PainfullyMe
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- Sep 23, 2018
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Hi all! I'm a 21 year old female, and relatively new to this site. I've been dealing with debilitating pain and mysterious symptoms for several years now, and a whole host of chronic health issues. Doctors are still trying to figure out what's going on, and my symptoms can be quite severe. I feel like my whole life is an episode of Mystery Diagnosis, and it's really hard to deal with the uncertainty, considering that I also suffer from health anxiety. I'm currently taking time off from college due to my health, and I couldn't be more devastated, as I was planning to pursue a career in medicine (of all things, lol). It feels as though my entire life is on hold, and I'm just trapped in an abyss of pure pain. For the past year or so, I've been pretty isolated and in bed almost all day. The pain isn't even the only problem, it's the anxiety that comes with all of it. The problem with not knowing is that I'm always worried about what I could have. I’ve done extensive amounts of research, to the point where I’m very well-versed in medical terminology. Due to being quite sick as a child (meningoencephalitis), I've been terrified and suffering from PTSD. It would be amazing to find some people to talk to, who may be able to relate. I want my life back ;-;
I’ve been having cyclical symptoms, that last for weeks to months, separated by smalls periods of little to no pain. It all started with constant headaches (I have a headache disorder, but the doctors keep changing the diagnosis. At first they said chronic daily headache, then atypical migraines, then cluster headaches, and now they're thinking it might be related to my hormones). The type varies; It can be sharp, stabbing/ice-pick, shock-like, tension, or throbbing. The location can be at the back of my head, the top, forehead, side, or the entire head. Honestly, I can hardly remember what it feels like to not have one. Aside from the headaches, I'm having a whole plethora of lovely symptoms, the worst of which being photophobia, severe eye pain, deep ear pain, and shooting pains down the veins in my neck and arms/legs. I’m also having widespread pain (constant and unrelenting, it's so severe that I just want to cry. I've been told that I most likely have Fibro, but at this point it seems to be something more), muscle twitching (fasciculations), weird zaps and tingles, tinnitus, exhaustion, horrible nausea, tachycardia/head-rushes (I have been diagnosed with POTS), gastroparesis symptoms (I have IBS, Reflux, and other GI issues), extreme menstrual cramps...and the list goes on. Most of the symptoms occur around the same time, and they are constantly changing. I have also been experiencing a rather odd symptom: a patch of goosebumps on my left upper arm, almost every time I eat. It’s always in the same spot too, and honestly boggles my mind. Ever since high school, I've also been getting this strange bruise that appears on my chin (same spot every time), and then slowly dissipates within a few days. In addition, I get ‘memory flashes’ every once in a while, especially when sleep deprived. I just hope to god it’s not some type of seizure, as this is one of my worst fears (after experiencing this as a sequelae from my illness as a child). I feel as though my cognition and ability to understand complex concepts is also deteriorating, as well as my memory. The only pattern that I'm seeing is that sometimes the symptoms flare about a week before my period begins, and then persists for quite some time after it ends.
In terms of the health anxiety, it has honestly taken a turn for the worst. My anxiety is always at its peak when the symptoms are at a flare, or when new symptoms come. Otherwise, I can just push it to the back of my mind (although this is rare, because I'm hardly ever pain-free). I'm usually worried whenever I get my headaches, as meningitis always comes to mind. This past week has been horrible and I'm not sure what's going on. About a week ago, I got this horrible pain in my left leg and left arm. The pain felt almost as if I was losing circulation (or similar to when doctors put a turnoquet on before drawing blood), which was a pain I felt previously after an IV was in my arm. I was also quite nauseous. The nausea eventually disappeared, however, the pain continued. I began getting pain in my lower back, flank, shoulder blade, wrists, and various other joints/muscles. Initially I was worried that I might be having an Adrenal Crisis , but nothing came of it. Fast forward until yesterday, and those symptoms were still pretty consistent. I started worrying about a possible DVT in my leg, or a Pulmonary Embolism, but my leg was never red or swollen. Later in the day, I suddenly got a very extreme headache at the back of my head (almost like an Ice-pick headache, but I was concerned that it might be a Thunderclap). It went away a few minutes later, but then the shooting/sharp pain started in my neck vein. I also started getting pain behind my eye, but again it didn't last. Now today, all of these pains are happening on and off, along with the sharp headaches. Now I'm afraid that I might have a neck artery dissection or abdominal aortic rupture (due to abdomen and low back pain). I'm just not sure what to focus on. I've also been told that I might have a connective tissue disorder (Ehlers Danlos Syndrome), which would certainly make me more susceptible to vein problems...so now I'm very concerned that all of this pain is due to something vascular. My family history includes heart disease and several auto-immune illnesses (many of which I'm being evaluated for). Does anyone have any insight surrounding this?
Thank you so much for reading this, you're amazing ^-^
I’ve been having cyclical symptoms, that last for weeks to months, separated by smalls periods of little to no pain. It all started with constant headaches (I have a headache disorder, but the doctors keep changing the diagnosis. At first they said chronic daily headache, then atypical migraines, then cluster headaches, and now they're thinking it might be related to my hormones). The type varies; It can be sharp, stabbing/ice-pick, shock-like, tension, or throbbing. The location can be at the back of my head, the top, forehead, side, or the entire head. Honestly, I can hardly remember what it feels like to not have one. Aside from the headaches, I'm having a whole plethora of lovely symptoms, the worst of which being photophobia, severe eye pain, deep ear pain, and shooting pains down the veins in my neck and arms/legs. I’m also having widespread pain (constant and unrelenting, it's so severe that I just want to cry. I've been told that I most likely have Fibro, but at this point it seems to be something more), muscle twitching (fasciculations), weird zaps and tingles, tinnitus, exhaustion, horrible nausea, tachycardia/head-rushes (I have been diagnosed with POTS), gastroparesis symptoms (I have IBS, Reflux, and other GI issues), extreme menstrual cramps...and the list goes on. Most of the symptoms occur around the same time, and they are constantly changing. I have also been experiencing a rather odd symptom: a patch of goosebumps on my left upper arm, almost every time I eat. It’s always in the same spot too, and honestly boggles my mind. Ever since high school, I've also been getting this strange bruise that appears on my chin (same spot every time), and then slowly dissipates within a few days. In addition, I get ‘memory flashes’ every once in a while, especially when sleep deprived. I just hope to god it’s not some type of seizure, as this is one of my worst fears (after experiencing this as a sequelae from my illness as a child). I feel as though my cognition and ability to understand complex concepts is also deteriorating, as well as my memory. The only pattern that I'm seeing is that sometimes the symptoms flare about a week before my period begins, and then persists for quite some time after it ends.
In terms of the health anxiety, it has honestly taken a turn for the worst. My anxiety is always at its peak when the symptoms are at a flare, or when new symptoms come. Otherwise, I can just push it to the back of my mind (although this is rare, because I'm hardly ever pain-free). I'm usually worried whenever I get my headaches, as meningitis always comes to mind. This past week has been horrible and I'm not sure what's going on. About a week ago, I got this horrible pain in my left leg and left arm. The pain felt almost as if I was losing circulation (or similar to when doctors put a turnoquet on before drawing blood), which was a pain I felt previously after an IV was in my arm. I was also quite nauseous. The nausea eventually disappeared, however, the pain continued. I began getting pain in my lower back, flank, shoulder blade, wrists, and various other joints/muscles. Initially I was worried that I might be having an Adrenal Crisis , but nothing came of it. Fast forward until yesterday, and those symptoms were still pretty consistent. I started worrying about a possible DVT in my leg, or a Pulmonary Embolism, but my leg was never red or swollen. Later in the day, I suddenly got a very extreme headache at the back of my head (almost like an Ice-pick headache, but I was concerned that it might be a Thunderclap). It went away a few minutes later, but then the shooting/sharp pain started in my neck vein. I also started getting pain behind my eye, but again it didn't last. Now today, all of these pains are happening on and off, along with the sharp headaches. Now I'm afraid that I might have a neck artery dissection or abdominal aortic rupture (due to abdomen and low back pain). I'm just not sure what to focus on. I've also been told that I might have a connective tissue disorder (Ehlers Danlos Syndrome), which would certainly make me more susceptible to vein problems...so now I'm very concerned that all of this pain is due to something vascular. My family history includes heart disease and several auto-immune illnesses (many of which I'm being evaluated for). Does anyone have any insight surrounding this?
Thank you so much for reading this, you're amazing ^-^
