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Chronic Fatigue Syndrome
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Posted 2/12/2006 12:04 AM (GMT 0)
as i've only being struggling with CFS for 6 months now, i'm only starting to realise what it really means - how it affects everyday life and everyday i'm facing a new challenge. One challenge that i seem to constantly have to battle is a feeling of lonelyness!! I have many friends around me and they support me fully, but they tell me to get my act together and pull my socks up! it doesnt matter how many times i explain to em that its not that easy, they just don't get it. this is when i feel alone and lonely! how do you cope with this feeling? i find it difficult to keep my spirits up and end up feeling low for days on end!!!!
is there anything you can do??
Aloha
Posted 2/12/2006 5:06 PM (GMT 0)
Hi Shaper,
I have not been diagnosed with Chronic Fatique Syndrome, but I have fatigue so severe. I have rheumatoid arthritis. I think when a person is sick with CFS. depression is going to set in. Your life has changed. You are probably feeling alone because you don't have the energy to do anything with people. I bet you spend most of your time alone. I say this because, I do. I am not able to have fun with my family and friends. I can't work or do any of the things I want or need to do. I don't think you can possibly keep up your spirits when you are so tired. I do believe that you need a good anti-depressant. Actually I think you need Speed. Just kidding. :) I am taking Wellbutrin XL 150mg. If it helps, it seems to not very much. I have to admit I don't take it. The doctor gave it to me, but I didn't see it helping me any, and it seems I am on so much medicine already. I hope some more people will share on this subject. I just don't know much about it even though I have read tons. My guess would be that anyone with CFS has great feelings of lonelyness. I hope you have some kind of medication to help you, and I do believe you may need an antidepressant that works for you.
Posted 2/12/2006 10:36 PM (GMT 0)
Shaper, I don't have much advice, I just wanted to let you know that I think a lot of us with chronic debilitating illnesses feel this way a lot. Even friends that are supportive cannot fully understand what this type of fatigue feels like - it's something that all the rest in the world wouldn't fix. There is a really great story written by a woman who has lupus and she has an ingenious way to explain to healthy people what it is like to live with a debilitating illness. THe name of the website is: www.butyoudontlooksick.com (sorry I don't know how to make this a link). Then go to the Spoon theory. I printed the Spoon theory out and gave it to my close friends and family and I think they better understand what I go through.

I'm not big on the antidepressants either, although I know they have really helped some people. I tried several (I was willing to try anything to help with the fatigue) and I had terrible reactions to each one.
Posted 2/17/2006 3:38 AM (GMT 0)
Hi Shaper,

It's easy to feel an idiot at times with the brain fog etc, to withdraw and not to make the effort to contact anyone.

I agree with Hippimom that it seems to come with illness.

Antidepressants weren't something I was keen on but in the end I had to take them. In CFS they only give you a small dose as we don't need the big doses.

It's finding the one that is right fior you. In CFS sometimes they like to use any that are called tricyclics. I think they have an anti allergy component to them that can help.

My daughter was on Amytriptyline for 4 years but when I looked it up on the net I saw she was having a few of the listed side effects so we changed them.

Her meds are now Aropax 30mgs, ritalin (just recently prescribed as a trial 10mgs) and melatonin 1mg (to help her sleep) She can take 0.5 mg clonazepan if she gets very depressed, but only on an occassional basis.

I take clonazapam 1/2 tab 3x daily and that has calmed down a lot of the symptoms I was getting. They put me on .5mgs every 4 hours (4 lots in a day but I couldn't stay awake so I cut it back to 3x)

I had a bad reaction to one, I'm really careful about what I take now.

Most of the people I know started, and stayed on really small doses.
Posted 2/26/2006 3:41 AM (GMT 0)
Most of us report losing our friends.  After all, we generally  can't go out w/ them, visit them, invite them over, etc.  And friends from work drop away as the common bond of working together is gone. 

Part of the problem is language.  Healthy people think you are depressed about  something.  They don't understand the concept of depression as an illness.

And they know what fatigue is.  You get it from working, you rest and then you're fine.  Only it doesn't work that way w/ our kind of fatigue. 

It's good we have message boards and can talk w/ others in the same leaky boat.

Posted 2/26/2006 11:59 PM (GMT 0)
Lately I've been making myself go over to a friend's house. I sit here and think to myself,... I don't feel like going anywhere (after a friend calls to come over)... and I really don't feel like going anywhere. But, I'll hop in the shower (if I hadn't already today), put my clothes and shoes on, grab my keys and go to the car. During this entire process, I'm thinking to myself (I REALLY don't feel like going anywhere)... but I do anyway. Once I'm there, I'm fine. (This isn't an everyday thing though... but I do try to get myself out of the house now and then, because it's not mentally really healthy to keep yourself locked up in the house if you can help it).

Although just diagnosed recently, I've been dealing with CFS for years (think 10-11), and I'm only 25 (well I'll be 25 on March 11th). Sometimes just making yourself go over to a friend's house and hanging out helps. You don't have to go over to your friends and run a marathon or clean their house or anything, but just to go sit down with them, talk, let yourself have a good time while you're there... and when you start getting tired, just leave and go home.

It's really hard to get up the motivation to do anything, but sometimes you just have to make yourself get out of the house now and then. I know Provigil has helped me a lot in many many ways. But from my personal experience, if you let yourself fall into a slump, it's even harder to get out of the slump once you're in it.

In August, I'm starting college for the first time finally... and I'll be working on getting my Baccalaureate in Animal Bioscience, then going to grad school to get my Doctorate in Veterinary Medicine. I know it's going to be hard, and I already know it's going to be impossible to work AND go to college full time,... but I've put my foot down to myself. I'm going to do it, and I'm not going to stop until I get where I want to be.

It does make it very difficult when the people around you don't understand what you're going through. My mom STILL doesn't understand why I can't just get a good night rest, and get up and go. But the important thing is to not push yourself TOO much, but to know that now and then you have to. Getting out of the house is hard for me, but I've also found that a lot of times once I'm out of the house, I'm actually happy (then again, it's nice to not have to listen to fighting and arguing and bickering all the time too... which is quite abundant in this house since my mother and sister can't seem to get along). Yet, I'm stuck here because even if I did move out (which I'd LOVE to)... I won't be able to afrord to live on my own while going to college.

Ok... I'm done rambling lol. I don't know if any of that helped or not, but I hope it did at least some.
Posted 3/3/2006 8:00 AM (GMT 0)

Hey Shaper,

I'm going though the same thing right now with my family.  It's tough when you got people telling you to snap out of it (I wish heheh), and coming up with their own reasons why you would be tired.  I think one of the best things to do, is to find something you really enjoy doing, and if that thing happens to include other people then that's awesome.  I had a really hard time in high school, but it wasn't until grade 12 when I guess I gave up for a while.  I had always liked video games, and music, and at the time I was playing a game called Vagrant Story.  While searching the internet for some cheats, I found out that all the rooms in one of the dungeons were named after Iron Maiden |m|/ \|m| songs.  So I borrowed my sister's boyfriend's discman and one of his Maiden cds, and got myself back to school.  It was kind of late for that semester, but the next year I picked up a guitar class.  Been playing ever since.  Of course, I'm not as young as I used to be so it doesn't take long before my arms start hurting (I'd better stick with Neil Young heheh).  I try to be as understanding as possible, so I'll accept that not everyone is so fond of music (especially of the heavy metal/rock variety).  But it's like FallenAngel said, sometimes we have to ignore the impulses that confine us, and go to a friend's house for a while or try something new (excluding anything dangerous :P).  And there's always things to do on the internet.  If you like reading and you're pretty imaginative, I highly recommend joining a role-playing forum of your choice.  It's a great way to meet people who like writing.  I think it's good to take pride in the little things.

I think I devote most of my energy to pretending to be normal.  So that coupled with my extentsive sense of humour kind of throws people off when I tell them there's something wrong with me.  Then they come to their own conclusions.  I personally don't like to complain, but I don't like to lie either.  So, when someone asks me how I feel... I tell them, hahah.  I also have this thing against people who say "good morning".  Uh, no it isn't... lol.  Just kidding, any morning that I wake up is a pretty good morning for me.  Also, the Spoon Theory is pretty amazing, thanks for the website hippimom :)

Just remember that you're never alone.

Yeah, I think that's enough for now... But if anyone wants some of my early recordings, just ask (though you'll have to put up with my terrible singing voice lol).

Posted 3/6/2006 11:42 PM (GMT 0)
I've tried acupuncture lately and it seems to be helping!the guy thats sticking the needles in me says that the viruses i had before the CFS was diagnosed are laying dormant in my system and they're not helping but after one session i've got my colour back and my energy levels are on the rise!! So much so that i've started climbing again (its like i've never being away) i'm trying to build my strength levels up with some exercise classes at the local gym! it seems that i'm on a high platue, so i'm trying to fit as much fun in as possible before i hit that low again!! everybody being a BIG help and there is a lot of information out there if you have friends on a forum like these that are in the same boat as you and the internet! I hope everybody else can find a solution to there illness that gives a little bit of fun and freedom to your lifes!! keep gliding and spread aloha! Although i still suffer from crippling muscle pains i can get out of bed in under an hour yipee!!

Take it slow and steady
Aloha
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