Unas preguntas de alguien diagnosticado recientemente

Cerebro y nervios
1

Hello all,

After many trips to the doctor's office, many blood tests, and many naps, I have been diagnosed (tentatively) with CFS. The specialist could not give me a clinical diagnosis because I do not exactly meet the required standards, I have no bodily aches or pains, and my PEM is not extreme. I am still waiting on tests just to check it isn't related to my adrenals, but the specialist said she would be very surprised if it was.

Basically, every day for 7/8 months I've felt tired and had to limit my activities, and the specialist said it looks as though I have developed CFS, albeit a mild case.

I have a few questions to ask fellow sufferers etc, who probably understand the disease better than anyone in the world.

A) So if I just have a mild case, does that greaten my chances for complete recovery? Will I get better sooner than someone with a bad case? Or will I be effected for the same time period, just not as much?

I am a 20 year old male, who previously was very fit, healthy, and active.

B) Is alcohol safe to consume with CFS? My social life has been very limited in the last few months, and I have stayed clear of alcohol and marijuana. Are these things actually fine to consume in moderation with CFS?

C) How will I actually know if i'm getting better? I'm sure you guys know that feeling you have where  you never really consider you will ever feel different, and can't remember what it feels like to not be fatigued. When I was not ill, if I was tired, I always knew that after one good sleep i'd feel normal again. But know every night I go to sleep knowing there won't be a change in my condition. Is it easy to recognise once you are actually getting better?

D) When will I be able to play football again? I am a very keen footballer (soccer for any americans). I am very scared that even when I do recover, Playing football at a high level may trigger a relapse?

Thank you very much guys,

A

2

This is so difficult to reply to in every possible way my young friend. 

We all have it to varying degrees; some people get better and seeing as you're young you have a great chance of it with nutritious diet, enough rest as in listening to your body and not pushing it.  And some herbs really help.

3

A) So if I just have a mild case, does that greaten my chances for complete recovery? Will I get better sooner than someone with a bad case? Or will I be effected for the same time period, just not as much?

I am a 20 year old male, who previously was very fit, healthy, and active.

All cases are so different from my experience and what the CFS Dr I've seen has told me the younger, fitter and if you have it mild a full recovery is possible

B) Is alcohol safe to consume with CFS? My social life has been very limited in the last few months, and I have stayed clear of alcohol and marijuana. Are these things actually fine to consume in moderation with CFS?

C) How will I actually know if i'm getting better? I'm sure you guys know that feeling you have where  you never really consider you will ever feel different, and can't remember what it feels like to not be fatigued. When I was not ill, if I was tired, I always knew that after one good sleep i'd feel normal again. But know every night I go to sleep knowing there won't be a change in my condition. Is it easy to recognise once you are actually getting better?

I've had CFS for a couple of years now and drink only when I feel I can.  If I drink on a relapse it feels like I've drunk poison the next day.  Can't comment on the Mary J :-)

D) When will I be able to play football again? I am a very keen footballer (soccer for any americans). I am very scared that even when I do recover, Playing football at a high level may trigger a relapse?

You need to walk before you can run.  I would not reccomend playing football for a while.  You need to accept that you are ill and recovery could be months or years away.  Put the thoughts of exercise to the back of your mind - if you overdue it you'll be back to square one or worse.  When I first got ill (through over training) my Dr's suggested I carry on with my exercise (running and going to the gym) - this made me so much worse.

But 2 years on I can now play football and run but I have to be careful.

My main piece of advice is to accept that your life has changed and you need to take it easy.  I looked at all things in my life and addressed them as best I could - from getting better sleep, to even walking slower !  Listen to your body - if you feel tired then rest rest and rest some more :-)

4

The lack of PEM does make you a bit unusual, even for the wide range of people who seem to get lumped together for CFS. How is your sleep? Could you have some sort of sleep disorder? Hopefully whatever you have will improve.

A) Yeah, being young and mildly affected seems to correlate with improved prognosis. There's still a chance that you won't imporve, or will even get worse, but it seems that a lot of people (especially teens) go through a short period of symptoms like this and then recovers, while no-one knows why.

B) How do you feel with it? Lots of people with CFS react badly to alcohol. If you do not have typical CFS symptoms you may be okay with it though.

C) If you find yourself able to do a lot more stuff again, that would be a good hint. I wouldn't worry abou this.

D) At the moment, no-one knows what's wrong with you or can give firm claims about the future. You're just going to have to see how it goes.

5

I maybe similar to you in that my consultant said that although I had CFS it wasn't the most severe and the good news is that I am seriously on the mend, but how did I get here? Well to answer your questions

a. since its mild you don't have so far to go to recover. my mistake was not taking the condition seriously so I would boom (have lots of energy) then bust (spend ages fatigued) and that went on for about 5 yrs until I seriously started pacing myself and now some 16mths later I am really finding the benefit. Pacing had to be done pretty seriously. I don't bother with any of these faddy diets but I do try to eat healthy.

B. Why does being social mean drinking alcohol? You can go out with friends, just have a soft drink and the big bonus is you can be the designated driver. Some of the medication I was on, alcohol was a no no anyway. As for drugs like marijuana... don't get me started..... why frazzle your brain and waste your money on that rubbish and maybe end up in court for possessing an illegal substance?

C. Once you start pacing and set achievable goals it becomes obvious. I used cycling, started out at 10 mins and now I can cycle 30 miles, I use to be a 50mile a day cyclist. When I went a week with no relapse I knew it was progress. Then two weeks etc... get the idea. I also suffered with lots of brain fog so used games to help me there.

D. For me the big success has been controlling how I use my energy, that's what is nice about cycling I can do it when I want and for how long I want. The problem with football is you may not feel great at that moment in time. You also need to workout how long you can play before it affects you. How will the team feel if you come on for just 5 mins? If you find that doesn't causes any problems then you could try 10mins and so on. Personally I would get your energy levels back with some other form of exercise that you can control. Interestingly I played some football with the family, and I might be able to cycle 30 miles but a few minutes of football almost killed me off and I am really suffering today.

Start pacing, learn to say no, and begin by understanding just how much you can do without any adverse affect on you. Once you have that base line start working from there (I had many failed attempts, once I adopted this approach I found success)

best of luck

6

First, unfortunately, I've never read any stats about chances of recovery for different levels of illness. I know it's hard to live with uncertainty, but that's the reality. Since you're so young, though, I think you have a better chance of recovery. It's not advisable to consume alcohol with this illness. Also, avoid caffeine and sugar. I don't know about marijuana, but why push it? Better to be safe than sorry. You'll know when you're getting better. The post-exertional fatigue will ease up. Basically, you'll know when you're better when you feel better. Here's where overthinking the situation doesn't help. As to when you'll be able to play football again? No one can answer that for you. But pushing activity at the wrong time can cause relapse. You're very lucky to have a mild case of ME/CFS. Why take a chance on wrecking your health? Believe me, you don't want your symptoms to escalate.