Discussions By Condition: Medical Stories

Giving Up

Posted In: Medical Stories 3 Replies
  • Posted By: laboheme
  • February 9, 2010
  • 06:08 PM

I have a feeling this will be long, if you actually read through it, I commend you. I need to get it out...

I've been having issues for years. It started as pain, widespread throughout my body. Mostly my joints. I first went to the doctor about back pain when I was 18. He told me it was growing pains. What? I ended up having breast reduction surgery at 20. My back problems really didn't get better and my back often goes out. It feels like something slips inside my back and I can't straighten up. Or even move. It usually lasts a couple of days. Doctors keep saying it's muscular but I can feel something slide in my spine when it happens. I have a spot about mid-back on my spine that can't be touched. It doesn't hurt so much as make me feel like throwing up when someone touches it (including me).

I have pain in my neck, shoulders, back and knees constantly. I get sciatica constantly. It feels like a similar grinding or slipping in my knees and hip area as it does in my back. I can't wear anything on my feet other than my sneakers or my entire body gets thrown out of whack in a most painful way.

I have serious memory problems, both short and long-term. I often forget what I'm doing in the middle of doing things. I'm starting to forget common words from time to time. I have no memory of childhood. Vague memories of a couple of things in my teenage years but I think that's more from hearing the stories than real memory. Even in my younger adult years, memories are choppy and blur into one. It makes recounting what is going on, with dates, difficult.

I have several food allergies. I was diagnosed with IBS back around 2000, I think. At this point, I wake up with an upset stomach and every time I eat it upsets my stomach unless the food is very bland (chicken, rice, popcorn are all fine).

I saw a rheumatologist (sp?) who spent about 5 minutes with me, told me I had Fibromyalgia and sent me on my way with medication. I took it for a bit, didn't like how tired it made me and stopped it. I tried to explain to doctors back then, that I was tired all the time. They told me it was because I wasn't sleeping well at night.

I got to the point where I would go to work. Come home and sleep. Wake up for supper. Eat. Go back to sleep. Wake up for a bit. Go back to sleep and sleep through the night. All the while, I was tired ALL DAY.

Fast forward to 2007. At this point, I've returned to university but this tired feeling is crippling. It's beyond any description. I tell the campus doctor that it feels like I've been drugged. Like someone has slipped me a roofie. It is all I can do, to make it into a bed. When I sleep, I often have dreams that I can't wake up. I can see myself in my bed, exactly as I should be, but I cannot wake up. I'm very much aware that I'm asleep but can't wake up. I try to scream, something, anything, to get myself to wake up but I cannot. Sometimes it feels like someone is in the room. Once I could feel someone sitting on the bed beside me. I couldn't turn around. I couldn't move. I couldn't wake up. Yet I could feel a weight of someone directly beside me. A few times I hallucinated, seeing someone in the room. Seeing a cat jumping onto my face (that was weird). When I finally manage to truly wake up and move around, I am usually gasping. It is like I am literally locked in a struggle with sleep.

The campus doctor felt I had narcolepsy. She also felt the diagnoses of FMS was incorrect. For the first time ever, I admitted to her that I felt it was too. Something is wrong. I know that. But I don't really think FMS is correct. She sent me to a sleep specialist who agreed I had narcolepsy but needed to do a sleep test to confirm. I went for the sleep test and though I can fall asleep at the drop of a hat, could not sleep there. The wires, I was cold, I have a hospital phobia. It just wasn't happening. So she decided I did not have narcolepsy but that I do have restless leg syndrome and tried to give me a medication I refuse to take (and which causes me to have asthma attacks anyway). I don't have restless leg syndrome. I don't move at night. If I was kicking there, it was because of the wires. I slept all of 20 minutes and they couldn't do the second daytime sleep test because I didn't sleep at night. Needless to say, I was more than a little furious that she completely changed her diagnoses even though I have all these things going on.

I forgot to mention that I was also diagnosed with PCOS.

So now we're here. Anything I say gets written off as a symptom of FMS. I have been experiencing involuntary muscle jerks. If you've seen someone with cerebral palsy, it looks a bit like that. I used to work with disabled kids and that is the best comparison I can find. That started happening prior to me seeing the campus doctor. Prior to being given Modafinil (which is the only thing allowing me to function at all).

Sometimes my heart will start racing. I wore a Holter monitor for 24 hours and had one of those attacks while wearing it. My heart races. My face gets all red. I feel absolutely FINE other than that. Not anxious or nervous. They picked it up on the monitor but my medication is getting blamed. I tried to say that I've been experiencing this since my early 20s it's just gotten worse but no one seems to hear me.

From time to time, my vision will go blurry. There are no other "symptoms". I just suddenly can't see well and after 10 minutes or so it goes away. Sometimes I have difficulty talking. I stutter and stumble over words and feel like my tongue is too big for my mouth. It makes me feel stupid. I sound stupid.

Twice now, I have experienced what I can only assume is some random attack of narcolepsy. It starts with me feeling sick to my stomach. Then I am overwhelmed with exhaustion and must lay down. Once it was on the bathroom floor. Once, thankfully, on the couch. I then can no longer move. Or talk. I close my eyes but I'm awake and very much aware of my surroundings. If the house were on fire, I would burn. I absolutely cannot move. The second time it happened it felt like I had an electrical current running through my body. Like a buzzing electricity all over me. These episodes lasted around 15 minutes.

Very recently I've started losing my balance. I have foot drop and trip a lot anyway but this isn't tripping. This is me, walking and suddenly I'll fall over to one side. I've caught myself, with my hands, every time, thankfully. I've also started dropping things. I think I have them but they slip out of my hands. Keys. A can of pop. A jar of salsa (and that one was a bit amusing since the jar came open and sprayed salsa all over the kitchen).

I have had an EEG that came back normal. My doctor has written a referral to a neurologist. I am waiting to hear from them with an appointment. She said, though, "Every test we've run comes back normal." And it's true. They do. I agreed. I'm frustrated. I am starting to feel crazy. If the neurologist tells me nothing is wrong, I really don't know what I'll do.

I truly feel like, at this point, I give up. I don't know what I'm going to do. I'm turning 33. I don't want this to be my life. I want to be normal. I want to have energy. I don't want to feel sick or be in pain. I don't want to forget everything. I don't want to sound like I'm drunk when I try to talk. I have no idea how I'll work a normal job. I've got a teaching degree but there is no way I can handle the hours of teaching right now. I'm currently completing a Master's degree but I'm not sure what the point is anymore.

I guess I just really needed to get it all out. It's ok if no one replies, this was super long. I've probably forgotten things, which is part of the problem when I go see the doctor, I can never remember everything and then I feel like I'm bringing her a grocery list of complaints and it makes me feel like a hypochondriac. But I'm not inventing these things. I hate going to the doctor. I hate hospitals. I have a phobia of needles. I do not want these tests, I'm doing it because I know I need to. But I'm starting to feel like I'm coming across as crazy...

Thanks for reading if you've made it through all of this...

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3 Replies:

  • I have a feeling this will be long, if you actually read through it, I commend you. I need to get it out... I've been having issues for years. It started as pain, widespread throughout my body. Mostly my joints. I first went to the doctor about back pain when I was 18. He told me it was growing pains. What? I ended up having breast reduction surgery at 20. My back problems really didn't get better and my back often goes out. It feels like something slips inside my back and I can't straighten up. Or even move. It usually lasts a couple of days. Doctors keep saying it's muscular but I can feel something slide in my spine when it happens. I have a spot about mid-back on my spine that can't be touched. It doesn't hurt so much as make me feel like throwing up when someone touches it (including me). I have pain in my neck, shoulders, back and knees constantly. I get sciatica constantly. It feels like a similar grinding or slipping in my knees and hip area as it does in my back. I can't wear anything on my feet other than my sneakers or my entire body gets thrown out of whack in a most painful way. I have serious memory problems, both short and long-term. I often forget what I'm doing in the middle of doing things. I'm starting to forget common words from time to time. I have no memory of childhood. Vague memories of a couple of things in my teenage years but I think that's more from hearing the stories than real memory. Even in my younger adult years, memories are choppy and blur into one. It makes recounting what is going on, with dates, difficult. I have several food allergies. I was diagnosed with IBS back around 2000, I think. At this point, I wake up with an upset stomach and every time I eat it upsets my stomach unless the food is very bland (chicken, rice, popcorn are all fine). I saw a rheumatologist (sp?) who spent about 5 minutes with me, told me I had Fibromyalgia and sent me on my way with medication. I took it for a bit, didn't like how tired it made me and stopped it. I tried to explain to doctors back then, that I was tired all the time. They told me it was because I wasn't sleeping well at night. I got to the point where I would go to work. Come home and sleep. Wake up for supper. Eat. Go back to sleep. Wake up for a bit. Go back to sleep and sleep through the night. All the while, I was tired ALL DAY. Fast forward to 2007. At this point, I've returned to university but this tired feeling is crippling. It's beyond any description. I tell the campus doctor that it feels like I've been drugged. Like someone has slipped me a roofie. It is all I can do, to make it into a bed. When I sleep, I often have dreams that I can't wake up. I can see myself in my bed, exactly as I should be, but I cannot wake up. I'm very much aware that I'm asleep but can't wake up. I try to scream, something, anything, to get myself to wake up but I cannot. Sometimes it feels like someone is in the room. Once I could feel someone sitting on the bed beside me. I couldn't turn around. I couldn't move. I couldn't wake up. Yet I could feel a weight of someone directly beside me. A few times I hallucinated, seeing someone in the room. Seeing a cat jumping onto my face (that was weird). When I finally manage to truly wake up and move around, I am usually gasping. It is like I am literally locked in a struggle with sleep. The campus doctor felt I had narcolepsy. She also felt the diagnoses of FMS was incorrect. For the first time ever, I admitted to her that I felt it was too. Something is wrong. I know that. But I don't really think FMS is correct. She sent me to a sleep specialist who agreed I had narcolepsy but needed to do a sleep test to confirm. I went for the sleep test and though I can fall asleep at the drop of a hat, could not sleep there. The wires, I was cold, I have a hospital phobia. It just wasn't happening. So she decided I did not have narcolepsy but that I do have restless leg syndrome and tried to give me a medication I refuse to take (and which causes me to have asthma attacks anyway). I don't have restless leg syndrome. I don't move at night. If I was kicking there, it was because of the wires. I slept all of 20 minutes and they couldn't do the second daytime sleep test because I didn't sleep at night. Needless to say, I was more than a little furious that she completely changed her diagnoses even though I have all these things going on. I forgot to mention that I was also diagnosed with PCOS. So now we're here. Anything I say gets written off as a symptom of FMS. I have been experiencing involuntary muscle jerks. If you've seen someone with cerebral palsy, it looks a bit like that. I used to work with disabled kids and that is the best comparison I can find. That started happening prior to me seeing the campus doctor. Prior to being given Modafinil (which is the only thing allowing me to function at all). Sometimes my heart will start racing. I wore a Holter monitor for 24 hours and had one of those attacks while wearing it. My heart races. My face gets all red. I feel absolutely FINE other than that. Not anxious or nervous. They picked it up on the monitor but my medication is getting blamed. I tried to say that I've been experiencing this since my early 20s it's just gotten worse but no one seems to hear me. From time to time, my vision will go blurry. There are no other "symptoms". I just suddenly can't see well and after 10 minutes or so it goes away. Sometimes I have difficulty talking. I stutter and stumble over words and feel like my tongue is too big for my mouth. It makes me feel stupid. I sound stupid. Twice now, I have experienced what I can only assume is some random attack of narcolepsy. It starts with me feeling sick to my stomach. Then I am overwhelmed with exhaustion and must lay down. Once it was on the bathroom floor. Once, thankfully, on the couch. I then can no longer move. Or talk. I close my eyes but I'm awake and very much aware of my surroundings. If the house were on fire, I would burn. I absolutely cannot move. The second time it happened it felt like I had an electrical current running through my body. Like a buzzing electricity all over me. These episodes lasted around 15 minutes. Very recently I've started losing my balance. I have foot drop and trip a lot anyway but this isn't tripping. This is me, walking and suddenly I'll fall over to one side. I've caught myself, with my hands, every time, thankfully. I've also started dropping things. I think I have them but they slip out of my hands. Keys. A can of pop. A jar of salsa (and that one was a bit amusing since the jar came open and sprayed salsa all over the kitchen). I have had an EEG that came back normal. My doctor has written a referral to a neurologist. I am waiting to hear from them with an appointment. She said, though, "Every test we've run comes back normal." And it's true. They do. I agreed. I'm frustrated. I am starting to feel crazy. If the neurologist tells me nothing is wrong, I really don't know what I'll do. I truly feel like, at this point, I give up. I don't know what I'm going to do. I'm turning 33. I don't want this to be my life. I want to be normal. I want to have energy. I don't want to feel sick or be in pain. I don't want to forget everything. I don't want to sound like I'm drunk when I try to talk. I have no idea how I'll work a normal job. I've got a teaching degree but there is no way I can handle the hours of teaching right now. I'm currently completing a Master's degree but I'm not sure what the point is anymore. I guess I just really needed to get it all out. It's ok if no one replies, this was super long. I've probably forgotten things, which is part of the problem when I go see the doctor, I can never remember everything and then I feel like I'm bringing her a grocery list of complaints and it makes me feel like a hypochondriac. But I'm not inventing these things. I hate going to the doctor. I hate hospitals. I have a phobia of needles. I do not want these tests, I'm doing it because I know I need to. But I'm starting to feel like I'm coming across as crazy... Thanks for reading if you've made it through all of this... I'm so sorry you are having all these issues. I can relate to many of them and I too took a grocery list of complaints to a hematologist and then I forgot to ask him about 5 out of 7/8 of the questions!!! Don't give up. Life is very frustrating for me to right now too. I was compaining of memory loss and fatigue, poor concentration and the list goes on. I was diagnosed with a b12 deficiency. My blood serum level was 167. The range for my lab is 311 - 911. Even if the results are 500 to 550 a person will start showing signs of deficiency. I don't know how to put a link to the "B12 deficiency commonly misdiagnosed", but go there and check it out. So many people have a lot of the same issues. I would put a post (a shorter one ;)) on that thread and see what response you get. There are great, helpful people who know what they are talking about to help you. I wish you the best,Lisa
    waitinginfaith 17 Replies
    • February 10, 2010
    • 11:56 PM
    • 0
    Flag this Response
  • I have a feeling this will be long, if you actually read through it, I commend you. I need to get it out... I've been having issues for years. It started as pain, widespread throughout my body. Mostly my joints. I first went to the doctor about back pain when I was 18. He told me it was growing pains. What? I ended up having breast reduction surgery at 20. My back problems really didn't get better and my back often goes out. It feels like something slips inside my back and I can't straighten up. Or even move. It usually lasts a couple of days. Doctors keep saying it's muscular but I can feel something slide in my spine when it happens. I have a spot about mid-back on my spine that can't be touched. It doesn't hurt so much as make me feel like throwing up when someone touches it (including me). I have pain in my neck, shoulders, back and knees constantly. I get sciatica constantly. It feels like a similar grinding or slipping in my knees and hip area as it does in my back. I can't wear anything on my feet other than my sneakers or my entire body gets thrown out of whack in a most painful way. I have serious memory problems, both short and long-term. I often forget what I'm doing in the middle of doing things. I'm starting to forget common words from time to time. I have no memory of childhood. Vague memories of a couple of things in my teenage years but I think that's more from hearing the stories than real memory. Even in my younger adult years, memories are choppy and blur into one. It makes recounting what is going on, with dates, difficult. I have several food allergies. I was diagnosed with IBS back around 2000, I think. At this point, I wake up with an upset stomach and every time I eat it upsets my stomach unless the food is very bland (chicken, rice, popcorn are all fine). I saw a rheumatologist (sp?) who spent about 5 minutes with me, told me I had Fibromyalgia and sent me on my way with medication. I took it for a bit, didn't like how tired it made me and stopped it. I tried to explain to doctors back then, that I was tired all the time. They told me it was because I wasn't sleeping well at night. I got to the point where I would go to work. Come home and sleep. Wake up for supper. Eat. Go back to sleep. Wake up for a bit. Go back to sleep and sleep through the night. All the while, I was tired ALL DAY. Fast forward to 2007. At this point, I've returned to university but this tired feeling is crippling. It's beyond any description. I tell the campus doctor that it feels like I've been drugged. Like someone has slipped me a roofie. It is all I can do, to make it into a bed. When I sleep, I often have dreams that I can't wake up. I can see myself in my bed, exactly as I should be, but I cannot wake up. I'm very much aware that I'm asleep but can't wake up. I try to scream, something, anything, to get myself to wake up but I cannot. Sometimes it feels like someone is in the room. Once I could feel someone sitting on the bed beside me. I couldn't turn around. I couldn't move. I couldn't wake up. Yet I could feel a weight of someone directly beside me. A few times I hallucinated, seeing someone in the room. Seeing a cat jumping onto my face (that was weird). When I finally manage to truly wake up and move around, I am usually gasping. It is like I am literally locked in a struggle with sleep. The campus doctor felt I had narcolepsy. She also felt the diagnoses of FMS was incorrect. For the first time ever, I admitted to her that I felt it was too. Something is wrong. I know that. But I don't really think FMS is correct. She sent me to a sleep specialist who agreed I had narcolepsy but needed to do a sleep test to confirm. I went for the sleep test and though I can fall asleep at the drop of a hat, could not sleep there. The wires, I was cold, I have a hospital phobia. It just wasn't happening. So she decided I did not have narcolepsy but that I do have restless leg syndrome and tried to give me a medication I refuse to take (and which causes me to have asthma attacks anyway). I don't have restless leg syndrome. I don't move at night. If I was kicking there, it was because of the wires. I slept all of 20 minutes and they couldn't do the second daytime sleep test because I didn't sleep at night. Needless to say, I was more than a little furious that she completely changed her diagnoses even though I have all these things going on. I forgot to mention that I was also diagnosed with PCOS. So now we're here. Anything I say gets written off as a symptom of FMS. I have been experiencing involuntary muscle jerks. If you've seen someone with cerebral palsy, it looks a bit like that. I used to work with disabled kids and that is the best comparison I can find. That started happening prior to me seeing the campus doctor. Prior to being given Modafinil (which is the only thing allowing me to function at all). Sometimes my heart will start racing. I wore a Holter monitor for 24 hours and had one of those attacks while wearing it. My heart races. My face gets all red. I feel absolutely FINE other than that. Not anxious or nervous. They picked it up on the monitor but my medication is getting blamed. I tried to say that I've been experiencing this since my early 20s it's just gotten worse but no one seems to hear me. From time to time, my vision will go blurry. There are no other "symptoms". I just suddenly can't see well and after 10 minutes or so it goes away. Sometimes I have difficulty talking. I stutter and stumble over words and feel like my tongue is too big for my mouth. It makes me feel stupid. I sound stupid. Twice now, I have experienced what I can only assume is some random attack of narcolepsy. It starts with me feeling sick to my stomach. Then I am overwhelmed with exhaustion and must lay down. Once it was on the bathroom floor. Once, thankfully, on the couch. I then can no longer move. Or talk. I close my eyes but I'm awake and very much aware of my surroundings. If the house were on fire, I would burn. I absolutely cannot move. The second time it happened it felt like I had an electrical current running through my body. Like a buzzing electricity all over me. These episodes lasted around 15 minutes. Very recently I've started losing my balance. I have foot drop and trip a lot anyway but this isn't tripping. This is me, walking and suddenly I'll fall over to one side. I've caught myself, with my hands, every time, thankfully. I've also started dropping things. I think I have them but they slip out of my hands. Keys. A can of pop. A jar of salsa (and that one was a bit amusing since the jar came open and sprayed salsa all over the kitchen). I have had an EEG that came back normal. My doctor has written a referral to a neurologist. I am waiting to hear from them with an appointment. She said, though, "Every test we've run comes back normal." And it's true. They do. I agreed. I'm frustrated. I am starting to feel crazy. If the neurologist tells me nothing is wrong, I really don't know what I'll do. I truly feel like, at this point, I give up. I don't know what I'm going to do. I'm turning 33. I don't want this to be my life. I want to be normal. I want to have energy. I don't want to feel sick or be in pain. I don't want to forget everything. I don't want to sound like I'm drunk when I try to talk. I have no idea how I'll work a normal job. I've got a teaching degree but there is no way I can handle the hours of teaching right now. I'm currently completing a Master's degree but I'm not sure what the point is anymore. I guess I just really needed to get it all out. It's ok if no one replies, this was super long. I've probably forgotten things, which is part of the problem when I go see the doctor, I can never remember everything and then I feel like I'm bringing her a grocery list of complaints and it makes me feel like a hypochondriac. But I'm not inventing these things. I hate going to the doctor. I hate hospitals. I have a phobia of needles. I do not want these tests, I'm doing it because I know I need to. But I'm starting to feel like I'm coming across as crazy... Thanks for reading if you've made it through all of this... I found the link: http://forums.wrongdiagnosis.com/showthread.php?t=9948 Go to the last page and click on the button under the last post. Lisa
    waitinginfaith 17 Replies
    • February 11, 2010
    • 00:05 AM
    • 0
    Flag this Response
  • I had very similar symptoms as you. First, though, I'd like to make clear that I think you MAY have more than one thing going on. The problem with your spine sounds like you have something going on with your disk. Have you had an MRI of your spine? If not, get one. This can actually cause a lot of the widespread pain. It can also cause nerve damage, which can be reversed sometimes by relieving the pinched nerve(s). It would probably be good to pursue this.Have you had a full work up done for auto-immune diseases? There are several that can cause these problems, including the fatigue (which I'm guessing is also exacerbated by the pain originating from your back problems).It took 9 months and several doctors before I was finally diagnosed with a relatively rare form of lupus called neuro-psychiatric systemic lupus erythematosus or NPSLE (also called CNS lupus). Essentially, my immune system began attacking my brain. I suffered from both demyelination of my nerves AND it attacked the brain cells themselves. I suffered from visual disturbances, sleep disturbances (in my case mostly insomnia, but I also suffered crippling fatigue on top of it), heart arrhythmia, blood pressure problems, balance problems, seizures, tremors, hearing loss, and hallucinations. My cerebrospinal pressure measured during a spinal tap was off the charts. By the time I was diagnosed, I could barely speak, could barely read and write at a 2nd-3rd grade level (I was tested at 80% of a Master's degree level just a few years before), and later was told by my neurologist that she didn't think I would live much more than a week or two at that point. I had gone to several rheumatologists and was told nothing was wrong because my labs were either not high enough or normal (even though the results in question were positive in a different lab). It took one of the top rheumatologists in the country to finally give me a diagnosis, and start treatment. My symptoms started with sciatica and some tiredness several years before I even thought something was wrong. I also had bouts of EXTREME fatigue (I'd fall asleep while standing up or walking), chronic migraine, memory loss, confusion, personality changes, and digestive problems that were diagnosed as IBS. I also ended up going through a cardiac ablation (cauterizing nerves in your heart) for tachycardia, which was only partially successful. One of the first signs of neurological involvement was losing my reflexes in my legs, and later my arms.I'm not saying you have lupus, but everything you have posted, minus the issue with your spine, points to some kind of auto-immune activity. The joint pain and fatigue combined with the progressive neurological problems just seem to point that way IMO, though you also need to rule out other causes, such as lesions, as well.Getting diagnosed can be a long and tedious process. My best advice is to find a primary care doctor who LISTENS and CARES. That is what got me through, even when things looked really grim. I don't remember ever wanting to give up (the whole experience is kind of a blur), but that would be because my PCP was ALWAYS there, and kept telling me to keep trying; to seek out another rheumatologist, to insist on another test, etc. I had a neurologist with a fantastic bedside manner, too. She ended up being my impromptu therapist as well...I was able to get out my frustration, fear, whatever. Getting good doctors to set up a kind of base makes life so much more bearable.Good luck. Finding a diagnosis for something that isn't "typical" can be grueling. Don't give up....be your own best advocate, and if it doesn't SOUND right to you, don't buy it, and don't be afraid to tell them.
    tandarat 1 Replies
    • February 12, 2010
    • 06:45 PM
    • 0
    Flag this Response
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