This sort of zombie hell has been with me for years, decades even, but is getting progressively worse over the last 1.5 years. My symptoms resemble a blend of CFS/ME, dysautonomia, and some sort of bipolar-spectrum mental illness, with poor-quality sleep being both a trigger and a mechanism that correlates with partial remission or worsening of all symptoms. Some key symptoms explained:
- Pervasive muscle and joint pain, and tendonitis that seems to be inflammatory in nature. Lots of spontaneous cracking, popping, and stiffness in all my joints - especially the ankles which actually make these sounds like some sort of creaky chorus as I walk. Achilles tendonitis, and worsening stiffness in my hands. Muscle pain mostly in my quadriceps, obliques, upper back, and neck. I have a very "stiff" posture and have frequently been told about my robotic-like gait when I walk. All of these issues are much worse after I wake up, and seem to partially fade throughout the day, but never really go away.
- A "wired-yet-tired" fatigue and excessive daytime sleepiness that makes me want to just lie down the whole day and nap it all away, yet makes such sleep impossible because of a pulling compulsion to be moving and doing something.
- Low appetite and a correlation in worsening symptoms and IBS from certain foods. I seem to handle gluten and dairy OK, but salycitates, and foods containing leptins, may be problematic. I eat extremely clean, believe me on that one, and have tried eliminating all of the purportedly problematic food stuffs, to little effect. Following an anti-inflamattory diet doesn't help much at all, certainly not enough to justify the food restrictions.
- A post-exertional malaise like effect if I even begin to push myself too hard physically. This is esspecially troubling seeing as how I'm in otherwise very-good physical shape, and can easilly run a 20-minute 3-mile and lift my bodyweight or more in several exercises, but I can't seem to do these things more than once or twice a week or I'm really going to pay for it. Overall, it seems like my body recovers from physical activity like a man 40-years older than me should.
- Orthostatic intolerance that has made me faceplant. Usually I manage to catch myself against a wall or door jamb, but one of these days I'm going to hurt myself. This also correlates to seeing stars when I'm feeling the fainting coming on, as well as if I simply blow my nose with force. Other dysautonomic symptoms like low body temperature (~97.0), borderline bradycardia (resting heart rate usually 40-50bpm), pre-hypertension (~130 systolic with a normal ~60-75 diastolic), intolerance to cold temperatures of any kind, hand and feet numbing and body chills on uncovered skin in temperatures under 75-degrees.
- Pervasive brain fog that I "feel" as a numbness in my frontal lobes, throbbing behind my eyes, blurred vision. Serious motivation, attention, and sensory-gating symptoms, which along with the pulling compulsion I feel to always be moving or doing something, earned me an ADHD-C diagnosis.
- Past symptoms of OCD/anxiety that have burned out to non-existence over the years. Instead, I have an everpresent fearlessness and boredom of life. This apathy leads me to try thrilling things like other ADHDers, but with a persistent anticipatory anhedonia that pretty much means I will only get into these thrilling things if they fall right in my lap. I also have a significant degree of consummatory anhedonia, but the anticipatory anhedonia is more troubling as it makes it difficult to find motivation of any kind.
In my mind, this constellation of shit all seems to correlate to sleep. Lack of quality NREM sleep prevents my body from properly healing/regenerating, which drives all of these physical, fatigue, psychological, and inflammatory symptoms I describe. My sleep is extremely fragmented, with at least 4-5 conscious awakenings per 8-hour period. A polysomnograph revealed no apneas, sub-clinical hypopneas, and no limb-movement disorders; however, the same sleep test revealed a REM latency of almost 5-hours, very little stage N3 sleep, and a spontaneous-arousal index of 12/hour.
It seems like my sleep architecture is right screwed up, but just the same, and maddeningly so as it leaves me chasing for answers, I know my body/brain are capable of reshreshing sleep because sometimes it happens. Note: when I'm talking about sleep quality here, that's exactly what I mean. I may appear to sleep just fine, because my circadian rhythm is pretty normal, and I don't have sleep onset or maintenance insomnia; however, it's obvious that I don't. I know this because I have experienced awful sleep, but also good sleep. Unfortunately, I haven't experienced a long enough string of good sleep to fully appreciate the benefits that come with it. In that sence, the poor sleep is recurrent, or even cyclic. On the other hand, there is no rhyme or reason to it, and the longest string of "good" sleep I can ever recall is 3 days. In the rare instance I do get refreshing sleep, all of the symptoms I mention seem to improve, I feel motivated and energetic with diminished pain, but with a sort of derealization anxiety that all seems to resemble a hypomanic episode. I can buy a bipolar-spectrum disorder as another probable diagnosis, but at the same time, I don't think sleep-quality is such a profound trigger for switches between bipolar depression and hypomania - especially in regards to the other CFS/ME and inflammatory-type physical issues.
Medication/supplement wise:
- Methylphenidate, as prescribed for ADHD, only has positive effects if I take it after an inexplicable good night of sleep. If I take it after my normal poor sleep, it increases the zombie-like fatigue, wired-but-tired sensation, and anhedonia.
- Medical marijuana, in the form of strains high in cannabidiol and low in THC, seem to help with the physical malaise for a short duration (1.5 hours), but unacceptably worsens ADHD symptoms and anedhonic symptoms. THC also helps relive my IBS-like symtpoms and make me want to eat, but the negative cognitive effects are too much to make this a viable, daily treatment option for me.
- Ibuprofen, in 600-800mg or larger doses, helps. It also causes a mood boost for me, which tells me there is obviously some sort of inflammatory mechanism, including low-grade encephalitis, also going on in my brain and body.
- NAG, NAC, omega-3 FAs, vinoceptine, B-12, 5-MTHF, chelated magnesium, GABA, aswaghanda, and other supplements recommended for CFS/ME and sleep might as well be placebos for me.
- Ginseng, eleuthero, tyrosine, mucana puriens, rhodiola rosea, ascorbic acid, and other energy/mood and catecholamine boosting supplements have a small, subtle positive effect.
- 5-HTP and melatonin can both knock me out to sleep, but do not correlate to an improvement in sleep quality. Both of these things also seem to correlate with a worsening of depressive symptoms.
- The right amount of alcohol is probably the most reliable treatment option in inducing quality sleep for me. Believe me, I know the science behind alcohol and sleep, but anecdotally, the correlation is too much to ignore. Unfortunately, it's all but impossible for me to use alcohol responsibly given that I am a (relapsing) alcoholic.
- I took a 6-month regimen of 100mg/daily doxycycline as a malaria prophylaxis in the past, which actually improved my phsyical and cognitive symptoms during the duration, but seems to have resulted in a persistent yeast infection. I have treatment-resistant seborrheic dermatitis on my face and scalp ever since, and a possible yeast overgrowth in my stomach during the duration of treatment (no probiotics or good food when you're deployed).
I realize this is a lot to take in, but I think it's important to be descriptive both for my own written record, as well as the benefit of people searching down the line. I have zero faith in my current health-care options, and am ready to seek a doctor out of my own pocket, but I just don't know how to find a competent, non-dismissive doctor. I'm not even sure how to accurately describe myself in the midst of my pervasive brain fog, which is why I take the opporitunity during rare, lucid moments like this. I also don't want a (IMO) copout diagnosis like depression, or fibromyalgia; I want to slay this beast so that I can pull that one foot out of the grave.
Thoughts, ideas, treatment recommendations?
Edited by Dichotohmy, 13 September 2014 - 10:36 PM.