The Hypochondria of RA Pain: Do I Smell an Elephant?
Hypochondria is an elephant in the room with RA pain
The elephant house was always my favorite place at the zoo. We always knew when we were near it …by the smell.
So, how can an elephant creep into a room? They don’t exactly tip-toe. Maybe what happens is that nice people don’t discuss certain things, so no one asks, “What’s that smell?” It’s awkward to talk about certain things so we sweep them under the rug. Unless our shoulders hurt too much to hold a broom.
Hypochondria and exaggeration of RA pain, my eye
Yesterday, Jakki commented on RA pain in the Twilight Zone about her general doctor’s comment on her RA: “Oh so we’re in the chronic pain syndrome again are we… Well we all know about that! So does that mean he doesn’t believe me when I say it hurts or does he think it’s all in my head? … Not much physical damage to the joints and my blood counts are ‘normal’ I feel great about that! But why does it still hurt?? As I type this my chest feels like it’s having a knife twisted in there …I know I should have it checked out, but I don’t want them to tell me it’s all in my mind again. We know it isn’t ‘cause we have to live with it! No wonder we don’t want to go see these people.”
I read these comments from patients every day. I want to say the H word (hypochondria) out loud and expose the absurd notion that the pain of RA patients is…
- Poor pain processing
- Psychological abnormality
We’ve talked about RA pain several times over the last year and I’ve read hundreds of comments. Most people who live with severe RA pain are the reverse of this list. What I’ve learned is that RA patients tend to understate their pain and manage it stoically. A large study about RA pain presented at ACR confirmed exactly that.
RA pain is the opposite of hypochondria
We’re all different, but why do most of us try to hide how much it actually hurts? As for me, I recall the shame of crying so much during the 29 hour labor with my firstborn. And so I always bear in mind the virtual silence of the four subsequent births. I refused to suffer that humiliation again. It became part of who I am like a PTSD. Maybe that’s what happens with RA pain for some of us. Maybe that’s why our new slogan “Hug gently. RA hurts.” is more popular than our other RA awareness t-shirts.
Three things I’d like to see change about RA pain
- Have RA pain treated more satisfactorily
- End the insinuations that RA pain is hypochondriasis
- Have researchers consider the implications of RA joint pain on disease activity
Will my email victory turn out to be a stupid failure?
This month the partnership to which my rheum doc belongs moved into the new century with patient email. Instantly, the email system provided patients like me a more precise and rapid method to communicate with doctors. I sent a note to the rheum doc as a follow-up to our recent conversation about nuclear bone scans. Two days later, the MA called to ask which hospital I wanted to use for the scan. It was truly stunning how efficiently the new email program worked compared to struggling on the phone with the MA.
Will I be sorry I got what I wanted? Maybe. The doc is worried for my sake that the test results will be negative, saying that they don’t confirm disease activity at least half of the time. I’m hoping this won’t be the “H scan.”
If only I could have gone for the test today. My RA fever was a little fiercer. About 20 joints seem to think that they are in labor. My shoulders act like they are nostalgic for the beginning of this flare five years ago. My arms are both frozen by my side. It really hurts. For labor, I didn’t even have Tylenol or Advil. Today, I have access to much more of course, but it’s helping very little.
- Some Rheumatologists Don’t Understand How Much It Hurts
- Rheumatoid Arthritis Pain in the Twilight Zone
- Does Rheumatoid Arthritis Pain Really Hurt That Much?
Edit 10/12/14: replaced video link after YouTube removed previous version
Edit 8/5/16: replaced video after owner deleted previous version
31 thoughts on “The Hypochondria of RA Pain: Do I Smell an Elephant?”
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WOW! This hit home with me!!! The good old “exaggeration” word that is…
Last fall my knee hurt out of the blue – woke up one morning – couldn’t bear weight on it. Ended up seeing ortho….he (roughly mind you) puts me through range of motion, I just about come off the table. Oh he says, that “exaggeration” of pain shows that it could be…(I forgot what he said after that because all I heard was exaggeration!!! I couldn’t believe it!!
Ends up I need an arthroscopy due to a torn meniscus. But he told my husband and I that this was NOT related to my RA…hmmm, meanwhile BOTH knees become warm red and swollen from time to time…!?
My rheumy also says “you don’t treat RA with with pain meds.” Hmmmm, thankfully, my hand ortho surgeon gives them to me!
I also minimize my pain, I KNOW I do…my personal motto “suck it up and deal with it”. I’ve been doing that for 4 years since diagnosis taking Motrin 800 for pain as needed, with an occasional tylenol with codeine from the hand ortho. Because I don’t get a lot of them, I use one pill about once a week! Could I use more? Sure. I tried to get into a pain clinic locally (right down the street from my house) – response? “We don’t treat those conditions.” (I have FM also)
So I’m stuck! Oh well, I will persevere and get through this with a smile on my face as usual…God bless you Kelly!
I’ve encountered those issues too Marie. And as a provider yourself, I don’t need to tell you that there is great variety of care providers’ attitudes, abilities, and approaches. I know you’re an empowered patient and you’ll get what you need as you work through your own network, but I thank you for taking part in the conversation here as we work toward better solutions for all!! 🙂
Kelly, I feel so blessed for my rheum being considerate! He touches me very gently, and never ever questionned my level of pain (as stated be me) – everytime I asked for more potent medecine, he prescribed it right away, even tough my RF is negative, and blood work shows little (slightly raised sed rate only).
I wonder if this could be part of this relatively new attitude of mine, stating calmly my needs and truly expecting them to be understood and filled. From a psychological standpoint, I feel very confident that my life is perfect now, as it should be, and that my pain (terrible as it is) serves a purpose, even if I do not understand it. This is very personal of course, and I do not imply in any way that if someone experiences life otherwise, it is their fault/they haven’t understand/their attitude is wrong/they should drink more carrot juice! Simply, through this ordeal, I feel I have grown to be a better person.
Expect the best, you all deserve it!
My current rheum doc has never disparaged my pain & I hope I did not imply that my care is less than excellent. However, I hear this from patients every day, including parents of JRA. And I’ve experienced it from other doctors and nurses many times. And most significantly, I’m concerned about the researchers who believe mistakenly that RA pain is not as severe as the patients say it is. Please not the links in this post and below since I’ve written about it a few times here. I just want patients to receive the care and treatment that they should.
I don’t recall being called a hypochondriac; but walking away feeling like one is really no different. After having numerous rounds of blood tests and being put on different medications with no results, I simply stopped seeing my rheumatologist. My husband’s insurance mandated that I travel 1 1/2 hours away to see a rheumatologist in the network; this is due to us moving to NC from OH. OH is actually where I started seeing a rheumatologist. He told me that I only had mild arthritis and sent me to a neurologist. So this has been on going for well over a year.
The neurologist did an EMG and told me I had a pinched nerve in each elbow and one in my neck. That is fine; but why the all over body pain? No one seems to be able to answer that question. The rheumatologist here in NC said I have “fibromyalgia-like” symptoms. Really? Sometimes I hurt so bad I cannot stand to be touched. It is difficult to stand up or sit down. I do feel some better when I am moving; but that only offers slight relief.
One more piece of information I almost forgot. My daughter has many of the same symptoms as me. She is currently seeing a pediatric rheumatologist at Duke. We learned at her initial visit that she tested positive for HLA-B27 genetic marker. They told us that she has enthesitis related arthritis which is affecting her back, hips, knees and ankles. Emily having the HLA-B27 genetic marker means that her dad or I one have it. Is this something I should investigate further?
Should I return to this rheumatologist? Perhaps I should see if there is another in my insurance network. The travel will still be long; but if someone can help me, it would be worth it. What would you suggest? Does this sound like RA to you?
I’ve bombarded you, I know; but I need answers. I don’t expect you to be able to diagnose me. Could you just give me a little insight? I would appreciate it. So glad I found this site!
I do hope you can get another opinion or get back to a rheumatologist that you can trust. Even if we have to drive more or pay more, it can be worth it to get good treatment. Of course like you said, we can’t diagnose each other especially when we can’t even see each other, but the genetic evidence points to an autoimmune arthritis disease. You can read through the RA stories (on the menu) and the Do I Have RA? Page to get some ideas too. I hope you find an answer soon so you can be treated!
Guess I’ve been lucky on this front – sure I’ve had pain dismissed as ‘part of life with RA’ by a GP, but my rheumy has gone all out to help me manage the pain: testing pain meds, sending me to a pain clinic (best thing I ever did!) and tips for how to ease the pain. Small mercies eh?
Yesterday I saw my internist. He is so in tune with chronic pain it isn’t even funny. I’ve been working on the same bottle of 100 Lortab caplets for 3 years, hoarding them carefully, only taking one about 1-2 times a week at night so I could get to sleep. My internist stated that I absolutely did not have adequate pain control! He said if it hurts when my husband, children, grandchildren or friends hug me, gently, then my pain control is inadequate. What a guy! He isn’t worried that I am a drug seeker. Rather, he knows I avoid taking pain meds to my detriment. So he is having me try a new weekly patch of a mild analgesic called buprenorphine. I told him I would be willing to try it, but if it makes me “fuzzy” in the least I’d pull it off and toss it out. So I’m taking that Rx in for filling today. Oh, yeah, he gave me another Rx for a large bottle of Lortab. And I’ll hoard it just like I did before. Like you, I have a horror of expressing pain in front of people. I’ll go to our room, lie down and cry or moan into my pillow for a while before I’ll let my family see that I’m in pain. Now why is that, I wonder? They all know, accept and believe that I am in pain – constant, chronic pain, both from my RA and from the fibromyalgia. Yet I don’t want to let them see just how much pain there is. And, like you, I hear on the fora and lists to which I belong that people just don’t let on how much pain they have! “H” word, indeed! If anything, we are the opposite of that. I’m just so glad my internist is so understanding. I wish that for all of you!
Elizabeth, there is something wrong when a nurse with a PhD has to hoard one bottle of Lortab and cry alone into a pillow. That’s exactly what I wrote that I hope can be changed.
I’m the same way about refusing to be “fuzzy” at all so let us know how the patch does for you.
I think that people like us have a great deal more pain tolerance than the general population. We raise children,have careers, and do things even when are joints are inflamed and in pain. The majority of RA patients I have known both personally and professionally all seem to have great pain tolerance. Is it because of being in pain for so long that our pain receptors are different or is it because we are so sick and tired of complaining that we don’t want to be viewed as a hypochondriac?Because lets be honest I’m sure we have all heard more than not that we don’t look sick. As for physicians I have had some very good rheums when it came to pain control. They were the ones who suffered from an autoimmune desease themselves. The others like my present one dole out the pain meds like I’m an addict looking for my next fix. I get one a day or 30 per month. I tend to hoard the meds like a few of the above responses because I don’t know when I’ll need them more than the once a day limit. Also when I mention to my rheum about maybe a stronger pain med or more than 30 she brings up a pain clinic. I don’t feel I need a pain clinic I don’t feel I have the kind of pain that she as a rheumatologist can’t control. So we go along miserable, uncomfortable, and being so very misunderstood.Hopefully it will change and maybe we’ll find the special doc who really understands this condition and gives his pt. the care and understanding they really need without looking cross eyed at the request for more or different pain control.All I can say is if you do not feel your physician is addressing all of your needs look for another one they are out there.
thank you for the excellent comments and “advice.”
My rheumy is really good about understanding that RA really really hurts. I do have friends and family that don’t understand why I’m not “over” this yet. I’m bad about not showing or telling about the pain. The other day I did tell my husband that even the pressure of my socks were hurting my feet. He was astounded.
Kelly, thanks for bringing up this topic. I’ve shared my frustrations with the carelessness of even close loved ones who hand me brooms or dishes, or ask me to help carry packages from the car with the “it’s light, you’ll be OK”. Clearly, they don’t believe the pain is real — and I’ve also shared that it’s been implied by people close to me that my disease and pain are self-inflicted, perhaps due to “cheating” on my diet by sneaking a cup of coffee, or a slice of wheat bread. So, the last 9 months whileI was eating caffeine-free, gluten-free, sugar-free, I was in flare up and extraordinary pain. One week after I blew up to my significant other, called the “diet cure” out for the BS that it is, my flare immediately receded as my source of stress was CRUSHED by my insistence that I would not believe them anymore regarding diet or their inferences that I brought this on myself through lack of discipline and am exaggerating the levels of pain and disability. Not a week after this incident, I was able to walk for the first time in a year without a cane and without pain. I can use my hands, move my arms. My pain has dimished, the flare up of the past year completely gone…coincidence? Or, is this release of STRESS from expectations of those around us really responsible…I believe in my heart that this is the case.
All this makes me think that the STRESS put on us by those closest to us and by ignorant health care providers also plays a role in whether we feel good or not. On that note, I encourage anyone who is told they can manage this disease SOLELY with diet to feel free to contact me. I did everything I was told but saw no relief until I received pharmacological treatment MTX/Preds for now — and I only regret that I did not do so sooner or I would not have lost the past year to severe pain and disability.
Judy! I’m so glad that you are feeling a bit better and thank you for sharing that great story here. I do know several people who have tried to treat RA by nutrition unsuccessfully. It makes no sense with the science of what RA does. I have also tried to treat thyroid (autoimmune) that way & it won’t work either.
And, oh my, I hate the “No, it’s not heavy” thing. Like I’m lying?
Kelly thanks for all you’re doing to help people with RA. I’m very fortunate to have a wonderful doctor and she really does believe my pain. But like everyone on this blog I suck it up because I don’t want to appear “lame” to people around me. And I don’t like taking meds that make me feel “fuzzy” either. Going to a room to scream after a handshake seems to be my normal response – grin and bear it. With no obvious signs like bleeding or injury it’s hard for people, who don’t have this problem, to understand.
Well put, Elizabeth. It’s hard to believe.
I feel pretty fortunate to have doctors that believe me about my pain and have worked with me to find adequate methods of pain management.
In my career I’ve had the opportunity to work on a few projects looking for new pain treatments. I’m not an expert on the subject by any means, but I can tell you that pain is a very complex and there are many different types with many different causes. Pain can be caused by a stimulus or physical injury, pain can be caused by damage or compression of nerves and pain can be mental.
Thinking back to my own medical treatment, I can’t recall ever being offered better pain management options for my RA or other painful conditions I’ve had in the past. I’ve always had to ask. Though I’ve never asked for specific medicines or strengths or quantities. I’ve always left those decisions up to the doctor and we iterated until we found adequate solutions.
The best advice I could offer is to be persistent, professional and polite. If you get rebuffed or told that it is in your head that doesn’t mean that what you’re feeling isn’t real. If the pain is a problem for you and your doc doesn’t want to deal with it, then ask them what you should do, who else should you see. You have options. People shouldn’t have to live a life of agony with needless suffering.
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I feel very fortunate to have a Great PCP who totally believes how bad RA feels and the complications it causes….His own mother suffers from RA and he has learned about it through her so this helps him take really good care of me…Between the medications he offers me and the ones my Rheumy offers I feel that I have adequate pain control most of the time…Sometimes I feel like my PCP takes better care of me and is more understanding than my rheumatologist! I think that comes from his personal experience with the disease…
same here. What would I do w/out my good GP?
Thank you, Kelly,for taking on these issues that are common to all of us RAers, but not often talked about due to anything from embarrassment to concern we will be seen as ‘crazy’. I have had medical problems all my life. A lot of my illnesses have been odd – in the Stanford hospital at 2 with an all over body rash that was finally determined to be either an unidentified virus or an allergic reaction, other rashes that when I see the doctor I am asked if they can bring in the other providers to see. I have a very difficult time switching doctors as they never believe me until they see my body do something that is out of the norm.
Thank you for bringing us together and being the warrior!!!
By the way – my husband has Finally stopped using the H word now that I am pretty much completely disabled… I wish it didn’t take that much for non-raers to understand.
Sorry to hear you are having such a rough time these days, here’s hoping for some better days!
I found this discussion very interesting. I wrestle with the question as to how much pain is “normal” for RA? Does that mean a lot of pain, some pain, or very little pain. To be more specific, when you first begin treatment, you are given information to read about the various medications and what each one reports they are able to give you. I believe Embrel’s add claims to allow you to live the life you want to lead. Didn’t work for me and I still have not found that magic combination that brings the “energy to do normal activities and reduces pain and inflammation in the joints” that the medicines promised, I wonder is no pain, a little pain, same pain possible for an RA sufferer? who determines how much pain is a little? What is the appropriate treatment?
In addition to a rheumy who understands and appropriate pain meds there are things we can do to help ourselves. I had the opportunity to be in an amazing clinical trial for non-medication based pain management for rheumatoid arthritis. The study was being run jointly by Wayne State University in Detroit and Duke in NC. For 8 weeks I had one on one sessions with a health psychologist who taught me to use meditation, guided relaxation exercises, and to pace myself. (Laugh all you want but I use a kitchen timer when doing housework to ensure I take a sitting break at least 15 minutes out of every hour.) I still hurt, he and I believe that the pain is NOT in my head, and some days are better than others but overall life has improved wonderfully. In my case 30 minutes a day of focused relaxation exercises actually changed my CRP and swollen joint counts without more meds.
OTHER THINGS TO CHECK IF THE MEDS AREN’T WORKING FOR YOU
I’ve seen some bits lately about other disorders mimicking RA and some of the other rheumatic diseases. Hemochromatosis is one – it is an iron deposition disorder. Apparently the calcium metabolism disorders of hypo- and hyper-PARAthyroidism can also mimick. I wasn’t sure if you had a post somewhere of the “mimickers” so I thought I’d post this here.
Rheumatol Int. 2011 Feb 9. [Epub ahead of print]
Calcium metabolism disorders simulating rheumatologic diseases.
Bilge SY, Korkmaz C.
Division of Rheumatology, Department of Internal Medicine, Eskişehir Osmangazi Üniversitesi, Tıp Fak, İç Hastalıkları, Romatoloji Bölümü, 26480, Eskişehir, Turkey.
Hypoparathyroidism and hyperparathyroidism may lead to spondylarthropathy or spondylarthropathy-like problems and crystal arthropathy, respectively. In this report, we present 2 cases with hypoparathyroidism and 1 case with hyperparathyroidism who developed spondylarthropathy-like disease, rheumatoid arthritis-like disease, and chondrocalcinosis, respectively. We briefly discussed relationship between calcium metabolism disorders and rheumatologic manifestations. As rheumatologists, we should be always open to other diagnosis if the treatment does not work in patients with rheumatologic diseases.
No one in my family has had RA that I’m aware of. Some bad OA, and early onset OA. Bad hips, and bad shoulders. I do have an aunt who has mentioned that she’s got “calcium deposits” in her lower spine and feet. I’ve always wondered if it is chondrocalcinosis. Then again, I have an aunt on the other side with “celiac sprue” and Hashimoto’s. I guess I’m a product of both somehow even if I don’t have those things that I’m aware of except the bad shoulders and some early onset OA, except in the hands which are all RA. My meds help some, and I would doubt frank hypo- or hyper-PARAthyroidism – but perhaps there are secondary hypo- or hyper-PARAthyroidism disorders that one may “slip in and out of” from time to time that may affect response to rheumatological meds too.
We all await with baited breath, the result of your bone scan that you are posting about elsewhere. I wonder if and how they can differentiated between the various rheumatological diseases on bone scan, such as say between RA or “inflammatory OA” in joints that could be affected by both.
There are potentially lots of reasons why our pain may be “out of proportion”. Perhaps many docs are not willing to look more closely for those answers. And it would cost us and the system a lot to do so. But it’s not a reason to admit “I don’t know” and just label us a hypochondriacs.
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I am now (drug addict) not due to not having ra blood test positive, I have lost all respect for our medical community, whose helpers have obnoxious opins which they are allowed to voice. I fell in August broke left arm in 3 places 2 places healed, have 3rd cast on arm and struggling to keep type 1 diabetes under control, diagnosed at fifty?
I had the chance once to defend an elderly lady entering a building as I was leaving. Her Son (I assume) was complaining semi-empathetically like he sort of believed her at least but was mystified. “When she gets up after being still a long time, she just can’t get going. I just don’t understand it.” I assured him it is a very, very real phenomenon and not at all in her head or just her being old and slow. We gotta stick together. So far my rheumy’s have been good, but other people don’t always believe me.
yes we do – gotta stick together.
Catherine, I clicked through because I didn’t reconize the IP address – I LOVE your blog. What a great idea with beautiful execution. congrats.
I understand your pain and the condescending attitude of doctors too well. Please get tested for gluten intolerance and try going gluten free. It’s helping me more than the medications. Take care
I understand greatly on the, “This isnt heavy”, comment from my kids and my husband. It seems as I am getting older everything seems to be getting heavier,, and im only 36. Even my Carafe coffee pot. Lifting it to fill the water in my coffee pot seems heavy to lift. No one seems to understand that my muscles are just no longer working the way they used to, the way my mind wants them to work. My husband seems to think its from lack of exercising. That cardio would help. This ive tried, it just makes my body hurt more…the fatique crush me more. Its frustrating and upsetting to say the least. A 16 pound Turkey this year felt like I was carrying a ton of bricks in my arms as I slowly walked it into the house, down the stairs and into my fridge freezer. A 10 pound bag of flour feels heavy as well!