The problem with CFS...

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Kind of funny...the problem with CFS. Right...where do I begin?:rolleyes:'s at least one, of a thousand problems with CFS.

I have been on here since January. Several of my posts talk about a feeling of infection, feeling winded, adrenal problems, etc. I have felt since after Christmas, a bug come in and settle on my respiratory tract. It is almost the middle of March. For almost 3 months, this has been going on. As time marches on, I have become worse.

I went to my CFS specialist at Woodland's Healing Center. My doctor is a well known CFS doc who studied from Dr. Poesnecker, who believed that the adrenal gland was responsible for all illness. My doctor does not feel that way. However, he does feel that CFS can cause everything. Even if that is true...the things that it causes need to be treated! This bug, that I have seen him 3 times about, was just.....a virus, a bug, Chronic Fatigue Syndrome. A flare....ride it out! :eek:

Meanwhile, time is ticking and I am growing weaker, more tired and I have a never ending frog residing in my throat. Phlegm, spit, cough, spit...pain....spit. The grim reaper seemed to be walking around me.

After my little trip to New York, where I tried to be wicked without much success, I came home and this infection became a bear of a beast. DANGER, DANGER!! Fever, aching from head to toe, and inability to talk prompted me to go to a specialist. Ironically, I found the specialist due to a call from a physician, who wanted to buy a pair of earrings from me. I was at his hospital the week before and he wanted earrings to match the necklace he bought for his beautiful wife.

Because I was sick, I didn't even care about his wanting to purchase earrings from me. I said to him in a hardly audible tone, "I need a doctor now. I feel like I am dying. I have the flu or something like it." I explained to him that I thought I needed an Ear Nose and Throat doctor. He agreed and his secretary connected me to a great doctor.

I had to wait over an hour to get into this doctor. Meaning, I sat in the waiting room for over an hour. I was about ready to pass out, but I didn't care. He looked in my sinuses and saw...nothing. He looked at my throat and saw...nothing. He sprayed something up my nose to numb it, quickly stuck a tube in my nose and down my throat and said, "Yup, quite a red mess you got going on in there. This scope gives a lot of information." WHAT?? WHAT IS IT?

"You have tracheal bronchitis. BAD. You have it really bad." I want to get you better. But don't expect it to happen over night!

He then said, "You are too young to be on medicare. You are such an attractive young lady. I can't believe you are ill. What do you have?" I responded, "CFS and Fibromyalgia along with Interstitial Cystitis." He shook his head and said, I hate the illness Fibromyalgia. There isn't much that can be done." EEEEEKK!! Regardless, he gave me all of my medicines for free and I only had to purchase the prednisone.

Z-pack was prescribed as an antibiotic, large doses of prednisone, a steroid nose inhaler, diflucan and Nexium because he also said that I have GERD. I knew I had GERD, but he said it was coming up and hitting my trachea as well.

So, here's the problem with CFS. When you go to a CFS specialist or an internist who is up on CFS, they dismiss everything as a flare! A virus, something that can't be found. This aggravates me. This is not the first time something I have had is put on this illness. For 2 years I suffered with endometriosis pain and was told it was pelvic pain caused by Fibromyalgia. I wanted this doctor to refer me to another doctor. Instead he dropped me as a patient and said I was not accepting my diagnosis. "No, you are right, I am not." I found a good gyn, had surgery and started treatment. I then sent that CFS doc the surgical report to say "hey, here it is...and it isn't fibromyalgia," which I didn't develop until 2002 and that was 1993.

This one GYN said to me, and I agree with her, "CFS is a wastebasket diagnosis for many illnesses or when someone doesn't know what it is, it's CFS." It sounds like she is saying CFS doesn't exist, but she is not. She is asking, what is CFS? But you know, we are all wondering that. What is it? Everyone is guessing at how to treat it. Because each of us responds so differently to treatment. Some heal from having mercury fillings removed, some from changing their diet, some from doing nothing different!! It's a mixed bag. What kills one, helps another.

We are all our own doctors. The problem for me these past couple of weeks was, I was becoming so sick that I could not think straight enough to be my own doctor because I got caught up in the, "it's CFS, that's what it is." I wasn't sure where to turn once I had to stop blaming it on CFS. Clearly my doctor has no idea. He isn't recommending anyone. He doesn't say "Hey, there is a great ENT doctor to go to." He just keeps tapping his fingers, beneath his chin, as he pontificates on what to do. I want to SCREAM, as I am sitting there wanting some guidance. Not wanting to have to be the doctor, when I am so unwell. And, I was so unwell, to the point of leaving the Ear Nose and Throat doctor's office and getting lost in the parking lot, saying the F word as loudly as possible and having a mini breakdown, due to the infection and the lack of sleep. I am not saying, "Oh, poor me." I am looking back with two feelings; Laugher, as I looked scary and like an animal that had just been let out of a cage, and also fear. Fear because I was so out of it and something really bad could have happened due to my vulnerability. No one guiding me, just my gut which is for the most part right.

UGH!! The anger! At least I have energy even slightly for anger.

I feel for those that can't express, or feel any of those emotions due to being so ill and so unable, to be their own advocates. May there be a beacon of light in every fellow CFS sufferers life, a port in the storm steering them where they need to be. For as different as we may be, we are all in this together.


I have to agree wholeheartedly with your sentiments on how Dr's dismiss everything as being CFS (or FM or whatever you've been diagnosed with).

It's just so frustrating to pay out money we really can't afford on doctors who aren't up to scratch.

When you've been ill for many years, you get to know when something's really wrong (& different to the symptoms we experience every day).

I used to sometimes feel like charging the specialist a fee for doing his job for him.
The doc gave you the right stuff. I hope it all starts to make you feel better soon.

I had a fight with my former doc because he immediately called CFIDS a waste basket disease, too. And we were arguing about it. It's not a waste basket disease. We have one thing that got in and wrecked our immune system and hit every organ system in the body. However, I definitely agree that not everything should be attributed to CFIDS or Fibro. I've had docs who want to dismiss everything as Fibro and it's not. When I had my own gyn problems, I was called hysterical, told it was all in my head. All kinds of crap. Well it turned out I had adhesions, cysts, and I've got uterine fibroids. They need to get away from telling us we're crazy or that it's all just CFIDS or Fibro.

Quick funny story, my friend Kathy who has CFIDS/ME actually kicked her doctor. I can't remember if she was in the hospital or just his office, but she was laying there in pain with some organ system hurting her. He came in, gave her the same garbage about it being due to this disease or I think he also made a comment that maybe part of it was in her head. She said she was so mad and in so much pain, she just plain kicked him hard. She got away with it, too. A few minutes later, her test results came back and showed there really was a problem. And then he actually apologized to her. But I thought her kicking him was just so funny, it should have been on a comedy skit. He so deserved it. :)
Spit ( I kinda like that name, as it's what I do a lot of too - getting rid of mucous, and spiiting blood as I read some of the stories of fellow sufferers and how they've been treated),

You've had ME since 1989. Why do you still go to see docs?

There are two scenarios: (1) you have a non-bacterial infection, so antibiotics won't help; (2) you have a bacteruial infection, and need antibiotics quick. Obviously, there's also other stuff not related to CFS, like heart attacks and cancer (or maybe they are).

If you need AB's, phone your doc for a prescription, and arrange for someone to pick them up.

Otherwise, save your energy, rest up, meditate, whatever.

The problem with CFS is that medics don't understand it, are ignorant about it, are powerless to do anything about it. Until WE unlock the puzzle, this is the way it is. It's hard, but it's reality.

This is a hard comment. You'll hate me for it.

But you'll know that there's shared suffering and love out there.

Thanks again for sharing your experiences. It all adds value to the quest.
Fingers, I never hate anyone really! Hate takes a lot of energy and I don't have that. And you raise a good point. The reason I went to the docs is because my doc didn't want to give me an antibiotic, therefore he wouldn't call one in. So, I had to go to a different doc. And I am glad I did because he got to the bottom of it in less than 15 minutes. I am glad I found out I have tracheal bronchitis because my voice was nuts and all over the place and I was wondering WTF?

I am like you when it comes to docs actually. They know little anymore. But having said that, I had a friend who died last year at age 49. She had CFS. Why did she die? Because she was having problems with her heart and she refused to go to a cardiologist. While she was walking her dog, she collapsed in a field, due to that lousy heart. Because of her dealings with CFS docs, she gave up! And now she is dead and could be here.

It's sad.

And I would love to have someone pick up my meds, but I am terrible at asking for help cause everyone is always busy or I just hate asking for it due to past experiences with my own family. I would rather crawl and go to a doc than have someone "seem" like I am bothering them. That makes me SPIT.

The good news...the grim reaper is not standing directly behind me now. He is like 7 feet away though!
at least your doctors don't say that there is no such thing as cfs. even if they call it a waste basket disease , its still an existing disease to them. the first doctors i was seeing all said it doesnt exist. at least i found a very good doc eventually.
however, didnt your doctors check your blood for epstein-barr,cmv and all those nasty herpes viruses ?
Yes, my doctor who treats the CFS does. He know I have CFS. And he believes in it to the point that he looks nowhere else which is annoying. But most doctor's, like this ENT said that everyone has epstein barr. Everyone comes back with high titers at some point. I also have high HHV-6.
Hi Spitfire:
I can really "identify" with your experiences, your various illnesses and your infections! I am a huge promoter of having each one of our issues and illnesses treated by a specialist, then having a good Primary care Physician as well as our CFS/CFIDS/ME specialist. Good for you for knowing WHEN to go see another doctor. I hope you get better soon..........Blessings.Julia.........

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