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YESSSSS! You have just very nicely summarized something I’ve thought but never put into words. My pain does not relate to the swelling or lack thereof in my joints. It has to do with something else – the inflammatory process, perhaps, or maybe the nature of pain (NOT pain intensification syndrome – whatever that is).
Rheums and Pain people need to work together to discover and define this problem. It’s something that overlaps their domains. I think, and I may be wrong, but I THINK there is an inflammatory substance that affects the nerve endings themselves and causes the horrible pain we experience when there is no objective evidence of it. It will be hard to find, but I think that is what it is. And the same, or a related, substance is active in fibromyalgia. I believe it even may be at the very basis of the autoimmune process.
Here’s a link to another article about this very subject!
http://www.medicalnewstoday.com/articles/208119.php
Cheerio!
Elizabeth AKA Turtlemom
Elizabeth, I did go to the poster by Vibeke Strand and I hoped to post on that one soon too, with some responses from her. The numbers from that study that are most intriguing to me are about how patients are private about their pain levels. And of course the levels themselves.
Physicians need to get off their high-horse and engage patients systematically in their Dx and Tx. That said, it’s also reasonable to keep open the option that RA patients may have more than one illness going on simultaneously that may cause symptoms including pain. Moreover, different RA patients may have different secondary/tertiary illnesses, making it impossible to lump all RA patients into the same Dx and Tx categories. Additionally, RA appears to be so complex, it’s reasonable to imagine there are several different diseases with differing etiologies lumped into the RA umbrella. When trying to facilitate a physician’s Dx and Tx, start with absolute factual information and then work outward from there, leaving all other options open. IMO, RA is likely several (many?) different diseases with several (many?) different etiologies, symptoms, explanations, and thus requisite treatments. BUT, I am not a physician..
Thank you for this incredibly thoughtful post, Kelly. It stands to reason that, if patients can be diagnosed absent the standard positive markers for inflammation (RF, CRP), then patients can experience pain and inflammation when those same markers are absent or reduced.
Further, it is clear that the measures for disease activity are flawed – if science has only identified a fraction of the possible markers, then current medicines may only treat that known fraction. As in the past 20 years, the next 20 years could bring a paradigm shift in measurement of disease activity and in the definition of remission.
Patients would be best served if all doctors were mindful of these facts. I believe the good ones are.
Thanks again (and again) for bringing us this important information.
Thank you Jackie. I can’t tell you how good it is to have such smart readers. Except it makes me have to try so much harder too. LOL.
Hi Kelly – I TOTALLY agree! I was one of those with low markers in the blood tests, little swelling, but could barely walk – well, OK, I walked like a duck. I could barely hold a coffee cup, laundry was exhausting and I had to sleep sitting up because my shoulders hurt so bad. Fortunately for me (I use the term “fortunate” loosely), I had severe anemia along with hypothyroidism, so my Rheumatologist was confident in a diagnosis and I was able to get treated – in spite of lackluster blood work. But it took 7 months for me to get to the Rheumatologist and a whole bunch of head scratching and sidelong looks. Now that I’m being treated, I feel so much better – so how much could all those tests have meant in the first place?
This is all so very interesting. I am still not out of pain and that is with biologics, MTX and prednisone. But there is no swelling anywhere. I have had this diagnoses of RA for 10 months and though I am some what better, I keep waiting for something to “kick in.” I always felt that my type one diabetes of 41 years was the reason somehow for why most of the meds are not working. But, no one seems to connect this other auto immune disaease that I have been living with. So glad for all of this information. I too went through a lot of tests too and it all seemed such a waste of time.
Di, I think it must be genetic. Some of us are just not big swellers. Some people have told me they also didn’t swell for other things & that’s my experience too. I didn’t swell during pregnancy or with impacted wisdom teeth, etc. Some of us also do not respond to treatments. I don’t have diabetes, but I dont respond to RA drugs either. Something must be similar about our types of RA.
Seems suspiciously too much like fibromyalgia, just without sticking that name on it. central sensitivity/symptom
intensification syndrome
http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm
http://www.webmd.com/pain-management/guide/central-pain-syndrome
Turtlemom and Robert may be onto something.
Di, see this article:
New Test May Help Patients With RA Avoid Useless Treatment
http://www.medscape.com/viewarticle/732600?src=rss
Oh yeah, meant to add that perhaps MRI’s assessing synovitis and bone marrow edema/inflammation lesions might have been helpful in that study. Saw an interesting one on knee pain in osteo that the pain tracked with the bone marrow lesions and not the swelling and such, and the pain got better when the bone marrow “lesions” receeded. I think the bone marrow inflammation might be the key to experiencing increased symptoms or “flares” with certain changes in the weather.
Pain is such a complex thing. As we all know pain is associated with an injury and/or inflammation, but some experiences of pain can also be mental. But don’t think that a mental cause of pain is a mental failing of an individual or that that person is hysterical or making it up. The brain and nervous system are very complex and people have have no more control of their nervous system and certain parts of their brain than they do over their immune system. None of us asked our immune systems to attack our joints and organs. Just like people that suffer mental aspects of pain can’t necessarily control it. It happens and needs to be treated.
Personally in my RA journey, I’ve had a lot of pain in the absence of overt signs of joint inflammation. I’ve had swollen, red, hot, stiff joints with out much pain. I’ve also had inflammed joints with a lot of pain.
My doc and I always talk about inflammation and pain separately. Treat the inflammation and disease activity to save my joints. Hopefully that will lead to less pain, but if not treat the pain too.
AGREE WITH @RaRAP! I don’t have RA, but with certainty, there are both inflammatory and non-inflammatory sources of pain. MOREOVER, Once the chronic pain circuit has been established, even if caused solely by inflammatory pain, there is no longer a requirement for inflammation to have pain. PAIN = SYNAPTIC MEMORY!
Sorry, in the previous post, I should have said: “CHRONIC PAIN = SYNAPTIC MEMORY”. Acute pain mechanisms are different from those of chronic pain.
Kelly,
I’m so glad to read this posting and know that I’m not the only one who does not swell when I have pain. I don’t show the typical disease markers in my labs either. Recently my labs showed I was in remission, but fortunately my doctor told me that I can’t be in remission if I still have the pain that I’m experiencing. Funny enough, she did happen to find some swelling in my ankles that I didn’t even notice! I’m lucky to have found her.
Amy! That sounds like my currrent smarter doc too. Finding swelling that is subtle that we just accept because it comes on gradually & realizing that what the patient says matters more than the labs. Did you watch the video where I talked about the new doc versus another one…
I have had RA since I was 35 I’m now 62. I have tried everything you can possible name.. 2 years ago the ORENCIA infusions stop working I had had almost 5 years of almost no swelling and pain free. The pain came back worst than ever. So my Doctor put me on Rituxan infusion every 6 to 8 months with Methotrexate. All of the inflammation has gone away and there is no swelling. BUT THERE IS SOME MAJOR PAIN. How can I be in pain and not have any inflammations.
Dear Juanita,
we hear this all the time. It is possible something else is causing the pain, but after decades with rheumatoid disease, I think you know what hurts you. Even though the external (obvious) swelling is less, that does not mean there is not inflammation inside the joints – where it is less obvious. This has been shown repeatedly in studies with ultrasound. http://www.rawarrior.com/rheumatoid-arthritis-swelling-take-two/