Has anyone here recovered from chronic fatigue?

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And if so how did you do it?

I just want to do something! I have been looking on line and different things are popping up. I am open to trying something but as it is all quite expensive I can't afford to try everything.

Just wondered if anyone here had any experiences that they could share or any suggestions.

You could try cutting out food containing lectins. Lots of blogs about it. Some think are implicated in things like CFS.

Oh not heard of that one, will google lectins.

My daughter has. From research that I did a few years ago the younger you get CFS/ME the more likely you are to be able to recover. She was diagnosed with CFS/ME when she was 14 and became severely affected. She was bedbound for 6 months, totally housebound for a year. At her worst she was unable to chew food or eat or drink without choking. Her feet would turn black due to the muscles just not working enough to return the blood back to her heart. She was the most severe case that her consultant had ever seen. But now she is 20 years old and coping really well. The recovery has been a long hard road, but we have got there!!! She started off by limiting the amount of time that she slept. She had been sleeping up to 23 hours a day, but this had to be reduced down to 9 hours. She had a pacing programme which we religiously followed for months and she could see progress with that. CBT was rubbish and more stressful than anything else!!! It was just a case of monitoring energy usage and gently gently increasing this. Not expecting too much too quickly and if that meant that she stayed at the same level for weeks at a time we just kept persevering.

Other people we knew had amazing results from the Lightning Programme, but we could never have afforded it and felt that it was not right for DD.

You can recover from this illness, don't let it suck the life out of you. Good luck.

It's CBT that I have started but I am not sure it is enough. I want to be proactive though. I wondered about things like acupuncture, EFT, NLP, hypnotherapy etc, but no idea what to try.

Yes, a friend had ME... She did the Lightning Process, and recovered immediately. It was astonishing to see.

Also so glad she is on the mend! Luckily my symptoms were never as severe as that but I don't want this hanging over my head for the rest of my life, I want to be active and well.

I want to get the balance right between pushing myself on and not setting myself back.

I suspect that treatment is beyond what I can afford unfortunately.

I would say that your mental attitude towards this horrible illness is your best medicine, too. If you want to recover and are prepared to work at it, then you can and will do it. I know it is very hard and I am not saying that the illness is all in your mind at all......No way is it, it is horrible!! You definitely need to know your limits, too. If you push yourself too hard, then you will only go backwards. It is such a fine balance.

CBT worked with some people we have had contact with. Does your therapist understand ME? The one DD had was clueless and was just following some guidelines, but some of her advise was totally inappropriate for a young teenager. we ended up refusing to have her come to the house as she caused too much stress, which had such a negative response. DD had a most wonderful consultant who was so supportive all the way through and really listened to our views and encouraged us to be as proactive as we wanted to be.

Have you actually got CFS? That would be my first question.

What tests have you had?

I'm always a bit sceptical because I was diagnosed with CFS three times in 2009/10 when it was actually quite clear from my blood test results that I was hypothyroid with vitamin D and ferritin deficiencies and low folate and vitamin B12.

Since I sorted out the vitamins and minerals and got treatment for the hypothyroidism, I've been fine.

You owe it to yourself to be very sure of your diagnosis.

Had all the blood tests done twice, scan on my throat and a camera up my nose to look at my throat, referred to a throat specialist. Main point of pain is in my throat along with flu type feeling, achey body, nausea and needing lots of extra rest. I can't exercise anymore although I used to be really active, now it makes me feel ill for days.

I would be happy if they found something, CFS feels like being put out on the scrap heap. I have had on going pain in my throat for a year and a half now, something has to be causing it, I would love an answer that as better than the one I am getting which is more or less we don't know.

Have you considered dietary changes? Take a look at deliciouslyella. She suffered from severe PoTS and treated herself by going vegan, see what you think...

Interesting website! I do eat a lot of eggs and fish so it would be a big jump. It does sound nice though.

It sounds like it was a huge jump for her too, but obviously worth it . The food looks amazing. There's a piece on her in this month's Red magazine. I definitely buy into the food as medicine theory - has to be worth a try I'd have thought, better than medication. Good luck .

Yes. Time, pacing, bit of CBT for the anxiety about activity that followed...

I was bedridden for 8 months, up and down for two years and about 75% for a year, now recovered

That gives me great hope to read! Initially I was told I would be better by last summer (occupational health) a year on I am a lot better than I was (I quit my teaching job though) but not where I want to be or how I used to be. My new dr said a couple of years but I just feel afraid by the vagueness of it all. What if she is wrong? Lots of people don't believe me, I pretend to be fine most of the time. I am ok at the moment as my youngest is home. When she starts school I will
Be under pressure to start work and that really scares me, having to work through not feeling well and what that could do to me.

I had CF for 2-3 years. I tried CBT and that didn't work, my doctor put me on an SSRI anti-depressant called Citalopram and that didn't work either.
But then I went for a private consultation and the doctor put me on an SNRI anti-depressant called Duloxetine and after a few months I was completely fine!

I have through change in lifestyle, diet and slowly built up exercise. Went pt at work after being signed off...slow process but we got there... support from dh (who only married months before cf started!!) Was essential.

My Friend struggled all through childhood and the lightening process helped her recently even though she was already on the road to recovery...

What diet changes did you make ikle?

I don't eat bread or pasta or meat. Diet is mostly eggs, fish, veggies. I do eat dairy, Greek yogurt, milk with porridge and dark chocolate. No coffee, can't drink any more beyond the odd small glass here and there.

I tried green smoothies for a while but they triggered my ibs.

I had a post viral fatigue thing and acupuncture worked for me

Some have been helped this way, looks like you are halfway on the diet already. Taking essential fatty acids helps me to think a bit more clearly.
last month's ME conference

My sister has it. She went gluten free, and avoids certain other foods ie peppers and tomatoes. There's a whole list of what veg and fruit is better for you and what can trigger setbacks. She's 95% better.

What kind of fish? I have an admittedly very cranky theory about the role of low level mercury poisoning in some (probably a very few) cases of apparent ME.

Tuna and salmon mainly, oh dear they would be high in mercury yes?

Tomatoes and peppers? Wow that has surprised me! Very interesting.

Will check out the links thank you.

Oh and which list did she use? Is it online somewhere? I love tomatoes, sad times.

I'm recovering, and have done absolutely nothing to make it happen.

I don't do things that make it worse, so lots of informal pacing, and I try to keep as fit as it allows (not very), but that's it.

I looked at a lot of the "treatments" when I was first ill, decided none had sufficient evidence in favour (inc the NHS-sponsored ones), and one could spend an awful lot of one's life damagingly and expensively chasing one's tail, and I would just manage it and wait to get better or for a more convincing treatment.

I also knew from checking around that "CFS/ME" is frequently self-limiting. So as Ben Goldacre points out, one could hang chicken entrails round one's neck and credit that with the cure of self-limiting condition.

Sorry if that's not what you want to hear. It's entirely likely that some therapies will help some people - not least because "CFS/ME" is a dustbin diagnosis at the moment, so we may all actually have different conditions. I just didn't choose to do the rounds of them myself (and have been vindicated by the latest generation of doctors going, "It's a good job you didn't take up X, it would have been harmful. Now do my magic therapy instead .")