Hi, dear one. I'm glad you found this group. It is important to get a diagnosis, even though it's pretty much a pain in the butt to find a doctor who can diagnose you. I went to Johns Hopkins Hospital in Baltimore, MD. You have to go somewhere where they know a lot about fatigue-based illnesses. Your symptoms do sound like ME/CFS and it sounds like you have ruled out some other things. I totally get why you are frustrated. The medical system usually pegs us as "lazy or crazy." You have to really keep fighting to get adequate care. Keep posting here whenever you want. Friend some people and read their journals. It will help you to know you are not alone. Many blessings.

I also recommend continuing to work on getting a diagnosis. Yes, it's a pain in the butt, but taking away the uncertainty is better than continuing to worry about it and have nothing to point to when people ask what you have. Mind you, this disease is still poorly understood and some people will still just think and say negative and unhelpful things but you will be able to hold onto the truth, as we all have had to do at times when faced with people's disbelief or judgement. The good news is that there is currently a lot of very promising research going on and a very high probability of a definitive test and some understanding of what causes it in the next few years. I am hopeful that this will in turn lead to effective treatments.

Hello! Welcome!

I understand that getting all the tests is time consuming and annoying. I would say that most of us had from six to 10 months of testing before a doctor called the illness CFS. EVERYTHING ELSE MUST BE RULED OUT FIRST! That Includes cardiac problems, thyroid dysfunction, cancers, hiv, hepatitis, actual clinical depression... and, unfortumately other fatigued based illnesses such as Lupus, Sjogrens disease and others.

The idea that there is not much that can be done to help you get along nicely in life with CFS, is false! Most of us have had this illness for five, ten, fifteen years or more and are still dealing with it, but have learned to pace our daily lives, so that we can function. It's actually largely up to us to set boundaries and do research, join a support group, and learn how to get along.

If your doctor is dragging his feet, it may be because he isn't familiar with how CFS behaves and doesn't recognize it in you. Natureopath, D.O., or rheumatologist might be a good place to start. I was diagnosed in New York after about 10 months of testing! I have come a long way in acceptance in the last nine years.

We are here for you. We know how difficult it is to get used to the endless weariness, and being misunderstood by loved ones.

Hang in there! OK? OK! Blessings!

You came to the right place else. As was suggested, friend some of us, read our journals, ask quesrions.....but first you need a solid diagnosis. For as long as that takes, you need to hold on because you may something other than CFS. You my have something that is treatable. I pray that is the case.

Welcome to our group. We are here to help support you through this long diagnosis process and beyond even if you do not get a CFS diagnosis. It is the day to day symptoms that we can help you manage with our life experience knowledge. I agree with Darla that a Natureopath, D.O., or rheumatologist might be your best bet for getting a diagnosis. I was diagnosed by a rheumatologist and am managed by a nurse practitioner in an alternative medicine clinic. Pacing is the crucial. Any time someone gets ill, be it CFS, MS, cancer, or anything else, our lives are changed. We have to find the "new normal". Be prepared for grief symptoms because you have lost the person you used to be. That doesn't mean the new you can't feel joy, happiness and success. It is just going to be different. Do you have people in your life to go with you to appointments. A second pair of ears is always helpful as you learn to navigate the world of medicine. You are going to be learning so much. Keep trying to find answers. Be confident that you know your body and how it has changed. If they try to hint that it is all in your head, let them know that you are not making this stuff up. There are theories that say ME/CFS may be an inflammation of the brain, so in a sense it may be in your head and it is real. We are all rooting for you and here to help. Keep coming back and keeping asking all those questions to us and to your health care professionals.

Welcome Mega54 to this site. I was diagnosed some 16 years ago with this illness and not given
much information by the naturopath at the time. He advised me to eat a raw food diet which was
not possible for me because my digestive system was so shut down I couldn't process the foods.
I took many supplements including powdered vitamin C. Again, very hard on the old stomach. Fortunately, some five years later, I found yet another alternative doctor who was able
to put most of the pieces together and explain more what was going on. We all have our stories.
To me, it's a journey with many bends in the road and some hills are higher than others.
Yet, without the care of my recent doctor and some support practitioners along the way, such as chiropractic, acupunture at times, personal counseling, spiritual practice, a few support groups, and friends on and off line, I would not have arrived at the good times and good days which I have experienced. I would not have gained some of the tools which I use to cope with what goes on.
I know the frustations you speak of about the medical community. I agree with Darla C that your doctor may not know well what is going on. That means to look toward other sources.
I like to mention the book, " From Fatigued to Fantastic" by Jacob Teitelbaum which I got off of Amazon. Some people are not fond of it because they feel he is trying to sell people a lot of expensive supplements. For me however, I appreciated the information. As a result of reading it , I had my adrenals tested and was able to make progress in that area. I can't say as I
soared into 'fantastic' but again, there were many things I learned that I had no idea about.
I too encourage you to 'hang in there'. Move at a speed which is comfortable for you.
And welcome.

Thanks all. I see my Primary doctor early next month and am feeling hopeful. Do any of you have days when you feel like you are not really all the way awake, not just tired? I feel like I could slip back into the dream I was having with almost no effort. I am doing normal stuff, but feeling disconnected. Usually I know that it would be pointless to try to nap because I would get frustrated trying to go to sleep. Today I feel like I could lay my head down and not care that I was not drifting off, I would just stay still and let my head drift, I think.

Yeah, my daughter says I stare off into space a lot. I'm not sure I'm totally asleep, but I just zone out. I'm like you, though. I don't usually try to sleep. I lie down just to let my body rest, but I don't have any ideas that I am going to actually sleep. But, yeah, if I do get tired enough to sleep, I could just konk out wherever I am. I hope you get answers. Keep trying.

Hi Mega54. I would agree with DarlaC that you should remain vigilant about ruling out other possible causes for your symptoms. There are many medical conditions that can mimic CFS and it is important to rule these out as you may be suffering from something that is more treatable than CFS. There are a multitude of questions I’m tempted to ask you to try and figure this out but you are best advised to work with your doctors (as frustrating as this might be!) to sort through possible reasons for your symptoms. I gather your fainting spells were significant if you were put on a cardiac loop monitor. Hence, it is important to have a full cardiovascular (CV) checkout to rule out a CV condition. You also mentioned you feel sleep deprived. I would not underestimate the importance of sleep and the possibility that sleep deprivation and a sleep disorder underlie your symptomatology. Excessive daytime sleepiness resulting in cognitive dysfunction and even fainting can be symptoms of, for example narcolepsy or sleep apnea. If fainting is a prevalent symptom than a full neurologic workup may be in order. You mentioned you were anemic at one point. I presume this was effectively dealt with and determined not to be the underlying cause of your symptoms. Was any cause for this illuminated? Something as straight forward as Vit B12 deficiency could underlie this and some/all your other symptoms, though I’m guessing this has already been ruled out (?). I could go on and on about other possibilities but it would be inappropriate to do so without knowing your full medical history. There are multiple sites you can go to see a list of conditions that mimic CFS (e.g., http://www.rightdiagnosis.com/c/chronic_fatigue_syndrome/misdiag.htm). When all is said and done, you may in fact be suffering from ME/CFS/SEID or maybe even fibromyalgia. If so, then the folks on this site are a tremendous resource to help you manage your condition. I pray that this is not the case and wish you the best in getting to the right diagnosis.

Hi Mega54,
I totally understand your frustration of trying everything to get a diagnosis. I am 23, and have been to several doctors for the past 3 years, trying to find out what was causing all of my horrible symptoms. I have had a ton of tests/blood work done for all of the diseases that mimic CFS. It started out with me fainting frequently, I was hospitalized for a week. I had fainted in my younger years for no known cause and that lead the doctors to thinking it was a problem with my heart. During my hospital stay, I had an e.p. study done on my heart, and a loop recorder implanted. Everything came back normal. The doctors did however notice that I had orthostatic hypotension , an abnormal e.k.g ,and very low blood pressure. I was put on Midodrine for several months after leaving the hospital, and referred to a Cardiologist to keep an eye on the low blood pressure and what may be causing it. Months after , the cardiologist told me I don't need to come back to see her, and there is nothing wrong with my heart. She claimed I may have depression. That really upset me because I knew I wasn't depressed, I was just very annoyed with everything that was happening to my body. Shortly after , I started noticing more and more fatigue that would not go away. Exhaustion from doing nothing but day to day activities. Eventually I was in bed for months, feeling severe nausea, and severe flu symptoms. They lasted for what seemed like forever!!! I had no idea what was happening to me. I swore I had cancer and was dying. That's exactly what it felt like /feels like. . . especially when youre energetic, happy,upbeat and feeling great ,then one day you feel like you came down with a flu that never goes away. I'd rather gave the actual flu than this because at least I know it will ease up and go away soon, and I'll be feeling normal in no time. I continued going to different doctors trying to find out the cause... All I got in response was, you're depressed, youre depressed!!!! I became so fed up with all of these doctors, which are supposed to help people and make them feel better, telling me I'm depressed without even knowing me ,or caring about what I am going through. I decided to go to a physcologist ,to get an evaluation. All of those careless doctors had me thinking maybe I am mentally ill. After three visits to the physcologist, she discharged me telling me there is no reason at all for me to be seeing her. I am mentally fine. After that, I continued going from doctor to doctor, have had several shrug and tell me they don't have a clue as to what's causing my symptoms, interrupt me while explaining my situation, etc....I went to an Endocrinologist to see if he was able to find a diagnosis. All he found was that my corisol levels were very high for a long time after several different tests. While getting another blood test one doctor ordered for me, I was talking to the lab worker drawing my blood and she started telling me about a great doctor whom she recommended I go see. She said it sounds like a thyroid issue and I agreed. I set an appointment with the doctor she had recommended, and I kid you not, within a month, I had my diagnosis of CFS. This doctor began running test after test to rule out everything possible ... I was in the office every week getting blood work and tests done... The first couple tests came back normal, then after that , is when the doctor started seeing abnormalities in the test results. The first thing he saw , that made him really dig deeper into what's causing this, was that my CBGs were extremely high. (Cortisol Binding Globulins) like I said earlier, I had a past of high cortisol levels. But CBGs are different than just regular cortisol. He ordered several other tests and called me telling me I have CFS. I was shocked yet relieved. Now, I am at peace knowing what it is, rather than stressing and worrying that I'm dying of something.. Although CFS can make you feel like that at times, I try to rest on the fact that I am not, its just how the illness is. For me, the illness is up and down. Some days are great (I say great comparing to my worst days, nothing great like I felt before I came down with CFS) I am able to workout, go without a nap, have minimal pain and symptoms. Other days are terrible, as today is,, I can't get out of bed, I am extremely exhausted after a full night sleep, light headed, severe pounding headache ,joint pain , nausea and feel like I have the flu. When yesterday I was fine. Not only do I have to suffer with CFS, but on top of that I have other medical issues/difficulties.I'm only 23 and I feel like I'm 80.and I'm not saying that to be funny, I'm saying it because its true, I'm always in severe pain, I have migraines, my neck is messed up from fainting in the past, have buldging discs and arthritis in neck and lower back. Not sure how I got it in my lower back..... Have been having lung/ breathing difficulties lately , not sure why. Going to see an allergist/pulmonary doctor soon to see what's going on there, until then I have a nebulizer machine to help me breathe when my lungs and chest tighten up ,cause me to gasp for air and become very lightheaded... I have endometriosis, have been dealing with that since I was 11. Runs in my family ,and I'm the lucky one out of my two older sisters who got it. (Hardly lucky) I have a ruptured tendon and bone spur in foot which will need surgery eventually. I have myofascial pain syndrome . all of this is way too much for one person to go through. I wouldn't wish what I suffer with upon my worse enemy. Its horrible and I pray that god will heal me one day. Until then, I do what I can, when I can... And I'm not hard on myself for not being able to do something that was planned , I wanted to do, or needed to get done, when symptoms of CFS flare up, that comes first, everything else must be put on hold until you have the energy to do it. My entire body feels like it has a ton of bricks weighing me down. Every move I make hurts horribly ! In a way, I feel like this illness rules my life and has taken over me. I feel like I can't do all that I was able, but I still try doing what I love to do , just lightly and in moderation now. I never know how I will feel from day to day, I had to leave my job, and am now babysitting a few days a week to make some money. I can't work a real job ,at least not now. I was calling out too much and having to leave early from feeling so terrible.
I hope everyone who reads this enjoyed it. If you have any questions about anything CFS related, I will be more than happy to help. I understand the illness, I live it ! Only people with CFS understand what it feels like!!! Normal people say, you look great ,how can you be sick?! I hate that!!!!