If the Gloves Come Off, We Might See the Irony of Rheumatoid Disease
What if the gloves never come off and no one ever knows. Then you end up with a serious disease that everyone thinks is no big deal; it’s just arthritis.
But who wants to take them off? I sure don’t.
Professional patient days
Today was one of those professional patient days – when you have to spend time getting medical care specifically because you have a chronic illness. It’s much different from acute care, but I’ve never talked about why. By the time I got home today, I wanted to crawl under the covers and hide. I actually did for about five minutes until Katie Beth brought me a cup of coffee.
I don’t think I could ever really explain it to you. In a way it’s like “the gloves need to come off.” If I wrote about how some days are with this disease or the ways people react to it, those not “blessed with Rheumatoid disease,” as some patients say, would likely be upset. But they are the ones who need to hear this story. The gloves should come off now and then, or they will never hear the truth.
Hour after hour and irrational knees
When I got out of bed, my knees didn’t straighten. And, it used to take an hour of sitting with them bent to hurt this bad. Looking like a person twice my age, I dragged myself to the bathroom to wash up and get dressed for an appointment with Dr. Good GP. One reason doc is good is appreciation for keeping patients (me) as well as possible. And that was the reason for this appointment. I wanted to get some preventive care before I start another treatment for the Rheumatoid, and doc agreed: a new TB test, some vaccinations, and some blood work.
I waited over an hour, but that happens often and the patients don’t seem to mind because the staff are caring. I always waited 90 minutes to see Dr. KBC, my first rheumatologist, but that was different because the appointment was spent talking about the doc’s family, problems, or philosophies… This morning we sat in an outer hallway since the waiting room was crowded. Sitting on low park benches, Katie Beth worked on her laptop and I answered comments on the iPad.
When the nurse called me back, I got up from the low seat expecting to follow behind her. But my knees only straightened halfway. None of my joints ever move normally anymore, but sometimes it’s bad enough to surprise even me. I heard myself apologizing as KB picked up some of my stuff. I could feel eyes staring on the way through the office but I was more worried about not falling.
The nurse did a long interview to update background stuff. Doc loves EHRs and is fully computerized. No, I never smoked. Healthy family history. How much do you exercise? I would love to…
Finally, the doc. “Are you doing better?” (When I am any better, the whole world will hear from me quickly.)
“No, I’m the same. Gets a little worse slowly over time.”
Doc looks at KB, “Does she get worse?” KB has no idea what to say. Watching her squirm, I suddenly realize I’ve trained her in the same stoicism and minimizing that I do. The gloves never come off. For years, she’s watched me be able to do less every month than the month before and I’ve watched it break her heart. But she can’t think of a thing to say.
I alternate the gentle hold on my wrists and my fingers because they hurt. I gaze down at my slightly crooked, but unswollen toes. I can’t move any joint in my body normally, but I have no way to show that to the doc. Doc looks puzzled. “How well can you sleep?” I sleep very well. “But are you energetic…?” doc laughs. My fever is climbing, but I don’t mention it.
Previous times I’ve tried to explain the Rheumatoid symptoms. But not this time. Head cocked to one side, doc looks puzzled. I can see the doc that I’ve known for years struggle to decide whether there can possibly be anything wrong with the joints of a woman who just looks tired, not swollen this morning. A struggle because doc knows me as a smart, sensible, together woman – who doesn’t always look sick. But says she is. There’s more, but I can’t quite get the gloves all the way off.
I love this doc for helping me when I needed it. For never saying out loud the doubts I know are there.
But I want to be believed and understood. There is bursitis, tendonitis, and synovitis all over my body. And just the words “all over my body” sound irrational. But, it’s the disease that’s irrational.
Doc looks away as I struggle to stand and go down the hall for my shot. The knees straighten partially.
Every movement I make is difficult because of stiffness, weakness, or limited range of motion. Just because I don’t cry out doesn’t mean I’m not in pain. Could you cry out all day long? If the pain never leaves, you have to learn to tolerate it, and that’s what we do.
I hardly ever say a thing about symptoms that are always there. Because I know they sound ridiculous. Can anyone else see the irony in people thinking we exaggerate symptoms that are so much worse than we say?
I’d like to hear from some caregivers that have dealt with trying to understand us when have to hide so much of it to try to not sound crazy.
I left the office with caring people who just can’t comprehend what this disease is like to go to the lab at the hospital where they don’t seem to care about making so many errors in just our few visits. They lost my son’s anti-CCP test, disposed of my urine sample because they misspelled my name on it (delaying antibiotics for a serious infection), and failed to perform or read my bone scan properly. But that’s not why we dislike the lab there. We dislike the lab because even though I’m nice, they’re rude and physically rough.
But there are few options for labs and this is next door to the doc. Let’s get these fasting labs over because it’s 11 o’clock and we’re starving.
The highchair. “Can you sit all the way back?” No, I’m sorry. I know that irritates them, but there is no way to do it and my blood can be taken from my huge healthy veins even if I don’t try to force my hips and knees back in the high chair.
Down comes the bar across the front, forcing my shoulder up. “Can’t you straighten this elbow more? Lift this shoulder higher.” Smiling quietly, I take deep breaths. The tourniquet tight above the shot… but that’s okay it will be over quickly.
“I don’t feel so good,” the room got dark. I’ve only fainted once and it was giving blood.
“That’s why we tell you to sit back in the chair!”
KB says she’s worried and loudly requested someone bring juice. I hadn’t noticed there were so many vials.
In a couple minutes, I’m walking with bent knees to a dirty bathroom for a urine sample. Using pieces of paper towel, I touch nothing. But still wash my hands at the employee sink – there is not one in the bathroom.
We are overcomers
My knees have calmed down tonight – as long as I’m lying down. My ankle and my toes are nagging. My neck and shoulders are loudly crunching every few seconds. I have to stop and rest my fingers every few minutes because they ache. My elbows just plain hurt. My eyes are burning-itching-stinging all the time. There’s been an unexplained rash on my leg for a year. Sometimes my heart beats hard and my blood pressure soars.
We live with many symptoms that for most people with Rheumatoid disease, never leave completely. But we rise above it all day long and talk about other things most of the time. We’re not over-focusing on the disease; it’s focused all its effort on destroying us. We’re constantly overcoming it.
The doc just doesn’t know.
I wish everyone, including my doctor understood more, but most GP’s don’t know much about Rheumatoid disease. I tell my kids all the time: You don’t understand. And thank God you don’t. I don’t really need anyone to know how bad it is – just to believe me if I say so. As I’ve said before, I’ve lived on both sides of this fence, so I know.
Tomorrow is another professional patient day. After I pick up my labs, I’m headed to talk to Dr. Tylenol, who I didn’t plan to see again. It’s sadder when it’s a rheumatologist who doesn’t understand, but I’ll smile and get through it.
Postblog: This is the longest post I’ve ever written and I hope some of you made it all the way to the end. It seemed like a good way to try to capture for you a few hours of being in my place.
Edit 9:02: Tiny edit to juice sentence because KB reminds me that she repeatedly demanded juice. I was unsure since was losing consciousness at the lab and she was asleep last night when I wrote the blog.
- Rheumatoid Arthritis Awareness Is about Medical Care, Not Sympathy
- What’s the Big Deal about Rheumatoid Disease?
- Rheumatoid Arthritis Awareness: Sugar Coat Cookies Please, Not a Disease
98 thoughts on “If the Gloves Come Off, We Might See the Irony of Rheumatoid Disease”
(((Kelly))) I’m an RN, my mother had RA for 60 years, and I still didn’t know how awful this disease is until I had it, too. The part about being stoic struck a chord with me. My kids didn’t know for years that I had crohns. I saw the pulmonologist a couple of days ago for the ILD I probably wouldn’t have if the doctors had taken my complaints of joint pain more seriously years ago. I’m not a complainer. I drove myself to the ER with a perforated colon (for which I had emergency surgery) because I didn’t want to bother my husband and kids, and one of the first things the ER doctor said to me was that he wasn’t going to give me anything for pain because I drove myself (so I obviously wasn’t in that much pain). I minimized my joint pain with my family until I couldn’t get out of bed. I’m so sad for the way you are treated…for the way we are all treated.
I’m sad for how so many are treated as well. I often wish the whole world would read just the comments here to see the truth.
Thank you for empathizing with me.
And yes, most of us are not heavy complainers at all – it’s something I’ve identified as a common trait with this disease. I drove myself to the ER twice too – once for emergency surgery and once with a large 2nd degree burn after 24 hrs w/out burn care. It’s nuts to think we “seek” medical “attention” etc.
Hi Kelly Young. I perused the website and am sort of interested in being a part of the community. I have had RA since I was 28. I am 47 currently. I have had 7 surgeries (thumb tendon repair/replacement 2x’s same thumb, 2 fingers middle joint replaced – waste of surgery they are floppy like silly puddy at the joint now, lung surgery for multiple plueral effusions – had it drained 3 times too before the big surgery, while on Remicaid I got a mysterious infection in the tip of my thumb and ended up with necrotizing fascitis -hospitalized 5 days on IV antibiotics and then thumb surgery to debride the dead tissue, full knee replacent x2 L and R). Currently, I am only on Mobic, folic acid, anti-depressant and flax seed oil- and 1/2 a vicodin or percoset if needed at night or when I have exteme pain. This is by choice.
I am unemployed again – the last time was after my $50,000.00 lung surgery the school district where I taught ‘let me go’ for no reason. I have my Master’s and would love to teach as currently that may be the only thing I can do – my feet, elbows, wrists and fingers are still bad. Lifting or doing anything with my arms is pretty well out of the question.
Surprise surprise I am single. I was given Medicare early but I don’t know what it will cover and with my limited funds (unemployment for at least one more month) I don’t know if I am wanting to try any more drugs again.
I had two anaphalaxis attacks to Remicaid and Orencia so I don’t think I will be able to go on any IV drugs again. Possibly humira….but I am so tired of the whole bs of it. Having to give myself shots, take this to counteract this, stop doing that…boy am I negative nelly today.
Daily life is a struggle. My parents are my only support system and they are 80years old and 86 years old so they will not be around to much longer. I tend to push people away because generally they leave me anyway. I am alone except for my 100lb dog who I walk 3x’s a day. I work out lately on my recumbent bike almost everyday for 30-40 minutes now that I have good knees. I gave up drinking beer and wine – but yet I am still one sad loser of a flesh bag. I don’t want to be a burden to people so I always do things on my own – even when I shouldn’t – paver stone patio project which now has wrecked my wrists, fingers, elbows…oh I am just tired all the time and tired of being tired and tired of myself.
Any ideas of how to get a job when you are older, have an obvious health condition, not happy and sad and can’t use your arms, elbows or fingers?
old sad erika
Good on you Kelly – really feeling for you & with you.
One thing I notice, & kind of resent, is how I seem to dumb myself down when in front of the doctors . Now I just try to pay attention to the few vital bits of info that they may come out with & minimise the rest. However, have just found a “real person” gp, a lovely lady who didn’t even cause my bp to spike when she took it – lol! that was a first. All the other doctors are wearing those welded on masks so they don’t have to really communicate with you. I think they must be handed out when they pick up their degrees.
Anyway … was finally correctly diagnosed with RA a few days ago after 4 years of progressive decline after the first rheumie said “No, but you do have Fibro” – I never did feel I fitted Fibro. Have been started on Plaquenil & Mobic.
So much I could say! I never let on to a dr when I know more – it’s such a strange dynamic – and will be hard to change. The book The Empowered Patient by Elizabeth Cohen describes testimony from numerous physicians who are patients and have the same issues when they are in the patient role.
And about the diagnosis – I’m glad you finally got the accurate diagnosis and I’m sorry it’s something damaging like Rheumatoid. Your case of 4 yrs of decline w/out an accurate diagnosis is exactly what I’m so concerned about with the FMS label that’s put on so many people – when their symptoms are correctly identified, there is often a disease process going on that needs to be identified & treated..
You are not alone.
Done all that :((
And yes, the bathrooms, and they expect you to hold on to the little jar on top of trying to not touch a thing. And then you have to try to open the bathroom door with those darn round handles. Every task has its issues and no one realizes it.
Yes, you’re right – opening a round handle w/paper around it – and trying to make sure your purse doesn’t touch the floor.. so many techniques necessary. 😛
Dony worry about your post being ‘long’…it’s reality and I am glad you took the time to write it… I understand… I was diagnoses with RA at age 17… And have developed sjorgrens and thyroid disease along the way… As a now 44 year old, reality is long and painful and messy sometimes… Keep fighting, my friend…
I know the battles you do on a daily basis….
Thank you so much Pamela. Those are some of my co-diagnoses as well. People really have no idea. It’s embarrassing to let it (almost) all out, but I hope it helps someone.
I can totally relate to this post, thank you for sharing in the hope others will understand. As I was reading the part about not crying out doesn’t mean your not in pain I had a sudden pain so excruciating I cried out – at least my RA still has a sense of humour!
Thank you, Kelly. It seems you are such a ‘lady’ and it is sometimes hard to put it all out there. Based on our experiences of trying to tell all, I understand choosing to become stoic and withhold a lot.
I lay here in tears today with many of the same symptoms you describe so clearly. Throw in a violent reaction to a fentanyl pain patch for the past 24 hours and that about sums up my experience, too. I just came from a centre where people with our disease are supposed to be believed. Also, visited my rheumy, too. It does feel so bizarre to feel not believed. To feel misunderstood. The feeling I get is that it couldn’t possibly be as bad as I am trying to share. Thank god I learned long ago to trust my own integrity – but it is very very challenging to feel not believed.
Here is another clinical practice or research question I’ve come up with based on what I perceive is a disconnect between the science of rheumatoid disease and patient experiences:
What objective diagnostic tests can be used to evaluate the anatomical changes or functional changes of tendons, muscles, and ligaments in patients with rheumatoid disease?
It doesn’t seem to be rocket science to me that when joints are destroying themselves there is pain and lack of function in the joints as well as associated tendons, muscles, and ligaments. My last range of motion test on my neck with my rheumy was at about 30% but there’s not much in an objective way (diagnostic tests ordered or done) to explain it. I was just diagnosed with a muscoskeletal pain disorder in addition to RA. The lack of scientific knowledge about this disease just seems criminal to me.
Hi Kelly I woke up to your post this morning and feeling so bad for you today. Don’t know why I can’t take off the gloves with my Rheumy. Well yes I know. She has a terrible bedside manner! Got word from her yesterday on MRI results. Not good. She wants me to have back surgery! I told her no. My sisters have had 3 each and are worse off than in the beginning! Then she said do I want pain mngmt. No I just got shots from u and my back is good. As long as I don’t use it! She said what do u want to do and I said “nothing” I’m sure that will go Down in the records for Not that bad. Oh we’ll just another day. I read your post and thought to myself “Quit Whining”! Somebody else is always worse off than me”! Sorry for ur pain! Gentle Hugs!
This has been a “professional patient” week for me as well, and your thoughts are so similar to my own. I’m re-establishing my complicated medical care in a new state, having to figure out a different medical structure for doctors, hospitals, etc. and meanwhile trying to be both brief and thorough with my new providers, most of whom are in a rush for reasons pretty much completely out of their control.
Meanwhile I am living with my MIL temporarily, and I’m realizing just how much she does not understand about RA, even after being with her son for ten years! It’s depressing, because she is a good person who isn’t very good in the warm fuzzy role but does care. If *she* has problems understanding, no wonder everyone else does too.
Many thoughts have been going through my head this last week or two about the difficult spot RAD patients are in. I haven’t really found a way to talk about RAD without it being somehow interpreted as complaining, no matter what approach I use.
There aren’t words to express how grateful I am to you, Kelly, and to the rest of the RA community, for sharing your own difficulties and triumphs. I wish none of us had to deal with any of it, but at least we can support each other as we battle through best we can.
I have had RA since 1973 and have recently noticed the connection of food allergies and RA. Almost everything I love to eat I am allergic to. I don’t get a rash or breathing problems but I think these allergies have so much to do with pain and joint damage. I wish that I knew this before I had all the joint damage. I have had hand joints, knee joint and ankle joint operated on. I suggest anyone with RA to get tested, blood test and skin tests. I feel much better by keeping away from the foods that showed positive. There was a recent study that showed the connection. I hope this helps someone else!
Liz – I’m somewhat recently diagnosed (about a year ago – but looking at my health issues over the last few years, suspect I’ve had it for at least several years) and just started treatment.
Anyway… while doing my RA research – and more specifically, in the area of diet and RA – I also noticed mentions of connections between food allergies/sensitivities and RA. That triggered a big light bulb in my head, as I’ve had significant food allergies/sensitivities that began between the age of 12-13.
In a nutshell, I’m allergic or sensitive to all raw plant matter (fruits, vegetables, nuts, grains, get hives from sitting in grass, etc.), though over the years I’ve started to be able to tolerate some things in various amounts (yes, it’s always funny when someone suggest to me that I need to try juicing as it might “fix” my RA… sorry, but I can’t do that!).
So I’m not sure what that means in regards to finally ending up with an auto-immune disease, but I find it very interesting that I’ve had food issues for most of my life and that food allergies/sensitivities appear to be somewhat auto-immune related.
Thank you Kelly. I appreciate your writings as well. My symptoms are not as severe as yours but feeling ‘bad’ none the less. We have to be positive and keep going – the alternative is even worse. Thank you for all of your work.
Keep the faith Kelly. You may feel it but you’re definitely not alone in this. God bless your patient children.
Your article hits the nail right on the head. The average person does not understand what living with RA is like. My father was severely crippled by RA. He started with it at age 30 right before I was born. So I lived *WITH* RA my whole life. But I didn’t know what it felt like till I started with RA att age 39.
Thank you for your post. I have a friend who is dealing with Rheumatoid Arthritis. And maybe I should say that I “had”
a friend with the illness. She thought I was being too invasive when I was trying to learn ways in which I could help her (she lives in Arizona. I’m in Ohio) … and so she shut herself down from me and told me to never contact her again. I wish there were something that I could do for her. to read your column/blog helps me to realize what all she is going through. Is there any way that I can help, without offending her? Please let me know. I’d like to help, if I can. Thanks again. — John
John, Sad to say, you probably shouldn’t try to contact your former friend. She has made it clear she doesn’t want to hear from you, and if you persist, she might report you for harassment or even stalking. HOWEVER, if you have a mutual acquaintance, you might ask that person to give her the information about Kelly’s excellent blog – without mentioning you.
If there was a true friendship between you, eventually she may contact you, again. And at that point you could mention Kelly’s blog. Many of us RA’ers don’t like people prying into our symptoms, and at least some of us would prefer non-RA’ers not offer suggestions. This is a disease with so many misconceptions “out there,” that it is difficult to deal with very many conversations about it – other than with physicians. For every patient who, like I, don’t mind talking about symptoms when asked, there are hundreds who would prefer to hide them and try to pretend they are “normal” to their friends and relatives.
Your heart was in the right place, but you didn’t judge the situation correctly. I’m sorry you have lost your friendship with her.
It is amazing what we endure in a normal day that others don’t think twice about. Sorry you had such a rough time with the labs. Good thing you had someone with you, I usually go myself and then hate that I didn’t take anyone with me once I got there. Hope you got some R &R when you got home. And hopefully they will get all your lab results processed correctly this time.
I know this feeling of being “Stoic”. There are times to be this way – in front of certain friends and aquaintances, people who you don’t need to open up to completely. But in front of our doctors – NO WAY!!! Let it rip! Complain! Tell them the truth! Break down and cry if you have to! They are here to help US – we are not there to make them comfortable. And if the bathroom is dirty tell them so – find a new lab if possible. These companies get a LOT of money to provide care to us. BEING A DOORMAT IS NOT LADY-LIKE! Sorry … I am not yelling at you … I am yelling out into the e-universe for all of us who have swallowed our own suffering in order to make others comfortable. Put your foot down … ok, you might have to do it very gently and quietly … but you know what I am saying!
That’s how it should be, I agree, but in real life, it depends on who your rheumatologist or PCP is.
If they don’t see “objective” evidence of your suffering, some will categorize you as histrionic, catastrophizing, etc.
And when that happens, good luck getting them to take you seriously.
O mi gosh Terry – you hit the nail on the head there – as I have learnt over the past 20 years of having to visit doctors, you are really sunk if they hear or see anything that could be construed as “mental illness” – you can kiss goodbye to any further realistic dialogue with them, they just colour everything about you with that label forever thereafter. Hence why I try to present as very composed & together, lol! v. difficult sometimes.
And, oh yes, that reminded me that quite a few times over the past years when I was suffering massive fatigue & brain fog PLUS muscle pain, I would be diagnosed as having some form of depression (if I presented all upset they would go for Bipolar, if I was really wacked they would say “Major Depressive”). And then that “mental illness” diagnosis would stick out of my notes wherever I went & would always be the FIRST thing that a doctor would pay attention to.
Then they would try me out on a LOT of different psych drugs that did nothing to improve my condition & quite often would actually make it worse as per horrible side effects. Oh brother! So of course I slowly learnt NOT to go to the doctor unless really, really necessary – which may have been a bad thing as far as getting the correct diagnosis & treatment of the RA … oh well, I can that this is pretty much the same for a lot of people with RA which is kind of comforting, a burden shared is a burden halved as the old saying goes.
This article embodies what a lot of us go through on “doctor days”. It’s very frustrating because your whole body hurts! How do you describe that to somebody without them thinking “yeah, right”? Sometimes, I tell my doctor “well, my tongue doesn’t hurt” 🙂
Thanks for writing this Kelly. Most of the time when asked how I am, I just say about the same also, because to go into what’s really going on would be too exhausting.
Kelly, thanks so much for your post today. I cried as I read it. My heart goes out to you with your horrendous struggles. Bad enough to put up with the unimaginable pains and limitations, but there is no excuse in the world for the conditions of the bathroom and lab personnel. I feel so blessed to be treated by a rheumy who listens and explains so well. And their attached lab is clean and the phlebotomist is as gentle as possible. I can’t even find the words to describe how I would feel if confronted with a dirty bathroom in a medical area. I know you do, but take special care of yourself today and know there are lots of us empathizing.
Thanks for taking the time for this! I have an auto-immune called Reactive Arthritis. I’ve only been diagnosed for a year, so I’m still learning. But symptoms are quite a bit the same as yours. I have a neg rheumatoid factor, though.
I see myself walking in your shoes, daily. Going to doctors over and over and feeling they never truely understand your pain or discouragement. I’ve found a support group that helps. At least I know I’m n
…not alone. I am thinking there is a desperate need for a listing of doctors with experience in these areas! Not just, do you know what it is, symptoms and suggested treatments? But an actual idea that could list how many patients with this specific condition the dr has treated. It’s so frustrating! I know I’m forgetting to ask the dr about something or leaving a symptom from last week that I’ve forgotten off the list. Then there’s the frustration wondering if you’re having a flare up or are the Rx meds just not working since they take 4-12 WEEKS to rake effect.
I hope and pray you find some relief soon. Tell you what: I’ll grab one finger of that glove and help pull it off, ok? Thanks again for your honesty and bravery.
I agree, Liz. in 2009, I stopped RA meds with. the intention of never going back to the rheumatologist. I had been on methotrexate and enbrel for years, with the best results. in the final 2 years of treatment I also had been restricting Carb intake, no bread pasta, etc. I had no.RA symptoms, so I stopped the meds, and the doc predicted he would see me again in three years when I came out of “remission “.
it’s going on 4 years now, although I thought I would have to go back after two years, when symptoms began to return. I am persistsnt, however, and after a lot of research , I found out about functional medicine. this doc tested me for allergies, and other lab tests. to measure vitamin and mineral levels, etc etc etc. I tested positive for numerous foodallergies, including a sensitivity to gluten, although not celiac.
my digestive system was a mess, due to intestinal permeability, or leaky gut. I take digestive enzymes, and hcl pharmaceutical grade supplements with no added dyes or allergens, and eat organic as much as possible , and try to avoid pre-packaged foods.
I’m still on this journey, but I feel much better these days, and feeling confident I will never see the rheumatoid doc again.
“Can anyone else see the irony in people thinking we exaggerate symptoms that are so much worse than we say?”
This whole blog made me cry, but especially the line above. I constantly diminsh my pain, my limitations, my disease. I say that I am okay, that I am fine – when I am so far from that. I say that I am grateful that it is not worse than it is. I never cave in and take the gloves off except if I am alone and so weary that I cannot keep it all in anymore
Kelly, reading your post was like reading a post made by someone in a third world country! I am astounded at the things you have said about your doctor, the lab, the dirty restroom with ROUND doorknobs. Makes me feel so fortunate to have an excellent, caring and understanding Rheumatologist that rarely keeps me waiting more than 20 minutes, and a Gen. Practice Dr. that is also excellent and caring and ALSO sees me within 20 minutes of my appointed time. My last visit with the GP (a couple weeks ago) he spent nearly 45 minutes with me, reviewing everything about my health (my RA, a bout with vulvar cancer, possible blood sugar problems, my fatigue when exercising) and he ordered several xrays and blood work. I had not seen him in about 18 months, and had only come in to get some vaccinations. The lab I use has wonderful, friendly techs and is CLEAN. Every medical facility I have been in has levered door handles. My heart goes out to you when I read about your knees. I am one of the “lucky ones” – 6 years of having RA and have been in remission MOST of the time. Two days ago I had some more leftover turkey from Thanksgiving, and the nite before last I spent all nite with strong pains throughout my left arm as a result (food allergy…when you eat the same thing too often, you can develop a reaction to that food. I should have known better, as eating turkey a few days earlier had caused my hand to swell up.)I have great fears that the treatment I am using my stop working one of these days…and I have had plenty of relatively brief periods with some very stong and debilitating flare-ups to know what that is like. Have you thought about finding a new doctor? There are some good ones out there!
I’ve not ever commented on here, although I’ve been reading for a while, but this post really struck home with me. I’ve had really bad joint pain, stiffness, mild swelling, awful headaches, etc. for a while now, but it really got bad in February when I had a day where I could barely move. I know that’s every day for a lot of people on here, but it was a big deal for me, and I decided to go to the doctor (which I rarely do – I have hashimoto’s that took 4 years to diagnose because doctors just completely dismissed all of my symptoms, which leaves a bad taste, you know?).
I am now going through the same thing again–my symptoms match up with rheumatoid arthritis, but it seems the very minutes a 30-smething women presents pain to a doctor, fibromyalgia is diagnosed. It just doesn’t fit–I was given a pamphlet on it, and the suggested treatments for my daily pain is yoga, antidepressants, and blowing bubbles. I am not depressed (unless I start to think about paying doctors hundreds of dollars to pat my head after 10 minutes, dismiss all of my symptoms, and tell me it’s all in my head). The hospital’s official fibro book actually tells patients that they are just processing pain differently, and feel it worse than everyone else. I gave birth 5 times (without epidural, I might add). I just find the idea that I can’t handle pain so insulting.
Sorry this is so long (I feel like I could go on and on)but I know where you are coming from. I could see it in the doctor’s face, as soon as I started to say I had pain here and here and here, and frequent fevers, and even huge, hot, swelled hives are over the place, that she didn’t believe me. And this was a rheumatologist –the first I’d gone to, and she didn’t even do blood tests, or really talk to me.
really feel for you Averyzoe & can soooo relate to yr experience of being dismissed for years & misdiagnosed with Fibro too … <3
I hope you get answers soon averyzoe – no matter how common this is, it is wrong.
I also have Hashimoto’s disease that took a long time to be diagnosed – a year of missed school when I was 15. Like you, I gave birth 5 times with no medication and each birth did not get easier as I anticipated. You are correct that when they just say we cannot handle pain, it is insulting. That is said without any knowledge of what we have accomplished or endured in our lives and it is said for only one reason: they don’t know the right answer. They were trained that if they do not see open bleeding or conspicuous swelling, then there is nothing going on.
I agree that I’m very weary of paying hundreds of dollars to be patted on the head. Blowing bubbles and anti-depressants are no proper answer for a destructive disease process. There is no excuse for a rheumatologist who does not tests or give you a look of disbelief instead of discussing the problem you’re having. I do believe you because I’ve met rheumatologists like that and heard it from several hundred patients, but there is no excuse for it.
Oh Kelly, I so relate to your whole post. I have a wonderful rheumatologist who takes me at my word even when I look ok, and my other doctors are generally respectful….but I often have the feeling (and I don’t think I am being paranoid) that they really don’t think it’s that bad. “But I want to be believed and understood”, and your next few paragraphs are so exactly how I feel. I plan to print your post, and maybe share it with a few (carefully chosen) people because you have expressed our shared experiences so well. Thanks Kelly.
How can it even be legal for the restroom at the lab to be without a sink? Find a new lab, Kelly, even if the location isn’t so great. Ick. makes you wonder what other shortcuts they are taking.
I don’t consider myself particularly medically astute. I do know what chronic illnesses I have and how to spell them, I know the names and dosages of the drugs I take, and why I am taking them, I know what drugs I’m allergic to and what types of cancer killed my father and sister. More than one doctor has asked if I have a medical education, and the question doesn’t always sound like a compliment. (My education is actually in fine and performing arts!)
To me, it’s just part of being a responsible person. If I can’t remember, or can’t pronounce, the name of a drug I’ve had an allergic reaction to, I’m putting myself in danger. I’m not trying to be a smartass, doc, just competent. And safe.
Having no sink in the lab bathroom probably has to do with the fact that they also do urine tests for drug abuse. When people are getting urine tested for drugs, they will fill the cup with whatever they can find…..and since most urine drug tests will also test for temperature some people will run the hot water from the sink.
Thanks Samantha – that does sound like a good explanation, especially considering the county where I live. I’ll bet you’re right.
Thank you, Kelly, for being real. I so understand what you are going through….especially today. Do you think that the meteor showers or something could be contributing to all of the RAD flares? Nothing has been able to get me at all confortable for the last 3 days. I am still new to the diagnosis(5 mos), so I don’t know my body’s reaction to meds, food, or weather yet.
Thanks. I don’t know Samantha about the meteors but my disease is the same every day. I only know about the idea of “flares” from talking to others. Specific joints do get worse and then not quite as bad for a while, but are never even close to normal and if one is even a little better one day then the others are worse. It seems there are different patterns with some people having only certain joints involved and other people having all joints involved. And some have constant disease activity (maybe about a third of us) while others have “flares.”
Thank you so much for talking about flares. I feel exactly like you. I dont get flares and remissions. I have pain and swelling all the time, some days are better than others. Sometimes my feet hurt so bad I cant walk, other days its my hands that dont work or my knees are killing me.
I’m so happy you spoke about this. Have you ever had a remission? If so, how long did it last? I felt good for two days in a row last week, is that a remission or just good luck?
Daer Kelly, I was finally diagnosed with Sjogren’s Syndrome early this year – I had been having excruciating pain in my feet and went to many specialists. many doctors told me there was no reason for my pain, but luckily my GP believed me and I was put on Hydrocodone – was on that for about 3 years before it stopped working, so luckily he put me on oxycodone – 4 15mg pills a day…eventually I needed a fentanyl patch with it. He was the only doctor who believed me! Sometimes my foot (sometimes left, sometimes right) would swell and get red and extremely painful – thank god that doctor believed me!! That was befor being diagnosed with Sjogren’s. I had never heard of it and apparently neither had any of the other doctor’s I had seen…I’ve been on the fentanyl patch and the 4 15mg pills of oxycodone for more than a year now and net week have to go to a pain management clinic because pain is starting to get worse again. I’ve just been diagnosed with Fibromyalgia, too. I don’t know how anyone with constant pain can live —thankfull there are painkillers, which, when a doctor believes you, are lifesavers! Good luck to everyone who has written above!
Jeff, I read your comment twice already and there were so many things I’d want to say to you. I’m so sorry for what you’ve been through both with a mean illness and with not finding answers for so long.
When “many doctors told me there is no reason for my pain,” we have a problem. And in rheumatology, we definitely have a problem. I’m so glad you had a compassionate GP who would treat the pain and help you get through, but there is always a reason for pain and THAT needs to be known and addressed. Telling you there is “no reason for pain” is just because those particular doctors didn’t know the reason and didn’t know how to find out. It is an excuse not an answer.
The swelling of your feet along with the “excruciating pain” does sound like possible RA so that may turn out to be the answer eventually, but I hope you can get another opinion and find out for sure what’s causing that. Fibromyalgia syndrome or FMS is a label for unexplained muscle pain that is widespread and diffuse. It does not involve swollen joints like hands and feet or inflammatory or autoimmune indicators as RA or even Sjogrens do. It is now suspected to be a “pain processing disorder” but it’s a label very often given to someone who does actually have some orthopedic issue that needs to be addressed, including various diseases that affect joints and soft tissue such as RA or Lupus. Here’s an article I wrote about that discussion: https://www.rawarrior.com/fibromyalgia-diagnosis-do-they-know-for-sure/
I agree with you that thank goodness for pain killers but you deserve answers and proper treatment for whatever is going on. Good luck to you!!
Hey, I also have sjogrens , I was actually diagnosed with that before RA. Because I carried only the SSA antibody the rheum did believe I had more going on. I then was also dx with mctd and of course fibro. He was right!! I finally had the positive blood work that he needed for a RA dx . I do believe I may have had RA longer but the doc wanted positive blood work . Anyways Sjogrens alone is painful, and can cause more then just joint pain in some people.
My prayers to all:)
Hi Bonnie – I’m sorry for the time you had to spend without a diagnosis. There is no reason to avoid an RA diagnosis just because there is not a positive rheumatoid factor, or positive inflammatory markers. Each of the tests may be present in some percentage of RA patients, but there will always be a percentage of patients who have negative results. In fact, “sero-negative RA” is an accepted diagnosis! I’m really sorry that you didn’t get this diagnosis early on, and receive definitive treatments that would have slowed down the disease process.
I went through the “your RA labwork is negative so there isn’t anything we can really do” for nearly 25 years before I finally had a positive lab test. It was long enough ago that they weren’t using MTX, so I was treated with what was there: indomethacin (Indocin), butazoladin (now labeled just for horses!), Ibuprofen, and ketoprofen. Eventually I developed GI bleeding, and was taken off of them all. Finally, I had a big flare, and was diagnosed for sure by a positive Rheumatoid factor. By this time, MTX was being used pretty routinely – wish someone had put me on it before – would have saved me a LOT of pain, and maybe slowed down the progress of the disease.
Thus, I’m a strong proponent of early diagnosis and early, definitive treatment for RA.
I have had more luck with nurse practitioners and physicians assistants for my primary care. The current PA I see is so amazing, she GETS my autoimmune conditions etc. As does my ob/gyn, who during my annual exam will carefully ask me “are you able to exercise at all?” and ask if she needs to make adjustments to the exam table for my exam. Even my dentist understands why I sometimes can barely open my mouth, why I might need a child sized bite block, and the affect of my disease on my oral health. These medical ppl were not easy to find, but it makes SUCH a difference to be believed and understood at every step of my care.
I’m pretty upfront with lab ppl. Right away I say “left arm has good veins here (I point) and my elbow does not straighten”. If they ask me to grip a ball I tell them I cannot squeeze it. Otherwise they try to hank my arm straight and squeeze my hand for me. Not going to happen.
Ugh Kelly, I have been there with oblivious docs. If she is that clueless about your RAD, perhaps you could find someone who “gets it”? My former ARNP and current PA both were better at understanding the whole patient than others. Hang in there. I find it exhausting to deal with ppl who don’t get it, I’ve been there in the past. Best Wishes Kelly. You deserve better.
Oh, and yesterday was “doctor day” for me too. Super exhausting. I did that, and then I had to rest all day to make it to my son’s winter performance (60 minutes) and I was WIPED. Doctor days are hard physically and emotionally.
I am a volunteer with a group in Canada. I have been trained to teach HCPs of many sorts how to do a complete musculoskeletal exam. We usually do this in pairs and most often with a rheumatologist at hand. I took a copy of my hand X-Rays in to a session because last time the doctor thought it would be beneficial to have the students see them.
Now I have seen my Xrays often and these were 5 years old, but I was stunned at the amount of damage to be seen. And I tend to feel sorry for people with RA online who are having such a hard time and to emphasize how well I am doing, but after hearing an evaluation of my hands I must say I feel sorry for myself right now. There are 8 bones in each wrist and if you look at my hand Xrays none are distinguishable.
On the plus side for those newly diagnosed I must add though, that hands in those promptly treated means that you would seldom see that extent of damage any more.
And the Dr commented that my RA is inactive because the joints can be felt bt students and don’t hurt much but I disagree on the status.
On the plus side I did get a pneumonia shot and also a blood test. Progress!!
There have to be better diagnostic tools. I’ve had MRI, CT, xrays and dopler ultrasound. The test that showed the most extensive erosions of hand and feet was the dopler ultrasound. The largest erosion is more than 1 cm. I have 3 joints severely involved on right foot, 2 on the left, 2 on the right hand and one on the left. Synovial pockets were also noted as well as active inflammation. The x-rays of hands and feet showed no visible disease or damage. The CT and MRI were of the spine and knee. I have some disc degeneration of the spine and osteo but the MRI of the right knee was normal, which I don’t believe given I could barely walk using the right leg during that time and I had conspicuous swelling of the knee. Sad to say, but I’m glad my RF and CCP were both positive and further evidence was provided by the ultrasound. What a misunderstood disease !!!!
We do need better tools and tests. But looking at your comments also, there are some aren’t there? If someone had the expertise to examine every involved joint with the proper tool, evidence could be found of the reason for the symptoms. A very tiny percentage would be left where a large percentage are today with an added label of “FMS” or “some pain symptom or other” that is a catch-all for anything that is not swollen in the office or has an erosion showing up on standard car-accident x-rays. (My radiological technologist explained to me that the standard car-accident x-rays ordered for me last time would not show rheumatoid disease but showed me a book 4 inches thick of various postions to be used for various diagnoses…) An obvious problem in addition to the scarcity of tools is the scarcity of expertise; there is no one trained in Central Florida to do musculoskeletal ultrasound. There are a few machines for guiding injections but no one is doing diagnostics with it yet. I’ve called all the major hospital and orthopedic centers except down in Tampa or Miami (south Florida). The other obvious problem for this is that many of us have every joint involved – so it would take a long time to document the all of a patient’s issues that cause him/her to have so many problems. People do go years and years with no diagnosis even with many joints involved and that is very say. But it is also sad to see how many are diagnosed but are still mis-labeled and misunderstood or do not get proper care because of the clinicians can not comprehend the extent of the problems, articular or otherwise.
I’m new to your blog, but reading your words today makes me feel not so alone. My family doesn’t understand because I just keep doing what I’m supposed to. No one sees or understands the pain, the frustration, the fear, the total aloneness of this disease. I left my first rheumatologist after two years because he was sarcastic and wouldn’t talk to me. I have a good rheumatologist now – he listens and works with me. I go to the lab and, since this diagnosis of RA, they cannot hit a vein if you paid them. We sit there praying we can get enough for all the vials. I see my changes in my fingers and toes and it scares me.
It’s just nice to know others understand. I’m so sorry anyone has to experience this disease, but I don’t feel so alone reading others’ comments.
thanks Maddison. It seems like an important first step for this disease – that we can have a connection with others and know we are not the only one – that what we experience, others are too. I’m glad you found us.
“Can anyone else see the irony in people thinking we exaggerate symptoms that are so much worse than we say?”
AMEN! I am very guilty of this, especially at the doctors office, I totally downplay my illness/symptoms. I think you kind of get used to people not really believing you or or telling you they too have arthritis and are just fine, etc. It just seems it is not acceptable in this society to be sick and after all, it’s “just” arthritis.
I think I am “guilty” too the way you describe Emmy. What can we do? We can’t say it the way it is because we know they won’t believe us? How will we break this cycle of ignorance? We must band together and support each other.
My RAD causes the most pain in my hands, palms, wrists and elbows. I have a professional job and my whole view on shaking hands when greeting people has been derailed. I used to admire and respect a firm handshake. Now, I am so afraid to put my hand out there when meeting new people. I don’t want to just blurt out that I cannot shake their hand because I have RAD. I feel like a first impression like that will cause them to see me as a coward or whiner and then they will see me as just my disease. So most times I suck it up and hold my breath to shake their hand while cringing on the inside. How does everyone else deal with shaking hands?
Yes, the handshake is becoming unbearable for me too! I don’t think fast enough and end up getting some very firm and painful handshakes. What can we say to avoid it?
I use the RAD handshake that Kelly has a vid of somewhere. I move my hand right past their hand and grasp their upper wrist. Then, as we shake upper wrists, I explain I have RAD and my hands are very painful. So far I’ve been doing this about 3 years and I haven’t gotten a negative response yet! My rheum doc had a medical student shadowing him one day when I had an appointment. The med student wanted to shake hands. I just reflexively went into the “wrist shake,” while my rheum doc did the explanation. He was pretty happy to see me do that spontaneously. It just takes practice. I’m fortunate to have 11 grandchildren, most in their teens, now, to practice with. My husband AKA Himself and I practice it from time to time. When a new person comes to our home and I start to shake wrists, Himself explains what I’m doing and why. People are always interested, and respond positively. It’s probably because both Himself and I are positive in attitude and assertive about it.
So many prayers and hugs for you. Love this post. Not because of what you are going through, but because of it’s honesty.
You’ve asked for a caregiver’s input so here it is. (I think the “when” in the caregiver sentence should be a “then”.)
This sentence “If the pain never leaves, you have to learn to tolerate it, and that’s what we do.” is the whole post condensed it a phrase. Kim has said to me multiple times, “I hurt. All the time. It doesn’t matter whether I’m laying in bed or whether I’m doing something. Therefore, if I’m going to be in pain anyway, I will be doing something.” And that is the practical attitude of Kim that you summed up with your sentence. This doesn’t mean that she is doing “well”, because she’s not. This doesn’t mean that she isn’t hurting, that is the furthest thing from the truth. It simply means that she has chosen to do certain things where she has determined that the benefit she will derive from that will be worth the pain.
For example, Kim loves kids. She chooses to work in our church nursery because the enjoyment of her time with the children is worth the pain. However, and most people don’t know this, our 13 year old daughter always works with Kim because she knows what Kim can and cannot do in taking care of kids. She can sit on the floor and read books with kids, but rock a newborn for more than a few minutes? No way.
But the real question is the honesty behind the stoicism. This is one of the hardest things to deal with. We have a great group of close friends who consistently ask how Kim is doing and how they can help. The truth is that of those friends, only one couple really know what is going on and that’s because the woman has lupus so they “get” what it’s like to live with a chronic disease. I don’t feel that we can ever be fully honest with the rest of our friends simply because it seems outrageous to explain the reality of all of Kim’s symptoms that she deals with every day. That peeling a kiwi causes her fingers to lock up and spasm uncontrollably. That her feet constantly cramp and the tendons lock up and that she has numbness now in several of her toes. That her pain level is so bad that she is taking — in addition to her Rheum drugs — tramadol, excedrin, tylenol, and is wearing lidocaine patches and is still in pain. How do you explain that to someone?
This week we go back to the rheumatologist. The gloves are coming off. In thirteen months Kim has progressively worsened every month. She now has knee and hip pain so severe that she can’t cross her ankles. She knows she can’t bend down and get anything off of the bottom shelf at the store anymore. She has so much back pain and joint pain that she has even considered taking the various narcotics she has been prescribed even though they tear her stomach up severely. So this next visit we will bare the truth with her doctor. We need to know what our next steps are.
Your story is beautifully expressed, Eric- which I’m sure feels bittersweet. Kim is lucky to have you as a husband and I’m sure she brings many wonderful gifts to you, as well. I’m hopeful that social media and our collective voices of people with this disease, caregivers, and doctors will mean that the medical community and researchers will no longer be able dismiss all the symptoms that are so common among us. Kim’s story is similar to my story and similar to so many others who are sharing on rawarrior. Your post is a powerful one and I’m grateful you took the time for us to learn about your family’s experience with this debilitating disease.
I am still dumbfounded that there aren’t more diagnostic tests to quantify the destruction of ligaments, muscles and tendons associated with joint erosions. If anybody has experience with particular tests used to exam the integrity of ligaments, muscles and tendons, I’d love to know. In my situation, the specific disability with muscles, ligaments and tendons is not being directly addressed, rather, I’ve been given a new label in addition to RA: “general muscoskeletal pain disorder” which doesn’t really identify the anatomical and physiological changes I know are occurring. I’ve been using a 4 wheel walker and will be getting a power wheelchair soon.
This is in no way meant to be a full reply to your comment, Helen. But I want to put my own words right here below yours, to say that this is one of the central problems we face as Rheumatoid disease patients. Multiple various labels have been attached to rheumatoid patients because of the lack of medical knowledge or adequate diagnostic tools to quantify this problem that you describe of soft tissue injury caused by disease activity. There is undeniable evidence of this ongoing destruction and it has been documented for decades. (What do people think causes deformity?) However, patients who make any medical complaint to loss of function or of pain that is not associated with erosions that show on x-ray (a very late indicator of bone destruction) are almost invariably labeled with such invented terms that are only modern methods of saying “I don’t know” or “I’m not sure I believe you.” There are dozens of examples and your new label is just one.
This is only one of the most important parts of our mission to make the medical world understand what this disease actually is, unfortunately.
Dear Eric, please read my reply to Kim.
I suspect that her working as a nurse and the other things she continues to do as a mom fill up her life with the added burden that this disease places on a person and that she does not have time or strength leftover to blog. So, in addition to your voice as a caregiver, you are also her surrogate in our community when you report on her condition as you did today. Both roles are invaluable and I think you know how much your voice has been appreciated, valued, and needed within the community.
Kim’s condition, the way you describe it, seems typical to me with this disease. I don’t want anyone reading to think otherwise. And, the way her condition is understood/ not understood is also typical. That is a sad part of this post – that the day I described is entirely typical. It was typical of my disease and typical of the way it’s perceived & treated by others. Only Katie Beth knows most of my disease and she does not know all. In Kim’s case, there is you. In each case, there are also a couple dear friends who care & know a lot, but still not all.
A post like this is hard for several reasons. How do you get the gloves off when it’s the only way you’ve lived? And we hear the voices of those in our heads who we know will scoff and call our honesty “drama.” It was hard, but explaining the details once in a while like I did, and like you did, may help someone whose job it is to care for people with this disease to see part of the reality that hasn’t been clear to them before.
I hope your appointment goes well. I can’t imagine a “taking the gloves off” appointment. Yesterday, I was more blunt with the nurse and doctor in a few areas, trying to get them to understand what my symptoms are, and they did not seem to believe or understand. When they say stuff like, “but you can still make a fist, right?” or “but you manage to get your bra on” it’s clear they do not understand the impact of moderate to severe Rheumatoid disease that takes away your former life completely. They do not realize the things I wrote here or that you explain here. Every day I get notes from patients telling me that when they try to explain the severe adjustments it causes to their lives thru both pain & loss of function, that they are told they have pain processing issues or depressive issues or other psychological problems that are the cause of their pain since the swelling doesn’t looks so bad while in the office or the erosions don’t look so bad on the x-ray (see my reply to Helen).
Anyway my point is that while this is in no way “acceptable,” it IS the norm. It is the norm that the disease has the impact it does on me, Helen, and Kim. And it is the norm that no one, especially the medical professionals, recognizes it. It is sad; it is what we hope does not happen; it is the reason we fight for awareness and more and better research… It is our MISSION that one day no one will suffer from this disease. But now, there are many who do suffer – and most of that is hidden.
YES, Kelly!! That crack about the bra brought back a nurse – a NURSE – saying the same thing at a visit a few months ago: “But you hooked your bra today, didn’t you?” She was totally befuddled when I said, “No. My husband has to help me dress, and he hooked my bra and helped adjust it on my breasts. He’s been doing that for 3 years, now.” I don’t know if she “understood,” but I hope it helped open some “attic windows” in her mind!
But I have had less problem “taking off the gloves,” because I have the credentials – and chutzpah – to be, if not understood, believed. Going to a new doc I do not avoid taking off my gloves. I’m fortunate enough to live in an area of multiple good-to-excellent medical resources, and if a doc (or even the entire practice) is not “simpatico,” I get a referral from my ever-helpful internist to another doc.
My heart goes out to you. I’m on IV Orencia now and it appears that it has given me more energy. I still have some discomfort in my hands, wrists, knees and feet but nothing like you are experiencing. Your post resonated with me because I do downplay my symptoms with my family because I don’t want them to worry. That just gives me guilt to deal with. I realize that I need to be more honest, especially when the pain gets bad.
Blessings to you, Kelly and all who deal with chronic illness.
Thanks for your reply, Kelly. I’m so grateful you have done such a wonderful job of bringing thousands of people with RA together with an extensive rawarrior mission. Please let us know how we can continue to help. The burden you carry and those who are organizers of this incredible organization, as well as the Rheumatoid Patient Foundation, deserve are heartfelt thanks and support.
I’m new to this..havent yet had my 1st Rheumatologist appt, Next Wed. I’m 47..BUT I think I’ve known since i was 23..every few years I go to a Rh DOC..and they look at my hands and say..you are fine. YET my copper levels were through the roof and was hospitalized because I couuld not walk..(they sent a shrink and gave me a colonscopy) I went to an orthopedist who because of pain..and carpal tunnel..he said I had fibromyalgia…and he ordered blood test, simply as precaution to rule out arthritis. HE was so cock and just knew what I had…he called THREE weeks later, after his vacation to say…you need a Rheumatologist. We dont’ have many here..I will see thelocal, then I’m headed into NYC for further diagnosis. I”m in so much pain, and have been for so long..but I”ve pushed through..which was probably both good and bad for me.
Pushing through is what most of us do, Lori. I’m glad you are so strong, but I really hope you can get some good help for this too!!
Twenty-four years is a long time to have problems and pain and no diagnosis isn’t it? The part about “looking at my hands and saying I’m fine” is the way many rheumatologists practice, but NOT ALL! It’s wrong and if you see a rheumatologist like that, it probably means you need a second opinion. The hands are not the measurement of the disease the way many of them were unfortunately trained to believe. They need to examine any joints where you are having problems and check the others as well for signs of swelling or changes. Also it is not possible for a “blood test to rule out arthritis” or RA – there is not a blood test that can do that, so if the doctor tells you that, he’s mistaken. Good luck with your appointment.
is it sad..I just want to cry that someone understands? I’ve 4 children, ..small children…I had my last at 39..They need me…. I’ve already mastered saying OH AH..silently..have for years… I walk down the stairs every day at 3a.m. in pain… I plug in phones, I make lunches… I do laundry, I strip beds, I’m so tired. I am the class mom, in two classes…I pack all four lunches…. I’m so tired. I’m literally exhausted.
I wish you would write like this more often. Not because it’s whining, but because it makes me feel a little more sane when somebody else describes the pains I have but nobody else seems to understand. My rheumie is a stiff, and I pay my uninsured $125/visit for ten minutes of, “Your hands do not feel swollen, make sure you keep taking ibuprofen.” “You have high rheumatoid factor but your joints are not swollen and you do not have morning stiffness, so I don’t want to say you have the autoimmune disease yet.” But she put me on HCQ.
So it does me good to know somebody else’s neck crinkles like plastic, or has knees that don’t obey, or who can’t manage to turn a round door knob all the time, whose fingers ache and other parts just plain hurt. I’m sitting here running my normal evening fever and bodyaches. My delightful wife and I stayed home from work today, each losing precisely half our weekly income, because she threw her back out yesterday. I literally dragged her by her ankles into the bathroom and put her on the toilet so she could go, and have been taking care of our infant all day long so she can rest, and I’d do it all again in an instant but I know I’m going to be in agony for the next three or four days.
I hope you’re not shy or ashamed about making this kind of blog in the future. Sharing your weakness gives weak people strength, and I thank you.
Thank you Tom. That means a lot to me. I hope things get easier in your house.
First of all I am terribly sorry for all your pain. Yes, I have RA too but I see a wonderful rheumatologist and am trying to understand why you are seeing a GP? GP’s are clueless about RA.
I hope you feel better and get to a good rheumatologist.
I see my gp for things like TB tests and immunizations. Neither of the 2 rheum docs I’ve had were supportive of immunizations with rheumatoid disease so this is the first year I’ve done any of them. I need to write about this topic as soon as I can. Also, my GP, endo doc, and gyn have seen me for several years and the continuity is extremely helpful w/chronic illness (I have numerous diagnoses). My GP has saved me on 2 occasions by responding immediately when I needed care & when a rheum doc would never have taken the call – once a kidney infection and once pneumonia. It seems like as I wrote here, one of the goals is to keep me out of hospital and I appreciate that. Even with the drawbacks I described, I also said I love this doc and his staff is caring and I stand by that.
What did they say before they “invented ” fibromyalgia?
This would make a great blog post. Some articles I”ve read speak about chronic fatigue and Epstein barr virus although I’m not sure if it’s exactly the same. Honestly Kath, the older literature is less dismissive of fevers, muscle pains, and symptoms that are well-documented but ignored today. I think the rheumatoid factor blood test that many labs call the “RA test” really began to confuse clinicians about how the disease is documented. The more tests like Rf or x-rays are relied on, the less the patients’ stories were believed. Also If you look at the older literature there has always been a theory out there of a “rheumatoid Personality” – that the people who have this disease have a mental component as well and severely exaggerate the symptoms. here is one article where it’s discussed: https://www.rawarrior.com/patients-rebuttal-to-ra-pain-catastrophizing-claims/
Kath, they said, “You’re a middle-aged woman: of course you feel like crap. Quit whining and get out of my office.”
I’ve had this since before I had kids. From the very beginning I would be honest with them and started explaining arthritis and pain to them from the time they were toddlers. I worked to teach them how to help around the house. By the age of 9 both kids were doing their own laundry, even my oldest who is on the autistic spectrum. My friend had her oldest packing lunches for the 2 younger ones starting in 3rd grade. Kids can change their own sheets, do laundry, swap laundry from washer to dryer, and empty the dishwasher. Yes, they made need a stepstool to reach the cupboards etc, but they can do it.
When I was growing up I did a lot of chores around the house. I don’t think we expect as much from our kids, or don’t want them to have to take care of us. But doing a lot for themselves, and getting them used to helping, makes a big difference in the long run.
Starting at age 5 my kids would run little “errands” around the house up and down the stairs fetching and carrying. Today they are 12 and 15 and can do more, like chop potatoes for dinner, carry my laundry downstairs, put it in, put it in the dryer, and bring it back up for me to put away. The kids change their own sheets, and pack their own lunches.
I know it’s really hard, I only had 2 (though my mom who had 5 kids said my oldest who is on the autistic spectrum was as difficult as all 5 put together), it was hard. Hang in there and I’m sorry you are having such a hard time.
Will this be better than the biologics ? SEE PS372-424
Appears attacks the real problem not just suppressing/killing the WHOLE immune system ?
I also really enjoy these types of sharing posts, thank you for your honesty – my heart breaks when reading how some medical professionals treat RAD patients.
I tend to become stubborn and insistent if the doctors don’t seem to get it. I sometimes treat my doctor visits like a business meeting with a supplier, speaking plainly and returning to topics until satisfied with the answer…..no one will fight for my health and well being unless I do.
Reading the post just made me fume….how dare they be rude and impatient towards you…it is just unfair!
I really appreciate yr tip to treat yr doctor visit like a “business meeting with a supplier” – I get that & am glad you mentioned it here.
A pharmacist, that I hold in respect, once told me that you should take a written list of questions with you to yr doctor’s appointment & be sure that they are all answered before you leave plus that you should always ask “why” for anything that the doctor tells you do including new drug prescriptions.
I was first diagnosed at 27. The thought then was I had had a mild form of juvenile RA. I was told that as long as I took my meds I would not get the deformity that happens with this disease. Now 34 years later I am still battling the symtoms. I learned to down play most symtoms. I moved to central Florida and had to start all over again. When I finally found a great RA specialist, he quit his practice to teach in Tampa; he said he needed to teach new upcoming doctors how to really listen to their patients. I finally made an appointment with the doctor he referred me to. He sent me to have 13 vials of blood removed. Now I’m seeing two more -ologists. One to check my lungs for excessive thickening and another for excessive protein in my blood. Each one is part of this autoimmune disease called RA. It has been a long road for me and when asked how I am doing, I reply “I’m improving.” Yes, this is a lie, but the person asking the question is being social and not really wanting to hear of my pain. I do see a pain management specialist but the pills only barely take the edge off, and for just that much I am thankful.
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Hi, I have been reading your blog since October. I am a nurse and am about to have my first rheumy appointment. You have been incredibly helpful to a world full of patients. Thank you so much for this post. I am lucky to have a good GP who listens, treats and tests, but she has given me tramadol, advice on nsaid doses, increased my aspirin, and did 3 lab tests then asked me to see a rheumatologist. I am not in the world of hurt that many folks live in, but the change from occasional back pain to HOLY COW my hands hurt every day since September has been something of an eye opener, to say the least. I still have a moment of disbelief every day I wake up, that it can’t really be like this. The decrease in grip strength is very upsetting, I need to work. So it felt really weird, a little good, but still a little like a failure to open up and go tell my GP that the tramadol for my back, well hey I have used it all for my hands, please help!
I am very nervous about seeing a specialist. So many of them, so many different specialties, are just jackasses. I didn’t mind it in my urologist, because a kidney stone is a thing with just about two ways to fix it, and it’s something that you have or you don’t so they can’t argue with you. But a rheumy.. whoa. That’s a whole nother story. So far the only thing my labs show is high platelets and persistent anemia. Apparently this life requires that I do this, so we’ll see what we will see. My goal is to work at least another ten years, pay off my house, and crochet till my fingers fall off. (one tramadol = two hours of crochet or ten plus hours of work)
I have to also thank you on behalf of all my patients with chronic illness since I started reading your blog. I have been a lot gentler than I used to be, and I thought I was handling people just fine. There have been some elderly patients who finally got decent pain relief once they were in my care, and one young gal my age who got her autoimmune workup courtesy of a talk I had with her family member, and I hope she is getting decent treatment now. I’ve had good GP’s at work ask me, why didn’t so-and-so tell her doc these things? And I have to explain that women are naturally allergic to doctors, and they usually feel their pain is not important or not believed when they do complain. Yes, I see a fair amount of drug seekers but I am getting better at looking for the reasons behind pain, and looking for ways to advocate for those that don’t want to complain. Thank you!
Dear Sherry, thank you for the wonderful comments, so honest and clear. Although this whole blog since 2009 has been truth-telling, I believe that this post is another turning point in our movement. I plan to point back here to these comments when we are trying to help providers open their eyes about the way this disease is understood and treated.
We know that the training of rheumatologists contributes in large part to the typical dismissiveness and mis-information about the physical results of the disease itself. But like you said, we know there are also dynamics on the patients’ side that contribute to the lack of understanding and knowledge of our condition.
Good luck at your appointment. I look forward to further input from you. I certainly hope you find a treatment that is effective for you and that the disease does not progress to the rest of your joints. I would hope that you could be a nurse for many more years since you have learned such valuable lessons that being a patient with a chronic painful disease teaches (unfortunately).
I can relate to the part about not appearing “sick” to others because we don’t walk around all day complaining. Well I can relate to everything written! I am blessed right now to have a healthcare situation that is good and compassionate but that has not always been the case.
I get up every morning, wash, and dress, eat, and do everyday things. I have stopped working but did that for almost 30 years–full-time stressful jobs in spite of being told by the doctors that I should either work part-time or not at all. Oh well–I wanted a life that required I worked and I did enjoy much of what I did.
Now that I’m home and almost 60, I find myself being forced to make life changes I never expected. I realize most of what I’m writing and what I want to write does not fit as a response to your post and I apologize–I’ll stop now–but do know I understand all you are experiencing and truly sympathize and root for you.
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I am so grateful for a fabulous GP and a great rheumatology team…
Dr Joanne Homik and the RAPPORT nurses at U of A Hospital. Edmonton AB Canada,and Dr Shola Apantaku, GP Red Deer AB .
I have recently been diagnosed with rheumatoid disease after years of symptoms. I like many of you am “atypical” no visible swelling etc. It is terrifying, to speak what you write out loud; somehow it makes it (RA) too real. I do choose to use some level of denial so that the enemy (RA) knows I will not give up my life so easily. I have been an RN for 34 years and it breaks my heart to hear and experience the callous treatment by some health care professionals as we interact with the health care system. Thank you Kelly for your honesty and courage.