It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Chronic Fatigue Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-21-2011, 10:43 AM   #1
Newbie
(male)
 
Join Date: May 2011
Location: Perth, Perthshire, Scotland UK
Posts: 3
rysod HB User
HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

I would like to ask regarding the symptoms, remedies and diagnosis for chronic fatigue syndrome and narcolepsy, including related illnesses or infections.

I have experienced the symptoms which characterise CFS and Narcolepsy for the last 5 years, which can be traced back to when at school.
It was not directly linked to any illness as a post viral infection, however it was not unknown for me to have tonselitis often in my final years of school.

The last 3 years have involved three hospital visits due to glandular fever, and my fatigue has been linked to these episodes.

My symptoms have always caused me distress and 4 years ago received a brain scan of which returned no issues. I then last month received a medical examination by the hospital as recommended by my GP.

The hospital took a healthy amount of blood samples, routine blood pressure and nerve tests to return, again with no odd results which unchecked any thought of being diabetic or other illness traceable through blood.

My doctor and hospital physician has told me there is nothing they can do for me and are sceptical regarding narcolepsy and chronic fatigue syndrome.

The doctor has discussed with me psychological treatment which has not been a very successful idea with my lifestyle and nomadic living as a freelance filmmaker.

I eat properly and stick to a schedule with bed time.
I have no alcohol or drug abuse history or heart disease, liver or lung disease history in the family or personally.

Due to my feeling the way I do, it hampers my every day life and has done for years.
I took a stand with my doctor on my last visit.

Because of my having this for a long time, I have researched possible cures for each syndrome and the pros, cons, side effects and health concerns and relationships to drug medication.

These drugs are now house hold names due to the news coverage regarding students taking drugs such as modafinil and it's related names. Which hurts me to see people using a potentially effective drug for my illness as a recreational release or for study.

These people pay money on online pharmacies and risk being exposed to fake and potentially addictive and dangerous substances.

I took my study notes to my doctor and asked about the potential prescription of any such drugs, to which both doctor and hospital doctor told me they would never let me try this due to it's possible addictive nature. I do know through NHS documents available in libraries and online, that this is an expensive drug, and also that chronic fatigue syndrome is still a new and sometimes doubted illness.

I have researched the possible side effects of said drugs and studies on their usage.
I doubt it would be something I would like to take everyday, but rather to take when I have days which are worse than others to improve my living without dependancy.

I would like to know what I should do.
I can't live like this and my hospital and doctor has told me they can do nothing for me and won't give me a chance to test a sample of this drug for it's possible effects.

I do not want to risk an online pharmacy for obvious reasons and having no where to turn to now my medical physicians are at a dead end, I am told I just have to live like this, and with no true statment from either if I have narcolepsy OR Chronic fatigue syndrome, or something else.

I was not tested or scanned for any internal organ issues other than my brain 4 years ago, and they tested my muscle/bone pain by feeling my joints and saying that nothing seemed out of the ordinary.

I feel that they haven't completely believed me, or that they doubt my symptoms or even that they are psychosomatic.

I am 22 and symptoms are as follows:

• Lethargic and sleepy all day even after a good meal or healthy dose of sleep.
• Muscle or joint pains (not sure if it is muscular or something else, it's difficult to describe)
• Very bad memory compared to what I used to have
• Low attention span
• Dizzy spells
• Head aches
• Able to intake information well

The most disruptive symptom I have is the sleepiness. I could at any moment in the day fall asleep if I so wished, and find it difficult to stay awake. I do not however have the common narcolepsy symptom of falling asleep/fainting on the spot, which i'm not sure is a prominent symptom in all cases.

I really need advise and have no one to talk to unless I change my health practice. Though I feel that I would reach the same conclusion with them (as I understand that if one doctor in my county deny me medication, it is because drugs are approved by a board, allowing certain drugs to me administered for certain symptoms and where alternatives are given in place of non approved drugs).


Ry

 
The following user gives a hug of support to rysod:
melody1 (05-28-2011)
Sponsors Lightbulb
   
Old 05-21-2011, 11:46 AM   #2
Registered User
(female)
 
Join Date: May 2011
Location: San Francisco, CA, USA
Posts: 2
sleepykitty44 HB User
Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

I'm so sorry you are dealing with such unhelpful caregivers. It is a shame that when medical doctors cannot explain a symptom, they blame the patient. Better to label their patient crazy than admit they don't know something!

The symptoms you describe are very common in people who have food allergies and/or sensitivities. Common staple foods like wheat, eggs, citrus, and dairy, if you are intolerant to them, can cause symptoms like mental fog, sleepiness, and fatigue. Often the conventional medical tests cannot identify food sensitivities. Their tests for food allergies are skin ***** tests and will only show positive results for foods that create a specific allergic reaction. Many foods which are a problem for you will not necessarily create this skin reaction.

So, it is up to you and trial and error to see what makes you feel awful. Many nutritionists recommend that as a start, you eliminate the most common problem foods--wheat, sugar, and dairy--and see how you feel. You can also try eliminating other common allergy sources: eggs, citrus fruits, soy, and other grains.

You might also find relief by modifying your overall diet. I struggled with fatigue and sleepiness for most of my life, until I tried a low-carb diet for weight loss. I didn't loste that much weight but my energy level was a revelation. After much experimentation I find I function best on a diet high in fat and protein (from organic meats, eggs, butter, dairy, olive and coconut oils), and low in carbohydrates. I feel the best when I do not eat grains, potatoes, sugar, or other starch at all, and when I am getting adequate protein (1 gram/pound of body weight each day). I do sometimes give in to the lure of starchy or sugary foods and then my energy level inevitably goes down.

Of course I can't pretend to know the source of your symptoms, but I wanted to chime in and propose that you look into nutritional treatment. I have heard of so many people with your symptoms find what is essentially a cure when they change their diet.

A nutritionist can be of great help. I think you will be surprised at how constructive and encouraging a nutritionist will be when you explain your symptoms, because they will be symptoms she knows how to address. You will want to look for a wholistic or alternative nutritionist (the hospital-based ones are too loyal to conventional medicine to be of much help in these cases) and one that has a university degree in nutrition and some sort of professional certification. You also might look up books by Jonny Bowden, who is my absolute favorite author on the topic. He has a very wholistic approach but is also very scientific.

I hope this helps!

Last edited by sleepykitty44; 05-21-2011 at 12:07 PM.

 
The Following 3 Users Say Thank You to sleepykitty44 For This Useful Post:
melody1 (05-23-2011), rysod (05-21-2011)
Old 05-21-2011, 12:46 PM   #3
Newbie
(male)
 
Join Date: May 2011
Location: Perth, Perthshire, Scotland UK
Posts: 3
rysod HB User
Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

Thank you for replying to this post.

It is lovely to hear from someone, after posting queries all over different forums and not receiving anything at all.

Not only a reply but an avenue to investigate.

I have been tested for the most common of allergic reactions associated with food eg. sugar with various diabetic tests and wheat and gluten. Dairy products I have been asked to increase in my diet as a plea to help my bones, however I think they are missing why I have my pains instead of investigating further.

I have also seen a personal trainer whilst training for a mountain climb.
During that period he gave me nutritional advice on how to increase energy levels however not with the specific intentions of finding a problem area associated with my symptoms.

I hope that I might be able to speak with him and see if he has any suggestions. I do know he has clients who have MS and therefore may have some methods which will work for me too...

I would just love to place a name on what I have and work specifically on that focus of healing it.

Thank you again for your reply.

It has opened doors!

 
The following user gives a hug of support to rysod:
melody1 (05-23-2011)
The Following User Says Thank You to rysod For This Useful Post:
melody1 (08-04-2012)
Old 05-23-2011, 12:35 PM   #4
Junior Member
(female)
 
Join Date: Feb 2009
Location: Warren, OH
Posts: 32
melody1 HB User
Wink Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

I have dealt with these problems for over 35 years. I did find a doctor that prescribed "dexedrine" for fatigue. The beat of luck to you.

 
Old 05-25-2011, 02:06 PM   #5
Registered User
(female)
 
Join Date: May 2011
Location: San Francisco, CA, USA
Posts: 2
sleepykitty44 HB User
Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

You're welcome, I'm glad it was helpful! I was doing some research today < edited >

Best of luck!

Last edited by hb-mod; 05-25-2011 at 02:30 PM. Reason: Please don't post unapproved websites, per Posting Policy. Thanks.

 
Old 05-25-2011, 02:15 PM   #6
Senior Veteran
(female)
 
Join Date: Feb 2007
Location: Chester, VA
Posts: 1,723
noevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB Usernoevr HB User
Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

Hi I also have CFS OR SOMETHING...have had my thyroid tested, adrenals, etc. I have been given a prescription for provigil which is non-addictive and works a little diffrently than the others the only thing is it will increase those headaches, I have a problem with that. So, I just save it for when I really need it, to drive long distances or to spend a fun day with my family.

I could sleep the whole day away if given the opportunity. Anytime someone takes a picture of me I looked zoned out (half asleep).

I am interested in this diet idea even though it makes me tired just to think of eating differently, I don't even have the energy to cook, hubby does most of it.

good luck,

cj

 
Old 05-25-2011, 03:24 PM   #7
Junior Member
(female)
 
Join Date: Feb 2009
Location: Warren, OH
Posts: 32
melody1 HB User
Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

I didn't receive all of your response to me.

< edited >

Last edited by hb-mod; 05-25-2011 at 03:25 PM. Reason: Please do not post, or request contact information, such as email address, phone or name.

 
Old 05-28-2011, 05:21 PM   #8
Junior Member
(female)
 
Join Date: Feb 2009
Location: Warren, OH
Posts: 32
melody1 HB User
Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

I am very sorry for my error.

 
Old 10-25-2011, 04:16 AM   #9
Newbie
(female)
 
dzeldaz's Avatar
 
Join Date: Oct 2011
Location: Not NYC, NY
Posts: 4
dzeldaz HB User
Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

I hope you are feeling better by now. I wanted to add that I have a diagnosis of narcolepsy. I also suffer from migraines. I have been on Provigil for over two years and the medication is working well and does not increase or have an affect on my headaches.

Not all narcoleptics are cataplectic. I am not. I fall asleep suddenly, though do not fall due to loss of muscle control.

Again, I hope you are feeling better.
__________________
Dzeldaz

 
Old 08-02-2012, 05:31 PM   #10
Newbie
(female)
 
Join Date: Aug 2012
Posts: 7
xtingley HB User
Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

Hi, You are having a bad time, aren't you! Let's start with glandular fever, which is more commonly known as mono...mononucleosis. You might want to look up "chronic mononucleosis" since you have had several relapses. People who get mono usually have a below-normal immune system. With mono, once a person starts feeling better they quite often go right back to their usual activities and don't take the time to totally recover, so they eventually relapse. When I had it at age 19, my doctor said I had to do a minimum of 3 weeks bedrest before thinking of returning to school when I felt normal again.
Fibromyalgia is diagnosed with a lot of tests. Basically it is diagnosed by ruling out any other possible cause of your symptoms, plus having at least eleven out of 18 tender points on your body. These tender points are in specific areas in your body that if three pounds of pressure is applied to that area, it causes severe pain. You can see where these points pots are by doing a google image search using the term: "fibromyalgia tender points".
Moving on to the daytime sleepiness....once you find a good doctor, I strongly recommend you get a sleep study done. I'm in Canada, and here you can rent a machine overnight that will monitor your sleep and oxygen levels, and when I went that route, it said that I did not have sleep apnea or other sleep problems. I have since learned that the rental machine is not the route to go. Quite often the people who are trained to read the results are not trained well enough, or the machine doesn't take enough readings. After I went that route, I was sent to a sleep clinic run by a psychiatrist who specialises in sleep problems and did the overnight sleep in that clinic with wires taped all over the place on me. When I woke up, I actually thought that I had the best sleep I'd had in years....until I got the results. I had no idea that I had severe sleep problems. The test revealed that I never go into a deep REM sleep at all. That I woke up during the night for over 100 brief intervals, and also that I have sleep apnea, and the most disruptive sleep he'd seen in years. Because my sleep is interrupted so often, I had been having not only multiple sleep walking episodes per night, and symptoms similar to narcolepsy. I had fallen asleep when driving twice one month and was lucky I didn't get into an accident, and when sleep walking, just as I was going to come out of it, my muscles would all relax and I'd fall down. One night I fell down six times. Also, when I don't pace myself and do more in a day than I should or stay up way too late, a couple of times when I was awake and doing household chores, etc, for a full day I kept dozing off while doing something and started sleep walking when I never went to sleep. I closed my eyes and washed my face feeling wide awake and when I open my eyes felt confused as to what room I was in until I looked around.
I used to sleep walk as a child and stopped at around age 16, and then didn't sleep walk again until I was 54 years old and developed fibromyalgia which my doctor says a person needs 10 to 12 hours of good quality sleep a night to manage fibromyalgia.
I really feel that not getting enough sleep, or poor quality sleep, is the cause of a huge number of people's poor immune systems and that everyone who has fibromyalgia, irritable bowel syndrome, chronic fatigue, or just daytime sleepiness, should have an overnight sleep study done by a specialist if their blood tests do not show anemia, infections, or low thyroid problems.
If there is a fibromyalgia support group in your area, or one for chronic fatigue, you should think about attending and while there ask around and find out what doctors are in your area that do fibromyalgia dianosis, or specialise in sleep disorders because that specialist would automatically have to do the testing required to see if you have an illness or aq sleep disorder. Don't give up and accept your present quality of life, one needs to be proactive when their health is concerned to improve.

 
Old 08-16-2012, 10:01 PM   #11
Junior Member
(male)
 
Join Date: Jul 2009
Posts: 49
August59 HB User
Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

I was finally diagnosed with narcolepsy after my 4th sleep study which included the Multiple Sleep Latency Test (or somtimes called Nap Test). You start this test in the morning and go through a cycle of nap, wake up, stay up for 1.5 hours and back to bed for 30 minutes. They repeat this cycle 4 times and they measure how fast you fall asleep each time and if you make it to REM sleep.

I had one nap where I feel asleep in 17 seconds and entered REM sleep in 3 minutes. None of my sleep onset were over a minute.

Right after lunch and was watching TV the technician observed sleepin while sitting up, but I thought I still had food as kept raising my hand to my mouth and taking a bite. Of course she woke me up after about 20 seconds of this so it wouldn't mess my test up.

Even on my night time sleep studies (PST) I never have gotten any Stage 3 or 4 sleep. Except for one time where I was taking Xyrem and I still only got 9 mins. of deep sleep.

This has been going on for 9 years and it has taken it's toll on me.

 
Old 08-20-2012, 07:30 AM   #12
Newbie
(female)
 
dzeldaz's Avatar
 
Join Date: Oct 2011
Location: Not NYC, NY
Posts: 4
dzeldaz HB User
Re: HELP! Chronic Fatigue Syndrome or Narcolepsy - At my wits end

I was diagnosed with Narcolepsy and also have ADD. I found research that showed similar sleep issues to narcolepsy as symptoms of ADD. I took another sleep test and the Narcolepsy diagnosis was reversed. If you have ADD or think you might, please do some research and get a very good sleep doc. Mine is great. I am no longer on expensive medication and put much difficult effort into my sleep habits to retrain my circadian rhythm. Life is much better now. I wish you good luck.
__________________
Dzeldaz

 
Closed Thread

Tags
cfs, chronic fatigue, chronic fatigue syndrome, narcolepsy



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



CFIDS (3), sleepykitty44 (3), paulapage1980 (3), wigs123 (3), Brodie179 (3), ladybud (3), mare50 (3), RickinOH (3), neveragain444 (2), mads12 (2)

Site Wide Totals

teteri66 (1164), MSJayhawk (999), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (667), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 04:56 AM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!