Hi everyone!
Man, you guys have no idea how happy I am to have finally have found a message board for RA patients (or maybe you do)! And a wonderful one at that...many of your posts cracked me up - I love the honesty, and the support seems amazing. I already tried joining 2 other websites but no one responds to my messages :( boo...anyway so glad to be here and here's my story...
I am 28, turning 29 this month. I have two kids ages 3 and 8 months. This last sept I woke up one morning and could not bend my fingers, and if I tried, it hurt! Both of my hands were stiff and I simply thought I must have slept on them wrong. But then the next morning the same thing happened, and every sigle morning since with the stiffness worsening.
My right hand is a little worse and it takes both hands about 45 minutes to loosen up in the mornings. Even brushing my teeth has become a challenge, as well as changing and dressing my baby! :( Once the stiffness subsides my knuckle joints just feel sore and tender all day, even to touch. And even after a short nap my hands stiffen up terribly! I have been napping once EVERY DAY for the last 3 monts as well (not so normal for me as I am very active and exercise regularly).
Last week I finally got my butt to the doc (pcp) to see whats going on, realizing maybe its not just a fluke or "phase". They did labwork and said we'll go from there, so as of now I am awaiting the results. The doc said whether the results come back positive or negative he will refer me to to Rheumatologist, based on my symptoms.
Emotionally, I am all over the place. I feel too young and in the prime of life (raising my kids and wanting to have at least 2 more) to be suffering with this. I'm sure so many of you can relate and have words for me. I have never been so conscious of my hands as I am now, it's so weird. I do have one relative, my grandma's sister who also has RA and got it in her late 20's as well.
Really what I'd love to hear is how all your symptoms began? I just can't believe how sudden mine came on. Whether I am dx with RA or not, I am really glad to be here :) please let me know what you think about my story and share how your symptoms's started.
Thanks so much!!
Tara G
Welcome aboard. The people here are great. How it started with each of us varies a bit. Some had problems with their feet or hands first. Others, it was a particular joint.
And it hits all ages. We have several really cool young ones that had JRA since they were kids. They don't know life without it. Then there are young mothers that got it when they were pregnant. It really hits all over the board.
The important thing is to get your PCP to check it out, which he is and get you to a Rheumy. Your hand symptoms sound classic RA. The more aggressive the treatment early one the higher your chance of going into remission --- a goal we all live for. It is important because treatment helps damage from occurring.
Post your questions here and someone will be answering them. Sorry for the reason you coming here. But it is a place you will need if you do have RA. Support is incredibly important.
Hi Tara G.
The sudden onsight of pain is the worse I'd say. I'll never forget the mornings when it began for me. I was 20 at the time, fianlly "on my own" & woke up to some pretty intense pain. I barely made it down the steps. Then to my parents house I went. I remember trying to turn the key in the ignition was the toughest thing ever, I just sat there and BALLED.Tara,
Welcome to the board! I have found so much support and
information on here from so many people.....and a good laugh
most days. My RA started when I was 10, but the onset was
very gradual and took 2 years to diagnose. I had a great doctor
who took an aggressive approach right off, avoiding most of the
joint damage. This past summer, I started with my first major
flare since middle school. Every time it starts calming down,
something seems to set it off. Although we don't have any kids
yet, my husband and I are looking to start in the coming
months. I want to make sure my RA is back under control so I
can get off most of the meds before getting pregnant. Make
sure you share your concerns about having more children with
the rheumatologist so he/she can treat you aggressively but
keep that in mind. Like Deanna said there are some of us "kids"
on here who haven't really known life without RA and others
who have a lot of experience. We'll always be here for you to
ask questions. Good luck!Welcome, Tara!! I, too, am very new to this message board but I have already found it to be very helpful and supportive. I'm considerably older than you (61) but my RA came on in a similar way---in both hands. I already had OA and had a hip replacement for that back in 1998. The symptoms of RA (although we didn't know that was what it was yet) came on early last year and it took several months before it was diagnosed. My PCP kept trying to treat my hand pain and stiffness with hand braces and massive doses of Ibuprophen. All to no avail. She thought it was carpal tunnel but I kept telling her my pinkie fingers hurt, too, and supposedly they don't in carpal tunnel. Well, to make a very long story short, when my sed rate hit 98 she finally referred me to a rheumatologist who diagnosed RA after two or three visits. By that time, I could barely walk without aid and my hands were killing me. I am better in some ways now, worse in others, but we are still trying to find the right combination of drugs for me. Currently I'm on prednisone, MTX, and Enbrel. Pain and stiffness are somewhat better but fatigue and general feeling of being unwell are worse. I cannot imagine what it must be like to have RA at such a young age as you---it's bad enough at 61 but at least I'm retired now and don't have the responsibility of raising a young family (although I try hard to keep up with my grandchildren). This d--- condition has brought me to tears more than once, both from frustration and pain. Well, that's part of my story in a nutshell. Please hang in there. It helps so much to have a supportive family---I hope you have that. Good luck and keep writing.
Welcome Tara!
My RA also started rather suddenly and quickly became worse, mostly hands, feet, and shoulders. The first year was pretty awful but I'm happy to say that I'm much, much better now, two years later, so don't give up hope! You have to be patient and persistent to find the medication that works best for you.
Alan
My symptoms first started last year, I was 35. I was also undergoing some other treatments and neither myself nor the doctors realized what was going on. Because of the other treatments and a lot of emotional upset at the time, its hard to say just how sudden it came on. I wasn't dx until this past January. Even still I am seronegative, which means it doesn't show up in my blood so there is always some question if it really is ra or something else.
My x-rays show joint damage and I have all the classic symptoms but its never easy to accept, at any age.
WOW!! Thanks to all of you who responded, and with such kindness. I appreciate every word, for only God knows all the trials you have each endured from suffering this condition.
From previous posts and your stories shared I can see that RA is not always diagnosed at first (based on lab results), despite evident and painful symptoms. It's good to know this is a possibility, regardless of the results the pain/stiuffness in my hands IS definintely something! Even my PCP said they seriously concern him.
Also, when about do docs recommend an x-ray or MRI to see if there's damage?? Is it possible there's already damage even though my symptoms just started 3 months ago?? Perhaps these are questions without answers...? It still feels good to get them out! :)
Thanks again for listening and I'll be sure to keep you all updated...
Tara
Hi Tara,
my experience is very different from most of you. 12 years ago I had an acute episode of extreme pain in most of my joints that lasted about 6 weeks, then gradually subsided. For a couple years I would have a return of the symptoms, but much milder. But as time went by the inflammation set into my joints as permanent residence. I began to have a lot of swelling and pain in bilateral wrists, and it progressed from there. My prayers are with you. You have to be a fighter to live happily with this condition, but it can be done. Just know that you will have some bad days. Get to know who you can depend on to be supportive and non-judgmental. Wishing you as few bad days as possible, and that your good days will be great. auntiannie
Welcome to the board! Your hand symptons do sound classic RA.
I was diagnosed after my last daughter was born in my 20's. Swelling of my hands and feet, joint pain, etc. However, I knew what it was as RA is hereditary on the maternal side of the family. I started out with NSAIDS, moved to plaquenil, and now on humira and mtx.
It is good that you got yourself in to the doc so that you can right away start finding a treatment that is going to work for you. Fatigue can be a constant battle with RA and it is hard to slow down from what you used to be able to do to what your body will let you do now. I know it is hard to rest sometimes with young children, but do it when you can!
Good luck to you and look forward to hearing from you more!
Hi Tara, have you checked out these websites www.roadback.org or www.rheumaticsupport.net ? I hope you do, so when you visit your rheumatologist you can ask him/her about the treatment called AP. it is low cost (compared to most RA drugs) and high benefit. There are many stories of remissions and even cures, which no other RA drug can even begin to promise. Unfortunately, many rheumatologists will not mention this treatment, which is PROVEN effective in NIH sponsored clinical trials. Please look into it. All the best, Pat
Hi wonderful friends,
I am just loving the encouragement and personal stories shared on here...and soaking them all in
Well, I got the long awaited call from my PCP today, and my bloodwork was neg for RA. He then went on to explain about Sero-Negative RA and started me on 10mg of Prednisone for 2 weeks. He said that if I do in fact have Sero-neg RA the Pred will relieve the pain and stiffness completely (yay!), BUT this will also be diagnostic to say that I do have Sero-neg RA, boo. If the Pred doesn't help with my symptoms then my stiffness and pain is caused by something else. So now the next phase of waiting begins. Did any of you have this same thing happen, an experiment with Prednisone to diagnose Sero-neg??
It's such a catch 22, cuz of course I want the Pred to work and relieve my pain, but then what that could mean of it does freeeks me out???!!! ugh. I feel so vulnerable and this is all really affecting my poor husband who just doesn't really know how to accept that this is possibly happening to me
Anyway thats the update for now - I'll let you know how the Pred works, and please keep sharing!!
XO
Oh yeah, Thanks for those links Pat!! I am defintely on that action!
Hi,
I'm new to the site and already I can feel everyones caring attitudes. I was dx 3 weeks ago, but my symptoms developed slowely over 2 years. I lost 35lbs and couldn't gain it back, and i was going on 16-18 hr sleeping sprees, . My whole body just ached and hurt and it feels like theres pressure inside my joints which is what got me to the doctor. I have mild ra but it effects almost every joint in my body, but my toes and fingers are worse.
I love my ra doctor and I can understand the feeling of not knowing because like most people have said, it takes a while to get to see your dr, and get things rolling. I haven't offically started treatments yet (i'm waiting for my script to come). Its a scarry thing to think about and I'm still tring to get my hands around the concept (however some mornings i can't get my hands around anything
I hope everthing