Friday, August 12, 2011

Curiosity Killed the Cat: Painful Questions

I have always been fascinated by anatomy. In high school A & P we learned about body systems, the way biological creatures are constructed, their parts fitting together in an impossible and organic puzzle. We dissected numerous critters, labeling and memorizing organs, muscles, joints, and veins.  I'd often look at my end-of-the-course subject (a large tom cat) and wonder about where the biological supply company got him, was he euthanized properly, did he feel pain?  I wondered if animals feel pain the way we do. I'd had enough brushes with injury, a massive surgery for a destroyed knee, to know what terrible pain felt like. 

Until RA schooled me.


It is relentless. It permeates sleep.The inability to sleep impairs your entire body; no rest, and nothing is simple: sitting up, standing out of bed, walking, crawling, grasping, moving, stretching, breathing.  All of it.

"Did someone clip a ligament with meat shears when I was sleeping?"

 "The shooting  pain in my left wrist when I stretch my arm feels like the joint was crushed with a ball hammer."

 "My knees take me back to the hospital recovery, the suction and incisions and sewing of torn flesh."

When I had that pre-RA surgery, I made friends with morphine. Today I am not recovering from a surgery that will make me stronger, but I still own the pain. NSAIDS don't like me, so I have only Tylenol to keep me company.

RA is vast. I am rookie, still navigating the pitfalls. There are days where I feel confident in my understanding, and others I feel I'll never know enough. I have seen my rheumatologist a total of 3 times since December. We really don't know each other well, but we both know RA, albeit two sides of the same coin.

As a newbie, pain wasn't something I thought to discuss. Now I have more questions than answers.
  • Should doctors and patients discuss pain options within the first year? Within those first three visits?
  • What if a patient isn't feeling particularly pained yet? Is it wise to wait and play catch-up with drugs?
  • What about a patient education classes or an elective support group for pain management?
I don't know the first thing about asking my doctor about pain management.
  • How do you broach that subject?
  • What do you do if the doctor brushes you off?
  • Is it the rheumatologist's job to help treat you because of RA pain, or would you be sent to a pain specialist?
  • What alternatives to drugs are there for pain management? 
As a rookie I pay attention to peoples' stories, and I remember the good and bad. I hear stories of folks burning themselves out on their RA options, and developing issues with the pain management aspect of the disease. How much, or at all, should this impact your own decisions with managing pain? (What I know for sure is that each patient is different, I believe the important thing is to know your own body). Somehow that answer isn't cut and dry enough for me. But what about RA is clean?

This one of those times where you look up that slippery slope and wonder what else do I have to learn?
 
Despite wading through all this muck, I am still interested in anatomy. Now on the other side, feeling more like a dissection candidate than not, I wonder how my brain is processing the impulses my pinched nerves are sending out. Why does it hurt more when I stretch my left wrist and arm a certain way? Is there a way to calm the brain and nervous system down, the way that doctors work with mirror therapy and patients with phantom limb pain? I know pain is an important message to avoid further injury, but for those of us with the daily chronic kind, I often wonder how ramped up our systems are. 

Perhaps at my next appointment, I will mention how my pain levels went through the roof when I started Methotrexate. That can be a jumping off point.

What relief methods have worked for you? Are there alternative therapies that were successful for you? What about medication? Please share your story so others can learn from you. I am one rookie who started a blog about this illness, but for every me out there, how many others are young and scared and not speaking up?
In this case I think curiosity is a good thing. Ask questions. Ask away.

12 comments:

  1. For me, what works, is babying those joints that hurt, and when I'm in a flare, to rest, rest like it is as necessary as chemo to a cancer patient.

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  2. What defines a flare for you Joan?

    I have been in a flare since the onset of my disease, marked by periods (a day or week) of some relief and then ramping up again. Would this whole experience be considered a flare? Or is it a series of mini-flares and remissions?

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  3. You have hit on a hot button of mine. I don't believe that ra docs even address the pain issue of ra and most often we are left to waddle in it way too long. They are so quick to remind us, convince us, even scold us on the importance of DMRADS for the fear of loosing the use of our joints permanently but they never seem to speak of the pain part. Talk with your doctor. Explain candidly how you can not function and be specific: I can not brush my teeth due to my ra pain, I can not open doors, I can not drive because I can not turn the key, etc. etc. If you are working explain the importance of keeping your job and how the pain of your ra is impedding your daily performance on the job and you under no circumstances want to nor can you give up your job. Now onto the pain meds. Most ra docs are willing to write prescriptions for ultram/tramadol generic version as it is not considered a narcotic pain medication. Other doctors will try to convince you that if you take an antidepressant that it will work like pain medications (never worked for me personally), and others will refer you to a pain management specialist who will write you narcotic pain prescriptions after a complete evaluation. In your case it sounds like you need more then methotrexate if that is all you are currently doing and a pain prescription. I have tried many pain meds but am allergic to them all except ultram and that is why I am left only with that one. But please do talk with your ra doc. And if your doctor isn't compassionate and willing to work with you on the pain management part...then change doctors (ra docs) while you are getting a referral to a pain management specialist. You should not have to suffer like this and it just sooooo angers me because I have heard this story hundreds if not thousands of times over in the past 13 years of my own journey. Be strong, be empowered and get the help you need!

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  4. What an eloquent post.

    First, I think that you should be talking to your rheumatologist about pain and how to handle it from the very first visit. After all, you wouldn't be seeing that specialist if you didn't have RA, and the main symptom of the disease is pain that varies in intensity. While slowing the joint damaging progression of the disease is important, what's more important is the attempt to control the pain it causes, since that affects every aspect of our lives--and not for the better.

    For me, a "flare" is when I experience pain and some level of disability in one or more joints. My flares are frustratingly variable, in that today's pain in the knuckles of my right hand is mild, not really impairing me but annoying, but yesterday's flare was in my left knee, and it was so painful that not only could I not bear to walk on it, I couldn't bear even the lightest of touch to the skin over the joint. Another way in which they're variable is in the amount of time they last. One may last for an hour or two; another might last for four days. At the moment, my hands have been flaring, mildly, for close to two years. Occasionally the hand-flare ramps up and causes more intense pain and impairment. I really never know what to expect.

    It's for that reason you really must talk candidly to your rheumatologist about the pain you're experiencing. If he/she won't address ways to handle it, be they through physical therapy, meditation, or narcotic analgesics, then you must find another rheumatologist.

    RA is a serious disease. The pain it causes, left untreated, can wreak havoc in your life. You might lose your job, or a spouse, or find yourself isolated and suffering. You don't have to suffer like that. There ARE ways to cope with this pain. Please talk to your rheumatologist.

    All that said, here's wishing you gentle warmth and comfort, and may you feel joy from the small gifts life offers. Walk in peace, Sunshine.

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  5. Deb,
    Thanks for sharing your insight. What you have to offer may help other newbies make some important decisions regarding their treatment.
    I am on Prednisone, Methotrexate, and Humira. The MTX was a recent addition and seems to be helping somewhat. But I may need to switch biologics.
    I absolutely will talk about the wrist pain impeding some of the things I have to do for work. That's a great way to reframe the thought.
    I always appreciate your comments. Thank you!

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  6. Wren,
    You are absolutely right about pain affecting every part of our lives. Is there a time that pain is ever a good thing? Has it taught us anything about life, other than to appreciate a good day? I think on that often, haven't discovered the good there.
    Thank you for sharing information about flares. You hear that word tossed around a lot. To some patients it seems to imply active disease. To others who live with constant activity, it seems to imply periods of increased pain and fatigue, sometimes in specific areas of the body.
    Based off of your information, discussions with others, and my doctor, I've been having a non-stop flare since my disease onset a year ago.
    As always, thanks for sharing your perspective. This can help others who are reading! : )

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  7. Hi Sunshine, or may I call you Fierce? :)

    Great, thought-provoking writing!

    It sounds like we may be similar in regards to time since RA onset. I was diagnosed with Severe RA in Dec. 2010. I've been living with it since end of May 2010 -- a little over a year.

    I appreciated reading everyone's helpful comments and suggestions. I have recently switched Rheumatologists because my previous Doctor retired to become a Professor of Rheumatology for a prestigious school. I am still finding out what is working and what needs to be changed, both for my own regimen, as well as the dynamic with my new specialist.

    Wishing you well!

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  8. Thanks Thrive!
    For the record you can call me either.

    Yup, sounds like we have a common timeline. Still trying to weigh what works and doesn't. Methotrexate hasn't restored total mobility, but I am doing better on it than not. It's a start!

    Good luck with your new doc and thanks for posting!

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  9. Thanks for this provactive post! And the most key point for anyone diagnosed with RA, too: ask.

    Pain management isn't needed for all RA patients so most rheumatologists don't bring it up. Two reasons it might not be needed: 1) Some patients respond well to disease treatment so their pain level is more tolerable. 2) Some patients have symptoms that are more periodic or only in a few joints, which again makes their situation a bit more tolerable. Continuous flare that some have (sounds like, at least lately, that's you) is more likely to require pain management of some kind.

    I can't say for sure, but the methotrexate question you mention might be answered here: http://rawarrior.com/rheumatoid-arthritis-rheumors-2-mysteries-solved/ You could ask the doc about it.

    See you on Twitter. ;)

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  10. I'd like to try acupuncture and massage therapy.

    Pain is awful and just plain sucks.

    I'm amazed how quickly the pain and fatigue can come on. I can feel normal (normal for me, which is still sore & tired) and then three hours later I'm feeling like I'm going to collapse from a combination of the lack of energy and intense pain.

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  11. Great post! Acupuncture is the only thing that gives my husband complete relief from his Psoriatic Arthritis pain. Some medications like hydrocodone and Lyrica help him. I hope you find what works for you!

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  12. What has helped my pain??? It's different all the time. I wish I could find just one answer to that question. First, I'd say prednisone. Then I'd add chair yoga with an arthritis specialist instructor and water exercise. Still there are days I can hardly breathe for the pain and nights I just sob. I have a friend who swears by a vegetarian diet. Acupuncture helped a bit before my dx, when I just didn't know why my body hurt so much. Unfortunately, I think this is like the meds, you just have to try it and see what will work for you.

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