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kingsb 11-03-2012 02:56 AM

Extreme fatigue for years - still no diagnosis
Hello all,

First I'd like to thank you for taking the time to read my post. Fatigue is a symptom of so many things that almost every person out there could say that they've had it in some shape or form, at some point in their life. For me, though, I'm years past the point of wondering if something is truly wrong or if I'm just complaining about something that everyone else deals with in their own way.

My fatigue started in my early 20s, out of the blue. I'm 31 now and the only thing that sticks out from the days of its onset were the itchy eyes that I never had had before that. Since then I've always had itchy eyes and the fatigue has remained the same, if not worsened.

For the longest time I didn't want to complain so I just dealt with it. Then came the comments such as "don't look so sad" or "people are talking about you at work and wondering if you're okay". Or having strangers, coworkers or friends assume that you are apathetic.

So I reached a point where I thought "I have to figure this out. I need to find doctors, specialists - whoever can help me". I've visited about 15 GPs since my mid-20s. I've seen a Neurologist, Allergist, Naturopath, Endocrinologist, Internist, Psychologist and Psychiatrist. I've done the following tests: Multiple extensive blood tests, EKG, AM/PM Cortisol, sleep latency, 99 food allergy test, Celiac test. I put myself on antidepressants for months to rule out depression. Diet-wise, I've attempted months of gluten free, alcohol free and caffeine free diets. I tried excessive amounts of exercise. I tried napping every single afternoon for at least an hour. I tried drinking more water than I was thirsty for. I saw a Naturopath for months and tried many treatments, including vitamin B shots. The Naturopath even said that they saw an overall improvement in my health but it didn't change my symptoms at all.

I can say with certainty that not one attempt to alleviate my symptoms has made an ounce of difference. I would know in a split second if I was improving because it would be outside of my norm, which is constant and predictable.

Physically, I am 6'1" and have always weighed between 170-190 pounds. I've always had exercise as part of my day to day, including a few years of martial arts, some years of weight lifting, consistently exercising at home, yoga, breathing exercises, regularly biking to work, etc.

I've compiled a list of the symptoms as best I can describe them:

- Extreme fatigue (lethargy, monotone voice, heavy head, itchy heavy eyes, heavy body), worsened while digesting
- Poor circulation (hands go light blue when I'm out in the cold, wounds heal slowly). One doctor advised that I have slightly low blood pressure but the others didn't mention it at all.
- During the worst fatigue, I experience dizziness, mild tunnel vision, trouble concentrating
- Many times I cannot drive for over an hour without stopping for a break / coffee
- Caffeine only offers temporary relief - I never experience a jolt of energy, it's just enough energy to function normally when I really need to focus on something
- No sleep problems that I know of, no sleep apnea, sleep 7-8 hours each night and fall asleep within 5-10 minutes. My wife has noticed nothing at all during the night.
- Nose slightly blocked every day. Not runny, just have to blow my nose 4-5 times a day or it isn't very clear.

Since I feel that I've exhausted the resources of the medical profession I'm posting this with the hope that someone has taken a different route and found their cure, or at least their treatment. And if not, I at least appreciate those who took the time to read this, as I am not the type of person to put the weight of my problems on someone else's back.

Thanks so much

noevr 11-03-2012 08:31 AM

Re: Extreme fatigue for years - still no diagnosis
hi so it sounds like you have some sort of allergy maybe? I know you saw an allergist but the itchy eyes, stuffy nose thing. Has anyone mentioned a sleep test? I too have severe fatigue but it is caused by adrenal disorder (adrenal fatigue). are you taking any vitamins/supplements daily now? They help me somewhat. I am still tired though. just trying to help figure things out, Cathy

wanted to add there's a med I take Provigil (there's a generic for it now too) that's made for those w/ sleep apnea or daytimee sleepiness and I take it when I need to drive long distances. You could give that a try as well.

kingsb 11-04-2012 06:36 PM

Re: Extreme fatigue for years - still no diagnosis
Thanks for your reply, no34evr.

I did have a "sleep latency" test, which I believe is for Narcolepsy. They hooked up a bunch of probes to my head and made me sleep then woke me up abruptly and repeated this 4 times. They said there was nothing abnormal about the test except that I feel asleep really fast each time, but that my actual deep sleep pattern was normal. As well, I don't have sleep apnea.

Perhaps I should see an allergist again for a second opinion. They seem limited to the tests they perform on every patient - they ***** you multiple times and test you with drops of various substances to see if you react to any of them - and if none of them react they show you a pamphlet about having general allergies to being outdoors and recommend a nasal spray. At least that was my experience.

I currently live in a completely different climate than I was in when the issues started. As well, when I visit other countries I never notice any changes, so I assumed it couldn't be an environmental allergy. That's why I went the food allergy route and changed my diet multiple times.

I don't take any vitamins/supplements but for quite a while I was taking multivitamins. All of my blood tests show ideal results, though, so I don't seem to be deficient at all.

Thanks again! Any other insights?


ladybud 11-10-2012 08:08 PM

Re: Extreme fatigue for years - still no diagnosis
You didn't mention one of the most important things to be checked-your thyroid function. Have you had that checked? Also, any checks for anemia or autoimmune disease? Your level of fatigue sounds severe, and there must be a reason that hasn't been uncovered. Allergies may cause mild fatigue, but this sounds like something else is going on. What diseases run in your family? Any strange infections in the past? You are too young to feel this way. Please don't give up. Keep searching and posting.

kingsb 11-11-2012 11:37 AM

Re: Extreme fatigue for years - still no diagnosis
daisakura - "like your body feels like a sack of potatoes all day on bad days even though not sleepy" sounds just like me. None of the GPs ever suggested CFS - I think they like to leave that as a final resort, especially because of my age. Regarding stress: I live a very low stress lifestyle - I only work 4 days a week and don't drive in traffic, don't shop at busy malls, etc, etc. I can honestly say that stress is not a factor. But your symptoms do sound very similar to mine.

ladybud - Yes I've had my thyroid checked multiple times. I just reviewed my old blood tests and they were always right in the middle of the acceptable range. I even had a blood test last week for a completely different reason and nothing was out of range. I've never had any infections in the past. My blood tests also show no signs of anemia. I'm not sure how the doctors test for autoimmune disorders, but I do know that they said they ran the gamut on me and all levels came out normal every time. That's what is so crazy about this - my health on paper is impeccable! My father is slightly anemic but other than that there aren't any diseases in the family. Both my brothers are a bit dopey but I know that their symptoms aren't as severe as mine - they haven't bothered going to get tests so I assume their lives aren't being severely affected by fatigue.

Thanks for your comments!

buff418 11-18-2012 01:57 AM

Re: Extreme fatigue for years - still no diagnosis
CFS is a debilitating condition. In 1993 right before Christmas I got some type of flu. My MD put me in the hospital on IV's for the day, injected me with a strong narcotic and sent me home. I was so exhausted that I did not go back to work for several months.
When I felt better but not like my former self I pursued a cure or at least an explanation.
One doc said I had chronic fatigue which was his specialty. A specialist in infectious diseases said that there are so many viruses with which we could be infected that there is
no way to treat all of them. The best thing to do is manage the symptoms. That is what I have done. Select priorities as to what you need to spend your energy on. Read everything you can. Take what you want and leave the rest. Good luck.

ladybud 11-18-2012 08:48 AM

Re: Extreme fatigue for years - still no diagnosis
I would for sure ask for blood tests for autoimmune disease. These would be for a simple screening a CRP, sed rate, ANA and RA factor. I would also be tested for sleep apnea, even though you think you don't have it. I had it, never knew it, and my husband had no clue either. Treatment for it has made a huge difference. Also ask to get tested for chronic EBV infection. It is a blood panel to see if the mono virus is still active in your body, a cause of CFS. The last idea is to get adrenal function tested, a serum cortisol level at 8 AM and 4 PM for starters. All of these are blood tests, except a screening nightime pulse oximetry recording for the sleep apnea.

RickinOH 11-18-2012 05:56 PM

Re: Extreme fatigue for years - still no diagnosis
I agree that you should have the autoimmune workup if you haven't already had it done. ANA, RF, Sed Rate. Cortisol is a good idea also. EBV has never been proven to cause anything other than mono so I personally think that is a blind alley.

Your hand symptoms remind me of Raynauds Phenomenon. Look it up for more detail. It can exist on its own or be related to an autoimmune disorder.

Of course the thing that stands out the most is that your health has not deteriorated over just keep feeling lousy. And that is contrary to all of the diseases we have you looking up. They usually would show themselves more clearly with time. And this makes you fit in best with the CFS diagnosis in my opinion.

Best wishes.

phoebe368 11-19-2012 01:39 AM

Re: Extreme fatigue for years - still no diagnosis
There is a sleep breathing disorder called "Upper Airway Resistance Syndrome" that causes daytime fatigue. It also causes poor circulation (cold hands, cold feet) and dizziness (orthostatic intolerance). It is common in people with nasal problems. It is detected with an overnight sleep study called a polysomnography which is different from your sleep latency test. The sleep clinic that performs it must specifically tests for UARS (not all do).

griz55 11-22-2012 06:33 PM

Re: Extreme fatigue for years - still no diagnosis
Hi, just joined this board. I've been fatigued and tired since my 20s, now in 50s, just recently had a diagnosis of fibromyalgia, my body aches and my bones do too every day it seems. What I'm doing to cope is this: THC (medical marijuana in an edible form) 20mg of sativa to get me off the couch, more energy, leaves body naturally & also helps with mood. And I get an hour deep tissue massage every other week, I'd get one every week if I could afford it, but I cannot. The 2 measures I describe are not covered by insurance, unfortunately. I pay for these healing treatments, and they are well worth it. Ive tried the cymbalta, and it scared me the 1st day, so never took anymore. I just started talking to people and trying to find a natural course that I could live with, and this is what I found: medical marijuana (sativa for energy) in an edible form and healing massage. Occasionally, I can have a panic attack, for that I keep valium or xanax in med cabinet, do not abuse it at all, I don't take unless I am in panic mode, this keeps me out of the emergency room swearing I'm having a heart attack. I have low thryoid, take 75 mcg of synthroid for that. I believe I acquired fibro after a lengthy illness in my 20s, after that illness (virus) I was never the same, so I know pretty much what caused my system to change. It's taken me 30 years to finally feel I'm not a prisoner in my body anymore, good luck to you. God bless.

kingsb 11-24-2012 02:14 PM

Re: Extreme fatigue for years - still no diagnosis
Thanks for the extra tips. I'll go back to the doctor and request the additional tests that you've all mentioned (I did do the AM/PM Cortisol a few years ago but it came out normal).

For now at least my blue hands are entertaining - in the winter people can draw things on my hands with their fingers and leave white lines that stay there for 20-30 seconds - lol.

griz55 11-24-2012 03:47 PM

Re: Extreme fatigue for years - still no diagnosis
Hi Ladybud, just reading your post to kingsb and was wondering about the adrenal function panel and I am interested in looking into that and how you happened to look into it for yourself, and thank goodness you had the sleep apnea test. I've had that too and like kingsb sleep apnea was ruled out although I always awaken to feeling tired and unrefreshed sleep. My frustration is what kingsb talks about trying: trying everything it seems, and nothing works, and I am coming to the realization of it all. I'd like to find out more about the adrenals and thanks for bringing that up, I'm curious as well the mono virus connection of it being active in my body, I've never been told I had mono but maybe I did, and I've had the screening for sleep apnea,thanks for bringing this out as my drs have never discussed these tests, and I imagine these tests are ones that we have to scream and fight to get, that's the part I hate always have to insist and be strong willed with this drs to get my point across about fibromyalgia, where I am at the drs i've gone to are clueless to this, and it's so frustrating, I find better information here and things to consider, as drs just will not bring up these extra tests, at least my drs dont, they just want to give me anti depressants, cymbalta, and I tell them I can't live with that stuff, as the times I have tried it, my body did not react well, so I will look into these 2 tests w/my brain fog I've had to write this down in my planner or will forget.

griz55 11-24-2012 03:49 PM

Re: Extreme fatigue for years - still no diagnosis
Ladybud, another question how did you get yr drs to go along with ordering the adrenal panel and the chronic EBV infection tests? any choice words I can use to convince my dr? thank you

Chicabellarox 11-26-2012 11:08 AM

Re: Extreme fatigue for years - still no diagnosis
I am also interested in more adrenal information. I do not understand much about it.
Even though I developed my issues after having a spinal surgery, I do recall a year or two prior to that I got really tired and sick feeling. I was diagnosed with mono, but the dr said the labs were not positive for mono~ he just gave me that diagnosis since I had the symptoms and I was in college, the prime time for getting mono. I wonder if that started it all!? I always felt sleep deprived after that. I was so embarrassed when I went to jobs yawning and sluggish.

Kingsb, have you been tested for Sjogren's Syndrome? There is a lady who uses the boards who was diagnosed with Fibromyalgia for many years. Finally she found out about it and had a test for it and she had it. There is an eye symptom, which made me think of that. It's normally found in women, and in women, there is a sexual symptom as well.

anna2012 11-26-2012 11:33 AM

Re: Extreme fatigue for years - still no diagnosis
Have you ever had an EEG done? They stick sensors to your head and then they can tell if your brain waves are normal.

When people are in different waking states or different states of sleep, they have different brain wave patterns. A person who is very tired/sleepy would have a distinct brain wave pattern. Lack of that pattern on an EEG would rule out a ton of neurological causes. It's very likely, though, that your EEG will show that you are in a state associated with sleep or at least lack of attention. A normal person spends most of their day in a fairly focused and alert state. If you don't feel reasonably focused and alert most days, chances are your brain/nervous system has something to do with it.

You are probably right to be concerned; what you describe doesn't sound like what an average person goes through every day.

If it were me, I'd also have a sleep study done. And double check that your blood sugar is level throughout the day. You don't have to have diabetes for blood sugar changes to make you feel like you're going to drop.

If your EEG turns out to be abnormal, I'd highly recommend EEG neurofeedback. Most places that do EEG neurofeedback treat fibromyalgia and chronic fatigue. They always do EEG's, too, so you can get one there if you wanted. For me it worked very well. On that note...around the time you started having this fatigue, did you have any surgeries that used general anesthetic (like pulling wisdom teeth, etc.) or any head/neck injuries? Even if they seemed not-so-bad, they could've knocked your brain waves out of whack and now they're stuck that way. Doesn't take much, sometimes.

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