Anyone have CFS?

[Choupy]

Hi all!
I'm new here. Thought I'd ask if anyone else struggles with Chronic Fatigue Syndrome. It's pretty debilitating for me and I would love to chat with other Christians who can relate. My major symptoms are brain fog and weakness...very hard to keep up with daily living and raising three young children!

I am now seeing a CFS specialist at Holtorf Medical Group in Torrance,CA. So far, no results (taking T3, cortisol, DHEA, testosterone, progesterone and many supplements). I am also being treated for sleep apnea with an oral appliance (just started so I know that will take some time to see results).

My next step is to look into the mind-body connection (thru a Christian perspective). I posted on Book Club but thought I'd mention here, too, the book I'm going to start called "Who Switched off My Brain?" by Dr. Caroline Leaf. It gets into how toxic experiences/thoughts and lack of forgiveness can create/open the door to illness. She distinguishes between fear-based and faith-based thoughts and describes how our choice can affect our health. Anyone read/reading it and wish to discuss it? Either way, I'd love to hear from others struggling w/ CFS.

Blessings,
Choupy

 

[sheriefx]

I have just recently begun to look into the cause of symptoms that my dh has. He has been to the Dr but no luck with a diagnosis yet. The more I read, the more I believe he has CFS. It is getting worse (in my opinion) How were you first diagnosed? I may try to find a specialist that he can see.

 

[MrShine]

Hi all!
I'm new here. Thought I'd ask if anyone else struggles with Chronic Fatigue Syndrome. It's pretty debilitating for me and I would love to chat with other Christians who can relate. My major symptoms are brain fog and weakness...very hard to keep up with daily living and raising three young children!

I am now seeing a CFS specialist at Holtorf Medical Group in Torrance,CA. So far, no results (taking T3, cortisol, DHEA, testosterone, progesterone and many supplements). I am also being treated for sleep apnea with an oral appliance (just started so I know that will take some time to see results).

My next step is to look into the mind-body connection (thru a Christian perspective). I posted on Book Club but thought I'd mention here, too, the book I'm going to start called "Who Switched off My Brain?" by Dr. Caroline Leaf. It gets into how toxic experiences/thoughts and lack of forgiveness can create/open the door to illness. She distinguishes between fear-based and faith-based thoughts and describes how our choice can affect our health. Anyone read/reading it and wish to discuss it? Either way, I'd love to hear from others struggling w/ CFS.

Blessings,
Choupy

Hello Choupy,

I am new to this Forum and came accross this post the other day.

I am 45 years of age and when I was 19 something happened that entirely changed my life. I awoke during a camping trip at one of our State beaches in the morning with the most bizzare feeling of dis-oriented , drowsy and had these little twitches. I had the most powerful fatigue that I can ever imagine.

To make a long story short- From then unto now has been the most longest lesson I have ever been through. I have been diagnosed with a million different things but never fully tested. I have been called every name in the phsycological books possible it seems. Anything with chronic fatigue as being a main symptom boggles the doctors or even worse-puts many of them in a situation they would rather not deal with.

If I look back I see that It was God drawing my towards Him out of the lost life that I was in even thought it seemed to going in a good direction. Only a couple years ago when I finally truthfully and sincerely accept Jesus Christ as My Savior did I finally feel a huge burden be lifted off. I finally surrendured unto the Lord. Even thoughh I still have a sckness with many symptoms-some getting worse I still am thankful that this happened even though I would never wish it onto any others.

I will write more later if you would like but I wanted to share abit of my story with you and others- I dont really have people to share this part of my life with as most dont care, understand or dont believe-

Keep strong in Jesus Name-

 

[dudewithcfs]

hi choupy. i have cfs and fibro. its been totally devastating. pain, faituge, achiness all over, tremors, muscle twitching etc. i have had every symptom know to man. irritable bowel, stomach problems, heart palps and the list goes on. it affects every system in my body. i am currently following the Marshall Protocol minus the Benicar in an attempt to recover. I have found that little else helps with this condition.

 

[Andrew B.]

Hi Choupy,

I have CFS. It started in late 2005. It feels like the worst case of flu.

How long have you been going to Holtorf?

 

[Booko]

I did have CFS, with the full list of symptoms, and it took me five years to figure it out, but the underlying cause was food allergies, most especially corn allergy. If you think you know how pervasive corn is in our lives, believe me, uh...really you don't.

I posted something in the Allergies subforum about the treatments I've been getting since last fall for the allergies. (www.allergytx.com) I'm still a *little* reactive to corn and dairy, but tonight I had popcorn for a snack. Also a major factor for me was metal toxicity. Well, I did grow up within a mile of a Superfund site, so no surprise there.

A few months ago just smelling the fumes from making popcorn would've taken me out for a month, and possibly sent me to the ER with sky high BP and a raging days long migraine nothing could touch. I'm fine.

My best friend has been struggling with CFS as well, but has a lot more going on sensitivity wise than I have and is still chipping away at it. In addition she was an ER nurse for years and has gone through a detox regimen for a host of viruses she's been exposed to. And the other part for her was metal toxicity, mostly mercury and aluminum.

The reason M.D.s have such a tough time with CFS and consider it idiopathic (i.e. they have no idea what the cause is) is that the causes are a) multiple and b) different for different people. What I've found has mainly been from "alternative" healthcare, most particularly kinesiology and naturopathy.

Whatever else is going on, let me reassure you from my own experience:

Yes you CAN lick this!

And NO it is not "in your head."

No, you are NOT lazy!

You are simply chronically ill. If you had cancer everyone around you would understand. But you don't, and well meaning people say things like, "But you look healthy!" when you wonder if you'll be able to get showered today.

This condition is not known in undeveloped countries, which makes one wonder: Why not?

Oh, maybe because they don't ingest poison daily on the level we do. They eat food the way God designed it for us, just for starters. And they are not surrounded by environmental toxins in their daily environment as we are. No organohalenes, no environmental estrogens, no toxic fumes from the furniture and carpets, no pesticides and "preservatives."

 

[LuvTeal]

Hi all,

I used to have Chronic Fatigue Syndrome and FM & Myofacial Pain Syndrome and more. Onset was 03 January 1975. The true name has been fraudulently covered by the CDC.
The name of the disease was first described in 1954, and has been classified at G93.3
by the World Health Organisation since 1969. For those severely affected, and not just depressed, the name of this disease is in reality Myalgic Encephalomyelitis which has similar symptoms, but is a much more serious disease than that described as CFS. I now have congestive heart failure. Aerobic exercize or too much exercize actually kills our DNA. ME is often preceded by exposure to toxic chemicals, and a onset is a viral source
that our immune systems fail to handle. In my case, I have coxsackie virus B-2 & B-4.
Now an retrovirus XMRV has been discovered. The CDC is trying to suppress this evidence as they have all else. Money is the bottom line. See The Hummingbird's Foundation for Myalgic Encephalomyelitis, Byron Hyde's Nightengale Foundation, and the trailers for the upcoming documentary on the cover-up, "What about ME?" Never see
any other physician first by an infectious disease doctor. The others have had a veil over their eyes and don't understand what ME truly is.

My infectious disease doctor is Dr. John K. Chia of ID MED, also in Torrance, CA. His
son had ME. Dr. Chia believes like UK doctors rather than the CFS baloney.

Best to you all,

LuvTeal

 

[LuvTeal]

Hi all,

I used to have Chronic Fatigue Syndrome and FM & Myofacial Pain Syndrome and more. Onset was 03 January 1975. The true name has been fraudulently covered by the CDC. The name of the disease was first described in 1954, and has been classified at G93.3 by the World Health Organisation since 1969. For those severely affected, and not just depressed, the name of this disease is in reality Myalgic Encephalomyelitis which has similar symptoms, but is a much more serious disease than that described as CFS. I now have congestive heart failure. Others die of cancer or kidney failure. Aerobic exercize or too much exercize actually kills our DNA. ME is often preceded by exposure to toxic chemicals, and a onset is a viral source that our immune systems fail to handle. In my case, I have coxsackie virus B-2 & B-4.
Now an retrovirus XMRV has been discovered, the same virus involved with prostate cancer. The CDC is trying to suppress this evidence as they have
all else. Money is the bottom line.

See The Hummingbird's Foundation for Myalgic Encephalomyelitis, Byron Hyde's Nightengale Foundation, and the trailers for the upcoming documentary on the cover-up, "What about ME?" Never see any other physician first except an infectious disease doctor. The others have had a CDC/psychiatric veil over their eyes and don't understand what ME truly is. I used to see psychiatrists, but since I was diagnosed with ME, they say they are not qualified to treat me. I don't hear the you are just fatigued abuse anymore.

My infectious disease doctor is Dr. John K. Chia of ID MED, also in Torrance, CA. His son had ME. Dr. Chia believes like UK doctors rather than the "CFS" baloney.

Best to you all,

LuvTeal

 

[ScottsWife]

I have been diagnosed with Fibromyalgia for 2 years...but I'm positive that I also have Chronic Fatigue Syndrome. This week I can barely function! and I have a toddler to keep up with!...and a farm. I have already had to lay down twice today. i've been twitching, i am so exhausted like i was hit by a Mack truck. my neck is killing me and my jaw feels like its been clenching, even though it has not been. I'm tired of feeling like this. I've been reading about adrenal problems that regular MD's don't address and I'm hoping that I can find some help this way. I'm on so much medicine for depression and fibro, that i cant believe that nothing is helping.

 

[Andrew B.]

I thought some of you might find this interesting.

The first link is an hour-long documentary about CFS made in 1993. http://vimeo.com/9714250

The second link is a 12 minute news special that was made a few years later. It adds some information not found in the first one.

http://vimeo.com/13048135


Sadly, not much has changed since then.

 

[LucyGoosey]

I have fibro with a lot of fatigue due to adrenal fatigue. I've had it for 28 years now but have pretty much gone into remission after going off meds which were making my symptoms worse, cleaning up my diet--lots of food allergies and using amino acids to regulate my brain chemistry.

A wonderful book that really helped me is Treating and Beating CFS and Fibro by Dr. Rodger Murphree. He's a chiropractor who uses orthomolecular medicine to give the body what it needs to function in the form of vitamins, minerals, amino acids and other nutrients. He believes that fibro and CFS are sort of a type of low-grade system failure where various organ systems don't function properly, but aren't malfunctioning to such a degree that the average doctor picks up on it leaving us looking like fools when we tell them we don't feel good in spite of what they consider to be normal test results. I think this is the best explanation I've come across as I'm pretty much in remission these days other than the fatigue.

 

[Endzone]

Yes, I have chronic fatigue, but not as bad as a lot of people do. I've read where some folks have to stay in in bed 18 hours/day, and they don't even have enough energy to go take a shower each day. My choronic fatigue works like this. I have to sleep at least 8 hours/night and sometimes 9. Then when I wake up I still feel kind of tired. I have to take a 1/2 break at work WHEN I'm working. I'm not working right now. I can't go more than 14 hours straight before I absolutely will crash and barely able to crawl into bed with my clothes on. And some days are better than others.

I got it from a prostitute in Vancouver, British Columbia about 2 or 3 years ago. I know that may be shocking to some of you. You may not even think that I am a Christian, but I am. I have just had this addiction in my life for so long. So, I believe it is some kind of virus or bacteria--some kind of pathogen.

 

[The Julikenz]

I had really bad CFS when I first joined here at CF, in 2004. It got worse over 2005 and 2006, but I eventually recovered around late 2007. I had an additional diagnosis of 'Post Viral Syndrome' and also met 3/4 a criteria for lupus - though they said that while it wasn't lupus (praise God), that there may be a later emerging autoimmune disease.

CFS is awful, it completely debilitates perfectly able and mentally sound people. I nearly jumped off an overpass at the height of my illness, because I was so frustrated with life and my lack of control over my gifts, talents, consciousness (not to be confused with 'conscience'). I wish all of you lots of strength, faith and hope - because people do recover, it is possible.

 

[RuthD]

My doc told me he thinks I have this. I am trying a new healthstyle plan that is supposed to give me more energy.

 

[Colleen1]

I empathize with you all. I have been on disability and have struggled with illness and getting the proper help for over a decade. A few years ago I was diagnosed with Chronic Fatigue Syndrome, Myofascial Pain Syndrome and the last two specialists I saw also suspect I have Fibromyalgia. This has been difficult because treatment becomes much more complicated. One treatment for one illness can cause a 'flare up' with a different illness. On top of it all, I experience very bad side effects from many different medications. Some of us have chemical sensitivities.

Life has been easier to deal with now since proper diagnosis because now I can look into and get appropriate treatments. I also have much better doctors now. God has allowed this in my life but I have seen him work what I consider miracles along the way. Miracles concerning health care providers, disability benefits and some other pretty serious issues. I may have to manage this lot in life but I know He's by my side. Even when I feel lonely and isolated, my other life experiences have taught me He is there. If I bother to look at the situation I find evidence of His presence and His hand intervening in the situation whatever the problems may be. My entire body is in pain every day, at times the pain is rather severe and incompascitating (not to mention all the other symptoms). I received a message the other day with just the right words. I knew God had a part in it. It was like getting a big warm healing hug. There are those of us out there that understand and care. God really does care. A saying that encourages me is, "God cares about the big things, the small things and all the things in your life.". Thanks for letting me share. This forum has helped and I hope this is encouraging.

By the way I'm glad you guys understand that not being healed doesn't mean you have less faith or make any one a lesser christian. In my opinion it takes a whole lot of faith and trust in God to live with chronic illness and pain day after day and with people who can be rather hurtful. Take care!

 

[Katarinea]

Hi, everyone. I'm posting here because I believe I have chronic fatigue syndrome, though I am yet undiagnosed. I would have gone to a doctor long ago, but I'm a college student and not monetarily gifted. I plan on going very soon, because it's getting to the point where it seriously impairs life. At this point, I'm mostly self-diagnosed. . .

I started suspecting it midway through my senior year of high school, but it didn't really become a problem till my second semester of college. Now I'm in my fourth semester, and it's becoming harder to deal with. I'm a morning person, but it's so hard to wake up, and some mornings I literally cannot get out of bed. I slept from 12 to 11:30 last week, sleeping through two of my classes, and I was still bone tired. In addition, being so tired constantly is beginning to put my emotions on a hair trigger; I'm normally very easy-going. There's not many other things that this could be. . . I'm so frustrated with this! I know God's got a reason for it, but it's so hard to see, and right now I could just cry because of how tired I am. The worst part is when people discount it as "all in my head". It's not!

 

[Colleen1]

Hi Katarinea (didn't mean this message to be so long). I'm glad you left a message. Being fatigued like that makes life difficult especially when people don't understand and you don't have support. I empathize greatly. That's why it was so much better for me when I found doctors who really understood and cared about providing quality care. It also, in some ways, made my personal life easier because I felt validated and people in my environment who may have suggested "it was all in my head" now had less credibility. That diagnosis and validation went a long way in helping me just feel better about myself. I am very glad to be able to be supportive and validate your feelings. I have come across others who have felt the same as us. We are not alone. I am convinced God is with me in my life struggles even at the times I feel alone. I have had a lot of experiences in my life and have seen His hand in a lot of big things and small things which convinces me and reminds me of His presence in my life. When I'm having a difficult time feeling His presence I do something or go some where that makes me feel close to God. I feel closest to God when I'm around nature, singing and reading certain parts of the Bible or thinking about certain people who have inspired me like Moses, Peter, Job or the woman at the well, etc. Or remembering those times God really came through for me because it's easy for me to forget those things when I'm in the middle of grief. I also know what it feels like to hesitate seeking professional help from doctors, etc. or talking to anyone, for that matter, because of being afraid they will be invalidating. I tried and tried and tried and tried again and again, etc. for over a decade. The thought of seeing or talking to another person who didn't understand was frightening for me but eventually God provided in His time. I was also blessed that God helped me see why it took so long and that the the time He picked was the right time. If you haven't guessed I like asking why, how, etc. Being able to understand the things in my life makes me feel much more secure so I'm happy God has shown me some of the whys. In some ways it's like Joseph and his problems before he gets to see that God meant it for good regardless of what others meant it to be. There is a song written by Stuart Townend called "In Christ Alone," with lyrics that always seems to be powerfully healing & validating for me when I feel invalidated & hurt in regards to my journey or health issues, etc. The songs lyrics are, "In Christ(God) alone my hope is found. He is my light, my strength, my song. This cornerstone, this solid ground firm through the fiercest drought and storm. What heights of love, what depths of peace when fears are stilled and striving cease. My comforter, my all-in-all here in the love of Christ I stand... No guilt in life no fear in death. This is the power of Christ in me. From life's first cry to final breath Jesus commands my destiny. No power of hell no scheme of man, can ever pluck me from His hand; till He returns or calls me home, here in the power of Christ(God) I'll stand." For me these words say a lot. God gives us free will to choose relationship with Him and He wants relationship with us. He doesn't give other people power over that; thanks be to God!!!!!!!! People are not God and some times I need to remind myself of that especially when I feel let down by christians. I'm not meaning to give you extra lengthy stuff to read especially when you're going to school and have enough 'on your plate' but I so want you and other people going through these struggles to know that you are loved. Take cake!