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Thank you, Kelly, for this well-written and well thought out post. I think a lot of the Pain research is a new spin on a very old concept of “it’s-all-in-their-heads”. For example, the concept that in some chronic pain cases the pain stimulus is no longer present is faulty. The explanation that the neurological feedback loop that thinks pain is still present and that is what causes the sensation of pain certainly DOES NOT adequately explain RD pain or the pathology of RD pain.
I’ll look forward to the day when Pain researchers, working with rheumatology researchers, can adequately explain the exact physiological processes involved with rheumatoid disease and how this pathology is related to acute or even chronic pain.
Since the physiology of RD has been historically SO poorly understood, focusing on anything but explaining the mechanism of disease is a waste of time, in my humble opinion. The science of immune regenerative and the advent of Biologics has certainly helped in the understanding of some aspects of the malfunctioning immune system, i.e. that different Biologics are needed that target different molecular processes active in individuals with RD. Now if researchers can track this immune dysfunction and how that relates to inflammation and pain, we might be on to something worthwhile. Until that time, frankly, I wish the Pain researchers would just stop adding insult to injury. I must say, though, that I am thankful we do have some medications that help with pain management.
One of the best articles I’ve read on the mechanism of Rheumatoid Disease is by Hohensinner (2014) “Targets of Immune Regeneration in Rheumatoid Arthritis” http://www.mayoclinicproceedings.org/article/S0025-6196(14)00105-0/pdf
Kelly. It is so nice to see you posting again. You have been missed !!!
This is extremely timely for me Kelly. I am going to a pain clinic next week. My pain is both chronic AND acute recurring. I’m not sure if the clinic will understand the two types together, but my Rheum thinks I need more help than he can give for pain.
I hope it goes well and you can get more relief.
Very timely post. I do not take pain meds for RD but do take Cymbalta daily and a low dose of gabapentin at night. I cannot take advil or celebrex or anything in that class because I took too much advil prior to RD diagnosis and it affected my kidneys to the extent that I developed high blood pressure that I never had before. My GP tested it with me. That leaves aspirin and tynlenol. Not very helpful and not for every day usage.
I am now left to deal with pain which is chronic and with flares can be much worse. And I still flare quite regularly a year and and three months after diagnosis (age 48) though my first symptoms started at 19 in the feet and increased in severity over time.
Rheumatologist started with oral mtx and plaquenil. Mtx made me sick for two-plus days per week for almost a year. She then swtiched mtx to Arava along with the plaquenil. Had an adverse reaction to Arava – swelling in lips after five days of it. Switched to mtx injections along with the plaquenil. Giving myself a shot with a insulin syringe was quite interesting the first time and I am tolerating it better.
I still work and try to be as active as possible. I hosted Thanksgiving today. Had a relatively good couple of days and managed it happily. Last night my fingers and wrists flared horribly to the point I couldn’t make fists and was planning to recruit help for the sweet potatoes and mashed potatoes but I did it! Small triumph.
Now I am on the couch with a heating pad after an Epsom salt bath hoping to feel decent for a four day work trip next week.
I ask what does it take to be prescribed some level of pain meds that wont raise my blood pressure. It is so hard to believe that doctors have a hard time understanding about RA pain and flares!
I eat a good diet, exercise as much as I can, and try to maintain a career and something of a life.
I dont get it.
Cause of pain – my body is attacking itself this is burning inflammation. the inflammation is distorting my joints, Yes! in the spine also. Yes, it is burning pain. yes, it is achy pain. yes, it sometimes is pins and needle pain.
No it is not every part every day. but it is somewhere everyday. IT is acutely hurting and it is chronic in its constant presence.
So it is acute as in a different feeling and intensity at different place. and it is injuring surrounding body parts.
It is chronic as in i know that as soon as i i am on my feet to much, use my hands to much, act like a normal person to much i will be in pain.
I take all the RD cocktails. i am afraid to take any stronger doses . i an afraid what NSAIDs and prednisone are doing to me. so to stop the inflammation there is Ice…
but i can’t cut myself open and put out the fire.
i can’t force my spine back into alignment so pain eases.
And i cannot believe that so much money is still being wasted to prove chronic pain sufferers are head cases.
Interesting articles on pain. I was diagnosed with osteo arthritis 15 years ago. I have had bilateral knee replacement and 5 surgeries on my feet. All were seen as the result of osteo. I had back surgery for a herniated disc but now I still have back pain due to stenosis. So now I have a pain doctor. Then a few years later came the diagnosis of RA or RD. I have always had joint pain.
However the pain from RD is different. I am 68 I have always been an active person. Before I retired 2 years ago I routinely worked 12 hour days, swam, played golf and gardened. I can’t swim now due to rotaor cuff problems and pain in my arm but I walk 4 miles 5days a week.i am fighting this with all I have. I am on Remicade and Methotrexate, but the RD marches on. I had a pulmonary embolus last year which my Primary thinks is related to the RD. I am always fighting to be taken off drugs not getting more, However, I will use medications to help reduce my pain in order to maintain my lifestyle. I never knew there could be so many kinds of pain. I don’t feel sorry for myself, and I wont give up.
Maybe it is brain fog, but I’m a bit confused. Who is saying that with the right RD meds we are out of pain?
I have some constant pain for 10 years. 4 years before diagnoses of RD. I had both knees replaced this summer, seeing a neurologist and having an MRI on my neck and spine. I am seeing a chronic pain doctor. There is not a day I don’t hurt. Some way some how, even with the meds my Rheumy prescribed.
I’m just tired of hurting all of them time. Some of it is mild,but there are times it hurts so bad I just want to roll over and stare at the wall.
Anyways, Maybe I should go back and re read. I just need it cleared up. Sorry.
That is a party line. If your docs aren’t saying that, then that’s great!
Posts tagged as related to the discrepancy between physician & patient assessments: http://www.rawarrior.com/tag/physician-patient-discrepancy/
A few more posts on the topic here if you feel like reading:
http://www.rawarrior.com/some-rheumatologists-dont-understand-how-much-it-hurts/
http://www.rawarrior.com/the-hypochondria-of-ra-pain-do-i-smell-an-elephant/
http://www.rawarrior.com/patients-rebuttal-to-ra-pain-catastrophizing-claims/http://www.rawarrior.com/its-just-pain-right-no-dr-no-its-not/
http://www.rawarrior.com/patients-doctors-differ-on-assessing-rheumatoid-arthritis-disease-severity/
http://www.rawarrior.com/do-rheumatoid-arthritis-patients-have-a-low-pain-threshold/
http://www.rawarrior.com/does-rheumatoid-arthritis-pain-really-hurt-that-much/
This is exactly how I feel, after my first two months of biologics. I’m starting to be smarter about what is really causing my pain, and paying more attention to what my body needs. I chronically have pain “somewhere” each day (the throbbing and stiffness or moving after the sitting), but, it is the acute pain — the stabbing pain — that happens out of nowhere. I stop what I am doing, rest and it is gone. It can strike anywhere or at anytime. A lot of times it is on the stairs and I have to be very careful walking down them. Thank goodness for hand rails, as they have saved me a number of times.
Hi all-I am a pain researcher who has been studying inflammatory joint pain biology for 20 years. I was also recently diagnosed with RA. A few things about the science of pain…..inflammatory agents (interleukins, TNF, MMPs) activate pain neurons in the joint. Even when the inflammation ‘goes away’ there is still inflammation in the joints, it is just at a level we cannot always visualize And so those agents are still activating the pain receptors. Of course this signal is sent to the central nervous system and up to the cortex where we perceive pain. But I guarantee if you cured my RA all the pain would go away. There are changes in neurons in the central nervous system where neurons become hyperactive and this is normal. This happens when you sprain your ankle or when you have RA. Again it is a normal response to injury and in the case of joint inflammation this enhanced central sensitivity is maintained by input from the pain fibers being activated by the inflammatory mediators.
There is variability among people even those without pain in terms so their sensitivity to different types of stimuli. i can give 100 people the same stimulus and some May feel little to no pain and others feel severe or maximal pain. There are so many potential underlying reasons for this variability. Genetics is certainly a factor but so is sex (women have more pain sensitivity than men), confounding other problems like depression or anxiety, how one copes with pain, social support systems, age and many more. Some of these we already know about. Anyone with RA knows that you have to develop your own coping skills to deal with this. All of these things can modify the pain but…..But the reality is that for RA the pain is driven by the inflammation and all those agents found in the inflamed joint, that is you cured the RA the pain would go away. So agreed look for a cure for RA and we can get rid of pain, decrease the inflammation and we should decrease the pain. In the meantime maybe we can get pain researches to come up with treatments for the pain independent of the disease that address additional targets aimed at the joint nociceptors (pain neurons).
I understand the neuro / psychology of pain, having lived with it for two to three decades prior to diagnosis.
My experience with RA is that evidence of it has remained in my wrists and fingers – i.e. inflammation – despite treatment.
It also appears in my knees – usually one knee swells and the other knee has lesser swelling.
I also experience swelling in the calf of the affected knee, which appears to be vascular swelling.
I am tired of doctors telling me that I am not experiencing what I am experiencing. Especially considering I still work and try to maintain the functions for life.
It gets so old.
The fact that I still work in a self-employed capacity and earn as much income as some doctors should say something.
I am sick and tired of chronic pain and RA pain being belittled.
Though I wouldn’t wish it on anyone, I wish my doctors could experience it – just for a day or two – and then they might develop some different ideas about how to treat.
Kathleen, glad to know you’re a researcher. I was pleased to see on your blog that you are starting to be aware of how inappropriate the catastrophizing literature is. The questions on the standard questionnaires are completely biased, use inflammatory language, and miss the point of the experience of pain of people with RA. You make the statement that if you cure my RA I guarantee that the pain will go away. That statement is perhaps being made to show that there isn’t hypochondria going on or an amplified pain response. My point is that NO ONE has explained how the pathophysiology of RA and how ALL the manifestations of the disease lead to pain. There’s the joint issues – sure – but there are systemic issues: low grade fever and flushing; fatigue; flu-like symptoms; organ involvement; bone marrow oedema. Until someone can assure me that the pathophysiology of RA should NOT lead to pain (whatever level researchers find “reasonable” or just the right amount), researchers should STOP with their biases cuz that’s all they’re presenting. The body of literature (that has incredibly faulty assumptions) just gets cited time and time again.
I wish pain researchers would get off the catastrophizing, amplification, centralization theories. Who cares if I have a different response to a heat stimulus. Who cares if I’m fully aware that RA leads to earlier mortality and comes with other life-threatening conditions. These foci are meaningless in solving pain issues and the catastrophizing focus is degrading and dehumanizing.
My 11 year old daughter switched to injections of methotrexate for her arthritis because taking it orally involved 8 tablets once a week…. not fun… the injections went really well for 4 or 5 weeks, easy peasy, no pain, no stress, so happy. That was until the pharmacy told us there is a shortage and we had to change to preservative free methotrexate. Now it feels like I am injecting her with poison. She cries in pain with this medication! It makes me so sad. We are fortunate that her disease is managed well by this medication but oh how frustrating that the version she tolerates without a blink is on “back order” and this 11 year old has to manage her anxiety about taking this medication instead of wondering which type of braid she should wear in her hair tomorrow.
Good Blog thanks for this
Sorry if this is in the wrong place, but maybe some more experienced folks can help me. I’ve been having joint pain for 4+ years, mostly in wrists (the worst), all finger joints, toes and I even have a bunion! 🙁 Most of the time the pain is symmetrical but not always. I’m 31 now.
The “flares” happen maybe every 3 months and last for a week or two. Most of the time the pain is not too bad. Every so often though, I get a bad flare – like the one I’m in right now – but this time the pain is almost 100% in my left wrist. I can’t bend it forwards or backwards at all – I can’t use it to get up off the couch, to roll over in bed, etc. I can feel the other joints a little but nowhere near the level of my left wrist.
I’ve been to two rheumatologists and a couple other doctors over the past 4 years, and every single test comes up perfectly fine. Anybody have any ideas what this could be? I don’t have psoriasis that I can tell, and other than the joints I’m feeling pretty good. I’m baffled!
For Mainer or anyone else who has not been diagnosed, be sure to have the anti-ccp test. Read more about diagnosis here:http://www.rawarrior.com/do-i-have-rheumatoid-arthritis/ & http://www.rawarrior.com/tag/rheumatoid-arthritis-diagnosis/
A situation like the one described in this comment may or may not be diagnosed as rheumatoid by different rheumatologists. We do not all start with similar patterns, but this story obviously sounds like rheumatoid. It can go on like this for years before symptoms are consistent to satisfy a rheumatologist.
I wanted to share this article about a woman becoming a mother while enduring chronic pain. She doesn’t have RD, but she is surely just as disabled. I will be watching for her book on women and chronic pain when it comes out. Please read the article at this link….I’m sure you’ll say that she gets it down exactly right. http://www.slate.com/articles/life/family/2015/01/parenting_with_chronic_pain.html
Hi Kelly!
I am so glad I found RA Warriors. I’ve been living with joint pain and inflammation for 7 years and thought I was crazy. Most of what you describe here on your blog is stuff that I’ve been dealing with. I am positive that I have RA; it’s just a matter of finding a rheumatologist willing to diagnose and treat me. My blood work is always borderline, but I have all of the other symptoms. I see a rheumatologist at the end of this month and am doing tons of research to help me convince her to listen and begin treating me ASAP. I’m worried that, if doctors continue to ignore me, I will have permanent damage.
Part of the problem, too, is that I tend to get frustrated and then drop the ball when I’m feeling better. I am working on accepting that the flareups are not going to stop, and that I need to be more assertive with my doctors. I don’t want to be on painkillers and lose jobs for the rest of my life!
Sorry for the novel-length comment, but I really am glad to have found your blog. I hope you are doing well. Happy New Year!
XOXO
I hope you are doing better Elizabeth. I’m sorry your comment came in while I was away from the blog (not by choice).
Nice article. I’ve been arguing this for years. Glad to see it in print other than just another of my rants. Another thing to consider with pain and pain management, is testosterone levels. Testosterone is important to males and females. Testosterone is important for opioid receptor binding AND opioids will also further reduce testosterone levels. I became interested in this subject when my boyfriend started testosterone replacement (mainly for bodybuilding but substantiated by low free testosterone levels) After his workout, he was commenting on his energy level being high and that he no longer experienced the chronic shoulder pain he’d experienced since surgery.
Knowing that glucocorticoid steroids are a hormone, I wondered about the relationship between steroid use, pain, and low testosterone. Check this out: http://www.practicalpainmanagement.com/treatments/hormone-therapy/testosterone-replacement-chronic-pain-patients
Interesting article. I’m waiting for my test results. It’s interesting to say the least. I’ve talked with many RA warriors who have either experienced reluctance from their doctors in addressing pain, they’ve been labeled drug seekers, or have developed tolerance to pain meds. Another instance where patients are blamed when treatment is not effective. If there is no receptor sites for opioids to bind it’s kind of like spitting in the ocean. This article suggests that the first step in pain management would be to evaluate testosterone (and other hormone levels).
I love the article on Chronic vs Recurrent Acute Pain.
http://www.practicalpainmanagement.com/treatments/hormone-therapy/testosterone-replacement-chronic-pain-patients
I recently wrote about the differences between neuropathic pain and rheumatoid arthritis pain on my blog site, painsciencenetwork.com. I was unfortunate enough to come down with a case of the Shingles, thanks to being immunesuppressed by Humira I was taking for my RA. I found this to be a very educational experience as I have been studying the science of pain for over 20 years. They are very different types of pains that are associated with very different experiences. They are also processed quite differently by the nervous system and I highlight those differences as well. All pain is not the same, yet sometimes as a patient you feel yourself being categorized into a pain intensity score knowing this is not the same kind of pain. For example, when I called the doctor to get an appointment for what turned out to be a case of the Shingles, in the back of the head, imagine how difficult it was to describe to them on the phone (so you can get the appointment) that I have head pain but it is not a headache. No I did not have an injury, it is not a migraine, it is not a stress-related headache-it is sharp shooting pains. Eventually I just said my Rheumatologist send me to you and that was the magic bullet to get in. If you click on my name you can go to the website and read those posts-I include a discussion on some of the concepts related to the psycholgoical constructs that people are often giving to chronic pain patients including us with RA, and I included a discussion on the science of these different types of pain.
I am attending a pain clinic for the first time. I almost went nuts when I heard the description of chronic pain. Here is a link to a video that is frequently used to describe chronic pain and was used in our orientation session.
Kelly, you’re right. We who suffer from RA do not meet the definition of chronic pain because we are still experiencing ongoing tissue damage. According to this video, chronic pain ONLY occurs when tissue damage is no longer an issue but the brain keeps processing pain signals.
Researchers in pain need to catch up to the realities of RA pathology and how this disease DOES NOT FIT the definition of chronic pain. At the very least, the medical community needs to publish information that states that rheumatoid pain IS due to ongoing pathology.
http://www.painsciencenetwork.com/2014/12/brainman-and-pain/
My sons pain was not being treated by doctors. Long story short he took his own life. (11/21/14)He could no longer take the unrelenting pain. He was 23 years old.
Please check out this abstract regarding the MMPI and RA. I once worked in a clinic that treated chronic pain patients and the MMPI was used to determine how the pain was affecting the patients’ mental health. This is pretty interesting!
http://www.ncbi.nlm.nih.gov/pubmed/3801070
Yes, if you are interested in more, you can put the name Pincus into the search box on this site.
I am so happy I was referred to this site. This is the first article I’ve read so far but all the information makes me want to cry. I’ve been in a deep depression thinking I’m weak or even convincing myself I must be faking it. I am diagnosed from a doctor and on meds. I can’t fake blood tests. But to hear its normal to have sharp pain instead of chronic dull pain makes me feel less alone.