Well, I’m a 32 (now 35 *edited 2/9/2018) year old female who has been battling chronic illness, with a variety of diagnoses. There is likely an umbrella illness causing them all… like a domino effect. I am hoping that someone will see my blog who shares the same symptoms as I do, to see if maybe we are suffering from the same thing. I have met several other people who suffer the same symptoms that I have, and none of us have concrete diagnoses.
My symptoms include, but are not limited to the following:
Tight / crushing /pressured chest, tight lungs, weak lungs, tight airways and trachea, can’t stand most of the time, can’t walk much, can’t exert, feeling like blood is slow at reaching my brain / head, sluggish blood flow, heart very slow when standing up– then very fast at times too, blood flow seems to almost get caught– as if it is clogged somewhere, carotid artery test showed occlusion, pressure in chest, difficulty breathing, labored breathing, air hunger, having to yawn to catch a deep breath (at times), difficulty swallowing certain foods and liquids, tightness in throat when or after speaking for 2 minutes which then resets after 20 minutes or so, intolerance to heat and humidity, flu-like feeling in my body, chills, hot flashes, hot and cold at the same time sometimes, muscle wasting / atrophy (from sitting around too much I guess), thick viscosity blood (from being inactive), weakness in limbs (that started before the sedentary lifestyle, when I was a very active person), fragile windpipe/trachea/lungs that close up with the slightest motions such as cleaning and minimal exertion, jello-like feeling in legs, weird feeling in arms, wirey and jittery feeling in body, electrified body, chest is like a bunch of wires with electrical currents, numbness in limbs, “confused” limbs, uncoordination, confusion when switching fine motor tasks, vertigo after moving period, vertigo in general, lightheadedness, inadequate blood flow, numbness in extremities, easy bruising (part of the EDS), gait issues when walking or pivoting, depth perception is altered, nystagamus, gastro issues, stomach pain, nausea, food slow to enter stomach, have to “graze” to eat, can’t eat full meal, can’t tolerate hot foods, can’t tolerate ice or very cold food (closes throat), dizzy eyes, dizzy back, dizzy neck, pain in eyes, light headache, frequent migraines, frequent migraines behind eyes and in head, constant sinus congestion, tight nasal passages, flu-like feeling, weakness all over, malaise, “viral” feeling almost all of the time, tired / fatigue in body and mind, nervous system shutdown or overload when changing temperatures, convulsions during sleep, rarely convulsions awake but it has happened a few times, brain “zap” feeling, zap feeling in eyes (feels like fireworks), feeling of cold or ants crawling on scalp, intense itchiness (comes and goes), phosphenes in eyes at least 3 times per day, numerous eye floaters, jaw clicking constantly, unable to keep jaw open, hypermobility in joints, joints all click, tremors, inability to exert myself, if I exert myself I am winded, fragile airways and torso– aggravated by bumps in the road in car / singing/ laughing/ crying/ talking/moving/walking, hyperacusis (sensitivity to sound, inability to listen to loud music, tinnitus, ear pressure, ear static / muffling when I speak, can’t tolerate loud sounds, intolerance to “good” feelings (*I explained this in another blog post, click here*), head pressure, head pressure worse when speaking, discomforting to speak, heavy chest, angina, caffeine and aspartame intolerance, sensitive to cell/tv screens (makes vertigo and eyes worse– brings on a “seizurish” feeling, photophobia (sensitivity to light), lump in throat (off/on), tight throat, racing heart- mostly only with light exertion. If i just sit here my heart won’t race unless I eat something that makes it race. It is often hard to eat because of my airways getting so inflamed, narrow, and non-elastic. When I eat, the food feels caught. My brain shakes in my sleep. I have near death experiences during sleep as well as sleep paralysis, apnea, and astral projection and other nocturnal events. (In fact, I theorize that my intense ability to astral project may have caused my illness; or maybe my soul is too exploratory and keeps ignoring my body during sleep. That’s another topic in itself!!) I have severe interrupted sleep. When I’m tired or woken up from sleep, I’ll almost always have a seizure or convulsion of my brain. I have also dealt with exploding head syndrome off and on. I can see my heartbeat in my eyes at least 50% of the day (a dark black spot rhythmic with my heartbeat). My neck feels tight. Can’t bend neck downwards. Nervous system overload. Nervous system shutdown. Nervous system overstimulation. Everything seems to be made worse by exertion. When I look at a computer screen, cell phone, etc., my brain feels like there is fireworks going off. I am sensitive to electricity too, because if I leave something plugged in next to me during sleep, I’ll wake up with “fireworks” in my brain. I always have a “seizurish” feeling in my brain, almost like I have 1000 mini seizures during the day. I also can’t go upside down. I can barely exert myself at all. I am winded and out of breath with minimal exertion. I can’t pant. I can’t expel air properly I’m told. I have a blood rush sensation with every single move I make (due to lightheaded). I am borderline passing out all the time. I can’t lie flat on my back without major breathing and lightheaded issues. I also have weird sensations in my limbs. They often feel numb (and no, I’m not an idiot– they’re not ‘asleep’). I also have bouts of uncoordination. I’ve taken showers and didn’t feel the water on my right arm but felt it everywhere else. Sometimes my right arm feels like it doesn’t even know what to do, like my mind tells it to do something and it is delayed. My hands hurt badly, but that’s not a big deal. My legs feel like I have to consciously remind them of every step. It’s not automatic like it used to be. Cognitively, I am in decent shape. But I have noticed changes. I am forgetting lyrics I’ve sung since I was a small child. I’ll forget the weirdest things. I don’t feel absent-minded, as I’m highly alert, but I think I’m too alert, so I am always looking outside the box instead of looking inside. I overthink things so much that sometimes I’ll hear random thoughts upon going to sleep… random fragments that made NO sense. Like, out of nowhere, I’ll hear myself say, “Yeah, I turned it up.” It’s weird. It’s not an actual voice, but a thought. Also, I lose my train of thought with almost every conversation. It is SO embarrassing. My mom said one day that my thoughts were all over the place. Hey, at least I was consciously aware of that. She said I was manic at the time, which I think I was. But I had just gotten out of a tough situation and was severely stressed for that night, and I was withdrawing from a medicine. I have sensory overload, hypersensitive nervous system, shiver or tickle down spine when you whisper in my right ear, hypnogagie, extremely painful menstrual cramps, abnormally cold chills at times, suffocation feeling in neck and head, eyes shaking especially when I wake up, feeling that my head isn’t getting enough blood flow or oxygen, dark circles under eyes/ eye bags, hair thinning in certain areas. I CAN WALK, but not far distances. In fact, most of the time I can only walk for about a minute, and then I have to take a rest for 20+ minutes. There are some instances I can walk for 10 minutes, but with extreme discomfort, and I still have to take a seat. For instance, if I go to a store, which is rare, I will sit down somewhere every now and then.
Update as of 5/2016: Since writing this blog post, I have developed extreme leg and back pain, but that’s mainly from being so sedentary. I was told the other day I have Spina Bifida Occulta at S-1. I have developed more numbness in my hands and arms. My right leg is in excruciating pain almost all of the time. The chair I sit in all day is messing up my back. You may think, “Just change your chair.” This is not that easy. I am practically helpless. I can’t even lift a chair. I have no money. I’m at the mercy of others! Also, I have Degenerative Disk Disease with a herniated disk; I’m not sure if I mentioned that one before. I have chronic back pain. My right hip has gotten worse and dislocates often. I was told by a doctor that I have hypermobility and EDS (Ehler’s Danlos Syndrome). The sensitivity to sun has gotten so extreme that I can barely go in the sun at all anymore without feeling like I’m going to pass out and having a flare up in many symptoms. It doesn’t even matter if it is 30 degrees outside; if the sun is beaming down on me, I feel hot and near-syncope. My heart will race. And I have 100 other issues in it. Anyway, all of the other symptoms that I mentioned before this update are still present.
Usually, my breathing symptoms are the worst. When I’m in the heat/humidity, my airways often close up to less than a straw hole size. That also happens after talking for too long, from getting out a loud laugh or cry, from moving my torso too much, or from stress. The breathing symptoms are beyond suffering. Doing too much makes me not only suffer, but it makes me feel like I’m dying as well. It makes it almost impossible to get air in. Yes, air gets in, but that’s just because I take it easy and rest my airways. If I continue moving too much, the airways will close up completely– and yes that has happened to me before. We need to breathe– it’s a necessity. So, I am severely limited by this symptom.
Even though a couple symptoms started in 2002, the pile of symptoms progressively became worse. That is why I feel I have a progressive disease; or maybe I have done damage to my body repeatedly. I never told a doctor about my sleep seizures/convulsions in 2002, because they were not severe. I’d have them about twice a year, if that. The first time was really scary, but I chalked it up to a weird nocturnal event. Throughout the years, the seizures became severe. Even in 2008 and 2009, I was battling the nocturnal seizures almost nightly, BUT they weren’t violent like they became a few years later, in 2011. By 2013, they were so severe that I just could not tolerate it anymore.
The lightheadedness actually started around 2002. I actually had to quit a job due to feeling so lightheaded in 2002. I was too embarrassed to tell anyone at the time. It went away for a while and came back in 2004. I felt extremely lightheaded on a daily basis. I remember taking a weight lifting class, and I always felt like I was borderline passing out. Again, no big deal. I did see a doctor, who told me everything looked fine, so I dismissed it as just feeling lightheaded. It was tolerable, though. I was able to go to school, work, and function in life at the time. It left for a few years and came back full force in 2009. Again, I was still functioning… working daily, etc. By 2011, the lightheadedness became severe and intolerable. It got a bit better but not much… but by 2015, it has hit its peak as the worst it has ever been. I am constantly seeing phosphenes (stars) in my eyes. I constantly feel my blood rush. Not just when I stand up either… when I move my arms, when I put my hair up, when I do ANYTHING. That is why I KNOW it is not anxiety!!
I noticed around 2005 that when I would sing really high notes at high volumes, I’d feel extra lightheaded. I chalked it up to me running out of air, no big deal. Never told a doctor about it.
In 2006, I had a weird sensation on my scalp. I dismissed it, because it really wasn’t disabling me. (I’m the type of person that I don’t go to the doctor unless I feel severely in distress. Looking back, I should have gone.) The scalp felt like there were cold ants crawling. I’d have to reach my scalp, and I’d grimace in “pain”. It wasn’t an ouch-pain, but almost like a freezer-burn pain, but without the freezer burn location in your brain. It felt like something was crawling, but it was probably a nerve that was messed up. In fact, THIS symptom I will admit I do feel was anxiety/stress. Everyone has stress and most people have some sort of physiological stress manifestation, whether it be headaches, body pain, etc. This symptom only lasted for ~4 months. I was getting the attacks about every 20 seconds throughout the day. I was working a job that stressed me out big time.
In 2006 or 2007, I did have an episode of air hunger, but only while walking. It went away after 3 weeks, so I dismissed it. By 2011, I was yawning constantly (yawned to take a deep, satisfying breath).
In late 2006 or early 2007, I developed constant neck pain. I did go to the ER for this, as I was in a lot of pain. I could barely move my neck. I took a vaca to Florida with my ex. When I got back from Florida, the neck pain wasn’t as bad, but I developed SEVERE vertigo 3 weeks later.
The vertigo was intense at first, and I had to quit my job. I got an office job in two months, since I could no longer work a standing up job. I got my life back because I was now working again, but I still battled vertigo constantly.
I started feeling very lightheaded from LAUGHING back in 2007. Again, no big deal. I didn’t pay much mind to it! But eventually that too got worse.
I started feeling like I was having issues shortness of breath in 2010. I first noticed it at a wedding in December of 2010, while dancing. I was like… wait… why can’t I dance like I used to? Why am I SO out of breath? I was not out of shape either. I literally danced for 2 minutes and was out of breath. It was more so the motion of my torso that did it, I think. Then, singing became hard. I was still able to sing in 2010-early 2011, BUT I felt extra lightheaded when doing so. When I used to be able to sing 10 songs back to back, I was then only able to sing 3 songs back to back. Now, I can barely sing one song straight through. I can sing it, if it is low volume and something that doesn’t require too much panting. I can’t pant at all– that’s part of my breathing issue. I did spirometry tests, and I was told I only use 30% of my lungs.
Prior to that wedding in 2010, I was exposed to chronic carbon monoxide poisoning in my home. I was severely dizzy everyday. Then, I finally called the gas company and they detected the leak. I was an idiot for letting it get that bad. Could this have something to do with it? Possibly, but that would not explain all the issues prior to this.
Since I was a kid I’ve had loose joints but they weren’t really the worst thing in the world. My right hip would come out of socket or loose, and my right shoulder– forget it! It never felt right. My knees would snap , as well as my ankles and other areas.
The heat intolerance technically started in 2007. I remember going out with my best friend Andrea to festivals, concerts, and the park, and I would only be able to withstand about an hour’s time outdoors in the heat and humidity. By 2011, that was decreased to maybe 20 minutes, if I was lucky. By 2015, it has gotten much worse. I have barely been able to get out in the heat and humidity for more than 5 minutes, depending on how bad it is that day. (Some days are brutal.) Prior to 2007, I could be in the heat for hours at a time. I do remember in 2007 going to Florida on the beach and having to leave after 30 minutes because it was so hot that I felt that I’d “faint”.
ALL OTHER SYMPTOMS pretty much came on around 2011 and haven’t left. Some symptoms came around 2012 and haven’t left.
Overall, even though I was feeling horrible for years, it didn’t get truly permanently disabling until 2011. I always tried to wear a mask around others. I still wear that mask, but it gets really hard bottling everything in. You’re not supposed to bottle it all in. It’s not healthy. I should feel comfortable to admit I’m sick, but I’m not. Most of my friends don’t know I’m sick. My best friends know, though. Even they often forget, because I don’t usually remind them of it or even talk about it. I constantly feel the need to explain myself to my family, though, and that’s simply because they see that I’m not doing much, and I have to explain why. Or they’ll ask me to go somewhere and I have to give my reason why I can’t do this or that. (That does happen with friends, too.) It has gotten quite hard to not grimace or show my distress. It’s like a terrible constant pain that is hard to hide. When you hurt, you hurt! At times, when my symptoms aren’t so severe, the mask is easier to wear. But it’s weird… if I wear the mask, people assume I’m fine. They say that I was laughing, smiling, having a good time. I never feel fine. But then when I DO show my symptoms, I’m told, “You were just fine an hour ago.” Just because I appeared fine doesn’t mean I was. What usually happens is the symptoms get worse and then it becomes almost impossible to hide. I usually don’t just come out of the blue and talk about having an illness, unless someone gives me a reason to do so.
You may ask me how I cope. Well, that’s the purpose of this blog. I’ll be sharing my coping skills with you. But really, writing this blog is also for me too. I truly believe many people in my shoes would have ended it by now. They don’t know how it feels to feel this way. It’s complete utter torture. I wear a mask so I do look chipper often. I am happy, but it takes effort. This blog will also help me, because when I write, I think of new and creative ways to help me cope as well.
Update as of 2017: I have not written in a while. I realized I either left some symptoms out previously, or some new ones formed. Some also morphed.
The heat intolerance is still extreme. Now, though, I am having more difficulty adjusting from cooler to warmer temperatures. So, if I sit outside in 55° weather, and I go into a 68° house, my nervous system starts to shut down. Breathing is highly labored and suffocated. I get delirous. People will ask me questions and I can’t focus when this happens. Same with going from cool to hot. This has been going on for a couple yrs but haven’t known how to describe it. Now it’s also worse.
Also, when I even step outside in the sun, I’m suffering majorly with the confusion, delirious, pain, dizziness, and a million other things.
My chest has gotten way tighter than usual. I cannot sleep on my right side because my breathing is too labored. I can’t sleep on my back or I’m suffocating. I can’t sleep on my stomach because the bottom of my spine is messed up and it hurts too bad.
The chest pain is not a sharp pain (however, I’ve had that as well). It’s not a dull, aching pain either. It’s a very hard pressure, like elephant-sitting-on-my-chest type of feeling, 24-7. It is worse upon sitting with no back to a chair. It’s also worse when I exert myself or if I lean up with no chair backing. It’s far worse when I stand up or walk as well. When I walk, I am barely able to breathe because the pressure is so extreme.
The chest pain goes from my entire chest, to my shoulders, and down to my diaphragm. It’s all tight.
About 6+ months ago I developed extreme difficulty eating. This is going to be long-winded because it’s not simple or clear-cut. So here is what happens when I eat: My trachea is tight. It has been hard to eat due to the trachea issues for 6 years. But now the trachea is tighter. Also, the food often gets caught in my throat and I cannot swallow fully. 6+ months ago, my diaphragm and chest got so tight that my stomach was tight as well and everything that went down would just sit there. I was so winded after eating jus ta few bites of food. The food would get caught or I’d throw it up. I would practically hyperventilate while swallowing and my arms would go numb right after eating. My lips would start to go numb too. The breathing was very labored, difficult, and at times I felt like I was going to die. I went to the hospital but they could not figure i tout. I thought for sure this one day I was going to die. But obviously I survived. I fainted because I wasn’t getting enough air. I woke up and was so delirious. I took an inhaler and it helped some. I was very dehydrated.
I BARELY ATE ANYTHING FOR MORE THAN 2 MONTHS. Then, miracle: I started eating again! yay. so I was back to eating some stuff, better than nothing right?? But then I came down with a stomach bug that lasted almost a month, and that made me lose weight. I lost my appetite but I got it back. Now I just finally started to gain back some of the weight I lost from barely eating for 3 months.
When I say I barely ate or drank for 3 months, let’s just say I probabyl drank 2 teaspoons of water per day , IF that. I had to go to the ER frequently SOLELY for IV drips. The hospital got so upset with me. I have not been to the ER in one month! I’m no longer in need of IV drips. They yelled at me for going but if I did not go and get an IV, I’d have died. I really was borderline going to need a feeding tube. I mean, most people can’t survive not eating for 2-3 months and barely drinking. But I lived bc I kept getting an IV. I dropped to 98 lbs from 115. Now I’m back up to about 110. Every now and then I would force food but I would end up in the hospital later that night or throwing up all night. I really think I have gastroparesis. I have all the symptoms of it. It also goes along with EDS, as the vagus nerve is affected.
My nose is very painful. The cartilage is very fragile. If I even rub my nose, it dislocates at the cartlige area.
I cannot bend forward too much. I LOVE LOVE LOVE LOVE PUTTING PUZZLES TOGETHER, but I cannot do that too much for the past few yrs because I have this new symptom as of the past 2 years. So… basically what happens is I think it’s from my neck…. I’ll be putting my head down and leaning forward, and my ENTIRE body is affected afterwards. It doesn’t even have to be long. It could be me having my neck bent weird for just one minute. Then my entire body feels “off”. I get uncoordinated, and my depth perception is highly disrupted. My depth perception is usually great, but not when I aggravate my neck. Good thing is it resolves itself with some rest after several hours. The vertigo also gets far worse. My hands will feel like they are foreign. Arms feel off. Neck gets stiff and uncoordinated. Not like an “ouch” type of pain… but like a what-the-heck-is-going-on type of feeling. No sharpness, only constant and pressure all over. Some body parts will feel numb.
Another thing that has been getting worse is the set task shifting. I’m not highly knwoledgeable about this neurological symptom, but I think to my understanding “set task shifting” is when you go from one task to another. I’ve had this weird thing for the past 2+ years which makes it hard to change tasks that involve some sort of concentration or thought.
Example #1: I type on the computer for 2 hrs. I then get up immediately and play the piano. My brain adjusts very quickly, and I’m able to play. As soon as I’m done playing, I go back to type, and my brain has no idea where each letter is located. It’s like I forget how to type. It resolves itself after about 20 minutes. Notice a trend???? My breathing resolves itself usually after 20-30 min after exertion as well. There is something really wrong here. By the way, I’m normally able to type at 117 WPM on average. After playing the piano, I can only type at about 40 WPM. It reduces.
Example #2: Sporadically forgetting how to do everyday things when new stimuli is introduced.
Aside from those, for the past 15 years I wake up in the middle of the night confused and forgetting who I am or where I am or who people are.
I used to get myoclonic jerks and hypnic jerks so bad that I would be up all night. I have not had those in a while, but I still have severe sleep seizures.
Also what has gotten worse is my hands and arms. I type a lot. I probably do have carpal tunnel. But my arms often feel uncoordinated, but usually only after doing activity in my arms. I can barely write without extreme pain either. That started back in about 2013. Prior to that I was able to write just fine. However, I can usually play the piano with very little pain. But it’s not the muscle because I still write and play and type all the time. In fact, that’s all I do!! I type all day. My fingers and wrists are VERY strong… like, the only strong part on my body!!
Update on 2/9/2018: Okay, now I am turning 35 next week. What is new since writing this with the symptoms is that I now have a pancreatic cyst or tumor. I have been eating much less now. I’m malnourished. I can hardly eat. I believe the cyst was from me sitting too long for so many years in the same chairs. My chest is more crushed than ever. Every breath feels like it’s my last. I cannot sit up without a backing to the chair. I think this is either because my lungs got so used to operating only with a backing, or because of the inflammation that occurs and straightening out of certain organs which have been morphed from sitting too long, which then cuts off blood supply and inflames the rib cage. My nasal passages are getting tighter. Ears are now fuller. My legs are much weaker now. My entire body feels flu-like and weak all the time. I spent 8 months of last year feeling “viral”, with some sort of stomach bug it felt like. I don’t know what it was, but I was chilly, cold, nauseous, with bad stomach ache almost all year. It is very hard for me to do anything these days. I can’t get up to cook or do anything at all. I can hardly care for myself. I can’t go from room to room in the house. I use a wheelchair almost full time. I can’t stoop or crouch down. I can’t go on the floor because it’s too hard to make it back up. I can’t breathe while walking or standing up almost at all… there is just no space for air. It gets crushed when standing.
People don’t really get what is going on with me. They can’t possibly understand what it feels like to have exertion intolerance, unless they have it. Your body just literally gives out on you. Then they tell you to walk or crawl, but you can’t. It’s actually more exerting on the body to crawl. I could not even crawl and breathe at the same time. You can walk for about 10 seconds but then you are maxed out for another 20-30 minutes. And then your body semi-resets itself, but only with the exertion stuff. And if you talk, your body is too exerted to go walk. Talking counts the same as walking. Just being in a car is too much now, but I can do it at times. I lose breath in the car just with the bumps shaking my lungs and chest. Everything becomes more inflamed. Ironically, though, being in the car is the only thing that will help my blood to move, since I can’t move it on my own. So it’s a catch22. You try to “force” it, but then your body gives out, and there you are in the middle of the floor. And why is that bad? Because it’s frequent hitting of the head. I have hit my head and neck so many times that my neck is beyond repair. My neck is very unstable as it is. Also, my lungs get worse. It’s something NO ONE would possibly EVER understand unless in our shoes. It’s not about forcing it. You can force it sometimes, but not others. And the more we do, the worse we get. People say it’ll get worse before it gets better. UNTRUE. Not for this PROGRESSIVE disease. I kept doing MORE AND MORE when I was able, and got worse and worse. It was a rapid decline, even with pushing it. Now i can’t do much as it is. I try my absolute best. Just me writing this is pushing myself tremendously. My hands are so pained, yet I’m typing and making it worse. It won’t get better by typing… it’ll get worse. But I do it anyway. My lungs are the same. I have been in this body and I have seen what happens and felt the after effects. I have never gotten lazy or complacent. I have pushed myself. Every time I would do anything or be around noise or light, I’d be set back for 3 weeks. This went on for years. I kept exposing myself to noise and light, but it got worse. I thought my body would condition back to it, but I was wrong.
The entire thing behind this illness is that it is involuntary deconditioning of certain muscles, of the nervous system, of the cardiovascular system, etc., regardless of how much you “push”. You are deconditioned. That’s how this all started in the first place. It didn’t happen overnight. It was gradual, but became noticeable to others when they saw me doing less and less. It’s a systemic condition, affecting the entire body. Sure, doing LESS WILL in fact make you decondition more rapidly. But I can’t help it. Bc if I were able to keep up and do more, I wouldn’t have this illness, and it would all be a moot point! I didn’t do this to my body. It was very gradual and going on when I was fully functional since the age of about 18. I was just so functional that I was able to fight through it. It progressed to being semi-functional, then mostly non-functional… to now, almost fully non-functional.
My goal is to keep trying and doing new things to see if anything helps, and to become functional again, of course. Is there a way to reverse this illness? I have been trying. I don’t know.
illnesscoping 