This is my first post here. Hope I don't shatter any forum rules, but I don't know where else to turn and this seemed like a good place to seek some advice, or in the very least, vent. -- WARNING: I tend to write A LOT.
I'm sorry if this is too long to read, but I want to be absolutely clear in communicating all of this. I completely understand if any of you opt not to read it.I'm going to describe my condition and then provide my story, as it may help paint the picture better. If you want to SKIP my story and just see what I'm feeling today, read the first few paragraphs below this. I hope you will read it all anyway, but I'm not gonna force ya.
Let me start off by saying that I never try to diagnose myself by any means, nor am I seeking any of you to magically do the same. I leave that to the professionals. I am truly at my wits' end, but by no means suffering from depression or suicidal thoughts or anything crazy like that. Strong like bull! That being said, let me shed some light on who I am and how I am. And by the end of it all, who knows, maybe one of you will have some information for me that can help. If not, at least I'm getting it off my chest.Section 1: Why Am I Here?
The reason I'm here posting in the Fibro section is that, ever since I learned what Fibro was a decade ago, the symptoms just resonated with familiarity with me. As I became older and did more of my homework, I learned about
how the nerves can be affected, and having a sensation in every inch of my body would make sense if all my nerves were shouting. I'm not a doctor, but I know what I've felt for the last 14 years of my life. I've looked into other similar conditions and Fibro just hits so many more of the symptoms than everything else. But I'm not a doctor.Section 2: And Just Who Do I Think I Am?
I'm a 27 year old white male from New England, turning 28 in September. I'm 5'8, 183 and always had/have a pretty athletic build, though I gots me a little round tummy the past 7-8 years from slowing metabolism, but I still appear to be in-shape (though I'm kinda not). I don't do any drugs, I've never been a smoker (lived with one for most of my life though), and I hardly ever drink. I know, I know, I'm a bore! lol
I am not diagnosed with anything, nor do I take any medication. I only take 2 vitamins as suggested by my new-ish doctor, after more recent blood tests: Vitamin D (deficiency) and Vitamin B Complex. Been taking these daily for maybe half a year now. I've been to 3-4 psychiatrists (one time each) at my mother's suggestion but I was easily found as mentally healthy every time. I'm a very stable dude, I have no criminal record, no driving record. Mental Illness does affect some of the women in my family, but I've never been suspected nor do I feel I should be. I do have an aunt that was diagnosed with Chronic Fatigue, possibly two (not sure if the other was officially diagnosed. That one gave me a book on Fibro though so she was experiencing something, at least).
I have been unwillingly unemployed for roughly 7 years and I hate it. I'm a great, hard worker and I love making money, but my condition, whatever it is, doesn't let me be that way anymore. I've tried playing Semi-Pro football 3-4 different times. When I was 21 I played the whole 8-game season as a backup running back, but when I tried returning the next few seasons I found myself quitting in the pre-season each time. It was just too much for me somehow.Section 3: *****What I Feel: *****
It's been pretty consistent for the last 14 years. I am exhausted all throughout the day in every sector of my body. The exhaustion is either bad, really bad, or unbearable. Maybe once every 1-3 months I'll have a day where I feel great, and I'll be motivated and want to accomplish everything. I dream of the time where every day could be like that. Along with this fatigue is a lot of pain and soreness, definitely worst in every inch of my legs, though noticible all over my body. I feel my heart beat all over whenever I'm sitting or laying down, even in small, specific places like my pinky toe or my eyelids (just examples. I feel it everywhere, my legs by far the worst).
Every time my heart beats, my pain and fatigue is echoed all over with a fresh signal of utter discomfort. My legs scream with fiery pain and agitation. I get the "pins and needles" feeling most of the time on top of it all, and I often describe it as "feeling like when you wrap an elastic really tightly around the base of your finger to where it starts to turn a different color, but instead that's both of my legs, and to a lesser extent my whole body." Whenever I'm relaxing I feel like I'm experiencing comfort and discomfort at the same time. When in a relaxing state I feel like there's a grocery list of different sensations going through my legs. Relaxed, stinging, humming, tired, pain, pins/needles, throbbing, fiery feeling, you name it. It's a mess. I also feel some of this in other places, like my arms and hands for example as I write this. But the legs are what do me in the most.
I know the difference between my body being sleepy and fatigued. This is most evident when I wake up in the morning after a full night's rest. My body isn't sleepy-tired, it's just completely drained of all energy. If that makes sense. I feel like I go to bed with 10x more physical energy/ability than when I wake up. My body just feels sooo heavy and that it takes all my strength to lift it up, even from a chair. I felt this way even when I was in the best shape of my life.
Speaking of strength: I'm a very strange combination of strong and weak. My muscle power is very impressive for someone that doesn't really work out. A year ago I did curls (52 lbs, sets of 8-12) but wasn't able to sustain it more than a couple months. I can do many physically demanding tasks easily like lifting (with arms and legs) heavy things, but at the same time just going down my steps each day my legs wobble with weakness.... How can this be? My arms are pretty big considering I don't work out, and I know I'm strong when it comes to applying lots of force, yet when I simply lift myself up with my arms on the kitchen counter my arms start shaking a lot immediately, even though I can hold myself up.
I don't know if I'm atrophied or not, probably to an extent. But I dunno. It's just very weird to be so strong and so weak at the same time.
I feel like the only upside to all of this is that when I lay in bed at night, I usually pass out pretty quick, even if I'm not tired, because I always feel exhausted so my body probably allows itself to conk right out in attempt to regenerate. This actually isn't a "plus" because the neurologist said it's not natural to be able to sleep at any time during the day at will, which I kinda can. Like I said, the mornings are the absolute worst for me. I wake up feeling like I just ran the Boston Marathon. My legs are pounding, I barely have energy to lift my head, and I often have to wait an hour or more to get enough energy to get out of bed. Unfortunately this leads to me falling back asleep (on accident, sometimes on purpose) for several hours, even if I already got enough sleep. Then I wake up and I've overslept, feel just as bad as I did the first time I woke up, and half the day is GONE.Section 4: Doctors
I started seeing doctors around 16-17. The only words I heard were "I don't know". Many didn't really try at all to figure it out. One guy took, and I quote, "a stab in the dark" and prescribed me Zoloft, claiming that at lower doses the psychological effects wouldn't show but I could possibly feel better... Yeahhh, Day 1: I ended up MORE tired, yawning so wide in school that my jaw hurt, and I felt like an alien was living in my skin, artificially happy and giddy. I hated it. I've never had a mood disorder I've always been mentally healthy, and now I feel like someone fake is trapped in my body and they are living my day and I'm forced to watch jailed inside... All this was just one day on Zoloft! lol. So yeah, I stopped that immediately and stopped seeing that doctor.
I had a sleep study done, but they didn't put sensors on my legs so they couldn't conclude restless legs syndrome. I didn't go back. I've seen a Rhumatoid specialist, a neurologist, and I dunno what else. I used to go to a great chiropractor and he was kind enough to take me in as "research" so I didn't have to pay. He really wanted to see an improvement in me, and while he didn't cure me, I no doubt felt better and looser after an adjustment. I want to go to him again (or someone as good), but like I said, it's so hard doing anything that isn't in front of my computer screen.
I saw a fibromyalgia specialist when I was 17 (along with several other doctors), but for years I didn't explain what I was feeling very accurately, I didn't know how. The Fibro lady didn't seem terribly interested in figuring me out, but maybe, based on my immature descript
ion, she simply didn't think it was fibro. I'm older now, and have since tailored a more precise way to describe it. For example, when I was 17 I kept mentioning the FATIGUE, and not the PAIN. I didn't even know it was pain really because I was so used to it. I thought it was a bi-product of the fatigue. I would think, "Hey, I played through pain all the time in football, but you can't play/live through fatigue as easily, not without noticing it anyway". I figured that even if I was uncomfortable, I could get through my day fine, but if I was really fatigued, it would be so much harder... Boy was I WRONG. But hey, I was 17! I know now that pain AND fatigue together are a pretty mean combo, and one should not be any less respected or suspected than the other.
Early 2011 I started up the doctor thing again (every few years I shrug off the disappointment and try and get the ball rolling once more). My doctor at the beginning of this year used to always mock me every time she saw me because I tried to do a lot of research online. She would always smile real big and laugh and make a joke about
the research I did, "Oh, because you would know, haha". Three visits with her and I was done. My "Mock Doc" suggested (as a guess) acupuncture, but due to financial constraints I never pursued it cause I wouldn't be able to keep up with the costs. She knew I had no income, too. She quit the profession a week before I was officially replacing her, coincidentally enough. Guess her heart just wasn't in it anymore, if it ever was... Not like peoples' health is important or anything though.
I'm with a new doctor now who seems to genuinely care (she came highly recommended), but we've only tried a couple things and I haven't seen her in months. She had my blood tested a couple times and in addition to Vitamin D deficiency, she found my testosterone was low. She put me on a low dose of testosterone (patches) for a few weeks, but an Endochronologist(sp?) told me that my doc jumped the gun a little bit, but had good intentions. I need to take a morning blood test still to determine my true testosterone levels but I'm having a hard time getting up in the morning to go. For now the Endo doc had me stop the patches. She was very nice and seemed on-point.
I'm going to see a fibro specialist when I can. It's just so hard to accomplish anything on my to-do list because of how I feel. It's hard to get anything done. If I run a quick errand and come back 10 minutes later, I just collapse into the nearest chair or bed and sit there because I don't have the strength to move, after barely doing anything at all.Section 5: Other People & My Condition
How do you start the day when you feel like you just finished one? I also often describe it by asking people if they remember being really, really sick with a flu or something, and their whole body ached and they couldn't even try to move from their bed, and they were just glued to it all day, like they weighed 10,000 lbs, and they are so obliterated they have zero motivation to accomplish anything that day. Everyone always says yes. I tell them that this is how I am just about
every day for the last 14 years.... They give me a strange look, half shocked, half confused. They don't really know what to say. A moment later they are probably thinking "yeah right, exaggeration" or "wow... he sounds messed up... I hope it's not contagious..."
Like I saw someone else say, I don't really bother explaining it to people any more. That other poster mentioned people's "eyes glazing over" and that's the exact same thing I've noticed. It sucks the most when your own family and friends stop caring, or believing you, or will often question why you don't just get up and do X as if there's no problem at all. They don't understand, no one I know has. Some days they want to understand, but other days they just can't fathom how someone could be this way, and therefore they occasionally don't think you have anything wrong outside of JUST BEING LAZY. That's the worst, when people, especially those close to you, think you are just lazy and want to be a leech your whole life, WHICH IS NOT TRUE FOR ME!
I don't want to say "I'm crippled" by this mysterious ailment, as I think truly crippled people have much more of a right to use that term. But in a way my life has been crippled by it, and continues to be. I've been unemployed for 7 years, I want to work sooo soo bad, but I know I would just struggle with a job. My last job I got promoted so I had to
open the store, and I started to become late in getting there in the morning, eventually getting written up. I finally quit for several reasons in addition to not being able to consistently get to work.
I don't want to be a leech. I love my independence. I love working. I love sports. I love going out and doing things. I love getting things done. But I don't have any of these things right now. My girlfriend of 1.5 years is now recently being less patient with me and my condition, more frequently saying things like "you should chip in around here", "why don't you get a job so you have money", etc etc and it sometimes starts fights with us. This is how it goes. People that care about
you are there at first, but then after a while with no improvement they lose faith in you and no longer empathize with you. That's when you start seeing the looks on their faces, as if they are calling you "lazy" over and over again in their heads.Section 6: My Story
(SKIP THIS if you want. Many details are not about
my condition, but I will make the important physical parts bold for skimming)It all started when I was 13. I came home from pop warner practice and I just collapsed my exhausted body into the chair in the kitchen. I was as dumbfounded as I was tired. My legs were killing me. I didn't wanna move. I had never come home from football so drained before, it didn't feel right, especially halfway through the season when my body is used to the exercise. I was in great shape at 13
, had myself a little sexy 4-pack, not to mention all my life I've always been THE dominant sprinter in every league (baseball + football) I played in, that's what I was known for and borderline famous for in town.
It didn't go away. It hit its hardest my Sophomore and Junior years in high school
. I had a job when I was 16, I loved working at the bank. I ended up getting a new teller position nearby when Junior year started, working part time. Not long into junior year, however, my condition had got worse than ever. I had so much trouble getting out of bed and getting to school.
I was either late or absent so many darn times that teachers had meetings about
it and I got "special help" getting the assignments and homework, because I missed so much school. I was a good student academically, but my grades were suffering from missing so many classes.
It was taking its toll on me so badly that, inexplicably, I quit football. I quit my job, and I continued to struggle just to make it to school. I've loved my sports all my life, so the thought of me quitting still astounds me to this day. To add salt to the wound, I even missed my golden opportunity for a study date with my high school crush because I just couldn't lift my body that day. Missed the whole day and our study thing scheduled after. Regretted it for a long, long time.
That junior year is when I really started making the rounds with doctors (seen above in Section 4). I BARELY passed junior year with enough credits, with help from a summer school class I completed. I started off my senior year surprisingly well with attendance. I was getting up around 5am automatically, easing into the day. I dunno, I was functional for the first time in a while.
I found out that they were removing the credits for the study I was in, the one that helped me get my assignments and keep me on track and all that. I shrugged it off, I was probably fine.
Then my evil guidance counselor wrongly told me that she would blow the whistle on me if I played football senior year, due to my grades junior year. I should've known it only applied to CURRENT grades. I played anyway. She found out the second week and had me removed from the team, again, wrongfully.
This was a big blow for me, but I tried to shrug it off and I kept going to practices (I just couldn't play in games). After a few weeks of that I quit, it was too insulting and angering. October-November I was doing okay with attendance, but I soon learned that even with a complete year I wouldn't have enough credits to graduate. That's when I realized the study credits removal just cost me my diploma. After consulting and being told there's nothing I could do, I dropped out, and the following summer got my GED.
My condition, never fully having left, came back to full-strength and hasn't weakened since. Every year since high school has just blown right past me. My life, often full of inactivity, had all the years blending together because nothing was changing. Time was in fast-forward (and still is sometimes). A week felt like 3 days. A year felt like 4-5 months. I would sometimes lose track of what year it was, and even worse, my age. I'm serious.
I was, and still am, stuck in a rut. I want to break loose, but I know I need help to do that. I would love nothing more than to just fight my way through it with WILLPOWER and POSITIVITY and HAPPY THOUGHTS, but that's just not realistic for me. Most people in the world don't *act* better until they *feel* better, and I'm one of those people. I'm not one of those magical morning persons who cartwheels out of bed in the morning, yawns, stretches and greets the birds with a song and a jig. I'm not one of those people who can say "well isn't life just grand!" and run around frollicking through the day with invincible optimism. Can't do it, I'm not an alien, lol.
I'm already asking a lot from you guys in wanting you to read all of this, but I'm also looking for guidance, advice, what worked for you, what didn't. Doctors, medicines, remedies, anything. I'm totally lost here. I actually broke down in tears earlier tonight.. something I only do like 1-2 times PER YEAR...
I was just thinking how I felt like I needed to go to rehab or something. And that's when it hit me... I pictured the kinds of people who are in any rehab of some sort, and how they can't do it alone, and how they really need a lot of help and support. And it made me feel like I'm in the same boat... It made me realize that maybe, just maybe, I'm in over my head with this condition like other people are with theirs. I want to be strong and tackle this on my own, grab life by the horns, but even though I've said "I can't do this alone", tonight was the very first time that I truly FELT that way, and it really affected me.
I'm sorry again for writing so much. I'm not a guy who ever gets to vent or talk about
anything like this, so it's all just pouring out of me. Any thoughts and ideas and experiences you guys can share would be most appreciated. I'm dying to know what may have worked for some of you, and I'd like to know your personal opinions on if you think my condition is Fibro or something else. I will still see a specialist anyway, but knowledge is power, and I just want to absorb as much as I can before going into the doctor's office again. Maybe you guys know better ways to describe what I'm feeling to a doctor so they can better understand and help me.
Either way, I thank you for your time.