Starting to deal with chronic fatigue

When you say "chronic fatigue," I'm assuming you mean ME/CFS. Because chronic fatigue alone can result from many different illnesses. Of course, there's currently no test for ME/CFS. In case you do have ME/CFS, exercise can make the condition a whole lot worse. When I first got diagnosed, my doctor had me go the the gym and put me on a treadmill. As a result, I went from being mildly ill to housebound. The best way to deal with ME/CFS is to get plenty of rest and pace yourself. Do NOT push beyond your energy envelope, because you may lessen your chances for a recovery the more times you crash from overdoing it. Caffeine is absolutely contraindicated for this disease, as is alcohol. Also, stress can exacerbate the illness. By the way, a red flag for ME/CFS is post-exertional malaise. That is, when you do an activity, do you get fatigued beyond what would be considered normal? 

Hi Jess,

As Jackie says, more exercise is counterproductive. That doesn't mean you can't do anything just pace what you are doing. Managing rest is key. In regards your holiday, take things at a gentle pace. Rest when you need to and explain to your partner what cfs/me means. I didn't cut back in the early days before i knew how important balancing my energy was. It feels a bit of a dream and the energy i did get i would use up not realising that payback is a big part of managing your energy with cfs/me.

How did you come to have this condition and for how long? Recovery does happen and the shorter the period of time you have had it seems to be more likely. If you're in England, the waiting list for the cfs/me service can be quite long but, they will give you information to help.

Beverley

Hi Jess,, did you have a virus that set it off ?,, to my knowledge there is no test for cfs ,, i think i had glandularfever, i tested positive that ive had it but they dont know when ,,,only i do know when ,,if you know i mean ,, its not the only way you can cfs though , i really hope you feel better soon ,but if this is what it is you will need to prepare yourself mentally and physically by noticing what whacks you and try to find a way to pace. Thankfully you dont seem to have it too bad ,,i was in a whhel chair and bedbound for 2 years ,,BUT I BELIEVE in a full recovery,, Take it easy on your holiday ,rest sun and no stress will do wonders! Guava

 

Oh, yeah, caffeine will make things worse because my understanding from what I've experienced is that the body has been overstimulated for so long that the adrenals are crashing. More caffeine (or anything stimulating) is like whipping a tired race horse. Gentle exercise might better for now. Also, if you're going downhill with this job, pay attention. I stayed with a new job for 4 years because I was desperate for money and just pushed through it everyday even tho my body was clearly telling me it was too much for me and I deeply regret it. If we don't listen to the body say "NO" it will find a way to say no for us. It's our body's way of saving our lives.

It's a strange feeling when you're disappointed that your test results come back fine because then you have no answer, no place to start, and no hope. Likely, for the 10th+ time. For me it is difficult because I know the chronic fatigue is real. We know how real it is and how unpleasant we feel, but to those around us we look fine. Or maybe they think it's all in our heads. I personally isolate myself from others more and more because I feel as if I cannot relate to them. I hope you find answers soon. One starting place may be to test and see if you have MTHFR gene mutation. I am homozygous for MTHFR C677T. I'm trying to see if supplementing for it will help. I cut out gluten and dairy a long time ago. I don't feel better necessarily, but I know I feel much worse when I do have them. Dairy wrecks havoc on my stomach, and wheat makes me feel more foggy and tired. Likely because of the Folate. I had some tests run on my liver recently and I believe it is not detoxifying/processing/doing it's job properly. I don't have the results as to why yet. I'm waiting for the additional tests to come back, but there is a correlation between the Liver and MTHFR. Aside from the gene thing, the Liver might be a good place to start because if it is functioning poorly, you can experience a host of symptoms. Fatigue being a main one. This is the umpteenth time I have started to put the puzzle together and get hopeful. I'm trying to be positive as I know a negative outlook makes this stuff worse, but I've been let down on the road of living healthy and taking supplements before. I'm healthier than MOST of my peers, yet I'm 28 and have felt like a tired old lady for most of my 20's. If You want to talk, message me. Maybe we have tidbits of info that could help each other. If you have any additional issues, like with anxiety, I am recently trying a new herbal supplement with some success, too.

Do you mean giving up caffeine hasn’t helped or that having it doesn’t help? I think you’ve got to take a holistic approach: try everything in all areas of your life! Try and get enough sleep, eat well, take supplements, look after your mental health, alter working hours if poss, pace yourself, take gentle exercise, see friends and family, give yourself time. Is your holiday an opportunity to relax or is it a sight seeing sort of holiday? Be realistic, don’t set yourself goals that are too high, slow your life down. There’s no magic bullet to make it all go away but things will slowly improve.

Thank you for all your comments. I'm not entirely convinced it is chronic fatigue, my doctor really rushed my appointment and said she's referring me for chronic fatigue after blood tests have come back clear. Exercise sometimes makes me feel better but sometimes makes me feel worse and I'm not a particularly ill person. I've changed my entire life style and I'm so physically drained all the time it makes me feel sick and light headed and sometimes I get muscle aches. I nap every evening which I can't seem to stop, it takes me a good hour an a half to wake up from the 15-30 minute nap I intend to have sometimes I can't wake up at all. I'm thinking of going private and getting a second opinion as I believe all the right tests have not been done. What do you guys think?

Hi Jess,

How did your symptoms begin ? The starting point can help to determine the cause. I used to be very active and since having cfs/me, in the early days mostly, have sometimes found some exercise-like swimming helped some times but not all. In your post it states you feel this too? However, payback can come days later and that's the bit to remember.

I know we're all different but, i was relieved to have cfs/me as an answer because all my tests came back normal, Mri scans too. I was in a car crash and was told it was just going to take time to feel better. I knew that i really wasn't on the normal recovery spectrum because i felt so wasted all the time for so long! It's like something got switched off. I can't work as i get so ill and physically can't walk alot of the time. Hope is the key. I loved my job and it has been very difficult to listen to my body and pull back on activity. When i don't, i have payback.

If you really don't believe it is cfs/me-ask for other tests. Liver function, thyroid, vitamin D, B12, lymes, are a few to request. It really does depend on how your symptoms started as to what it may be.

Good luck

Beverley