Sunday, April 22, 2012

There's An Old Saying ...

by Leann

There's an old saying I learned when I worked in psychiatry years ago: the behavior engulfs the field. This was a meant as a caveat. Just because it looks like a duck and quacks like a duck--guess what? It MIGHT NOT be a duck. Certain psychiatric conditions are dramatic, with behavior that is so over the top, that doctors and other mental health professionals may make a diagnosis without checking out all the possibilities.

I saw this happen once when we had a patient with severe delusions and hallucinations. He was admitted as a paranoid schizophrenic to the medical psychiatric ward I worked on. He was so out of control he had to be restrained to keep him from hurting himself or others. Only when he fell into a coma and started running a fever, did the questions begin. Turned out this man had encephalitis. He was treated with the appropriate medications and made a full recovery. His behavior blinded everyone to a severe underlying condition. It probably started with a headache, but by the time we got to see him, he couldn't tell us about what led up to him seeing the pink elephants. He was too sick.

I have now learned, through personal experience, that this caveat doesn't just belong in psychiatry. I have what are called "invisible illnesses." You cannot look at me or do a simple blood test and learn that I have fibromyalgia, chronic fatigue syndrome and chronic Lyme disease. The doctor does know I have all these things. I have been taking all kinds of treatments for years, both traditional and non-traditional. But I like to solve mysteries. I actually make a living solving fictional ones. :-) This past month, I went for my regular 3 month appointment with a laundry list of tests I wanted my doctor to do. Why? Because I am NOT getting better and I am very frustrated. But unless I ask for something extra, my behavior--the fatigue, the pain, the insomnia, the headaches--those symptoms "engulf the field." They are all part of the illnesses the doctor knows I suffer from.

But when my lab work came back, what a surprise! It's sort of like the bad news and the good news all rolled into one. One of the tests I asked to be done was a vitamin D level. Normal blood levels run between 30-74, but 50 is a good number. My number? SIX. 6. Just  6. That is considered a severe deficiency. What are the symptoms of severe vitamin D deficiency? Fatigue, pain, insomnia, headaches and more of what I experience on a daily basis. My behavior engulfed the field and if I'd given up on me, I still wouldn't be on the right track. I just started taking 50,000 IU of vitamin three times a week. I am almost afraid to believe that in 6 months to a year, I might feel normal again.

Thank goodness I love a mystery. :-)

16 comments:

FirstOfMay said...

Sometimes doctors are just idiots. I have obvious physical disabilities as well as invisible problems. I used to go to a clinic for my disability, but now I just go to our local family dr., who I think is an idiot. He treats me for my high bp an listens to my heart. That's it. It doesn't matter that I tell him every time that I still have headaches. He won't try to find out the cause of those or treat them, although I think they are sinus/tension related. And he doesn't do any tests/x-rays for my disability. Add that to the fact that the first time he saw me, he immediately put me on medication for heart palpatations without considering that it might be just a normal thing for me. I am now on more medications than I was before I started seeing him and just don't feel like myself most days. One time I even went off ALL my medications for a week before my appointment and guess what. I had the best dr. appointment EVER.

Aurian said...

Wow Leann, I really hope you will feel better soon! Could this mean those diagnoses were all wrong?
And FirstOfMay, why don't you change doctors if it is such an idiot?

Leann Sweeney said...

First of May, I am SO sorry and boy do I know what you are going through. It's become not WHAT patient a doctor sees, but how many s/he can see in an hour. S/he glances at your chart, sees the old stuff and just assumes there is nothing different that can be done. Finding a doctor willing to go the extra mile, taking time, actually caring is like finding a needle in a haystack. I now go to the doctor with a list, one for me and a copy for the doctor. We go through that list item by item. The doctor may have given up on me, but I refuse to give up on me. Try the list approach and see if it works. Each item should be followed by two questions: Could this be a symptom of something WE'VE missed? Is there another test you could do? If the doctor is unwilling to help you, then yes, it's time to find someone else.

Leann Sweeney said...

Thanks Aurian. I do have Lyme and about 5 lab tests that show I do. But I went through 18 months of treatment (expensive treatment) and did not get significantly better. Fibro and chronic fatigue can be caused by Lyme. But in my gut, I always felt like the doctor was missing something. I hope this time we have found it. (PLEASE).

Aimee Hix said...

Leann, I hope so much this is the solution to all you've suffered just in time for you to move to your new home and start your new life at the lake.

I can't wait to see you at Malice and let you know in person just how much I hope that you're feeling better soonest.

Leann Sweeney said...

Thanks Aimee! Can't wait to see you at Malice!!

Nancy said...

Congratulations on detecting the vitamin D deficiency! Good sleuthing! I think you are bound to feel better and better over time, now that you are taking the vitamins.

Dru said...

Leann, I what does the IU stand for?

FirstOfMay, that happened to me and I immediately changed doctor. Of course the first doctor I found and like was not on my plan.

I've learned to ask my doctor about every aches and pains because the one time I didn't, it cost me 6 months of treatments that I wouldn't have needed.

Leann, I hope the infusion of vitamins alleviate some of your discomfort and pains.

Maggie Sefton said...

Leann---I'm so glad you got tested. My doctor is a big believer invit D. She put me & a lot of her patients on increased dosages of Vitamin D years ago. And eve two years ago she checked mine again & it was in 70s, but her readings in research showed that the mega-dosages weekly also have a beneficial effect on our bodes in MANY areas. Vitamin D is a wonder drug & it's not even a drug! It's natural. And most people are WAY under what they should be. It's even cheap. :)

ponyswimgal said...

Ye gods! SOOOO happy you kept at it. New research is revealing so many new avenues of treatments AND new ways of looking at old problems. Let's hear it for the researchers! I finally found I had a low thyroid condition (before my thyroidectomy) and regulating that issue has been extremely beneficial. My SAD & chronic depressed feelings were almost completely alleviated by taking 4 grams of omega 3 a day -- which was prescribed because my triglycerides were elevated. AND the triglycerides have come down, too. Certainly hope the Vit D increase for you helps you enormously. Go, sleuth!

Leann Sweeney said...

You know what I'm talking about Ponyswimgal! With the D, my chiro, who is also a nutritionist, said I HAVE to increase my essential fatty acids. Vitamin D is a fat soluble vitamin and it needs to be balanced with other vitamins and minerals to work properly. So I am on big doses of them as well. Not having a gall bladder has complicated EVERYTHING. But I am taking old fashioned bile salts and they really work. no nausea with the vitamin D when I take that with the big dose of D.

Sara said...

Yee-haw, Leann! So glad you were persistent! In 1984 I was diagnosed with high liver enzymes and after a lot of tests ended up at the Cleveland Clinic where I still had no answers (although I overheard the dr. telling someone there was no way my levels should be that high...he acted to me like it was no big deal). I decided at that time that I wouldn't just be a good little patient. My hubby & I are lucky to have a great internist now (who's a computer geek which means I can email him...a big plus) and in the same bldg as my gastroenterologist. The gastro was Jim's dr. when we got married, and finally diagnosed me w/chronic persistent hepatitis which he attributed to my liver issues back when I had my gallbladder out at age 13 (I've been tested for all the known hep antibodies, all negative). Fast-forward to a couple years ago when I was found to be VERY anemic, and the gastro diagnosed me with non-alcoholic hepatitis, again due to those long-ago bile duct issues. Luckily so far he's happy at my twice-a-year checkups (although he'd like the weight to come off faster). I truly realize how lucky we are to have our doctors, and stories like yours and other posters just make me appreciate them even more!

Leann Sweeney said...

So glad you have a good doc, Sara. My doctor is good, but she totally missed this. I think part of it relates to how I have written all these books since being diagnosed with Lyme. She didn't see me as being quite as "sick" as most patients with the illnesses I have. Trouble is, she had no idea how busy and productive and full of life I was BEFORE all this happened. I am a fighter, always have been. I don't stay in bed when my body screams at me to stay there. I just get up and get on with what I can do. But I have had to give up almost every activity I ever enjoyed aside from writing plus I had to take early retirement. I was a nurse and my cognitive functions were going downhill because I was so exhausted. As long as I spend most of the day at rest, I am okay. But now ... all those quilt blocks and fabric I've saved, all those cross stitch projects I've put aside, all those trips to see my granddaughters I couldn't take? Well, maybe .... :-)

Elizabeth Reeves said...

I can commiserate... as you know, I also have Fibromyalgia. Last year, my doctor had to put me on the 50,000 IU regimen of Vitamin D, as well, for a severe deficiency. Oddly enough, it has helped my immunity tremendously. While everyone was getting sick over the holidays, I was just fine... :)

Please keep us posted on your progress!

FirstOfMay said...

Aurian, I can't change doctors because he is the specified doctor on my dad's insurance plan, and since I'm disabled, I have to be on my dad's medical insurance plan. Plus, he is also the family doctor that my mom trusts completely.

Leann Sweeney said...

I hope you try the "list of things we need to talk about" approach with your doctor, First of May! It might help. I know you are having a hard time and I am so sorry!