Chronic Fatigue Syndrome Community

Dear one,

Welcome to this community. You're definitely not alone in how you are feeling.

It is a huge transition, learning how to deal with a debilitating chronic condition. But I want you to know that how you are feeling today, how dramatically it's impacting your life, doesn't necessarily indicate that it will always be this bad. You will learn how to live, how to pace yourself, how to get help from others around you, and to laugh again.

I'm glad you found us and look forward to the input from others. Please know it can be fairly quiet in here so it may take time to get more responses but they'll be there eventually.

Welcome. You have come to the right place. I know that it is devastating when CFIDS/ME hits so hard.

Do know that it will get better that you will learn how to deal with it and the people who come to this board can give you support and wisdom.

Hope that you will continue to come here and that you realize that this board moves very slow, of course that is due to the limited energy that we all have.

I haven't been around here much at all since life takes up all of my energy and leaves very little computer time.

Years back I was on here alot, due to the fact that my energy levels were so low that I was unable to get out of bed, except for the bare nessecities.

Please forgive any spelling errors and hopefully you will begin to feel a little better each day

softest hugs
dragon

I'm sorry to hear of the loss of your job! I know how you feel and your name says it all! I was 42 when I started with the fatigue and could not understand why I was so tired all the time...9yrs later and I still have a hard time with it, dosing off at the wheel on the way to work and falling asleep while standing up working! People at work know I've been dealing with being tired and always coming into work late, they don't tease me about being fatigue anymore. I had blood work done and found out I needed iron and Vt D they were very low, however, they are normal now and I still feel the same way. I dose off at church services while the preacher is preaching, lol. I do feel better that I finally know what's wrong with me and to let other people know makes it that much easier for me to deal with. Hang in there and keep in touch! I'm so glad I found this site, I also diagnosed myself because the doctor hasn't!

Hi ED...welcome to the group, but sorry you had to find us.

There's no simple answer to this...but feeling useless and worthless is counter-productive to you getting feeling more like a human being. Everyone has worth, and it's not based on what they can do....it's based on their humanity...nothing else. You might be helping folks and not even know it...someone calls on the phone and talks to you...you don't know...that might be just the thing they needed right then. Heck, just the fact that you're around counts.

The feeling of the deep, bone-tiredness will fade over time, and you'll get some of your oomph back, but probably not to the level pre-CF..but you'll find work arounds too....like when I whacked my back in an auto accident, I taught myself how to pick things up with my toes...socks, utensils that I'd drop, eventually, I could pick up a dime off a hard-wood floor. It was a work-around since I couldn't bend over. Your body/mind will do things, seemingly, on their own and something will pop into your head to try.

Just don't give up on yourself...you're the only you you've got. You don't need to run yourself down, other people will be doing that, but you don't have to believe them or even listen.

Good Luck, and don't forget...there's always someone here who is willing to listen and help if we can.

Take Care,

Jim

I, too, have Chronic Fatique Syndrome.3 years now. I am on Disability because I cannot work. I also lost my apartment and had to move back home with my parents. Not an easy transition.

I guess I would say to you, don't focus on what you can't do. The list will soon pile up and you will probably end up feeling depressed. Focus on what you can do--you can still walk. Some people with CFS are bed-ridden. You can still write a coherent e-mail on the computer. You can still express how you are feeling.

You will probably have to give up many of your tasks for now. But, if you are persistent, you can divide some of them up into small pieces and slowly accomplish them.

I would say forget the doctors if you don't need to see them. I have Bipolar II Disorder and my shrink understands the CFS better than any other doctor I have. If you can find one doctor, or one therapist, or one healthcare professional that somewhat understands CFS, you are ahead of the game
in my opinion.

Actually, there are a few things you can do for CFS medically. You can get on sleep meds if it interrupts your sleep too much. You can try to keep up exercise--even if only minimal.(This is very important--I did not exercise as much my 2nd year, and my muscles became very weak. I also gained 20 lbs. in one year. I must also note that sometimes as much as you want to walk, you simply can't.)In addition, I always get a flu shot right away b/c this illness affects your immune system.

If you need to see a doctor, ask the receptionist to find out if they have ever seen anyone with CFS.

Hope this helps. Don't despair!

Dear ET2tired,

I am sorry that you deal with such great fatigue. I was concerned to hear that you doze off at the wheel and fall asleep standing up at work. These actions could be a danger to you and others.

I have CFS, and I have not heard of these symptoms being associated with it. It sounds more like narcolepsy. If I were you
I would find another doctor and visit him/her pronto.

Beth

I have been having that kind of day today. I had to call my husband at 3:30p to see if he would mind making dinner cause I have been falling asleep all day. If I stop I just seem to drift off and when I awake I am always suprised that I have been asleep. Actually this has been going on for several days, don't know why.

If I could suggest - I've had a very serious case of CFS for a number of years, and it was getting worse - until I discovered a DIRECT connection between eating any kind of cane sugar (brown, powdered, liquid, regular) and serious fatigue within about 12 hours. Fortunately I found that other 100% natural substances like pure maple syrup or unprocessed honey do not have the same effect, and I'm much better now. But, every time I eat sugar it comes right back with a vengeance.
The challenge is eliminating sugar - when you look at the ingredient lists in even organic food, you'll find it's in almost everything. I was shocked to find it even in the organic chicken broth I was buying at Whole Foods!!! And it's in salad dressings, salsas, just about everything out there.
Try getting it completely out of your system; you may be very happy with the results!

I've been sick for years,So many doctors said it was in my head & many family members thought i was a hypocondryac.I've been told it was pancreatitus & lupus(sle) & many other scary thangs! I've been admitted to the hospital for my liver enzymes reaching over 2000,I had a liver biopsie done still no answer to whats wrong? Finally last year the rhematologist confirmed by the 2d visit that it wasn't sle but cfs? And i'm scared because i'm at the begining & as sick as i can be,I'm terrified at how much worse i'm gonna get? I also have had fibromyalgia for many years,I'm constanly in pain! & tired,No body understands or wants to not even my own husband! Sometimes when everyones sleeping i go into the bathroom & just cry my eyes out,because i'm so alone in this scary painful battle! & I have a 9 yr old lil' girl who see's how sick i am & she believes me when no one else does.I just wish i could be normal again,I hope to find comfort & support thru this community,thanks 4 listening when no 1 else will.

Pillowgirl- I'm sorry you feel so alone in this. I understand completely. I've had CFS as well as Fibro for 20 yrs now, & yes, it is extremely frustrating because when people look at you you appear "healthy" but they aren't inside of your body. My best suggestion to you would be to find a CFS support group in your area (your local hospital can help you with this) & go with your family. Sometimes it helps people who don't get it to hear from other people the things that you've been saying all along...then they begin to understand that maybe this isn't all in your head. It's wirth a shot. Also I have found yoga to be a godsend! It wasn't easy at first, but now, I couldn't imagine life without it...it's kept me from being bedridden. Diet also does play a role, the healthier things you put into your body, the better you will feel. I am on a strict vegan diet (no meats or dairy). For me, this combo has been helpful. Of course there are always going to be days where I want to scream from the hilltops but they are far fewer since I've changed my lifestyle. The 1st step is getting your ENTIRE family on board, support is so crucial! Without it you will just be stressed out & stress makes you sicker. Try the support group, I really think that will be a step in the right direction. The people there can also direct you to good Drs & information. Good luck, stop crying (you're not doing yourself any good! Be strong girlie!), you can do this! Keep us posted!

I'm sorry that it took me so long to find this board!!! I COMPLETELEY understand what you're going through! I feel tired ALL THE TIME, and have been fired from my job, due to feeling sick and being absent alot. I have also had occasions where I've almost passed out from being so dizzy,(which was crazy horrible in front of my co-workers!). I haven't felt well enough to go back to work yet, and friends have mentioned going on disability. One, I don't know how to go about doing that....and two, I would really just like to get better, and hold my head high...with a job! my doctor has diagnosed me with glomerulosclerosis, but strongly believes that I have lupus instead, and is having me see a rheumatologist. I believe I have cfs, due to all of my symptoms!! If u have any suggestions, please let me know!

I'm new on here. I do understand about the sugar. I learned in my early 20s that sugar made me feel deathly ill--the so called sugar drop.

I've not yet been diagnosed with CFS but on my internet search I do find I have 4 of the symptoms. This has gone on since my 20s. I've been diagnosed over and over with depression and while I'm sure that was some of it, there are too many unacccountable episodes--while on antidepressants. And now I am near 70 years of age and am so tired of this chronic whatever it is.

I'm also trying out a gluten free diet, about 2 weeks into it. My stomach problems have improved. If my tiredness is a gluten thing my energy should improve.

Nope, haven't been diagnosed with either cfs or gluten intolerance. Every time I go in I'm diagnosed with depression. I have been on an anti-depressant for several months and it seemed to be working but now but just spent the last two days on the couch.

I'm sorry. I understand how you feel. There are days that I do nothing except lay on the couch off and on all day and don't gget anything accomplished. I can not believe that I was working 50 hrs wk a yr ago. I got to a breaking point though, would go in late, or call in sick. I was barely able to function and finally went on FMLA. I have hepatitis c, fibromyalgia and a a neurological disorder called trigeminal neuralgia. All cause fatigue. I filed for disability while I was on leave and was accepted the first time. Are you on any meds yet? I take lyrica aand cymbalta.