Is There a Typical Rheumatoid Arthritis?
Complications to understanding Rheumatoid Arthritis
Rheumatoid Arthritis is a complicated disease. I am not speaking of symptoms, medications, and lifestyle changes. I mean mechanically speaking – on a molecular level. It is complex and multi-level in its schemes.
That is one reason that experiences vary so greatly between RA patients: Which joints are affected? How many joints? How quickly does it spread through the body? Which other body systems are affected? How much destruction is there in the joints? Are additional autoimmune diseases involved? How does typical Rheumatoid Arthritis present (what I call the “onset story”)?
What is typical Rheumatoid Arthritis?
A couple of years ago, my rheumatologist began to say that my Rheumatoid Arthritis was beginning to look atypical. I did not understand that since the only RA that I knew was my own. Around that time, I began to dig in to investigate what is the typical Rheumatoid Arthritis experience.
I wanted to do the research for myself. WHAT is typical? I read everything I could find.
I have read several books and what is called “typical” differs from author to author. But, I also began to scrutinize narratives of people with RA all over the internet. And I also have connected with many one on one. What I have seen and heard from hundreds of people has not fit nicely into the neat categories or descriptions of any author.
Questions deserve answers
Every little thing that I learn raises more questions. If you have been reading this blog, you have heard me raise some of them. Can Rheumatoid Arthritis be understood or cured without answering any of them? I do not believe so.
A few of the questions that I have already raised:
- What are the Four Courses of Rheumatoid Arthritis?
- Is This the Best Time to Have Rheumatoid Arthritis?
- What Makes a Rheumatoid Arthritis Diagnosis So Difficult?
The only thing that I am certain of is this:
If there is any discrepancy between the experiences of people with Rheumatoid Arthritis and those who academically describe and define this disease, it is the descriptions that are wrong – not the RA’ers.
- It is not that they got their symptoms in the wrong order. Shame on them for not doing their RA right.
- It is not that they have fallen short by missing a symptom on the list. How could they be so negligent?
- It is NOT that the patients have failed the blood tests. The blood tests have failed the patients. The tests have failed to sufficiently indicate the presence of the disease. That is not the patients’ fault.
Why is it so typical to have atypical Rheumatoid Arthritis?
Recommended reading:
- What Is the First symptom of Rheumatoid Arthritis?
- Cricoarytenoid Arthritis in RA (Rheumatoid Arthritis), Part 2
- American College of Rheumatology Redefines Rheumatoid Arthritis, Part 3
Love this line "Shame on them for not doing their RA right."
I will be interested in your adventures with the new dr, how you found them, etc
How long will you be gone?
This is another frustrating thing about RA. My doctor often scratches his head about me. I am not a typical RA sufferer. He is sure that I have it because of the overall signs. But I wish it were a little more simplier.
My theory is that not everyone's RA is the same because there are other factors that play in to our lives such as exercise, what type, what type of meds and what point in our development of RA, work, stress, accidents, previous injuries, ability or lack of to take meds, get diagnosed early, ability to rest when needed. I think even some factors such as family support helps a lot. I do notice a huge difference in pain based on stress and anxiety, abilty to rest or not rest and now that I am horseback riding again which I hadnt in years and was SO painful to start doing again now makes me feel amazing though I still have the usual symptoms that I always do I feel a bit stronger and more confident because of it and less stressed. Sorry for the rambling I am not very good at being cohesive and straight to the point esp since it has been storming all day which means extra meds. Take care and be safe on your journey.
Kelly, thank you for all of your time and effort put into this. I enjoy and have learned a lot since finding your blog.
I often wonder how I would be doing today if my RA would have been properly diagnosed earlier. My best guess is it was approximately 3 1/2 years after I began hurting and was finally diagnosed.
Terry
Terry: I completely agree. I was originally diagnosed with reactive arthritis when I was a child approx the age of 8 though suffered since I was three yrs old. I was not finally properly diagnosed with Ankylosing Spondylitis until Spring 2003. Keep in mind I was born in 1983. That was a long time of symptoms prior to diagnosis. I think that you and I and so many others would have had our RA under control more quickly we would have less damage however with the recent meds that have come out, we would probably would have experienced less pain but still had damage. Who knows, its just a part of our story and we are lucky to have a diagnosis and live in an age of so many scientific discoveries esp in meds! Best of luck to your in your journey I hope it is pain free.
You have given useful information. This is the first time,I am reading posting on this topic
GREAT BLOG ! VERY INFORMITIVE !I loved it.
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I picked your Skins today- they need to get a move on! LOL
Wow. “Why is it so typical to have atypical Rheumatoid Arthritis?” That is THE question for me and it’s reassuring to hear someone else asking that too. What is this “typical” scenario and is it the most important part of this. What if we are missing a spectrum of experiences that could really help tackle what is happening and how to stop it. Sometimes I feel let down by the blood tests. Until I find a doctor like my present one who is not ruled by numbers but by patient experience. Makes a big difference. Thanks.
Catherine:
Wow is right. I will keep your words in mind as I try to convince some people that I am not the only one in this postition. Glad to hear you found a good doc!!
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Good Morning Kelly –
I went through several topics to see which one this question would fit in the most, but I guess this is the closest – or I am too tired to look more!
Last week I had one of the worst weeks I have had since my diagnosis. It was one of those weeks that I cried often and said “I can’t DO THIS anymore!” (like I have a choice!?!?)
However, what was brought to my attention by a supervisor at work – after some others NONunderstanding issues – that I seem to have a pattern – The 3rd week of each month – or roughly every 30 days – is when I seem to have a full week of ROUGHNESS where I miss 3 or more days of work (yeah I have FMLA but the LOOKS I get are always fun to deal with)
Does anyone else have a “pattern”? There are other days in between (almost all of them) but that week out of each month seems to be horrendous. I have had a hysterectomy so it is not ‘that time’ unless it is a ghost cycle………..
I would like to know your thoughts about this – I see the new Rheumatologist on the 11th since my guy has left the practic. Not sure what to expect. She is ‘female’ and I have had female docs before – and have found they are either very understanding or much LESS understanding thinking we should be ‘tough’.
Thanks as always and hopefully I can make it back to see your answer when I get finished with work today………
Love to the whole Warrior Clan and our “Kelly the Bruce”
First, thank you, Kelly, for the wealth of information that you have made available to me. I can do some research on the internet, but not even close to what you have done. Thank you, thank you, thank you. Stress, lack of sleep or enough down time during the day, the weather, too much or too little activity can all make it worse for me. I have DIP problems, too, and have found that using lighter pots and pans, light weight plates, plastic bowls, etc. really does help. We also help our plates from the stove over 99% of the time, and that helps a lot, too. My daughter, who also has RA, uses paper plates almost exclusively now and sometimes plastic forks, etc. The important thing is to do whatever you can to help protect your joints. On the inside, we are still the same people that we always were; we just have to do things differently now, and unfortunately, some things not at all anymore. That is so frustrating.
Yes, it is frustrating. Does she use paper plates because the others are too heavy to hold and carry and wash? I got rid of heavy dishes & pans. Actually, I eat with my hands a lot to save some pain.
P.S. I hope your new medication is working for you. That is hard to have so much pain for such a long time.
Thank you Charlene. I hope it will.
Came across a bit on the evolution of RA and probably why there isn’t a typical RA and why it might be so difficult to define (read the whole paper linked). In a paper discussing how “natural (positive) selection” is associated with complex biological (and autoimmune) diseases.
“RA has been found to originate from Native American populations from the Green River region in west central Kentucky. There are verified cases of RA in this population as far back as 6,500 years ago. No signs of RA were found in 63 archaeological sites bordering the original area in central Kentucky, where it was originally found [7]. Yet, there is documented spread in America over time. The first evidence of RA outside the original “catchment” area occurs in western Ohio about 1,100 to 800 years ago. At the same time, virtually no incidence of RA in other parts of the world has been found towards the end of the pre-Columbian era in 1785. This suggests that some environmental factor, perhaps a microorganism or allergen, might play a critical role in the cause of RA …”
From the paper: Extreme Evolutionary Disparities Seen in Positive Selection across Seven Complex Diseases
Found at this link: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0012236
Chelsea, I shortened the quote, but the link is there so people can read it. Whether or not there is a typical pattern (more likely a number of patterns) for RA, I just wish that clincians and researchers were aware it so that all patients could get needed treatment. All of my humor & sarcasm on the matter aside, that is all I want: patients to be treated. 🙂
I would love to know why I went to the ER 3 times in side of 2 months and was diagnosed with Bursitis and once they thought I had torn something in my shoulder from toting a heavy purse. I had an Ortho tell me I was sleeping wrong, and causing neck and shoulder pain. Should have been sleeping on my stomach with no pillow. A NP at my PCP told me if I lost weight and exercised I wouldn’t have as many aches and pains. But not one of them took blood work to test for an RF factor, CCP or SED. It took getting a nodule on my elbow for a new Ortho to do blood work. It came back with a normal range SED, neg ANA, but my RF was 463 (reference was less than 30) and my CCP was 67.8 (reference was less than 20). I should have been an easy one to diagnose years ago, but everyone was blinded by the fact that I am 75lbs over weight. Now I have so many symptoms my Rheumy says most of them are not related to my RA. I think what does she know, I’ve read hundreds of patient stories and many others have similar symptoms to me. I guess that’s why it’s called practicing medicine. We just have to learn to educate our doctors too.
Newly diagnoised….so thankful for finding this blog….you make me laugh. Which is good….cuz I wanted to cry before…
I have just been dx with RA,I do have ddd also.I have buldging discs in lower back n bulging vertebraes in neck.I have horrible pain all the time.Specific question is the pain in my legs is horrible I don’t know if this is RA or should I go see Neuro Surgeon n have new MRI it has been yrs since I had them.Pain doc said he wouldn’t put a needle in my neck at all because it might paralyze me.I started generic plaquenil Nov 9 no results was told it will take a few more weeks to know if it’s going to work.Whatever the test is for inflammation the doc said should be 20 or below mine was 89.I just want relief n don’t want 2 hurt for 12 weeks to see if a med is going to work.This all is new to me.
Wow Bonnie I hope the plaquenil helps you. Hopefully most of the pain is inflammation & it can get under control & then you’ll feel relief. An MRI could show whether there’s actually a structural problem to address.
Forgive me if this has already been covered. My doc took one look at my hands and feet and suspected RA. She did the squeeze test and because I didn’t have significant pain even though I had significant swelling and redness, she ruled it out. My hands are stiff, swollen, red and hot. They typically hurt most when I use them. I call it mitten hands. It’s like trying to button a shirt with mittens on.
Should a negative squeeze test rule out RA with no other tests?
No, it should not rule out rheumatoid. There are 5 usual signs of inflammation: pain, redness, warmth, swelling, and loss of function. All five do not have to be present for inflammation to be present.
Good question. I’d recommend a second opinion. Also get copies of your bloodwork to track changes. Did you have an anti-CCP test yet?
She tested me for inflammation and said it was in the normal range. I was also on prednisone and mobic for my back at that time. I have been dealing with this for so long and no one will listen because I don’t have insurance. I could give you a laundry list of symptoms. I’m just at my wits end.
The meds you are on could lower the ESR or CRP, whichever she used to “test inflammation.” You need an anti-CCP test to try to identify RA/ RD. Whoever provides your care should order that test because your symptoms have persisted. I’m sorry it’s so hard Amanda.
I’m sorry to hear that you all are having these problems, but I am in the same boat. I am from a very small town. There are no rheumatologists within 70 miles. When I was first told that my rheumatoid factor was elevated, I made an appointment with a rheumatologist 70 miles away, since my elbows had been swelling horribly off and on for years, I figured I would see a specialist. To make a long story short, he was an old pervert who wanted me to undress completely and totally at every appt. Since I would not, I figured my bra and panties was sufficient, He threw me out of his office after wasting 4 months. Now it is 4 1/2yrs later with no other specialists, but plenty of pain and swelling. I have a very high pain tolerance and thought that as long as I could tolerate the pain, I would. Especially since the side effects from the meds were so bad. I have been looking for another rheumatologist for many months, but to no avail. I finally asked my primary care doctor to treat my RA and she agreed at first but changed her mind. I had more labs a few weeks ago and all of the labs are now normal, but my joints are horrendous. I broke my back last year, had a hip replacement this year and my back doctor finally got to see my feet turn blue, which has been going on for over a year now. I know that I am complaining a lot, but I also have severe osteoarthritis and osteopenia but the fatigue is the worst thing of all! I have filed for disability, but of course I was denied because I am a registered nurse and they said that I can “do something”. I am at the end of my rope and don’t know where to turn. I have hired an attorney for my disability and am waiting for another rheumatologist to look at my history to see if he thinks that I have RA. I really don’t know where to turn. If anyone else have any ideas, please let me know.