Q: I feel like I'm in limbo. I have either PA or RA, but nothing to confirm which one it is. Is this normal? I also have FM but not muscle pain or fibro fog symptoms. Is there a way to know for sure?
Hi, Daisy,
I can feel your frustration, and I have to say that I can relate. Unfortunately, a lot of us with seronegative RA have experienced the same kind of thing you are talking about here. I have seronegative RA, OA, and Fibro. The OA and Fibro Dx came quickly, but since I saw a couple of not-so-hot RD's the RA Dx took years. I saw a new RD last May and she Dx seronegative RA at our first visit. One good thing is that the treament for PA and RA is essentially the same. If you are not comfrotable with your RD, I suggest you seek a second opinion. Autoimmune diseases are difficult to diagnose. They have overlapping symptoms, and if you have seronegative RA, it seems to take even longer. It is very important to start treatment as soon as possible to stop/slow joint destruction. Because of my delayed diagnosis, I have permanent joint damage, and I don't want that to happen to you. You might want to check out these posts: Sero-Negative RA: Early Symptoms, Denial & Diagnosis, and 5 Things to Look for in a Rheumatologist. Please let us know what happens with your RD and how you are doing. Welcome to Health Central!
Peace,
V
I'm sorry you're having a rough time getting a name for your symptoms - it can be such a relief to finally know what's really going on. I'll try to help you as best I can.
Approximately 20-30% of people who have RA are seronegative, that is they don't have a positive rheumatoid factor. In terms of your finger joint... Many rheumatologists feel that it can't be RA if the DIP joint (the last finger joint) is involved. Even Johns Hopkins claims that there can't be any DIP involvement with RA. To many of us who live with the disease, this is pure nonsense. So many of us have involvement of that joint and to me, that's clear evidence. As you seem to not really trust your rheumatologist due to a number of other factors, I would suggest that you get a second opinion. It is quite normal for people with RA to have to try out several different doctors before they find a good one who will make a valuable addition to your medical team.
It is also normal for it to take a while before you get a definite diagnosis and as mentioned above, sometimes it takes seeing several doctors. RA can be difficult to pin down, especially in the beginning. Whether you have PA or RA, well... We have a good article with an introduction to psoriatic arthritis and according to that, PA usually presents as seronegative, but on the other hand, so do up to 30% of RA cases. As well, in about 85% of PA cases, psoriasis comes first. If you don't have psoriasis, then the numbers would suggest that you probably have RA. Again, however, it's hard to say one way or another (especially because I'm not a doctor). I recommend that you check out that article for more details on PA, as well as our basics of RA and psoriatic arthritis areas.
In a way, I'm not sure it matters. To my knowledge, PA and RA are frequently treated in similar ways, especially when the primary symptoms of PA is joint involvement. Maybe the focus should be more on managing the disease rather than defining what's going on. That can be done later - right now, you need to protect your joints from damage.
We also have an area about fibromyalgia on our Chronic Pain site that can give you more information about the condition. I have fibro, as well as RA and although I have to yet again say that I'm not a doctor, the fact that you don't have muscle pain or fibro fog sounds to me as if... Well. Let's just say that fibromyalgia is a bit tricky to diagnose, as well. RA can also cause inflammation in muscles, tendons and ligaments and I wonder if it's possible that your symptoms may be related to the overall level of inflammation and disease activity, rather than fibromyalgia. However, in addition to not being a medical professional, I don't know enough about your case to have a truly informed opinion. As you look through the fibromyalgia, PA and RA sections, it's quite possible that things will become clearer to you.
You are at the beginning of your journey with that autoimmune disease and are very quickly learning that being informed is a prerequisite for this role. You need to learn good self advocacy skills, hone your research skills and be very clear in your mind about what you expect of a doctor. You also need to trust your instincts - you are the expert in how your body feels, so trust yourself and find a doctor who trusts you, too.
Good luck! Please let us know what happens?
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Thanks, V. I am under treatment. She basically said the same thing and I've been taking mtx since Sept and I just did my 3rd injection of Humira. I'm having problems with side effects despite taking both folic acid and leucovoran (sp). Since pain meds don't work for me on my joints, getting treatment was a priority. thanks for answering, I do appreciate it!
Daisy