How to approach recovery?

[lowkey]

We don't know what can/should be done to promote recovery. There's just not good evidence, and personally I would advise against devoting a lot of time/energy/money to pursuing recovery when we do not have good evidence on how that can effectively be done. Personally, I would advise you to live your life as best you can, and keep your fingers crossed. If you're in the UK, it's entirely possible that your specialist is not trustworthy, but was promoting positive claims about recovery in order to 'reassure'/manipulate you.

I'd be interested in who you saw and what they said.

I really regret the time I spent pursuing recovery on the advice on my 'specialist' - it did nothing for my health, and just left me further from the life I wanted to be living with the limited health I had. Sorry for the negative post, but this is a bit close to my own negative experience. Hopefully your health will just improve naturally - a year is not that long to be ill (although I realise that it will not seem like it to you) and quite a lot of people can have a short bout of these sorts of symptoms before recoverying, with no good reason as to why.

I'm aware that there is no one way to recovery, but I would rather take a chance on something that has worked for others, than sit at home feeling as though my youth is passing me by.
I am from New Zealand. I think my specialist is a smart lady, but I think she is pretty close minded when it comes to CFS. Alot of what she preaches as gospel (diet/exercise) seems to me as likely (and unlikely) to help with recovery as with all the other schemes people attempt. I guess its just whether you get lucky. Thr way I see it, i'm more likely to strike gold and find somethin that helps me recover if I give a few things a go. I've spent this year doing nothing because I didn't want to crash and not be able to work etc. Now all that is removed from my life I am ready to really really try and get better.
I also recognise that a year is a miniscule time for CFS. However I am not ready to resign myself to this existence for 10, 20, 30 years. I may as well remain positive and see what my body has in store for me.I had a bad bout of glandular fever which left me ill for about 8 months a few years ago. I got through that, and was 100% recovered. I'm confident I can do it again.
I know its not simple, and i really wish it was, cause it is so unfair that so many of us have to suffer for so long in silence.

 

[Esther12]

Best of luck with whatever you decide, but I'd bear in mind that medical interventions/therapies have a possible cost as well as a possible benefit. There are a lot of people trying to make money from telling CFS patients that they have something which will help them recover - if there's not good evidence that the likely benefit outweighs the likely cost, that it's probably not worthwhile imo.

I don't think you should resign yourself to ill-health, but I would encourage you to remember that your youth, and your time/energy, is precious, even while your ill. Spending it on treatments with no good evidence of efficacy might not be the best use of it. Good luck.

 

[helen1]

I would definitely try some treatments, just do one at a time after extensive research. Listen and read but don't blindly follow the word of anyone, doctors or otherwise. Do your own research. Reading Hip's excellent Roadmap to Tests and Treatments would be a good start (he posted a link in this thread; not sure if you read it).

There are some people who have recovered (or go into remission - difficult to know which it is) from a variety of treatments and some from non treatments, just rest. Other people improve a lot but don't consider themselves recovered or remitted. Sadly many people continue to be ill...

I would be extremely cautious about any kind of aerobic exercise. Some people can lift weights a bit and stretch. I can plus some swimming though I keep my heart rate down.

 

[*GG*]

I do not mean running or weightlifting or anything. I mean small walks/stretching etc. When i was healthy i would play sports 4 days a week, and still be very active on the other 3.

Yeah, I was the same way. Could do 3 sports in one day. Wouldn't dare to try that now, actually, just could not do it!

GG

Edit: Think you will want to push your limits, would think going back to school is a lot of work, stressful, so you are going to need good "stamina". I know I cannot handle stress as well now.

Heard it said that whatever you can do, cut in 1/2. And I guess build off that, unless you keep crashing. Hopefully you can realize it from the pain and/or fatigue, before it gets to bad

 

[daisybell]

LDN is the thing that has made the biggest difference for me, I think. Feel free to message me privately if you want to - I'm also in NZ.

 

[taniaaust1]

I wouldn't feel right giving you any recommendation to exercise or not seeing you said you cant link your illness working to exercise etc and don't think you PEM (though as another said getting sicker after socialising is a kind of PEM).

"The specialist I saw in June (who diagnosed me) said that I should begin to exercise daily. Starting with a small bit, and very slowly increasing what I can do. My GP seconded this notion. What do you guys think? I can deal with a few days of feeling worse than usual following exercise,"

That's graded exercise therapy and certainly not recommended for anyone who has PEM to physical things but then once again you think you don't have that so who knows what would be the right thing for you to do. Laying a lot can give orthostatic intolerance issues so for some who don't PEM, exercise could well be right for them. (never exercise to the point it makes you unwell)

I'd personally with no physical PEM be reluctant to think of you having ME/CFS, its just too risky your issue could be something else.

 

[TiredSam]

I'm aware that there is no one way to recovery, but I would rather take a chance on something that has worked for others, than sit at home feeling as though my youth is passing me by.

It may be that sitting at home while a few years of your youth pass you by is your best bet for recovery.

It's a long time since I read the link below, but I remember that extreme resting was a large part of his plan:

http://www.recoveryfromcfs.org/

If your are supported by your parents, are young, have no responsibilities, and mild ME, you are probably in the best position anyone could be in to create the conditions for a possible recovery by doing nothing.

I can deal with a few days of feeling worse than usual following exercise, if it is going to have positive effects long-term.

In my first year of ME I kept going back to exercise and feeling worse than usual afterwards. I now wish I hadn't, I think it may have had negative effects long-term.

I was very sporty before I got ill, but every time I've tried to build back up slowly (by which I mean going for short, slow walks) I've just ended up crashing. I don't even try any more, I'm worried that such attempts could also make things worse for me long-term and reduce my basic threshold. When I do have phases of feeling better, it's usually been down to me doing a lot of nothing rather than doing something.

Lots of people seem to try experimenting and self-medicating, but there is a downside risk of getting it wrong and making yourself worse, or blowing all your available money on stuff that doesn't work. It's a risk that people with more severe ME are prepared to take, and I don't blame them. As I have mild-moderate ME and can just about feel ok as long as I don't do anything, I've decided to wait it out in the hope that some better treatments or maybe a cure could come along soon (3-5 years?). At the moment that means just about giving up any idea of continuing to have a social life, and working about 15 hours a week maximum. I expect that to be my life for the next few years, and will consider myself lucky if I can maintain that.

I also feel very lucky to have this illness now, at a time when I can hope that I will only lose a few years of my life to it before better treatments come along, rather than face decades of very little hope which has been the lot of so many who have gone before me.

Can you think of any hobbies or interests you can follow from your sofa while you sit it out? For me that has been computer programming, reading about maths and physics, and when that's too much, watching BBC documentaries on all kinds of stuff, with a stupid computer game going on the side. Quite a few people on here use their forced down-time to educate themselves on stuff that interests them from the sofa. If cognitive issues make that hard, then there are other things you could try, handicraft, art, whatever, I don't know much about that kind of thing but you might have an idea.

Best of luck to you whatever you decide.

 

[brenda]

@lowkey
I would advise you to concentrate on your diet ie getting as many nutrients in as possible via dried superfoods, whilst cutting out toxins including pesticides and mercury, fluoride, arsenic etc and products that do not nurture health which means most processed food and most likely gluten sugar and dairy.

Six months of that will give you the chance to observe what supplements will help without having to experiment and waste money.

Some have done the raw vegan diet and have reported a cure but they don't get a good reception here.

 

[Mij]

Did you find anything helped with those symptoms? mine wax and wane, but i can't figure out what makes them better or worse.

No. I've had it off and on for 24yrs.

 

[Valentijn]

The specialist I saw in June (who diagnosed me) said that I should begin to exercise daily. Starting with a small bit, and very slowly increasing what I can do. My GP seconded this notion. What do you guys think?

If your "specialist" thinks you have ME/CFS and should do GET, then your specialist is a moron who should not be treating ME/CFS patients. GET has never been shown to help ME/CFS patients in any objective manner. It does not help people to become more active, or to be able to get back to work, or to become more self-sufficient.

And a large majority of ME/CFS patients have reported that they find GET to be harmful, in large surveys done by ME/CFS charities.

I am getting a bit worried that I am spending too much time lying down, inside.

Should I try and lie down less?

Your symptoms seem pretty consistent with Orthostatic Intolerance (OI). Have you checked to see what your blood pressure and heart rate are doing when you feel like you need to lie down? Some forms of OI manifest immediately after standing up, but others can be delayed by minutes or hours. And some are simple to notice, if heart rate becomes very high, or blood pressure becomes very low, but doctors are not trained to look for other indications of OI, such as narrowing pulse pressure (the difference between systolic and diastolic).

If you don't have PEM, your specialist has misdiagnosed you. I'd strongly recommend checking your BP and heart rate at home, then insisting on assessment by a dysautonomia specialist if anything looks odd. OI can be detected pretty easily with the right equipment, and they can even figure out the cause sometimes if they bother to look. And it usually can be treated to some extent.

But in either case, your specialist is worse than useless. I wouldn't bother with such a doctor, unless you need him or her to get additional referrals, etc.