People write that they feel sick, or 'llke death" and things like that.
I have many symptoms like heart palps, dizziness, muscle/joint pain and GI stuff.
But along with that, and maybe the worst is just this all-over horrendous malaise. A horrible, horrible, 'sick' feeling. Very hard to describe. Sometimes it feels like I'm bottoming out, or like my system is going to 'shut down'. If that makes any sense.
Or like my whole body is just buzzing with sick, or like I'm full of poison. Sometimes it comes on fairly fast. It can last for a couple of days, at the worst. Feel like I'm going to collapse, the whole time.
I know it sounds dramatic, but I cannot get the idea that something is killing me out of my head when I feel this bad. I don't think an anxiety attack is WHAT this is, but it can certainly feel like it's bringing intense anxiety on. I feel like I'm in hell.
I often have the other symptoms along with this--especially pain, dizziness and severe weakness--but this very hard to describe thing--I wonder when others write "I have been so sick" or "couldn't get out of bed..." this is what they mean.
When I have it, I can't move. Really can't. It's like the worst hangover of my life plus the worst flu feelings plus having been drugged with something terrible all put together.
I wouldn't wish it on anyone, but I am hoping someone has a shared experience. it's like 'malaise x 1000'. And it scares me.
Also, if someone has any idea WHAT this is. I've had my hormones checked, etc.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Lymeorsomething
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I get this along with my fatigue. It feels as though my body will switch off. I feel it even more when I'm resting or trying to sleep.
It's very disconcerting. I suspect it's partially tied into the various endocrine problems I'm having. My pulse has been stubbornly locked into the 58-60 range.
I can definitely relate though. For me at least, this is purely lyme related I would say.
I have never experienced it to your degree I would say but I know exactly what you're talking about...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I can't tell you what causes the malaise, but I totally understand what you are talking about. This has been my #1 symptom since the beginning of my illness.
The way I've tried to describe it is this heavy feeling in my head, like right before you get a cold, and lead weights tied to my muscles so it's a major effort to move them.
There's really no good word for it in English--"malaise" doesn't really cut it.
My guess is that it's the resuult of multiple malfunctioning systems. Like a domino effect--the germ causes A, which causes B, which in turn causes C, D, E, and F. Those in turn result in G... And so on.
You're not alone!
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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Lymeorsomething
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I've been describing it like computer "safe-mode" where bodily processes seem to be running at a minimum... It may be just the body's way of conserving resources but who knows...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Your symptoms are very common. Of course you feel like you are going to die....your body understands that it is fighting for it's very life.
When I told one of my friends that I felt like I was "going to die", she told me to get real. If you haven't had Lyme, you could never understand how accurate your description of the disease is.
Do you have an LLMD? Are you on antibiotics now? It's very important you discuss these with your doctor. I needed an antidepressant and it made a huge difference to me.
The good news is that over time you do feel better. It takes time and lots of patience. You have ups and downs, go through various meds and maybe even see other doctors. But hang in there. It does get better.
-------------------- But the greatest of these is LOVE Posts: 19 | From New England | Registered: Mar 2009
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Leelee
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I, too, have occasionally thought I was dying from the inside out, if that makes any sense.
I would never choose to live this life over again. Never.
I hope you are able to find some comfort and healing.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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I do see an LLMD (Dr. H in CA). I've been seeing him for 2 months. Antibiotics made me really, really sick. We're slowing down a bit, I'm detoxing and on my 3rd week of Alinia and Artemisin.
When I started abx/treatment, I had massive anxiety attacks. I started Zoloft then. I think it helps....a little....with the anxiety.
Doesn't make me feel like I'm NOT dying, though.
Thank you all for these responses. I hope to hear more.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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TerryK
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You've described it pretty well. I've felt that way many times.
It is the body trying to stay alive. The immune system is working hard to fight the infections which create cytokines that make us feel sick.
Inflammation is also part of the picture and is also the body trying to protect itself.
Sometimes the immune system goes a little haywire and starts to attack us. I've been told that borrelia inserts itself into our DNA and can cause our immune system to attack us.
All of our body systems are under attack. We are under seige. Our body is working very hard to keep us alive.
Keep treating your infections. Detox, that will help keep the inflammation under control and can go a long way to improve your symptoms. It helped me a lot, especially with the flu feeling.
I really feel for you and everyone that feels this way. My brother, sister, mother and myself have felt this way for a very long time. With treatment, I feel better.
You may need something for depression, pain etc. to help you until you can get the infections under control. Hang in there. You will get better.
Michael, You posted while I was posting. Abx made me very sick too and I never thought I would be able to tolerate them. You are in good hands with Dr. H. He will be able to help you.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Yes, I feel just the same. When I got in trouble for missing so much work, I tried it explain that if someone said my house was on fire, I still would not be able to get up. If I was told, get your A** in here right now, I couldn't do it, I would just have to say, I am sorry.
Not only is my body just exhausted, but really my brain has lost all will to try to trick myself into getting up and going. Because the days I do get up and do something, that is what happens....I bribe or trick myself.
Come on, if you get up and do this, you can take a nap. If you don't do take your daughter to school, she will fail, not only are you letting yourself down, but you are letting your family down...then I end up in bed later, completely exhausted and guilty for letting everyone down.
Yes, we know how you feel. I am sorry the antiboitics made you ill. My husband just had to stop taking his. He was having a really bad allergic reaction.
Good luck to you Micheal.....
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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TerryK
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Not sure if someone else mentioned this but malaise is also a common symptom of depression so that is something to keep an eye on so that it doesn't get out of control.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thanks Terry. I know what you're saying, but this 'malaise', it's different than that. It's just the feeling of being incredibly ill--not just the vague 'something wrong' feeling (definition of malaise).
It's a more violent feeling, the feeling of being very, very ill. Like the life is draining out of you.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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quote:Originally posted by Michael_Venice: It's a more violent feeling, the feeling of being very, very ill. Like the life is draining out of you.
Michael, I can totally relate. I've felt like this almost every day for 3 years. It's unbelievbly depressing to constantly be too exhausted to do anything besides watch TV and go online (when I have the energy).
I just keep hoping that one day this will all be over and I will have a life again. Thinking of a better future is the only thing that keeps me going.
Maybe you're herxing from your recent abx changes? Also, 2 months into treatment is still very early to start feeling better, especially with co-infections. West coast babesia is especially brutal...in fact, I'd bet that your babesia is a major culprit of your severe malaise. Did you try Mepron yet?
Posts: 408 | From California | Registered: Apr 2008
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Lymeorsomething
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I believe that what Michael is talking about is not related to depression at all but to infection. I know that chronic infection can certainly lead to depression but I don't think that is the case here.
As someone who continues to work and exercise and keep routines, I know that this particular symptom is a physical manifestation and not an imagined one.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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heiwalove
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i absolutely understand what you're talking about. it's a violent feeling, definitely, one of being poisoned from the inside out. i felt that way at my sickest for about 9 or 10 months straight. it was an unrelenting, active sensation of cell death. i truly felt like i was dying 24/7; the little sleep i managed to grasp was my only respite.
heiwalove
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posted
just want to reiterate the point that this symptom is NOT a manifestation of depression. it is a very physical, very literal sensation of extreme illness.
TerryK
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posted
Michael, after a few months on IM ceftriaxone I developed a severe depression and malaise. When I first got sick many years ago I developed a serious depression but I did not experience the level of malaise that I had on IM ceftriaxone.
There can be a number of causes for depression but I believe that in most cases it is a biological illness. I believe that brain chemistry (neurotransmitters) can be affected by our infections and by toxins.
lymeorsomething wrote: As someone who continues to work and exercise and keep routines, I know that this particular symptom is a physical manifestation and not an imagined one.
Whether the changes in brain chemistry are caused by infection or an emotional trauma or something else, a person who is depressed actually feels fatigue and other symptoms just like anyone else who has those symptoms for any reason. They are not imagined and feel VERY physical because they are physical. Neurotransmitters can affect MANY things in the body, even pain.
I don't think anyone on this board can tell you one way or the other if the malaise you are experiencing is related to depression or not. This is something that your LLMD should be able to help you with.
I'm not saying that your malaise is caused by depression but depression is something to watch out for in anyone with an illness. I know from personal experience that it can sneak up on you. Depression can rarely be stopped with will power and certainly not serious depression.
If you have some of the other symptoms that go along with depression, like fatigue and malaise, then please keep depression in your mind as a possibility. You can get treatment for it that can really help. The treatment generally works on your brain chemistry.
I hope you feel better soon. Please talk to your LLMD about this and get their advice.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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http://www.malaria.org/malariaglossary.html subjective feeling of being sick, ill, or not healthy. The feeling is generalized, varying from mild to severe in intensity. It may be the lone clinical manifestation of malaria, or may accompany other signs and symptoms, such as fever, headache, or nausea. ...
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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Just wanted to come back and clarify something. I personally don't think that your malaise is all caused by depression.
I initially wanted to mention depression because it is associated with malaise and is often seen with malaise. I thought depression might be a contributing factor. It was on my mind too because I went through this with IM ceftriaxone recently. Depression coupled with malaise that is.
Like so many others, when I first got sick and none of the standard tests led to a diagnosis, depression was the first thing that was diagnosed. It made me feel like they were saying my illness was all in my head and not a real illness.
In my experience, depression is just another manifestation of my physical illness. The root cause of my illness is infection, not depression. I just wanted to be sure that if depression is part of the picture, it be given consideration because I know from personal experience that it can get out of hand fast.
I hope I'm not sticking my foot in my mouth further and that I've been able to explain my concern with depression as possibly part of the picture.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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LisaS
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I totally understand what your saying Michael. It's impossible to explain to other people. My family or my Drs will say, "What hurts" or "where is the pain?" Well it's not exactly the pain, it's the I can't move but can't explain why thing...
What is that? I will be fine doing something, and then bam, I have to lay down. I spend most of my life in bed nowadays because of just not being able to move. I have also described it as the worst hangover plus flu you've ever had in your life. It's like having every symptom of every disease or sickness to some degree. But not beig able to explain it.
Plus a headache isn't just a normal headache, it's not even necesarily pain, it's a tight band around my head, tiredness doesn't mean I want to sleep, it means I have no energy in my cells to even let me move any part of my body, or stomach problems don't mean, I have a normal stomach ache, it means I have a numb but spasming thing happening under my ribs! How can we explain this stuff to anyone without sounding nuts?
sutherngrl
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posted
MV, this description fits me to a tee!
I have told my husband on several occassions that I thought I might die. But its not depression. It is truly a feeling of extreme "illness". I feel like a person that is on their death bed.
It does get better with treatment. You start to have more good days and less bad ones.
My LLMD says that people with LD feel as bad as people with late stage aids.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Leelee
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quote:
Like so many others, when I first got sick and none of the standard tests led to a diagnosis, depression was the first thing that was diagnosed. It made me feel like they were saying my illness was all in my head and not a real illness.
In my experience, depression is just another manifestation of my physical illness. The root cause of my illness is infection, not depression. I just wanted to be sure that if depression is part of the picture, it be given consideration because I know from personal experience that it can get out of hand fast.
I agree completely. For years I kept thinking something was causing my depression. It "felt" physical and organic.
They gave me all sorts of scary drugs including Lithium. Serquel came later as did some other drug primarily used to lower blood pressure, even though mine always runs low anyway. They said it would help with my anxiety.
I begged for electric shock therapy thinking (erroneously, probably) that it would shock the depression out of my body. Of course, they declined.
So, now here I am with Lyme and Barts all along.
On anti-depressant Lexapro now. Plus weekly therapy.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Well, I believe that we do get depressed after time, but it is because we are beat down by this disease.
However, I know that I have had the fatigue for what seems forever. I have been given every antidepressant known to man, plus stimulants, and they don't "fix" the problem.
I think if someone could help me "fix" the fatigue, and I could do the things I want to do, that would help immensely with my depression!!!
I was also told that depression is not my "main" problem because there is sooo much stuff I want to do. People who want to lay on the couch all day long and have no desire to do anything are depressed.
I think alot of lymies are like me, they would love to get better and work and exercise and do things we can't do now....
I hope you each have something nice happen to you today!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
I think Michael and all of replies have described the feeling so well that I am going to print out this thread and use some of your words when I can't explain the awful feeling. I too, have felt like I was dying, complete shutdown of brain and body. I take Zoloft to help me cope with the not so great quality of my life these days. Lyme is depressing!
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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Lymeorsomething
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posted
Depression is a real concern, and I think many lyme patients are depressed. However, many doctors simply dismiss lyme as depression which is dangerous. Depression, though a very real problem, can be a comfortable label at times.
In my case, I have experienced something very much like Michael's symptom in the context of a regular lifestyle. In other words, there is no mental component to my illness. I could be the symbol of positive thinking at this point yet I still get punishing fatigue and the safe-mode thing. For me, this symptom is hell and gone from depression.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I wanted to say, I am struggling with depression now. No question. But what I described at the top....I've had it to some degree since this all began. And depression was definitely not an issue for quite a while into this.
The depression just aggravates or makes the despair of feeling so ill, so endlessly....worse.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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We all do. We all want to be able to say, SURE I will come over tomorrow, without thinking, OH God will I feel like coming over tomorrow??
If I could get lyme under control, I think I wouldn't even have depression issues.
Michael, there are several medications to try for depression. Try to research them. I have heard good things about Wellbutrin, Zoloft, Pamelor, and Lexapro.
Please let us know how you are doing....
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Lymeorsomething
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I can't tell you how many times I've wanted to quit my job because of this stuff, but I knew deep down I'd be worse off without it.
I have no other life lines. It's a constant battle and I can fully understand why anyone who goes through this gets depressed.
It's brutal. I guess that I've been fortunate enough to have fatigue as a main issue and not pain.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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quote:Originally posted by LisaS: I have also described it as the worst hangover plus flu you've ever had in your life....tiredness doesn't mean I want to sleep, it means I have no energy in my cells to even let me move any part of my body
So true for me too!
Lisa, your description of the fatigue is dead-on. Thanks! I'm going to start describing my symptoms as "no energy in my body to move or think" instead of just using the generic "fatigue"...which healthy people just assume to be how they feel when they don't get enough sleep.
Posts: 408 | From California | Registered: Apr 2008
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posted
I'm so glad for everyone who responded. Though, I'm sorry to hear others have the same thing. It comforts me and disturbs me at the same time.
For those who suggested it, I am taking anti-depressants, after resisting for a long time. Truthfully, most of the time (mostly long before diagnosis) anti-depressants were pushed on me, I was not having depression issues. And really think I was just being given the typical bum's rush because the doctors I'd seen didn't know what was wrong.
I'm not sure if they're hugely effective, though. I think the truth is that there just isn't a pill that can make this okay. Sometimes, I hate being awake. Awake, too often, means illl and in pain.
I also worked as long as I could. The last 4 months I worked were a nightmare. I finally had to stop. And I was a workhorse. Unfortunately, I spent a year going to doctors, getting sicker, and only got diagnosed fairly recently.
Brutal for sure. And 'fatigue', 'malaise'....these words really don't begin to explain it. I think that's why I asked this question in the first place.
I get so ill, and I read ....and I always wonder if, when people use these terms (and others), if they feel as godawful as I do.
Thanks again.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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quote:Originally posted by Michael_Venice: And 'fatigue', 'malaise'....these words really don't begin to explain it. I think that's why I asked this question in the first place.
I get so ill, and I read ....and I always wonder if, when people use these terms (and others), if they feel as godawful as I do.
A LOT of us do feel as horrible as you describe most of the time.
The great thing about this site is that almost everyone here can relate, even if they are better now.
As I said before, I think those of us with Babesia tend to have the worst bone-crushing fatigue and constant flu-like feelings. Babesia also causes depression.
Michael, I do hope you are feeling better this weekend.
Posts: 408 | From California | Registered: Apr 2008
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posted
I can also totally relate to these feelings. Many times I went to bed thinking I will die overnight because I felt so sick but couldn't explain it.
I too have the fatigue where you can't move..it just sometimes immobilizes me and all I can do is lay there.
If even 25 percent of the fatigue which doesn't even begin to explain what it feels like would go away I could cope much better.
Being so sick for a long time will take its toll on your mind and spirit. I know for me I am beginning to feel like I am losing myself too.
So yes I honestly know what you are talking about.
Posts: 343 | From North Carolina | Registered: Oct 2008
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LisaS
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posted
I love this post Michael, I printed it out also so that when I can't explain to my family why I can't get out of bed, I just hand this to them and say here...
When you said you had your hormones tested etc. what exactly did you have done?
I felt similarly to what you describe and adding Isocort for low cortisol levels (tested by my Naturopath with a saliva test), D-ribose and Ginseng have made this type of feeling you describe go mostly away for me.
I hesitate to write about it here because I am still tweaking the amounts and I am not "there" yet, but much better!
Posts: 74 | From Maryland | Registered: Dec 2008
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posted
I don't think a day has gone by over the last 3 years (when my symptoms hit like a brick wall) that I didn't think something was killing me. It was just one year ago that I learned it was Lyme and company.
Everyday is a health struggle. Every day I still wonder if it will be my demise. I can feel the stuff in my brain, sounds weird, but it's true. I am so sick and tired of being sick and tired. Yes, I can relate. TS
Posts: 566 | From West Coast | Registered: May 2008
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disturbedme
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posted
Michael - YES. EXACTLY. I know this feeling VERY well unfortunately. Just feeling all-over flu-like, malaise, like I was poisoned, etc. Many times I just describe it as being completely 'out of it' and feeling 'off'. And yes, feeling like I could pass out or lose consciousness at any moment... so dizzy, woozy, and just plain 'sick' feeling.
-------------------- 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 trying to think of ways to explain this feeling. It has been with me at least 10 years but has been increasingly worse.
I also have described it like poison; I can feel it flowing through my veins, attacking every part of me and destroying my body from the inside out. It leaves me writhing in pain and exhausted- so sick/ fatigue/ malaise just doesn't do it justice.
It is a violent and severe feeling that makes me feel under attack, and while occassionally it lightens up a little, it surprises me with the awful power every time it begins raging again. This is my worst symptom.
Posts: 236 | From Washington | Registered: Jul 2008
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I had cortisol, adrenals, insulin, thyroid, parathyroid, testosterone, HGH, IGF. All were okay. Had a result or two that were slightly out of range, but then fine on the next tests.
I wonder sometimes if I'm having some kind of periodic crash of SOMETHING, but I have had blood tests done when I felt pretty bad, so I assume that's got it covered.
Otherwise, I'm very grateful for everyone that responded to this. I don't feel quite as alone, and I understand more what this can feel like.
And....I hate it.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
yes, i know this feeling well... i feel like the walking dead, that is when i do walk... but even then i have to think that the dead dont feel, so this is worse.
-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see... Posts: 97 | From nor cal | Registered: Oct 2006
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seekhelp
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posted
Michael,
I completely understand what you're saying. It's so scary. I can feel the episode starting and all of a sudden it's like someone injected posion into my bloodstream. Then, I can barely walk, breathing becomes harder, legs get like lead, lightheaded, etc. Enough episodes like this, especially when they happen often, leads to depression.
Lack of predictability is what really gets me down. It's hard to deal with mentally.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Yes, that's another aspect. The whole nature of this illness makes it very hard to make any sort of plan. I admit to having significant worry when I have appointments I have to go to.
I've had the bottom drop out in this way a couple of times when I was out and felt okay. It scared the hell out of me.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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