted. in some ways i think i grieved for the future
i had dreamed about without really being realistic about how the worst
case prognosis isn't always the erica case...
think most of us have been there. The first year is definately the hardest
because it's so scary and it kind of takes over your life at first, but it does
get better and easier. Your story of trying to get a diagnosis is not
uncommon and in fact it has taken some people years, so good for you for
persisting and getting some relatively speedy help. There are all kinds of
therapies and miracles out there, so please don't be too quick to discount
the internet as a source of information.
This board has a lot of collective knowledge, so if you have any questions
just ask and you're sure to get a bunch of answers. Hang in there! The two
best bits of advice I got from people with RA when I was diagnosed were "Be
really nice to yourself" and "Live a happy life".
Welcome, Erica, your explanation of what happened to you is unreal! It reminds me of so many things I've been through in my life, not just about RA, but many other things too. YOU are sure right that you have to stick up for yourself, stick to your guns! I can see why you were so scared at first, as you were getting no help from 'the doctors'. Honestly, you got the run around. I think you were right that people were thinking you were a hypocondriac, as I got that same BS from my doc's office after heart surgery , YES heart surgery. My RA went ballistics and I had to keep going in for that, my Gen Practitioner didn't get it and his 'crew' were not helpful. I just started hanging out at my RD's office and didn't even include the GP. I was in screaming pain and even saw a Pain Management guy. 30 pill types including gabapinton in such large doses I fell in the shower! I finally got on 15 mgs of Prednisone which saved me.
You did not deserve this treatment, and I'd be mad as hell if I were you. But, I can see you are very brave and able to think of your little children and how you need to get this dang stuff under control and plan your life in the future.
I think now you are on the right track. So many of us have had this disease, or one like it, for years and are in various stages of dealing with it. We all take pretty serious medications to protect our joints and are constantly adjusting them , depending on how they are working for us.
I hope you will let us know what kind of drugs are prescribed for you, as it helps us to know what response to give you. I took methotrexate for 10 years and it worked to control the damage to my joints and didn't cause me any problems. Now, because of the heart thing, (and the terrible flare afterwards) I'm taking Remicade, also. and just got off of the prednisone.
You are so wise to examine , and deal with the emotional side of this disease and you will find this forum its really full of wonderful, supportive, caring people who understand and they are pleased to read your posts and get to know you.
WELCOME,sorry this stuff has gotten you, and please keep posting. As some say 'this is the beginning of our journey together. Lynda
^thanks guys! gimpy, i understand what you are saying about the internet. it has been a good sourse of info for me now that i have an answer and a different more realistic idea of where i stand with RA, aka no joint damage yet and what the plans are to prevent it as long as possible. i think though that when i was still in the dark, like labs were out still, and i had no idea what i was facing, being the curious person that i am i turned to the net and got the scary pessimistic side of RA. you know the worst prognosis and ten years down the road version and it scared me and intimidated me. i think now that i have some preliminary answers i can better evaluate what really pertains to me and what i am facing. knowledge is power, but knowledge in the hands of someone like me with really no clue yet what my personal situation was the knowledge caused crippling fear, paralyzing anxiety and caused more stress than was necessary. if i'd been a good little girl and waited to talk to my dr and find out my results before i scoured the web i might not have been so easily brought down by the information and it would have been more powerful like it is now.treatment makes a big difference in pain levels. it is difficult to predict how you will do as each case of RA is individual. Getting the disease caught and treated early is a HUGE advantage in preventing damage.
Print out a list of side effects of pred for your husband. That is the drug we love to hate. It does wonders for the inflammation but its list of side effects is ugly..and almost everyone gets some kind of side effect from pred. Most rheumatologists now want to keep pred fro a short term treatment so part of your goal should be to find another treatment so that you can wean off the pred.
I know that the diagnositic process can be frustrating. As you discovered the early symptoms can resemble so many other things. It is only when they can be evaluated collectively, and sometimes it takes a while for them to appear, that a clearer picture appears
< =text/>_popupControl(); Hi and welcome to the board!! What a road you have been on to get to us! Wow!
I am going to *try* and answer some of your questions...hopefully I can lol. AS far as the pain goes...it jsut really depends on the day. It can be all day..stiffness can last all day. It is just so varied and different between person to person and just really what kind of day it is. There are days I can't move. Then there are days where all I take is my maintenance dose of pain meds. It is the hope of the docs and us that the meds do keep the pain away. That is really the goal. If you have no pain you either have gone into remission or the meds have calmed everything down a whole lot. I can only speak for me where I have had severe flares (just spent 4 days in the hospital from one) where nothing does work and I have been hospitalized for flares. That has happened twice this year. Even on the meds you can have flares. A lot of times those are weather related or you might have really just pushed yourself too far. When I was on meds that were working..I would still flare with the weather. They just weren't really bad flares. Not enough to really keep me down. Just enough to make life a little uncomfy.
Wow...you really had some bad side effects to pred. I usually just get sick lol. Yes, pred can affect your moods and the ability to think properly. When I was on 60 mg of pred...I was just a mess. My moods..I couldn't the words from my brain to my mouth or fingers lol. What really can work is just telling your family that you are going to be moody and when you get out of hand..to please gently remind that you are getting out of hand and to just sit down...relax...take a deep breath...and start over. I'm on 30 mg onow and doing much much better lol. Ah yes, the pred munchies. Very common. And you will find yourself craving weird and unusual things at weird and unusual times of the day. I had to have pancakes and over easy eggs at 11pm last night lol. My hubby being the good guy he is...made it for me lol. It was really make it or deal with a cranky wife lol.
As far as side effects from the dmards and biologics...those can vary from person to person but generally they are the same types of side effects. Intensity just varies. Folic acid helps to decrease the side effects from MTX. I do still have some hair loss from it tho. However, I don't get the mouth sores. Your doc should prescribe folic acid along with mtx if that is what he prescribes for you. MTX is famous for tummy upset, fatigue, and hair loss. I avoid the tummy upset by injecting mtx instead of doing the pills. For me..the side effects from the biologics has really just been fatigue and a loss of appetite from the remicade infusions.
I cant really answer your lab questions but I can tell you this about labs. It doesn't matter really what your labs are because that is just one diagnostic tool of many to use with RA. Some people like me...are what they call sero-negative...where the Rh factor does not show but they have a mild to severe case of RA. And the other labs can also be relatively low but you have a raging case of RA. I was just in the hospital and all my labs were only slightly elevated. But that also tells me that the 2 remicade infusions I have had are working. Some people just don't show this disease in lab work.
Erica - and start an excel spreadsheet with all your blood tests so you can watch for patterns. Good luck and we are all pulling for you in here ~~ CathyWelcome Erica!! I'm a newbie around here myself.
I remember feeling a lot of the same stuff and going through the same emotions. Most days I'm pretty "up beat" and positive, but some days not so much. Like yesterday. It's been cold and rainy for three days, and my left arm is useless. Riding home in the car with my 13 yr old son after his karate class, i just broke down. Every day I tell myself "suck it up", but somedays it just gets the better of me. And i've decided that that's ok. It's ok to have a day now and then where I can say "poor me, bless my heart". Like skittles said once on another thread, pitty parties are ok, but like all parties they must come to an end, and we move on. It sounds like you have an excelent attitude, and I for one am a strong believer that attitude makes a ton of difference. I too recently embarked on a quest to eat healthier and get what ever exercise my body will let me. More veggies and fruits, less junk food and fast food. Stuff thats good for me and good for my body. I've found out there's a wealth of combined knowledge here. And you're right, RA is personal. But also it IS different for everybody, which makes this board such a life-saver. What ever you're feeling, whatever you're going through, you can be sure that somebody here has been through or experienced the same thing. Take care of yourself!!!
Hi Erica..welcome!
Palindromic?!?!?! I'm Palindromic!
In my opinion (I'm not a doc) you have a REALLY good chance of beating this.
Pip
Hi Erica,
I'm 32 and just been recently diagnosed beginning of October so I know exactly how you feel.
Just keep in mind that now you will get the treatment to control this disease and you need to keep a positive attitude.
It really makes a difference!
I am sending you tons of positive vibes from sunny Panama!!!
< =text/>_popupControl(); Panama!! How neat!! I don't think I welcomed you to the board. So...welcome to the board!!!Hi Erica glad you are here. My heart went out to you when I read your post. I was diagnosed with sero-neg RA and fibro this year so I know this is alot to take in. Hopefully your RD will get you going in the right direction. I started with MTX , really kept me nauseous all day so I went off of that . I am now on enbrel and sulfasalazine and doing fairly well.
Just a note on your hairloss I was on prednisone 10 mg ( a fairly low dose ) for about 6 months..My hair started to fall out about 5 months into it. I have been off for about 3 months and finally it has stopped. I read that just having an autoimmune disease like RA can cause your hair to fall out too.
I wish you much luck at your appointment tomorrow. Take Care !
Hi Erica and welcome. It made me sad to read your post and see you are a young woman with a family and job to deal with along with your RA. I have a special awe and respect for those who are dealing with all these things at once....I don't know how you all cope. Being retired, I can rest when I need to (except when my grand-daughter is here for a few days each month) and I can't imagine having to show up at a job or school function when I was feeling so bad. My heart goes out to all of you and my hat is off to you as well for handling this multiple load so well.
You also have a very mature, positive attitude about this whole issue and I feel certain you're going to do very well in the end. For the young people on these boards, I really believe there will be a cure that will keep you all from having to deal with this for the rest of your lives. That is the one positive thing about being young with RA, if you have to have it at all. Good luck and keep us posted on your progress.
Welcome Erica. All our stories are similar and yet so different (how querky is that?
I took advice before I went on holiday and had a couple of steriod shots, I dont take the tabs on a daily basis... thank goodness. I started Sulpha a couple of months ago. I have been very sick, lost hair, and weight, had boils and ulcers but I have to report that my body (as I was told it would), has adapted and generally I feel good.
The caring, sharing nature of this site is fantastic. There is lots of support when you need it, and we're always open to questions that need researching (there's a lot of people who love researching on the site).
A psychologist colleague of mine who has had RA all his life said that the our bodies get used to the drugs, eventually, but it takes our minds much longer to accept our bodies new limitations and that once we are able to accept our 'normal has changed', things will get easier to bear. I think your positive attitude is already helping you and we're all here when the down times come.
Welcome Erica!!!
Welcome to the Board, Erica!
Welcome Erica and the other good people I think I missed welcoming.
I have had some good, some bad days. The weather really bothers me as does my time of the month when Aunt Flo comes for a visit. LOL My dx is just over two years ago and I am still working on the right combination of meds. I have been taking humira for months and have noticed I have more energy and less morning stiffness. I have damage in my right hand and left foot. I also have had bursitis in hip. One thing I have noticed since being afflected by ra is you must have patience (that is really hard for me). A journel for yourself and dr is a good idea to keep track of aches, pains, and swelling, etc.
I am so glad you found this site. SOOOO many people are going through the same thing and can offer so much insight, compassion, and excellent advice.
Best wishe