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I haven't been officially diagnosed yet but I've been to many, many doctors for years and they all believe that most likely it is cfs. I recently started to work again( after three years that I avoided to because of my symptoms) and I find it very difficult to go through my day. I suppose some of you work while dealing with cfs, so do you have any tips on managing with the symptoms? I am in really bad shape, most nights when I try to sleep I am so exhausted that I really believe that I will die in my sleep and when I wake up exhausted again I actually wish that I had died. Any tip or opinion is valuable so, please, anyone...
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Alex I am sorry no-one has replied as yet. I have had this for 20 years and the main tip is PACING. We must take as much rest during the day as balances our exertion. Otherwise you go into energy debt and that is when we get symptoms. We also have to reduce the amount of energy we use up.
Thus going to work sounds like it is really more than you ought to be doing in a day: because the symptoms you are getting in the morning are acute warnings that you are spending more energy than you can afford. If you keep on doing this you will get worse, whereas it is possible to get to a place of balance. Only from there can you start to improve.
This is a terrible thing to face, I know, but I would recommend before you do any more damage that you get signed off work. Then you can rest during the day till you notice an improvement in the symptoms upon waking. You are probably going to have to face a different lifestyle. Don't think it will pass. CFS is a noose that tightens the more you struggle. This will be very depressing to hear, but it is the only way. Then get yourself a proper diagnosis, get into a clinic and do what they say. You may as yet have the illness mildly but because you are pushing yourself the CFS is pushing back hard. The severity of the illness is calculated on the basis of the level of functioning and the amount of rest required to maintain that. If you are working all day then your functioning is very high, so there is hope. But you must take action because a collapse could be imminent. May God bless you.
Thank you so much for replying. I have been pushing myself a lot and although I function I have headaches constantly, my lymph nodes are more swollen than ever and I get nosebleeds a lot. I need to work but I will look for a less demanding job. thank you so much for your input, I appreciate it.
Alex from what you say I am guessing you are from the U.S.? If UK I could advise on benefits etc..
I am from Greece actually which is worse. there are no benefits but also no doctors that specialize in CFS. here when most doctors hear the words "chronic fatigue" send you to the psychiatrist because, as they say, "it is all in your head". I guess there are doctors around the world that do that but here they are the majority
Alex, it sounds like a nightmare. Better Recovery from Viral Illness by Darrel Ho-Yen taught me a lot. Trawl every doctor in Greece for one who believes it is a genuine malfunctioning of the body's energy system. If there is no-one then self help is your only chance. In any case there is no cure for CFS, only management, which allows the body to heal itself. The only treatment the best doctor could recommend is a complete change of lifestyle. I can't emphasize more strongly the need to step out of your cycle of over-exertion followed by awful fatigue and these terrible symptoms. Your health is SO important, don't take a short term view, otherwise you almost certainly will get worse and worse and it could take several years to come through. The average is 7 years, but it may not be so long for you. Employment, well-being, relationships all depend on health therefore my advice is to prioritize your health. This is a key moment in your life. Think where you want to be in five years time. What you decide to do or not to do NOW will have profound effects. I can't put it more strongly. God guide you.
Thank you for your help. I started looking for a less demanding job so that I can start getting better, even a little bit. I have made a lot of lifestyle changes in the past three years and I want to get better so I will keep going until I succeed. thank you also for your suggestions, I was actually looking for books that may help so your timing is perfect
It sounds like a difficult situation but you are doing what you shouldn't be doing, probably because you need to pay bills and what not.
Your ME/CFS will only get worse if you continue to push yourself. It is rule number 1 really, rest and not pushing yourself is most important.
If possible work less hours, maybe see if you can work from home some of the time? Find out what you are capable of doing without increasing your symptoms and feeling worse and work within that limit.
You are right about not pushing myself, but working is a necessity at the moment. I will look for a better job, though, with less hours, maybe something part time. I really need to think this through. thank you for taking the time to reply
I'm sorry you feel that way 😦 My girlfriend (well now, fiance) suffers from fatigue. She went to a couple of doctors (despite them costing an arm and a leg) to get blood and urine done, and found virtually nothing. They said her cortisol levels were high, and that her body essentially runs on adrenaline...
Eventually she decided to just focus on her diet: eating enough foods and the right foods, and making sure she was hydrated. Are you doing that?
She also tried some multi-level marketing essential oils "red mix," which didn't do anything for her energy. Then she tried an energy pill (Extreme Energy by Herbal Nitro, or something), and that helped her a ton. While some days more energy may help, you'll have to figure out your limits: If you know, or think you know, something will exhaust you... DON'T DO IT.
My fiance's a Type 1 on the enneagram (or whatever), so she constantly thinks she has to say yes to everyone. If you work a lot or find yourself too busy, you'll have to say no to people (or no to your favorite things) until you can get a handle on your symptoms.
I hope this helped ❤️
I'm sorry, I meant to like the message below.
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