Hardest #rheum Question From a Reader: Where Do I Go From Here? | Rheumatoid Arthritis Warrior

Hardest #rheum Question From a Reader: Where Do I Go From Here?

Your comments, I’ve said, are a special blog in themselves, rich with insight and passion. Let’s talk about a recent comment by Paul on What’s Your First Symptom of Rheumatoid Arthritis:

Hi All , my nanna was critical with it my Mum has spur’s on her spine her fingers are twisted and knarled and can’t hardly walk and is in so much pain poorlove , I have know turned fifty my fingers are now starting to twist my joints in my fingers are painfull my thumbs feel if they have been pulled out of there sockets I can’t do much Manuel work with my hands without realy suffering for days after with pain , I’ve been to the doctors he looked at me if I was waisting his time after going back 3 times he reluctantly sent me for an xray I rang up after a week and was told it was negative please tell me were do I go for here .

Hi, Paul.

Thank you for writing your comment. It seems like it was difficult for you – that’s something people don’t think about, that typing and other things are hard for many of us.

I’m sorry your Nanna and Mum have suffered so much. It’s another thing people don’t realize, how many of us have watched loved ones suffer or die from this disease. Personal experience gives us unique insight and perspective about rheumatoid disease (RD) and treating it.

“Where do I go (from) here?”

swollen-red-joints-rheum-pinterestPaul, would you believe THIS is the question most people ask when they write to me? It’s probably the one question that could sum up why people come to this site: WHAT DO I DO NOW?

I wish there were an easy answer. I wish all doctors could recognize all rheumatoid disease at every stage. I wish every patient could get a test such as an expert musculoskeletal ultrasound (MSUS) and doctors could see with their own eyes the inflammation causing symptoms you describe. Most of all, I wish there were a guaranteed way to make your symptoms better!

No doubt, if rheumatoid disease were as easily treated as a broken leg, you would’ve been helped by now. But it’s not:

  1. RA / RD is not properly understood
  2. Treatments are complicated, chancy, and costly

So, despite guidelines and recommendations, diagnosis and treatment of RD are still matters of professional opinion. There is very wide variety in how people with rheumatoid disease (PRD) are diagnosed and treated. Many do not receive recommended care, or like you, have left a doctor’s office receiving no help at all.

What can you do now?

I hope readers will give their suggestions below.

Here are a couple of my ideas:

  1. See another doctor for a second opinion. Ask to see a specialist who sees rheumatoid disease patients every day. Some rheumatologists mostly see arthritis patients (osteoarthritis).
  2. Ask for an MSUS of all affected joints. Depending on your location this could be easy or impossible. The operator should have done 100’s of diagnostic ultrasounds – NOT the same training for merely guiding injections.
  3. See an orthopedic doctor to treat specific joints that are giving you a lot of trouble. Physical therapy, injections, or even surgery may eventually be options.

NOTE: PLEASE READ the recent post about the “$10 tornado” my Uncle is raising for our legal emergency. If you have already donated, please SHARE the link with everyone you know. Every $10 or SHARE helps get closer to the goal.

Read more Warrior about “Where do I go from here?”

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/

13 thoughts on “Hardest #rheum Question From a Reader: Where Do I Go From Here?

  • November 13, 2015 at 1:49 pm
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    I’m in the same place he is here in Canada. I’ve been to my GP numerous times, seen two Rheumies, and been to a pain clinic. The only test that’s positive is a speckled ANA (3x) Also mild osteo showed up in my back and hips.

    Something more is very wrong with all my symptoms but they refuse to look any further with me. They tell me there’s no sign of autoimmune and it’s stress. Well why did many of my joints start hurting bad over a very short period of time, spreading progressively, and the pain is getting worse and swelling has started? RD runs in my family too as does other autoimmune illnesses. I’ve hit a wall. I have nowhere else to turn. I’m sorry you too are in this position. It sucks.

    Reply
  • November 13, 2015 at 2:02 pm
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    Kelly,
    I read Paul’s post and your reply with great interest (as always). The one thing that stood out for me was the necessity to get a MSUS! I was on Orencia for about a year and a half when my doctor sent me to get some guided injections done on the deteriorating bones in my foot. My rheumatologist (who I love – she is amazing) had said that despite some swollen joints, that my “numbers” looked really good. The day of the injections finally arrived ~ The ultrasound technician scanned my foot and then called in the doctor. (He was supposed to be doing the injections) He scanned my foot and then my knee and then asked if I had pain elsewhere….where do I begin I said. He scanned my hands and then asked me if I had discussed changing medications with my rheumatologist. I said no, that she had said my numbers were good. He said that I had so much active disease that there was no point in injecting just my foot. He told me to go back to my doctor and discuss changing meds – the biologic that I was on was clearly not working. So that is just an example of how important it is to get the MSUS done if at all possible. Examination and blood work don’t always tell the true story – that is clear in my case. As always thanks for your guidance and support Kelly. (Hugs for you and Roo!)

    Reply
  • November 13, 2015 at 2:17 pm
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    Yes, first get another doctor and make sure he/she is aware of family RA history. Make sure they do the most basic of blood tests for RA,
    Second-make a list of the 5 most important questions you need answered at this visit (I write down 3 to 5 questions or updates each visit and I give a copy to the doctor so they are aware of what’s going on and what I need to know now).
    Read everything you can on RA, this will help you understand what’s happening and help with questions for the doctor.
    Food choices don’t affect everyone, but make a huge difference for me. Tomatoes (nightshade veggies) almost kill me with pain. Dairy also triggers many of my symptoms-do a food diary is something you can try on your own.
    I also bought every little tool/gadget/thingie I could find to make my life easier. Compression gloves, ankle braces, jar openers, etc, make the difference in everyday activities.
    So many RA patients don’t ask for help, please, please learn to ask for help even from strangers-I explain I have RA and ask for help lifting something-you’ll be amazed how helpful most people are.
    Praying for you to get the positive help you need, J

    Reply
  • November 13, 2015 at 2:25 pm
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    Thank you guys for your comments it gives you some comfort to know that we are not alone with this complaint I surpose it could be worse I know this will get worse with time and not better I’ve been back to GP and been sent to the hospital for blood test he put down for them to check Pain in joints we will see what comes back in the results thanks once again for your replies God Bless . PAUL .

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  • November 13, 2015 at 4:11 pm
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    Hi again I forgot to add iam in England they should have same equipment here ? I think most of you are in Canada .P.

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  • November 13, 2015 at 4:32 pm
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    Thank you for all the ideas that you proposed after reading your article it made time the time for me to go get a second opinion on my RA. I was told that I had no active RA. So need to find a Rheumatology doc that knows about all of the different kinds of arthritis so I can know how to treat it.
    God Bless and keep you

    Reply
  • November 13, 2015 at 5:18 pm
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    Be the”squeaky wheel”… I kept going back to my primary care and when she realized that I was “tired for no reason” & hurt all the time and my joints kept swelling …. She referred me to the new dr in town who was a rheumatologist he saw what was going on …. So keep squeaking!!!! They will listen… Took me 2 years… God bless you! 🙂

    Reply
  • November 13, 2015 at 6:33 pm
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    Paul,
    I am so very sorry you’re going through this! I agree with everything Kelly said! I thank God I have a good Rheumy and have from the start. I’d suggest you find a rheumy who uses tests,physical exam and the MSUS in diagnosing. My ANA was negative but my CRP and ESR were VERY elevated, indicating sever inflammation in my body, and my joints were swollen and painful. He used all of this to diagnosis and treat me. Aggressive treatment of RD is a MUST in order to keep us functioning. Prayers for you Paul!

    Reply
  • November 13, 2015 at 6:35 pm
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    It took the Vectra DA test for me, when it was positive, actually I was in the high disease activity level no real surprise for me, my new rheumatologist had a whole new attitude about what kind of treatment I need. I left this week with a injection in my knee that had been killing me for weeks, a months supply of samples of xeljanz, and a follow up in a month.

    Reply
  • November 14, 2015 at 7:47 am
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    Hello Paul. Sorry to read of your frustrations. I’m also in England so thought I’d add a comment even though I’ve been living with my RA for 20 years now. Nobody took me seriously at the beginning even though there were visible signs, in my hands especially. It took almost 2 years of harassing my doctors to get a referral to a rheumatologist and then all the standard blood tests came back negative. I was 31 with 2 small children for whom I couldn’t care properly, and wondering how I’d cope, but thank goodness for my wonderful husband who did everything and kept me going. Eventually I spent 3 weeks in hospital having serious tests, physio and hydrotherapy, ultrasound etc. They started me on medication and things slowly improved. I still have flare-ups from time to time but mainly life is good. I had the joints in my right hand replaced 3 years ago and they are now pain free.

    The most important thing to remember is DON’T GIVE UP!! Keep asking for more investigations. Eventually something will show up and give them a clue! Then they will be able to do something about It. Good luck

    Reply
  • November 30, 2015 at 6:04 am
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    Can someone please tell me if you know of a knowledgeable rheumatologist in southeast Michigan. I was diagnosed with RA and Sjogrens in 2003, after several years and misdiagnoses. However, my rheumatologist moved and I am now in this awful place that so many of you describe. A place I was in 16 yrs. ago and cannot go back there again. I am seeing doctors that take 20 min. (even for a first visit), don’t listen, don’t know how to properly examine joints, see what they want to see, place emphasis on what they don’t see instead of what is present, etc. Sadly, several of these doctors are from U of M, where I was told by another rheum to get to as soon as possible. I am thankful that I am a nurse because there is so much information I should have been given, but wasn’t. My first rheumatologist took 2 hours listening and reading my history along with performing a physical. She then took another hour explaining what she saw in my X-rays. I was seronegative, but had an elevated ANA for several years. The day I saw her I didn’t have grossly swollen joints, but she put everything together, my history, symptom onset, progression of sympyoms, fatigue, loss of strength in my hands, loss of function, gelling, stiffness, the list goes on. My rheumatologist looked at me and the symptoms I did have, which were classic in so many ways, instead of what wasn’t present at the time. I am desperate for help. If anyone knows of a rheumatologist in the metro Detroit area-Novi, Northville, Livonia, Farmington, Ann Arbor, Plymouth, West Dearborn, Brighton, anywhere close to these cities. I would appreciate any help. Also, Kelly if you could print or email me your “good doctor” list. Thank you so much in advance.

    Reply
  • November 30, 2015 at 1:30 pm
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    I am looking for a good rheumy in Texas, my Ins company is OK with letting me go out of town and will approve it as an in network if I can find a doctor that I want to co to. I don’t want to pick one out of the phone book. I was wondering if anyone sees a good one in the South Central Texas area. Austin, Waco, Scott and white any of those? Thank you

    Reply
  • December 1, 2015 at 1:25 am
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    Hi Kelly & Warriors, I didn’t know where to place my comment, so I’ll drop it here & maybe one day we’ll discuss. In my role of advocate for another patient, we had an office visit with a well known rheumatologist. While thoroughly examining the patient that I was advocating for she had determined the patient did not have an autoimmune disease & then dropped this bomb into the conversation “You don’t want one of my diseases”. Seeing as how I was not the patient on that day & I was a bit shocked & hurt, I didn’t let on that I had one of her “diseases”. If that’s her feelings on it, where do I go from here?! I left the office feeling more hopeless than I have felt in a long time.
    I will give her credit for being a great Dr., I’m sure she felt at ease since she had determined the patient did not have an autoimmune disease & other than a slight pred face – I don’t look “sick”….

    Reply

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