[icinggurl]

Can anyone tell me what the point of living is when you have chronic fatigue syndrome? I'm 42 and what's the point of living if I'm just bedridden for the next 20+ years? I'm not planning on killing myself. I wouldn't do that to my family. I just want to know what others think about living like this. It just feels like I'm a shadow of who I used to be. I don't know how people go on like this.

[growlycat]

Do you have good and bad days or have they all been bedridden days?

What does your doctor say? A good Dr. should help you find options.

[healingme4me]

CDC - Treating the Most Disruptive Symptoms First - Chronic Fatigue Syndrome (CFS)

I'd talk to your doctor about management of your illness. It is real and debilitating, but they need to help you learn to be able to function.

One thing, that MS patients, like myself, try to do, is what we refer to as 'counting steps'. It's an effort to 'conserve energy'. There will be good day and bad days. There are days, it would be nice to stay in bed all day, then there's planning ahead to try and attend an event or even go to the grocery store. Running errands, can be exhausting. Learning your own ebb and flow of energy can be helpful.

Have you checked out the CFS forum, on NT? Finding a support group with others dealing with the same illness can be helpful. You can learn ways to help yourself, not feel like you'd be bed ridden for the rest of your life.

Living with a chronic illness, that involves as much fatigue as yours, isn't easy, but you aren't alone.

How long ago were you diagnosed? If it's recently, that first year almost feels like a life sentence. After time, and learning your own personal ups and downs, suddenly can feel like there is hope in life.

[lizardlady]

Icinggurl, I might not be a good one to answer you given my current state of mind. I was diagnosed with CFS and fibro about nine years ago. Right now I'm in one of the bad periods that helaingme4me mentioned. I drag myself out of bed in the morning. Drag myself to work. Come home and crash on the sofa. Am asleep by 9PM (8 some nights) Repeat each day. Weekends I sleep 12-15 hours a night trying to get some rest. I confess that lately I'm wondering what kind of life this is. There's got to be more to life than work and sleep.

Some people mentioned talking to your doc about managing symptoms. My primary care doc is less than useless. Last time I mentioned being tired all the time and wondered if there was anything we could do her response was "Well you have chronic fatigue...." I wanted to smack her.

I'm trying to be accepting of my current level of fatigue. I'm trying my best to ration my energy through the day. Still, I'm royally pissed that I have to deal with this.

[icinggurl]

Thank you everyone for your responses. It does help to hear from others dealing with this. I do have good and bad days, but its completely unpredictable. Some things that I would think would cause a crash don't, and vice versa. I am dealing with some tremendous family stressors right now. My shrink referred me to an internist she knows that won't dismiss me for being 'crazy'. I'm almost scared to hear what he says because what if he says there is no hope? I can't begin to count the number of times a doctor has told me that they have no idea what's wrong with me. One doc even said he'd 'thrown up his hands' on what to do with me. Plus, I'm already taking many of the meds that are used to treat this. Every time I have one of those bedridden days I begin to panic because staying in bed for months was a depressive symptom that preceded my first manic episode and it was the most terrifying thing I've ever been through. The mania started to cause psychosis and that's how I got diagnosed with schizo-affective. I thought that was a death sentence by itself, then this! My #1 fear is relapse and any little thing throws me into relapse panic. I already have celiac which is also an autoimmune thing, but I've been gluten free since January. My stomach is better, but everything else went to hell. I seem to get one bizarre illness after another and none of them are ever curable. It's like I'm cursed (I don't mean that literally - I'm not psychotic again) I will check out that website and support groups. This is all very recent still. Thx again - it does help to hear other's stories, both good and bad.

[icinggurl]

Have any of you guys ever had ECT or know about it's effects on the brain/body? I don't even know if it's relevant. I had 18 treatments in 2011 and it helped the depression in a big way. I did struggle a little with my memory and the ability to concentrate, but that's all improved greatly. I would do it again if I needed to. At this point, I don't even care if they just fry my brain.

Icinggurl, you definitely aren't alone. I'm almost 48 and I have bipolar, fibromyalgia and bouts of chronic fatigue. I used to take Provigil for the fatigue and it really helped but gave me bad headaches so I quit. I know some docs prescribe stimulants (for example, Adderall) to help with fatigue. Adderall made me way too hyper, but maybe one of those meds could be an option for you? Also, regular exercise - - building from minimal to 50 minutes of even walking every day - - can help. Lately I've been a slacker on the exercise. That's probably why my fibro symptoms are worse.

My life is so much different than I thought it would, and it makes me feel sad, mad and cheated all at the same time. I bet you can identify.

Just don't give up. I think I should follow my own advice. Good luck to you.

[(JD)]

Actually, I think CFS can instantaneously remiss so there is hope. (My brother's went away...now that I think about that.)

Take the good days, try not to predict a life without them.

I would check into the ECT issue... when they do that your whole body convulses with muscles spasming etc. (Yeah, these days they give you a medicine but IDK that that makes it any better, really.)

[icinggurl]

Thankfully with ECT they also give you a paralyzing med, so the seizure is supposed to only occur in your brain. They told me that the most anyone will notice is a pointing of the toes which didn't make sense until I read that they put a blood pressure cuff on your ankle so they can see that you are literally seizing. I don't remember them doing that to me. They still put that bite guard in though, maybe as a precaution? I never had sore muscles afterwards and the few times I had a headache, it wasn't that bad. Of course, I may not be remembering it accurately (yes, that's a giggle remark).

I tried Adderall and that made me even more fatigued despite never having a ADD/ADHD diagnosis. Provigil preceded my first mania. I'm now on Nuvigil, but it's not helping much anymore. I know there are even more meds out there to try. I'm already on Cymbalta and Neurontin which are supposed to help CFS (I heard).

I finally made that appoint with the CFS doc. I'm nervous about it. Thx everybody!

[Perna]

I love the Mayo Clinic's pages on difficulties I have: Chronic fatigue syndrome - MayoClinic.com

They have a few different things to try on their "Treatment and Drugs" link, especially graduated exercise.

[(JD)]

Yeah, well, now think about that... a paralyzing med.... and imo that is part of the problem still with the convulsions ECT caused... part of the controversy... just because a person doesn't flail about doesn't mean the muscles aren't straining and being affected... IDK have you researched for any studies on this possible connection?

Anyway... one foot in front of the other... the chronic fatigue can ease.

[SeekingZen]

Hi icinggurl,

I am so sorry you are in so much pain . I've wondered this myself too many times I'm afraid. Just know that there will always be good days ahead; they won't always be like this.

How long have you been dealing with CFS? Have you tried Tai Chi, QiGong, accupuncture or massages? I was surprised to find that Tai Chi and Qigong (sp) actually helped me somewhat. I hope you have some more good days soon!

[FlowerChild67]

I have cronic fatigue from MS and having trouble learning how to deal with it I get up everyday and try pushing my self so I don't end up bedridden as I will fight MS and not let it win.
SamanthaAnne