My Quest for Answers to Questions About Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

My Quest for Answers to Questions About Rheumatoid Arthritis

The spear is a pen!

PollyAnna wrestling windmills?

A conversation left me stunned yesterday – until I got my PollyAnna on. Now I see that there is good news and bad news. But, I’ll need to back up a bit.

The Quest

Like most people, when I was diagnosed with Rheumatoid Arthritis, I was on my own. I had no idea what “typical” symptoms ought to be or how doctors expected me to describe them. Even though my own grandfather had had RA, I was clueless.

First, I explored the internet for stories from other people with RA. Next, I went to medical journals. I printed out piles of pages. Then, I went to the library. I know I have read over a dozen Rheumatoid Arthritis books written by rheumatologists and published by reputable sources. Eventually, I joined a couple of RA forums. And I ultimately started following three RA blogs on Health Central.

I learned a lot. However, I got pretty frustrated too. What I read in the books did not usually match up with the experiences of the patients I encountered. That is when I committed my original sin as a patient.

The Confession

I started making a mental list of ways that I believed the doctors to be wrong.

I started noticing journal articles which contradicted specific statements of other well-known sources. Testimonials of patients stood starkly against the picture of Rheumatoid Arthritis painted by the medical community. I scratched my head.

Bear with me one more moment and I will tell you what happened to me yesterday. First, let me specifically state a few of my concerns related to defining and diagnosing Rheumatoid Arthritis. All of these erroneous statements were told me by rheumatologists either in a book or to my face or both.

Wrong things about Rheumatoid Arthritis doctors told me:

  • You cannot get RA in every joint.
  • You cannot get RA in your spine.
  • You cannot get RA in your DIP joints (by your fingernails).
  • Your ESR (sed rate) is the most direct reflection of disease activity.
  • A “normal” ESR indicates that RA is in remission in spite of reported symptoms or other high labs.
  • Rheumatoid Arthritis is primarily a hand disease.
  • Visible external swelling is required as evidence of disease activity, damage, or pain.
  • The ACR diagnosis guidelines are sufficient to diagnose Rheumatoid Arthritis.

The good news and the bad news

Here is what stunned me yesterday. I had brought some of my questions to the attention of a well-known rheumatologist. His reply was staggering. First, he agreed with me on the merits of every point I made to him. That’s the good news.

However, he repeatedly pointed out that he would not acknowledge that he had ever heard of any rheumatologist anywhere who believed any of the statements which I brought to his attention. He said he does not see a problem. I do not know how to explain that. I have not only read those “facts” in books and heard them directly from rheumatologists, but also had my findings confirmed by daily contact with other patients.

Am I tilting at windmills?

Don Quixote part 1, chapter 4: “I don’t let clouds come before my eyes, for I know where the shoe pinches me.”

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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40 thoughts on “My Quest for Answers to Questions About Rheumatoid Arthritis

  • October 9, 2009 at 8:43 am
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    1- I don’t believe you are tilting at windmills.
    2- I have an idea that I would like to bounce off of you- could you drop me an email? I assume you can see my email on here when we submit the comments. :chic:

    Reply
  • October 9, 2009 at 10:02 am
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    Jules:
    1- once again wondering if I’ll need a patient protection plan. haha. 😯
    2- Email on the way.

    Reply
  • October 9, 2009 at 8:41 pm
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    I have had RA for 10 years, I know from experience and about 10 doctors how frustrating it can be to get a correct diagnosis and get the care we need and the respect from doctors,family and friends. They want to understand but it is impossible unless they have been there. I am trained as a registered nurse, worked with elderly for 25 years, thought I understood pain, always responded to my patients requests for medications,etc. But until I was hit with RA, I was clueless!!!! Everyone needs to understand that a person does not need to be rail thin and pale gray to be really sick! People with RA have numerous health problems and doctors often even fail to understand. We need to band together and get the message out to the public how devastating this disease is, it takes your life away almost immediately, sometimes it will give you a small glimpse of it back and them will grab it back just when you think your in remission. I’m sorry, but this is the first time I have ever responded to a post and have a lot of anger toward RA. Hope this might help someone else or a family member to understand. Thanks for your website, it is a good, informative site. 🙂

    Reply
    • March 13, 2010 at 8:17 pm
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      I can’t believe how much of my life is and my feelings are being described in these emails ! It’s a scarry place to be when you feel sooo alone ! I’m so sorry for all of you that understand… I know your PAIN !

      Reply
    • August 23, 2011 at 6:41 pm
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      hi what you have said is how i feel. im 20yrs old.. i first got told i have ra at 18. i am on methotrexate. it is so horrible this ra crap… i wish it would go away it have made my life so bad. i have a beautiful 2yr old daughter i have to have pain killers every day just to get trhough the whole day…. so i can go to the park and the beach, push her on the swing. it really disables you RA. im just worried beacuse i have read that it can kill you or permanitly disable you.. im just worried. i really dont know what it does. im too young to have this its to unfair no matter the age no one should get this crap. some days i cant even walk properly. or use my hands to turn a tap on.

      Reply
  • October 9, 2009 at 8:55 pm
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    Jane,
    Thank you for the thoughtful comment. You speak for many others. I hear the same things every day. Over and over. For many of us, RA does as you say “take your life almost immediately.” I wish that every person who does not have RA could read your comment – especially every doctor. Also, you mention the respect issue. I have wondered how to even write about this without appearing defensive. However, as we both have said, we must speak out – we are the only ones who know.

    Reply
  • October 9, 2009 at 9:38 pm
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    Kelly, Jane Robbins again, I read your post on Fifth’s disease, that is what I was diagnosed with in 1999 when my symptom’s first began, it is what has been determined to have started all my disease process. It is very interesting that some doctors say it is not related and some do. I saw an Infectious Disease doctor at a teaching hospital, I live in Texas, and he diagnosed me with Human Parvo immediately, then did the blood tests which came back highly positive, my rheumy that I see now, (who I love), agrees that parvo probably did start the process, I did have the gene for RA, my great-grandmother, grandmother, mother and my brother all had it in their 40’s and I was 42 when it hit, all of a sudden, was fine one day and could not walk the next. Currently I am taking Humira 40 mg.,Plaquenil 6oo mg daily, Prednisone 5mg. daily, Sulfasalazine 2500 mg. daily and pain meds prn. I feel like I should rattle when I walk but at least I can walk now, I was bedfast for about 6 months and then walked with a walker. So, the moral to this story is, don’t give up! If the doctor your seeing does not help, seek another one, there are doctors that care, even if they are few and far between. Thanks again for your informative site, I have enjoyed it so far. Jane

    Reply
  • October 10, 2009 at 12:37 am
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    Hi Kelly,

    Perhaps it’s a good thing that I’ve NOT read a lot of books on RA. I have been reading journal articles, but not for general RA information.

    I’m one of those seronegative patients who before I was finally diagnosed was to the point of crying in pain which caused me the desire to cut my arms off. I didn’t recognize the pain in my toes and ankles as being related.

    My rheumatologist examined my joints, looked at the bloodwork results I had brought with me from previous years, and ultrasounded the joints in my hands. She asked what symptoms had been going on years earlier when my SED rate was “slightly elevated” (according to my PCP) at 31 and was tested for RA, thyroid disease, and lupus. Of course, the answer was my hands not feeling “right” and an overwhelming fatigue. She said that if I had come to her then, she probably would have dx RA even without a positive RA factor.

    Luckily for me, she doesn’t repeat the incorrect statements you have listed above. And the swollen joints on two fingers of my left hand, which apparently didn’t scream RA to any of my other doctor because they weren’t warm to the touch, well I’m left with a boutonniere deformity.

    Lisa

    P.S. There’s something trying to reload on your page which is disrupting the flow. Have you added something new lately?

    Reply
  • October 10, 2009 at 1:41 pm
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    Not tilting against windmills…just confronting a system that is sorely in need of attention. Every wrong thing on your list has happened to me. In fact, I’m sitting here writing this reply and my right thumb DIP joint is killing me!

    I don’t know the solution but as we talked about earlier this year, I’m still thinking about some sort of way to compile collective patient information.

    Reply
    • October 16, 2009 at 9:42 am
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      Andrew! please forgive me for smiling as I read your words “everything on your list has happened to me.” :razzmad: It just feels good to know you are not alone.

      I would be happy to discuss the other issue when there is time. I am doing what I can – announcement next week I think.

      Reply
  • October 11, 2009 at 10:32 pm
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    Hey Kelly how goes it? I have had a horrid couple of weeks, pain in limbs is getting serious and I am wearing a leg brace to help me walk…. but enough about me, I was reading up on celebrities who are in constant pain, one of them is Jerry Lewis, I like how he said it
    (Jerry Lewis: “Chronic pain is not like any other malady. It is consistent. It is laborious. It is constant. It doesn’t leave you alone. It is the number one reason that we have suicides in this country today.)

    He is using a device to control his pain, called a Chronic Pain Relief Medtronics Neurostimulator?? Have you ever heard of this and do you think it could help some of us with RA?? I am always on the read for news to help all of us! Drop me a line if you have heard of this?

    Reply
    • October 16, 2009 at 9:49 am
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      Yes, I have heard of folks using stimulators and Tens devices. It seems to be a very individual thing – whether they help. And an implanted device is an extreme step – I think that is usually for back pain that for some reason is inoperable. I have never researched this topic. I’d gather as much info as possible and then ask your doc whether it is an option for you.

      I am sorry you are doing so much worse right now. I keep repeating to myself: I have been here before and I came through it… Also helps to know you are in good company. Jerry Lewis is good example. :rotfl:

      Reply
  • July 27, 2010 at 11:30 pm
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    “Visible external swelling is required as evidence of disease activity, damage, or pain.”

    This seems to be my current Rheumy’s position (have not found a new one yet). And one of the attending physicians where my PCP is that I had to see once also. This doc who’s not my doc, said to me, “I don’t see any swelling”, as if that was the end all of determining my level of pain on an ongoing basis. I love that rheumies use 15 minutes out of one day, out of 2-3 months, to determine what your levels of pain and disease activity are overall. I can be completely disabled at times, but then the day I go to the dr, I have relatively no swelling – and that’s how they judge my condition overall…I keep repeating that it’s on and off, but I don’t think it registers with them…

    As far the “not being in the spine”, I’ve said this before, but I think it’s total bullshit. My doc says only in the upper area, like the neck. I would love to see some research on that, Kelly. If your reading this comment and you have any links you can reply with for me I would be grateful. Thanks.

    Reply
    • July 27, 2010 at 11:31 pm
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      and no I don’t think you’re tilting at windmills (though I must confess, I have no idea what that means lol)

      Reply
      • July 28, 2010 at 4:04 pm
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        Michael, this is a reference to Don Quixote. I grew up listening to Man of la Mancha. This is the origin of “The Impossible Dream.”

        Reply
    • July 28, 2010 at 4:10 pm
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      I don’t know if you’ve seen them all yet, but there is a “Tag” for “Spine” in the dropdown thing at the top of the page. Click the little gray arrow & click on the word Spine. Some of the posts there have more links on them to more scholarly articles on RA in the spine. Just like the DIP joint or sternum or larynx… a good doc knows about it. It’s not rare. But I hear your frustration. & I think that’s not rare either.

      Reply
      • June 29, 2011 at 7:24 pm
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        I do not have RA myself but my sister does and I have been following her experiences for quite a few years. I remember the time when she was going to the rheumatologist who gave her methotrexate and others drugs and said it would be forever. Then someone showed up in her orchestra (she is a violinist) who had gone from being in a wheelchair and being fed to full health and is now the mother of three young children. She had discovered a doc who accepted that her disease was caused by a mycoplasma and could be treated with a particular low-dose antibiotic, I believe a tetracycline. So my sister Helen fired her rheumatologist (who wouldn’t have anything to do with it) and talked her GP into trying it. Helen has been making steady improvement ever since and is overjoyed at the improvement.

        I don’t see any information on this site about this treatment but I would be happy to get someone in touch with my sister if you would like to know more.

        Reply
  • July 8, 2011 at 4:04 pm
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    I’m always amazed,dumbfounded and left internally cussing to
    myself at times, when talking with R.A.Doctors. How little
    they seem to know about the symptoms of R.A. I’ve heard most
    of what was written from my own (former) R.A. Drs. A person
    tends to get a little offended by their behavior, at least pretend to be interested,stop making assine comments about what they think isn’t hurting you and at least try to show some interest after all they are getting well paid for blowing you off. You really have to shop around for Doctors who have some desire to listen and help

    Reply
    • July 27, 2011 at 3:59 pm
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      Jane, I’m sorry RA found you. But it was nice that you found us. My daughter enjoyed looking at your paintings with me. She’s an artist too.

      Reply
  • August 23, 2011 at 6:31 pm
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    Hi, im 20 yrs of age i have RA. im on the medication methotrexate.it is horrible to live with RA. it hate wrecked my life. i dont get to do what a normal 20yr old can do. i have a daughter she is 2, my RA flared after pregnancy. i had my daughter when i was 17, then found out i had RA a week be for my 18th birthday… my question is can RA ever go away? or will it disable me?

    Reply
  • October 19, 2011 at 6:30 pm
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    A good doctor is worth their weight in gold. It seems like there are a lot of rheumatologists who had bad training, because it sounds like we’ve all met them. I had one tell me that the arthritis in my feet was caused by flat feet and the swelling in my hands by my thyroid condition so there was nothing she could do for me. She made me feel like a hypochondrial idiot. So what that the onset and combined symptoms were typical of RA. Thus I wasted a year of getting treated and suffering! And thus lies the frustration…

    Reply
  • April 27, 2012 at 8:36 pm
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    I feel awful like i have the flu in all my joints. My head feels funny I have ra and other conditions. Lately I have chest pains on the left side and numbness in my left elbow.it seems to come and go. it is not all the time. But lately I feel awful and just want the pain to stop. Is there a dr avaibile how can help me for free. I need to know what is wrong with me.now.

    Reply
  • August 28, 2012 at 12:26 pm
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    very good website.Ive been through countless x rays,mris etc-for pain in spine,pain in hands and now debilitating pain in shoulders.Ive been mis diagnosed with spondilitis,carpal tunnel and burcitis and pinched nerve.now that i have Ra diagnosis they are all caused by that.Im 50 and was very active untikl this.I remember being 6 years old and meeting my great aunt.She really scared me with her appearance.although she was very beautiful and extremely sweet,her hands were horribly deformed (as well as her feet Ill assume because she was in a wheelchair.God knows she suffered and that memory has haunted me ever since I was diagnosed withthe same disease.

    Reply
  • May 11, 2013 at 7:29 am
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    Great post. Low sed rate, RA test negative after being on methotrexate 15 years Embrel eight years, Remicade seven years and now on Orencia. Both knees replaced, l-4/l-5 x-stop implant, c6 fusion, both hands and trigger finger releases. I never had swelling in knees, but they disentergrated over six months. I did a bone scan and lit the thing up in every joint, including spine. You are right on.

    Reply
  • May 17, 2013 at 7:39 pm
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    Can someone help me find a decent rheumatologist in the Chicago area. I have had scleritis for three months, severe back pain worse in the night and morning, knees are stiff like wood, and extreme fatigue that is interrupting my life so very much. No one will help me.

    Reply
  • September 2, 2013 at 7:20 pm
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    Thank you for all the info on this site. Just diagnosed and still in the shock and awe stage (and I may be for some time). I get some perspective here and I appreciate it.

    Reply
    • September 2, 2013 at 7:37 pm
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      glad you found us so soon Lana. This is a bit of a funny post – makes me smile reading it again. Good luck with everything.

      Reply
  • October 24, 2014 at 12:16 pm
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    I have had RA for 8 years. I read a book sometime ago about antibiotic treatment. I would love to find a doc willing to try this on me as I have been on Enbrel, Mx, Humira, orencia and now Remicade infusions….nothing works for very long. My Rheumy refuses to even discuss antibiotic therapy with me…says it doesn’t work. Right now, my Major flare is in my low back and spine…only relief I can get is to lie down….and I take way too many pain pills which cause their own problems.
    Kelly, you were greatly missed…so glad to have you back! I look forward to being in the company of others with RA through this website. God Bless,
    Sue

    Reply
  • February 12, 2016 at 12:09 am
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    I recently was diagnosed with acute RA and I’m not enjoying life anymore I’m aged 52 and think all day of how I used to be gave me insight into this disease and has made me more compassionate towards other people. All the above I agree with and its good to see I’m not alone. I feel myself deteriorating quickly hope the drugs cut in soon. Thank god for steroids lol pain relief with them until I qualify with the government for the injections. I’m going to try hemp oil meanwhile will keep you posted on it it helps.

    Reply
  • April 3, 2016 at 1:02 pm
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    I would like to know if anyone has controlled RA with natural means. There must be someone that does that? Instead of taking the Methotrexate? Has anyone tried the Low Dose Naltrexone? Just wondering about those things. I was ‘diagnosed’ on February 25th.

    Reply
  • September 30, 2016 at 6:12 pm
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    Joani3
    I have tried many natural supplements including diets however my RA has progressed and worsened. Now I take Humira and inject Methotrexate.
    However I still continue to eat gluten free/ organic and take supplements to help support myself.

    Reply
  • October 24, 2016 at 11:18 am
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    Commen theme in terms of physician responces. As an RN, ACM, CEN, CLNC had some knowledge base to refer to. Mine started in my hips….. Overnight. I convinced myself that RA typically does not start in the largest weight bearing joint first,until I had a bursectomy with release of the IT band. Not a fun surgery, however neither was the THR. The Ortho forwarded me to an RA doc, thus the 3 years of misery was now understood. Trust you body and instincts .

    Reply
  • November 15, 2016 at 1:22 am
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    My RA started in my feet the doctor I was seeing told me my feet looked normal to him. I have skeleton feet my toes never touch ever but my so called normal feet were like fat sausages swollen beyond belief. He ran all the blood tests my ra factor was 118 normal was 18 my crp Ana esr sed rate was through the roof but I was missing 1 factor so I didn’t have RA a dry patch on my skin was what was missing. I’m sorry but he was a quack. I then found a dry patch and of course now I have RA. He gives me 2 choices of medicine methotrexate and prednisone. I tell him I don’t want prednisone while I’m in his office he tells me to take home literature and decide with my Husband. I didn’t need that time but I did it. I had appointment 2 weeks later told him I want methotrexate. He then starts preaching that I don’t want that I want prednisone.It took 4 months and still he wouldn’t give me the methotrexate then I find I need surgery a hysterectomy he says see I can’t have the methotrexate.After the surgery I couldn’t belive all my symptoms were gone I went in for the iv and couldn’t make a fist after the surgery I could squeeze and break your hand. Lol So I was good for another 3 weeks after the surgery. Then the RA came back with a vengeance my toes were instantly damaged so I go back to dr. He won’t give me the methotrexate still so I couldn’t stand it anymore started prednisone that day. I ended up having my leg swell and my knee swell up I had knee surgery before on that knee. Turns out I was on too high of a dose of prednisone and it had tore the calf muscle and I had to have another knee surgery for meniscus tear. My surgeon gave me a number of a different RA dr.Best day of my life before the knee surgery I got to see the new RA dr. He was awesome he ended up giving me the methotrexate to be taken right after i was cleared of infection after my knee surgery. I went into remission after taking max dose of methotrexate /enbrel shots. Many cortisone shots later finally got me off the prednisone. After 3 yes I was doing great. Then my insurance changed I couldn’t afford to stay with my RA Dr was forced to go back to the same placel I started 2012 to now have been awful not the same dr i had before but the head of the ra clinic. Oh my god I’ve been giving prednisone immediately for flares. I’ve had humira,orencia,actemra,and now xeljanz I’ve had elbow surgery 4 cortisone shots in it to get it straight and to bend again in 2015 now having such trouble waking my feet are eroded. He tells me is not ra and my back and neck aren’t either. I’m so screwed. Sorry it’s so long but I’ve been awful lately nothing works anymore and he says don’t worry he will get me back to work.

    Reply
  • December 8, 2017 at 11:13 am
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    Hi everyone this is my first time posting. I’m 42 years old male and was recently diagnosed with osteoarthritis in my hands by my doctor via X-ray.

    Based on my x-rays my doctor told me there was not a whole lot I could do since it was just normal osteoarthritis wear and tear. Upon my request he referred me to a rheumatologist.

    My RA doc looked at me and said I had OA and not RA. She ran blood test to rule out and all came back negative. I don’t have any swelling or a quarter of the pain from what I’ve read in these posts. I pray for all of you!!

    I’m not sure if my anxiety is getting the best of me. For the past two months I seem to feel nausea. My x-rays show no arthritis in my thumbs but for the past two months my thumbs have been hurting not at the base where everyone else describes for Arthritis. I had a nerve Test completed and it ruled out carpal tunnel but did show Minor nerve entrapment in both elbows.

    I’m not sure if it’s due to the cold weather but I’ve had minor aches and pains in my left glute area and behind my right knee. There is no swelling on my elbows or any bumps.

    My orthopedic surgeon says that it could be very early stages of carpal tunnel and that test sometimes cannot find that out. I guess I’m trying to confirm what my doctors have diagnosed me with since there are so many conflicting symptoms with arthritis.

    Thank you in advance everyone and God bless all of you.

    Reply
    • December 9, 2017 at 4:27 pm
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      Hey Daniel. I’m sorry you’re in pain & going thru the confusion of docs not sure what they see in your joints.
      You sound like you’re doubting or blaming yourself (suggesting it’s anxiety), which is common for us. So try to give yourself the same benefit of the doubt you’d give your friend or brother.
      In my opinion, you’re too young for OA in so many joints – unless you are an Olympic athlete in more than one category.
      Xrays won’t tell you much since xrays don’t show erosion until it’s severe – we use lower radiation than decades ago.
      Swelling does not have to be obvious or extreme. It’s also not always where they look for it – on the tops of the hands. It’s often surrounding the tendons and subtle to notice, so a doctor has to know the right way to “squeeze” a joint or use ultrasound (not done in the USA usually). The best way for them to know what’s going on in your joints is to ask you about symptoms such as pain, stiffness, weakness or loss of function. A good doc will ask you and listen.

      I’m going to put a couple of links that might have info to help more than this page. They do have pages of comments so those are also very useful.
      https://www.rawarrior.com/do-i-have-rheumatoid-arthritis/
      https://www.rawarrior.com/what-is-the-first-symptom-of-rheumatoid-arthritis/
      https://www.rawarrior.com/tag/measuring-rheumatoid-disease-activity/

      Reply
  • December 8, 2017 at 11:25 am
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    I neglected to mention that I have a node on my pinky finger near the nail and recently had another grow on my other pinky finger.

    Reply
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