Hysterical Symptom Diagnosis, Part 2
Rheumatoid Arthritis diagnosis with a literally hysterical symptom
We all know diagnosis of rheumatoid arthritis can be complicated. Many of you have told of the months or years you suffered from Rheumatoid Arthritis without a diagnosis. The stories include trips to various doctors who either gave a misdiagnosis or an under-diagnosis. Unfortunately, there are also those who felt humiliated enough to give up and suffer silently. Often, they received what I call the “hysterical diagnosis.” Although I laugh about it with you today, I actually received that hysterical symptom diagnosis several times, so I understand the anguish of it.
Out of hundreds of hysterical diagnosis stories that I’ve heard, the most hysterical of all is the story of Kim, a fellow RA blogger. Most of her story is typical.
Hint: read Part One of the hysterical diagnosis problem to learn the connection with the word “uterus.”
Young woman gets Rheumatoid Arthritis symptoms. Symptoms don’t match ACR standards. X-rays still normal. Lab work normal. Symptoms are viewed suspiciously. Doctor views young woman as whiner. Young woman is sent home with either no treatment or inappropriate treatment.
End of story hysterical symptom story
…for the doctor, that is. For the woman, it is only the end of a chapter. She still lives with pain and disability. When she works up enough courage, the woman seeks another opinion.
Kim went through this process with at least 4 drugs and 3 doctors. When it became clear to Kim that she had Rheumatoid Arthritis, it was still not clear to her rheumatologist. However, according to the ultrasound results, it should have been.
The fourth doctor did diagnose and treat Kim for Rheumatoid Arthritis. And in the process of changing doctors, Kim looked at her previous doctors’ notes. What she read was unbelievable.
The rheumatologist had diagnosed Kim with dysmenorrhea – uterine pain. That’s Latin for menstrual cramps. The doctor actually blamed Kim’s uterus for her Rheumatoid Arthritis symptoms.
But wait, it gets better.
Rheumatoid Arthritis is often triggered by trauma. This includes car accidents, childbirth, family death, or major surgery. For Kim it had been a hysterectomy.
That’s right. She did not even have a uterus to blame.
And that proves my point that a diagnosis of a hysterical symptom does not require an actual uterus these days. Theoretically, even a man could be given the hysterical diagnosis. But it is more rare.
The hysterical diagnosis can occur wherever there is “invisible illness.” It does not require a uterus. It only requires arrogance.
Stay tuned to Rheumatoid Arthritis Warrior for our next report on peeking at what’s in those doctors’ notes!
Recommended reading:
- Kim’s story as she tells it on her own blog called RA Sucks
- What Makes Diagnosing Rheumatoid Arthritis So Difficult?
- Is There a Typical Rheumatoid Arthritis
I think also that there are so many types of RA, OA, etc it’s hard to pinpoint what is what. Every doctor seems to have different approach, which is really nerve racking to patients. I stopped going to a Rheumatoid MD, instead go to pain doctor and bone guy.
Thank you so much for posting this. I am in the process of trying to get a diagnosis and have already been to two doctors, both of whom basically treated me like I was crazy. It is so hard to be told that there is nothing wrong and still have to suffer in pain. Why do doctors often treat young women this way?
Anyway, I am going to a third one in October, so I have my fingers crossed. This article definitely made me feel a little more hopeful. Thanks.
I blogged about this during invisible illness week. With the many years of misdiagnosis, I was told it was all in my head and was told anti-anxiety meds. Those years were interesting.
I went through a similar situation and though I did not get to read all of the doctors’ notes, the few I read were upsetting enough. The first rheumatologist I went to said I had ehlers-danlos and there was nothing I could do about it and I should stop whining (not in so many words but it was pretty clear). It was over a year before I saw another rheumatologist who diagnosed me with RA. His comment was that it should have been pretty obvious I had RA as my symptoms were, “classic.” I wish I hadn’t had those years of thinking the pain was all in my head and wondering if I really was just lazy and stupid. It is hard not to let those voices go, but there was always a part of me that knew something wasn’t right, no matter how crazy I might feel knowing another Doctor was throwing more useless pills at me that would have no effect or just telling me I had to live with it. RA certainly teaches you many things….I am more patient, stronger, determined, and confident than I was 3 years ago mostly because of those experiences.
All I can think to say is that this is the best RA blog/info/community I’ve ever been a part of. I’ve been on yahoo groups and websites, but this place has it all.
What an incredible place you’ve made for us “experienced” RA’ers and equally good for the “newbies”.
At the beginning of my journey, I am hoping its not RA but preparing that it probably is, thank you for the posted information, I do not feel so silly and hysterical .
I have had swelling in my hands off and on for the last several years, gave up doing massage therapy it seemed to
help. Last Summer I lost my big toenail, then it tried to
come back three times now, non issue thinking its a fungus, but the skin and nail bed are good color.
Got sick with a sinus infection 6 weeks ago and 4 rounds of anti biotics, (I have sever gastritis symptoms) and am so fatigued I cant stand it, my muscles are completely week.
My mother and fathers sister both have RA so ask my DR to give me to test me for -> Rheumatoid Arthritis (RA) Factor
Rheumatoid Factor (RA)
-> Sed Rate
Sed Rate
-> Anti-CCP
Anti-CCP
-> ANA
ANA
she said well we will have to talk about it and I am not sure if I will order them just because you want them….
FYI anyone anywhere can order anything via the internet. Glad to live in the information age… Results Tuesday….
Thanks for this site.
FYI RA can be masked as psudogout, found the info online.
What kind of comment is that: “just because you want them”? 😕
Hope it’s not RA, but best of luck, Melissa.
So I got my RA latex turbid back its 11.9 within range
ANA- Negative
ccp is 6
sedrate 3
I dont have a dr appoint for three more weeks, and am trying to understand how the ccp test goes, I read that anything over a 5 is on the way to RA however some people test positive on the ccp and dont have RA,
My head and neck base of skull and jaw, are pretty much at level 2-7 pain all day including when I sleep.
I found old blood work from 2003 that shows my Sed rate at 23, when I had many problems with my hand swelling so bad, and that eventually want away and worked it way to my neck. Can the sed rate change for 23 to 3 over the years and isnt that good?
Wow, Melissa. This is much more info about labs than most patients ever have.
Bring in that old lab when you see the doc. Do you have any photos of the swelling? Swelling is not neccesary w/ RA, but some doctors get hung up on it.
The sed rate can change quickly. It is not a specific RA indicator – only a general inflammation indicator. Plenty of RA patients have normal sed rate every time it’s tested – with lots of damage. More below.
So I have just read this any thoughts anyone
hat does the test result mean?
As a rule, test results outside the context of clinical signs and symptoms cannot be judged. Nonetheless, when patients are positive for both CCP and RF, it is very likely that they have RA and it is likely that they may develop a more severe form of the disease. When patients are positive for CCP but not RF and clinical signs suggest RA, then it is likely that they have early RA or that they will develop RA in the future.
When patients are negative for CCP but have a positive RF, then the clinical signs and symptoms are more vital in determining whether they have RA or some other inflammatory condition. When patients are negative for both CCP and RF, then it is less likely that they have RA. It must be emphasized, however, that RA is a clinical diagnosis and may be made in the absence of positive autoantibodies.
So I am positive for both
regardless off the number, says to me pre RA, booking an earlier appt with DR
Okay, I can agree with most of this. I was reading about some new studies in “very early” RA diagnosis & treatment. Maybe you will want to Google search with those words.
The reason that clinical signs are more important with a negative CCP & pos. Rf is that there are other things that can cause the Rf. CCP is pretty specific, but Rf less. There are still almost 1/3 of diagnosed RA patients who are negative for some combo of these tests. That’s discussed in the Blood test posts.
Have you already read the 2-part series on blood tests here? Also, on the top menu, there is a page called Do I have RA. Maybe you can find some links there that will help.
Thanks for the article on 2part blood tests,
I have been going through my ins, trying to book
an appointment with a Rheumatologist , The one I wanted
a referral is needed from a internist (is that right? anyway)
from the same clinic. So I think I found one who is both, I am calling tomorrow to see when I can get in. I am sure I have at least a couple of photos of my hands so bad, I remember cutting my hands out of the pics with me and my 6 month old because they looked so bright red and ugly.
I have a couple of silly questions, I feel so fatigued and weak physically , and emotionally I feel silly and don’t want to complain, I am sick of hearing myself tell my husband who is working out of town every night just how miserable I feel. What does a person do between now and treatment for pain and for fatigue? I am on ketaprophin and taking Tylenol. I have a 3year old and miss my old energy, in the last 7 weeks I have forgotten how I felt when
I had just my regular headache and hand swelling.;-( I think if I heard my story and not lived it I would think man shes a big baby.
Kelly this post really touched a chord for me. My symptoms first started appearing after the birth of our fourth daughter. Before this I had the occasional strep throat or dental issue but for the most part I was pretty healthy.
The first the symptoms seemed like many random things. Skin rashes, sores inside my nose, hot flashes, and a tiredness that I had never experienced before. I kept making appointments with my PCP, which was very unlike me. I avoid the doctor. In all the years that they were my doctor I never had so many appointments with them as I did after our little girl was born. Usually they had to drag me in even for a checkup!
I had chest/heart pains and they sent me to a cardiologist. Nothing wrong with you heart, they told me. My voice was hoarse all the time, and I had a constant sore throat. I thought maybe I have esophageal cancer? I was sent to the ear nose and throat doctor. He said it was acid refulx. “My collarbones ache!” I told my PCP. “I have Phantom sensations up and down my spine”
My PCP ordered blood work and when explaining the results she overlooked or just didn’t tell me about the positive RA factor. Maybe you have Post Partum she said, I’m giving you some anti-depressants.”
6 months later I am at the point of incapacitation. Every night you would find my crying in bed all night. No amount of Tylenol or Advil touched the pain. I could not function or do any of my normal chores. I was in school at the time. I could barely sit in the desk during my night classes, it hurt so much. My kids could not sit on my lap or lean on me. I had to sit with my legs straight out in front of me.
While picking up my kids from school I heard a commercial on the radio about lupus. A light went off, that sounds like me I thought. When my husband came home from work I told him about it. I explained that I was afraid my PCP was getting sick of seeing me and was tired of me coming in there. “I don’t think she believes me” I told him.
My husband said “You need to get a second opinion.”
I saw another Dr. in our PCP’s practice and told her about a commercial I heard on the radio about Lupus. I think I have Lupus I told her. She was going over my old blood work as I was talking to her. She looked at me and told me that I had a positive RA factor and that she was referring me to a rheumatologist. She explained that this rheumy was the best and there would be a wait to get in. But that she would be able to tell me if it was RA or Lupus.
There was a longer wait than usual because somehow my paperwork was misplaced or not sent? I ended up waiting another four months to be seen. But thank God for my Rhuemy. I have a diagnosis of RA. I just cried with relief to finally have someone understand. She is the best.
All the time that led up to my diagnosis I spent trying to figure out what was out of whack in my life. I wasted precious energy. Since my PCP seemed to think it was all in my head I didn’t feel like I had permission to be in pain, complain, or talk about the pain. I trusted my Dr., and believed her. It must be all in my head. But then why couldn’t I do the things I used to do no matter how hard I tried? I was cranky and short with everyone! My neighbors don’t even talk to me anymore
Was it the atmosphere at the kids school or mine? I changed my kids schools, I sped up my graduation process by loading up on classes. My husband and I argued a lot (was it our relationship that had problems I wondered?). Was it the fact that I had just quit a 17 year smoking habit? Was it hormones, early menopause? I kept trying to make myself feel better. I bought fuzzy blankets and wrapped up in them, looked for soft socks to buy, and comfy clothes.
In the end none of those things helped. Plaquenil did though.
I was sitting on the porch yesterday, with my dear friend who was with me through all of this. And I told her this:
When you are sick, don’t ever listen to a doctor who says “it’s all in your head”. Ever. It was one of the worst things that ever happened to me, all that time thinking I was losing my mind. I wouldn’t wish that on anyone, not even my worst enemy.
Thank you for telling us what you went through to get a diagnosis, Ruby! :heart: Maybe someone reading will be encouraged to find help & not give up. Have you looked at the onset stories much? It seems like too many people have been through this. And I agree with what you told your friend – good advice.
Thank you Kelly, I hope so. And I haven’t looked at the onset section yet but I am going to check it out, thanks.
Thank you, Ruby. I totally understand what you were going through, what with the self-doubt and the questioning of all activities. My heart goes out to you.
Thank you so much. Aren’t we lucky to have this site and be able talk to each other about this 🙂 It’s nice to have a place where you are understood!
Here is my long tale…During and Ice storm in 1998 (the same year I was dx with RA) I fell and hurt my leg and cannot walk. I go to ER with husband in wheel chair. Had x-rays they told me I did not break my leg but got crutches. After 6 weeks, I still could not bear weight and my regular MD was unfazed and told me to wait and calm down but finally I went to an Ortho doc who looked at my original xrays…and said oh look there is a fracture right there…I was stunned…then after 6-8 weeks in a brace…I still could not walk right and finally had a MRI which was never done…and found that a huge chunk of my knee cartilage was missing…I finally had Arthroscopic surgery. Over 3 months of suffering…and having Dr’s give you that “LOOK” when you complain…I finally had found out what was wrong… Fast forward a few years…My knee is still giving me a hard time..walking etc. New Ortho Doc #2 Had an MRI and he told me “oh you are not anywhere near having a knee replacement…(which by the way had never been suggested nor did I ask for one) and he sent me away with no solutions…and he said he would give me a shot if I wanted to go mountain climbing…when I had just told him I had trouble climbing stairs…Then several years later another ortho Doc #3…said the same thing to me after another MRI…Meanwhile I am losing function and I am so stiff I am afraid of falling. Then I get real brave and visti Ortho Doc #4 thinks I have a torn meniscus…and notes the missing cartilage..and sends me to Ortho Doc #5 who does Cartilage transplant surgery…well I get to Ortho Doc #5 and he said that I was in no WAY a candidate for cartilage transplantation…after all I have RA…(it was quite clear with Ortho Doc #4 that I had RA) Now on to Ortho Doc #6 to consult for Total knee replacement…so I finally at the end of the line…I have had it with Docs to don’t listen or hear your complaints…
Thanks for sharing, Susan. Isn’t it hard we have to go on and on like that looking for a good doc on top of the pain of the knee itself & the treatments…? Only choice we have I guess. “Gird up our loins” & spend more $$ and go again. Did you read part 1? I think it mentions my friend w/her broken hip & “normal” Xray?
@Kelly…I did read Part One…it was an amazing story…the sad thing is, that I believe stories like that are more common than we would like to believe…You want to be trusting of your doctors…but the sad thing is that you just can’t…and that is very scary…But this new group of Ortho Doc’s that I am going to I think are going to be fantastic…they are the cutting edge and very skilled and have a stellar reputation…so maybe just maybe I can put my faith into one more Doc…
I had Surgery on Monday & this has been a week of hell. I had breast reconstruction surgery, after my year of dealing with breast cancer & chemo. I am still not feeling right. I was diagnosed with RA when I was 5 years old. I am now 60. My RA has been flairing, since the chemo treatments, but after the reconstruction surgery, which was day surgery. My RA is “off the charts.” I do not think most surgeons are aware of how RA can Flare after surgery & do not know how to handle it.. It should be made as a mandatory course in medical school.
No, you are right & this is a serious issue. Especially if the patient has spine affected or larynx. Do they give you prednisone? Or can you have that post op?
My symptoms began at about 6 months old, they told my Mum I had colic (for 18 months), my mother was overanxious and when my younger brother was born I was jealous! Thank God that my Mother heard about RA and thought ‘that’s it!’. My Dad found a work friend whose Son had been diagnosed with RA and they gave us the name of the Paediatric Rheumatologist that diagnosed him. All the GP said to my Mum was ‘sorry’. He only recently retired from our surgery and was extremely careful with me after that but I never forgave him for the way he made my mother feel.
Incredible. It seems that so many people with rheumatic disease have these war stories. And it is amazing how painful it is to feel disrespected and misunderstood, to have their physical reality denied. It’s happened to me, too (axial spondyloarthropathy, AS). It’s good to know one is not alone.
Thank you for sharing… I’ve been to emerg so many times for pain. Feel like the doctors all think I’m insane. I get told it’s in my head a lot. Even with partial diagnoses and a rheumatologist kinda on my side. I’m not presenting in normal fashion and my blood work is always perfect..except for a ever dropping platelet count and a mild positive rf. All my imaging and tests are always clear but I have lots of joints involved with pain and swelling; hands, feet, knees, wrists, ankles, shoulders and ribs. I have trouble with breathing, my digestion , bladder, had a hystorectomy and now getting heart palps. I’m 31 and feel 81. See now there’s some whining for ya! Who knows what I’ll end up diagnosed with.. new rheumatologist this week for a 2nd opinion. Thanks again for sharing, it was encouraging to read.
My Rheumatologist was treating me for 8 years with Methotrexate and Plaquinil but he didn’t believe I actually had RA. That was evidenced last August when I had the mother of all flares, and he tested my blood. When I got the results, he smiled and said “You have RA.” Like it was a surprise. I’m now taking Cimzia.
wow Debora.