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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Advice needed as wiped out 3 days a week.
- Thread starter Wendi
- Start date
Zebra
Senior Member
- Messages
- 866
- Location
- Northern California
Hi @Wendi
I'm afraid I don't have any suggestions, but I just wanted to say I am very sorry you are going through this.
I hope others on PR will have helpful suggestions for you.
Best,
Z
I'm afraid I don't have any suggestions, but I just wanted to say I am very sorry you are going through this.
I hope others on PR will have helpful suggestions for you.
Best,
Z
valentinelynx
Senior Member
- Messages
- 1,310
- Location
- Tucson
This sounds very familiar. When I was working, I spent any day not working in bed recovering. It was best when I could work 3 days per week and crash on the off days. Best of luck with your health.
Rebeccare
Moose Enthusiast
- Messages
- 9,066
- Location
- Massachusetts
I'm so sorry to hear that you're suffering like this. This sounds very familiar to me, because this was where I was when I last worked full time.
When you're so tired on your days off, I feel like it's your body's way of telling you that you truly need the rest. I'm curious: are you able to reduce your hours further? Or change the nature of some of your work so that you would be able to work from bed more? The fact that you have to rest so much on your days off makes me think that the amount of work you're currently doing might be more than your body can handle. For me, after I reduced my hours to a certain point, I found that I eventually became much more functional, both on days when I was working and on days off.
Unfortunately, there is no magic bullet right now. And sometimes things you can take that might make you feel more awake in the moment such as caffeine or other stimulants may cause you to have more PEM later (at least, that's been my experience).
I don't know much about how the system works in the UK, but there are members here who have been able to get government assistance when their ability to work has declined. As hard as it may be to think about it, I wonder if that might be worth looking into.
When you're so tired on your days off, I feel like it's your body's way of telling you that you truly need the rest. I'm curious: are you able to reduce your hours further? Or change the nature of some of your work so that you would be able to work from bed more? The fact that you have to rest so much on your days off makes me think that the amount of work you're currently doing might be more than your body can handle. For me, after I reduced my hours to a certain point, I found that I eventually became much more functional, both on days when I was working and on days off.
Unfortunately, there is no magic bullet right now. And sometimes things you can take that might make you feel more awake in the moment such as caffeine or other stimulants may cause you to have more PEM later (at least, that's been my experience).
I don't know much about how the system works in the UK, but there are members here who have been able to get government assistance when their ability to work has declined. As hard as it may be to think about it, I wonder if that might be worth looking into.
xebex
Senior Member
- Messages
- 840
There are some supplements that help and different people get better results from different supplements but ultimately rest and pacing is the main way to manage it.
There are some ways to improve your condition, stress reduction is one of them. This doesn’t mean that your condition is caused by stress it means that it is exacerbated by stress and that reducing stress is one of the only things we can control.
I’ve had a lot of improvement with stress reduction techniques but ultimately there is some other underlying stressor that is stopping me from progressing.
There are so many stressors in our lives from viruses, to food sensitivities to environmental sensitivity and beyond. Our bodies struggle to detox which is why diet is important and a good starting point, but is still not necessarily a fix. Some of us may only have one stressor and if we are lucky enough to find it and remove it we may see some big improvements, others have many and it’s a lot harder to figure them all out. There a lot of info in this forum, I hope you can find some relief.
There are some ways to improve your condition, stress reduction is one of them. This doesn’t mean that your condition is caused by stress it means that it is exacerbated by stress and that reducing stress is one of the only things we can control.
I’ve had a lot of improvement with stress reduction techniques but ultimately there is some other underlying stressor that is stopping me from progressing.
There are so many stressors in our lives from viruses, to food sensitivities to environmental sensitivity and beyond. Our bodies struggle to detox which is why diet is important and a good starting point, but is still not necessarily a fix. Some of us may only have one stressor and if we are lucky enough to find it and remove it we may see some big improvements, others have many and it’s a lot harder to figure them all out. There a lot of info in this forum, I hope you can find some relief.
I think that's an important statement for ME. Some people do find improvements for one or more symptoms without affecting other symptoms, so it's not an effective treatment for ME in other people. Also, it's not just stressors, there are individual biases as well. Something that enhances immune system function might be considered a good thing for a healthy person, but it can mean that a PWME responds to factors that a healthy person wouldn't. Something that enhances nutrient absorption might be good for healthy people, but bad for some PWME. We have to experiment individually to figure out what factors affect our ME.
One experiment is to minimize the types of molecules entering the body. A diet of sugar or cornstarch for some length of time would help figure out if something in your regular diet is worsening your symptoms, or if something in your regular diet is helping you feel better than you otherwise would. Some sort of bulking agent lacking in other chemicals might make the diet more comfortable. Microcellulose might work. I'm not sure what psyllium contains, but it's probably a better choice for most people than bran.
Another experiment is to change your environment if you can. Live somewhere else for at least a few days; maybe there's something in your environment that is affecting you. Also, try changing your schedule, in case something you always do at a certain time of day is a factor. It can be difficult to figure out what affects one's ME, but it can help.
Mary
Moderator Resource
- Messages
- 17,376
- Location
- Southern California
@Wendi - when I developed ME/CFS (it was over a period of years), I kept working and pushing myself as much as I could, for as long as I could. In retrospect, I wish I had paid more attention to what my body was telling me. I've often wondered if I could have avoided the onset of ME/CFS - which for me means PEM, or crashing - if I had listened to my body and quit pushing when it obviously needed help and rest. I kept getting the image of a car (my body) which was run into the ground.
Anyways, if there's any way for you not to work or to work less, not to have to push yourself, I think that might be best way to go. I don't think there's a magic pill which will restore your energy and health.
In another post you said you didn't want information about supplements. Well, supplements are the only things which have improved my energy and stamina, though I haven't recovered. There are so many supplements and sometimes I think I've tried them all, until I find a new one which I haven't tried, and which actually helps me. So I wouldn't write them off. Some of the major ones which help me are branched chain amino acids (5000 mg a day). thiamine (which caused my body to need more phosphorous so now take monosodium phosphate), B12, methylfolate (which caused my body to need more potassium so now take a potassium supplement), vitamin B6 in the form of P-5-P, d-ribose. Also a supplement called Cellfood is also helping my energy.
Anyways, if there's any way for you not to work or to work less, not to have to push yourself, I think that might be best way to go. I don't think there's a magic pill which will restore your energy and health.
In another post you said you didn't want information about supplements. Well, supplements are the only things which have improved my energy and stamina, though I haven't recovered. There are so many supplements and sometimes I think I've tried them all, until I find a new one which I haven't tried, and which actually helps me. So I wouldn't write them off. Some of the major ones which help me are branched chain amino acids (5000 mg a day). thiamine (which caused my body to need more phosphorous so now take monosodium phosphate), B12, methylfolate (which caused my body to need more potassium so now take a potassium supplement), vitamin B6 in the form of P-5-P, d-ribose. Also a supplement called Cellfood is also helping my energy.