Thursday, August 18, 2011

Lupus Hurts.


           I was once asked by a well-meaning but ill-informed gentleman if lupus causes pain. Restraining my initial urge to laugh hysterically, I calmly confirmed that, yes, lupus is indeed painful. It’s something I don’t like to talk about. As a matter of fact, I hesitated for a long time before writing this post. I worried that the topic might come across as whining, rather than as presenting information about systemic lupus. But the fact is that pain is an intrinsic part of lupus. Most lupus patients experience chronic, grinding, wearing pain. It’s just part of our daily life. Because we want to avoid sounding like whiners, we try to hide the pain, pretend it’s not there, or make light of it. It is therefore understandable that even many close friends and family members “don’t get it.”

            Lupus hurts. It hurts a lot. If you’ve ever sprained or strained a joint, you know what kind of pain accompanies injured soft tissue. The pain from a sprain/strain comes largely from the inflammation that occurs around the site of  injury. The pain associated with such inflammation is the body’s way of saying, “Ok, moron. Stop trying to run with a sprained ankle!” Inflammation is supposed to help the joint to heal and prevent the injured person from injuring it further. It makes sense, as uncomfortable as it might be at the time.

Unfortunately, those of us with lupus have inflammation all of the time, unless or until our disease goes into remission. Even worse, the inflammation is systemic, rather than localized on a single site of injury. So if you think back to the pain of your sprain, and imagine that every single joint in your body hurts that much most of the time… well, then you start to get a picture for what everyday life is for lupus patients. It hurts. And don’t forget that there are non-traditional joints, like the ribs and their supporting connective tissue, which can also be inflamed. 

            Unfortunately, pain caused by lupus isn’t confined to joints. Lupus arthritis is a very common symptom of systemic lupus, but the fun doesn’t stop there. Since every organ and system can be impacted by lupus, there are an awful lot of ways the disease can cause pain. Like everything else about lupus, the level of pain on any given day is unpredictable and may vary significantly. So there are good days, but there are also very, very bad days. We don’t get to pick which days are good and which days are bad. While it is frustrating for those around us to deal with the unpredictable nature of lupus, please know that it’s even more frustrating for us. We don’t like canceling plans at the last minute, suddenly changing our minds, etc. But we are at the mercy of a disease that is not particularly merciful.

            As I said at the beginning of this post, I am not soliciting for pity. I don't like complaining, I don’t like people to feel sorry for me, and I really don’t like to be held up as either a positive or a negative example for others. It bothers me when people say that I must be a strong person to work through constant health problems. The fact is, I don’t have a choice. I have lupus. I am not, unfortunately, independently wealthy. Therefore, I am sick, I am in pain, and I must work anyway. It’s that simple.
            

27 comments:

  1. TELL IT LIKE IT IS SAM IF THEY ONLEY EXCUSE ME F..KING NEW PEOPLE JUST DONT GET IT YOU HAVE TO LAUGH WE ARE VERRY LUCKEY TO HAVE YOU GOD BLESS SHARON

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  2. Sam thank you for writing this, I agree a sprained body is a good description!

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  3. It's not just an analogy... most of the pain in a sprain doesn't come from the tendon/ligament/whatever itself, but the inflamed tissues around it. I realized this when someone was complaining about a sports injury, and I found myself thinking a) I should be so lucky as to have sports injuries or b) I should be so lucky as to only have one joint that hurt!

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  4. this is a great post.Ty for sharing!.People really dont understand the amount of pain we go through everday...unfortunately they would have to be thrown down a flight of stairs to understand how much pain were in.

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  5. The next doctor who says, "Wow, you're in a lot of pain," as if I were somehow unaware of that fact may get a chance to be in a lot of pain him/herself. :)

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  6. Sam, this is a huge reality check for me. I have had pain for so many years, that I've gone into denial on how it effects my entire life. I could never even begin to explain how people with lupus, deny, avoid, hide, disguise, and when "forced to cancel a planned event, it's just easier, to say... "I have the flu"..

    Well said.. Sam Vickie

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  7. Have followed to your post through a friend. I couldn't agree with you more, what an excellent (sadly) post. Thankfully for me, morphine works well and pain is mostly manageable. Love to you and everyone else going through this. Anne xx

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  8. Sam this is an Excellent explanation. Most think its all in your head or you are imagining your pain and have mental issues. Many people are ignorant about what a Lupus patient goes through. My life has been altered because of Lupus but I have chose to take a different road and work with it and manage my life and for once putting me first, which has been hard for years.

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  9. I was *extremely* lucky because I was diagnosed when I was 19. That meant I was able to pick a field that was more lupus-friendly very early on.

    The thing that bothers me the most is that physicians turn to the "it's a mental thing" explanation whenever they don't have an answer. That's totally unacceptable, in my book. I've also found that rheumatologists like to lump all pain that they can't treat into the "fibro" category. That's not to say that fibro isn't a real problem (I've got it myself), but it's used as a cop-out way too often, in my opinion.

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  10. Once again Sam you hit the nail on the head, ...thank you

    Keely LH

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  11. Thanks, Keely! I've been astonished at the amount of (positive, thank goodness) feedback I've gotten from this post. It seems to have struck a nerve with a lot of people. I'm very glad that people have found my writing helpful!

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  12. Hi Sam what you said in your post is so true. I don't want to sound like a whiner, I don't want pity, I do want understanding, but most of the time I don't. I don't care to constantly rehash what I am going through at whatever time, so I have learned to live just sucking it up as much as possible. When I can't hide it and I am flaring really bad, then people seem to get it when it lands me in the emergency. Why do we have to end up in the hospital before friends and family get it? Maybe because it is a recognized professional's response to our issue and not our own? Are they sick of hearing it from us? Or is it just so unbelievable to believe coming from someone who might look so well on the outside? I have a hard time keeping it together when people are so ignorant they think they know what lupus is better than we do, and also try to minimize the disease. I have learned to walk away from those people. Thanks Sam

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  13. WONDERFUL POST SAM, SO WELL PUT THANKS FOR TAKING THE TIME AND EFFORT TO HELP ALL OF US!!

    PAUL MURRAY

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  14. It's interesting to me how there are certain buzz-words that will cause people to suddenly take you seriously. People reacted much more strongly to my cancer diagnosis than to my lupus, even though the lupus is far and away the more serious of the two (in my case). I think it comes down to education. People know what "cancer," "chemo," or other such terms mean, but are hazy about what "lupus" or "autoimmune" mean.

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  15. I recently was diagnosed with lupus. Like you, I just grit my teeth through the aching & pain parts. A week ago, I tripped over a chair in the dark, half- asleep, & the swelling & pain the next few days just shocked me. A day or so ago I was accidentally whacked in the face. It wasn't even a hard hit, just a jarring thing- that night, the pain was EXCRUCIATING. I couldn't believe that it hurt more than the last time I had surgery. It was like the nerves or whatever in my face/near my nose just went crazy. I couldn't sleep because I would roll over on my side and the epic pain would wake me up gasping. This morning, my face is slightly swollen on one side and it HURTS. In summary, I loved your post- yeah, I occasionally try to explain to my friends how much lupus can make you ache and hurt, but last night was an eye opener. Like you, I work through everything, but sometimes I can't help shaking my head when people I know sprain their finger, or bruise their leg, & complain solidly for a week. if only they knew! Keep up the great blogging :)

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  16. Sorry, I've been in a bad flare and haven't been a good blogger recently! Stupid lupus and its stupid pleuritis. So sorry to hear that you have also been experiencing the ridiculously exaggerated pain of lupus, and I hope things are better for you!

    I have to confess that I had a hard time not smacking a coworker upside the head as she whined about the increeeeeedible cost of a procedure she might have to have done because of a sports injury. I managed to be polite and non-violent, but man, she picked the wrong person to complain to! So I totally know what you mean there!

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  17. Sam, thank you for your blog! I've been dealing with lupus for 5 years. I have not wanted to join in any conversations about lupus because I am trying to stay positive -- well actually it's because I am trying to stick my head in the sand and pretend it's not happening. Ha! Your blog is the first dialogue that I have appreciated. You are definitely NOT a whiner! :) I love your no-nonsense, matter-of-fact approach. You are very informative and it helps to have all this explained by someone -- anyone -- since the docs don't explain much of anything. Bravo! I love your comment about doctors blaming fibro for all pain -- ugh! And I love your point that it's hard to keep cancelling with people because the lupus pain is screaming particularly loud that day, or because of fever and fatigue, or because... I wish people understood just how horrible it is to deal with a chronic -- ch-ro-nic -- and painful disease like lupus.

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    1. I'm so glad to have been able to help. Today's episode of "My Life with Lupus" includes waking up for the much-anticipated, major-event-of-the-year trip to DC with the green monster (sinus/chest infection). Guess who'll be spending her day getting tested at the hospital instead of meeting with staffers on Capitol hill? *$&@.

      My rheumatologist is such a firm believer in fibromyalgia's being the source of all that is painful that she actually rang my primary care provider and yelled at him for giving me any painkillers at all. Seriously, lady? That's a whole new kind of special.

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    2. Why don't you get a new rheumatologist? If mine would have done that, she would have been history! Come on, your a smart lady.

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    3. Well...eventually I did. By moving to Alaska.

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  18. Thank you for yourblog. I've only just found it when searching for "chemo for lupus patients" since I just found I may have to take it. I am also in the DC area & just switched rheumatologists because mine started forgetting why I was there and talking to me like I'm an idiot. He actually said "your test results are less normal than last time." I digress... thanks for your blog, I will be back to read more.

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    1. I should add that to the "Stupid Things Physicians Say" post! Doctors: can't live with 'em, can't shoot 'em!

      Glad you've enjoyed the blog!

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  19. I take plaquenil and metho. I still have some pain everyday, just in different spots. Not a lot of swelling, just pain. The pain seems to be like whack-a-mole. It just keeps popping up again and again. Is this normal?

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    1. In my experience, yes. Whack-a-mole is a very good description for everything lupus. I also have pain without a lot of swelling. It makes it harder for physicians to believe me. :(

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  20. I know this is an old post, but I just stumbled on it today and now I have a question.

    I'm currently a candidate for a lupus Dx (lucky me!) with one positive ANA in my history, Reynaud's, recently low complement C4, profound fatigue, mouth ulcers, total body aches and pains... not really my point, but here's my question:

    For someone with lupus, if the pain is identical to a sprain given the inflammatory nature of both, is it possible to have so normalized that pain that a genuine sprain wouldn't feel all that unusual?

    Two years ago, I had a wrist injury that wasn't getting better and suddenly started locking up and popping in scary ways. I went to the ER, and based on the doctor's physical examination alone, he said it was "Just tendinitis." My MRI came back showing a torn ligament, sprain, and evidence of a partial dislocation (I told that doctor I felt something move!). My hand specialist put me in a cast for 6 weeks. Kind of a big difference between tendinitis and 6 weeks in a hard cast.

    The ER doctor's physical examination consisted of: Move wrist, "Does that hurt?" Poke wrist, "Does that hurt?" I told him what hurt, but I don't think he believed me because I didn't jump off the table screaming. My response was a calm, "Yeah, that one hurts a lot." But that's what I do. I had major oral surgery and refused Vicodin in favor of popping a few Advil. It's not that I don't hurt, it's that I'm used to pain and my body has so many issues that I prefer to start with meds I'm already familiar with.

    Is there a chance those of us with inflammation-based chronic pain have acclimated to that pain so much that a normal sprain or torn ligament will hurt more, but not so much more that we act like normal people with sprains and torn ligaments?

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  21. Thank you, Sam. I am awaiting a dx, after about 20 years of increasing pain and other symptoms, and doctors and family who kinda blew me off. After hearing "arthritis", " in your head", "whiner", " lazy", "everybody has pains", etc., I FINALLY began to be taken seriously by our awesome FNP, who is also a family friend, thinking fibro, but seeing me get worse, consulted w/ a fellow MD , and they both agreed maybe it was time for the neuro and rheumy. I let my stupid husband talk me out of the neuro vist ( his reasoning? " You've seen Dr. after Dr., and all they ever say is nothing's wrong or they don't know. Building all these bills up for nothing!" And we even have ins.....). I didn't go to the neuro (yet!), but the first rheumy visit seemed to indicate maybe lupus, maybe some sort of autoimmune disorder, too much presenting to say not so, so he ordered more specific labs to look at along with my symptoms and history. Gave about 9 vials of blood this morning for it. Next apptmt is Sept 4. So, maybe by then, at 51 years old, maybe my torture will at least have a name, and a direction to go in, as far as treatment. All that for this : When I finally DO have a "legit" dx, and my torture has a name, ( and from everything I've read, I'm betting on the wolf), I would like to borrow this post you wrote, and use it to tell my family where I "live", 24/7, 365. Your well-written piece says it so clearly, I love it. Damn them all, with their stupid little aches and pains, always wanting to make it a contest or belittle what I struggle with day in and day out, thru every 40 hr week, every holiday, every family supper, every weekend full of chores....Sorry, got a little worked up, there. But may I show it to them? It's quite clear, thank you for writing it.

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  22. Thank you, Sam. I am awaiting a dx, after about 20 years of increasing pain and other symptoms, and doctors and family who kinda blew me off. After hearing "arthritis", " in your head", "whiner", " lazy", "everybody has pains", etc., I FINALLY began to be taken seriously by our awesome FNP, who is also a family friend, thinking fibro, but seeing me get worse, consulted w/ a fellow MD , and they both agreed maybe it was time for the neuro and rheumy. I let my stupid husband talk me out of the neuro vist ( his reasoning? " You've seen Dr. after Dr., and all they ever say is nothing's wrong or they don't know. Building all these bills up for nothing!" And we even have ins.....). I didn't go to the neuro (yet!), but the first rheumy visit seemed to indicate maybe lupus, maybe some sort of autoimmune disorder, too much presenting to say not so, so he ordered more specific labs to look at along with my symptoms and history. Gave about 9 vials of blood this morning for it. Next apptmt is Sept 4. So, maybe by then, at 51 years old, maybe my torture will at least have a name, and a direction to go in, as far as treatment. All that for this : When I finally DO have a "legit" dx, and my torture has a name, ( and from everything I've read, I'm betting on the wolf), I would like to borrow this post you wrote, and use it to tell my family where I "live", 24/7, 365. Your well-written piece says it so clearly, I love it. Damn them all, with their stupid little aches and pains, always wanting to make it a contest or belittle what I struggle with day in and day out, thru every 40 hr week, every holiday, every family supper, every weekend full of chores....Sorry, got a little worked up, there. But may I show it to them? It's quite clear, thank you for writing it.

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