Chronic Fatigue Syndrome Community
Some things that helped me - Part 1
About This Community:

Chronic fatigue syndrome (CFS) is a disorder that causes extreme fatigue over extended periods of time which persists after rest and limits one’s ability to conduct ordinary daily activities. Discuss topics including causes, exams and tests for CFS, treatments and how to live with CFS.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Some things that helped me - Part 1

Hello,

I suffered from what I thought was chronic fatigue syndrome (CFS) and fibromyalgia (FM) for 9.5 years.  Below is a list of things that have helped me.  I wanted to pass them along in hopes that they may help someone else.  I am not a medical practitioner.  Always consult a physician before starting/stopping any medication, etc.

How It Started:
On Thursday, Sept. 27th, 2001, I went to bed feeling fine.  The next morning, Friday, I woke up feeling like I hadn't slept.  No matter how I tried, I could not get going.  I went to bed very early that night and slept for 14-ish hours.  The same thing happened the next morning.  I awoke feeling like I hadn't slept.  Later I learned the technical term for this is non-restorative sleep.  This continued day after day.  I was able to push through it but after three weeks I became very concerned and went and saw my doctor.  He said I probably have a virus (mononucleosis) and it will eventually pass.  He was wrong and it never did go away.  It got worse and I developed other symptoms.  From my research I learned that it can be common for CFS/FM to have "sudden onset" after a traumatic experience or illness.  

My Symptoms:
Here are some of the symptoms I had in no particular order (or maybe what bothered me most):
1) Non-restorative sleep.  I would sleep and sleep and sleep yet never feel rested.  This was not only a physical tiredness but a mental and emotional tiredness.
2) Fatigue and post-exertion malaise.  I was beyond exhausted.  Everything was an effort.  I did not bounce back after any kind of physical activity.  I couldn't even mow my own lawn.  I did only what I had to do like pay bills and work.
3) Insomnia.  It was terrible.  I was dead tired and could not fall asleep and, when I did fall asleep, it was hard staying asleep.  The slightest noise would wake me up.
4) Pain (FM).  I hurt all over all the time.  Eventually this started to steal the joy from every moment.  It felt like my muscles would clench uncontrollably especially when I would sleep.  I got a mouth guard because I was grinding my teeth.  I had to get both a top and bottom piece because I was slowly wearing through the top guard.  It was pricey, $300, but better than fixing cracked teeth.
5) Brain fog.  It was hard to think.  I felt drunk most of the time.  I wasn't able to read or learn anything new.
6) Static in the brain.  This is very hard to describe.  The only analogy I have been able to come up with is it's like listening to an AM radio station with lots of static.  My brain was working but there was lots of interference.  To this day I still have trouble listening to music.  It just doesn't sound right.
7) Sensitivity to noises.  The tiniest noise would bother me.  My neighbor had dogs that would bark all day and it drove me insane.  
8) Sensitivity to smells.  Certain scents, especially perfumes and the like, made me feel dizzy and sick.
9) Sensitivity to touch.  I didn't like being touched.  I had to stop wearing jewelry (e.g. watch, ring, necklace).
10) My vision started going black-and-white-ish.  I saw colors but they looked dull.
11) Intolerance to cold.  I was always freezing even when I was in bed with the covers piled high and sweating.
12) Irritable bowel syndrome (IBS).  That's a euphemism for gas (both ends), bloating and loose, water stool.  Worse, I always had this pain in my gut.  Eating would make it worse.  Sometimes I would be starving but I wouldn't eat because it would hurt so bad.  When I did eat, food would travel through my in 5-6 hours.
13) Memory problems.  It was hard to remember things.
14) Irritability.
15) Anxiety.
16) Depression but, and I want to make this clear, it was a symptom not the source problem.  The doctors always wanted to give me anti-depressants.  I always said no but my wife kept saying I should try them.  I tried three different kinds and I will never take an SSRI again.  I made my wife promise to never, ever let the doctors give me one even if my life depended on it.  The first one, Effexor, was okay.  I had lots of side effects all pretty minor except the big one.  My equipment stopped working.  That was unacceptable.  I tried Welbutrin (sp?) next.  That made me feel like I wanted to fight with everyone so I stopped that pretty quickly.  The last one I tried was when I was feeling really bad.  I took symbalta.  I started having spasms and I lost voluntary motor control of my limbs.  It happened for approximately five minutes every three hours over a span of about 18 hours.  I figured it was because of the time release capsules.  It was an extremely traumatic experience when I was at one of my lowest points.  Never, ever again will I take SSRIs.  
17) There are more symptoms but it's hard to remember them all and I try not to think back too much less the darkness return (like how Beren would not speak of his passage through the girdle of Melian).

Things That Helped Me:
Here is a list of things that helped me.  There are in order of most significant to least.
1) Submit to God.  I always had plans for what I was going to do with *my* life.  I got a B.S. in Computer Science and got a job programming.  I planned to become a Chief Information Officer (CIO) and/or start my own company.  I would acquire all the material wealth I would need to be comfortable including a nice house, car, etc.  I would find a good wife.  Raise a family. Maybe start a company.  After I had established *my* kingdom I would then turn towards God.  

I was/am Christian and I have always had pretty strong faith.  Little did I realize how much my faith would be tested by my illness.  As my illness progressed I was able to do less and less.  Even fun things became a chore.  My life was stripped away from me a little piece at a time.  Towards the end I had only my job (teaching programming at a local community college) and my wife.  Everything else was gone.  

I have discovered that if I hurt bad enough for long enough that I have a breaking point.  I found that breaking point.  Had it not been for my faith and the grace of God I would have died.  I was broken not once but about three different times (yes, I'm very stubborn).  I started saying things like, "Lord, I give up" and "Lord, what do I do?", "Lord, take this burden from me or make it all stop, PLEASE."

I was flipping through the TV channels one day and I came across Joyce Meyer.  I listened to her for a while and what she said resonated with me.  I continued to watch her because I learned something helpful every time I saw her show.  After a month or two I saw a show on submission.  Something clicked.  I started trying to submit to God.  I began to *voluntarily* let go of all the things *I* wanted to do.  After practicing this for a month or two I started to find the other items on this list.  For me, the more I have learned to trust and rely on God, the better my life has become and not just in a physical sense.  If I had to look back, I would say God used my illness to wake me up.  I'm not saying He caused it but I think He used it as a teaching tool.  Most importantly, it was His grace that let me find the other items on this list.  At the end I'll explain the computer search techniques I used.

2) Hypothyroidism Type 2 (HT2).  Most of the medical community doesn't know about HT2.  They know only about plain hypothyroidism which Dr. Mark Starr calls Hypothyroidism Type 1 (HT1).  HT1 is where your thyroid gland produces little or no hormone.  This can easily be detected by a blood test.  I have had the blood test at least three times and my results where always "normal."  
Related Discussions
9 Comments Post a Comment
Blank
1915216_tn?1328425108
Hi,
I have all the same symptoms you had, with the exception of IBS and my vision is often blurry but not black and white. I wanted to clarify: Have many of your symptoms cleared up? I mean after you let go the the things you wanted to do?
These symptoms are hard to believe as I experience them. I try to be positive and surge forward with the things "I" want to do. I mean I have plans, like many people - to get married, have a career, save for retirement, have children, own a home, etc. And then there's just major unwanted interference with this illness, the pain, the unrelenting symptoms. So I am wondering after you practiced 'submitting to God', letting go of the things *I* wanted to do, are you now feeling better with less physical symptoms? Or, does the practice allow for some minor relief and alleviated symptoms, in your experience? I tried it before, but not consistently as my stamina and focus is somehow off lately.
I have been praying for help for years, and I wonder if I will ever catch a break or feel a response. Well, thanks for your tips, they seem helpful and I will give it a shot.
Best regards,
Jen
Blank
Avatar_m_tn
Hello Jen,

Little bits of my life got striped away with each passing month and year.  At first I was very stubborn and fought very hard.  As time went by I got worn down.  Eventually I reached a point where everything was an effort and I had little or no fight left in me.  In some ways that was good.  I realized I had been carrying around a lot of anger and, believe it or not, it takes energy to be angry.  So I worked really hard on letting go of my anger.  I let go of so much.  I went through all my memories of where I was harboring someone ill will and I forgave them.  I also forgave myself for how I behaved in a lot of situations.  Nothing super big but every little bit helped.  

Somewhere around 7 years into my illness I realized that so much of what I wanted to do wasn't going to happen.  The old me had died.  I was very sad for a while.   Eventually, with God's grace, I rallied my spirits and kept fighting the good fight.

I always felt like something had attacked me like how you feel when you get sick.  I knew it wasn't me and I knew there had to be a cure.  I started praying a lot more but in a different way.  Instead of just reciting the Lord's Pray mechanically I started really paying attention to what I was saying.  I also started having conversations with God (mostly one-side with me doing the talking).  Eventually I started to submit and listen more.  It was two-ish months afterwards that when I discovered HT2.

After being on desiccated thyroid for almost a year now I can say I am much better.  I still have most of my symptoms but they aren't nearly as bad.  I read it takes 12-18 months to fully recover and I still see improvement almost every day.  I'm not super full of energy but I can be social and have fun and do things around the house.

I still have some sort of infection in my sinuses that's causing me trouble.  I'm flushing with saline and that's seems to help.

Did that answer your questions?  

Just curious, are you cold or heat intolerant?  Have you taken your basal temp?

Sincerely,
Lord Ugh


Blank
773755_tn?1328123377
totally relate.
unusual for a male to get this illness.
i also got completely stripped of anything in life that i valued or lived for or wanted to do.
i agree that letting go and accepting circumstance and that healing from god are the most helpful things in order to live with severe illness and have a chance of recovering.
some people say to get up and fight but this is complete folly in this circumstance. this is a thing to stay down in, and wait.
bla bla.
i also had anger issues i didn't know i had.
and a thyroid condition which seems to have settled.
cheerio n take care
Blank
Avatar_f_tn
Since Jan. of 2004, I have had similar symptoms to yours.  My second child had just been born in July of 2003.  During those years, I also was suffering through a bad relationship with my husband.  He was verbally abusive to me and later found out that he was diagnosed as being bipolar.  I went through a divorce in 2005/2006.  It was finalized in July of 2006.  Ever since all af these traumatic events have happened to me, my body has never been the same.  I have constant lightheadedness, tingliness,brain fog, memory problems, extreme fatigue, tremors, headaches, upset stomach, sensitive to noise, and certain smells.  During flare-ups these symptoms become more intense.  It becomes really frustrating because nobody really seems  to understands how I truly feel. Let me know if you have similar feelings and symptoms.
Blank
Avatar_m_tn
I too have many of these same symptoms it seems.  I am heat intolerant for sure.  Let me state a few things first.  I am a 31 y.o. male and am about 200 lbs over weight.  I too worked hard in college earning my civil engineering degree(even while I was feeling this way as described by you).  I don't have insurance and can't afford a doctors visit or hospital visit either, so just "living" with it is all I can do.  I don't have all the symptoms as you described, but most of them I do.  I stay very tired all the time!!!  Things I use to do with ease have become an overbearing chore.  I use to be a fat kid growing up but lost most all of my weight from 372 lbs (@21yoa) to 200 lbs by the time I was 23-24 yoa with proper food portions and constantly staying active (I never changed what I ate just how much I ate of it and increased my activity level).  I maintained between 180-250 for several years till I was about 29-30.  Now as I feel these symptoms have grown more and more a hindrance to my desire and ability to want to do anything I am now well over 400lbs.  I admit that I have never and will never eat the most healthy diet (that will never change for me), but I have lost any motivation and will to want to get up and do more.  I ache in my legs and feet ALL THE TIME and not from my weight either.  My feet ACH something fierce as I have never felt befor4- deep constant pain even if I am not on my feet at work or I am just sitting in my easy chair at home.  I have never had any thing like this before and I keep blowing it off.  I have a very hard time going to sleep at night sometimes staying up all night long for no apparent reason, just not able to sleep though I am VERY tired.  Then I experience the opposite of that coin as well - when I do get good rest, I wake up feeling EXHAUSTED/unrested and can sometimes go right back to sleep for another 5 hours or so for the cycle to just repeat itself all over again.  I am lost and confused over it and haven't said a word of it to anyone, not even family (thought they are aware of my significant weight gain and inactivity they don't know what is behind it all).  

Furthermore, I too am saved and have confidence in the Lord.  I put my full trust and faith in Him, but I have never felt a burden to pray to Him about medical issues even now.  I don't really care what happens as I know my name is written in the Lambs book of life and to be absent of the body is to be present with the Lord.  I just don't worry about any medical problems.  Other than curiosity as to what is going on with me, I NEVER go to the doctor or hospital even if I was a millionaire.  Anyway (that is that stubborn thing in us men), I have two other issues I am researching when I stumbled across the link to something called "chronic fatigue syndrome" and thought maybe that is what I have and would explain everything that's happening to me these past 2 years or so (I am about to turn 32 in October).  Sure enough what I have read so far it seems I have this and possibly fibro. but not sure.  I just thought I could post and it make me feel a little better or get your thoughts/opinions, lol...  Blessings!!!
Blank
Avatar_m_tn
I should have mentioned that this is all new to me and I have not been diagnosed with anything.  The only thing I have ever had medically wrong with me is Asthma.
Blank
Avatar_m_tn
coolbluedude,

Make sure you read part 2 and part 3 of my posts.  My original post was too long and I had to break it into pieces.  

http://www.medhelp.org/posts/Chronic-Fatigue-Syndrome/Some-things-that-helped-me---Part-2/show/1654515#post_7534913
http://www.medhelp.org/posts/Chronic-Fatigue-Syndrome/Some-things-that-helped-me---Part-3/show/1654516#post_7534916

Yes, I, too, thought I had chronic fatigue syndrome (CFS) and fibromyalgia (FM).  Those are just names they give to a collection of symptoms.  There's not actual test for either of those.  It turns out I am hypothyroid type 2 (HT2).

If you still have questions you can post or PM me.

God wants to be part of everything in your life :)  You never burden Him by asking for anything.  He loves to help you so definitely pray for healing and believe that it will happen.  I wouldn't have been able to make it without my faith and Him.

Two easy tests you can do are taking your basal (resting) temperature and checking to see if you have myxedema.

Sincerely,
Lord Ugh

Blank
Avatar_m_tn
I posted this on your third page of this post and thought I should post it here as well.  I did read your entire post LordUgh and was captivated by your findings till I started doing my own research.  I do believe you received healing to the degree you are at now.  That is awesome.  I just want to re-post this on your first page as it seems to be the only one people are commenting on.

Well, I am not doubting your success with the treatment you have chosen for yourself.  I would, however, like to offer some interesting information for consideration to those who (like myself) are interested in your findings.

I did some researching on the author of the article you referred to on Curezone, a Dr. Hulda Clark.  I found many supporting evidence that she is/was a quack!  I would suggest all who are interested to google her name and find out for yourselves.  I am not against things that help people get better even if it is outside of "normal" practice of medicine.  I just want others to know who they are taking advice from.  I am not here to slander people's reputation so I refuse to go into details.  Just offer you a reminder to do your own research and come to your own conclusions.  I suggest offering your findings to your doctor(s) for their professional opinion(s) before starting a regimen.  

There is also another "quack" on youtube who offers his "expert" advice as though he is a doctor when even on his own website he offers no credentials, experience, or education to support his claims.

Please do your own research and seek the advice of a professional you TRUST to give you direction as to what is beneficial and what is not.  

Lord Ugh please feel free to shoot me an PM or respond here if you have some important information that I can read to help me (and others) to further consider this form of treatment.  As I said before, I don't doubt your success with the liver flush and all, I just don't trust the source where that came from.  I haven't looked further into HT2 so I can't offer much on that or have formed an opinion on it yet, neither have I taken the tests you suggest.  I will try those tests as soon as I can.  

I honestly was very interested in doing the flush like you did till I did my research.  I am not going to trust it at this time.  Please offer more to substantiate the conclusions you too have experienced.  Has anyone else on this forum experienced anything like this?  Have you communicated with any of the professionals on here to get them to offer their opinions?  I would like to see more like yourself with proof of their claims before I could ever commit to a liver flush or anything else Dr. Hulda Clark offers.  

Thank you for the personal encouragement and I do pray (probably not as often as God want's me to, but who does?) regularly.  
Blank
Avatar_m_tn
BTW, thanks and God Bless!
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Chronic Fatigue Syndrome Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
Top General Health Answerers
1530171_tn?1362547225
Blank
TheLightSeeker
London, ON