When Eventually Is Now: the Rheumatoid Time Warp
Eventually. Eventually, this could cause trouble.
Did you read many articles when you first started learning about Rheumatoid disease? I remember how it started to bug me that things the disease did suddenly were all supposed to not happen until “eventually.” It must be to be one of those favored misconceptions that the medical media won’t let go of: “eventually.”
We read that eventually Rheumatoid disease will become very painful; or eventually, a person may lose some strength. Eventually, a person might notice changes. Eventually, other joints are affected.
So, eventually Rheumatoid is bad news, but it’s not so bad at first?
- “Eventually joint pain will develop,” MedPedia.
- “Rheumatoid arthritis eventually impairs the life quality of female suffers,” Science Daily.
- “Eventually, the knees, hips, elbows and shoulders will begin to show signs of the disease,” WiseGeek.
- RA “begins in the toes and forefoot as well as the hindfoot before eventually moving into the ankle,” Orlando Orthopaedic Center.
- “Eventually, the person can no longer close their hand to make a fist,” CPR St. Louis.
- “Eventually, bones and joints can be damaged, leading to disability,” University of Maryland Medical Center.
- The “joints of people with rheumatoid arthritis eventually become so damaged they can no longer function properly,” Information Television Network.
- “The disease begins in cycles as symptoms first come and go, but eventually they become constant,” World’s Healthiest Foods.
- “Eventually rheumatoid arthritis can harm joints,” WebMD.
- “About 90% of people with rheumatoid arthritis eventually develop symptoms related to the foot or ankle,” American Orthopedic Foot and Ankle Society.
Eventually is said 7 times on this National Institutes of Health RA page and 4 times in this New York Times RA article.
What if eventually comes a little more “immediately”?
Is all that trouble really being put off until eventually? Not so much. The disease is heterogeneous, but we also know what’s common. It’s common for Rheumatoid disease to begin in many different ways, including articular (joints) and non-articular. Small or large joints, it doesn’t care. Systemic symptoms like fever or fatigue are common. And people tell us damage can be sudden or slow, early or late. But some kind of disability and pain is usually sudden and unexpected – that’s why people go to the doctor. The onset I remember was sudden and severe. And, reading through the RA Onset Stories, it sounds like that’s common.
It’s pretty dangerous for either patients or healthcare professionals to have eventually on their minds when they consider the dangers of Rheumatoid disease that can attack things like the heart and the spine within two years of diagnosis. It’s kind of like saying if there’s a robber in your house, he might eventually take something. Who wants to wait around to find out what?
A lady doctor with Rheumatoid wrote me this week that she sometimes can’t pick up a stack of charts. She’s only had the disease for two years, but she’s had such problems… and so have most patients.
Eventually, the truth will be known and readily available to people who need help. We’ve seen improvements in some literature in the past few years with many sites even echoing what patients here say… people will catch on. Eventually.
Postblog: The word is not all bad! And eventually, there is always something funny
Whenever I Google anything to do with “Rheumatoid arthritis,” I do eventually click on something that leads me home. Like this headline you might recognize “The future will come for predicting Rheumatoid Arthritis – eventually.”
Recommended reading
- Five Things I’ve Learned about Rheumatoid Arthritis in the Neck
- What Is the First Symptom of Rheumatoid Arthritis?
- Excellent Rheumatology Care with a Horrible Rheumatoid Disease
- Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
Well, okay, if it eventually will go to other big joints (and mine sits in my shoulder and hip, thank you,I am also one of those asymetrical as well) then maybe everything else will take its sweet time?
I live with this on a day to day basis. My life is not eventual. It is now. My RA doesn’t attack my small joints much anymore, it just hangs out in my big ones, and causes some right now stiffness and pain.
My life is right now, and the things I want to do is right now, so I will slow down for my RA…eventually.
~Jennifer
Mine started in my big joints, and 20 yrs later started doing a number on my small joints. I guess eventually *everything* gets affected.
There is a big problem with the officials defining & diagnosing the disease and its progression by the standard of “small joints” when it can begin anywhere and progress in any direction – articular or not – as the experience of actual patients tells us.
I would say my onset was “gradual” — meaining over a period of three years, I made compensations for little things I noticed in my hands and feet. Then BOOM! It seemed all of a sudden I had no strength, daily pain, and lost mobility in hands, feet, shoulder, and jaw. I couldn’t ignore it or pretend anymore.
rawarrior this is really smart
The only “eventually” I care about with RA is that eventually we will find a cure.
My “eventual” is becoming more immediate. I am turning 47 tomorrow, have 3 wonderful adult children, three beautiful grandchildren under the age of 8, and I am not ready to be disabled. I wake up each morning and say to myself, “Today, I WIN!” I hope my being positive never stops working.
I will be 47 in January and my story is same…I just got my blood tests back positive and am waiting 30 days to see the rheumatologist that i want – I am just overwhelmed at how fast “eventually’ came…a stressful year maybe accelerated things? but every day i have to learn to walk and open and pick things up all over again…
Eventually, when *they* got around to it, I was diagnosed. Eventually, I would have gotten very depressed, thinking it was all in my head. Eventually, I said “hey, there is something really wrong with me and I want you to find out what is is, NOW!”
well said, Marcia.
Mine was gradual, like Melissa. I would make compensations for pain and exhaustion, writing it off to stress, busy, older, heavier… slowly reducing my activities until I realized that it really was more than stress, busy, older, heavier. Then the fatigue hit and it felt like a lead suit. It then took another year for the doctor to agree to refer me to a rheumatologist. I’m seronegative, with every joint affected except my back, neck and ankles. and do find that my rheumatologist is dismissive of fatigue, and insists that RA “doesn’t really hurt” We really have to be our own advocate!
that’s true and it’s hard to do. you think, if it were do to injury or so many things, a person would have help for this right away… but with RA we somehow are allowed to slide downward unnoticed or suddenly can’t move & nothing is immediately done about it. I think the “eventually” mindset of those who don’t have it does us a disservice. In some countries, rheum disease treatment is now considered urgent – since they know it will bring the best likelihood of treatment response.
Sounds like someone’s rheumatologist needs to try the arthritis empathy suit on (there is one, kind of like the empathy maternity belly).
Very cute article. So true. Looking backwards, I guess my RA did start gradually, I went from needing to “warm up” in the morning to not being able to move or dress myself in less than six months. I thought it was pretty fast!
Thanks again Kelly!
six months to disability is pretty sudden in most people’s calendar! thanks for making me smile Lynne by using the word cute! 🙂
RD came on suddenly and viciously. It waxed and waned as I continued with my career and raising a family, working and playing through the pain.
‘Eventually’ the disease did it’s damage. It hit hard in the beginning and instantly changed my quality of life, but now RD has done it’s damage. For 29 years it was smouldering when it wasn’t flaring. I was an active productive person, even when it hurt. Now I am a shut-in in training. I had to stop working. I had to quit playing golf. Driving may be next. Then walking. Because ‘eventually’ the disease wins. It’s not a matter of your wrist hurting when you pick up your grandchild. It becomes no longer being able to pick up your coffee cup.
I pray for real help to conquer it, one way or another, so that ‘eventually’ people won’t have to live in such pain and disability.
Thank you for your work on behalf of those of us who suffer.
Thank you for sharing this excellent description, Lynda. There is a wide heterogeneity with rheumatoid disease – and it’s so important to describe that.
I hope you will be able to keep driving and walking – we all know that any independence is so important to us. The disease is so relentless and evil. I really feel for you.
I couldn’t pick up a coffee cup *right away* – overnight. Later, I could, but carefully with 2 hands & pain. There is nothing normal about my abilities with any joints even those that don’t look swollen… My whole life changed in one moment as you said “It hit hard in the beginning and instantly changed my quality of life” – that is true often even when the bone damage is gradual. The inflammation of tendons can make it impossible to do many things normally early on.
“Eventually” came quickly for me as well; within weeks of onset, but prior to final diagnosis. “Eventually” came to fruition even before my first rheumy told me that the prognosis was not good, and that my disease activity was very aggressive. Fatigue and malaise had been going on for at least a year, but I had not complained, just kept trudging on, beating myself up for not being the high-achiever I always had been. Within weeks of my first symptom of pain, it had affected both feet and ankles rendering me unable to get out of bed. RA mostly affects my tendons, and you’re right Kelly, tendon involvement makes it impossible to do things right from the start. It really “irks” me when I am told “your hands look pretty good”. It almost seems to me that the medical community waits for “eventually” before they feel the need to do anything. Are we waiting for tendons to snap or shear? Are we waiting for tendons to pull bones out of joint? The only adequate description of the pain associated with tendonitis I have found is “it feels like I am being drawn and quartered or like I have been put on the ‘rack’ “. I hope they eventually do something, because I am not sure how much I can take.
BTW, I recently told my rheumy (who I fired 2 weeks ago) that I should pack up and move to a country that recognizes the importance of appropriate treatment for this devastating disease. My rheumy Laughed Out Loud at that. That was my final clue that he does not take autoimmune disease seriously. Then he agreed to do the prelim for Humira. He failed to check my medical history and the fact that I have a history of histoplasmosis of the retina. I am not surprised. He has been dismissive and insulting for the past 2 years. Going to a new rheum now, waiting for more tests.
Belinda, We must have been going to the same rheumatologist. I’m getting a new one too.
Oh my, yes! Exactly!
I think that the “eventual” serious conditions may be a result of very poor understanding and diagosis in the early stages. I was treated off and on for 25 years with symptoms that seem now to have obviously RA. I had pain that I simply learned to deal with for most of my life. It would get worse for a while then tapper off, untill January 2009. Suddenlly I went from my normal pain level to not being able to lift my legs without intense pain. It was this sudden deterioration of my condition that cause me to be refered to a Rhuematologist. I had never even heard of that type of doctor before. I think the primary care, and even the orthopedic specialist that I had been going to are not at an acceptable level of understanding and looking out for RA. Once my condition was diagnosed, I was run through all the “normal” treatments, and found a combination of meds that have given me a better life than I had before I “knew” that I was sick. Part of the delay my well have been my own fault in that I got bad so gradually that I did not realize how bad I was getting, untill,”eventually” all of a sudden I could not move.
Matt
This is another accurate observation, Kelly. If only it was that thing that happens as we get older, where time passes so much more quickly & a year goes in no time. But sadly not.
For me, the eventualities related to the disease process came within a few months, as you and others point out.
But there is an area where ‘eventually’ is accurate – when it comes to medication: eventually a drug is found to work or fail; eventually the new drug is approved… I’ve been shocked by how long it takes to find a regime which does any good.
Hello all
I am new at this site.
About 3 years ago I thought that I was having a heart attack.It was A-FIB.I was put on heart med,s.
Tired every day.Then our Son Passed away,lot of stress.
I was on vacation in march of this year and went to the back forty to cut a load of wood.
The next dayI could not get out of bed.The pain was terrible.To make a long story short it took 6 months before the doctors found I had r.a.
I take Humira and vicodon for the pain.
I was off work for over 6 months,I was fired Oct.
I used to hunt and fish and cut wood.
now it is hard just to drive my car to therheumy.
Thank You
Bob
Eventually they will take this disease seriously like MS and Lupus.
yes! I agree. We will bring this about when it’s called a disease instead of being mistakenly referred to as “a type of arthritis.” No one says “Lupus arthritis” even though that disease includes joint inflammation (the literal translation of arthritis).
This is the first belly-laugh I have had in months.
■RA “begins in the toes and forefoot as well as the hindfoot before eventually moving into the ankle,” Orlando Orthopaedic Center
Dunno about y’all, but I don’t HAVE a hind foot and a forefoot. I just have feet. Is this perhaps why my Rheumy treats me like a dog?
lol lol Thanks Phyllis! My Word program didn’t like some of those either by the way & I just pasted them as is! How about a “female suffers” instead of sufferers?
Either way Kelly- it is accurate enough I suppose.LOL
I think that maybe we accept large joint initially as ” normal” aches and pains- at least they become normal for us. It is when the smaller joints in the hands/feet feel horrible that I then went to a Doc. There some 200 plus bones in those forefeet and hindfeet of mine- and they ALL seem to give me fits! My forepaws too for that matter.
gentle hugs to all-
I am new to this, in fact I go to my Rheumatologist in 2 weeks (the earliest appointment I could get). But started last week noticing swelling in my jaws and it did not dawn on me until yesterday to think about my jaw joints. My experience has been very quickly to large joints and very little with my small joints which is where it started only four months ago–it has taken me this long to convince my PCP to refer me to the RA doctor.
Great jab at the humor of those who haven’t walked in our shoes yet.
Carol
wishing you the best in your care and treatment, Carol! The jaw can be a real pain.
We do have that post linked in this article, with well over 500 comments telling the first place the rheum dz struck & hands is not the most popular answer I think. We have made it into a chart & they really need to realize this an error in their assumptions.
I always thought my foot problem wsa from my osteo. Yes, I am blessed with both RA and osteo. This was very helpful. Keep up your wonderful writing on RA! Thanks.
Most Rheumatoid patients have OA too. It comes with it unfortunately for most people, like osteoporosis and Sjogren’s syndrome. If it’s inflammatory and symmetrical, it’s probably the rheumatoid
My onset was extremely sudden. I woke up one morning a perfectly healthy 20 year old woman. I went to work and around the time I was finishing my morning coffee I felt a twinge of pain in my hip. I didn’t think much of it until the pain got exponentially worse. By the end of my 6 hour shift I couldn’t walk or bend over. I was sweating because I was in so much pain and I made somehow made it to a walk-in-clinic where I almost fainted in their office from the intense pain. The pain has not been that bad since that day, or maybe I’ve just gotten used to it. The month afterwards pain and stiffness spread to my other joints and I was diagnosed with seropositive RA.
I’ve been diagnosed with RA for 3 years however I can track symptoms back 7 or 8 years. So far nothing except Prednisone offers relief. I dislike taking Prednisone because of the long term side effects and the short term problems with weight and moodiness. No fun.
Been the route of DMARD’s and I’m working my way through the
list of Biologics.
Embrel
Humira
Orencia
Actemra
The next one up is Rituxan.
Any suggestions as it’s getting pretty distressing.
Walking is quite difficult (ankles, feet) on some days as well as lifting anything as the hands and wrists are quite swollen and painful.
I am new to this site ,I have been diagnosed with sjogrens for a few years now, and just recently have been diagnosed with RA. I really enjoy your website and have learned a great deal about Ra.
thank you
Bonnie
Welcome Bonnie! Let me know if I can help you find something. I hope you’re doing ok.
Just reading all the posts and realize that most of us have the same beginning (fatigue, vague pain, stiffness) but keep on going.
The same with me, working as a Nurse, I suddenly started having stiff fingers, and that interfered with my work right away. Within 1 week, I could barely walk, had to go on leave, then after meds (prednisone) stared slowly to work again part time. Now 20 years later, I am on disability, my hands and feet are going the “sideway” look giveaway….
I also have OA in my left knee and waiting for a total knee replacement. I am not taking any biologic now, but I will start after surgery as I now practically live on Vicodin 🙁
Thank you for this website, I am not computer friendly, so I might get lost on the site, but I wish everyone of you many pain free days….
Nicole in California
Rebecca,
I’m trying to post this for the second time, so if you get it twice, sorry.
I live in a different part of the country from you, but my RA doc belongs to a group of physicians that have formed their own financial help group. They provide lower to no cost to those that qualify. I thought maybe you could check with your doc. to see if they are involved with something like that where you are.
Also, I know that some pharma. companies will cover the cost of their medication if you qualify. Maybe you can check into that too.
I understand, because while I have insurance, they don’t want to cover some of the medications that my dr. wants to prescribe. I hope this helps.
Cathy
Spokane, WA
Maybe there is another definition of eventually, I went from shoulder pain in August to barely able to use my hands by the following May. I found a great rheumy, and am now on MTX, tapering off Pred, i can’t start on a biologic yet, my Doc wants to make sure I don’t also have MS, EVENTUALLY, I will get the money to get more tests, currently no insurance, or job. Thanks everyone for sharing, this site is great.
Who wants to wait for eventually when we need the docs on our side now. Sigh.
Yes, eventually has come upon me much too soon!
I appreciate so much that there are those out there that I can relate with. Not that I would wish this on anyone!!!
While I was at my Reumetologist just this Wed., she gave me information on a company called Crescendo. They are talking about a new diagnostic test called Vectra DA. This is the link http://www.crescendobio.com/crescendo-biosciences-vectra-da-test-indicates-remission-in-rheumatoid-arthritis-patients/
I would love to hear any feedback on this.
Cathy – mycatsmeow1@gmail.com