I'd like to hear from people who have RA symtoms, but specialist (rheumatologist) still can't get a diagnosis to confirm RA (or any other similar condition, such as lupus).
In the meantime here's my story.
I’m new to this forum, but certainly my aching and pain are old. I’m hoping by joining this forum, I can hear from people that have very similar conditions to mine, as I’m desperate and in despair for understanding the specific condition I have. I have had this pain for almost 20 years (I’m 45 years old now), and I’m still not diagnosed for any specific disorder. It started as moderate aching in areas around my joints (knees, feet, hands, elbows, shoulders, jaw, etc.) and graduated to unbearable pain in the last 10 years or so. I have all the “rheumatic” symptoms, BUT after all these years (and over 40 tests) of all kinds; no rheumatologist was able to give me a diagnosis. I have expended many many hours reading the literature about all kinds of autoimmune diseases, including rheumatoid arthritis, lupus, and others. The problem I encountered (trying basically to diagnose myself) that I have some (but not all) of the symptoms for any specific ailment. However, I feel that my problem is closest to rheumatoid arthritis and to a lesser degree to lupus. I’m missing the symmetry pattern requirement for RA, as my pain usually starts on one side of my body and moves up or down on that side (e.g., left shoulder then left elbow then knee, etc.) then it may or may not move to the next side. BUT I do frequently, as well, have pain on both sides of my body but at different areas (e.g., left wrist and right hip, etc.). And I do have redness, pain, swelling or heat around the joint (inflammation). I have no internal organs affected, except my eyes and mouth (too dry). Most affected places in my body are hands, feet, and knees. Most recent X-rays showed no damage to my joints, eventhough I have this condition for over 20 years! May be because I was taking anti-inflammatory drugs since the start.
As for the reason I suspect lupus may also be the culprit is that I share some of the symptoms caused by it, such as pain in joints of the hands, arms, shoulders, feet, knees, hips or jaw (except the muscles). The pain moves from area to area and sometime (especially, during the summer) cause localized spot of my skin (often on the palm of my hand) to feel hot, be red or swell. BUT I do not develop fever and loss of appetite, pain in muscles, skin rashes nor any other symtoms typical of lupus. I should also add that this seems genetic, as I have two brothers with same condition (except their condition is much much milder than mine).
I'll be greatful to hear from people that have similar condition, but rheumatologist couldn't give any firm diagnosis.
I hope you have been to a rheumatologist rather than to just a GP. You sound a lot like me. I finally got diagnosed with OA, RA,Fibromyalgia and Sjogren's Syndrome after 8 years of formally seeing a rheumatologist and many more years than that of various joint pain and fatigue. The determining factor was that my blood work after many years of testing normally showed positive for RA (positive rheumatoid factor). Many on this board go through years of not officially knowing what particular kind of arthritis they have. I would say that's the norm. It's very frustrating. My advice to you is to keep detailed accounts of your symptoms. They will vary from doctor visit to doctor visit. Also, ask for notes from all your doctor visits. Take your personal accounts and the notes from the various doctors visits with you to whoever you go to see. Don't count on various doctors and specialists to share their information with others treating you. Eventually, a picture will emerge and you will get a diagnosis.
Many of us have more than one kind of arthritis. Especially with the autoimmune variety (RA, Lupus, Sjogren's, PA.etc, ) they often go together. Often medications are the same or similar for different arthritic diseases,so doctors are not in a hurry to make a diagnosis. They are more interested in keeping you comfortable. The meds for autoimune diseases come with their own risks. If a doctor thinks you have this variey of arthrits, they will be very agressive about medication.
Although I'm not in the medical field, it does sound like you might have some combination of arthritis, maybe fibromyalgia in addition to either RA and or OA. Good luck in your diagnosis, Linda
You may also have Sjogren's Syndrome if you are suffering from dry mouth and eyes.You might check out www.palindromicrheumatism.org
I was first Dx'd with this and then moved into full blown RA. Your story sure sounds a lot like these symptoms and it is a relatively rare AI disease.
Good luck.
I sometimes think it also depends on the doctor you see too. I was dx'ed with RA years ago even before the blood work was back from the lab or my doctor saw my x-rays. My blood work ended up being negative; but by the way I responded so positive to predisone my doctor felt certain she had the right dx.
All these years later the only blood work that is ever positive is my Seds Rate which is the blood test for inflammation. Still by dx'ed is RA and I've been treated for it all these years.
I often wonder had I had the misfortune of seeing a different doctor than I had would they have come to the same conclusion as my first RD? I wonder.
I forgot to mention Soredom~ Antinflammatories would not have prevented joint damage; even if you've been on it constantly for many years. It does reduce inflammation; but does not prevent joint damage.Even though you have the miseries of inflammatory arthritis I'm happy you have been spared joint damage. That's what my RA docs called my condition until erosions showed up around the 4th year. I’m 30 years into this thing, without counting the episodes during childhood. I’m kind of surprised they didn’t give you that label too. It was a catch all for, ‘yes, indeed something is wrong- we can plainly see it’ but clueless as to what category to stick you in for now.
When things are really awful see if you can get a dose pack of prednisone called a burst, if your pain is relieved, and swelling magically vanishes, it will confirm that you do have an inflammatory condition.
Ask for treatment to keep your pain under control, and a periodic check for joint damage. I think any rheumy would be happy to do that for you.
Since you can’t seem to get rid of this chronic condition either, at least you can take heart that your joints aren’t being destroyed.
In fairness to the medical community, I should mention that one rheumy considered that I may have Palindromic Rheumatism, but he couldn't go further, because at that time (10 to 12 years ago) not much information was available about PR. Again, thank you all for your help.
Glad you found some answers to help you. Hope you'll stick around and make some new friends here.
Of all the things that have helped me over the years I really think my friends here and at other simular websites that share the same daily struggles as me has helped me more than anything.
There's just something really comforting knowing that we can come here and talk about what's on our minds. So often we tend to pretend that everything is ok with us and hide our daily worries from our families because we're afraid they are going to one day become weiry of hearing the constant "sick" talk. Everyone here knows that there's not a day that goes by that we're not reminded that we live with a chronic illness. Good days or bad it's always with us. Everyone here understands that and it gives us all a bond that becomes very important.
Hope you'll join us....or at the very least find a simular group that you're comfortable with.
I am doing this we don't know game with the docs now. so for now I am in kinda a limbo unless i change my pcp and start all over again and trust me where I live right now we do not have that many pcp taking new pts so I could end up witha real quack or a newbie so for now Im not switching yet.