A few weeks ago, my specialist diagnosed me with CFS after 6 months of tests (so many tests... I won't bother listing them all). He basically had no more tests to do so gave me the label.
I have another doctor I'm going to that is currently testing me for Lyme Disease... so I don't feel like I've completely exhausted all options yet.
I definitely had some sort of virus going on in the first few months, which just never left.
Anyway, my question to CFS sufferers is, does taking time off work help? At the moment I've reduced my hours from 9-5, Mon-Fri to 10-3, Mon-Fri. I've been on these hours for probably 3 months. Most days I still need to go to the car to lay down at lunch time, by 2pm I'm shattered and struggle to drive home. I'm in bed by 3.30, usually resurface for an hour for dinner, then back to bed.
I've heard different stories. Some people say work as long as you can... even if it's 5 hours a week... just to keep your sanity. Other people say that if they had known this thing was going to last for a decade, they would have tried listening to their body right at the start.
I love my job. I don't want to stop... but at the moment it's really hard to do it. I can't concentrate or think... I'm usually very highly motivated and love multi-tasking, but at the moment I feel extremely inefficient and slow.
Do you think taking a month or two off would be beneficial? I have a good network of friends that would come round - I don't think I'd be too isolated. I hope.
I saw some numbers at a CFS conference that 60% of ppl with CFS come out of it within 5 years. The other 40% basically dont come out of it , although some have periods of recovery but then relapse.
The fact that you can handle some work, albeit with extreme difficulty , is a cause for optimism. Some ppl are totally bedridden. I think you will be in the first category.
The current Australian winter will be the worst time of year for you. This is the time of year that ppl get the flu , and their immune system finds it hard to fight the flu.
I would hang in at work for the time being till the heat moves back in.
I would try the following remedies to alleviate your condition.
On weekends , or during the week if you can handle it , get into a sauna (take a short term gym membership) and do the sauna , into a cool/cold shower ,and back into the sauna thing.
A very good previous article in this forum about curing CFS was to eat mostly vegetables. Get frozen vegetables from the supermarket (they heat quickly) and eat as much as you like morning , noon , and night. If you have a tough day ahead , eat a small amount of fish. For a short term mental boost , eat a small piece of 70% cocoa chocolate.
No dairy or gluten.
Hang in a bit longer.
Because of my illness and my dedication to my career over time I ended up only being able to stagger, then crawl to work. I had to cut so many things out........I loved my career and put my health too far down on the list. I didn't prioritize correctly. I have been chronically ill since 1997 and now am officially disabled as of 2010. My self-motivated hard work ethic cost me valuable limited energy........looking back I wish someone would have laid out health risks and life changes succinctly......given me a truer picture of what was happening to me. I didn't know anyone who had my conditions although I was very fortunate in finding a great diagnostician pretty soon after I became ill. I thought that I had to work to live..........now living is so much harder. Why didn't I listen to my body? While we need to be active, we are not the same any longer, we are changed. We need to treat ourselves with the greatest respect and provide the best self-care possible for our bodies everyday. Keep seeking best answers.... Take care, Serce
Last edited by moderator2; 07-26-2012 at 04:22 PM.
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I don't think taking time off works. My experience was that I felt bad whether I was at home or at work so I might as well work. In fact, I think I felt worse laying around the house.....time seemed to stand still and I felt like I suffered more.
My own experience is that the disease does not progress, it just persists. So working doesn't affect the prognosis. If you enjoy your job, then continue at it. At least you will feel useful and have an income.
Hi. My CFS got worse as the years went on and then I had a 4-month medical leave in 2010 and then a 6-month leave in 2011. I then applied for Social Security Disability during my second leave from work, and thankfully I got it a few months later. Then work wanted me to come back but I was physically unable so I had to retire in order to keep my medical insurance. I get more with my SSD than in my pension, so I'm so very fortunate. I applied with both Fibromyalgia & CFS, and now the government recognizes Fibro more than CFS. A rheumatologist can diagnose Fibro right away. I agree that there are all degrees of CFS and some can't work at all. All the best to you.
Hi there. I've had ME for 2 years and struggled on with work for exactly the same reasons as you give. The sanity of still working, the money, the company, feeling useful. I was doing justbthe same as you resting in myluncbreak straightbot bed when i got in. Well my health has deteriorated and deteriorated over the past 2 years to the point where I am now bed bound and have to resign from work and life itself! In hindsight, I wish I and given up work earlier and just rested my body whilst it was still in a state to recover. Now it has gone too far and I am unable to recover and now have no life at all. Listen to our body..... Rest it and let it heal itself. Love and hugs to all fellow Cfs sufferers. When will someone with money and influence recognise this disease for what it is .. It robs you of everything, totally everything and there is no state support, or treatment or proper research. Heres hoping one day there will be. Love to you all
So sorry about your inability to work now. Please go to a rheumatologist to see if you have Fibromyalgia so you can apply for Social Security Disability, because I believe that will help your case having the Chronic Fatigue also, at least I'm speaking from personal experience. Of course if you have a lot of documentation from doctors of blood tests, etc., from the past years, perhaps you can just apply from the CF standpoint. All the best to you. You are so right on when you say to rest the body so it will heal. That's the only recourse we have right now since there's no diagnosis out there. And the resting is the only thing that works for me after each extreme bout, and there are many. Please take care & I do hope you apply and get the SSD. Let us know how you're doing in the future.
Well I feel that it would have helped me and I so wish I had done it. I struggled on for 2 years to the point where I am now not only unable to,work but I'm totally burnt out and unable to even get out of bed. The trick to assisting recovery is to,look after your body whilst it still has some energy reserves. I would strongly suggest giving up work whilst you recover, I wish I had my chance again and I would definitely have left work or at least reduced my hours. I have seen a number of doctors and specialists and they have all said to me the best chances of recovery are resting and pacing as soon as you can after first becoming Ill. Being arrogant, I thought I could beat this disease in the same way I have done all others, but this one is different, it has beaten me and my advise is don't underestimate what this terrible disease is capable of.
It has cost me my Job, my relationship, my home and my life, ... Dont let it do the same to you.
Please ask any questions you like........ The NHS are pretty useless so these forums are all we sufferers have to try and help each other through this terrible ordeal.
I do hope it won't take too long for you to start getting your energy back. I had a 4-month and a 6-month medical absence from work in 2010 & 2011, and then had to quit work. But I'm so fortunate that I receive SSD because I applied in 2010. I suggest and advise you apply also. You have nothing to lose at this point since you cannot work. I really hope you get the SSD so you don't have to worry anymore. Don't give up. My energy is just starting to come back now from a month's bout, but still am not ready to go out. I'm at the point that if I stay in my energy will come back gradually but steadily. Please let me know when you start feeling better. I know it's a slow process, and I agree that we people on the forums have to stick together. REST! and all the best.