Don’t Give Up | Rheumatoid Arthritis Warrior

Don’t Give Up

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If it weren’t so debilitating, I’d be ok

Maybe it’s the pain, but today I felt weary. Sara’s words resonated: “My doctor shrugged it off after the blood test. If the pain in my hands wasn’t so debilitating then I would be ok, but I’m still kind of worried.” The left side of my cervical spine became acutely inflamed again as I slept Friday night. The pain woke me up repeatedly and in the morning I said silently “It’s not bad” as I forced myself to stand up to get medication. Like Sara said, if it weren’t so debilitating, I’d be ok.

My mom and I saw a dozen doctors before my thyroid disease was diagnosed at age 15. Taking various meds that didn’t help and dealing with bewildered or skeptical doctors was hard, but we endured for a year because the headache and heart palpitations persisted. We would have been “ok” with never seeing another doctor…if it weren’t so debilitating.

Fighting Rheumatoid disease for seven years, I’ve reached this point many times. I would be “ok,” no, actually delighted, to never take another pill or see another doctor…if it weren’t so debilitating.

Try, try again

My friend Eric and his wife Kim recently marked the first year of Kim’s diagnosis with RA. When Kim’s Rheumatoid disease was not responsive to treatment and their rheumatologist wasn’t much help, they asked the advice of our community. And many of you responded on Eric’s blog that they should seek a new doctor. The new doctor had some opinions that are familiar to many of us. Seeing the list of remarks from this rheumatologist reminded me a lot of the day I met Dr. Tylenol; disheartened, I just made a list of the doctors’ statements to us.

In the same way, these remarks speak for themselves.

You’re not swollen, there is no inflammation, your labs are normal.
Opiates do not help or work on RA pain.
Your stiffness and pain is due to past inflammation not current disease activity.
Fatigue is a side effect of the medications you’re on, not the disease.
The tendon cramping/spasming in your hands and feet are not related to RA. They are caused by your muscle neuropathy. (Kim has never been diagnosed with a muscle neuropathy.)
It’s normal for your neck to make crunchy noises.
Occupational therapy will help with the stiffness, lack of strength and the pain in your hands.
You’re on too many medications (by the end of the appointment he wanted to prescribe another medication).
RA does not affect the back.

We will not let this disease win

“So let us not grow tired of doing what is right, for in due time we will reap, if we do not give up,” Galatians 6:9.

If Eric and Kim are like me, they don’t want to have to search for a doctor who understands Rheumatoid disease instead of acting dismissive. But of course they will continue to fight the disease and the search for a good doctor. We know they’re out there.

We must fight because the disease is debilitating. My neck (and my knees…) are not “ok” and I have to continue the fight. I know there is hope for me – for me and for hundreds of other weary patients who have written to me.

Recommended reading

Note: If you have a blog, write a post about how to keep the disease from “taking over” and send me the link for this week’s blog carnival – click here for more info.

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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60 thoughts on “Don’t Give Up

  • April 8, 2013 at 7:07 am
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    rawarrior Thank you Kelly for another excellent post! Still moving forward as we fight #rheum Blessings, prayers, & gentle hugs.

    Reply
  • April 8, 2013 at 7:22 am
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    Thank you for your posts on not being able to find an understanding doctor. I have had RA so long I could probably train a few know it all docs who brush off our pain or debilitating disabilities. They put me through so many expensive tests only to tell me I have had the disease too long and I have been on all the treatments so the pain must be from the old damage. I am discourged and there are not a lot of RA docs available here. It takes months to get an appointment…then the cycle of more expensive tests. 🙁

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  • April 8, 2013 at 8:02 am
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    It was nice to see the message, “Don’t give up”. I needed the reminder and it helped get me a good frame of mind for the day.

    I wonder why it is so hard for some doctors to get it while others, such as mine go right after the RA. She wasn’t my first doctor. I had two exam me before her.

    Parts of RA still confuse me. Is it a symptom, isn’t it a symptom? How come I have all this painful stuff happening but it is not the RA, or is it? What about the “itises”? My doctor does not seem to think they are related. I have achillies tendonitis on both sides, bursitis in both hips and shoulders as well as tondonitis in both elbows. Together they radiate and meet to cause one big conglomeration of pain. Is it a part of RA or not? I wish I knew. I never had any of this before my diagnosis.

    I wish them well in finding the right doctor. Good for them for not giving up!

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  • April 8, 2013 at 9:10 am
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    To all of you who have neck and back pain, hip pain, all of those things your doctor says are not RA; find a GOOD chiropractor. I was diagnosed 4 years ago, at 53,but the pain and swelling had been going on for 20 years or more by that time. Taking plaguenil and minimal steroids has done some to manage pain. Stopped taking methotrexate 1 year ago. The damage I already have is not going to get better. But I have felt so much healthier since I quit. I can deal with the pain and stiffness better than the illness that is caused by weakening my immune system. The chiropractor not only helps with the pain I have in my joints, but will work the muscles that are attached to these joints and make the whole area feel better. I wouldn’t have believed it if it hadn’t happened to me. Some of you can’t do this, i know. But for some of you it may be a relief that you would never have imagined. My decision is not right for everyone, but it’s the right choice for me now. I would rather have ten, good, painful but healthy years than to have 20 sick feeling, debilitated years. I know I may be choosing a handicapped state, but I want my life as full now as it can be. I don’t trust the doctors. They are just practicing. I am tired of doctors practicing on me.

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    • April 8, 2013 at 11:38 am
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      I believe your doctor is like most I’ve met. Arrogant, above reproach. They went into medicine for the money, perks, prestige. They never had an empathetic nerve in their body. But I will tell you that Cymbalta is NOT a good med. I had to take myself off at the hesitation of my doctor because I felt AWFUL all of the time. I was on it for four years, so I did give it a chance. RA is a physical pain. Cymbalta is a drug to fool you into thinking you feel better. A chemical answer for your REAL physical pain. Stupid idea! So, I don’t know what might help you. I am sorry. But, I had to share my experience with Cymbalta. It was not good medicine.

      Reply
      • April 8, 2013 at 5:53 pm
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        Thank you for your reply. Some times desperate times call for desperate measures…. believe me, I was/am desperate!! There aren’t to many meds that I can take, and all the standard ones did little or nothing to help. The Cymbalta worked for a while, however, now not so much. Constant pain, weakness in my hands, and the rest of my body for that matter is a 24/7 event! I will probably stop taking this soon, since it’s really not helping anymore.
        I have new aches and pains in my elbows and my left wrist sometimes. I am calling for another appointment with my Dr. Maybe now I’m “worse” and will be able to get the treatment that I need! Until then, I just have to “deal with the pain”.

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  • April 8, 2013 at 9:14 am
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    Here’s an amazing quote from my Dr., whom I usually like, when I asked him about getting an injection med, you know the various ones: “You have to wait until you get worse before you can get those. They won’t help you right now.”

    My thumbs hurt so bad! My fingers are swollen and sore. My feet hurt, my back, and my neck goes crunch crunch when I turn it too! I wonder…. just how “worse” does it have to get? Rught now, all I’m taking is Cymbalta for the pain, and he wouldn’t even perscribe it for me, my primary care had to!

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    • April 8, 2013 at 11:42 am
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      Dear Robin, please see the above post to me!! It was meant for you. Sorry. Have pneumonia right now and think I am loopy

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    • April 9, 2013 at 7:17 am
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      Robin – you need a new doctor, how much worse does he want? That’s just ridiculas. Methotrexate helped me some but not enough and when it wasn’t enough, my doctor offered me biologics and I don’t think my disease was ever what I would have called severe. But for me it was certainly bad enough. Biologics made a huge difference for me. For large numbers of people – not all – they are truly game changers, miracles. You deserve a chance at them.

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      • April 9, 2013 at 5:26 pm
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        Thanks Leslie! I had to google biologics, I didn’t know what they were. Now I do, and I am actually going to ask my dr. about Humira. I’m going to give him another try, and hopefully I’ll get somewhere. All I know is something has to be done to help me deal with the pain. My job entails walking on concrete, and using my hands turning keys. My feet and my hands, hurt the most out of all my pain spots.
        I still remain grateful to God that I am not as bad off as some. This is the first time I have posted on here, and am amazed that so many are having the same problems.

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        • April 9, 2013 at 6:47 pm
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          Hi Robin. There are several articles here about biologics. Look near the top right side of the page for the word Tags and click on the arrow. You can move up and down with your mouse to see all of the topics on the site.
          It’s nice to meet you. Thanks for posting.

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  • April 8, 2013 at 9:54 am
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    This list of statements makes me realize (once again) how lucky I am to have found my Rheumatologist! He has never once made a statement that doubted my description of how I was feeling. If you feel that you need to downplay your symptoms in order to make you doctor happy, then it is time to move on. Easier said than done for some I know.

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  • April 8, 2013 at 10:50 am
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    Hi Kelly,

    Many of us lack the energy that goes into finding a new doctor. As you’ve just proven again, the search could be a long one and even then there may not be a ‘forever’ doctor, like there is a ‘forever’ home. How do you feel about telling your doctor outright you want specific tests or to try a specific treatment?

    I didnt see any mention of the Vectra test? My rheum orders one every 3-4 months because I have very little visible swelling or inflammation at office visits. The Vectra test shows a higher disease activity level in my case, explaining why I am in such pain. The test scores have guided changes in treatment as we can see the direct effect each one has had on the disease activity.

    YS

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    • April 8, 2013 at 2:42 pm
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      YS, To say that I am aware of the difficulty in finding a new doctor would be the greatest understatement on this site.

      Part of my own journey is on this site, and I’ll summarize that past 7.5 yrs in a couple of paragraphs for you. After 3 yrs with a very compassionate but incompetent rheum doctor, I requested xrays as you mention. I’d never had any. The staff was extremely resistant and told me that any imaging was unnecessary. I had also continued 3 yrs on the same drugs, a higher than usual dose of a biologic (weekly Humira) and a higher that usual dose of mtx (25mg for someone at my BMI is higher than the >.4mg/Kg/wk that’s considered low-dose). The doctor did not prescribe any other treatments in the practice than those two. Leaving was very difficult since this was my first rheum doc and the doc had been very kind to me. But the staff was unethical and I was learning that other treatments are available.
      After visiting three extremely dismissive and ill-informed doctors over the next several months, including driving to another state, I did give up. I can hardly believe what we endured (I always had a friend and a daughter with me). It was costly and humiliating. I’ve written humorous posts about one who threw a space heater against the wall or one who told lies that ultrasound only works on MCP joints or one who yelled at me because I printed out a page from the NRAS saying RA awareness would be good for patients and doctors since people could get diagnosed earlier.
      I finally did try one more time and found Dr. Smart. If you search “Dr. Smart” on this site you’ll see why we considered this the first good rheum doctor I’d seen: I was examined for the first time ever. No questionnaires or PRO’s or joint counts, but I was examined & treated matter-of-factly with no emotion, which was all I had asked for – to be treated. So I was ecstatic. I made a video of my experience here.
      After 3 years of numerous failed treatments, I was told to “just wait for something new to be approved,” so I thought a clinical trail might be an option. The doc told me repeatedly that my crp is usually normal & would eliminate me from a trial. You can read some about that here. Several patients I knew with normal CPR had nuclear bone scans to show inflammation and I requested one. It was granted but I did not realize that request was considered a transgression – as my request for xrays had been 3 yrs earlier. When the hospital failed to read my scan, the hospital requested that I ask for a 2nd opinion only through my rheumatologist. I did so politely, in writing. By return mail, the same day, my doctor fired me – read about that & see my scans here. I appealed but they would not hear of seeing me again, saying it was too much trouble.
      Several months later, I’d made lots of calls and finally went to see another rheum doc. He assaulted me in a sexual manner – in front of my two adult daughters. Once again, as I said in this post – I did not WANT to see another rheumatologist. I have several friends who are rheumatologists, but as far as being a patient, I’d like to never see another one again.
      I did get into a clinical trial, run by a nurse who worked under a dr. That was a year of Rituxan treatment that I traveled to receive. Meanwhile I looked for another regular rheum dr more near home. We found a young one we hoped had potential & went in very open-minded & hopeful again (my daughter & my friend with me). This was Dr. Tylenol – read about what this dr said here. Over the past 20 months, I’ve been there 3 times. And I’m really sure that my 7 yr old knows more than this dr. We felt like I was the very first person with RA this doctor had ever met.
      Mostly my GP has helped me manage my care, seeing that I get needed tests or vaccines etc. I see other specialists for my eyes and neck and skin – all related to my RA disease but never examined by a rheum doc. I’ll soon see an orthopedist for my knees which have been swollen 3 yrs but never examined by a rheumatologist.
      Having the same GP, endo doc, neck doc, obgyn, pediatrician, derm doc, & pharmacist for several years has been helpful, but finding a good rheum doc – that’s another story.

      To answer your other questions, maybe it would be a good idea to ask for what you want or know you need, but we also see that there can be consequences. I’m a compliant, polite, and intelligent patient, but I never see a doc without witnesses. One thing that allows me to be thankful for these experiences is that when I receive similar stories from patients every day, I’m able to believe what they tell me.

      The Vectra is mentioned several times on this site, but it didn’t really fit into this post. We were one of the first to inform the patient community about the test. I’m glad the test works for you, but there is still not an “RA test” that is accurate in every patient. We’ve had several people saying that their doctors dismiss their disease activity because of a normal range Vectra test, the same way that the rheumatoid factor or CRP has been used in the past. That’s certainly not the fault of the test, but again, ill-informed doctors.

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      • February 18, 2014 at 1:21 pm
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        OMG, Kelly… I just posted a comment at the end of this blog without knowing the history you & others have posted. I’m 58, @ 53 my R.A. “turned on” like a switch, nothing before that. A previously injured knuckle joint doubled in size…taking Alleve twice a day…. my internist sent me to his recommendation of rheumatologist (and this is where I feel SO LUCKY)… a history, short exam & he said lets do MTX then if no results we’ll do a biologic. MTX made me nauseous so he stopped it & went right to Humira… all the joint inflammation stopped but I also had soft tissue inflammation around the the joints in y hand so we stopped Humira, tried Cimzia then Orencia… they worked less well than Humira so that’s where I am now but with a doubled dose = 40mg / week vs. 40mg / 2 weeks. Complete remission of the joint inflammation not yet for the soft tissue. He’s actually excited to be arresting the disease in someone so young (my mom had it & a lifetime of MTX left her terribly deformed). He says there are still many other biologics out there to try & a few coming that will be hame changers. What are the % of successful treatments w biologics? I imagined that all the RA docs would be using them but several of my friends have said that their docs won’t even try them?! From the nightmare stories on just this thread of unhelpful / incompetent docs it sounds like a main issue is finding a doc like mine who will start out aggressively & progressively treating w/o all the mumbo jumbo / delaying tactics keeping folks felling like they’re luck to get MTX when the biologics could be added asap after the mtx is an incomplete treatment due to PATIENT’S REPORT OF PAIN / INFLAMATION & ANALGESIC / ANTI-INFLAMMAORY USE vs. tests that don’t verify what the patient is reporting!
        Anyway, have most people never been given access to biologics? When they’re tried do they often work? I’ve heard so many success stories incl. many remissions? I have a blue cross PPO so I get to pick my own doc & got very lucky / my internist was written up as one of the top 100 docs in San Diego… maybe that’s a clue… so he recommends the best he can find? >Should we all find surveys for your city / region & go to them, even if it means getting on a plane (if possible?). The rheumatologist has an office staff person who calls the insurance co’s specialty drug department when the pharmacy stalls > weeks before I’d run out to insure the rx gets delivered on time. Hugs to everyone battling this horrible disease! My son Skylar 13yo just did a research paper on it so the kids in class will know what it means & have compassion for those with it’s crippling effects.

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  • April 8, 2013 at 12:22 pm
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    Thanks, Kelly, for the post, and to all the others for the comments! Discouragement is winning a bit these days, making me want to give up, and you all help me keep fighting, because you make me feel less alone.

    I think this is an important issue in ways other than the obvious…..finding the energy and will to fight. I think it is different from some other illnesses. With media attention, people have learned to “get” a certain sense or mental image in reaction to the names of particular diseases. Others, including doctors, “get” what some diagnoses “mean.” They know what to “expect,” and for some reason that might make the illness more “legitimate.” Friends, family, co-workers, doctors seem to know the appropriate ways to rally in support of some patients and some illnesses.

    We are so far from that point with Rheumatoid Disease and other Immune and Auto-immune diseases. For invisible, not so easily “provable” chronic illnesses, this is a burden, and it is one that matters. It is heavy on the patients, at times I think heavier than the disease, and at least certainly makes the disease harder.

    So there are the layers of the battle. As if the disease is not bad enough, in their weak, painful, debilitated states, RA patients are made to argue their cases, “prove” that they are sick and in need of treatment, and put so much energy into the chore of finding doctors and begging for treatment. That battle wears on a patient, harder over time, I am finding. We have to keep using our precious little energy to prove ourselves to our doctors, and often our family and friends (often made to doubt by doctors denying us), and it doesn’t feel like we get very far very fast.

    I find that particularly dismal. It is hard to keep fighting when one senses his or her doc is not fighting, maybe not even believing. How does a patient not give up on him or herself when it is so obvious in the eyes of the doctors that they are not invested? That perhaps they gave up before they started?

    Whenever a person is sick, they hope someone will “get it,” so they will feel less isolated, less like an alien. A person certainly hopes their doctor, of all people, would “get it.”

    We all know, from the kinds of things that are said to us in those appointments (which, yes, Kelly, we would all happily give up if we were not so debilitated!!–because who really wants to go to the doc to get abused, demoralized, etc. ??), that many of our docs do NOT get it. We know the dismissive comments, the hand-on-the-door, “can’t wait to get out of here” body language, etc., while we sit there trying to manage our pain and conflicting emotions at trying to keep fighting in a positive way, but at the same time not to hope TOO much for doc support and a treatment that helps only to have that dashed. It becomes hard to convince yourself to keep believing in the truth of what you know about yourself when the docs deny it.

    And that is where one of the greatest values of this site comes in! The support that it provides through sharing of stories and a core belief that we patients know ourselves is huge. This is one place where we don’t have to feel so isolated and alien. You all help me push to get up another day and keep trying.

    Thank you!

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  • April 8, 2013 at 12:40 pm
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    I am shocked that rheumatologists would be able to maintain a practice in this field while being so dismissing and ill-informed.

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    • April 9, 2013 at 10:10 am
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      Don’t be shocked!!! This is NORMAL!! I am old(57), and I have experienced many bad doctors in my life. I can count the number of good ones on one hand. Bad OBG, bad dermatologists, bad rheumatologists. They keep their practices because once a doctor has a practice, getting him out of practice is practically impossible!!!!!!!!!!! They go from state to state and other doctors will not speak against them. Once again, I will tell all of you; doctors PRACTICE medicine. Like a cellist PRACTICES their instrument, so to does the doctor practice his/ her craft. Some practice and get good at their job, some don’t. But it is very hard to pick out the good ones. Everybody involved lies, except the patient. Then they get the short stick and are told to go away.

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  • April 8, 2013 at 3:14 pm
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    Don’t give up is an important message. It is easy to just give up….just go with the flow…and accept the doc’s statements….your fingers don’t appear swollen, or muscle and toe cramps have nothing to do with RA, or fingers and feet feeling numb is to be expected….and then be told I do not have RA bad????? this is every thing my old rheumy had said to me, til I and my husband said enough! going to for my 3rd visit with new rheumy since beginning of yr, I have a list of new aches, new flare ups, new side effects, here’s hoping he believes, sympathizes, and accepts my pain as real… I have felt defeated, I have felt alone, I have felt embarrassed, I have felt shame for the worry this has caused my family…but I will not give up…I am celebrating my 16th yr cancer free…I am a survivor, I am a fighter, I am a voice to be reckoned with.

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    • April 8, 2013 at 3:17 pm
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      Dear Cindy,
      You are a most excellent warrior and thank you from the bottom of my heart for your sincere post.

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  • April 8, 2013 at 3:23 pm
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    WOW …this is really scarey stuff…..just had bloods come back R A POSITIVE……omg..

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    • April 8, 2013 at 5:39 pm
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      as Kerry told you Wendy, I know it might seem scary, but you can get through this. Try to take one symptom and one medicine and one doctor at a time. And never assume that any bad experience of someone else with any of those will be the same for you. Hopefully, it won’t.

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  • April 8, 2013 at 4:41 pm
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    I’m so tired of the Dr. saying that my labs show inflammation, but your joint aren’t red and swollen. It’s not as bad as you make it out to be. He also told me that he doesn’t believe in pain meds. I need to get off the prednisone and loose weight. Now wouldn’t that be nice! But prednisone is the only med that helps me be able to get up and care for myself. I tried his way and de erased the prednisone and increased the methotrexate, well I got sick as a dog. I did this for 6 weeks. My friends wanted to know where I was. I’ll tell you, I was sleeping, trying to deal with a major flare up. When I saw my Dr. I told him I was stopping the methotrexate and going make go my prednisone. He said why I am I coming to see him then. I’m so frustrated. I feel awful. I’m in pain. My labs all show high inflammation. But without red and swollen joint I am just not sick enough.

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  • April 8, 2013 at 5:02 pm
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    A very timely post !! Thank you Kelly. I really like Monica’s insightful reply, too.

    I have been preparing for my rheumatology appointment for the past several months. After reading the devastating conclusion of a rheumatologist called in for a consultation in ER, when I presented with severe symptoms due to side effects of medication – I knew I had to prepare !!

    Just a bit about my RA- My CRP and ESR are normal. Conspicuous swelling is not evident on recent clinical exams. My RF and CCP are positive and very high. Erosions and active inflammation were found during ultrasound when I was first diagnosed. My symptoms have been very debilitating. DESPITE all of this evidence, doctors have questioned if I even have RA.

    My way of preparing for medical appointments is two-fold. First and most importantly, my faith in God and desire to turn to Him is primary. I always pray for the doctors, for their office staff, for myself and to be in line with God’s will for me. Second, I’m a pretty smart cookie so I research and read voraciously. How to or not to present research information to doctors is a delicate task and I always ask God for guidance.

    I pray before opening my mouth to reply to questions being asked of me or questions I might have. I have also learned to see doctors as human beings who want to be acknowledged and appreciated for their training and skills (don’t we all want this?)

    My rheumatologist ordered a bone scan. The bone scan was a false negative- nothing showed up regarding inflammation. A power doppler ultrasound was ordered but the wait at the hospital for the test was 8 to 12 months. I worked out a fee arrangement with a private imaging company and paid for the ultrasound myself. The ultrasound results showed 10 erosions of the bones of hands and feet, 6 areas of synovial hypertrophy (swelling) and 3 areas of effusion (fluid filled cysts). The test was indisputable in showing that my RA is active and is progressing despite nothing being evident (swelling which seems so important to rheumatologists) on a joint count.

    After receiving these results, I put together a one page brief outline of all my symptomsand the clinical and imaging evidence that ties these symptoms to RA. I downloaded a RAPID3 form from the internet, completed it, scored it and turned-it in to my rheumatologist before meeting with him so as not to put him on the spot. I enclosed the journal article by Dr. Pincus, the author of the RAPID3 scale, that shows the validity and reliability of the RAPID3. I also photocopied the EULAR 2013 guidelines on the use of imaging in rheumatology that was published last month. I wrote a cover letter thanking the rheumatologist for his care and for ordering the ultrasound. I thanked him for valuing me as an active member of the medical team.

    The bottom-line is that I think highly enough of myself and my integrity to advocate in a non-confrontational, collaborative way. We do ourselves and everyone a disservice when we let our emotions get the better of us and lash out. I love Monica’s detailed description of how unfair it is that we have to advocate like this when we’re so ill.

    This disease is horrible, debilitating, frustrating and relentless. It is poorly understood. We have to do everything we can to not give up. I was encouraged by the scripture quote Kelly posted. It’s what we’re called to do, doesn’t matter if we like it or not.

    I could barely get out of my car after the two doctor appointments today. The emotional and physical toll of having to do all this advocacy work plus fight several diseases is indescribable. I had tears !! I’m also battling another infection and had treatment for that earlier today so am very tired.

    I have to say that we are all amazing. There isn’t a day that passes that I’m not incredibly grateful for rawarrior. The encouragement of one another, sharing our knowledge, and stories is simply invaluable.

    Here’s a link to the European League Against Rheumatism (EULAR) article published March 2013 with their expert recommendations about using imaging (MRI, ultrasound, bone scans) in the practice of rheumatology. It provides substantial credibility to using MRI, ultrasound or bone scans to track our disease in addition to joint counts. Personally, I think the use of advanced imaging should be the standard of care.

    http://ard.bmj.com/content/early/2013/03/20/annrheumdis-2012-203158.full.pdf+html

    DON’T GIVE UP !!!!!!!!

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    • April 17, 2013 at 10:16 am
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      An update: after all my efforts, the report I received from the doctor is all over the map. To a novice reader, it is unclear if the doctor is even convinced I have RA. Yet, there’s mention of the need for aggressive treatment and mention of several tests that are consistent with severe and active RA. I’ve made arrangements to see another rheumatologist and might even travel out of state to find a better fit if needed.

      I really don’t understand. Why is it so difficult for some rheumatologists to provide even adequate care or think outside the box? RA is such a complex disease and does not manifest the same in every person. I do understand there are potentially difficult facts about RA

      1. a significant percentage of people with RA are seronegative

      2. a large percentage of people with RA have normal CRP and ESR

      3. active inflammation is not always evident during a joint exam

      Despite these limitations, I know good rheumatologists do exist and they use the objective test results as well as clinical skills to provide excellent care. I’m looking forward to finding a better fit for myself. Many times I want to give up, but, I do look for ways to continue the fight and stay encouraged. It truly breaks my heart that thousands of people with RA have similar experiences of very poor medical care.

      Kelly, you’ve done such an amazing job in educating us, the public, and the medical community. Thank you for continuing to encourage everyone. You are a blessing to many.

      Reply
  • April 8, 2013 at 5:05 pm
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    HI, I woke up this morning and just cried because my body was aching and I feel really weak with RA and then I got on the computer while I drank my coffee and read your site and realise I need to suck it up because I am not in as bad a way as some other people and I need to stick with the tablets and diet that my naturopath has me on because many people get no help from their doctors and I am coping. Thanks for putting me into perspective.
    Cheers
    Kerry

    Reply
  • April 8, 2013 at 5:34 pm
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    To Wendy from UK – Try to stay positive. I know it’s scary and difficult to digest all this just after your initial diagnosis.
    Some of us RAers do respond well to treatment (MTX for me), have minimal side effects, and do have periods of time when the disease actually takes a back seat to life.
    Although I no longer work, many RAers do, and we don’t hear much from them..lol.. they’re workin! And if you’re lucky enough to see a truly good Rheumatologist, your journey will be better.
    Take the fear you feel and turn it into determination. And as Kelly says, “Don’t Give Up”!

    Reply
  • April 8, 2013 at 7:39 pm
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    I WISH I could give up fighting! 😉
    I wish I could just treat it with accupuncture, or herbal remedies or positive thinking or heat packs or betroot juice.
    I wish I’d gotten around to learning to salsa properly.
    I wish we’d had a second child BEFORE my rheumy put me on MTX without telling me I wouldn’t be able to conceive on it, and before I got so reliant on it that I can’t go without it.
    I wish I didn’t have RA even in my dreams.
    I wish I could have a beer every now and then. I’m even abstinent in my dreams!
    I wish a great many things…
    But I don’t have a choice. It’s take the drugs and put up with the side effects, or be confined to bed in agony for the rest of my life.
    So I’m not brave, or courageous, or determined or resilient. I’m just doing what I have to do, and trying to make the best of what’s left.
    Luckily, I do have a lot to be thankful for as well. When I’m on the meds, I can do most things – in moderation.
    I’ve got a great little familly, and I can still play music.

    So my advice then would be – do what you have to do, and enjoy all the positives that still exist.

    Good luck.

    Reply
  • April 8, 2013 at 7:56 pm
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    There are days that I feel I need to, need to set this burden down. But the burden will not let go; it’s my own self to drag around. So no, I don’t give up, mow matter how I might, the darkest before the morn? It’s going to be a heck of a light!

    It’s hard sometimes not to. I get that. I’m the same way. It helps to have someone to take care of you, to lean on. I know it’s hard on our caregivers but I cannot imagine what it would be like without my family. Or without this community.

    *gentle hugs all around*

    Jennifer

    Reply
  • April 8, 2013 at 9:28 pm
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    Why?

    Why is it so darned hard to get good medical care for this? Why do so many of us feel like we need a medical education ourselves to have even a prayer of a chance? Are there so few rheumys out there that the bad ones take 6 months to get appointments with, and the good ones don’t take new patients at all?

    Why all the distrust of patients? My new one, who I hope will become my old one quite soon, didn’t believe I had actually had knee surgery, as he couldn’t easily see 25-year-old scars from an arthroscopy. Did Dr. House’s motto, “everybody lies,” become gospel for this many M.D.s? Maybe many people do lie. I don’t. My joints hurt, lots of them, and many of them don’t move the way they ought. Why would I to lie to get the really cool, fun drugs like methotrexate? Liver failure, anyone? Hair loss, nausea, fatigue? Wacky blood counts? Prednisone, anybody? Weight gain, rising blood pressure, compromised adrenal system, constant heartburn? Yeah, sign me right up!

    I don’t want to give up. I want to halt what’s happening before it gets worse. I play the violin- if my left hand fingers start deforming like the right ones have, a big part of my life is over. When my new rheumatologist tells me to try going OFF the drugs I’m on and come back in 4 months, staying with him feels like giving up. And by the way, buddy, I really don’t plan to hit you up for some Oxycontin for my kids to take to school and sell, OK?? (Is that the hidden agenda for so many docs being so dismissive, especially of those of us who are, in their minds, atypical? Is RA used by drug-seekers?)

    None of us chose this. None of us want to give up, really. When I was in the middle of delivering my first child, I remember thinking that I’d really like to stop now, go home, and come finish this project another day. That’s where I’ve gotten to with whichever _A I have. Can I just not deal with it for awhile? Put it on the back burner? We know the answer, though. Until the baby is born, or until the disease is under better control, there’s no going home!

    Reply
    • April 8, 2013 at 9:38 pm
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      Excellent point, Anne. That’s the same line of thought I had yesterday as I wrote and I feel validated by you understanding it so well.

      And an important question. The answer is not simple, but I do think the biggest part is that many are trained with an inaccurate, inadequate understanding of the disease, which includes old theories related to hypochondriasis or somatization. Yes they are also trained to believe that some seek drugs as you said or perform “health seeking behaviors” in order to obtain “secondary gains” such as more attention or not having to work for a living. Of course all of these are offensive, but more so, they are not logical or scientifically sensible. They are easily disproven by spending a little time in our patient community reading what patients are actually dealing with.

      More ideas on why?

      Reply
      • April 8, 2013 at 10:17 pm
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        Very insightful post, Anne. Beautifully written from living the experience. Kelly’s reply uses some of the terms like hypochondrisis, somatization, health-seeking behaviors that are thrown around a lot. What I find incredibly sad is that there are studies funded and published by researchers about these ideas. Add centralized pain theory to the mix.

        Arthritis Today just had a FB post today about reducing pain. The study from Edwards (2009) is cited. He and colleagues involved in the study are respected scholars at John Hopkins. This study we’ve discussed before. It’s the one about how people with RA are more sensitized to pain so respond more readily to anything that might stimulate pain.

        So much of the literature on these theories is hogwash !! Truly. People need to start calling a spade-a-spade en mass. I’m grateful we have the collective voice of rawarrior to bring awareness of what RA is to the public. You summed it up beautifully, Anne.

        Reply
      • April 9, 2013 at 12:22 am
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        Remember the bad old days when asthma was thought to be an emotional disorder? Autism was caused by “refrigerator mothers” and my grandmother swore I would “catch your death of pneumonia” by going outside with wet hair. A few generations before Grandma, women were burned at the stake as witches if there were unexplained misfortunes in the community.

        People need to find reasons for things. If they can’t find a good one, they start making stuff up. You didn’t respond well to that fancy, expensive new Humira? Well, gee, maybe you aren’t really sick in the first place. You claim to hurt, but I don’t see red, swollen, and hot? You’re lying. You keep coming back to my office even though you say nothing I’ve done for you helps much? Must be coming for lack of anything more interesting to do. I think some of it comes back to magical thinking, too- you are sick because you are doing something wrong or bad, and if I live my life right, I won’t get what you have.

        Why men and women with M.D.s engage in any of this, I don’t understand. I’m still naive enough to think they’re in it for the healing and for the challenge of problem solving rather than for the BMWs. Autoimmune diseases are so poorly understood. If what I have doesn’t look and act like classic rheumatoid arthritis, it doesn’t mean I don’t have a problem Maybe it just means i have something you can’t easily name or identify. A doctor we used when our kids were small once told me that for every virus that is named, there are dozens more that aren’t. Just because the baby doesn’t have roseola doesn’t mean he isn’t rashy, feverish, and cranky. Not giving the baby ibuprofen and an oatmeal bath would be unthinkable. Not treating the adult patient? Seems to be more acceptable.

        Reply
        • April 17, 2013 at 10:45 am
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          Thank you, Anne. We all have to keep encouraging one another. I really like your insightful and caring post that shows empathy for people with RA and rheumatologists.

          I’m feeling particularly discouraged at the moment. Here’s a thought-I wonder why there is such a link between RA and depression? Could it be from feeling repeatedly demoralized by doctors who do everything they can to discount, minimize, disbelieve, and blame the patient? Add this to the effort it takes us to fight a chronic, debilitating, life-threatening disease and it is no wonder people feel blue.

          I really REALLY really wish rheumatologists could take something like sensitivity training to begin to grasp the devastating emotional toll it takes on people to not be believed even with good test results and clinical evidence. I can see the value in presenting role plays of simulated visits between patients and doctors where patients’ stories are repeatedly questioned.

          Something has to be done !!!! Truly….

          Reply
  • April 8, 2013 at 10:55 pm
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    Thanks for the Reminder not to give up and ALL your absolutely wonderful encouragement.
    I have HOPE!
    (Hold On Pain Ends)
    <3
    Hanging in and Holding on…

    Reply
  • April 8, 2013 at 11:03 pm
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    Thanks so much, Kelly, as always. “Never give up” was a great headline.
    I was a nurse for 30 years, and am very aware of the need to listen closely to patients and hear what they are saying, even if the labs and xrays don’t match the description. Always believe the patient.
    I love my rheumatologist. have a somewhat different ( but not so really different ) view of a rheumatology visit. My rheumatologist knows me well, for 10 years, and does not necessarily re-check labs or xrays often. But she believes everything I say!! And since I have had a normal sed rate even in the setting of misery and swollen stiff joints, I am so happy that she makes her decisions based on my report. At certain stages, the objective evidence is critical – but at other stages, the trusting relationship is even more important.

    Reply
  • April 9, 2013 at 12:25 am
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    Hi everyone!
    I could not find where to post any questions and apologize for asking here.
    I read this blog and have come away with more information than with anywhere else.
    I was diagnosed 3 yrs. ago months after my mom’s passing. How I didn’t get any signs before her death amazes me; running almost every day to see her which was about an hour and a half drive, visiting for hrs. And then the drive home…….
    I am on my second “specialist” and the jury is still out with my trust factor….
    The other night I watched a show on chronicle; it was about managing pain with marihuana. It came in drink form, mints, cream, cakes, candy, and, of course, smoking…..I am more interested in the cream form…..
    When I first got diagnosed my primary thought that it was Lyme disease.
    I was bed ridden for many weeks; the only place it didn’t hurt was my elbows which I was thankful; for, my elbows helped me get out of bed……
    I was on narcotics and then prednisone and I was suffering terribly.
    A friend of the family came over who knew how much i was hurting lit a joint and handed it to me; at first I was apprehensive but, at that point I would have tried anything….to my amazement it gave me an immediate relief……I did not care for the high but, the pain subsided to a degree of “functioning”
    I would love to hear from anyone who has knowledge about this. Chronicle gave me hope; not just for me, but for the many who suffer with pain. The show stated that there were no chemical additives; that it was a natural herb and, this too filled me with hope…….
    Could this be a miracle down the road for us? I suffer from fibromyalgia, sjohgans, trigeminal neuralgia, isophytes in the spine along with arthritis, carpal tunnel and scoliosis and would love to be able to delete the narcotics and prednisone….if anyone out there who knows about this or could point me in the right direction I would love to know more. The only things I’ve been reading seems to be advertisements for ordering….since its not federally legal it’s very hard to get medical advice from my doctors.
    Again I apologize for asking; I just didn’t know where to go without sounding like a drugee. Sometimes I feel alone with my pain and cannot “join in” with others who are enjoying life and all it’s goodness. This blog makes me feel I am not alone….
    Thank you for reading my question
    Sincerely,
    Robyne

    Reply
    • April 9, 2013 at 10:45 am
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      Marijuana is an amazing pain reliever. I wish the government and the states would pull their heads out of their lower posterior orifices and make it legal for medicinal purposes. There are so many different strains now, that address specific problems, some without the couch lock high (where all you want to do is just sit on the couch) — some make you feel energized and able to DO stuff.

      I’m just starting my journey on the RA road, and the biggest thing I wish right now is that I lived in one of the 18 states that have legalized medical marijuana… both for me and my husband, who’s suffered chronic pain himself for over 20 years…

      Reply
  • April 9, 2013 at 7:39 am
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    I read your post and I think back to the first rheumatologist that I saw who diagnosed OA and fibromyalgia without taking xrays and who told me that my fatigue and pain was a natural part of aging. Who didn’t hear me and didn’t treat me but whose reputation was excellent. Who told me that I couldn’t have RA because my labs were negative; that the cramps in my hands and legs were unrelated. Walking away from that office and finding a rheumy who listened and treated was the best thing I ever did! There are good rheumatologists out there. Keep looking!

    These are things I know from personal experience.

    RA happens without a positive serology.
    RA happens sometimes without significant swelling.
    RA causes muscle weakness and muscle cramps and stiffness.
    Symptoms are different patient to patient and a good doctor knows that.
    RA can start in your feet, or your shoulders, or your knees; it can come and go.
    The fatigue is debilitating.
    Early and agressive treatment can change the course of the disease and can prevent disability.

    For everyone out there,if your doctor isn’t treating your disease,find a good rheumatologist. Don’t give up; this is your life and you deserve to live it as well as you can.

    Kelly, Thanks for reminding us of that!

    Reply
    • April 9, 2013 at 7:53 am
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      Good summary Leslie. I know Eric and Kim know those things. But many don’t. I could never count the number of people whose first rheumatologist (or second or third) were like yours, and then eventually found a good doctor who treated them. And then they often responded to the meds, as you did.

      I often feel a twinge when I tell someone: “I believe you and that sounds terrible; now go find yourself a better doctor” because it’s easy to say but harder to do.
      I know it might be right around the corner, but it might also be hard – expensive, time-consuming, or humiliating. My book (the 2nd one I’m working on) will probably tell more of my experience, but I will say that ugliness from doctors who think you don’t look sick is hard to overcome.

      Reply
    • April 9, 2013 at 10:32 am
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      Leslie,

      Thanks for your comment. As Kelly stated, Kim and I are well aware of how RD “works” and how it presents itself. We, like you, have the personal experience that you stated. The reason I provided Kelly with the list of quotes was because it was our first visit with a brand new rheumatologist. We made the decision to leave Kim’s first rheumy when he looked at us and said, “I don’t know what to do for you.”

      With that said, we would love a new doctor. We have had several recommended to us through the Rheum community, including one who practices only an hour away and who is rated as one of the best rheumatologists in our state. But then there is reality. We only have two rheumatologists – the two Kim has seen – who are covered as tier one providers within our insurance. Going to another rheumy would drastically increase our already significant medical bills. Not to mention the time it would take. Not the time of seeing a new rheumy, but the time to get the first appointment. Three months? Six months? Who knows.

      So I agree with what you wrote and wish more than anything we could find a doctor who would listen, but at this time it’s just not possible. Instead, we continue to advocate for ourselves. We read and learn and teach ourselves about this disease. Then when we think the treatment course the rheumy recommends is wrong or insufficient, we push back. We provide him with information and tell him what treatments we want instead. Because it’s the only choice we have right now. And because we don’t want to give up.

      Reply
  • April 9, 2013 at 1:37 pm
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    In response to Lorri on Marijuana and how much it could help those of us with chronic pain…I agree. However, all I ever hear is smoking it. That seems to be the way it is perceived and then taken advantaged of. It could be made into a liquid or pill form and dispensed in prescriptions like our pain medications. Hopefully not expensive or covered by insurance. I know it helps with chemo. It is legal where I live but I don’t want to smoke anything and I don’t know how to take it safely if it was baked in a cookie or some other form. Doctors never mention it and I am almost afraid to ask.

    Reply
    • April 9, 2013 at 10:35 pm
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      There are lots of excellent resources for ingesting marijuana other than smoking it. One way that is highly regarded is vaporizing, or vaping. You can also do a Google search and find recipes for marijuana butter, which results in a solid fat product you can use to make brownies or whatever in place of the fat you’d normally use. Or you can just bake it in a brownie mix, or a regular cookie recipe. Just calibrate the amount of pot into the mix — say your mix makes a dozen brownies, add enough pot, finely ground, to make 12 doses, mix it well, bake and enjoy.

      Don’t be afraid to ask your doctor for a prescription.

      For those of us in states where it’s not legal, there is a pill called Marinol, but it’s next to impossible to get anyone to actually prescribe it for you. I’m not really at the point where I would get it, but I believe my husband is, and I wish he’d try it.

      Reply
  • April 9, 2013 at 3:28 pm
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    I am fortunate enough to have found a good doctor at the Cleveland Clinic who is competent and compassionate; However, reluctant to prescribe the pain meds that help. While my RA is controlled somewhat at the present, an equally big problem for me is interstitial cystitis (IC)–autoimmune too. This disease is just as horrible as RA and causes severe pain with nearly everything I eat! I’ve am struggling to keep weight on and am down to just 100 lbs. I read an article that said the quality of life of a person with IC is just as bad as the quality of life of a person with RA. I thought, well, what does that say about me? RA + IC basically means NO quality of life. Add to that: sjogren’s syndrome, hashimoto’s thyroiditis, fibromyalgia, autoimmune diabetes and chronic sciatica. Every single day is a tremendous struggle with pain and fatigue, and it takes everything in me just to keep going on. But I won’t give up! I am thankful for this site because it gives me so much support and hope when I feel like there is none. Thank you Kelly and others who have shared their stories.

    Reply
  • April 10, 2013 at 7:38 am
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    i have found a great ra doctor. The only problem is she is only there once a week. Ive been in bad pain on top of my foot for a few days so today i will call leave a message and hopefully someone will call me back. before i go see my ra doctor i write down awhole bunch of questions to be answered. im so forgetful since im on mtx for ra.

    Reply
    • April 17, 2013 at 9:04 am
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      Are there any Rhuemy’s out there that have RA? That’s the one I’d like to see. Especially if his/her tests were “NORMAL”

      Reply
      • April 17, 2013 at 9:18 am
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        Rebecca, I’ve heard of a few. It occurs to me that if it were severe enough to experience what many patients do, that a person could not function as a doctor for very long. I know I can’t do a fraction of what I did before & I’m not even considered that bad off. I’ve thought about this a few times, and that’s where I end up.

        Reply
        • April 22, 2013 at 8:25 pm
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          Kelly, Wouldn’t it be nice if , even a Rhuemy with RA that can’t practice would at least write articles for other Rhuemy’s to read, showing what this disease does to people. Mine seems to be struggling lately with listening to, and looking at me, and just reading the test results. She’s at least still treating me with MTX and CIMZIA, even though the last “Tests” were inconclusive. I feel your struggles daily, it is so hard losing life as I knew it. Hugs to you for this site, you help us all COPE.

          Reply
  • February 4, 2014 at 8:46 pm
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    My rheumatologist recently told me I must be experiencing “phantom pain”… because my blood results are indicating that I no longer have inflammation. Apparently this means my swollen hands, knees and ankles are figments of our imagination… Arrhh the frustration!!

    Reply
  • February 5, 2014 at 7:05 am
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    I have had some of the same issues with my “old” doc. Seems like nothing I was telling him entered his brain. I remember finally telling myself,”I am the patient”. So I searched for another doctor. I am so glad that I did. My new doc, Dr. Girl is understanding and actually listens to what I have to say not just what the test show. Dr. Girl has made a difference in my health and on my outlook to the future. Oh course there has been some set backs, but as we all know we will continue to have them for the rest of our lives. But for of those set backs, it makes me stronger and more determined to find more research and bring it up to my Dr. Girl. She listens and then we talk about our next course of action for helping cope with this disease. Thanks Anne

    Reply
  • February 18, 2014 at 12:45 pm
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    I wonder how many are using biologics successfully? My experience and that of so many others has been that methotrexate doesn’t work to really stem the disease progression but for many the biologics do!. They make you think metho treat is powerful but look at the progression in almost all who are on it… is that successful treatment? For many / most people biologics cause very significant improvement or complete remission and when one doesn’t work there are many others with more on the horizon. The key is to find a progressive & advanced doc who knows this & is willing to RX / justify to the insurance cos. why they are important to try… it takes time & staff for the doc to do the hoops and keep the meds coming to the patients but the results are often stunning!? Find a doc, no matter how far away, who approaches treatment this way & they can add a biologic! Are others getting access to them?

    Reply
  • April 8, 2014 at 1:23 am
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    Thank you for such a wonderful website Kelly! It is very important to know that people go through the same thing with doctors because sometimes doctors almost make you believe that you are imagining your RA. Before I’ve been diagnosed with RA I suffered from pain and extreme fatigue and the only thing I heard from doctors was: “It can not hurt everywhere at your age, you are too young”. Or even worse: “you should see a psychiatrist”. Anyway finally when it got really worse I was referred to see a rhem doc. And of course I was diagnosed with RA, I was 25 at that time. For almost 5 years now I fight every day. I was without treatment for 2 years because I moved to US and couldn’t find a good doctor. It was disappointing to wait for appointments for months and then hear that my blood test is fine, xrays are ok (but at the same time you can obviously see the deformation of my fingers and toes). Finally I found a good doctor who listened, acknowledged that I actually can have RA. I’m receiving treatment now again but untreated my RA got really bad. I not only have pain and typing right now through the pain but I started getting cold from every little wind, sneezing, sore throat, sinus inflammation. It lasts for the last half a year and I’m so very tired. But I won’t give up. Never give up. I have a wonderful husband who is so understandable that I guess it’s a reward for my living with RA. We really want to have children so it’s not time to give up. Thank you Kelly and everybody.

    Reply
  • July 13, 2014 at 5:29 am
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    I was diagnosed with RA in January 2013. I have been so frustrated…methotrexate, humira injections, plaquenil, arava medicine treatments didn’t work. I had Rituxan chemotherapy infusion and finally some relief for 2 blissful months. Then both my knees became inflamed for 5 weeks…more steroids…more chemotherapy after 4 months…my inflammation numbers went up during the infusion treatments. In the past year and a half, every large joint in my body has been affected…jaw, hips, shoulders, elbows, wrists, knees. My forearms have lost most their strength…my hands go numb…and my rheumatologist seems to have just given up. I just recently went to a neurologist who said well your neck, shoulders and elbows are inflamed and it is affecting your nerves but there is nothing I can do for you because you need to get the inflammation under control(silent screaming in my brain). Well meaning friends and family always are making comments not understanding the horrible pain I am suffering. Or they act like I am a hypochondriac because surely no one could be having all those problems. Sigh. Thank you for letting me vent.

    Reply
  • November 8, 2015 at 7:18 pm
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    Victoria I have ic and Ra also .
    Do you get bladder infections I just started when I hit menopause after having ic for 20 yrs .
    I’m in bed a lot and my RA dr needs help because of the continuous infections . My teeth have also started to loose the enamel .
    I’d love to hear from you and what the Drs in Cleveland do for Both conditions .mu email is haprestegard@gmail.com .
    I don’t hear of many people with both though I’ve tried to google it . I’m taking mtx I between uti . Helen x

    Reply
  • January 30, 2016 at 10:55 pm
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    Kelly,
    I am a healthy RA patient. I don’t exactly know why, but maybe I can give you and your readers some information and you all can see what makes me tick. I have severe RA. At least I did. I’m in 90% remission. I take Humira once weekly, Sulfazine 2000 mg a day, Methotrexate 8 pills weekly with Folic Acid 1 mg. daily. I’ve been on this regime for two years after having severe flares and on a trial of Embrel. Obviously, it did not work for me. I practice Tai Chi which helps me all around. It was recommended by physical therapy after I had my last appt. He said it would help with flexiblity, balance and stregnth/endurance. He was certainly right. I also practice Qi Gong. It’s a breathing exercise that also helps with flexibility. I swim daily one mile. It helps me a great deal with my lung health, flexibility, endurance and stamina. I walk two miles twice weekly. I also go to the gym six days a week. I do the Rower and the Treadmill. I also am learning to use the machines to help with upper body strength as it will help with swimming. I drink 8 glasses of water daily and eat “clean”. Lots of vegetables. I’m on a high protein, low fat and low carb meal plan. It helps me with weight loss. I lost 25 lbs. I have 25 more lbs to lose before I meat my weight goal. I am 65 years old and have always been thin. Fifteen years ago I developed a bad back. It turns out RA attacked my lumbar spine and from it I developed Spondylolisthesis. It is basically vertebra that shift at will spontaneously. I had all my lumbar disks bulging at one point, but between Tai Chi and swimming they receded into the vertebra. My Neurologist was surprised and said it’s not common. I guess I healed myself. How do I do all these things without having pain? I do have pain. Lots of it. On a scale of 1 to 10 my pain is between a 4 and a 7. I take an extended release Hydrocodone. Zohydro ER is the name of the drug. I see a pain specialist. I see him monthly to get a script and a follow up on my status. Yesterday I had a Radio Frequency Ablation procedure on my left side of my lumbar/sacral areas. It is a procedure that uses a probe to deliver electro-heat to the peripheral nerves of the vertebra. My nerves are permanently damaged from RA. It is my hope it will give me relief so that I do not need pain medicine or at least less of a dose. I don’t care much for the side effects of being on a pain med. It messes with my cognition and memory to some extent. Believe it or not, I’m so used to the med I can drive without a problem. It doesn’t interfere with my ability to exercise either. Thank goodness! Anyway, this is my bio. I hope this helps some people that think RA can’t be beat. I do the best I can. Is it perfect? No. Am I happy? Yes!! I am a very happy and content person. I make it my choice to be a positive minded person and not complain. Complaining makes me feel sad and unhappy. So, I choose not to do it. Please message me any time. I don’t have a blog, but you can reach me on Facebook. Elona Wagner is my name. I’ll be pleased to answer any questions you have. I love company 🙂

    Reply
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