7 Atypical Rheumatoid Arthritis Effects Are Actually Typical
What can we say about atypical Rheumatoid Arthritis? (UPDATED)
Our similarities & differences with Rheumatoid Arthritis are fascinating! I sure wished I had a dollar for every time a patient told me his / her doctor said he / she has atypical Rheumatoid Arthritis! And some actually have quite common symptoms!
Here are 7 things that are often said to be unusual that are actually pretty common. If I missed one that surprised you, you can add it below as a comment. And I know it’s a commercial, but the Cigna ad made me smile. Would you be the astronaut or the royal princess, the knight or the matador?
People say, “My doctor says I have atypical Rheumatoid Arthritis because…”
1) My hands weren’t affected (at least for awhile).
2) I don’t often have obvious swelling.
3) I also have osteoarthritis, osteoporosis, fibromyalgia syndrome, Sjogren’s syndrome, Hashimoto’s disease or another diagnosis.
4) I didn’t know anyone else with Rheumatoid Arthritis when I was diagnosed. I felt alone.
5) Rheumatoid Arthritis medicine doesn’t agree with me. I still have symptoms and I get side effects.
6) The RA has caused non-articular health problems (outside of the joints).
7) My lab tests are normal even though I have symptoms.
Is there an atypical rheumatoid arthritis?
There seem to be 2 issues here. One is easy to solve. There are different experiences with rheumatoid disease, enough that make it hard to nail down exactly what’s typical.
Second, many people, even doctors, seem to have inaccurate ideas about what is typical. Maybe what’s in textbooks is not what’s typical.
Recommended reading on this topic
- Our 1st ever “typical” discussion: Is There a Typical Rheumatoid Arthritis?
- Discussion of “classic RA” What about Classic Rheumatoid Arthritis?
- 805 comments defy typical: What Is the First Symptom of Rheumatoid Arthritis?
- Practical ideas: 20 Tips for Managing Your Rheumatoid Arthritis Treatment
rawarrior Yup! 3,4,5 and 6 are me #NoLightAtTheEndOfTheTunnelYet
I can so relate. My blood work tends to be normal even though my hands are swollen and I have lots of pain/fatigue. I have 1, 2,& 7! I am typically atypical!
My lab tests are always reported as “normal” even though there is constant (every day, every hour) swelling & pain in a few joints.
My left ankle and foot are constantly swollen. I know that I have severe RA in my left foot. My doctor thinks that I have congestive heart failure. Is this unusual??? Patrick
Yes, this is me. I have not been “normal” and it frustrates me. If there is such variation in RAD (formerly known as RA ~ LOL) then why are the Rheumys taught this?! My doc looks at me like I’m fibbin’ when I report my continued symptoms and my labs don’t agree. I sure do like my iPhone cause I can take pictures of swollen hands, and most recently (for the first time, a toe)and show the doc. I first read about keeping a list of symptoms and taking pictures here. I am glad I have kept up that practice. Thanks so much Kelly for this site!
OMGosh,
I have just recently started getting pain in ribcage and spine. I have had lower back pain all along. Just had arthroscopic hip surgery in Jan. Diagnosed with RA and Sjogrens 1 year ago. Took 2 years to diagnose.
The ribcage pain is beyond weird. It always takes me by surprise. I have problems with all joints. Jaw too.
You might want to check out Costochondritis. It is inflammation in the rib cage. I get it every now and then. It is really painful. You can read about it at http://www.mayoclinic.com/health/costochondritis/DS00626
TY ..always nice to have a name to go with yet another symptom..lol I have this to but i didnt know what it was.. Felt like i was haveing a heart attack a few times.. The breathing part is worse if i lay down.. Kim
What about spinal/rib cage involvement. My rheumy is saying that I probably have RA, since prednisone works so well for me, and all my small joints are affected, but that RA “NEVER” attacks the spine and ribcage (while simultaneously, Ankylosing Spondylytis doesn’t affect small joints). He also doesn’t acknowledge swelling to my face when I’m in the office, and will in fact tell me that I have none, but then he says in my medical chart that I do… I’m also seronegative.
I just wish I could meet someone with “typical” RA.
This is me to a “T”. Because I’ve been told I’m atypical it makes it very hard to be resigned to the dx of RA. I google constantly and actually came up with a dx I’m going to discuss with my Rheumatologist next week when I see him. Eosinophilic Fasciitis. Anyone have this? My RA is seroneg with some signs pointing to Scleroderma. I’m currently on Methotrexate and am reporting some subsiding of pain–but my skin is still very tight and my wrists and ankles are swollen and stiff. Just putting this out there in case anyone has thoughts, suggestions. Thanks Kelly for a great site!
Lori what you describes fits me exactly. My first rheumy diagnosed RA and put me on methotrexate.
Then due to insurance I went to see anew one. He thinks I’m making it up!
I still have my paper with the RA diagnosis in writing….
Hi Lori,
I have RA, Scleroderma (CREST), Sjogrens, Raynaud’s, constant back pain, hip pain…good grief. I don’t have obvious skin symptoms (for scleroderma) but I know I can’t be the only one with such a mixed bag! I have a great rheumie in a small town; went to a big-shot in another state, who made me appreciate my doc so much more, as he listens and takes things seriously (and believes me!) it’s nice to have this group, because even with a good doc, I felt so alone before finding Kelly and this group–thank you! To Jami and all those who have dismissive docs: find another one! There is a lot of overlap in autoimmune diseases, and I can’t believe that anyone fits neatly into one category.
Lori, I see that this post was from last year, but, I just found it today.
I have Scleroderma, have had it for 11 years. I also have RA, and while my Rheumatologist, doesn’t find RA in my blood, she says it’s definitely what I have. Guess, there are multiple ways to diagnose this disease.
If your Dr. Suspects Scleroderma, the blood test for that is called the SCL70. I test positive for it every time , and actually, the level has risen substantially over the last year.
Just sharing some information with you. Hope that you are getting answers.
Best wishes.
Just to prove the point, the first and second posters, between them, cover all seven symptoms with no overlap!
These have ALL been true for me. My hands were not affected and I did not have obvious swelling for the first six months after my RA diagnosis.
I also have osteoarthritis, osteoporosis, fibromyalgia syndrome, Sjogren’s syndrome, Hashimoto’s disease AND other diagnoses.
I didn’t know anyone else with Rheumatoid Arthritis when I was diagnosed. I felt alone.
Rheumatoid Arthritis medicine (meloxicam & hydrochloroquine & methotrexate & tramadol) seemed to help somewhat (translation: I learned to cope) with the pain and fatigue, but then I developed nodules and visible synovitis. I tried Humira for 3 months without effect. Leflunomide does not seem to be helping, and we are considering Rituxan next month.
I have lung and heart tests every six months with a pulmonologist because of abnormal test results.
Before swelling was visible, I had a second opinion from another rheumatologist, because I did not feel right. Based on her examination and my normal inflammatory marker lab tests, she agreed with my doctor that my RA was under control. I was resigned that it was as good as it gets, even though I did not feel right.
My biggest gripe is that the pain, stiffness, and fatigue ebbs and flows, but I look close to normal. If I look normal and my lab tests are normal, how will my doctors know I am sick?
Oh yes I to have all these symptoms and the blood work not wanting to validate my complaints.
Lets don’t forget insomnia! (that the pain can cause)
First off, I love that commercial, it always makes me feel better because I know that being unique isn’t a curse! 🙂
Second, my medicines, to date, have brought on a slew of non-ra side effects which is highly aggravating. The more aggravating piece of that puzzle is the inability of my rheum to acknowledge that my medicine may be causing any of these side effects. This, in turn makes me feel like something much more horrible is wrong with me, creating a terrible spiral. Not to mention, did I share that I have ongoing pain? So not desirable.
Third, my blood tests are always normal, I’m only happy that my rheum knows enough to treat me without the elevated blood levels.
Fourth, some day I will just learn to accept that the most abnormal symptom actually just reinforces that I do in fact have RA and not something else. This is a dangerous tightrope we walk when meds, pain, and emotional health don’t always want to walk a straight line with us every day.
Thank you always Kelly for keeping me, and I know thousands more, inspired to keep on fighting. You are a hero.
gentle hugs.
My RA has been “atypical” because I have never been symetrical (thank goodness). Only one knee or one hand etc. has been affected at a time. Also, I never have morning stiffness. I am constantly stiff. It never goes away. I do have pooling in the joints if I sit or lie in one position for a long time but the stiffness never goes away.
Same! Ever since I’ve been diagnosed my rheumy’s always asking how long my morning stiffness lasts for and I’m like what are you talking about! I wake up with terrible pain and stiffness and it lasts allll day. And it tends to get worse as the day goes on, especially in the evenings after dinner.
sounds very familiar!
My first rheumatologist asked that every time and I remember wondering why.
It’s interesting/sad to see that so many victims of this dreadful disease process have to go to such lengths to prove they are symptomatic to their doctor. My case is nearly opposite. I started out with Fibromyalgia, then came osteoarthitis in my spine, and then the RA. I have been so very fortunate that the RA is very slowly progressing. I have even asked my Rheumatologist on several occasions if she is certain of the diagnosis since I am seronegative. She has had to convince me instead of the other way around.
As time marches on, I realize that I can’t remain in denial. The fluid between the first two knuckles on both hands and both feet never goes away anymore. It only gets worse and feverish when used. The morning stiffness lasts up to an hour or more in the mornings instead of 15 minutes. Both knees hurt in the mornings and what’s up with my elbows and ribs? And why don’t these expensive insoles help anymore? Even my awesome boots hurt my feet! Wonder if I should get braces for my wrists. Denial Me thinks, “Those poor souls with RA have big nodules and twisted joints. They don’t have days where they can weed a garden or cook a meal. They are disabled. You’re just lazy! All 55 year olds have aches and pains. Quit complaining!”
I’m still undiagnosed after 2 years although after reading your and many other blogs I’m pretty positive that I have RA. I have number’s 2,3,4 & 7. I’ve been told I may have Parvo virus, Reactive Arthritis, Sero-neg RA, Ankylosing spondylitis, erosive arthritis or I’m in remission. My rheumy doesn’t want to give me any type strong medications because I’m not at risk for damage. I can’t understand how he knows I will never have damage.It’s so frustrating. I find myself constantly wishing for abnormal labs or massive swelling. Anything to get a Dx and get on meds that will help.
Dear R A WArriors
I am and have been a warrior for the past year. I was diagnosed a bit over a year ago. I HAVE A GREAT RHUMATOLOGIST AND AM THANKFUL. i BEGAN HURTING YEARS AGO. FRST MY HANDS, FEET, BACK AND NECK. i KNEW i HAD OSTEOARTHRITIS. When I was sent to my doctor he diagnosed me. I have and am taking plaqunil,prenisone, one injection methatrexate, one shot enbrel, Folic acid, for hair coming out, vit D, pill for my stomach,one multi vit. daily, calcium, fish oil. I have fought against the sickness from the medications and now take zofran for that. I started hurtng as if I was on no meds as in the beginning. My doc has said that I have refractory rhumatoid arthritis. Meaning, the meds stopped working. I now am waiting for pre authoration for infusions.Hurting like mad everyday. For all of the perky letters written out there I say you as blessed. Rarely do I see a letter such as mine wrote. All this to say, arthritis is serious. Do not think of stopping meds. You are doing the best thing you can do for yourself and others. Take your eds and never give up.
Yours truly,
R. Lovelace
I’m atypical as in numbers 2, 3, 6 and 7. Guess I’m lucky that my Rhem finally accepted that I have RA without positive anti-CCP and low positive RF. Ironically I was in an outpatient surgery center last month, and the nurse in pre-op told me she’s fairly sure she has RA but her doctor doesn’t believe her. Pretty sad. Now that surgery is behind me, I’m finally back on MTX and just started Enbrel. Hoping to see improvement!
My doctor’s nurse called me with the results of my recent bloodwork, the message was: “normal for someone with RA.” Really, so what is normal for us?
I was told I was atypical because I don’t have obvious swelling. For me it feels like the swelling is inside the joint, not on the outside. It doesn’t make sense for most, but that is how it feels. The accompanying pain & stiffness, crackling & popping are there. (My cousin has Lupus & we call all the crackling & popping we both have, “rice crispys”). My cousin understands what I mean.
However, I am discovering some deformity in my toes and I don’t understand. I seldom feel pain in my toes, yet they are obviously changing. I had an injury to my great toe & it is still a problem, but why are the rest changing. My gait isn’t different, I haven’t been on my feet a lot, and my shoes are appropriately fitted.
It can certainly be the RA. You don’t have to have pain or inflammation to get damage. Better mention it to your doc. They may want xrays. And even if damage doesn’t show up on xray it doesn’t mean it isn’t there.
I was amazed at your reply because you described that internal feeling in your joints. I do have obvious swelling in joints. Bu not always. In my right wrist is where I have felt that internal swelling feeling. My wrist has only swollen twice separated by a full year. The first time was March 2011 and the second time March 2012. I know the times because of our oldest daughter’s birthday. Both times I ended up with obvious swelling. By “obvious” I mean obvious to me! But for days before I had that feeling INSIDE my wrist. The first time it happened I thought I was nuts and hyper-aware until it just kept on and ended in the swelling I could see. It was the same the second time as well. This quirky, strange thing called RA – that I know I have – yet Rheumy will only call Inflammatory Arthritis! It can make one think they’re nutty the way it comes and goes – the way the fatigue and fevers come and go – and the way all that begins to play on your mind and emotions. Ugh!
I understand the “rice crispys” I’ve described the sound I make when moving the same way. My knees and other joints have done the internal swelling, not a pleasent feeling and it sure does make it stiff.
I speculate the twisting and leaning of my fingers and toes are the tendons being strained as the joint swells. Which ever side of a joint has the largest knot is the direction that the finger/toe leans at that point. I have fingers that try to cross each other because they lean in opposite directions corresponding with the knots. I also notice if a get a bad stabbing pain in a joint even if it is brief, it seems to look worse within the week.
Hi Sheila, I think the internal swelling is often worse than the external swelling after all when it is externally obvious 1. you get to see the cause of pain and 2, there is a place for the swelling to go it is not trapped inside the joint putting even more pressure on that joint. I refer to my ‘rice crispy’ feeling that I need a grease and oil change or some one has over-tightened my joint screws.
I am so over the rheumy docs not understanding us the patients only going on blood work and what they can see. I have been diagnosed for 26 years now I think I know what its like, though years ago I did have one Dr who came from Sri Lanka he used to feel for heat and the strength in my joints, where as now they just say I need physio etc to build up the muscles to support the joints. I would love a Dr that understood and looked beyond the obvious.
Hi everyone, I too adhere to the Seronegative RAD. I am 2, 4, 6, 7. Just recently I have found out that my favorite cousin also has RAD. Plus my mother, and both her sisters have Osteoarthritis. I thought I had been the only one that had the RAD, until just recently of course. If anyone knows of any good roomy docs in the Edmonton/Calgary area in Canada please let me know as I will be moving there within the next month. My RAD isn’t too bad recently, although i’m probably just used to ignoring my pain and fatigue and barreling through life at present as I cant do anything about what I have. No one listens to me if Im hurting or extremely exhausted, or cant do specific things, because they are too heavy or im just in too much pain.For the longest time i actually thought I was pregnant again as my ribs would hurt for days on end and my stomach would move on the inside as if i were being kicked or as if a baby were actually moving inside me. I honestly thought I was losing my mind over that. I get the weirdest aches and pains. Some of them i cannot explain and if i told anyone they would not belive me anyways. Having RAD is frustrating and scarey all at once. I need a new Rheumatologist. One who understands.
No swelling for me, but I don’t swell, period. You could hit me in the shin with a pipe and
I wouldn’t swell or bruise. No diagnosis, either. Need to set up a second opinion with a doc at Dartmouth-Hitchcock. Positive RH, but not sure about anti-CCP – I don’t know how to read the lab result and my rheumatologist can’t be bothered. Aargh.
Tom a 2nd opinion is a great idea. I hope you find a very caring doctor.
Posts like these make me feel better. Thank you, Kelly.
My doc says I am “atypical” because I have never been symmetrical. My blood-work does show RA factor, I was diagnosed 15 years ago when I saw my GP for pain, noisy joints, fatigue and morning stiffness. I was put on hydrochloroquine for the RA, NSAIDS for pain. The improvement was miraculous and I thought I was cured. But, the hydrochloroquine affected my eyes and my ophthalmologist said stop it. Then the NSAIDS blew my already diseased kidneys so I had to stop those. I could barely walk. I was falling a lot. But I continued to exercise and walk. I looked fine on the outside. Doc put me on Methatrexate and FolBee. I feel better, but I am seeing an increase in skin cancers. A lot of my hair fell out. I recently had a DVT. My legs are swelling. I have degenerative knees joints. A Baker Cyst on the left knee and bursa on the right. This disease just hammers at you a piece at a time. #1, 3, 5, 6 for me!
I have had a week of Atypical and here is why…Last week (tuesday) after 8 years of cort. shots, carpul tunnel surgeries on both hands, ulnar nerve anterior submuscular transposition on my right arm (elbow) and ulnar nerve decompression in my left arm (elbow) and my hands arms not responding to all these treatments, a neurologist ordered MRI’s of my neck and arms plus a referral to another specialist. The MRI of my neck has found ground zero of all my arm/hand issues. I have a large tumor in my spinal cord in my neck. It extends from C8 to T1. It has completely filled my internal vertebral cavity at these two vertebra. This tumor also has a possible “tail” extending up to C4. We will not know for sure until the surgeon gets into my spinal cord and sees for sure. It could also be inflammation from the tumor. It is hard to tell from the MRI’s.
I have spent the last week really thinking this all through. I have to have this surgery, due to the fact that this tumor will continue to grow and eventually cut off the use of my hands/arms. I have what my hand surgeon calls severe muscle atrophy in my right hand and I have the “someone is hitting my funny bone with a hammer continuously” in my left arm causing constant pain from my elbow to my arm pit. I am ready for this all to go away! It has been a long 8 year struggle.
According to my Neuro-surgeon, this is “very rare”. He says that he seens one of these cases about every 10+ years. My Neurologist who found the tumor says that she has never found one and that I am the first. I like to be original but…this is a bit to original for me. LOL
I have been researching this issue for a week now. My neuro-surgeon spent 2.5 hours talking to me about it and the specifics of the surgery. (How often does a Neuro-surgeon who is booked out 2+months, spend 2.5 hours talking to a patient? I was very impressed by this.) I am one of those people who wants to know everything about it. I find it facinating really. I now know exactly how he is going to perform the surgery and remove the tumor by going into the back of my neck, slicing the spinal cord opened and extracting the tumor small pieces at a time to minimize the risk of damaging my spinal cord. I have discussed recovery time and requirements. I feel more comfortable the more I know. It is a way for me to get my mind around the task at hand.
I have had 4 surgeries on both hands and elbows in the last 14 months. These have all been to help me…to correct the issues I have going on in my hands and arms. It has not helped that I also have rheumatoid arthritis, which has slowed my diagnosis process, as I have thought for the logest time, that these symptoms were just my RA. Doctors are not gods. The do the very best they can. I like my primary MD, my rheumatoiogist, my neurologist and my hand/arm surgeon. They can only diagnos the symtoms that I have and start with the most common diagnosis first and then work from there. I don’t blame them for not finding this sooner. It was just circumstances.
It is amazing that I would read you post on atypical RA symtoms. I have been dealing with symptoms that have turned into a very atypical cause that for years have been showing up as very typical RA symptoms. Imagine that! Who know?
I want to say thank you for all your tireless efforts and posts. We may not always comment, but we are here. We are learning, finding comfort and growing. I can never thank you enough!
2, 3, 6 and 7. I have had swelling in my hands and knees a few times, but nothing that anyone else would have noticed unless they had a photo of these joints from another time. Have had two lab tests come back showing slightly elevated but in general they show that I am fine. Thankfully my RD doesn’t pay attention to that.
today was a heartbreaking day for me and it was so nice to come here and read these articles. I was diagnosed a year ago with RA and started methotrexate immediately. It made me so ill with horrible migraines, I eventually had to stopp treatment. during this time, I had to find a new rheum dr and when I met with her today She looked at me like I was crazy. She said to me “you don’t have real RA cause your fingers aren’t swollen enough”. I went through all of the testing, it’s positive with a high anti-ccp but she told me I should just take some vitamin D to help with joint pain. I am devastated. I have severe morning stiffness, horrible joint pain (bilaterally) and a strong maternal family history of RA. I have met all of the criterea for RA according to my prior dr, but she still refuses to diagnosis me or provide any meds. Has anyone else met a Rheum Dr. like this? what am I to do.
Jamie -If possible see another Rheumatologist. I was told by a podiatrist (as my feet were my first affected area) that it was RA. The first Rheumy said: “I’ve seen worse; come see me in a year if you still hurt”! This to a 28 year-old competitive athlete who could not longer navigate stairs. I booked with the other Rheumy in town and he said: “We’re going to get this under control – we have a lot of options”. Needless to say, I’m still seeing him 25 years later and he’s always on top of the latest.
2, 4, 5, and 7 for me. I’m one of the (few?) lucky ones with a fantastic rheumy. A couple of visits ago, she said to me, “sometimes you have to treat the patient and not the numbers.” My labs, all of them, have always been completely normal. Same for my x-rays and MRIs. But RAD is just like people in general… there’s really no such thing as “normal.” That’s what makes it so hard to diagnose and treat. It’s also what makes us warriors.
I’ve never been typical. I’ve NEVER been symetrical. I don’t get morning stiffness; I actually tend to get stiffer the more I move. I was one of the “lucky” as I figure things. My pcp was inclined to look at me as if I was faking until I turned up a high RH bloodwork. He immediately prescribed MTX and set me up with a decent Rheum. Regardless of what my bloodwork says, they both believe me when I tell them I’m having flares and my rheum adjusts my meds to try and compensate. With a heavy maternal family history of RA and a heavy paternal history of OA; I’m just waiting for the first joint replacement.
Thanks for posting Kathryn – it’s good to have our differences to compare. We did a poll on stiffness recently and it looks like a large number of patients are like you and me – more stiff & painful the more we move. So glad your docs trust you now. It’s devastating for patients when the doctors think they’re “faking” RA symptoms that need to be treated.
Ok I think I am really weird because I have very high rheumatoid factor but after 9 years with the disease still don’t have what are considered typical symptoms. My mother had RA and her symptoms were completely different then mine she had a lot of joint deterioration whereas my worst symptoms are my Back and hip pain. She had no back or hip problems. I have bursitis and tendinitis all over the place also but very little joint problems. I have had symptoms in my hands but it has always been tendenitis rather then swollen joints. For a long thine I didn’t take my problems seriously. Because I expected RA to be what my mother experienced. I also wish someone had told me about the other things the dry mouth, gum disease, excessive cavities ans constant sinus issues.
So I go to the doctor today. He says, “Your RA is controlled because your tests are all normal this time.”
So how come I don’t feel any different????????
Sorry, Jane. I’ve heard this thousands of times. You’ve summed up our plight in a nutshell. There is of course no blood test to confirm or deny disease activity w/ RA yet.
What did he say when you told him about your symptoms?
He said, “I see your RA is controlled” after we went over the blood tests. He then asked how I was feeling and I said not good but oh well…..I didn’t push it because I’m feeling …I don’t know what I’m feeling. And the blood tests are so weird. Just last month when I had them done lots of inflamation showed up in the blood, the RA factor was very high, etc — and this month, nothing. I don’t think I feel any better — but then I start to second-guess myself. Is it all in my head? I know it isn’t but….
Of course it’s not in your head! I’m so sorry you’re going through this. It’s the whole reason we created the Rheumatoid Patient Foundation – to help improve care by educating about what really happens with the disease. I don’t know if it makes you feel better to know this is typical. He needs to know that the blood tests don’t always track w/ disease activity & that’s well documented in RA. It would be so easy if it did and we could just take a blood sample like with diabetes, but the science just isn’t there yet. Not sure which blood test he’s relying on, but if there were a test that told us that, we’d all know about it.
Hopefully you’ll get a chance to ask him, “When you say my RA is controlled, what does that mean? Why do you think so?”
I suspect he’s relying on a CRP or sed rate test which have “normal” results in many cases even while damaging inflammation is occurring w/ RA. Here’s a link to some articles about CRP here on the site: https://www.rawarrior.com/tag/crp/ I wonder if you printed one of the original studies that I quoted in one of the articles, whether he’d look at it.
A personal “atypical symptom” that’s beeing occuring for me lately is the sudden onset of swelling in a joint during the day. I know we all have sudden swelling but when I say sudden, I mean sudden. Like for instance: it was around lunch time, I was sitting on the couch when I notice the middle joint on my thumb (which had been feeling fine) felt rather stiff. And it just got stiffer and stiffer and in less than an hour the joint was double it’s normal size! I took a picture as proof and asked my rheumy if this was normal. She just kind of looked at me funny and said “No, usually people just wake up with the swelling and sore joints, that’s why we ask about morning stiffness.”
My rheumatologist didn’t believe I had RA since my blood work wasn’t indicative for a long time. He kept mentioning depression. It wasn’t until I started bringing him pictures that he started to believe me. When I finally tested positive I just cried and cried, relieved that he finally believed me.
I have RA. The meds I was given Paluquine and Methrotaxate help somewhat. But still stiffness to the point of not being able to walk, if my knees are attacked, to unable to open a can of pop or even ,lift a cup or my remore control. My Specialist doc says dont use prednisone as it is very bad for you. But…it works. When a flare up happens I am in terrible pains for a couple of days to the point that it makes me sick. If a flare up happens and I take prednisone, I can actually live! I have told my doc that the pain is extreemly severe and bad and he put me on morphine pills. That helps somewhat but the pain is still there after taking 3 10mg morphine pils twice to three times a day. And that stuff makes me woozy, unable to drive or ride my bike. I have come to the conclusion that both, specialist and doc, as much as I like them, have no idea how bad the pain is. And when I talk to them about it there is not much they can do. So they say. I actually dont care if I am asymptom or whatever. I need to get rid of the pain with the flare ups. So back to the specialist hoping he can do something. I am also taking vitamin D and folic acid.
I take pictures of my joints with my iphone too! It lets me keep a running tab on the various joints that are swollen and red. I found that if I have the HDR setting on, the photos are a little more realistic.
Oh seriously! If I have to listen to my doctor say, ” RA doesn’t manifest itself in the spine!” I’m going to puke. My spine and back are so painful.
I “think” I have a good RA doc. Sometimes I wonder. She tells me that there is nothing “typical” when it comes to RA and that no two patients are exactly alike. One thing I wish is that my primary care doctor would get up to date on RA. She can’t figure it out when my sed rate is “normal”. Unfortunatly, because of my insurance I have to have everything go through her. But then again, I’m grateful that I have insurance.
sounds like it would be a big help to increase awareness among health professionals about how the disease behaves in the real world. Unfortunately the medical books really need updating so even caring doctors & nurses just don’t know.
I have some of those, but my rheum doesn’t call me ‘atypical’. No, he prefers to ignore those things that fall outside his 100 yrs of medical practice. It’s my body…or worse yet, it’s my imagination, that’s wrong.
Another thing I find is doctors (3 to be exact) desperately wanting to diagnose me with Fibro. They haven’t, but they talk about it a lot. And I had fibro symptoms from Nov 2011- April 2012…at least what the rheum was again desperately trying to hang it on. Funny how those symptoms only existed while I was on Arava and completely vanished a week after I stopped taking it.Oh, but according to my rheum I just didn’t know, while taking Arava, just how good I really felt.
I don’t have obvious swelling in a regular basis.
My joint count has doubled in the 18 months since I was first screened.
I am seronegative. The only test so far to show anything is a constantly elevated CRP.
A month after I had my first Rheumy appt I was flaring and she ordered an MRI. It took a week and a half to get scheduled and it still showed deep synovitis in my left wrist.
In January I developed Costochondritis and it is spreading.
My current Rheumy says she doesn’t know exactly what I have so my treatment options are limited. Yet according to the ACR updated guidelines, I have Seronegative RA.
So I am scheduled to see my fourth opinion the week after Thanksgiving.
Thank you Kelly for being an advocate for patients like myself.
% years ago I woke up with every joint from my toe knuckles to my jaw bones totally aching. Diagnosis = RA. After 5 years on Enbrel I have no pain (but I know it’s lurking somewhere However I now have 3 joint replacements – both knees and 1 shoulder. Now I still have the fatigue as well as some new developments; itchy and dry eyes, Sojgren’s? Also recently cold hands and feet, very cold!! Raynaud’s disease?? I have read that this is a high possibility. Anyone have info???
I’ve heard those things are associated with RA, as well as with scleroderma. I have both dx, and struggle with Sjogren’s and Raynaud’s. Fatigue seems to go with all autoimmune diseases. I think Rheumatoid Disease is a good description, as there is so much overlap between RA, scleroderma, and lupus.
I’ve been trying to stick to a “paleo” diet, avoiding grains, legumes, and sugar–all inflammatory foods. Had been feeling better, but am flaring again now after being sick for 2 weeks. It’s such a roller-coaster ride!
Is anyone experiencing peripheral neuropathy due to rheumatoid disease? All of my blood work has come back normal to screen for any vitamin dificiencies. Had to do a 24 urine collection test. No word yet on those results. I also have carpal tunnel in both wrists-my left hand is worse-I’m right handed!! I was diagnosed in 2010.
Thanks,
Paula
Paula, I think this is rather common because it’s something patients mention often. Maybe I can ask about it in a post – I’ll try to do that soon.
Thanks for making me feel that I am not alone. Are there really any doctors out their that truly understand this disease. My rheumy goes through the motions of looking at my hands, feet (since I take off my shoes to show her my swollen, not always, feet) and unless I ask questions has nothing to say to me other than see you in 3 months! Simply frustrating, and she is billed as THE BEST!
I am a regular to this sight. Excellent material.
loved the article, its all so true!!!!!!!!!!!!!
I’ve been hurting swelling waiting for a diagnosis for over a year. A few months back I was so excited, I’d found a Dr. that listened, she said I have RA and possibly Sclerederma, tests were slow in coming due to lack of insurance and income. She said she was sure of RA,according to my symptoms and joint exam, put me on MTX, prednisone for a while and now CIMZIA and MTX. I am getting some relief. Well I finally saved enough cash to do the “tests”, last week I went to the Rhuemy, this time she said “most of your labs were normal except one ANTI-body which is unusually high, I do not think it is RA, but we will continue the treatment, changing the MTX to weekly injections” HEY DOC, WHAT ARE WE TREATING, IF I’M NORMAL??? HOW IS THIS NORMAL??? I CAN’T STOOP, HARDLY TIE MY SHOES,SLEEP, OPEN ANYTHING ETC…….? MY PAST NORMAL WAS SWIMMING, HIKING,HAVING A HORSE STABLE, GARDENING,AND EVEN TYING MY OWN SHOES. I think I’m losing my mind along with my joints.
My husband was diagnosed 4-5 years ago and has never been ‘typical’..it’s so hard for those of us who don’t have RAD to understand which is why I try to always read your articles! His last MRI didn’t show any ‘hot spots’ so his Rheumy thinks his RA is under control even though he still hurts in certain joints and fatigues easily. His blood work always shows nothing out of the ordinary too so he often says to me ‘it must be in my head’. I know it’s not because I can see he is physically in pain. Is there a part of RAD that occurs without having hot spots on an MRI? I wish I could make this awful disease go away!
We can go to Mars & beyond, yet we can’t get into our own bodies to understand the cause & find cures. Meds are better than nothing, however expensive & bad side effects. Am meeting too many people with R.A. or autoimmune diseases in the general public. It is on the rise. Why? Pollution? Overpopulation? Our natural ecosystem has been messed up? B. Fragilis a common gut bacteria can also control T cells & inflammation. 70% of our immune system is actually in our guts. Hard to get good medical care too, not enough Dr.’s or Rheummy’s, they are all rushed, thinking more about insurance & payments than the patient. Would love to find a Rheummy that would really take a interest & listen. What could have caused the R.A., ask the patient if they have any ideas. They would know their life situation better than you. Do any Dr.’s even really take the time to get to know their patients? Have my doubts. Seems like they don’t have the time, don’t want to get that involved. They seem to be answering to HMO’s, Medicare, Insurance or drug companies more. Have often wondered what bonuses were offered for cost effectiveness, or using certain meds & so forth. Why do we patients have to push so hard for treatment?
When I have asked “the experts” ? about my symptoms the answer is “we don’t know”. Even simple things like o.k. if some of the swelling is water retention, what is causing it? Why do my ankles get bruised after swelling? Why do I get these reddish dots or blotches on my feet? Are capillaries & veins being affected? It feels like muscles, tendons, tissues outside the joints are being effected too.What causes bone overgrowth? Why don’t I have a R.A. factor? I had one Dr. that did test for a gene that has been associated with it, however many with that same gene do not get it. What sets it off? Why is it mostly females get this? What viruses could I have in my system? Bacteria that is bad, or bacteria that is good that I am lacking? Wish I was a Dr., then I could order my own tests, instead of asking & asking & sometimes being ignored by a too busy, rushed, or cost effective? Dr. Somehow poor treatment has never equaled cost effective to me.
If I didn’t have young children, I think I would just give up from the constant fatigue and brain fog and pain. Now my muscles are weak and painful all over. As if I ran a 5K. I now have muscle pain in my right upper arm that keeps me from moving it well. There are knots that you can feel through out the deltoid muscle where all the pain is. If I walk to exercise, my hips hurt so bad for days and all I want to do is sleep. Methotrexate helps some… I really don’t know where to go from here. Today at work I couldn’t say words correctly or form proper sentences. It was like word salad. At one point today I thought maybe I had a TIA. Praying my speech is back to normal tomorrow after a good rest. Thank you your website.
When I was first diagnosed, the rheumatologist in the city I was living in said “your lab results are a slam dunk for an RA diagnosis”. I’m both CCP and RF positive with erosions and swelling evident on two ultrasounds of hands and feet.
My symptoms are not well managed at all. The medications haven’t been that effective. I’ve had reactions to medications and infections that interrupt taking the DMARDS. One Biologic was deemed ineffective.
With all this evidence, you’d think we could move beyond – “Does she or doesn’t she have RA?”
For the past 10 months in my new location, I’ve been spinning my wheels. The written reports by rheumatologists here read like mud – nothing is clearly stated and treatment recommendations are all over the map. I do have a viable option to see a rheumatologist in another city, which is complicated.
Yesterday, I saw a new rheumatologist locally who has several specialties. I waited several months for the appointment. An hour into our discussion (after waiting an hour to see him), he informs me that he specializes with AS not RA. The “interview” felt more like an interrogation then a case history. All was not lost but then again, more navigating through muddy waters. As he was dictating his report to my primary, he says that the diagnosis of RA is not conclusive in my case because of these “atypical” findings:
1. She is not responding to the medications as we would expect
2. Her CRP and ESR are normal (despite our discussion of the research evidence that CRP and ESR are normal in a large percentage of people with RA)
3. Her symptoms are not symmetrical and there’s not a lot of swelling (despite evidence on two ultrasounds)
4. She is worse then we’d expect so it might be something much more serious
In our discussion prior to his dictating the report, he said my case is likely advanced because of the presence of erosions. Talk about INCONSISTENT !!
He ordered more blood tests including a repeat of the CCP (despite research showing this lab value doesn’t change much) and x-rays (despite research indicating that MRI and ultrasound are far superior to plain radiographs). There are some follow-up treatment plans but I have to question- WHEN IS ENOUGH ENOUGH ? What does it take to just get a simple diagnosis and reasonable treatment plan?
It’s so clear that the field of rheumatology requires a complete over-haul !!!! There is such an urgent need for better treatment that should, at minimum, be consistent with the little research that exists.
I’ve recently been thinking about the fact that RA most often strikes women in mid-life. I can’t help but ponder that if this were a disease that hit men to this degree, the treatment and research $$ might be a whole lot better. What value do mid-life women have to society? I guess it’s no big deal that many of us can’t function well any longer, lose careers, lose social contacts, become disabled, and die younger then the general population. Hmmm…. !!
For the record; I’m a 3,4,5,6 &7. I am so much better than when I was first diagnosed 2 1/2 years ago. I went outside of my health insurance to get the diagnosis, so when I went on biologic meds I had to go through the insurance docs to get the meds. I am so frustrated I think I could easily just go crazy. I cannot walk more than one small block without my feet swelling up and hurting so bad that crawling seems like a reasonable way to get around. Two Ruemy’s have told me I do not have RA in my feet. I have it everywhere except my feet. I also have these lovely growing bunions, with newly slanting toes.
When I went for the second opinion, and when I showed her my feet, she looked at me with amusement, and told me that bunions are inherited! My jaw nearly fell off.
So now I have electronic medical records with notes saying that because I am sero-negative that I am at low risk for deformities and all my blood tests are perfectly normal. I also have new bones sticking out of both thumbs.
I am getting lots of meds, Orencia, Arava, non-steroid anti-inflammatory, anti-depressant, tramodol. Could be they are just as frustrated as I am, as these meds are not working as well as we both would like. Twilight Zone.
6 and 7 and a bit of 2.
Blood tests are all completely normal, which were the reasons why my ped. gp refused to diagnose me. (Diagnosed now after 10 yearsish) and I’ve possibly developed pleurisy (rheumy doesn’t know for sure if I have a pleurisy spot or just some scar tissue from pneumonia when I was a baby).
As for #2, my fingers swell up at the slightest provocation but knees and ankles sometimes have to be so painful that I would willingly cut them off with a rusty spoon in order to show some inflammation and pretty much nothing else swells.