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Mojo37 03-12-2012 11:15 AM

Invisible illness, very sick.
Hello all,

I am a 37 yrs old 170 lbs male, no smoking or drinking and extremely athletic until I got sick. I've been sick in a bad way for approximately 3 months now. It all started when I woke up one morning with a burning type pain behind my sternum. Went to work feeling ok and then all of a sudden my pulse jumped to 160 bpm and my blood pressure to 155/90. They took me to the ER and I could watch my heart rate go from 80 to 150 and back to 80 in less than one minute. They did all necessary test and I was told that I had a low potassium and that it was probably the culprit of what I had going on and I was sent home. Three days later I developed joint pain, leg weakness, night sweats, muscle twitching, diarrhea, nausea, crazy hair loss, I started seeing tons of floaters, eye flashes that did not let me sleep at all and when I did fall asleep I would wake up minutes later gasping for air and also a terrible lower back pain that felt coming from my spine. Needles to say I was feeling very ill, lost approximately 15 pounds in two weeks and was having severe heart arrhytmias and tachycardias. Saw an intenal medicine doctor who ran all kinds of test and a cardiologist who ran EKG's, an Echo and bloodwork. All came back normal with exception of low vitamin D levels which were corrected right away with pills and I was also put on Toprol 50 to control the tachycardia and the blood pressure.

After all the testing that was done and still feeling very ill I said to myself that it had to be stress or anxiety so I had a full blown mental health evaluation done and the psychologist said that I did not have an anxiety disorder and that my problems seemed to be more physical than psycologically based on my mental condition. That gave me some stress right there because all the test kept coming back normal.

After approximately one month of suffering I started feeling well again, my chest pains, tachycardia and arrythmia went away. I was happy and had most of my energy back until I started getting all my symptoms back again.

I saw my internal medicine doctor, retina doctor, and a cardiologist and once again they did not find anything wrong with me. Once again after a couple of days of struggling and suffering my symptoms went away but only to come back more severe now.

I honestly don't know what is wrong with me and I sure feel like whatever it is, is going to kill me. I've been tested for Lyme, Lupus, autoimmune, heart disease, virus, HIV, LDH test for lymphoma, brain MRI, adrenal glands, thyroid, multiple EKG's, ER visits, etc.

My symptoms appear to get worst from 3 pm to 11 am. I don't know what else to do. My wife doesn't believe that I feel very sick because I don't look sick. My doctors look at me like "here come the crazy guy again". I feel embarassed everytime I go to the doctors because I can tell they don't believe howsick I feel. To make things worse, I am the father of two beautiful boys ages 3 and 4 and everytime I see them while feeling so sick I feel like I won't be around much longer for them. It breaks my heart and soul and if I didn't have depression or anxiety problems before I sure do now.

I have a couple more appointments coming up with my internal medicine doctor and a neurologist. I am really hoping for my doctors to find what is wrong with me because I can not live the rest of my life like this. Thanks for reading. Any help will be greatly appreciated!

ccadams 03-12-2012 12:13 PM

Re: Invisible illness, very sick.
Just wanted to respond to let you know that you are not alone. My 17 year old daughter has had the same symptoms for 5 years. She has been from doctor to doctor. When she was 13 it was Mono at 14 depression (would get better on anti-depressant, didn't work) 15, told she had lime disease only to be referred to a another to say she didn't. Was told recently by one doctor it "might be" fibromaglia, only to be told by another that "kids don't get fibromaglia!" All the symptoms you describe she has described to me. She goes short periods of time when she feels OK to only suddenly start feeling like she has the flu..body aches weird pains in chest, back joints etc. it's heartbreaking to watch her suffer. After another dissapointing doctors visit Thursday she said "I'm not going to another doctor they think I'm crazy! I told that we were not going to give up until we found someone to help her! So just keep searching for yourself and your kids!

Mojo37 03-12-2012 12:58 PM

Re: Invisible illness, very sick.
Thanks ccadams! It is terrible to feel so sick and go from doctor to doctor just for them to say that they can't find anything wrong with you, which is a good thing but at the same time something must be causing all this symptoms. I totally understand your daughter saying that she is not going to the doctors office again. It is very frustrating and debilitating. Everytime I go to see the doctors I feel embarrassed and humiliated but I have to keep doing it for my kids. I feel like the heart symptoms alone are going to kill me at any moment and I just wan't to give up but I can't. I have to keep moving forward. Like I said on my original post, if I didn't have anxiety or depression before I sure do have it now, specially after the psychologist said that my symptoms are not caused by depression or anxiety. I wish you and your daughter the best of luck and don't give up! I will post what the doctors tell me next time I see them.

BelleoftheSouth 03-12-2012 01:32 PM

Re: Invisible illness, very sick.
Have you thought about maybe seeing a Holistic Healer? You've tried everything and it hasn't worked so maybe turning around and asking a holistic healer whats going on might get you headed in the right direction.

Its so strange the doctors can't help first thought was thyroid..then fibromyalgia..they seem to go hand in were tested for Lyme and Lupus..sometimes you have to keep going until your illness is found.

A lot of doctors don't believe in Fibro so they brush it off..(and there are meds being advertised on TV for fibro..go figure)

You're not crazy so don't feel afraid to go to the doctors thinking they think you're're making them aware of something going on and they want to help..keep going and bouncing ideas off them..

Good luck on your journey and keep us posted..



*When it comes to teenagers not having fibro...fibro doesn't care about age...

Mojo37 03-12-2012 07:07 PM

Re: Invisible illness, very sick.
Thank you Belle! I haven't tried a Holistic healer just yet but if I continue feeling so sick and getting nowhere with regular doctors I will definitely try holistic medicine.

Whatever it is that I have is severely destroying my emotional health as well. I've been tested for a lot of things but no doctor can give me an answer. I go through a lot of physical as well as emotional pain everyday. My wife thinks I am crazy, my doctors think that I am crazy but then the psychologist is the only doctor that actually said that my problem is physical and not mental. Can you believe that?

All I want is to feel and stay healthy again. I went from running 6 miles every morning and been extremely athletic to barely been able to get out of bed and go to work. I can't even play with my two boys and that hurts right there and makes everything way worse emotionally. All I can do is pray for wisdom. I will keep you posted. Thanks again!

easygoingguy 03-12-2012 10:07 PM

Re: Invisible illness, very sick.
"extremely athletic"

could be a clue. Many things can cause pain behind the sternum, some related to the esophagus/stomach, if you have discomfort swallowing, digestion etc it could be Acute Pancreatitis (inflammation of the pancreas).

Or possible pneumonia in the lower lungs, from a bacterial/viral infection. This is known as Lower Lobe Pneumonia. And these are the symptoms:

severe abdominal pain below the sternum
fever and chills
dry cough
muscle aches
rapid breathing
elevated heart rate and dyspnea
shortness of breath

kinda sounds like your symptoms?

Another possible cause is abdominal muscle strain from physical injury/exertion, a common condition in athletes. Causes pain below the sternum. Then you'd also have inflammation, and maybe then that caused Lower Lobe Pneumonia. This makes sense because the sternum pain was first, the metabolic symptoms after. Just some possibilities (if you haven't ruled them out yet)

hope you feel better soon

Altari 03-13-2012 04:56 AM

Re: Invisible illness, very sick.
Like easygoingguy said, it could be anything and isn't necessarily related to your heart. It looks, from your original post, that your doctors have been looking at conditions directly related to your heart. It may be time to branch out. Have you seen a gastro and had a full work-up? How about a urologist or kidney specialist? There are several digestive or kidney disorders that cause symptoms similar to what you're experiencing.

Mojo37 03-13-2012 06:41 AM

Re: Invisible illness, very sick.

My liver, pancreas and kidneys were all checked. Whatever I have is a medical mystery or maybe something like Lyme disease. The anguish of not knowing what it is and feeling so terrible make things worse too. Thanks for the reply!

Mojo37 03-13-2012 06:57 AM

Re: Invisible illness, very sick.

I agree with what you saying. I personally don't believe my heart is the problem but there is something causing my heart to go crazy with tachycardias, arrythmias and chest pains. One thing that I don't understand is the severe muscle twitching and joint and muscle pains that move around. My neck is also extremely sore all over. Another thing are the lights I see when I am falling asleep. Those lights won't let me sleep. I also develop what I believe to be some form of sleep apnea because when I do fall asleep I wake up minutes later gasping for air and in some kind of fight or flight mode. Thank you very much for the reply!

Altari 03-13-2012 07:09 AM

Re: Invisible illness, very sick.
Did they do a full check on your gallbladder? An acquaintance of mine had a very odd collection of symptoms (vaguely similar to yours, but not entirely - racing heart, difficulty eating, trouble breathing, pain behind the sternum, muscle aches). Long story short, after years of constant checking and investigation with no answers, one intelligent doctor checked her gallbladder, removed it, and all her problems disappeared.

For myself, I've been experiencing a racing heart (100-125 BPM) and a general feeling of "being off" for about a month now. In the past 6 weeks, I've mentioned three or four times that I have symptoms of a UTI and had several tests, all negative, but the painful, burning sensation lingered. My doctor chalked it up to pregnancy but was considering sending me to a cardiologist if it didn't improve. Over the weekend, I was diagnosed with a severe kidney infection - because I'm a generally healthy person, my body was able to keep the infection in check to a point, so it never showed up conclusively on the tests. Even when it was diagnosed, I only had two typical symptoms - racing heart and back pain. The other classic symptoms - visible urine changes, high fever, signals of infection in blood work, etc - are still absent so even when the doctor got a positive result for the infection in my urine, he had a hard time believing it because not even my white cell count was elevated in the slightest.

I believe a previous poster mentioned it, but quite often a chronic, underlying infection can cause all your symptoms. Have you had anything to suggest an infection? Have any of your doctors even considered putting you on a course of broad-spectrum antibiotics just to see if it helps? I'm not a huge fan of unnecessary antibiotics, but it sounds like at your point it may be worth investigating.

Mojo37 03-13-2012 07:52 AM

Re: Invisible illness, very sick.

I had my gallbladder taken out approximately 8 years ago. I thought about some kind of infection as well but like on your case my white cell count always comes back normal and I haven't had a fever. My pains move around but the back pain is always there when I am feeling sick. All my symptoms started back in early December and then totally disappeared for about a month, came back for about a week, disappeared and now I have all the symptoms again. All my symptoms started every single time with a day of tachycardia and arrythmias. After that it gets my stomack, muscles, joints, vision, etc. All my doctors truly believe that I am crazy. The only one that beleves that my symptoms are real is the psychologist.

easygoingguy 03-13-2012 08:13 PM

Re: Invisible illness, very sick.
If Dr's are not helping, I'd try a good holistic Dr. They will test for things you might not have tested yet for. For example a chiropractic holistic wellness Dr in my area offers these tests:

Adrenal Stress Index Panel
Gastrointestinal Panel
Hormone Testing
Urinalysis (you've already done this)
Food Allergy
Indican Test
Hair Analysis (for heavy metal poisoning)
Neurological Testing (chemical imbalances)
and more...

A very good and experienced holistic Dr will have seen your symptoms before and know what tests to take. I have a great one in my area who is also an MD. This person charges a LOT more than a standard Dr visit. In fact it cost $450 initial visit. But you get 3 hours and will they truly try to find the source of your problem. hoping for your recovery soon..

Mojo37 03-30-2012 06:48 AM

Re: Invisible illness, very sick.

Had a Dr's appointment yesterday. Went there and told the doctor that I still have all my symptoms and that on "bad" days I can barely get out of bed. The doctor did another EKG and told me that there is nothing wrong with me and that my problems are created by anxiety. I said to her that most of my symptoms can be explained by anxiety but my joint pains and my swollen lymph nodes accompanied by night sweats are not products of anxiety. She looked at me and didn't know what to say, thought about it for a second and then said to me that I am catching a virus. I couldn't believe it! I left the office very depressed. I have an appointment with a neurologist on the 10th of April and if he can't help me I guess my only option after that would be a Holistic doctor or just try to snap out of it by making changes to my lifestyle which I don't think I can improve much more. I went from been an extremely athletic and active person to a zombie. I feel like I am trapped somewhere between life and death. I will post again on the 10th after visiting the neurologist.

nleer 03-30-2012 09:37 PM

Re: Invisible illness, very sick.
You may have fibromyalgia or Chronic Fatigue Syndrome. I have those same symptoms and am in such pain too.

I see an integrative specialist in Kansas City, MO. Depending on where you live there are people that know how you feel and CAN help you.

Most mainstream doctors do not know how to treat these disorders and it has been a long haul for me to seeing one doctor after another only to hear that I have the flu or it's all in my head. These are real disorders and require real treatments.

I have some websites you can go to. Most of the doctors are not covered by insurance so I have to pay out of pocket. There are some doctors that do know how to treat and it is covered. It all depends on where you are at.
Hotze Medical Clinic in Houston knows how to treat this. I would just google Hotze Clinic. They are good but expensive. I have found one at a medical center close by that treats with a similar protocol.
I wish you well. Here's to good heath!!

Mojo37 03-31-2012 06:27 PM

Re: Invisible illness, very sick.

I have symptoms of both fibro and CFS which as far as I understand are very similar syndromes and I also have the symptoms of about 150 more diseases! I do believe that fibromyalgia is one of my problems though. Excuse my ignorance but, what is an integrative specialist? I've never heard of one before. Thanks!

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