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Old 11-05-2007, 02:38 PM   #1
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Unhappy HELP! VERY desperate! My quality of life is so low due to fatigue

This is going to be a long post because I have suffered from chronic fatigue for 10 years and really want an answer, so I will provide as many details as I can. My quality of life is so low due to fatigue that I am very suicidal and desperate. No doctors can help me and nobody online seems to have a clue as to what is going on.

Here's a side note: It's amazing that people blame drugs as causing addiction when the underlying symptom is usually something else, and the drug addict is merely self-medicating. I work at a drug rehabilitation clinic helping addicts quit, and the reason most people get addicted is because their underlying conditions are never treated, sometimes never diagnosed, so the patient feels the need to resort to medicating himself.

For example, my fatigue is ruining my life and I have currently justified that I would rather use Ritalin or methamphetamine daily than to succumb to feeling like garbage every single day of my life. My doctors refuse to prescribe me even something as benign as Modafinil.

I am 22 years old. I always feel tired and run-down. I sleep 8 hours a day, and wake up feeling like ****. I generally don't wake up in the middle of the night and I don't wake up gasping for air, but I have not been tested for sleep apnea and I do not snore.

I get tired as the day progresses, but during my entire day, I have a strong urge to sleep. At a red light, while the professor is talking, when I'm eating, when I'm walking, I always have a desire to just take a deep breath and keep my eyes closed and drift into sleep. I only stay awake by chemical means (stimulants and sugars) or by doing things like chanting or holotropic breathwork (usually when I'm falling asleep on the wheel) - where I basically cup my hands over my mouth and force myself to hyperventilate for a strong head rush.

I have gone through a spectrum of diets, none of which seem to provide any lasting relief. high fat, low fat, vegan, raw vegan, etc.. nowadays I simply avoid soda, anything containing "chemicals" and try to eat as much unprocessed food as possible.

I feel sleep deprived. If anyone has been sleep deprived or very tired, they know that they are unable to process information and are irritable. Imagine feeling sleep deprived for years on end. I carry around a mental fog and I am always hazy. I am basically a zombie. I look like one, I talk like one, I move like one. I can write just fine, but I can't speak properly because I have no energy and I come off sounding like the dude in Napolean Dynamite, but way harsher because being sleep deprived for so long makes you VERY irritable! I hate everyone and the slightest nuisance ticks me off.

I have absolutely no enthusiasm for life. Good things happen, bad things happen, but my mental fog is so strong that I feel insulated from life.

I spend many days sitting at home crying over this problem, because I feel that the medical community has let me down. I hate visiting doctors because their clinics are basically assembly lines. 10 small rooms, I sit and wait, doctor comes in, gives me his vague opinion and then tells me to schedule an appointment for next week or refers me to one of his ******** friends who repeat the same thing.

Here's a major problem I have: I have been suffering from this for so long that I have developed work-arounds for every symptom. I don't LOOK ill. In fact I'm quite handsome and charming and nobody would suspect anything wrong with me. Not even doctors, who say that I just need "rehab."

Blood tests say I have a Thalassemias trait (only the trait, not illness), but iron/B12 levels and everything is OK or better - nothing is physically wrong with me. I don't have sleep apnea, and doctors only point out that it's probably a psychological disorder.

I don't know what to do. Anti-anxiety and anti-depressant meds don't help much, and doctors refuse to prescribe any stimulant because they're afraid of getting in trouble since my problem isn't ADD (although being tired all the time doesn't help me concentrate). Maybe I look healthy so they assume I'm faking? Please help!

 
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Old 11-06-2007, 02:21 PM   #2
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Re: HELP! VERY desperate! My quality of life is so low due to fatigue

i'm sorry you're having such a hard time, i can sympathise. afraid i can't offer any great answers tho.
you say you use stimulants to stay awake, can you say which ones? you mentioned modafinil - have you tried that yourself? i've been trying it for a few weeks, and have found it moderately helpful.

 
Old 11-06-2007, 09:15 PM   #3
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Re: HELP! VERY desperate! My quality of life is so low due to fatigue

Hi Joe....my heart goes out to you. I think many people feel the same as you about going from doctor to doctor and get the same old thing...here take this antidepressant...blah, blah, blah...

I am wondering what type of tests have they ran on you? Meaning have they checked for Epstein Barr Virus? Cytomeglovirus? Chlamydia Pnumoniae bacteria? has you thyroid been checked? have you been tested for Lyme Disease with a Western Blot? have you had your seriotinin level checked?

Stimulants as you know will only cover the problem and actually in the long run make things worse.

My doctor who treats the issues I have written above just put me on Iodoral (Iodine) ...You can find alot of imformation on line about it. And you can even order on line. I have been doing antibiotics for about 8 years and antiviruals for little over a year now...the Iodoral has really helped with my mental and some lift to it...

don't give up looking for answers. There are many reasons why we feel the way we do ...It took me about 15 years to find ONE doctor to believe just how horrid I was feeling...I am VERY picky now on what doctor I see. I pretty much now do my own foot work like you are trying to do to find answers...I have my second favorite doctor that I see now who listens and believes that alot of peoples problems stems from virus's, bacteria, micorbacteriums protozoa's...ahhhh those little hiddien creatures that love to lurk inside of us....

Hope you can find some answers soon!


 
Old 11-25-2007, 11:46 AM   #4
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Re: HELP! VERY desperate! My quality of life is so low due to fatigue

hi joe,
i have recently been diagnosed with CFS and was told that it was caused by a case of mono that i had 10 years ago. the best advise that i can think of is find a doctor that you trust and like and have them run tests. I know that it sucks but the only way you are going to get answers is to run the tests and find out what it is. i started out seeing a sleep specialist and they tested me for narcolepsy. turns out that i have insomnia which is causing severe depression and is complicated by the CFS. each disorder feeds off the other and it can be a never ending cycle unless you do something to break that cycle. have you seen a psychologist? i dreaded going to see one because i was soo afraid that i was going to turn out like the rest of my family. there is a long line of suicides and depression (bi-polar disorder) in my family and i didnt want that for myself. but in the long run it turns out that i am not bi-polar (i was tested for that too) and that my illness can be treated. it isnt a psychological disorder that is causing my insomnia. its my insomnia that is causing a psychological disorder. i have been like this for about 2 years and where as that isnt the 10 years you have in, i think i can still say that i know some of your pain. i fall asleep at work and in meetings all the time. even though you may sleep 8 hours a night you may no be getting the quality of sleep needed to be rested and functional. my doc gave me a sleep journal and it logs what time you go to bed, if you wake up at night and how you feel when you wake up. according to the journal i was going to bed at 10 and getting up at 7am, which you would think is more then enough sleep. then they found that i dont sleep deeply enough and that is what is causing my problems. keep in mind that it may not be just one thing causing problems. when they ran all the tests on me they found 3 problems all feeding off each other.
good luck to you and keep us posted.
Emm

 
Old 01-17-2008, 05:05 PM   #5
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Re: HELP! VERY desperate! My quality of life is so low due to fatigue

Hey Joe, a quick question, what stimulants do you use and how often. I'm going to be a little harsh here and say that you sound like you are hiding or excusing some addiction or other! (I don't know what, could just be caffeine... hell I know that 4+ cups of coffee a day and I am a zombie 24/7).

I'm not being judgmental, it is rather my impression. That's my feedback on what you were saying. My advice would be to come clean, even if it's just sugar or caffeine... challenge yourself to detox for a few days and just see if it is contributing to your lethargy and fogginess. Another thing that overuse of stimulants definitely do to me is make me feel I've "always" felt this way. You may find you have a different headspace and better answers if you stop walking around overstimulated - even if your energy does bottom out.

Good luck with it all.

PS... in the event you have a more serious addiction problem such as methamphetamines, you know deep down you need help. I have friends who have really stuffed themselves and their lives on that because they were in denial about addiction. It's your choice to be like them or be smarter about it and eliminate it before you try and sort the mess out. CFS etc, certainly can't be tackled before debilitating drug addiction. Again, good luck, get some help if you need it!

Last edited by subbster; 01-17-2008 at 05:14 PM.

 
Old 01-17-2008, 06:09 PM   #6
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Re: HELP! VERY desperate! My quality of life is so low due to fatigue

Hi Joe - sorry that you are going through such a tough time. I really do sympathise with you and understand how you feel, especially with being let down by the medical profession - I have been several times. Also, I understand the part about 'looking normal' & no one believing you - I am going through the same thing, particularly with my own family. As far as they know, I could be faking this. If only they knew exactly what this feels like.

I agree with some of the points that the previous person made regarding stimulants. You aren't doing your body any good by using them, even caffeine, as they drain your adrenal glands. You need to have healthy adrenal glands to help you cope through physically and mentally demanding times. When I first became ill, I was pretty much living on coffee, Coca Cola and sweet foods to keep me going. But it didn't do me any good in the long run. These short 'hits' and 'bursts' that you give your body make your adrenal glands pump out what they can, leaving them with nothing much in the end to keep you functioning like a normal person.

Try taking some supplements which support your adrenal glands and help them get healthy again - Siberian Ginseng and Liquorice are great. Also, I recommend taking a vitamin B complex (the adrenal glands need them, especially vitamin B5). If you aren't too sure about the natural stuff - a naturopath can be really helpful. Taking natural supplements takes time, but I have seen results with the regimen my naturopath recommended. And naturopaths look at the CAUSE of your symptoms - they don't just treat symptoms like narrow minded doctors do.

Also, with your diet - make sure that you eat plenty of complex carbohydrates (wholegrain breads and cereals), pasta, fruit and vegetables. And always include some form of protein with each meal and snack (meat, dairy products, eggs). Also, make sure you eat something every 3 hours to keep your energy up. Have breakfast before 10am, a snack inbetween, and have lunch early (12pm-1pm). And don't forget an afternoon snack around 3pm to avoid that afternoon energy dip. Then dinner should be between 5pm to 6pm. (I know I may sound paranoid with the 'timing', but these times help to minimise the stress on your adrenal glands due to blood sugar dips).

Good luck - don't give up hope. Your body has just been through a stressful time, and it needs to get better. There is no way you can fake this, and those who haven't been through it will never understand what it is like, so they have no right to judge you like that. There are people here who know how you feel and understand what you are going through - you are not alone.

 
Old 01-18-2008, 02:32 AM   #7
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Re: HELP! VERY desperate! My quality of life is so low due to fatigue

Sounds like your sick and tired of being sick and tired, the first thing you need to do and do it now is get tests done, if you haven't already get these tests done. Tell your doctor you want these tests done and don't take no for an answer. And if he can't do them find someone who will.

Blood

Thyroid Profile
Vitamin D Hydroxy 25
CMP 20 (Complete Metabolic Panel)
Glucose (Fasting)

Hair Mineral Analysis

Should check your mineral utilization, if low on some take
supplements, if high on some avoid, work with your doctor using these credible results.

Get a copy of these results and save them for yourself!!!!

From what your saying it sounds like you have some kind of substance abuse. Whatever it is get rid of it, go back to raw veggies, fruits, nuts and seeds. Sounds like your liver is the problem. Do you get more tired after eating food? Do you have low or high blood pressure, low or high cholesterol?

 
Old 01-20-2008, 03:43 PM   #8
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Re: HELP! VERY desperate! My quality of life is so low due to fatigue

Here's my take on stimulants, being a person who is 1.) diagnosed with chronic fatigue and fibromyalgia and literally tired and weak 24 hours a day, 7 days a week, 365 days a year for the past four years, and 2.) prescribed adderall and provigil regularly and has tried every natural supplement, herb, drink, diet and exercise/accupuncture/stretching/breathing technique out there:

stimulants do virtually NOTHING to relieve my severe fatigue. I truly believe that if the fatigue is that severe and the underlying cause is not determined and treated, no amount of stimulant medication can help it very much. (I'm ONLY speaking from my own experience, however.) I can and have taken 60mg of Adderall and fallen asleep.

Now, here's what I also think (and you can agree or disagree): If you're not severly fatigued and you use stimulants, it can "speed" you up, but so many people talk about the "crash" after a stimulant wears off that I wonder if using stimulants ultimately results in MORE fatigue because you're speeding up and then crashing so hard.

Why do your doctors think you need rehab? What are you self-medicating with? My take, and I'm not being judgemental or trying to offend you, but if you're self-medicating with stimulants you may be doing more harm than good by "covering up" the fatigue with whatever you're using and then crashing and feeling worse than before. It's best to really get down to the root of the problem and try to treat it if possible. I agree with the previous posts that there may be some things you haven't been tested for that you should look into. Good luck!

 
Old 01-21-2008, 08:13 PM   #9
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Re: HELP! VERY desperate! My quality of life is so low due to fatigue

Wow.... I know what you mean about fatigue... I also take Adderall, since my stroke. I am 44 years old and feel like 100. I had thalamus/brainstem stroke in May and thought I was making progress in my recovery when Boom in October I was so sick, my joints ached, headaches and night sweats. My Blood Sed rate was 80 and my C reactive protein was 3.7, but according to doctors I should be hunky dory. They retested my blood one month later and everything came back fairly normal with the results of High Protein 8.7/ albumin 4.9, Low Creactive Protein <.1 ; however I had High TSH 3rd Generation of 6.61. So he put me on Synthroid. Now, I am so tired that I think my whole body is going to shut down, basically I feel like Im dieing and the doctors dont give a poop. It isnt normal to be this tired. I am 5'1" and weigh 107 (and losing). I used to work out three times a week or if it was warm outside ride my bicycle 30 to 70 miles a day. Now Im lucky if I can get up and clean myself or eat. I am feeling so dissappointed with doctors. Really makes a person feel like giving up. I hope you get good educated answers to your illness and I hope you start feeling better soon.

Kim

 
Old 01-22-2008, 04:52 PM   #10
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Thumbs up Re: HELP! VERY desperate! My quality of life is so low due to fatigue

did you know that there are integrated doctors. They are on insurance too. They are real md's who incorporate alternative meds. CFS is a condition that is a integrated doctors speciality. Truely. I do see one. Not for everything, for cfs. Search acam and see where their is doctor near you. They give me b12 shots and i was on diflucan for a while. It was soooooooooooooo worth it. I have since called and told my regular md and he thought it was interesting and I sent hil all the info. I was given. An integrated doctor is an md and ran a lot of bloodwork and found a thyroid low level and a b12 low level--very very very very useful. Just be sure to research the topic slow and careful. Make sure your integrated docor is an MD. at this time my own doctor gives me the b12 shots and follows thru, everything they did was right on the mark and my own docot agreed, he just did not know what to do when i went to him first.

 
Old 02-02-2008, 08:32 PM   #11
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Re: HELP! VERY desperate! My quality of life is so low due to fatigue

i was dignosed with cfs in 1994 when some doctors thought it was a mental problem. my doctor gave me steriods, and antibotics. it lasted about 6 months and i started to get better. i still have it sometimes for a week or so and sometimes only a few days. when i asked the doctor about this, he told me that is why they call it chronic. oh yes, the way he dignosed it was with the epstine barr blood test. this is the same virus that causes mono. it also has caused serious heart problems as i got older

 
Old 02-02-2008, 08:36 PM   #12
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Re: HELP! VERY desperate! My quality of life is so low due to fatigue

Quote:
Originally Posted by KMADRA View Post
i was dignosed with cfs in 1994 when some doctors thought it was a mental problem. my doctor gave me steriods, and antibotics. it lasted about 6 months and i started to get better. i still have it sometimes for a week or so and sometimes only a few days. when i asked the doctor about this, he told me that is why they call it chronic. oh yes, the way he dignosed it was with the epstine barr blood test. this is the same virus that causes mono. it also has caused serious heart problems as i got older

 
Old 02-04-2008, 08:36 PM   #13
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Wink Re: HELP! VERY desperate! My quality of life is so low due to fatigue

yes, i was tested for lyme and just about everything else. the reason that i was put on antibotics was the fact that with cfs your immune system goes to pot andyou stay sick with colds and any other disease that comes along. i was later dignosed with addison's and went to the university medical center in charleston sc. as i got better my cortosol level got better. when i have a relapse everything goes bad again but with the grace of God and good Doctors the sessions don't lasst as long anymore.

 
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