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I Can't Explain My Current Symptoms Can Anyone Relate?


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I have been down for almost a month now. My longest since the beginning of this illness. Anyways I can't really explain my symptoms and fear the doctors will just think I'm going crazy. My mom asked me exactly what's bothering me. I didn't know what to say. Besides my normal nausea and headaches this is how I feel

Like my body is extremely weak

Like I'm on a new med that has me zoned out (not the case)

Like I'm completely flushed

I'm in a fog, but yet I can think

Like I'm dying

Walking up to my bedroom even seems like to much for me to handle. I have not cared for my kids in almost a month because I physically can't.

What is happening to me? Does anyone else know what I'm trying to express? I'm really scared and feel like I have brain damage or something.

What can I do? I have extra fluids, salt and I'm doing everything I can to get to my baseline.

My hr and bp's are my "normal"

Please anyone who can relate please respond. Like I said I am scared and have never felt anything like this before. I don't know how to get help since I know if I tell the doctors how I feel they will probally put me in a mental hospital. (This is not a depression issue, I'm upset but who wouldn't be.)

Dayna

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Dear Dayna,

I am sooooooo sorry you are suffering so much and are so alone in your experience at home. I wish I had answers, but I will say that you are very clear, very real, very sincere. There is nothing vague about saying you feel weak, flushed, foggy, and believe it to be serious.

There is an explanation, or likely more than one. As you find energy, write things down and organize them on paper with the thought in mind you will show your family, your doctor, etc.

Sometimes it is hard to find the right words to translate a physical sensation into what a doctor can understand. Until a doctor him/herself can relate to you because he/she actually has the experience of having hard to describe symptoms you might try to appreciate that the most well-meaning ones don't know what "weak" feels like.

Do your best. That is all you can do.

Hang in. We are here for you.

OLL

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Dayna,

I'm so sorry for how poorly you feel. You will find the answer. I know it. Sometimes it takes longer than we like.

Have you been worked up by an endocrinologist? A friend of my mother's felt poorly for years. They thought it was all in her head and that she was a hypochondriac.

It turned out she has low adrenal gland output. That can really make you feel poorly.

I know there are other disorders that can cause someone to feel poorly. Obviously, the doctors and you together have to come up with a "plan of attack" to try and find the cause. Don't give up. Keep a running list of all the medical tests you've had and the results so you can show them to different doctors.

My thoughts and prayers are with you. I know how tough this can be.

Hugs,

Futurehope

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Dayna,

Ohhh, I wish I could just make all of your symptoms go away!! I'm so sorry that you've been this sick. I think "old lady lighthead" is right, though. You are quite clear in describing your symptoms. These types of symptoms can be very difficult to trace back and describe, so you're doing a great job. B)

Here are some of the things I have done to be prepared for doctor visits:

--- Kept a health journal

--- wrote down everything I wanted to say to the doc before the visit

* Remember: The doctor is there to serve you. Try to get all you can out of the visit.

Some other ideas:

--- Bring a DINET brochure with to your doctor visit. Point out the symptoms that match your's.

--- If your doctor is not familiar with dysautonomia, you could ask him/her to call up a doctor who is (there's a list on this site) and get some tips for how to treat you.

--- Be honest with your doctor about your symptoms. You are obviously experiencing extreme health problems, and you have the right to seek adequate medical care. If your doctor does not believe you, perhaps he/she is not the best doctor to be treating this particular disorder.

I hope you start having some better days soon, Dayna. Take care!

Shannon

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I would definetly keep pursuing other Dr's and reseacrh other options.... If you do not feel you are getting what you need then be persistent and keep going for second, third, forth opinions,,,whatever it takes.....

I know its tiring and hard to do, but one ting I have learned is that the Dr's will not come to you so you have to keep putting yourself out there and researching.

Feel better and know there will be an answer, hang in there ! B)

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People find it hard to believe when I say this, as I am an English graduate and doing a master's in English but I find it almost impossible to explain my symptoms to doctors. When they ask me why that is, I tell them to imagine trying to describe how they know they are breathing or blinking- because I live with my symptoms on a daily basis, and get them every time I stand etc, it's about the same as asking a regular person then.

It frustrates me when I can't put it into wrods, but I think when you live with something day in day out, you get used to it.

I will never forget the shock when I discovered that it wans't normal to get excruciating joint pain that made it feel like I was being tortured in classes- I had just always assumed everyone got it and I must be a wuss or something. It was only when Rodney Grahame (professor of rheumatology) asked me specific questions, because he knew what he wqas looking for- that it all became apparent.

Good luck! WIsh I could help- but I'm in the same posiiton too.

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Hi Dayna,

I agree with OLL..........

I also have a hard time trying to say how I'm feeling.

Things always come out wrong or If I'm not feeling the symptoms at that moment I forget "how" they felt.

Writting the symptoms when I feel them has helped.

Good luck,

Amber

Oh, I have kids too......I feel for you.

I understand how bad you can feel when you can't take care of your children.

Just tell them you love them and give them hugs and it will be ok.

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Thanks for all your imput. I went to the symptom page on this site and found some more technical words to describe my feelings

disequalibrium

detached from surroundings

generalized weakness

cognitive imparement

fatigue

flushing

lightheadness

I just have never experienced these exspecially not all at the same time. How do you guys find relief from these symptoms? I hope this is just a pot hole and I'll be climbing out soon.

Thanks again

Dayna

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Hi,

That's excatly how I would feel if I did not have this strategy. I guess I developped it because for 30 years doctors told me I had nothing wrong so I told myself that I had nothing wrong and I eventually sort of convinced myself! Now that "doctors" know that I have something wrong I still have the ability to ignore my symptom, until I faint (Yerk).

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I wish I could ignore the symptoms too, but have tried that and it gets me into trouble.

If I get real bad then that's when it's time for a nap.

Amber

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Dayna, I know EXACTLY how you feel. My allergist was the first understanding doctor I found, he knew immediately from talking to me that my head was so stuffed that I couldn't think clearly. He's used to seeing this in allergy patients and was able to ask the right questions, so the responsibility was off of ME to explain why I came to see him. I hope you find a doctor who has this skill. Don't be discouraged by people who don't understand why you're not well, eventually you will find an answer. There are many of us here who have had the same experience.

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Hey, Dayna,

So sorry you are feeling so frightened and awful. I have had these symptoms before, with the exception of the flushing. The extreme weakness is both weird and terrifying. For me, it has always passed in a few days to a week, but it worried me lots.

I don't know if this helps or not, but I will almost always get this horrible extreme fatigue when I'm starting a new diet, or have lost several pounds quickly. I realize this probably isn't the case for you, but I thought I'd share because I explained it to my doctor and he told me that it was an overreaction to a "rev up in metabolism" and it happens to some people who diet. He told me he thought mine was more severe because I suffer from dysautonomia.

Since that conversation, whenever this happens to me, I calorie load. Sometimes it takes 24- 48 hours to go away, but often I will notice an improvement in a few hours. Do you see an endocrinologist?

I know that "feeling like you're dying". For me, just being that completely exhausted and weak makes me think that something must be terribly, terribly wrong. However, I do always recover.

Hope you get some relief soon,

Carolyn

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My line now is: "POTS is like having Heat Stroke and Stomach Flu all in the same day, and everyday".

That will stop doctors cold because they all know what those two things feel like. (most of the doctors that I know in my line of work would actually take a great amount of pride in the fact that they have had heat stroke- the other ones would pretend) The ones that don't believe me- I leave behind!

I've also heard "Hey, you look too good to be sick- are those fishnets?" to which I reply "If you thought you were going to die like I am and this were your last day on earth, wouldn't you wear fishnets too?" This goes over big with the old docs because they probably would! :)

Hang in there, Toots!

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Those symptoms sound like me when i was really bad with CFS. Most of them continued for a few years excpet thankfully i could move out of bed to the bathroom without extreme effort after the first 4months or so. I think you did a good job of explaining them :angry: Although i guess i am biased from personaly experiencing similar.

good luck! xo

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Well thank you everyone for your responses. Luckily these symptoms have somewhat leveled out the past few days. I feel like crap still but I'm not as foggy or strange feeling. I actually feel like I'm back on earth. No longer hanging out in space.

All I know is that is the scariest feelings I've ever experienced.

Hang in there everyone

dayna

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