Seeking perspective - and a hello

Discussion in 'Fibromyalgia Main Forum' started by crawlingtar, Nov 26, 2017.

  1. crawlingtar

    crawlingtar Member

    Greetings, all.
    I'm a 25 y/o male currently on medical leave from graduate school. I began my medical leave almost one whole year ago, due mostly to symptoms of extreme fatigue, lack of motivation, and depression. None of these are entirely new to me (diagnosed with major unipolar depression and GAD at 16, symptoms began at 12), but they have been getting steadily worse over the years. Thankfully my depression and generalized anxiety disorder are mostly under control, but it remains difficult to have anything other than a purely dysthymic disposition when you still have no motivation to do the most basic of daily tasks, or live. I will share my story as of late, and hope that some posters can offer perspective or insight; from that, I can only hope that whatever you may proffer may continue to help other seekers in the future.
    I had no idea about what fibromyalgia or CFS was until very recently. As a kid, I was diagnosed with obstructive sleep apnea and have been on CPAP therapy since, but it is not effective for... well, anything. No response in my symptoms. (My TMJ makes fitting any full-face mask all but impossible (very sizeable underbite), and medical tape and chin straps do not prevent me from mouth breathing at night, destroying my teeth with hours in a totally desiccated desert mouth.) My CPAP prescription has likely changed over the years, but student health insurance will not cover sleep studies - well, not fully: $400 at the very least. I am a lower class, first-gen college student. TAing will not cover that expense unless I decide to not eat for 2 weeks. In any case, doctors assumed my fatigue and sleepiness were attributable solely to my apnea and depression.
    I do not think this is the case. I am now at the point where my fatigue, weakness, drowsiness, and - ironically - night time insomnia make normal living all but impossible. I rarely leave my home; when I do, I begin feeling ill, confused, overwhelmed, angry, &c. Sensory overload occurs so easily, and recently I have begun have misophonic responses to certain noises, in addition to my long-standing condition of extreme sensitivity to sound. A loud bang or hearing an animal drinking water or bathing can decimate my mood for hours to come. This is both embarrassing and disheartening, as I love my animals dearly, but now can not consistently spend time with them.
    I originally stumbled upon fibromyalgia by searching Google regarding these extremely sensitive patches of skin that I get on my body. They are incredibly annoying and painful when I have an infection (been having recurrent over the last few months prostatitis, returning after a treatment of doxycycline). I now know that, in my case, these sensitive patches are dynamic tactile allodynia. But there were so many symptoms, seemingly unrelated, that were unified under the FM banner: TMJ, tinnitus (very high frequency whine like a CRT TV... had it for as long as I can remember, same with allodynia), allodynia, muscle pain, non-specific bone pain, depression, anxiety, sensory overload... and, perhaps worse of all (to me): cognitive dysfunction / brain fog / "fibro fog". My brain fog has only gotten worse over the years - and no, it is not "just" due to stress, anxiety, or depression. If it were, there should not be such an inversely proportional relationship. I have minor scoliosis in the lower lumbar spine, and I assumed this was where all my back, shoulder, and neck pain and tightness came from, along with my flat feet. Now I am considering that it may be an admixture between scoliosis, flat feet, and some kind of CNS disorder.
    I have Raynaud's syndrome or phenomenon - bone white hands and feet in response to even the most minor of temperature depressions. Often followed up by deep red fingers/toes which become painfully hot. My ears will also do this quite a lot. Lately, I have been experiencing my cold feet in bed (normal for me), but also an intense burning - simultaneously. It feels like my cold feet are being dipping in scalding water, or I am standing on blistering sand. Funny enough, cold water immersion helped with this temporarily. I have to wear gloves most of the time now, as I am trying to keep from getting nerve damage (or more nerve damage, I don't know), as my fingers/toes can frequently become numb and stay that way, after warming them up, for upwards of 10-15 minutes. I frequently get the sensation of being chilly or cold, but also waves of heat over my torso. Cold and hot at the same time, basically.
    Typing on the computer, using my mouse, holding my phone in bed, &c. &c., has been bothering the nerve which passes by the "funny bone." It causes the characteristic numbness/tingling in my pinky and ring fingers if I am not careful, along with some tingling along the nerve, and a feeling of pressure near the elbow. I know I mentioned fibro fog a bit ago, but I want to expand on that a bit (forgot to earlier! - ha): forgetting the topic of conversation while in mid-sentence; forgetting what I am doing mid-task; staring blankly at my book, notebook, phone, or computer screen for several minutes, only to realize this is happening and snapping me back into "what the hell was I doing again?" mode; pausing every so many words in conversation because I "lose" my sentence; a profound inability to do any form of spatial reasoning or all but the simplest mental math... it causes a lot of self-confidence, and is part of my isolationism in social settings. I am in a PhD program in physics and cannot add a small 2 digit number to another.
    A bit concerning is that some of my symptoms are leaning toward the "early MS" realm, now. Although not dizzy or light-headed per se, I have, for the past few days, been having trouble walking straight, especially if I do not watch my feet. I "feel uneasy" in my steps, and they lack the common sort of grace any average person walks with. Each step takes a lot of concentration to "land" right, and I feel like I am wearing high heels or something - like I am just about to roll my ankle or fall forward because I don't place my foot down correctly. I don't notice it much walking around the house, and now since it can be so subtle, I keep thinking I am psyching myself out. I have always had on/off minor tremors in my hands, but I have lately begun noticing my fine motor skills are a tad... rusty. Grabbing my pills, turning pages, picking up a guitar pick, sometimes aiming my mouse, typing on my phone (this pisses me off so much!), typing on my keyboard... it goes on. It causes frustration which obviously makes it even harder to work with these things. I also have visual snow which is mostly only seen in low light or when my eyes are closed. Sometimes when standing up quickly, I have a super loud ringing in my ears (or in one ear), sometimes a super loud roar, and my visual field is filled with visual snow, oftentimes blue and green, sometimes red. I get dizzy, light-headed, confused, &c., from the sudden blood pressure drop.
    Aside from all this, I should mention at ~13, I was diagnosed with a brain tumor in the pons region of my brain stem. (Eyesight started declining around this time, but I can't recall if the cranial nerve in that area can affect sight. These days I'm at 20/400ish or 20/500ish in either eye.) A few months later, a neurosurgeon determined that this tumor was likely not a tumor at all, but an arteriovenous malformation. We monitored it regularly with MRIs until I lost medicaid; the last 2 or 3 scans didn't show any abnormality in my brain at all, even with contrast: it disappeared entirely. The symptom that caused me to first go to a neurologist (hemifacial spasms) still persists.
    I'm sorry if this was way too verbose. It is encouraging to find a community of folks with some similar experiences. Overall, my pain isn't nearly as bad as many of the folks on here: my main problems really are my brain fog, fatigue, and muscular weakness. They are very disheartening, and make it so painful to try and do my work as a PhD student.
    O! And I just remembered: I have had issues with hypoglycemia since childhood. Never knew it until undergrad, when I mentioned my symptoms to my mom. Panic, dread, profuse sweating, blurry vision, extreme weakness, lack of coordination, insatiable "hunger" (can feel it even when you're full! - it sucks). There was something else I wanted to mention but I cannot remember it at the moment. For the record I'm on 150 mg Nuvigil daily, 300 mg Wellbutrin, 20 mg Vistaril BID, 10,000 mcg biotin (my hair is basically straw, this change also occurring around 13 y/o; unfortunately, several months of biotin and no noticeable results yet: even my index and middle finger nails have that "droop" in the middle of them). Got checked for ADHD at my grad school, and they found significant symptoms of inattention and "mild impairment" in the mental math/reasoning area; overall, no LD because my verbal and abstract reasoning was 130, so it bumped my full-scale IQ up quite a bit, and my "impaired" category (100 points) pulled it down. Results were too skewed and they determined a FSIQ wasn't a good indicator of my aptitude.
    Please, if you have any questions, comments, or suggestions, feel free to post. I look forward to hearing from you. Used to I would proofread all this and fix it, but these days it's just an exercise in frustration.
    Edit: an additional annoyance as of late includes recurring angular cheilitis.
  2. bct

    bct Well-Known Member

    Hi Crawl. I have ME and a bunch of other maladies, but yours sure take the cake! I hope you get some help from this group; messages don't always appear as "new" for some annoying reason, and I had to track you down with going to each forum. I am too wiped right now, but am hoping this short, welcoming post will appear somewhere....o_O.

    Best Wishes,
    Barry
  3. rockgor

    rockgor Well-Known Member

    Hi Crawl

    Welcome to the board. Let me give you a quick tour. If you click on "Forums" at the top
    of the page, you can see the table of contents for the different boards. The porch, where
    "The Porchlight is On" is a thread with no topic. Folks just drop by and talk about what
    is going on with them. A good place to chat about kids, relatives, pets, TV shows, movies,
    books, old music, new recipes, pet peeves, etc.

    You can find the board rules at the top of the page (blue line). We avoid contentious
    topics like religion and politics. Click on "Shop" if you want info about supplements.
    "Supplement News" has reports about developments; research; etc. There is a tool bar
    at the top of box where you type messages. You can change the font, add color, etc.

    If you click on a poster's avatar, you can get some info and pull up posts from the past.

    I have CFS; very little energy; was born during the Roosevelt administration. Thank
    goodness I've kept my stunning good looks and sense of humor. Understandably, this
    board is my social life.

    Feel free to ask questions. There is usually somebody with helpful info.

    That's some list of ailments you have. Oops! Gotta go. Back pretty soon if not in a
    Jumping Jack Flash.

    OK, Back.

    P. G. Wodehouse wrote a short story. I think it was set at the Droigate Spa. The
    sickest, the ones with the most medical problems, the survivors of the most surgeries.
    were greatly respected by their peers. I think you would beat any of the characters
    in the story.

    I have been thinking of writing another letter to Congress. I want them to pass a
    law. Nobody can have more than one major medical problem at a time (or two
    minor ones). I have written before but for some reason I never get an answer.

    It's really unfair that you should have all these problems when you are so young. I
    was somewhat older when I got derailed. Took me 6 years to finish law school.
    Practiced for another 6 years. Then worked as a part time paralegal for 20 years. Retirement is really boring if you can't drive, travel, participate, etc. Fortunately I
    can still read and visit the Pro Health Board.

    I have suggestions for future posts. Some folks here have visual problems. So
    double spacing between paragraphs helps. And if you click on the second "A" at
    the top of the message board you can make your font bigger. (This font is no. 5.)

    Best of luck to you
    Rock
    upload_2017-12-2_11-47-6.jpeg
    Last edited: Dec 2, 2017