Low-Dose Hydrocortisone for Treatment of Chronic Fatigue Syndrome

My mom brought this article to my attention:

Dose Hydrocortisone for Treatment of Chronic Fatigue Syndrome

I have been doing a lot better. Unfortunately, today I'm a little under the weather. My thyroid feels a little bit swollen. I'm still confident that I am improving because my mind is working a lot better. I'm having creative thoughts again, which is a relief. I will keep this short though because I have to run errands.

More later.

Started Cortef today

5 mg. two times daily with food. I feel better physically but am having chest pains. Also, I feel very sleepy. It is a little strange but a welcome change to the all consuming body weakness and fatigue. It appears that my hypoglycemia is lessened as well. Of course, this is only day one. We will have to see how I feel as time goes on. My body has a way of acclimating to things; after brief improvement taking me promptly back to square one. I am confident in this situation that things will be different.

I have a echocardiogram on the 25th to investigate a heart murmur. I also have chest pain upon physical exertion. It seems that the cortef is making the chest pain worse. I truly hope that I don't have heart problems. I don't need more to worry about.

So if the cortef doesn't give me a heart attack, it will have been an improvement so far.

My ultimate goal is to regain the ability to exercise and benefit from it.

Storms are brewing outside. I like taking naps during storms. It is very comforting.

I just received word that my Aunt was in a car accident and broke some ribs. I am waiting for a call from my mom on details. I seem to be handling it better than I normally handle stress, which means that the drugs might be working.

More later.

Cortisol test results, etc.

I go my lab results back. My cortisol is "very low" again according to Dr. Weiss. He will call in my cortef tomorrow. I am very hopeful. A ray of hope is shining through the fog of some very intense fatigue. It has been very bad lately. I am dealing with some suicidal thoughts, which is unusual. I guess I'm getting tired of feeling bad with no end in sight. No worries. My love for friends and family keep me tethered doggedly to this mortal plane.

I will update again after I start the new meds.

Cortisol tests, adrenal fatigue, glandulars and a rant about being sick

I completed my saliva/urine sample on the 28th and sent it out yesterday. Once it gets to the lab, they will measure my cortisol levels and based on the results Dr.Weiss will decide whether or not to put me on low dose cortef. Dr. Teitlebaum, whose CFS protocol Dr. Weiss subscribes to, wrote an article on using low dose cortef to treat adrenal fatigue (a condition I was diagnosed with last year) that says that these saliva tests tend to be inaccurate. Despite this, the saliva/urine test I had done last March said that I had very low cortisol levels. In all honesty, I hope that they're low again because this means that there's a known treatment protocol and a solid reason behind my ongoing fatigue and weakness. If I come out normal, there's either something else wrong with me or the test was wrong. Either way, it makes things far more difficult than they should be.

For now, per doctors orders, I am taking over the counter stuff for my adrenal fatigue called Adrenal Stress End. It is adrenal cortex extract aka. glandulars from a company called Integrative Therapeutics. I had taken them for about six months or more before and saw improvement but ceased taking them because Dr. Wu (my naturopathic doctor) wanted to start me on some herbs and didn't want to overwhelm my system. I was okay for a month or so and then crashed. I always have so much going on in my life that sometimes it's hard to track the cause and effect of my ever changing treatment regime, but looking back perhaps going off the glandulars was not such a good idea.

Glandulars, by the way, are ground up and dried extracts of animal glandular tissue. My thyroid medicine, Nature-throid is a glandular because it is composed of dessicated pig thyroid. I also take calf thymus gland extract sublingually three times a day to control my viral symptoms, (it's called proboost and it works incredibly well). The glandular that I just started is adrenal extract from a cow, I think.

Dr. Teitlebaum is a proponent of glandulars, as is my doctor. Dr. Wu doesn't seem to be much of a fan, although they seemed to work and so I'll take them. The point is, they're kind of controversial. I read an article written by Dr. Weil (whose dismissal of adrenal fatigue is disapointing) saying that they're not proven to work and kind of dangerous. In cases like this, you have to be willing to try things, pay attention to how your own body receives the treatment and continue or discontinue based on that. Looking to multiple medical authority figures tends to be contradictory and confusing, but I do find that having more than one health care practitioner has been largely helpful.

I have to get moving on this whole wellness thing. I'm not happy one bit about my inability to exercise. I'm far too vain to allow my body to take on the doughy amorphous slump of a middle aged person stuck in a veal fattening pen, but that's certainly where I am headed if I continue on into my thirties sitting on my ass. I have no patience for this anymore. I was planning on starting school in September and now it's not looking good. I am tired all the time. It's an overwhelming desire to sleep that haunts me all day long. But that's not all. Maybe you have experienced this. It's that feeling that you get when you have exercised really hard and now you're ravenously hungry but you keep going, maybe because you're playing soccer or running a race for instance, and your muscles get very weak and very heavy (I think it's called 'hitting the wall'). Maybe you feel a little light headed too. In fact, your body is so desperate for rest and nourishment that even your thoughts are muddled. It's an all consuming exhaustion, but you know that after a nice meal and a glass of water, life will return to normalcy. In my case, that sense of heaviness, soreness, dehydration and exhaustion is what I am up against after one of my boyfriends families social events or a trip to the mall. Some days, I just wake up like that. And there is no meal or glass of water that will make this feeling go away. For now, it's just the way things are. Some days are better than others and these days, I have a good day from time to time (every so often, a good month or two). For that I am grateful, but I don't think it's too much to ask that I'd like to have some of my youth back before it's gone.

Thanks for reading this, if you've made it that far. I don't get a chance to explain this to folks very often. People sometimes tell me that I just need to tough it out, or do stuff anyway or to just try exercising (it would be all I do, if I could) and I'm usually too tired to defend myself. If you are one of those people, give me a break. I don't claim to know what your life is like, so do the same for me. When people patronize me by giving their bad advice, more than a mere annoyance, it exposes all the unspoken assumptions they harbor about the nature of my condition, about my motivations, my state of mind and my moral sturdiness just to name a few. Also, don't try to "joke" with me about how I'm making excuses. No one would lie about being tired for this long unless they were completely pathological. The patience with which I deal with people like this is a testament to my sanity. So don't insult me like that. It's not an excuse, it's not in my head. Don't tell me I'll be fine. I have a chronic illness. It may never go away. I am faced with that every day of life.

My apologies, dear readers, for my anger. But understand, I have been through hell and for this, I am misunderstood at every turn. Chronic fatigue syndrome is trivialized by the medical establishment and therefore, entire communities, families and friends alike. I intend on remedying this as soon as I get a fourth of my old gumption back. Trust me, I'll fight the good fight to get the word out about chronic illness and the people who silently suffer.

If you have read this far and listened with a modicum of empathy, you now understand better than most people in my life what it is that I'm going through. So when I seem cranky, distant, unavailable or unaccommodating some days, it's nothing personal. And if I am giving you my attention and positive energy, that's my gift to you. It may not seem like much, but it's all I've got. In fact, it's usually more than I've got... but I give it anyway.

Nature-throid and other things

The last two months have been hellacious. I had a resurgence of old symptoms which left me couch bound. Because I had nothing else to do, I got on the 'ol computer and started looking around for other people going through similar issues. Interestingly, I found more than moral support, I found answers...on Twitter! I started following dearthyroid and thyroidmary (Mary Shomon, thyroid patient advocate) which is how I found out that there had been a recent reformulation of my beloved life saving thyroid medication Armour. Apparently, I wasn't the only one who had gone hypo since the change. So I talked to my doctor asap and got a script for Nature-throid. It was hard to find a supplier but I eventually found success through drugstore.com. It arrived in the mail four days ago and each day has been a little easier. At this rate I will be back in yoga class by August. Yay. Although, I have to say that I'm really pissy about that whole reformulation thing. I lost two months of my life and had it not been for the online communities of people out there openly discussing these issues, I would have continued to be in the dark about it to this day. Who knows how many months I could have lost. I've been known to loose years and I don't have the time or patience to do that again. Sadly, there are other people out there who are still suffering from the change and are blaming it on themselves. It's a damn shame.

I think I'm going to start trying to take classes in September. That is going on the assumption that I am in a better state then than I am now. I'm much better, but I'm not yet in the clear. Walking from the doctor's office uphill to the car was tough. I'm thiry-one for chrisssake. But my adrenals are not happy, this I know. I have been feeling very hypoglycemic lately. Dr. Wu is pushing me to quit coffee again, but I'm not yet ready to bed ridden again, albiet temporarily. Coming off that stuff is not a joke for me. I am a bona-fide coffee addict.

Speaking of hypoglycemia, if I don't eat soon I am going to start attempting to eat inedible objects, like the couch. So I have to sign out here, which is disappointing because I wanted to talk about something cool that Dr. Wu told me today about the connection between thyroid, adrenals and the ovaries in Chinese medicine. Ah well, maybe later.

It's been a year

I can't believe it has been a year since I have posted here. I have been thinking about this blog since I left it a while back. A lot has changed but some has stayed the same. It seems appropriate (at least for me) that my last entry was a year ago almost exactly because it gives me a sense of how far I have come and what it is that still needs changing. Since I last posted I have come to grips with a lot of food allergies which did amazing things for my energy levels, weight and my skin break outs. I also started on Armour thyroid which has improved my mood most markedly.

Yet, I'm still easily fatigued and basic things tend to wipe me out quicker than they should. On a bad day, a trip to the grocery store is hard on me and if we end up there during rush hour, I am totaled. A vacation takes months to recover from. The past few days Vijay and I have been visiting with his family from India and my throat is getting sore and I can feel feverishness coming on.

On the other hand, I just have just enough energy now that I'm angry about my situation more so than sad or disenchanted. I'm pacing in my cage now. I am still not ready to go back to the school of my dreams, which has me disappointed, restless, frustrated and angry. I am 31 years old and no where near where I think I should be. I do everything I can to avoid talking about myself in social situations because my lack of achievement without the context of this bloody health crisis simply smacks of failure. This is on my mind constantly. I heard a Zen saying the other day: "The obstacle is the path." I am currently meditating on the immensity of this statement as it applies to my life. As my youth fades and I am forced to eat my big life expectations, there in the rubble perhaps I will find the material with which to build a paradigm for my new life. Taking the plunge will involve completely letting go of the expectations that I brought to this place. The expectations that continuously haunt and undermine me.

Despite the anger, the frustration and the sense of being trapped, I am still secretly a glass half full type of person. Every time I gain a fraction of the function I had before all of this, I accept it with voracious gratitude. I am continually stunned by the kindness and selflessness demonstrated by my partner for never acting like any of my limitations are a burden to his life. I am happy to have a new plan. Even if it too falls apart.

Speaking of a new plan, the doc. is having my cortisol levels checked again. I have to collect saliva samples and send them to a lab where they will measure the cortisol fluctuation through out the day. The last time, Dr. Weiss said that they were, "as low as you can get" which is bad. He also found me to be suffering from an autoimmune illness, hypothyroidism, very under active adrenals and viral infections (mono & HHV-6).

My most recent tests say that my viral levels and my thyroid levels as well as their antibodies are normal. After I find out about my current cortisol levels he may want to put me on low doses of cortisol because he thinks that the remainder of my ongoing fatigue is from adrenal issues. Hopefully getting the next step out of the way will assist in getting me even closer to normal, whatever normal is. Will I remember once I get there?

I'm going to close with my new goal. I haven't figured out yet how to do this. I realized the other day that I have been hiding the extent of my illness from much of my friends and family. The new goal is to start talking openly about the obstacles that I have come up against over the years. I have been so afraid that people will assume that I am making excuses or that I talk about being sick too much or that "it's all in my head" (which is the worst thing you can say to someone suffering from chronic illness, the runner up being that you're just making up excuses). I have accidently, unknowingly created a place where no one understands my situation entirely or what happens behind closed doors. No one (aside from my partner) sees the days of being bed ridden that stretch into months punctuated by moments where I summon enough energy to go out into the world and pretend to be well, only to go home and collapse again. The other day I was thinking, "who is this actress that I have become?" I have to start talking about this now or else for anyone anywhere experiencing similar obstacles and keeping it quiet, we are actively creating our own prisons for ourselves and each other. I think it's time to start taking responsibility when and where we can, when we have the energy to do it. No one else will be our advocates.

If I were to have a midlife crisis, I wouldn't notice.

In the "Collected Works" of Carl Jung, he says:

"Among my patients in the second half of life -- that is to say, over thirty-five -- there has not been one whose problem in the last resort was not that of finding a spiritual outlook on life. It is safe to say that every one of them fell ill because he had lost what the living religions of every age have given to their followers, and none of them has been really healed who did not regain his spiritual outlook."

Reaching from his experience as a therapist, Jung concluded that those who have entered midlife have long cultivated their social facade and are thus ready to shed it and move on to more probing questions of identity.

Steven Cope, in his book "Yoga and the Quest for True Self" refers to Jungs characterization of a midlife crisis by saying that, "hithero repressed and hidden aspects of self may seem to overwhelm the conscious self, initating a difficult period of disorganization of the personality."

Hmmm. Sounds farmilar.

I guess my midlife crisis started after graduating high school. So what next? I can hardly believe that my middle years have only to offer more of the same. It seems entirely redundant. So I can only conclude that, if Jung is correct, that I will either have a much more profound breakdown than most, or I will skip it entirely because I have already gotten it out of the way.

It is possible that the way that psychological symptoms manifest themselves in people is different due to a differing social climate. There is what some now refer to as a "quarter life crisis" which I experienced, but not before my "transitioning to college and out of my teenage years" life crisis. But let us not forget the "high school life crisis" the "Junor high school life crisis" or the "Help. I'm stuck in elementary school life crisis". (Yeah, so I've always been a little bit of the restless & angsty type. The establishment likes to call it ADHD, but I'm more apt to think I'm allergic to boring)

Maybe our society is just broken when it comes to some of the more fundamental needs of humans. By which I mean, our priorities are out of balance and thus, people are continually surprised when meeting our goals fail to bring a sense of spiritual and psychological saiety.

Which brings me to my new theory, that everyone's problem is that we are simply stuck in our left brains and that we'd all be a lot better off if we learned to meditate or, in Jill Bolte Taylor's case, have a stroke (she's from Terre Haute, Indiana by the way).