Hi Everyone,
I have just joined this messageboard and am hoping to gather lots of info about RA. A quick history; i was diagnosed with RA at 9yrs old in both my knees. Oddly it never spread anywhere else (has anyone else had this?only in one joint??) and i had them aspirated and injected quite often. I was free from it for a few years and then had a flare up around 15yrs, i was put on anti-inflams and finally when nothing worked, azithriopene (excuse the spelling!).
This did put the RA into remission, When I became pregnant it went away completley, i was on no drug, it just disappeared and i enjoyed 10 yrs and 5 pregnancies with no pain. It did re-appear a couple of times lightly and i took Arnica200 for it and it went! Since i had my 5th baby in June 2004 things were okay until he was 11mos old and it suddenly came back with a vengance, its severely affecting both knees and my ankle is swollen and tight, plus one elbow which is restricting movement. I decided to try a herbal/natural way ( does anyone do this?) and change my diet, ommitting all the obvious foods etc. I am taking painkillers at night when the pain keeps me from sleeping.
The other thing is night sweats? I am getting very scared by this and have only had these since the flare up began, I get so hot at night and am dripping wet, usually in the middle of the night. Could someone tell me about this? Is it connected to RA? Why does it happen?
I await any replies with anticipation,
Love Petal
Hey Petal
You poor thing.
When I had the beginning of a very bad flare back in June I had awful night sweats.I was lying in bed with air conditioner going and still sweating.I don't know why,I think it was cause I was so sick,sounds like you are too.Even now during the day I will break out in sweat.it's the pain I think that makes us sweat.For me too I think it is I panic when in so much pain and that makes me sweat too.
5 babies.You are a Super Mom! How old are they?
I think I would get into see a reheumy.I know herbal treatments can help but with RA it is important to stop the progression as soon as possible.
BTW,Welcome to the board.
keep us posted on how you are doing.
Sheila
Petal, I'll let the ladies address the RA pre and post babies. I can tell you that I had terrible night sweats for a couple of months before I completed my Rx cocktail. I also had horrible hot flashes during waking hours, could happen anywhere. I had absolutely no heat tolerance. I'm much, much better now, although I still have the occasional meltdown during the day.
Mike
Hey Petal
Just wanted to say hi. I have not been diagnosed with RA, but have appt. to see rheumy in late September. Your comment about the knees caught my attention because I first started having pain in both knees. That was pretty much all I had for about 3 months. Dr.s thought it was an athletic injury. Then I started having pain in hands, feet, elbows and still knees. My knees are worse than ever. Have not had any night sweats, but I am awake a lot at night just in pain. Am anxiously awaiting my appt. Wow-5 kids-are you a stay at home Mom? I have 2 boys-it's hard to do things with them right now. Try to get an appt.-from the time my gp referred me I had a seven week wait. Good Luck and hope you feel better.
Jenn
Welcome Petal.
I don't want to discourage you from alternative medicines because many use them and have great success. It takes total dedication and discipline. The one thing I will say is work with a good Rhumotologist to make sure what you're doing is working.
RA left untreated can cause terrible distruction that can not be reverses later. Once it happends it happends.
Good Luck to you. I hope we see more of you here.
Lovie
Welcome to the board Petal. I'm new to RA, so unfortunately I don't have much advice for you...BUT, I also have had hot flashes and night sweats, so from other messages I've seen I would say it is fairly common. Don't know why, I think I'll bring that up when I see my Rheumy, which by the way, you really should do. A simple blood test can tell if your inflamation is getting worse or better with the herbal remedies (am I right on that everyone?). I REALLY hope you get better soon, I have a horrible sense of guilt every time I have to tell my kids I can't do something (I know I shouldn't) and I only have TWO kids, maybe it's easier with 5...they can play with each other? Good Luck!!Welcome to the board petal!!
Night sweats? Yes, I had them the first 6 months after having my son. I would wakeup and be soaking wet and actually soaked the sheets a few times. I have not had night sweats for about 4 months now. I do how ever wake up an hour or 2 after I fall asleep very hot and feel like nothing is going to make me cool off, except a shower. But I am too lazy to get in the shower at 4am...lol.
Welcome Petal,
I too have night sweats and day sweats too
Linda
Hot flashes and night sweats here. I had thought it was because of hormones even though I am on hrt. It didn't start until ra. Welcome to the world of ra. I hope you get relief soon Petal.Me too! Had hot sweats and terrible fatigue for a year or so prior to joint pain. OBGYN dx perimenopause. I think hormones have alot to do with triggering RA in some cases. Just my opinion from personal exp.
Welcome to the board!
Pam
Sweats & chills all around the clock for me! Now more chills than flashes -I was always the hotblooded one too!
Glad you found the board Petal, but with 5 kids when do you have time?!?
Lulu Yep, welcome to night sweats...perfectly normal whatever normal is when you have RA. Most people do go into a type of remission when they are pregnant...Sheesh, makes me want to be pregnant FOREVER. As for as herbal remedies and change in diet, good luck to you hon but in my experience it's going to take a heck of a lot more than that. I wish it was that easy, we'd all be living the good life...pain free. I don't recall, have you been to see a Rheumy since you've come out of remission? If not, you probably should. Try to get some help before the nasty RA destroys your joints...which can happen very quickly. Welcome to the board and take care. Peace & Love...Neasy Hi everyone, THANKYOU all soooo much for replying to me. I can' express how much youve helped. I hate the thought of you all having this nasty RA too, yet i guess in some strange way its comforting to hear people experience the same symptoms... Well, after alot of persuasion from my (wonderful) parents and hubbie I went back to my Consultant whom I last saw 18 years ago!! It was very emotional actually and i'd made myself very scared ( i am a born worrier). He was so very kind and after looking at my horrifically swollen knees and elbow said straightaway i should be back on Azothripene (excuse spelling). he said it is perfectly safe and has helped me in the past. He also told me a few home truths about natural med, ie it will NOT help RA, which is very usually genetic ( my Grandmother had it badly) and it diet usually helps osteo not RA. All this, and more, has made me decide to def go back on,I have a busy, full life and its no fun being crippled by RA, as so many of you know. RE my knees - yes oddly it all began way back when at 9yrs old i had a bad fall in a gymnastics exam, two days later both knees were balloons, but all the Drs said it was a coincidence and true enough it stayed..... Oh and thank God the Dr said sweating/fever is very very common because of all the inflammation. Thankyou sooooo much for all the replies, they mean alot to me, Love Petal I'm off my meds Petal due to a recent infection and the past few nights I've been waking up with hot flashes pretty badly. Comes with all the other "Flair Symptoms" I suppose. As for the meds I'll say it like this, I've said it before but I don't think I'll ever get tired of explaining it this way: One of my biggest fears in the world is being involved in a serious car crash. I'm not sure why...just one of those fear, ya know? ( Far more people die everyday in a car crash than die of RA or any medication related to RA) ANYWAY; Yes, I have this fear, but I go out and I get into my car every single day. Why? Because my life depends on me having transportation. I have to go to my job. I have to drive home, I have to go get my kids...and those are just the have to's. Forget about all the things I drive to that I just want to. ANYWAY; my point is I do all this everyday risking life and death because this is what it take to lead a normal, happy life. I look at my medication for RA the same way. It's just another thing in my life that I have to do to carry on a happy, normal life. Yes; my life isn't exactly "normal" but it is happy and I do lead a fairly normal life. The medications are a risk; but I'd rather spend the next 20 years of my life living happily and relatively normal than the next 50 years stuck in a wheelchair crying and complaining everyday because I'm crippled and in pain. It's not just about quantity of life for me. It's about Quality of life. Putting off taking the proper medication out of fear is a big mistake. Just ask those here who didn't seek treatment until it was too late. It can't be reverses. Time is not on your side with this monster. Hi, wayney; I had no idea about this, but thankyou for telling me. As a child it only affected my kneesbut recently ( and definately no longer a child!) its affected other areas. Where is your RA? Yes i agree with what you said, Lovie, and i think one needs to remember that quality of life is important. But are you saying that some meds can shorten your life?? Petal Good to see you Wayney. For you newbies that don't know our Wayney yet; she's our resident expert. Most of us spout off about our personal experience...and although she's got plenty of that to go around she's also got facts and figures to back it all up. If there's something you need to know...Wayney will know it; and if she doesn't she'll find out before you could ask twice. We depend on her to always get us the straight truth...good or bad. It's not always sugar coated
Hope you're feeling better Wayney and not over doing it. We miss ya. Lovie Petal; Don't let that distract you. Yes, as always Wayney's right on tract...but then again there are numerous things that can shorten your life. RA itself could shorten your life. You can't be distracted by that. We've had some who have gotten pissed off and left the boards for even mentioning that in the past; but most of us here choose to know all the facts and form our own opinion on how to manage it. RA left untreated in my opinion can leave you wishing you were dead. Period. That's all there is to it. Some treatments are certainly more aggressive than others. You may not require that sort of treatment. I went a number of years on the less invasive treatments. Not everyone needs to start out using them. If that's the case with you; by all means put that off; but if your doctor recomments it's in your best interest...and your trust your doctor, take his advise. Sometimes all of our well intended research can leave us more confused than ever. Try not to get discouraged. It's to your benifit to know as much as possible...Knowledge is power!! Oh Rox~ I don't know. I've finished all the antibiotic and the 10 course of predisone but when I talked to my RD yesterday he told me to wait. I've still got some congestion; although it is better he wanted me to wait and see what happends with this just to make sure I'm over it. So...I'm just not sure. I've done fairly well; the predisone has helped me...but I finished it today; and as all you know once you start cutting back it does little good. Now I'm done...so I doubt I need to explain exactly what's happening now. Thanks for your concern as always. It means alot to me. Good to see you Wayney. For you newbies that don't know our Wayney yet; she's our resident
expert. Most of us spout off about our personal experience...and
although she's got plenty of that to go around she's also got facts and
figures to back it all up. If there's something you need to know...Wayney will know it; and if
she doesn't she'll find out before you could ask twice. We depend on
her to always get us the straight truth...good or bad. It's not always
sugar coated
Hope you're feeling better Wayney and not over doing it. We miss ya. Lovie lol...I did indeed know better. I know all too well about the husband bringing how the funk. My whole ordeal started with my "Lovie" being sick and me trying my best to be the sweet little wife and take care of him for a change. He was over it in about 5 days....a week later I had it. Fast forward a month and I've got more problems than I care to discuss. Gotta love em!! You hang in there girlfriends. Keep sharing your work with us; we're so proud of you!! That's what makes you such a valuable resource. You can't ever learn too much. How's Bastian doing? Well I'm not a fan of the "Growing Pain" explanation. (I know you aren't either) They told my mother the same things when I was young...and I still feel like the growth deformity in my legs when I was younger has to have something to do with RA. Never once was it mentioned though; and I guess we didn't know enough to investigate further. Fortunately you do. I know you'll be on top of it. He's lucky to have such an advocate in you. Hi again, Could I jump in and just ask about what you said about growing pains? Did you mean sometimes Drs could overlook RA as growing pains? Also, do you all have relatives with RA? I understand about what you said about the quality of life and being on longterm meds. I am slightly worried now that (hypothetical, I know!!!!) i will need stronger and stronger drugs...But as far as i know at this moment in time i am welcoming the meds as this RA is crippling, my thoughts and prayers go out to you ALL, Love Petal The more I read the better I fit in with all of you. Growing pains and screaming leg aches in the night. Yes me too. And my brother. But he doesn't have RA 'just' OA. I have read that RA shortens your life by 4 years. (Smoking shortens life by 7 years!) I've also read those on MTX out live those just on NSAIDs Dear everyone, crikey wayney, thats terrible about the growing pains that weren't really growing pains. My daughter (now 7) complains at night about terrible pains in her legs. She began a while ago (about 3/4yrs) and Doc said Definately growing pains etc and to rub them etc etc. Since my RA has returned so badly she's waking up again and saying it. Could this be connected?? Of course being 7 she can explain herself and doesn't complain during day atall. With RA being genetic how likely is it that our children will get it? Do you know? My Grandmother had it but not my parents. Take good care, still waiting my meds and its PAINFUL!!!! Love Petal Petal~when I was young I had the same thing. Waking in the middle of the night in great pain...the doctors blew it off as "growing pain" as well. I remember my mother ironing towels and wraping them around my legs to ease the pain. When I was 12 it was discovered that I had a growth deformity in my legs. One leg was longer than the other and I had to have surgery to correct it. I've recently read that JRA left untreated in children can cause such growth deformities like I had when I was younger. Never once was it mentioned when I was a child that I could have RA. I don't know if I did or didn't; but I find it hard to believe that the growth problem in my leg isn't somehow related. My Grandmother had very bad OA; but they never dxed her with RA. No one else in my family to my knowledge has RA.
There are three types of juvenile arthritis. Pauciarticular, polyarticular and systemic.
Pauciarticular typically affects less than 5 joints. More
than 5 and it's poly, and if more that the joints are affected, such as
eye, heart and lung involvement, its systemic...systemic also has other
components such as higher fevers and a rash that are not common in the
other 2.
Pick any joint you like and I'm probably affected there if not by RA,
then by the fact that after 21 years I've got both OA and osteoporosis,
not to mention, FMS, possible IBS, Sjogren's and maybe some others
thrown in. Actually, I probably have more joint damage than
actual RA activity. But it's painful too.
I was dx'ed at 7 with polyarticular. Went into remission, came out after I had my son.
RE: meds shortening life....I look at it this way, without meds, you're
always at increased risk for nasty complications (lung and heart
involvement) but some meds cause those same complications as
well. So take the meds, have as high of quality as you can.
Lovie,
You're cracking me up here!!! Expert? Hehehe, thank you for
the compliment. But the real reason you're cracking me up is the
thought of me not over doing it??? ROFLMAO!!!!!!!! It's not
in my nature to take it easy...even sicker than a dog, I over do.
I've sorta come out of my lovely
little (HA) flare. But went right into a nasty cold. We're
talking rather have the flare back cold. I'd hoped to avoid
it or limit it to a head cold...not a chance...from now on when hubby
brings home sickness, one of us is sleeping on the couch!
I do have to say you're definitely right about sugar coating...I think
that being fully informed allows us to make the best decisions about
our care (or in my case, lack of). One of my closest
friends who has had RA and all the wonderful associated things with it,
including pericarditis and all kinds of other things was just given the
news that despite having treated her RA fairly aggressively she is now
considered a burnout case. So, it's now just a matter of treating
pain, keeping as much movement as possible, and keeping inflammation
down until each joint needs replaced or fused. So, that has kinda
gotten me down...did not surprise me. And actually, I'm
rather thankful that since I've never had aggressive treatment, I'm as
ok as I am. EXplains why I'm so adamant about early, aggressive
treatment. Also, I got in the habit as a kid of being told
everything. My Mom wouldn't allow docs to keep things from
me. So, now I either annoy docs by being knowledgeable or they
think they don't need to inform me of things. Which ticks me
off.
Sorry, I digress as usual....also (more digression and some bragging)
I've been hard at work on my first solo "special report" for my
newsletter group....so that has been time consuming as well as trying
to move my website...developing another for my mother, keeping up with
my mod. duties on my group, and oh yeah, chasing a 3 yr old. Not
overdoing really!!!!
hugs, wayney
hugs, wayney
Just a wee silly bit of info I got from the midwifes - it is common to
have night sweats in the months after having a baby because your
estrogen levels are dropping - same as the menopause apparently - just
thought I'd mention it because it happened to me - not nice.
yes many times docs say JRA is growing pains. when i first
started having problems (21 yrs ago) i started with waking up at night
screaming my legs hurt...then i had a trigger finger in my rt ring
finger. my mom took me to a GP... an old country doc as we lived
in a small town that had none and the next town over did....he needless
to say said that all that was wrong with me was growing pains... but
with the trigger finger...then i also developed a ganglion cyst my mom
didn't believe him. the only thing that helped my legs was rubbing
them. so my mom took me to a hospital...who refused to touch me
after their initial exam. they immediately referred me to a
children's hospital where i was promptly admitted for a week for major
tests. i went home with a diagnosis despite my bloodwork being
completely negative.
forgot to add that as you can probably tell from my earlier post, i'm
now seeing my son with pain and all i'm getting are these
explanations...growing pains, he wants attention, or he's tired
and can't express himself... but at least he is being seen by an ortho
who is keeping an eye on him. and i completely discount the can't
express himself theory. despite his being 3...he's very good at
expressing himself...uses words not normal for his age and does so
correctly.
i know many people who have been dx'ed as adults with RA that looking
back have said, i hurt like this as a child but was given the growing
pains excuse.
the issue with your daughter could be anything. my unsolicited
advice...speak to her pediatrician again. take notes on when it
happens, what she did that day, etc. that's what i've been
doing. bastian's ped. did agree with me that this needed checked
into. so he sent him to a ped. ortho who said things look fine but he
wants to watch him.
after his appt in june, he was fine for a bit, but i decided this month
to write on the calendar when he complained of things. he's not
only complaining of leg pain at night. his is when he wakes at
times, he has hand stiffness as well...things like that.
hugs, wayney
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