Sleep…how can something so essential be so elusive?

I have had trouble with sleep for most of my life, at least as far back to my teenage years. Of course everyone thought it was because I was a teenager that I wouldn’t feel rested until I slept into the afternoon, and when I felt so exhausted every school day, I thought I just wasn’t a morning person. Later in life, this led to drinking caffeine daily just to be able to focus on my work and even got so bad that I was nodding off at my desk sometime before my car accident, probably when I was 23 or 24.

I had insurance for the first time in a long time, so I went to see my doctor to complain of this fatigue. She insisted it was something I could change in my lifestyle, that perhaps I was going out late at night and partying or drinking caffeine too late in the day. I left feeling very frustrated, but I was insured by Kaiser then and couldn’t see any doctor outside of there. I found a website for a sleep center that looked promising, but had to just keep it in the back of my mind until I had insurance that would pay for a visit there.

Finally, when I was 27, I had a job with insurance that would allow me to see the doctor at the sleep center. I certainly hadn’t forgotten about it. This sleep center did not require a referral from a general practitioner so I was free to make an appointment for a sleep study.

When I met with the doctor, I was surprised at how laid back he was, and how he asked me some questions and sat back and said, “I think you know what you have, you just need someone to say it.” so he asked, “What do you think it is, I’ll tell you if I think you’re right.” I said “It’s probably sleep apnea.”

“Bingo.”

I was set up for a sleep study to verify our assumption and it turned out I have fairly severe sleep apnea. I never would have known that apparently I do snore, snoring can be silent, but apparently snoring was picked up in my sleep study. I’m not overweight nor are my tonsils too large. But here I am with this diagnosis. I went through a second sleep study for titration, to figure out what settings to apply to my CPAP machine. I went home with my machine and all was well.

For about a month, I felt refreshed every morning, but there was a lot of pain in my chest and stomach. I was swallowing air. My body just couldn’t get used to the air forcing its way into my body at night. I was switched to an APAP in order to slow down the air swallowing. Eventually I ended up in another sleep study, because after that initial month, my fatigue came back full force. My doctor wanted to rule out any other sleep disorder. Also, I was still swallowing air. I ended up on an Auto BiPap, probably one of the most expensive machines out there, but the air swallowing problem went away with this final machine change.

I’d also had problems finding a mask that would work for my rather small face and features. Doesn’t seem there is anything that quite works right without a lot of air leakage or on the other end of the spectrum, things tight enough to not leak would put pressure on my face and head and create a lot of damage in some cases. Currently I am using a mask that rubs the inside of my nostrils raw but it doesn’t leak so I just try to deal with it. I’ve been through probably ten masks.

I’m now 29 and I’m still exhausted on a daily basis. I know I feel even worse (which some days, doesn’t seem possible) if I don’t use my Auto BiPap machine but I am anxious to feel better.

When we ran out of ideas/options, I was then referred to the chronic fatigue/fibromyalgia doctor I am seeing now.

I am happy to report that after only a few days on all my new medications and supplements (five new medications, four new supplements), I have now had two nights of actual, deep, uninterrupted sleep. This is mind blowing to me, because I was used to a life of tossing and turning throughout the night. I thought this was NORMAL for many, many years! I could not wrap my mind around the fact that healthy sleep involves pretty much being dead to the world all night. Who knew? Certainly not me.

So, while two nights of uninterrupted (except by the incessant mewing of the cat this morning) sleep is a good sign I am moving in the right direction, I am still waking up feeling tired. I hope this goes away with more time. I am hopeful again. It’s a nice feeling.

Observations & answers

I have been feeling quite a spark of hopefulness lately. The other day I had a followup with my new doctor, who is a fibromyalgia and chronic fatigue specialist. He went over the loads of blood, urine and saliva test results and my MRI. It turns out the disc bulge I assumed was gone five years ago is still there! The good news is, this is treatable without surgery and perhaps I will notice a marked difference when it is taken care of.

There were also so many things that showed in my results that I simultaneously felt completely overwhelmed and grateful for a doctor who could finally sit down and pick all of it apart. I have had so much bloodwork done in the past, but probably never a doctor who was willing to go this in depth with the results. I think a lot of doctors are fine to dismiss something as not a problem as long as you fall within the “normal” range for something. However, my current doctor will point out to me when something is in the normal range, but on the high or low end, and how that could be a problem. Or, not necessarily a problem, but something that could be better, that we can work on.

How cool is that?

At my previous visit with him, I had learned about the possibility of Epstein-Barr causing chronic problems. I had absolutely no idea. I did have a rather vicious run in with mono about ten years ago. I never thought the virus could still be inside me and actively causing problems. The blood test results proved that indeed it is. I have read there is a link between Epstein-Barr and chronic fatigue syndrome. No wonder.

He also told me tonsils can retain all kinds of nastiness and luckily he has a plan to reduce the issues I may be having with my problematic tonsils. I bet they also play a part in my sleep apnea (of course they do)! Ever since the mono attack, my tonsils have been content to flare up at any sign of illness. Even though I had multiple instances of tonsilitis, no one would remove them. When I had mono, my tonsils were so severely swollen that they were touching each other, covered in blisters/pus pockets and so painful I was unable to eat for about a month while the illness lasted at its worst. My liver and spleen also were engorged with blood. Which leads me to my next statement…

It appears my liver and kidneys are having trouble functioning. It also appears the parasites I was fighting last year are still in my system, when a previous doctor had come to the conclusion that they were gone. My eosinophils are still very high, and my doctor says that is a sign of the parasites being in my tissues and/or organs, causing potentially large amounts of havoc. So instead of the natural items I was using before to battle them, I will be using prescriptions, which I am picking up tonight from the pharmacy. I’m a little worried, especially with how sick I got when I was fighting them last year, but he has given me some supplements to aid my detox so I can hopefully get all the toxins from the die off out, even though my liver and kidneys aren’t so great at their job.

My lymph system apparently could also use some help, and my immune system is struggling. No surprise there, as I just spent three months battling a very bad illness that actually required me to get a note from a doctor to get five days off work. Five days weren’t enough but it was the best I could do.

Also, my blood test results led my doctor to point out to me that my issues are *almost* as severe as many of his patients who are on disability! I pride myself on my ability to get my work done and done well, but it is VERY hard most days!

My thyroid, while functioning quite well, is apparently putting out more of the stuff that makes me want to sleep and put on weight; hibernate, basically, and not enough of the good energy I need. So I am now on a thyroid pill to help balance that.

My cortisol levels crash in the evening. I’m on another pill for that.

My estrogen levels are that of a healthy 60 year old woman. For a 29 year old, not so much! I am glad I made the decision to come off depo provera. I have been on it for 10 years, I want to start with a clean slate and get my hormones balanced.

Last but not least, he has plans to work on my stellate ganglion. He had to explain to me what this is. My anxiety is probably due to the fact that my childhood experience left my body in a fairly permanent “fight or flight” mode. This is possibly also the cause of my Raynaud’s syndrome. He has a plan to help with this as well, plus I am in therapy.

So. Those were all the answers I received. It left me reeling and feeling very unusual as mentioned. I have been incredibly moody as well, likely due to coming off of depo.

I noticed something funny because of this. Friends who have never really understood what I am going through suddenly have something click into place when they hear I have been diagnosed with a problem that someone they know and love has been diagnosed with. Usually a parent. This happened when I got my diagnosis for fibromyalgia, and again when I was diagnosed with the active Epstein-Barr virus. It has served to remind me that not all people are capable of understanding just by what I say. I think a lot of people, not all, but some, tend to assume I am exaggerating or just not taking proper dosage of vitamins or whatever. Maybe they don’t realize how much of my “free time” goes to appointments. Maybe they don’t realize how much of my money gets funneled into my healthcare. I truly am trying to better myself because I can’t imagine living like this forever.

I am an incredibly sensitive and empathetic individual and I have to remember not everyone is capable of understanding these things as easily as it comes to me. I don’t want that to sound egotistical, because I don’t mean it that way. It’s simply a difference that I need to come to understand and not be hurt by.

I was *so* grateful I had a therapy appointment scheduled in the afternoon after my follow up at the doc. I could have used another hour though!

Here’s to answers, friends who understand, and moving forward…progress!

The beginning of a long journey

I’ve lost myself. I truly feel that. Over the years I have spent struggling with my illnesses, pains, stress, anxiety, I have completely lost who I am. This is a story of earning myself back.

My experience is not unique, unfortunately. There are many people who suffer and get passed around the medical industry, no one wants to take these things on. The judgmental glances of the disbelieving, the accusatory glares of the doctors who label you a drug-seeker, friends who roll their eyes, you’re just another hypochondriac.

I’m trying to keep myself as anonymous as possible, because I am just like everyone else in my position. I also fear the backlash of the truth getting out there; I have lost a job due to the crippling aspects of my conditions. I have grown very distrustful of many people, including those I work with.

And this isn’t just my story. This is the story of everyone I can find who struggles with chronic illness. I want to hear from you. I want to reach out and grasp those who understand.

Where does it all begin? It’s hard to pinpoint the beginning. Maybe I’ll relate my story backwards.

As of now, I have reached a diagnosis of traumatic onset fibromyalgia. This is in addition to sleep apnea, Raynaud’s Syndrome, plantar fasciitis, depression, anxiety, chronic fatigue, TMJ disorder with a large helping of chronic pain, tension, and slipping ribs.

There might be more I am forgetting! So. Where I am at now: waiting for a battery of blood test results along with saliva and urine tests, seems every new doctor wants new tests run. An MRI is scheduled for next week, my new doctor has a theory regarding my fibromyalgia: a bulging disc. I did have a bulging disc five years ago. He asked me if it was healed. I quickly answered “yes” but on second thought…how would I know? I never had a follow up MRI.

I’ll go more in depth with other things for now, but this is my general introduction, just to get something out there. I am hoping this blog will serve as an outlet for me, a way to track my symptoms, a way to reach out to others. I would love to hear from anyone with any kind of chronic issues or problems that have proved difficult to understand. I would like to stir up discussion. I know I have a hard time talking to most friends about these problems because a lot of people do not understand. I don’t want to seem like I am complaining, though sometimes I am, and sometimes it’s necessary!

Feel free to get in touch.