I am a 35 y.o. female. For the past 15 years or so, various doctors have been telling me that I have some type of autoimmune disease. They were basing their opinions on blood work, mainly a positive ANA, and other things. (The last ANA I personally saw the results of was done 8 years ago and it was 1:320. From my research, it seems that some people don't even consider that very high.) The doctor I have seen for the past 2 years has finally told me I have RA. At first he thought fibromyalgia cuz my rheumatoid factor was negative, even tho he was almost positive it was RA. Nothing we did to treat it helped. He felt sure I had some kind of arthritis going on. Last year he did more blood work. My CCP level was elevated so he said I def have rheumatoid arthritis. Can't remember my exact level now. Does that elevated level mean that I DO DEFINITELY have it?? He also did x-rays of my hands. Didn't say much about em...just that they showed what he expected and that my hands would def get the worst of the RA and I would be having lots of problems with them in years to come. At this point, my hands are terrible. Some of my knuckle joints are starting to look disfigured and the HURT. Sometimes I have trouble opening a bottle of medicine or a jar. I AM ONLY 35 YEARS OLD! The pain in both knees is nearly unbearable at times. Recently, my 3 middle toes on each foot have been hurting terribly upon my getting out of bed. Occasionally, like today, my elbows hurt. (They are KILLING me today.) Sometimes my ankles hurt. My neck and back also give me fits but not sure if it's related to possibly having RA. I feel absolutely awful more often than not. I stay tired and generally blah feeling. And living with near-constant pain is getting on my last nerve. Not to mention the fear, anger, disgust, and shame I feel when I can't do something like open a jar or go bowling with my family. (Sticking my fingers in that ball and trying to throw it then was excruciating, not to mention the actions of tossing the ball were very uncomfortable on my knees, etc.) I have read that with RA you go through flares, but mine doesn't really appear to do that...I don't guess anyway. I have periods where more joints hurt and/or hurt worse, but my hands and knees for instance hurt all the time. Is that typical?? Here's the reason for my posting: My doc got the CCP result, told me that I def do have RA. He then proceeded to tell me that the meds to treat RA are almost as bad as the RA itself and that he would be very reluctant to put me on any of them, especially at my age. He said that I need to just stay very active, take over the counter meds when necessary for pain, and try to live as if I don't have it. He told me that he wouldn't consider treatment unless and until I get to the point where I just cannot function. He told me that it's almost a given that I will reach a point where I can't use my hands and where I will have trouble functioning. He said there's no way to know how far off that is, said things may not get any worse for years or they may get really bad in a matter of months. So I am left with QUESTIONS!! ( I really think my doc just doesn't want me to freak out over the diagnosis and kinda throw my hands up and say "Oh well, that's it, I have this terrible thing and can't function now." So he's trying to be really low-key about it all.) (1) Do I def have RA based on the CCP result?? (2) What does my future prognosis look like?? I am a teacher...HOW can I function without the full use of my hands??? (3) Should I seek the opinion of a rheumatologist just to see if I can do anything more than I am doing?? I just need info and advice from people who have been here cuz I am starting to kinda lose it. I mean, a year ago, I cudda bowled with my kids and now I can't!! When will the day come when I am unable to open a bottle of medicine permanently?? UGH! I need the guidance, wisdom, and advice of those who have been where I am!
Hi,
I too was not diagnosed for many years. I have RA, PsA and Sjobrens. The BEST thing you can do is go and see a Rheumatologist. RA CANNOT be diagnosed solely on bloodwork alone. It takes lab work, a full history and a complete physical. Please see one before you worry too much! RA affects everyone differently, your PCP cannot predict the future anymore than I can. The good news is that if it is RA, there are lots of new drugs on the market that can slow or stop the damage! Please see a rheumy and get an accurate diagnosis first, they are the only ones that will be able to help you the way you need to be helped! I hope you feel better soon.
Brad
I definately think you should find a rheumatologist asap!!! Your desease will only get worse and the meds will help stop the progression and most of the pain. I was diagnosed when I was 30. I have been on alot of the meds and just recently found the right combination that works the best. He is not treating you, your disease or your pain. You should not suffer any longer. Your age has nothing to do with taking any arthritis meds. I am now 35 and never had an issue other than small side effects. Get yourself to a rheumatologist soon.
Thanks so much for you advice. I am just so down today. Really depressed. I am in so much pain, more than usual today and feel as though it will never get any better. All I want is to feel decent again at least. Considering going to the Stat Care clinic, but that's more for sudden illeness and people who couldn't get in to see there regular dr. I'm afriad they will look at me and automatically think I am a whiner wanting pain meds or something. Just so miserable. Not usually like this at all, but today is just particularly bad. :-(
Plz send me a private msg if you still need someone to talk to.
Depression and RA and pain are best friends. We will listen until you can get to your rheumie.
Ronie
Hi Krushing
I can't believe you have been fighting this for so long with no answer. Your symptoms sound like RA but they could be other things too. This stuff tends to vary tremendously from one person to another. From what I have learned you can't go by just the lab work alone. Not treating you and telling you to try to live as though it's not there is like saying " stand in the street and wait for the school bus to show up". You really need to see a Rheumatologist, help is probably there but it can take awhile to get on the right meds. to get you comfortable. Start Now.
Best of Luck
Chuck
Hi krushing,
My first word of advice - GO TO A RHEUMATOLOGIST!!
You obviously have something going on whether it is RA or some other rheumatological or inflammatory disease. A rheumatologist is the one who would make that diagnosis.
Second word of advice - START TREATMENT!!
After you have that dx, please do start treatment. There are drugs now which really do change the course of the disease. My rheumy immediately started me on methotrexate and a couple other oral drugs. It made a huge difference in only a matter of weeks.
Also after you have sought the expertise of a rheumatologist and have started treatment, consider asking for some occupational therapy guidance. Ask for advice on joint protection. I believe that doing this early on helped me to not put my joints under too much strain and cause more damage. That is important.
Please know that it is completely understandable to be depressed and angry when you don't feel well. The sense of loss can be as painful as the pain itself. The wondering if you will never be able to do what you once did.
I am a pianist and what led to my RA diagnosis was months of what my doctors thought was severe carpal tunnel syndrome. Before considering surgery, the hand surgeon gave me steroid injections in my wrists. I couldn't even open my hands at the time much less use my fingers. It was this surgeon who referred me to a rheumatologist because he believed I might have RA. Thank goodness.
I continue to play piano and french horn. I continue to teach private music lessons to about 20 students. I can still type which certainly helps with freelance writing.
You never know where you will end up. Seek a specialist and go from there.
I wish you good luck and please let us know how you are doing.
Thanks so much for taking the time to reply to my plea for help! 
You have def made me feel more hopeful! As a musician, you use your hands even more than I do as a classroom teacher. And it sounds as tho your hands might have been in even worse shape than mine are. (And I thought MINE were pretty bad! LOL!) So to know that you found relief gives me great hope! I am more determined than ever to get help now!
Okay, Before I say anything else that says go see a Rheumatologist. I want to say, GET AWAY FROM WHATEVER KIND OF DOCTOR THAT IS WHO TELLS YOU HE WON'T DO ANYTHING TO CONTROL YOUR RA!!!!!!!
Okay yes, we have flares when our RA is under control. Your pain is constant now because it is not controlled. Like a spoiled rotten child it is is having a good time running amuck and it will doesn't care what it will destroy while it plays!
It is absolutely ridiculous for anyone who calls himself a physician to say he will not give you anything to control your RA until it is too late. If you control it now, you may not be deformed. Control it and you can be active. Control it and you can live a somewhat normal life for years. It only took my RA 2 years to go from a remission to painfulling twisting my hands all sideways and whichways because I lost insurance for my meds. No you cannot function without help without your hands. But You don't have to let them become deformed.
No the meds are not worse than the disease. It will take a while to find the ones you need and the correct dosage and some may make your sick if they do not agree with your system. But those can be switched. but NO NO NO NO NO. THEY ARE NOT WORSE THEN THE RA.
Please write us back and let us know when your appt with a real rheumatologist and caring physician. RA does not have to be scarey nor as painful as it is for you right now. RA'ers are very stong willed individuals. We adapt and overcome. if you need help looking for a good rheumie in your area give us a holler and we will help you look (there is a private msg section on the site if you want to contact any of us). There is no need for any of us to suffer.
Sending you strength,
Ronie
Thank you for taking time to respond to my post! You and the others who replied gave me the one thing I needed most right now at this unusually low point...HOPE. I have reached such a point of despair and become so fed up with how I feel and I had kinda resigned myself into thinking it will always be this way or worse. All of you have helped me to see that there is hope for me to feel better. Now if I can only manage to get a relatively quick appt with a rheumatologist!! I will def be posting back when I find out something!
Hi there, I can tell you I was diagnosed with JRA, which as an adult it will not show a RA factor, so you probably had it in early teens, on the weekends when you could sleep in did you maybe until 2 in the afternoon?, it was recovery time, I was active until about your age now, I'm 58 today and wish I was helped before having to live in pain everyday. For the RA I like enbrel twice a week and take hydrocodone at night for the pain of Fibro, but it's a coverup, someone today told me of guaifenesin for the fibro which can be triggered by RA maybe you should read about and try. Don't do what I was advised, cut back on activity , take it easy and slow, that was a huge mistake, now I'm flabby and need to start over getting fit, take matters in my own hands if the guaifenesin works with some relief. Sorry I can't be more help, hope it shed some light. Just don't let it progress without fighting, it's harder to help yourself in middle age....Diane
Thanks for your reply! One thing that really stands out from it is the thing about sleeping. I was VERY active and felt great...until I hit the teen years. I have always blamed my probs on hormonal changes and stuff. It was like I hit puberty and BAM! I felt bad, tired, sluggish, just not-good ALL THE TIME. And I did sleep a LOT. I would be so worn out when I got home from school that I would crash and felt like doing nothing else. By my senior year, I missed abotu as much school as I attended, partly cuz I stayed so tired. I just didn't feel "normal," or like what I figured others my age did. I didn't have alot of severe pain, just felt UGH and bad. Around 20 or so I had the first major blood work done where my ANA was positive adn C-reactive protein was elevated and docs started telling me I had something auto-immune going on, they could just never pin-point exactly what. There have been a few points in the past 20 years where I felt really great tho, for a few months at a time. But it's always back to that UGH, BLAH, YUCK feeling eventually. I go to the dr. Tuesday and pray things only get better from here. I just have to get something to get some relief. I am so tired of hurting like this. For instance, I have spent several hours over the past few days organizing and re-filing a lot of my resources for school (I'm a teacher). My right hand, wrist, and neck are hurting so bad I can't stand it now. UGH!! My doc did tell me that the msot important thing to do with this is to STAY ACTIVE. He said he couldn't stress it enough, cuz if I don't it will get to the point of disabling me much quicker. And I totally agree and def want to keep going full-force. However, I have to have a little medical intervention to make that entirely possible. And I didn't really know RA and fibro could co-exist. I was diagnosed with fibro before the last test ofr RA came back positive. And I def think I still have some pain and discomfort that is not just from RA. Maybe it is fibro. I take it that they didn't treat you early enough. I shudder to think of what my life will be like at your age if something doesn't happen now. I hope that you are able to keep it under pretty good control from here on out at least. Good luck!! Kara
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Thank you for your reply! I am wondering if I also don't have Sjorgren's as well, but have never discussed that possibility with my doc. Really don't wanna have ANYTHING! HA! If you don't mind my asking, what is PsA? Don't think I have ever hear of that.