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Something ELSE wrong with me? Organ problem? Not sure...help?

SteveRacer

Demon on Wheels
Messages
26
Location
Los Angeles, CA
I posted about a month ago thinking I have CFS... I have a lot of the symptoms. But I'm wondering now if it's not something more life threatening. This is what is happening lately:

My heart POUNDS at least half the day. Just like it is laboring, even if I am just lying down. In fact, it is hard to sleep because of this many nights.

Near the end of the day, though I tend to have more energy, my ears start ringing louder and louder.

Lately, after all my detox from the naturopaths, my KIDNEYS seem to be hurting.

Two days ago, I had a VERY STRONG reaction to caffeine. Just two glasses of iced tea, and I was shaking, weak, and my mind was so hyper I could barely concentrate or think.

Last night, I got violently sick just having a HALF of a glass of wine. I felt almost like I had food poisoning.

Normally I'm sensitive to caffeine or alcohol and I don't have much, but this was very little and totally threw me out of whack.

One night I was awake with my heart pounding really hard and felt weak and sick and considered going to the hospital.

So, does this sound like CFS or something else? I'm worried I might have some organ problems but I have no idea what the symptoms are.
 

LaurelW

Senior Member
Messages
643
Location
Utah
Oh boy, Steve, it sounds to me like you need to see a doctor and get stuff like that ruled out. To conclude that you have CFS, you have to make sure you don't have another illness that can cause similar symptoms, like Dr. Bateman's patient that ended up having heart disease and a reaction to one of her meds.

Good luck to you--I wish you were feeling better.:hug:
 

SOC

Senior Member
Messages
7,849
Get yourself to the doctor, boy! You've got some serious symptoms that need to be checked out.

If you go to the doctor and s/he tells you there's nothing wrong with you, or it's all in your head, then you know you have ME/CFS. [laughing hysterically]
 

SteveRacer

Demon on Wheels
Messages
26
Location
Los Angeles, CA
Get yourself to the doctor, boy! You've got some serious symptoms that need to be checked out.

If you go to the doctor and s/he tells you there's nothing wrong with you, or it's all in your head, then you know you have ME/CFS. [laughing hysterically]

Well that's the thing... the only thing I remember them doing is checking my bloodwork, and last time it was pretty normal... so they said I was just tired, or something. Lame.
 

CBS

Senior Member
Messages
1,522
Well that's the thing... the only thing I remember them doing is checking my bloodwork, and last time it was pretty normal... so they said I was just tired, or something. Lame.

Steve,

I have had all of the things you describe in your post but that doesn't mean that it's just CFS. I had a severe exacerbation of symptoms about two years ago and I went through a period where my docs were simply at a complete loss. At the time, I had also experienced dozens (hundreds?) of TIAs ("mini strokes") and had retinal damage because of the BP spikes. By luck, I was eventually ended up seeing the Chief of Cardiology at the regional medical center. He didn't know what was causing the heart issues but he did take then seriously and got me on an ace inhibitor (my BP was spiking - not stable - and not always high) and a beta-blocker (which I no longer need). My cardiologist now sees my atypical cardiac problems as being infectious/inflammatory and neurological in origin - not the typically recognized pattern for heart disease. This isn't inconsistent with ME and it needs immediate attention.

Don't let an uniformed ER doc (or cardiologist) keep you from getting the care you need. I pushed to the point where I was admitted for observation and the docs then documented the cardiovascular instability. Things still aren't perfect but they are much better than they were year ago.

Best of luck (be pushy!)

Shane
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
I wish I could post more but will have to keep this brief.

I concur with everyone about seeing a doctor--it is imperative to rule out everything else imaginable.

Nevertheless, the symptoms you describe are those many with CFS report. I cannot even have the alcohol that's in a single drop of herbal extract, because it makes me so ill. That's much less than half a glass of wine! I cannot have even half a square of chocolate due to the caffine, it makes me so ill. Heart pounding, yup, scary but after a few years you adjust (not trying to be short here, just can't type much so I have to condense it). Detox treatments can be real hard on the body. If they're affecting your kidneys, you want to discontinue them.

There were many nights in my first two years of severe CFS when I felt like I was dying. There were many times the fatigue was so extreme that breathing took a lot of effort, so much, in fact, that for hours it required my full concentration just to breathe. There were nights I had my caretaker sleep with me because I felt liek I might need to go to the ER quickly. There would be hours on end where my heart was pounding so heavily (not quickly, just real laboriously) that I couldn't even sit up.

My CFS is/was life-threatening. There were many times I'd become intolerably sensitive to all known foods so that I couldn't eat anything for several days to a week....others with severe CFS have died because of that. There were times it seemed I didn't have the strength to breathe...I've read of others that severe requiring a person to stay with them so that if they stop breathing they can be coaxed to continue. Thankfully I've always managed to fight through it. I've improved since then and haven't had either of these two problems in a while. During that time I kept thinking, "It has to be something more serious than CFS" and I continued to seek out and test for anything else it could possibly be, with negative results each time. It's only after I read other stories of people with severe CFS and recognized the same symptoms that I began to realize that's just the way severe CFS is.

But again, you want to rule out every other possibility. To this day if I discover something in my research that might explain some symptoms and hasn't yet been ruled out, I'll explore it, even though my CFS diagnosis is very firm (Canadian criteria and all, several years under my belt). Why? Because getting well is my full-time job, and if I have another condition in addition to my CFS that is treatable, it's a worthy pursuit. In other words, don't get locked into the mindset that a symptom possibly explained by CFS must be CFS, because in doing so you're shortchanging yourself of an opportunity for improved health.
 

zoe.a.m.

Senior Member
Messages
368
Location
Olympic Peninsula, Washington
Lately, after all my detox from the naturopaths, my KIDNEYS seem to be hurting.

In addition to everything else posted, I would urge you to consider whether or not you're strong enough to be detoxing. It sounds like your body is overwhelmed and many naturopaths--many--think detoxing is the answer, without fully understanding that it takes a well person to detox without it being somewhat dangerous.

I'm in total agreement though that you need to take every symptom and try to find a logical answer if one is available before chalking it up to CFS. You'll probably be wrong when you think you're right and vice-versa, and that's part of the roller coaster. Kidney pain should be checked for pyelonephritis and other things and cardiac symptoms should always be checked out (and I think those symptoms tend to be met well with good attention and not dismissed unless you get a real jackass doctor).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Many with CFS/ME cant drink ANY alcohol or have caffeine. With alcohol, just one mouthful of something alcoholic used to be enough to make me terribly ill. I couldnt drink tea or coffee either.

The alcohol intollerance of CFS/ME is so common that at least one well known CFS/ME expert wanted to put that into the diagnostic criteria for this illness when the criteria was being formed. (umm i think that was back with the canadian consensus one).

I posted about a month ago thinking I have CFS... I have a lot of the symptoms. But I'm wondering now if it's not something more life threatening.

So, does this sound like CFS or something else? I'm worried I might have some organ problems but I have no idea what the symptoms are.

Be aware that CFS/ME does affect your cells hence organs and some have been known to have organ failures with this illness. Hence new symptoms should be taken seriously and be checked out.

I dont think you are quite aware from your comments, just how serious CFS/ME can be.. it can be lifethreatening. Some have died from complications due to it, far more I think then people actually know.

Ones with CFS/ME need to be careful when it comes to detoxing as it can cause harm to those with CFS/ME due to just how sick our bodies are. From what you said.. i think you need to stop the detoxing at least for a while. (make sure you tell your naturopaths that your kidneys now hurt so they know to be more gentle with the treatments with other CFS/ME patients). too harsh detoxing can also make CFS/ME worst.

Near the end of the day, though I tend to have more energy,

that could indicate you may have something else. Many with CFS/ME are completely wiped by end of day due to the days activities and trying to make it throu the day.. I must say thou as Im a night owl, I myself feel more alive and awake starting from late evenings or night due to my body wanting to do reversed sleep cycle. Many of us do have certain times when we may feel better than at other times.

Those with coexisting depression sometimes feel worst in the mornings.
 

Frickly

Senior Member
Messages
1,049
Location
Texas
I am on my way to bed but my first thought is to stop all treatments you are on to see if your symptoms improve. You may not be tolerating whatever this naturopath is treating you with. It does not mean that what you are doing is not working but that you need to slow it way down.
 

Lisa

Senior Member
Messages
453
Location
Western Washington
Alcohol and especially caffeine intolerance are a sign of impaired liver function. This could be easily from the detoxing you are doing if you are not supporting your liver properly while doing it. It could also just be one of the directions your condition is going in.

Drink more water!

And agree with those above who have suggested stopping the detox supplements for a while to see if you improve.

Also - are you absolutely positive you have no chance at having a kidney infection right now? If not sure, you should definitely get checked out by a doctor for that asap as that sort of infection can be a very dangerous one.

Good luck Steve and I hope you get feeling better soon! Lisa :Retro smile:
 

caledonia

Senior Member
I've had heart pounding/sick feeling before. There was also a nervous/agitated feeling. I was compelled to move and pace around even though I was exhausted. It was due to an allergic reaction to an unknown substance found in ReadyCat barium stuff, for a CAT scan of your stomach, etc. That was for wierd pains and tingling sensations in my guts/kidneys. Of course they couldn't find anything, then I was sick for 6 weeks after that with the heart pounding stuff.

I've also had heart palps and anxiety reactions from overdoing detox.

That amount of caffeine and alchohol would be a huge amount for me. At one point I could get drunk from a thimble of wine, and even the tiny amount of caffeine in decaffeinated cocoa powder was enough to make me anxious and make my heart pound.

So my suggestion would be - don't do any alchohol or caffeine. Stop all detoxing efforts until you get back to a baseline. When you restart, do a teeny tiny amount, possibly skipping several days in between so your body has time to process everything.

I also suggest checking into RichVank's methylation protocol. Maybe just take the methylation panel to start, and see if you show up with the classic CFS profile. We all have methylation/liver/detox problems. You can correct this by doing the protocol.

Having more energy at night is a sign of adrenal fatigue. Has your naturopath tested for and tried to correct this?

Keep working on getting that diagnosis! Make a new post and ask who here on the board has gotten diagnosed in LA and who their doctor is.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Alcohol and especially caffeine intolerance are a sign of impaired liver function. This could be easily from the detoxing you are doing if you are not supporting your liver properly while doing it. It could also just be one of the directions your condition is going in.

Drink more water!

And agree with those above who have suggested stopping the detox supplements for a while to see if you improve.

Also - are you absolutely positive you have no chance at having a kidney infection right now? If not sure, you should definitely get checked out by a doctor for that asap as that sort of infection can be a very dangerous one.

Good luck Steve and I hope you get feeling better soon! Lisa :Retro smile:

Reading this made me think of something I posted recently:

http://www.forums.aboutmecfs.org/showthread.php?6869-Is-Kidney-Disease-Contagious