Hello, I see that you are a senior member. I am trying to find info so let me ask some questions. I don`t want medical advice just info if anything has really worked for chronic fatigue. Doctors can`t find anything else wrong with me, but more tests are coming. He is schedualing me for an MRI of my brain, I understand his reasoning behind this, my dad died from brain cancer, they found it to late.

I have been tested for lyme and west nile, nothing. I had mono in march of 2003, I am older, 53 and I guess chronic fatigue can follow mono sometimes. Chest x-ray, nothing they thought I might have pneumonnia. All kinds of blood work, urine tests, regular visits to the doc, blood pressures fine heart lungs sound fine. I have no clues, but I am basically stuck in the house. Its seems everything makes me tired, standing, reading, staggering ( what I do really can`t be called walking) I don`t really feel dizzy but I fall down, dis-oriented would be more like it just incredibly tired. My shoulders and neck, upper arms have ached since I got the mono, now my legs do. IBS, headaches, just seems like its something new every week.

How much testing needs to be done? I have trouble getting to the doctor because I cannot be sure I will feel well enough to leave the house. The doctor had me try to walk heel to toe in his office, like a drunk test. I couldn`t do it without holding on or catching myself on the counter. Then he had me try to do it backward, I couldn`t do it at all. Is that normal for CFS? I have no clue.

I have looked at some websites for CFS and there just seems to be no really reliable answers. I can`t even remember pass words.LOL Suggestions? any thing help you, try everything and or anything? Thanks !

Hello, I see that you are a senior member. I am trying to find info so let me ask some questions. I don`t want medical advice just info if anything has really worked for chronic fatigue. Doctors can`t find anything else wrong with me, but more tests are coming. He is schedualing me for an MRI of my brain, I understand his reasoning behind this, my dad died from brain cancer, they found it to late.

I have been tested for lyme and west nile, nothing. I had mono in march of 2003, I am older, 53 and I guess chronic fatigue can follow mono sometimes. Chest x-ray, nothing they thought I might have pneumonnia. All kinds of blood work, urine tests, regular visits to the doc, blood pressures fine heart lungs sound fine. I have no clues, but I am basically stuck in the house. Its seems everything makes me tired, standing, reading, staggering ( what I do really can`t be called walking) I don`t really feel dizzy but I fall down, dis-oriented would be more like it just incredibly tired. My shoulders and neck, upper arms have ached since I got the mono, now my legs do. IBS, headaches, just seems like its something new every week.

How much testing needs to be done? I have trouble getting to the doctor because I cannot be sure I will feel well enough to leave the house. The doctor had me try to walk heel to toe in his office, like a drunk test. I couldn`t do it without holding on or catching myself on the counter. Then he had me try to do it backward, I couldn`t do it at all. Is that normal for CFS? I have no clue.

I have looked at some websites for CFS and there just seems to be no really reliable answers. I can`t even remember pass words.LOL Suggestions? any thing help you, try everything and or anything? Thanks !

Sleeper,

Your saga is not at all unusual for someone with CFIDS. Many of us here have gone through the exact thing, i.e. being subjected to every diagnostic test known to man, and still no answers. The problem is . . . there is no answer to date. The tests will stop when you have had enough of them. I understand the frustration - your entire life has changed, you feel as if you are dying and no one can tell you exactly what the problem is. Not only do the MD's not know, many of them do not even recognize CFIDS as a legitimate illness. If you are still in the phase of wanting to have tests, then find a doctor who is savy about this. They do exist and I would query them before making an appointment. I happen to have a doc who is very knowledable about CFIDS; however, I have had this now for about 12 years so I feel that I understand my body and the process it goes through when in a "flare" better than anyone else so I no longer use the medical establishment for this problem.

Here is what I suggest:

1) Become knowledgable. You will not feel so lost, hopeless and alone if you understand the nature of the illness and hear from others who have had, or are experiencing, the same symptoms. There are many good books on the subject. One of the first to come out years ago was called "Running on Empty". Also, visit the CFIDS Fdn. home page for accurate information and support.

2) I don't know your persuasion, but I have always leaned toward alternative methods of healing. Western medicine is good for diagnostics, but in the case of CFIDS, you are ruling out other illnesses rather than pinpointing a specific anomaly. At some point in your "testing" you will realize you are on a treadmill that never stops. I have tried everything out there and what works best for me is a combination of vitamin therapy and Chinese boiling herbs. But everyone's "flares" are different. Since this effects every organ system any one of them might be involved, or even more than one. Find a regime that works best for you.

3) I also have Hypothyroidism/Hashimostos. Many people who have CFIDS also have a thyroid problem as well. This can be easily and accurately tested. Make sure you don't have this. If you do, it can be easily dealt with but this will not change your CFIDS symptoms. You will only be dealing with one aspect - your thyroid.

4) If you are in the beginning stages of the illness (say the first 6 years) you probably feel terrible pretty much all of the time. But this will start to change as your symptoms begin to abate a bit and you will begin to develop "flares", periods where your symptoms flare up for a period of time and then wane. Pay attention to what causes your "flares" so you can do things that avoid bringing them on. For example, for me (and most people who have CFIDS) these are some of the factors: overexercising, even just slightly;exposure to chemical odors, such as paint, perfume,etc.; stress, anger, grief, etc. that wouldn't be another's undoing can cause severe reactions for someone with CFIDS; I don't know if you drink alcohol but that also can produce problems. I find I also do better without, or limiting, wheat and corn products and maintaining a low carb way of eating tends to give me more energy.

Again, knowledge is power. You will not feel so helpless if you focus on your body and what makes you feel better, worse. You will also have to start educating family and friends who may not understand the nature of the illness and why you are not the same person you used to be. Lastly, don't despair as that will only contribute to the continuance of your symptoms.

I hope this has helped you a bit, but please feel free to post again if you have further questions.

All the best!

Thanks peregrine, I am probably in a better position than most people that have this. I was able to re-tire and not lose my job because of the illness. I believe that the doctor check for thyroid function and it was normal. Its getting a little hard to keep track of all the tests.

I have read a number of articles on a bunch of different webisites, people that have this illness homepages. To me its all confusing, its seems a lot of them seem to be pushing a product or method of treatment and as I saw on one website if there was a relieable treatment the docotrs would know.

I have been around long enough and seen enough things happen, so I am not depressed. I sort of had other plans,LOL didn`t we all. I am to young to be retired and would like to work again.

I just can`t seem to find anything that has helped just a little. I seem to keep getting worse. A couple of people my wife knows also have family members that have this illness. Its like a living horror story, I talked to one lady on the phone and she also seems to think I haven`t had it long enough. Well way to long for me! Another lady we met is in a wheel chair because of it. I went from being able to walk the dogs around the front yard, to having to sleep in the front yard to make sure I would hear the package delivery guy. Phone, door bells, alarms, house full of people no sure thing that I will wake up. I used to be up and outside as soon as the sun hit my window.

My wife won`t let me go outside with snow or ice on the ground unless one of my kids or someone else is with me. (I live in the country and the neighbors are kind of far) I might not be noticed if I fall and get hurt.

Life is a continuous series of change and I am trying to adapt. Is there a point where I should say ok enough testing ? I am not much on taking pills, it seems like there is some risk in any of them. I have taken tylenol occasionally for the headaches, and pepto-bismol occasionally for the nausea and thats it except for daily vitamins. No diet change has helped so far, I wasn`t much of a drinker before I got sick, maybe a 12 pack of beer a year. Now for some reason it tastes really bad. I might have had 3 beers last year,yuck.

My wife and kids would like me to be back to normal, I was MR. Fix-it, now its MR. forget-it. Maybe tomorrow guy. LOL Stuff I could do before 8 am now might not get done in a month or at all. If its more than 10 or 15 miles away someone else has to drive me or I need a nap before the return trip. I used to drive 200-300 miles a day. I am trying to face the strange changes.LOL

Good Luck to you and anyone else that has this, it takes some adjustment. I am working on it. Yes slowly.LOL Just getting a little feed up with being poked and prodded and trips to the doctor. Let me sleep, don`t bother me.LOL