Need advice and thoughts on some symptoms I'm having

[gktnorcal]

Hi all- I should be posting on this board everyday because I am basically bed-bound and have been for a while. Sometimes, though, I feel just too sick to even turn on my laptop. I have a "CFS" doctor here in northern CA who consults with Cheney, WPI, etc., but even he often makes me feel as though what I'm going through isn't "normal" for CFS and I'm just a anomaly. He tends to make me feel as though it's my fault nothing he has done for me has "worked."

Anyway, I know CFS sufferers are very, very fatigued...I am that 95% of the time, too...but I also feel very, very sick or ill. I don't know how else to describe it. It's an all-around "yucky" feeling that involves more than fatigue. I also feel very weak and that's been my main complaint since I went from mild-moderate CFS to severe CFS in 2005. Is that how some of you feel, too??? The sick "icky" feeling often involves nausea and borderline dizzyness.

Another big question, do any of you have problems with feeling "panicky"? Like you are constantly having panic attacks or are on the very tip of having one?

I've had every test under the sun and was even hospitalized a few months ago with severe vertigo which came out of the blue and I had never experienced before. It's to the point now of saying WTF is next???

Thanks for any comments you may have...

 

[kat0465]

i don't agree, it sounds classic cfids to me! i think sometimes Dr's get frustrated with us cause they can't make us feel better most times.
i have had every symptom you mentioned and then some.i have been diagnosed since 1993, so after 23 years no wierd symptom surprises me.

several years ago, i had a bout woth vertigo and vomiting. and im talking non stop for about a month.my heart rate was all over the place, went from one er to the next. finally i told my Husband to buy me a burial plot, i knew i was gonna die and nobody would help me.they just kept sending me home.

well long story short, i ended up dropping a whopping 50lbs in about 4 months.and slowly those symptoms got better. i went into a small remission.But in 08 had major surgery and it's been all down hill from there.

when a Dr tells you her aids patients are easy to treat compared to us, you know it's bad!! And yes i have problems with anxiety and panic attacks, big time! i take Xanax for it and it helps that.i have never found anything that helps that sick, shakey, yuky, like your going to Die feeling yet

and fatigue, and PEM is just a way of life now im afraid.so welcome to the Board, you sure cound like one of us to me!

Kat

 

[soxfan]

I have been called a very complicated case by more than one doctor...don't let them think you are out of the normal for CFS because I now know my particular doctors didn't know what to do.
So they would call me complex and complicated case just to make themselves feel better. I feel sick alot...not anything I can describe but just a very unwell feeling.

I also feel like I am going to have a panic attack but I believe mine is just major adreanlin surges because I tend to overdue...all the time. Then my body will feel on alert for days on end and it is a terrible feeling.
I have stopped trying to figure out why I have had so many random and strange bizarre symptoms that no one could ever make up. I am trying to get into a well known doctor in Boston but my chances are slim. I have never been to a doctor that truly understands CFS so I haven't been treated properly on how to cope with this illness..
I have had to learn on my own by reading.
Yes..I have felt more times than I can count that I wasn't going to wake up the next morning...I have actually written letters to my son's just in case it ever happens. I would swear my heart is going to just stop beating my body is soooo tired.

Kim

 

[justy]

I agree that your symptoms sound like classic CFS/M.E to me. I have had all the symptoms you describe as well as many others. The nausea feeling is horrible and i had dizziness for a long time, but luckily dont sufer from that anymore.
I get panic attacks and have anxiety problems which is also pretty par for the course for a lot of us.

 

[Machair]

I have all these symptoms too, and the panic attacks wake me up so they are not anxiety but due to CFS. I am also prone to dizzyness and vertigo attacks. You are not alone.

 

[jimbob]

Me thinks you're going to be joining our group here, sounds pretty classic to me. I've had everything under the sun since 1984, including all the ones you mentioned. Ativan works for me when I get panicky or anxious (1mg), good luck, GO PATRIOTS!

 

[illsince1977]

Hi all- I should be posting on this board everyday because I am basically bed-bound and have been for a while. Sometimes, though, I feel just too sick to even turn on my laptop. I have a "CFS" doctor here in northern CA who consults with Cheney, WPI, etc., but even he often makes me feel as though what I'm going through isn't "normal" for CFS and I'm just a anomaly. He tends to make me feel as though it's my fault nothing he has done for me has "worked."

Anyway, I know CFS sufferers are very, very fatigued...I am that 95% of the time, too...but I also feel very, very sick or ill. I don't know how else to describe it. It's an all-around "yucky" feeling that involves more than fatigue. I also feel very weak and that's been my main complaint since I went from mild-moderate CFS to severe CFS in 2005. Is that how some of you feel, too??? The sick "icky" feeling often involves nausea and borderline dizzyness.

Another big question, do any of you have problems with feeling "panicky"? Like you are constantly having panic attacks or are on the very tip of having one?

I've had every test under the sun and was even hospitalized a few months ago with severe vertigo which came out of the blue and I had never experienced before. It's to the point now of saying WTF is next???

Thanks for any comments you may have...

I think we have the same doc! I'm as debilitated as you (haven't turned on my laptop in days). I've been seeing him since 2001, and I always get the same impression that most of his patients are much more functional than I and that I'm an anomaly - a perversely difficult anomaly at that! It doesn't say much for him that I've fluctuated from partially functional to bedridden repeatedly for years while under his care.

 

[Forbin]

The symptoms that accompany vertigo can easily be confused with panic attacks.

Out-of-the-blue vertigo was my first symptom back in the early 1980's. A severe vertigo attack can fill you with dread and you can assume that you are about to collapse, or faint, or worse. As a result, you can get a powerful adrenalin surge which will make your heart pound and make you feel even more like you are "panicked."

It is an odd "coincidence" that the concept of "Panic Attack Syndrome" gained traction in the early 1980's just at the same time that CFS cases seemed to suddenly increase. I still have several newspaper articles from the period describing the rise in cases of "Panic Attack Syndrome," along with new treatment ideas, like beta-blockers.

At any rate, what you describe sounds very familiar to me. When I was asked to describe the way I felt, I always said it was "like a bad flu without the fever or coughing." What I was describing, I'm now sure, was an endless immune response to something. "Yucky," as you put it, is a good way to describe it.

 

[gktnorcal]

thank you all so much for your replies. it's nice to have some validation on what exactly CFS is to different sufferers. i've had panic attacks since age 20 (hmmm...interesting because that is around the same time my health went haywire). If i drink coffee i can get one after another...but these are without coffee and come out of the blue and seemingly unrelated to vertigo attacks. I'm actually going through a crisis of everything right now even though I've been dealing with this hell for several years. i've lost faith in my cfs doctor...after all, cfs is his specialty and he treats me like i'm a big boil on his ass (i'm actually a very nice person and patient). i let him talk me into spending $9,000 on stem cell in-office therapy using my own stem cells. he told me it would cure me (he actually used that word) and it did the opposite. whereas before i could leave the house 2-3 times a week for the most part, it zapped me and left me totally bed-bound. he claims that i'm the only one of his patients that didn't respond in a positive way. I just don't believe that crap...that I'm the ONLY one who ruined his day. Now that i'm bedbound he hasn't even offered to come see me and I'm 10 mins. from his office. My pain is also through the roof following the stem cells and I take more pain meds than I thought could be possible. such a long story....does anyone know of therapists that do house visits? Physical, mental, all of it I'm in desperate need of.

 

[*GG*]

Not sure how long you have been suffering, but have you heard of this site: http://www.co-cure.org/good-doc.htm ,

or perhaps this one: http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5420171/k.7A8D/ACAM_Homepage.htm

 

[glenp]

Welcome gtkmorcal Have you read up on dysautonomia? Many of us with CFS have dysautonomia, "panic attack feelings" can come with it.

 

[Cloud]

Hi all- I should be posting on this board everyday because I am basically bed-bound and have been for a while. Sometimes, though, I feel just too sick to even turn on my laptop. I have a "CFS" doctor here in northern CA who consults with Cheney, WPI, etc., but even he often makes me feel as though what I'm going through isn't "normal" for CFS and I'm just a anomaly. He tends to make me feel as though it's my fault nothing he has done for me has "worked."

Anyway, I know CFS sufferers are very, very fatigued...I am that 95% of the time, too...but I also feel very, very sick or ill. I don't know how else to describe it. It's an all-around "yucky" feeling that involves more than fatigue. I also feel very weak and that's been my main complaint since I went from mild-moderate CFS to severe CFS in 2005. Is that how some of you feel, too??? The sick "icky" feeling often involves nausea and borderline dizziness.

Another big question, do any of you have problems with feeling "panicky"? Like you are constantly having panic attacks or are on the very tip of having one?

I've had every test under the sun and was even hospitalized a few months ago with severe vertigo which came out of the blue and I had never experienced before. It's to the point now of saying WTF is next???

Thanks for any comments you may have...

Greetings gktnorcal....I have had moderate to severe ME/CFS for 17 years and have never felt what I would describe as fatigue. Exhausted or even "Yucky" are extreme understatements. I feel sick and like my blood is thick as pudding and my muscles have turned to lead. My brain is like being underwater, or in a dream (nightmare actually). The one word that best describes what this disease feels like to me is "poisoned".

The dizziness is quite common too and is most likely part of the OI (orthostatic Intolerance). Vertigo is less common with us, but it's there for many. Still, I would have other things ruled out on that one (ie. ear infections, etc). Otherwise, sounds to me like your in the right place. Welcome aboard.

 

[caledonia]

Hi, I've had a lot of panic/anxiety stuff, which I now take a med for, a poisoned feeling, nausea, and some transitory dizzyness/vertigo. Also feeling weak. Laura Hillenbrand has said she has constant dizziness/vertigo.

Anyway, a lot of your symptoms sound like they could be related to your adrenals. Here's something very simple you can try, which is to drink water with sea salt dissolved in it. Just make it salty to a level that tastes good to you, say up to a teaspoon in a glass of water. If you have adrenal fatigue, your body is losing salt, so that can cause a lot of problems such as you describe.

If the salt water makes you feel better, then consider seeing a naturopath/holistic doc to get your adrenals tested and treated.

 

[InChristAlone]

Oh that sounds like normal CFS to me! I often feel like I'm more than just fatigued, like I've got a cold or something (aka. that "yucky" feeling you've described). Most of the time, I have that "yucky" feeling but that is not associated with my nausea and dizziness, that often comes at random moment or times.

As for the panicky feeling, though I have not felt like that recently, when this all first started I would panic like that. I would have to sit there and focus on breathing or I might pass out. As of late though, I'm more calm and collected when my more severe syptoms arise.

Though I don't think we'll ever "get used to" having all these awful feelings and symptoms, I think that as time goes on, you will learn to live with them and what to do when they arive.

I hope this was helpful!