IS THIS WHAT CFS-IS LIKE?

Wotan

Veteran Member

Joined : Jun 2005

Posts : 530

Posted 9/28/2008 4:48 PM (GMT -7)

Hello- my dear friens at HW. This is "Robert", from the other "forums" (the guy w lots of irregular heartbeats & anxiety...etc.

Anyway- For the last year or so....(especially the last 6 months)- I'm always tired! Fatigued...Some nights..I don't sleep well- so, when i awaken tired..& "headachy"....I understand it ! But--even on nights I sleep well--it's the same thing.

Around 11 AM..or so...feeling tired...sleepy...no energy. And...a dull...headache !

I've been to Drs- (Family Dr...& specialists)--My "specialists"...are my cardiologist---( I have Mitral Valve Prolapse)-- & told him about this...just last week--! I ASKED for a blood test--

I had my blood test (CBC & "Complete Metabolic"....I thought maybe I was diabetic)-

All my blood work was normal. I saw my neurologist ( I see her every 6 months....for my eye spasm...she gives me "botox" shots)-- & told her about it.

She gave me a "general" neurological exam....& looked at my blood tests. Said.."Everything looked good".

I'm wondering if.."depression"...can cause this ! (I've been suffering from depression--since 2001--from a personal problem...was in therapy..for 2 yrs)---

Anyway---I take meds......25 mg..Tenormin..for my irregular heart beats....10 mg..Valium....a day....Protonix...40 mg....for reflux (I also have Esophogeal spasm)--Lipitor....10 mg....

But--that's it---I also have IBS....aside from my MVP.....& esophageal spasm.

BUT-------------This constant fatigue---lack of energy......& dull headaches (Ohh..i also had an MRI of brain.."normal"...)--- But--do I have "Chronic Fatigue Syndrome"...? (I saw on my cardiologists report...when i paid my deductable....under "Diagnosis"...he wrote "CFS "...!)

BUT---is this a true diagnosis? Or do Drs...just write this when they've ruled out everything else out?

Again...always TIRED...fatigued...no energy..AND...MANY days...headachy!

PLEASE---i ask anyone (hopefully more)---to share with me.....so..I know..I'm not aloned...or losing my mind! Thank you all...so much--any feed back..would be most helpful---Thanks--Robert

jasjas

New Member

Joined : Sep 2008

Posts : 6

Posted 9/28/2008 5:32 PM (GMT -7)

Hi Robert, I have CEBV/CFS. CEBV is chronic epstein barr virus and is the virus that causes MONO. I got MONO a year and never recovered some doctors say it is cebv and some say cfs. The way I describe my fatiuge is completely disableing. I have literally been in bed or on coutch for a year, and I am only 26. If I'm sitting up my head is tilted over or leaned back on the seat because I am so fatiuge I just can't hardly hold it up. I used to think I was tired all of the time but now I know I had no clue. If I go anywhere like to the doctor I can't handle standing in line to check out because I am so fatiuge I have to sit down. It is such a miserable feeling. I also get a low grade fever from time to time but no headache. With my CFS there is no way I could live a normal life at all, no driving, just laying dowd 24/7, no matter how much I sleep I am still so tired. I don't get the headaches though. I was extremely active before this . I worked full time and then got home and went out everyday. Now I am just in my bed. I hope this helps. I really hope you get to feeling better. Also I do know that depression can cause fatiuge but if you are as bad off as me then I don't think it is from depression. Feel free to contact me if you have any questions or want to chat. TTYL

b4k

New Member

Joined : Oct 2008

Posts : 3

Posted 10/4/2008 1:33 PM (GMT -7)

Hi i have had cfs for nearly 3 years now and am only 19. I get the headaches all the time, i had to have a brain scan to check there wasnt any tumors and lukily everything was normal. I have also had many many blood tests over the years and most of the time things look normal apparently. It might be worth just asking your doctor about what he wrote down. Your symptoms do sound to me like cfs but im not a doctor. If you do have CFS then im afraid you just have to live with it as there is no known cure for it at the moment. If you had a bad viral infection around the same time your symptoms started then that can indicate the it is cfs.

Feel free to message me although cant guarantee how much i will be on because im not too well at the moment :P

NewSky

New Member

Joined : Oct 2008

Posts : 5

Posted 10/8/2008 1:57 PM (GMT -7)

Hi Robert...I’m new to these sites, my first posting here. So, hi to everyone else out there in CFS La-La-Land, too. Only started using a computer and the Internet, again, recently. This, after more than 12 yrs of ongoing illness. Back then had to give up my own business as I couldn’t think, function and all the rest of it.

You’re “not alone”...not “losing your mind!” Although I know it can feel that way. I’ve been through the isolation that many of us experience with CFS. That’s where the aloneness and sense of losing one’s mind comes from. I felt like I was living on another planet for so long...and I feel like the world has passed me by because of all the changes in technology etc.

I’m encouraged by all of the ideas and tips for healing that so many people are sharing on this site...and at the ProHealth site. I can’t wait to start applying some of the insights.

Before I forget, Robert...and let’s face it (who can remember much with CFS) I have the irregular heartbeats, too. Not long ago, I read that Hawthorn...a natural herb preparation could help with this. I tried it, and for me, it has been terrific. The brand I mostly use is Medi Herb. It works very well for me when I’m not overstressed. I’m not saying, replace your medication with it. Yet, it may be worthwhile talking to a natural health practitioner or doing your own research.

And to improve the fatigue...I eat lots of dark berries. Anything else I can think of I can add at another time.

I had so many of my symptoms under control until about six months ago. But a major move – new stresses - and letting my dietary-guard down has put me back to where I was many years, ago. I know what I have to do. So, from yesterday I started doing the things I used to do (without medications) that made me feel so much better.

about the “depression”...I think depression is most probably a side-effect of many illnesses. Personally, I can’t believe that an illness (as profound as CFS) can be caused by depression. I mean, if depression caused CFS surely we’d be seeing many more millions of people coming down with this disease.

I hope it encourages you to know that I used to have severe esophageal spasm. It seems time (and perhaps the dietary changes I had made) simply healed it.

Good luck Robert...and all you other CFS warriors, out there! NewSky

Regular Member

Joined : Nov 2008

Posts : 263

Posted 11/22/2008 10:03 PM (GMT -7)

Dav Go...all your posts are trying to sell this product. This is a DISCUSSION FORUM not a marketplace. Thanks.

I have Fibromyalgia, but nothing else!

I take Lyrica 150mg b.i.d.
Tramacet 75 mg for breakthrough pain

Tried amitryptelene 2.5 mg but it made me a zombie!

Alexanderfromdenmark

New Member

Joined : Dec 2008

Posts : 9

Posted 12/24/2008 4:11 PM (GMT -7)

B4k, I didn't get your "you''ll just have to learn to live with it" comment. I'm quite new to the whole thing, but while there perhaps is no known cure, there's plenty of treatments available to those who are willing look for them and have the cash to do so. There's dr. myhill protocol, there's the marshall protocol, there's common sense, Ayurveda, yoga, acupuncture and CBT(for reducing the psychological distress about the whole thing). There's probably much much more. Couldn't thing of anything more depressing than to hear, your going to be fatigued, always! for the rest of your life. Oh and lots of other things too!

run262

New Member

Joined : Dec 2008

Posts : 1

Posted 12/27/2008 6:53 PM (GMT -7)

Hi to everyone. I'm new to this but wanted to share a little of my experience with CFS. I got CFS two years ago. I ran a marathon and a week later couldn't get out of bed. I'm a very active person and went absolutely nuts not being able to do what I wanted and not being able to keep up my level of activity. I became very good at giving myself relapse's. As soon as I'd have a good day I'd over do it with exercise and be back in bed the next day (I'm sure most of you can relate to that).

After progressively getting worse this past summer (due to a stressfull event), a friend mentioned to me that he felt there must be some type of dysfunction in the mitochondria. I didn't have a clue what he was talking about, so I looked up CFS and mitochondria on the internet. I found a ton of information along with a forum similar to this with people talking about The Sinatra Solution. It's a book written by Dr. Stephen Sinatra. I bought the book and read it in two days, it's the best money I've ever spent in my life!! He gives a list of supplements to take for FM and CFS. I started taking them and in less than a week was back to myself. I've been taking...Co enzyme Q10, D-Ribose (my miracle supplement), Magnesium, along with my multivitamin (I don't take the niacin that he recommends). I call this combination my miracle cure.

The first week of taking it I started running 3 miles a day. Four weeks later I'm up to running 6 miles a day, hiking for two to three hours on the weekends, lifing weights 5 days a week and I'm back to work. I do go to bed early, and I started taking melatonin to help me sleep. I'm also in peri-menopause so not sleeping isn't just from CFS.

I don't know if this will help anyone else, and I'm not trying to "sell" anything, I just know what it's done for me. I would suggest reading "The Sinatra Solution" to anyone with CFS or FM.

I have to say....I'm still scared of it, because I feel like it's too good to be true, so I'm trying hard to keep my exercising under control and not over do it. I did run 10 miles one Sunday morning, because I felt so good, and had a very mild relapse the following week. I increased the dosage of ribose the following Monday and other than feeling some symptoms mildly and not running for two days I got over it in less than a week.

Good luck to everyone. Again, I'm not trying to "sell" anything...this is something that worked for me (after trying many different things) and I want to share the information to hopfully help someone else, even if it's just one person.

run262

Grailhunter

Regular Member

Joined : Nov 2008

Posts : 159

Posted 12/27/2008 9:20 PM (GMT -7)

Hi Wotan

I am going to try to answer your question as directly as I can and see if you can relate to any of it instead of trying to tell you how to fix it, cause if I knew how to fix it I would be busy writing a book right now and setting up a website instead of talking to you.

Chronic Fatigue can be anything from you just feel tired all the time to a whole bunch of symptoms that are like layers on a onion. The worst symptom is the one your going to focus on at this moment. Peel that one off somehow and there is another one under it and so on and so on.

At my very worst times in my 14 years of having this, if energy is life, I felt like a inch from dead. Regardless of a full nights sleep, I would get out of bed feeling like I had 50 pound blocks of concrete strapped to my feet. Then I would drag those feet all day long, dealing with a myriad of symptoms. Anxiety levels going up and down. Panic attacks. Mental focusing problems. Feeling like I wasn't even looking at reality anymore. Horrible neck aches, horrible jaw and facial pain, plugged ears 24/7 for months, headaches, eye pain, blurry vision, dim vision. Driving and feeling like I was going to pass out behind the wheel. Allot of times I would look at the world around me and think, this does not look real. I was living in a mental and physical hell. The more I let myself think this, and focused on it, the worse it got. It kept feeding back on me stronger and stronger.

It took me 2 years to peel this onion and get myself halfway straightened out. I never took drugs the first time around with this. Maybe I should have. But instead, I looked very closely at where I was in this mess and I realized something. What we are is essentialy what we believe we are. If we believe were losing it, the mind and body will give you back what you believe and focus on.

This is going to sound like new age clap trap, but I went to two different Psychologist and told them what I figured out and they both said the same thing after a couple of sessions. They could not tell me how to help myself, because somehow, in the middle of my mess, I had figured out how I got there, and figured out how to get myself back out of it. What you are is what you view yourself to be. The first step in the direction of "normal" is to act "normal" regardless of how you feel or think. Focus on something else, anything else but the symptoms, whether they are physical or mental.

This is the one thing we all have in common is that our self perception gets messed up in this to different degrees. Some people it hits a little, and some people lose their complete sense of self. That is basicaly what Ego is, our self perception of who and what we are. Chronic illness tears up self perception. We first lose our sense of self to the illness and this is very traumatizing. A stable self perception is what protects us. With our self perception damaged, even shattered for some, we become very vulnerable. Most of us, once we deal with it long enough develop a new, modified self perception that now has the coping skills to change what we can, and not let what we cannot change take control.

That Doctor wrote down CFS because its a disorder of exclusion and it seems as far as he was concerned, enough had been excluded to put that tag on there. What he wrote down though is not all that important. What is important is that you realize that how far this goes, how much it ends up hurting you, how far it takes you down is more in your hands and how you view it and yourself, then probably any other thing. You are not and will not lose your mind unless you bring it on by believing you are and focusing on it.

Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Near Constant Dyspnea. Disequilibrium, prolonged standing, walking, progresses late in day.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Glucosomine, Condrotin, MSM.

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