Please continue to pray for us. While I did have a couple of good weeks, one night of terrible insomnia a week and a half ago set everything off again and I was back to square one with myoclonic jerks keeping me up late into the night and either the jerks or tremors waking me early in the morning. In addition to the jerks and tremors at night I have been having jerks and muscle spasms throughout the day along with other strange sensations like pins and needles in my hands and a strange buzzing sensation in my legs.
I have done more Googling over the last few months than I’ve ever done. Just searching and praying for answers as I have really gotten no answers from doctors at this point. A CT Scan came back normal which is good and I already told you how the sleep clinic results turned up (what to me seemed like a good night, to them appeared to be a pretty bad one.) I have wracked my brain over and over as to what might have caused all of this to begin. I remembered cutting myself on a beach hike while on our vacation so I thought perhaps I had come into contact with some sort of toxin. But then I remembered, it was just a spiny weed that I got caught on and the cut wasn’t even that terribly deep.
As I wracked and wracked my brain this morning I remembered back to last Fall. Last Fall I experienced several weeks of random pain in my hands, feet and legs. I finally went to my doctor when I had a strange little nob form on the back of my hand along one of the tendons. And I was really struggling with my insomnia at that point as well. I had been afraid that the strange bump (which I found the name of way back then but can’t remember anymore) was perhaps indicative of arthritis as my Grandmother had Rheumatoid Arthritis and I knew I was probably genetically predisposed to it since I’ve always sort of had “bad knees.” When I went to my doctor and told her of my symptoms I remember now that she suggested I may have some Fibromyalgia going on. Well, after a few more weeks I began to feel better and not have the pains anymore and the bump went away on its own so I quite forgot about the tentative diagnosis my doctor had mentioned. I am a busy Mom with a lot going on at all times and wasn’t fixated on what had passed and to my knowledge, taken care of itself.
Then I remembered back to the winter of 2006/2007 when I had had several weeks worth of headaches and neck aches and fatigue.
So when I began having these myoclonic jerks and tremors and twitches I simply did not make any connection to what had happened last Fall. All I knew was that I had been sick with what was apparently Labyrinthitis (inflammation of the inner ear) and I had lost a lot of sleep due to the dizziness. So once I felt better from that I began having the night time jerks awake me or keep me awake. It’s hard to keep track of all of it and how and when it all happened and stopped happening. But I know that it was kicked off after a lot of insomnia, it came to a terrible crescendo which lead me to seek medical help (and inadvertently got me fired by my doctor because I was crying out of exhaustion, having not slept more than a few hours each night for a week, and confused by the conflicting medical advice I’d been given.)
At the sleep clinic follow up appt. I was told that for most people 30% of their sleep is deep and restorative and I was hovering at 5%. When he told me that I of course understood why I am so tired all of the time! He prescribed a new med. that is supposed to help with over all sleep health but he told me to continue taking the pill I had been taking since I started having these problems for another two weeks as the new one began to take effect. However, all of the jerks that I had been almost free of for almost three weeks came back with a vengeance very near “my time” of the month, (sorry to any men here) even on the two sleeping pills together which, as I mentioned earlier, had me back to getting almost no sleep at all. I have also seen a Neurologist and she was fairly sure I didn’t have MS or a brain tumor or anything of such morbidity as those. She ordered some tests and I’m still awaiting an EEG (yes, an almost 5 week wait when you get referred through “urgent” neurology!) where I sort of don’t expect that they will find anything remarkable… but who knows!
Anyways, in my wracking my brain and searching for answers this morning, a light bulb went on in my head and I remembered my doctor’s tentative diagnosis of Fibromyalgia from last Fall. So on that hunch I went Googling for answers to see if Myoclonic jerks could possibly be a symptom of Fibromyalgia. I hadn’t really read up on it much since last year when the doctor suggested that I might have it because for the better part of the year I felt pretty well overall (except for my regular struggles with TMJ, back pain and insomnia which I had just come to accept as my normal settings, not related to a “condition” of any kind.)
In the first moments of my search this morning I found a family support site for Fibromyalgia that said the following, among other things that caught my eye and made me think AHA! We may have figured out the reason behind all of this! :
Deprivation of Restorative Sleep
Researchers have also theorized whether FMS may be caused by non-restorative deep sleep 16. Patients often report insomnia or light sleep and they indicate that FMS symptoms increase after disturbed sleep 17. Fibromyalgia–like symptoms can be induced in normal subjects by depriving them of deep sleep, except in volunteers whom exercise regularly 18.
One technique for studying the four stages of sleep is measuring a person’s brain wave activity using an electroencephalographic (EEG) machine. When a person is awake, brain wave activity is short and choppy. As a person relaxes and falls into deep sleep, brain cells fire more in unison causing brain waves to become slower. Light sleep is marked by alpha waves. The next stage is marked by slower theta waves. Then, rapid brain waves occur. Finally, the person reaches deep sleep marked by delta brain waves 19.
During deep sleep, abnormal amounts of alpha electroencephalographic, non–rapid–eye–movement (alpha–EEG–NREM) activity have been reported in FMS patients 20. When healthy volunteers were subjected to alpha–wave disturbance, they experienced muscle fatigue and tenderness over tender points considered diagnostic of fibromyalgia 21.
Although disruption during delta sleep may be linked with chronic pain and fatigue symptoms of fibromyalgia 22, a recent study conducted by Shaver et al. contradicted this association 23. The study reported FMS patients had more early night transitional sleep and more changes between sleep stages compared to the healthy control group, but did not differ in alpha–EEG–NREM activity. Contrary to several literature assertions, alpha–EEG–NREM activity sleep may not be a specific marker of FMS 24.
Fibromyalgia patients may suffer from other sleep disturbances such as myoclonus and sleep apnea (especially common in men). Myoclonus (“myo–” muscle; “–clonus” jerk) is a brief, sudden, singular, muscle contraction. Sleep apnea is a breathing disorder characterized by brief interruptions of breathing during sleep. Concomitant nocturnal myoclonus and sleep apnea can further decrease restorative sleep patterns 25.
Well, my sleep clinic confirmed my lack of deep restorative sleep but that last paragraph is the one that surprised me. I had not thought for a minute that I would actually find a connection betwen the jerks and FMS. So, could it be possible that we have found the answer or the reason behind all of what I’ve been going through? I don’t know. I certainly don’t want to be stuck with something as potentially difficult as FIbromyalgia *can* be but at the same time I can think of a lot of worse things a person could have that I’m thankful I probably do not have. So in part I am relieved at possibly having figured this out, though don’t worry… I still prefer a doctor’s diagnosis (Lord help my soul… I am a bit untrusting of doctors after a few recent experiences!) And more importantly a doctor’s treatment if this truly is the cause.
Please pray for healing still. Please pray that I will, long term, gain truly restorative sleep. One of the hardest parts of all of this, beyond being utterly exhausted all of the time and having headaches a great deal of the time and all of these wacky sensations all about my body, has been just not feeling like myself. Not being happy. Not being sociable (because I am so tired and have to go to bed so early, etc.) It has made me begin to really feel depressed. Something that is just so far away from my personality. Sassy, you know? Fun. Goofy. And a social butterfly. I feel like a social slug these days. My friends have all been so good to me and have helped me and prayed for me and comforted me. But I miss feeling like myself and wanting to go out and do things and get together and just be a girlfriend.
Add to this the fact that we seem to not be able to escape a single bug that passes on the breeze this Fall with two kids in school, bringing home the germs, so between me feeling awful and the kids being sick we haven’t been able to go to church in far too long. So pray for my spirit of joy to be restored. I know God is working and I know it is for my good and for His glory and He has plans for me and He will never leave me or forsake me but on the worst days it is hard to hold onto that. It’s definitely one of those scenarios where He is holding me even when I’m barely clinging to Him.
In the meantime I am taking a massive cocktail of vitamins and chinese herbs. And I’m going for acupuncture for the next few weeks (NOT CHEAP! Yikes! But worth a try!) In addition I’m probably going to be seeing the chiropractor a little bit more frequently as my back sounds like Rice Krispies. Lots of snap, crackle and poppin’ goin’ on!
We travel in December for my brother’s wedding and there is nothing I want more than to be feeling like a million bucks for that trip. Not only is it a special event, time with family which I cherish greatly living so far away, and I’m so looking forward to meeting my wonderful future Sister in law but… hello! It’s California! I get a month off of winter and I really really look forward to enjoying that.
SO I ask you for your continued prayers on our behalf. Pray for my husband Shawn too as he carries much more weight than he normally does when I feel this way. And for the kids as well. They know I am not feeling well much of the time and they want me to get better so we can be fun again. Their prayers are some of the most precious things. The night before last I had a particularly rough night and my youngest who is the birthday boy today and turned four (poor guy woke up with a fever on his birthday!) heard me crying and as he was going to bed he tenderly called out, “Mommy, don’t cwy. WE wuv you!” I know we have to work on those Ls but boy… did he pull some serious heart strings there. It makes it that much harder knowing how hard this is on the kids. So pray for them as well.
Thank you all so much for your prayers and thoughts and encouragements that you have sent to me. I appreciate them more than you know.