Information, advise, insights, and a little bit of humor for people with Fibromyalgia, chronic pain, or autoimmune diseases and their families, but mostly just a whole lot of ranting and raving to keep myself sane. Thanks for reading.
Showing posts with label sick. Show all posts
Showing posts with label sick. Show all posts
Tuesday, March 24, 2015
"Normal People SIck"; Visiting the Doctor
One of the troublesome things about having fibromyalgia is noticing when you have something else going on in your body besides the "typical fibromyalgia" stuff. We are so used to things just not being right, so when other symptoms start cropping up we dismiss them and assume they are caused by the fibromyalgia. But, what if they aren't?
I spent the last week or so in a dizzy haze. Every time I got up from my chair, rose from bed, or even moved too quickly, it would result in sudden onset dizziness and nausea. Okay, I thought, more vertigo, yeah! My body would not let me sleep through the dizziness, nausea, and hot & cold sweats, so it had been well over 2 straight nights of insomnia. I was already feeling unwell and that sure didn't help, but what's a couple more symptoms, really? No big deal, I got this! Until.... I hopped in the car and starting driving to work. As soon as I came to a park my mouth starting filling with saliva, my chin started quivering, and well, the morning handful of medications tasted much worse coming back up. WOW, they sure do burn! I ran into the building to grab a glass of water to wash out the taste, except running was not the best of tactics. As soon as I came to a stop in front of the watering hole, all I could do was hold on to the wall to keep myself from falling into a vortex of queasiness, dizziness, and more vomiting. Let's just say, I did not make it at work for very long. I could not possibly focus on anything, let alone be productive enough to get anything done. I have experienced the nausea and dizzy spells before, several times. It's a trick of the trade really. But, I RARELY vomit. Something was not right. This had been getting worse and worse over the course of over a week. Maybe this wasn't just typical fibromyalgia stuff, maybe this was something else? We all know that inner argument we have with ourselves, where we try our best to push it off on being the fibro instead of something else. Not until it really proves to us that it isn't will we finally do something about it.
Finally, it got bad enough to where I simply had to go into the urgent care. Though, not before I started fretting about going in to find out that there is nothing going on, again. Not before I pictured one more doctor giving me the "What the hell is wrong with you?" look, again. Certainly not before I pictured the lab tests giving no concrete answer, AGAIN. This is what I remember any time I think about going in and I always wonder why I really bother. I mustered up the courage to go in anyways.
I arrived at the urgent care, thinking that I would head straight back to work after I was done there, but 3 hours later I left with little hope of getting back to work that same day. After one hour in the quickly filling waiting room, I finally was moved to a room. The nurse took all of my stats per the usual. Normal heart rate and rhythm, normal temp. (funny because mine must read several degrees cooler or something), normal respiratory rate, normal blood pressure, normal, normal, normal. After that, I fell asleep waiting for the doctor, so I really could not tell you how long I waited. I did not even care at that point, it was just nice to rest my head after the insomnia I had been experiencing. Anyways, Dr. came in and started asking the typical questions. What are your symptoms? I am always confused on how to answer this question. Do I include the usual stuff, the unusual stuff, just the new stuff, or a combination of what ever I find relevant? Usually I chose the latter. But, what if I am missing something because I am dismissing it to fibromyalgia? Or what if I accidently add symptoms that are typical fibro and only confuse the process? Next question; Are you experiencing any pain? Well, YEAH! That is what I want to say, but that is not what they are looking for. Okay, so is there any pain that recently started that might have anything to do with what is going on inside my body? Could they all be? Should I tell him everything that does hurt? Should I just say that I am not experiencing any new pains? Should I just lie about this or should I tell him "everything hurts"? I hate that question! How the hell are we supposed to answer that?!?! Next; Are you having any bowel or bladder difficulties? Well, yeah, but they started years before this, so do I say yes, or no? Do I really need to tell him about my bowel habits if I find it not relevant? Does your stomach hurt when I do this? *poke* *push* *knead* You can't really hide the grimace on your face when they start shoving their hands into your intestines. Oh my, let's make sure you don't have kidney or liver problems!!! No, Dr. it must just be regular pain, I say. "Regular pain?" "I'm sorry, no pain is regular." Well, for me it is. Of course, he checks markers for kidney and liver dysfunction just to be safe, any Dr. would.
It is amazing to me how much more complicated regular old doctors visits are for people with chronic pain conditions. I do not want to lie to my doctor when I get the regular rundown of questions, but I simply do not have the energy to try to explain what exactly I mean by every answer I give. Usually, getting into my RCP is at least a month's wait, so for cold/flu, and other infections and such, I typically have to go to an urgent care facility or walk-in clinic. The problem with this is the doctor's in such a place usually do not have much practice in chronic conditions. Simply put, we would not go see an urgent care provider for anything chronic because that is what specialists are for. Usually, this also means they have little background in ME/CFS, fibromyalgia, or chronic pain conditions. This just makes it more complicated for us. We usually have to find out what the doctor knows and what they don't so we can give our information accordingly. More often than not, we are more clinically capable and knowledgeable about chronic conditions than they are. Fun fact: In the typical 8 years of schooling that a doctor receives, they cover 'pain management' for an entire 2 hours! TWO HOURS! Chronic pain is considered to be the biggest medical drain on society, and they spend 2 HOURS learning about it. NO F***ING WONDER!!
Well back to the visit; I did get the "What the hell is wrong with you?" look a time or two, but I didn't have enough energy to care really. I got a urinalysis and a basic blood differential panel. I took another "nap" while waiting for the results. Nothing too abnormal. Just a high white blood cell count. (For some unknown reason I have had a high white blood cell count almost every single time I have a basic blood panel, except for once since 2010; roughly one or two normal results out of 30 times) I did not find it strange by this point, but what he found strange was that I had an abnormally high leukocyte (WBC) count, but it did not specify which one was high. Leukocytosis (elevated WBC count) can usually point to the cause depending on which kind of white blood cell is the one that is elevated or decreased. Usually one of the types stands out to show more information about the cause. If it shows increased percentage of basophils, for example, it would be more likely an allergic reaction, and an increased percentage of lymphocytes would be more correlated with a bacterial infection per say. So, he really was not sure what kind of infection it was, or even if it was an infection. He quickly prescribed me antibiotics (another one of my pet peeves), prednisone to speed up the healing, and an anti-nausea medication. He said that he was assuming it was a middle ear infection, or vestibular neuritis. At that point, I just wanted to get the heck out of there, so I gladly agreed that that could be the problem, and went to fill my prescriptions. Hopefully, it is the problem and I can get back to normal Me-ness.
Getting other problems on top of having fibromyalgia is often extremely confusing. In some sense or another, our immune systems are thought to be out-of-whack. We typically get strange and unlikely infections, but we often have trouble really identifying the overlaying problem when it starts. I know I do. I could have had this "infection" for months and not have known. But, it is important to really listen to your body. If you feel that there is something "different" going on, then it is always wise to go have it checked out. Many of us find going to a doctor outside of our fibromyalgia network much more difficult than the typical person, so we generally wait until we know we absolutely need to. Sometimes this results in more complicated infections or more severe illnesses because we put them off without treatment. When we are sick with some sort of infection or other illness, our fibromyalgia tends to flare as well. This results in increased pain and lethargy, which makes our other illness more difficult to deal with than what is normal. A cold or ear infection can literally wipe us out completely, especially if we are teetering on the edge of a flare as it is. All this noise and sickness makes our immune and central nervous systems go even more haywire, and begins another cycle of extreme flare activity.
Although, we usually detest the idea, it is a good thing to go in and make sure there is nothing else going on when you feel more strange than usual. There is, though, usually harm to be done if you put off going in, causing even more flaring.
Thursday, March 19, 2015
Colaborative Reading and Information List for People With Chronic Illness
This is a collection of reading materials from other sites and such. They are all things I find interesting and think that other people with chronic illness will find interesting as well. I would like to make this a collective effort by the chronic illness community, so please feel free to pass on your favorite reading materials and they will be added to this list. You can do this by using the comments, or emailing the information to me. Thanks for your help! -Aimee (aimflo21@gmail.com)
Magazines & Books
Fibromyalgia and Chronic Pain Magazine from the National Fibromyalgia and Chronic Pain Association: (Please participate in their survey Hydrocodone Rescheduling: The First 100 Days)
Videos
Struggling to be Me With Chronic Pain:
Clinical Reviews/Case Studies/In-Depth Reading
Oxidative Stress
http://www.oxidativestressresource.org/
Oxidative Stress in Fibromyalgia
http://link.springer.com/article/10.1007/s00296-003-0427-8
Mitochondrial Dysfunction- A Biomarker for Fibromyalgia and ME/CFS?
http://www.prohealth.com/library/showarticle.cfm?libid=18130
Mitochondrial Myopathy Presenting as Fibromyalgia (Case Study)
http://www.medscape.com/viewarticle/761364
Drugs Cause Mitochondrial Damage
psychrights.org/research/Digest/.../DrugsCauseMitochondrialDamage.PD...
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0CCcQFjAB&url=http%3A%2F%2Fpsychrights.org%2Fresearch%2FDigest%2FNLPs%2FDrugsCauseMitochondrialDamage.PDF&ei=QNwOVZ3rMc3coATWgoDwCw&usg=AFQjCNGvk016HTfiedDe4nv5K2fTjv0T7Q&sig2=EQ6oYl_s9SuEiCST0zaXtw&bvm=bv.88528373,d.cGU
Chronic Illness Humor
Courtesy of quirkygirl22
http://whatshouldwecallchronicillness.tumblr.com/
Sick Humor: The Top Ten Worse Suggestions Given to Someone With A Chronic Illness
Via Amy-Beth Maran @ But You Don't Look Sick
http://www.butyoudontlooksick.com/articles/sick-humor/sick-humor-the-top-ten-worst-suggestions-commonly-given-to-someone-with-a-chronic-illness/
Chronic Illness Humor: Memes
Susie @ Pins and Procrastination, Great Blog, Thank you!
http://pinsandprocrastination.com/chronic-illness-humor/
What It’s Really Like To Be Chronically Ill
Oxidative Stress in Fibromyalgia
http://link.springer.com/article/10.1007/s00296-003-0427-8
Oxidative Stress and Mitochondrial Dysfunction in Fibromyalgia
Mitochondrial Dysfunction- A Biomarker for Fibromyalgia and ME/CFS?
http://www.prohealth.com/library/showarticle.cfm?libid=18130
Mitochondrial Myopathy Presenting as Fibromyalgia (Case Study)
http://www.medscape.com/viewarticle/761364
Drugs Cause Mitochondrial Damage
psychrights.org/research/Digest/.../DrugsCauseMitochondrialDamage.PD...
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0CCcQFjAB&url=http%3A%2F%2Fpsychrights.org%2Fresearch%2FDigest%2FNLPs%2FDrugsCauseMitochondrialDamage.PDF&ei=QNwOVZ3rMc3coATWgoDwCw&usg=AFQjCNGvk016HTfiedDe4nv5K2fTjv0T7Q&sig2=EQ6oYl_s9SuEiCST0zaXtw&bvm=bv.88528373,d.cGU
Humor
You Know You Have A Chronic Illness When.....
Reprint with permission of author, Lisa Copen, Copyright 2012.
http://invisibleillnessweek.com/2009/05/12/you-know-you-have-a-chronic-illness-when/Chronic Illness Humor
Courtesy of quirkygirl22
http://whatshouldwecallchronicillness.tumblr.com/
Sick Humor: The Top Ten Worse Suggestions Given to Someone With A Chronic Illness
Via Amy-Beth Maran @ But You Don't Look Sick
http://www.butyoudontlooksick.com/articles/sick-humor/sick-humor-the-top-ten-worst-suggestions-commonly-given-to-someone-with-a-chronic-illness/
Chronic Illness Humor: Memes
Susie @ Pins and Procrastination, Great Blog, Thank you!
http://pinsandprocrastination.com/chronic-illness-humor/
Other Blog Posts
What It’s Really Like To Be Chronically Ill
The worst part is that there is no escape. There is no light at the end of the tunnel. There is no happy ending. There is no way to make the incurable go away.
Lauren Anne, 1 Aug 2014
13 Reasons Why "You don't look sick/disabled" is Not a Compliment
Thanks to: So, Yeah, Anyways! Blog
Thanks to: So, Yeah, Anyways! Blog
A Fantastic Tumblr Post on Dismissal
Via: Making The Invisible Visible. Thank you!
Via: Making The Invisible Visible. Thank you!
10 Things You Should Say to Someone with Chronic Illness
Thank you to Susie @ Pins and Procrastination
Thank you to Susie @ Pins and Procrastination
Headache in the Temples
Tony @ Integrative Body Works
Tony @ Integrative Body Works
Patients & Providers Tell Stories of Dreaded Urine Drug Test
Dr. Jeffrey Fudin's Blog
PsyBlog- Understand Your Mind, 2015
http://www.spring.org.uk/2015/03/the-healthy-brain-food-in-every-fridge-that-gets-overlooked.php
The Things You Should Avoid Saying to Young People Living With Arthritis
Chronically Creative
http://www.chronicallycreative.net/2012/10/the-things-you-should-avoid-saying-to.html
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