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Old 06-09-2007, 02:47 PM   #1
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diddy_di HB User
How long does it last???

Hi,I would appreciate feed back from anybody out there who is further down the line from me.I have been off work for nearly a year with cfs and although there is small improvement I am nowhere near fit enough to do my job,hence I am about to lose it.So how long am I likely to be before I can support myself again?or is that like asking how long is a piece of string!!!!!!!
Thanks anyway any info would be welcome.

 
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Old 06-10-2007, 05:32 PM   #2
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shelovescliche HB User
Re: How long does it last???

There's really no telling with CFS. 30% of patients go through complete recovery, and never get symptoms again. Others' symptoms go away for a while, but will come back.

The best thing you can do is just to take it easy; don't aggravate it, only do what you know you can handle.

 
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Old 06-11-2007, 09:44 AM   #3
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Re: How long does it last???

I have suffered from cfs since sixth form (8 years ago) and have not been able to hold down a proper job since. I work part time as that is all i can handle (though sometimes even that has been too much). I suggest only do what you feel capable of - if you push yourself too much you will probably suffer more as a result. I have recently started working 4 days per week now, since taking this supplement that has really helped me on the road to recovery.

Hope this helped,

Yas

 
Old 06-11-2007, 11:51 AM   #4
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johnlovesjesus HB User
Re: How long does it last???

hello, i've had cfs for over 10 years. are you on any meds? if not have your dr. try you on elavil. been on it for 10 years live normal life

 
Old 06-11-2007, 01:36 PM   #5
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tom5452 HB User
Re: How long does it last???

Hi Diddy Di, I've had CFS for a little over two years. I had a job but was forced to quit because the symptoms were just too overbearing. I've been off work for a while now, but in hindsite this has all been a blessing. About 3 months ago I went to an alternative Holestic doc. I found out that I had about 25 different food allergies and so they put me on a special diet which avoids these foods. I have noticed a steady improvement ever since. And although I don't feel 100%, I now have hope that I'll be back to my normal self. I also have found that valium really helps with the sleeping problems that comes along with CFS. So, you might want to try these suggestions. I've done a lot of reading and I think the most important part of recovering from this is for you to take control over your own recovery. I saw 10 or so doctors over the last two years and they all thought I was crazy and put me anti depressants....so change your diet and let your body heal

God bless,

Tom

 
Old 06-12-2007, 08:47 AM   #6
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diddy_di HB User
Re: How long does it last???

Thankyou all for those replies.Good to know you're out there.

 
Old 06-12-2007, 08:51 AM   #7
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diddy_di HB User
Re: How long does it last???

Quote:
Originally Posted by johnlovesjesus View Post
hello, i've had cfs for over 10 years. are you on any meds? if not have your dr. try you on elavil. been on it for 10 years live normal life
I'm only on anti-depressants so would appreciate if you could tell me a bit more about elavil,what is it?glad you seem good on it.

 
Old 06-15-2007, 07:32 AM   #8
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johnlovesjesus HB User
Re: How long does it last???

Quote:
Originally Posted by diddy_di View Post
I'm only on anti-depressants so would appreciate if you could tell me a bit more about elavil,what is it?glad you seem good on it.
hey diddy di, elavil is an anti depressant, however, it is one of the older ones, they call it the universal drug, because it is used for a lot of things. getting the dosage right is the trick. good luck- anymore guestions pop in

 
Old 07-19-2007, 02:08 PM   #9
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HowieMel HB User
Re: How long does it last???

I have CFS and am a year in and not at all well. However I think it is important to point out to the original poster that the people who recover and have and easier time of it are NOT the ones writing on forums years down the line. I hope that doesnt sound too cruel but the point is that internet forums are used by only a fraction of people with these problems. Those who are doing well dont tend to tell their stories. So remember that these forums although useful and supportive might give a more negative view of things that you can expect. Those how have been ill for years will rightly tell you how hard it is, yet those who are well wont come back to tell you they got better (though when I get well I promise to come back and tell my story)

 
Old 07-20-2007, 07:00 AM   #10
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FEELBAD62 HB User
Re: How long does it last???

I will too!!

 
Old 07-20-2007, 09:10 AM   #11
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diddy_di HB User
Re: How long does it last???

Quote:
Originally Posted by HowieMel View Post
I have CFS and am a year in and not at all well. However I think it is important to point out to the original poster that the people who recover and have and easier time of it are NOT the ones writing on forums years down the line. I hope that doesnt sound too cruel but the point is that internet forums are used by only a fraction of people with these problems. Those who are doing well dont tend to tell their stories. So remember that these forums although useful and supportive might give a more negative view of things that you can expect. Those how have been ill for years will rightly tell you how hard it is, yet those who are well wont come back to tell you they got better (though when I get well I promise to come back and tell my story)
That is a very good point!!
I have had 2 good days back to back....how nice is that?
I suppose its a case of continual pacing and management.I was doing this for a good 12mths without realising something was wrong.I just thought i was feeling my age (41) it was only when i did more than usual for a couple of weeks that I crashed totally.So much for celebrating my 40th...a couple of nights out a weekend away and I've never recovered!!! lol.

 
Old 07-20-2007, 02:47 PM   #12
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Re: How long does it last???

Hi, I visit here every now and then. I am one of those that has not recovered. I was dx with Fibro, TMJ in 1992, 1993 was the last day I worked. In 1994 was dx with ME/CFS and received my SSD and declared totally and permanently disabled. I could not even do light work. I got a bad migraine got it hurts. I suggest you don't push your body beyond what you can handle. I didn't know and didn't have a choice in the matter.

I was hurt by a chiropractor in 1991 to neck and jaw out of alignment bad. I had to work full time, went to college part-time and full time mom of 2 sons. I didn't know I was hurt that bad or what was wrong with me. My job put demands on me that I could barely handle and so with that I was determined to get through college to get out of that job. Everything went downhill fast. Less than two years I was disabled. I had almost every symptoms marked. Now, I am dx with MS since 12/06. I know I still have symptoms of fibro, symptoms from ME/CFS and now MS.

I hope you do recover. If any of you have neurological problems that don't seem to fit ME/CFS don't wait or think it is part of the syndrome. Please have it checked out. My neuro doctor really did not think I had MS. But he was wrong. I had double vision for 8 years and didn't say anything.

Don't push your body beyond that point. I pushed too hard but no choice and didn't know. Actuallly right now, I think I have attack arms going numb.

I did ended up with a bad migraine (pain level 10) that affected the rest of my body (numbness). I had to go the Urgent care for shots to stop it. It still didn't break the cycle. I had IV fusion to stop the migraine now on Depokate. I have never felt like this before.

God bless you,

Bunni

Last edited by tiredbunni; 07-26-2007 at 10:42 AM.

 
Old 09-19-2007, 11:00 AM   #13
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Re: How long does it last???

I've had M.E for a year now and I am very much better ( this is the awkward phase, I'm afraid, in which people question why you can do some things but not others....) although I can't do exercise on top of university and I save weekends for resting.

My brain fog hasn't gone away, which makes me very sad at times. I have lost my previous quickness and sharpness of mind and I feel like an old woman. Luckily, my sense of humour has only improved and I know now my priorities and how I deal with illness.

"What doesn't kill you, makes you stronger." I know it seems hard, but keep that phrase in mind.

Also-
"All things in moderation" is a phrase that rings true to CFS sufferers.

A few tips:

Give up stimulants:
caffeine was seriously messing me up. No alcohol, that is bad for us too.

Know yourself:
know your limits and the resources you have. You have to get really in touch with your emotions and physical feelings when you get CFS- it forces you to punch back at the world and be sure of yourself. If you are getting better, then try to gradually pace yourself and increase your everyday activity (e.g going to the shops and back). Only you know how much activity you can deal with in a day. Don't let anyone dictate it to you.
If you aren't getting better, DON'T OVER DO IT. My doctor made me omit exercise for the first nine months of the illness- only now, a year and three months later, am I considering rehabilitating myself.

STAY POSITIVE:

Don't read up on symptoms once you know the basic knowledge about CFS. I know that sounds a bit rude, but I found that looking up symptoms makes you blame every minor detail of your life on CFS and keeps it fresh in the brain. If you can forget it for at least ten minutes during the day, you'll feel a whole lot more normal. You can't deny that you are ill but you can't resign yourself and decide that your life will be dedicated to dealing with things. Find a balance.

Take care and hang on to that annoyingly tiny thread we all know so well,

Gobbo
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