Topic: Feeling like going to die often? Anyone else with lyme get this?!
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I have been asking around because sometimes I wonder if I'm the only one (or a very few of us) with lyme that feels like I'm going to die a lot? Sometimes daily. Sometimes I feel like it'll be my last night. It's extremely frightening and so hard to explain.
I could just be sitting there and just feel like I'm either going to lose consciousness or just die, this could go on all night.
I feel really weird, having something that feels like shortness of breath, but don't think it is. My heart feels like it's acting funny, not palps, but it just feels weird inside my chest... my stomach starts burning and then the burning rises (must be a type of acid reflux, maybe). And I just feel very faint, out of it, feeling like I'm going to lose consciousness continuously.
I'd attribute this to my low blood pressure, but there are days when I have the same numbers or even lower and feel "good" or fine compared to these bad days.
I really have no idea what is causing the "feeling like I'm going to die" feeling, but it is very scary and when I ask around, it doesn't seem like many other people with lyme experience it????
Anyone here know what I'm talking about at all?
I mean, having lyme with the muscle aches and fatigue and usual joint pain is awful, but having THAT on top of pretty much every other symptom of lyme listed in the books PLUS feeling like you're going to die on top of all that is just crazy and ridiculous and beyond terrifying.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
You are not the only one. My life is exactly the same. No idea if this is lyme or CF or co-infections. Do you also have low vitamin D? I know how you feel,you always think you are falling on the floor the next minute.
Posts: 1834 | From US | Registered: Oct 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I do have low vitamin D, but I don't think that is the cause.
I am sorry you have to deal with this too. It's so very scary.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Almost everyday. Just keep plugging along. Always surprised when I open my eyes in the a.m. or afternoon. Sorry that you feel this way DM. and karen....it isn't fun.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
yes you are not alone I have this too, it's definitely gone down with treatment. It is the most panicky, hopeless thing I've ever experienced and have only known since my exposure to these fantastic tick friends of ours.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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posted
Everyday! It is horrible to live like this, feeling these feelings of chest pressure, pain, lightheadness, like my body could just give out any moment.
I like to describe it to people like this, on my best days it feels like the worst flu you've ever had, and on the worst days it feels like I am going to die, all day long, but it seems to come most in the morning and at night.
Many times I try to just carry on because my 10 year history with Lyme et al has shown that I am not going to die, just feel like it.
You are not alone.
Posts: 103 | From California | Registered: Jan 2003
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Every Lyme patient I have spoken to has had this. I've had it for years at a time. Sometimes it would be worse at night. I would be afraid to go to sleep because I just 'knew' that I wasn't going to wake up.
It is not a panic attack, it is different. I think because Lyme screws up the neurotransmitters and attacks so many body parts, the body naturally feels that way.
Hang in there, I think it is a 'normal' feeling with Lyme. Not pleasant by any means, but a false notion generally.
A few months back during a really rough patch, I called my significant other at work and told him, "I'm dying. I think I'm going to die."
He ended up having to leave work and come home to take care of me.
I've got a high tolerance for pain and/or discomfort and I've NEVER said anything like that before. Not during childbirth, illness...never.
Lately I've been having rushes of panic where I feel like I'm going to die or jump out of my skin. This is a totally new feeling to me as well.
Hang in there. I'm sure the feeling will pass. And know that you are not alone.
Posts: 423 | From Upstate NY | Registered: May 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Yeah, I think everyone who has Lyme has had lengthy bouts of this. It always amazes me that I have survived and sometimes have reached the semblance of a normal life before I relapse again.
Right now I have a bad cold I caught at work and feel miserable. I've been off since Wednesday and hoping I can back to work Tuesday. Who knows with this DD?
This too shall pass.
Posts: 1954 | From Illinois | Registered: Aug 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I had this constantly for a long time until about 1 year into treatment it really started to let off. Now it is very very rare.
I agree, it WAS/IS terrible. However it did provide me with a great scoring system to determine if I am improving. Not feeling like I am about to die every day? BIG improvement.
posted
Yes, I have this too. I just posted something similiar in another thread. It is worse for me at night but every once and a while, I feel like that all day long. It's a horrible feeling that I don't wish upon anyone.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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posted
Agree with nenet, this is a good way to measure improvement. Instead of every hour, it's only half the day for me now.
I've told my husband before- I think I'm dying- and he thought I WANT to die. But it's different- I do not want to die- but I feel so so sick, like this is eating away at my body from the inside out, and I am amazed every day that I've made it this long.
Posts: 236 | From Washington | Registered: Jul 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
This really hits home with me, too.
Nenet has a good point - it is an excellent scoring system, if you keep track of it.
I remember so many days of being sure that I would die, but it seemed so crazy to articulate it - that mostly I kept silent about it.
I am glad there is discussion about this now, and wish there had been more when I felt this way daily.
It's a different feeling from *wanting* to die.
And it's almost purely physical - I was never a morbid person, nor am I now - but when your body is sending these horrendous signals, what else can one think?
I rarely feel that way now, too.
Of course, even one episode of feeling that way is too often.
Hang in there. It does get better.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Yes, I used to have this a lot but not anymore so it does get better. Twenty years ago I had a dr that thought I was going to die. She had hubby bring the kids and everything. I fooled her though. LOL
This was way before my lyme dx. She had no idea what was wrong with me and called it "Connie Disease". Finally just decided there really wasn't anything wrong with me even though she thought I was a goner. Makes sense, huh?
Sorry you all are going through this but keep in mind it will get better with treatment.
Connie
Posts: 495 | From KY USA | Registered: Dec 2004
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posted
Yes I had that and Bart tx made it go away. For me it is definitely Bart that brings it out. I know because after it went away with 8 months Rifampin /Zith it was gone. When I went off Bart tx it came back.
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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posted
Yes, I feel like I am going to die on a daily basis. I am so tired that I feel like I just don't have the energy to wake up, then how am I actually supposed to get up and do something? Everything seems so hard and such a struggle to get done.
I truly feel like I am just going to fall down, like I will just be to tired to get up and just lay in the floor (awake) and just die. It is like a bad nightmare where you have grand ideas of doing lots of fun things the next day and then you make it through a shower and have to ridicule yourself wondering why you thought you could go grocery shopping, or even pick up the kids.
It is horrible because "other people" think you want to die, or that you are lazy or that you don't care about yourself, your house, or your family. If I wanted to die, I wouldn't want to do all the things I want to do for myself and them.
I really hope I can get better. I have been in treatment for 1 year this month.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Yes I have this too. Only the difference is sometimes I just want to now after 18 years of this. That's when I know I'm at my worst.
But I have learned to think, I have gotten through this before and it will pass. On my functional lyme days I DONT want to die and am scared of it.
But then on the really bad days, with all those crazy weird feelings that I can't explain, I just think, enough is enough, I can't do this anymore.
I would never ever consider suicide but I have prayed for God to take me. That I feel like a burden to my family and just have no life anymore and am tired of just laying here watching everyone else live theirs.
Especially when those weird symptoms start. I feel like I'm not breathing right, my muscles in my back and under my ribs get tight and get weird spasms. I get restless legs, not just in my legs but in my stomach too.
Then the worst is the head stuff, the vibrations, the pressure, my jaw muscles get tight and feel weird, and my right eye won't focus. I feel like I did once before I had a seizure or like I'm going to faint, but it seems like I stay in that mode, like I'm going to faint, but then I don't. I jsut wonder how my body can keep going when I feel like this.
It's all so frustrating. All I can say is hang in there, take one moment at a time. I always say five minutes, if I can get through this next five minutes. Keep coming here and talking to others with this disease. That kept me gong many times and I hope it will work for you.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I know it does get better, because I have had much better days/months. I've been treating for two years. I was doing so much better, but seem to be going back downhill and I have no idea why or what to do about it. It scares me badly.
And the feeling like I am going to die thing is definitely not anxiety. I don't want to die and I pray constantly that I won't die because I feel like I have way too much to live for. I do not want to leave my husband. We just got married three years ago and he's my entire life.
I am just so sick of having to be scared that I'm not going to live much longer, especially since I've had better days and they don't seem to be coming around much at all anymore.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I've been sick now for only 3 years, I get these feelings a few times a week. I think that I could die at any moment. I hope this is not the case. I hope we will all get a miracle answer soon....Hang in there people.....
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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posted
Me too. I have had this...not so much lately but when I was first sick, I really thought I was dying.
I told my husband I knew I was going to die, and actually explained how I wanted my funeral, cremation, and scattering of ashes to be handled!!
It's a terrible feeling; completely out of control. Very scarey, but as others have said it does get better.
Posts: 79 | From Northeast US | Registered: Sep 2009
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