Two Types of Progress & Shared Responsibility

Whoever decided that RA “progressing” means it gets worse probably didn’t have RA.

RA progress is always bad

umbrellaI have a new symptom in both my hands today. When I try to hold onto something firmly, my hands cramp in pain and contort to an odd position. And I drop the whatever. This morning, it was an umbrella.

My feet have done this for years, but I’m not usually trying to hold an umbrella with them.

The foot cramping increased a lot over the last couple of years so I asked the Dr. Smart Rheum about it last year. Doc said, “We see that in a lot of our RA patients. There’s nothing that helps it.”

Tonight I had to color my hair. Kim, the super-hero hair dresser, has been out sick, busy with her new baby, and too much in demand. My fingers were pretty angry about my persistence to get this accomplished. This new symptom is going to progress from annoying to exasperating very quickly.

Meanwhile, a different kind of progress is made

While I was fighting with my hands about my hair, I entertained my brain by listening to a British Medical Journal podcast about “Shared decision making” in healthcare. It was electrifying to hear experts debate the most effective ways to involve patients in decisions about their health. In Part 3, ePatient Dave deBronkart used me and my “Mother of a Patient Voice” illustration. It was cool to hear my name, but all three podcasts were intriguing.

The discussion was sparked by the Salzburg Statement, a call to action by 58 experts from 18 countries. Check out the ePatients.net post explaining the Salzburg Statement on Shared Decision Making: “The pivotal distinction here is the difference between informed consent, in which the physician assesses the options and selects one, and gets your consent to do it; and informed choice, in which clinicians tell you the options, with all the pros and cons, and let you choose, based on your preferences.”

NOTE: Some of you on Facebook or Twitter listened with me yesterday (Monday) to the live broadcasts from the Netherlands of the TEDxMaastricht international conference on the future of health. American e-patient advocate Dave deBronkart spoke around the theme “Let Patients Help,” using RA Warrior’s bone scan as an example. I’ll add the link here to the video when it’s available. Don’t miss it – Dave raps!

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

20 thoughts on “Two Types of Progress & Shared Responsibility

  • April 6, 2011 at 7:25 am
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    Thank you for the wonderful information! I found this post fascinating and very “ahead” of the curve! You are dong a fantastic job of keeping us involved, informed and feeling better about our disease(s) and our choices.

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    • April 6, 2011 at 8:25 am
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      Thank YOU for the encouragement Murph. Isn’t that great stuff?

      Reply
  • April 6, 2011 at 8:28 am
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    Kelly My hands and feet have been cramping for a long time now! My doctor said i should take Cymbalta. Well i fought it for a year.Didnt want another pill! Finally i couldnt take it anymore.So i took the pill and in a few days all that cramping stopped! So your doc. didnt know or wasnt being honest with you! Side effects..I gained 25 lbs! Bummer! I have a question for you. With you just traveling and me also..How do you do it? It kills me to fly and im so worn out when i get there! Any helpfull hints..thanks as always Judi

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    • April 6, 2011 at 8:40 am
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      We made a list of travel tips, but I don’t think there’s a cure for the RA fatigue that gets multiplied when we try to do more. All I can tell us both is to try to force schedule rest! I need it now. LOL.

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    • April 6, 2011 at 9:51 am
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      This is my 2nd time on Cymbalta. The first was for my depression before I got pregnant 5 yrs ago. Of course, I got off it because of pregnancy. I experienced more weight gain with MTX. Since I started the cymbalta, I’ve actually lost inches. The Cymbalta now, is for my depression and fibromyalgia pain (which it is helping both).

      I, too, recently returned from a trip to California. I left on a Saturday and returned on a Tuesday. With the stress of flying, the funeral I traveled for and some family issues, by the time I got home, I was very exhausted. I was able to relax and recooperate a little.

      One thing that “hit” me like a brick wall was a realization as to why we are fatigued. Our bodies are fighting a huge, unseen war on a constant basis. When people have an infection, there body tells them to rest because it is fighting to kill the bacteria. Sadly, there is really nothing for our body to kill, but it doesn’t know that, so it continues to fight. Then you add our daily “routine” or what used to be a routine to it, we tired out faster. I’m sure I didn’t articulate that well, because I’m fighting to keep my eyes open today.

      <3 and hugs
      K

      Reply
  • April 6, 2011 at 9:14 am
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    I’ve also been getting cramps. I thought it was related to the problem I have of having to repeat Potassium level blood tests quite often. At regular tests, potassium reads elevated but, when repeated, they seem to go back to normal.

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    • April 6, 2011 at 10:08 am
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      I did ask about potassium or magnesium, but was told it won’t help. I still eat my bananas & kiwis though. 🙂

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  • April 6, 2011 at 9:15 am
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    I have had hand cramping for years but only had an arthritis diagnosis for a year or so. Looking back it was a clear sign that something was wrong years ago but it was far less often than it is now and I guess I just thought I had weak hands or something and avoided activities that triggered it. With my feet it is only getting dramatically worse now but have had it on and off for years and just figured that it was because I have broad feet and they didn’t like shoes. Gosh I feel silly writing it out like that but it just took a long time for there to be enough consistent symptoms to make it clear something was really wrong. I’ve heard people use hot wax baths or something for their hand cramping. Haven’t tried it myself.

    I’m lucky in that I have a Rheum who always discusses options with me and factors in other aspects of my life into decisions about treatment but I think it is a learning curve to become your own healthcare advocate. Some docs won’t start interacting with the idea of true informed consent until their patients demand it (if ever).

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  • April 6, 2011 at 9:43 am
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    Kelly, my new rheum tells me the options available, with the pros/cons and lets me decide how to procede. She hasn’t discouraged me yet. I like feeling that I’m PART of my treatment, not just the subject of a treatment trial.

    As for the cramping…This is weird. Since I first started feeling my condition/disease take hold, before I even knew what it was, I had dreams where I’d be holding something, and I’d lose my grip either because of my muscles giving out or because of pain. After those dreams, I’d always wake up with my hands feeling so much pain. I also noticed that when I “over used” my hands, a couple of my fingers would lock straight. I’d have to have my husband (or do this myself) gently bend my fingers at the joints to get my fingers/hands working again. Not until today, did I realize it could be anything dealing with RA.

    And I think it’s cool you were mentioned in a podcast, too 🙂

    K

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    • April 6, 2011 at 10:07 am
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      I bet it is related to the locking. I had locking up before too. Fun stuff. 😛

      Reply
  • April 6, 2011 at 9:52 am
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    Hi my dear friend,
    I too have had cramping of my hands and toes. This morning I was swimming and my toes cramped. I have had the fingers contort. You just have to wait until they relax. Crazy thing!
    I wonder why that happens with Ra patients. Is it the meds we take or is it part of Ra??
    Keep up the good work. God knew what he was doing when he hired you!!
    Steph

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    • April 6, 2011 at 10:07 am
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      Yes, Steph – swimming would always cause it for me too. I thought it was the water temp. I don’t think it’s medicine since mine (med) has changed so many times & the cramping didn’t change. I seems to be in the muscles or tendons.

      Reply
  • April 6, 2011 at 10:08 am
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    Kelly,

    As a lurker I don’t generally comment but my dr found that my B 12 levels were way too low and recommended B12 1000 MCG twice a day. Before I started the cramping was excruciating, after starting within about a month it became much better. I’ve had RA since before I turned 30 and am now 58. Things have certainly improved from the old days of take an asprin and all will be well.

    Elizabeth Bryant

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  • April 6, 2011 at 3:35 pm
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    I think trying new things to stop the progression has been helping me. There are ways to help your body with the pain naturally. Gluten free and green smoothies ( use your blender , 1 cup of water, green leaf such as Kale and mix with your favorite kind of apple, pineapple, dark grapes…have made such a big difference. I have been taking collegen too. What a big difference it has made for my body. I was starting to lose all my abilities to move. Now, I have been able to do so much more. I still have problems with two of my fingers. I need to be positive. I know things will be better soon!

    Keep away from tomatoes, potatoes,carrots, milk, gluten products, and corn red meat and pork products.
    Exercise.

    Good Luck!!!!

    Reply
  • April 6, 2011 at 8:15 pm
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    Hi Kelly – Been having lots of work (good) as well as increased pain, swelling and fatigue (flare! – bad!) so I’ve been too busy and/or wiped-out to do much other than work and sleep.

    I also have cramping in my hands and feet – hands recently got worse, feet have had nasty cramping since long before my RA was diagnosed, but since they cramp worse during flaring, I suspect it was RA that long ago. I’m having the same problem with my fingers getting cramped into a strange position – straight or contorted – and painful.

    This goes along with having to reduce my Plaquenil dose in half because of tinnitus. The tinnitus is almost gone, but my RA is worse – definitively worse. I’ll have to talk to the rheum about it.

    So, how goes your search for a new rheum? Prayers are with you, Kelly-beloved-of-Christ.
    Love
    Elizabeth

    Reply
  • April 7, 2011 at 7:33 am
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    I was getting cramping in my hands before I started on plaquenil, now it’s gone -yea! I did have it with the last flare. I’m guessing it has something to do with the muscles and tendons and RA when the inflamation is more active.

    Any luck with a new rheumy?

    Reply
  • April 7, 2011 at 9:46 am
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    Hi Kelly,
    I’m newly diagnosed as an RA sufferer, just this week in fact. I’m 45, from Sydney, Australia.

    I’ve had my symptoms for most of this year, but I’m told I’ve always been kind of ‘sensitive’ in the wrist and ankle areas. I had the wrist cramps 2 weekends in a row, not nice at all, but have since ceased.

    I’m starting my first lot of meds tomorrow…so even though I’ve been reading a lot about RA and your site is so very helpful (and funny too!) It’s still a shock to me to be told that I do actually have RA.

    I lost my beloved Mum last year, but she was never a sufferer of it. I guess the stress of that has turned inwards, which comes as no surprise to me.

    Keep up the great work Kelly and much strength and continued support to you and all that you do for others on here. Take care.

    Reply
  • April 7, 2011 at 9:55 pm
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    Kelly,
    I feel so bad about your recent hand cramps. I was diagnosed with RA Jul 2009 at 44 yo. I have had flares in my wrist, should, hip, knee, hands, and feet. I like the feeling of walking on marbles. Fingers that snap into place. Constant stiff hands and pain, especially in the morning. Flares that just keep coming every few weeks.
    I have been using a synthetic cannabinoid (JWH-018) since Oct 2010, and since that time I have had no flares and my regular pain has diminished to where I don’t have to take pain medication. My symptoms have greatly diminished.
    I read cannabis might be useful for RA. Since I did not want to break the law (my state outlaws medical cannabis) I found this substance. I have never used cannabis before but I figured I would try this. It also helps me to sleep. I used to wake up in pain and have broken sleep, not any more. The side effects are that it can make you very high for about 90 minutes.
    So just my luck, the DEA has emergency scheduled JWH-018 as a schedule 1 substance in March 2011. Schedule 1 = NO MEDICAL VALUE! Unbelievable, they quashed further research into these compounds by bureaucratic decree. Luckily many other (400+) JWH compounds are still available and probably useful for RA treatment.
    I think this substance works by preventing inflammation from starting and not by direct pain relief. The worst part about RA is the effects it has on one’s psyche. Also no one around understands what it is like to experience unrelenting pain for an extended period of time.
    Sorry for the anon post but I need to protect myself given the legal status of the compound.
    RA_Survivor_Guy

    Reply
  • April 11, 2011 at 10:53 pm
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    I seem to experience feet cramping the minute they hit the bed at night. My hands
    are starting to do the same this week. I am experiencing a flare after being at
    the point of remission. (What ever that means….never have had elevated labs
    except RF and CCP.) However, with my flares, I have obvious swelling, tendonitis,
    and synovitis. Was down to lowest of steroids in three years, now up to the
    highest dose. I have a new respect for chronic pain and how patients respond to
    it. Love your website! I hear alot about maybe my pain would be better if I
    would add another antidepressent, or…”it’s just RA.” But for me it is a total
    life change with so much uncertainty with my job, my life, my family, and what I
    thought would be the decreased stress time of my life…..LOL!!!

    Reply

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