Diagnosed at 25 with CFS losing all hope

[digital dog]

You might not have CFS/ME. You might have just got sick from the stomach virus and be taking a long time to recover.
I wouldnt necessarily take a doctors word as gospel. They will only ever see what they want to see (their specialised field).
I would stay away from ALL drugs and rest for the next six months and see where it takes you. If you go on antidepressants or benzos you will be digging a much bigger hole.
There is a good chance you will simply get better!

 

[digital dog]

Perhaps try LDN for your immune system. I would keep WELL AWAY from drugs. Your future self will thank you for it.

 

[Cheesus]

You might not have CFS/ME. You might have just got sick from the stomach virus and be taking a long time to recover.

This is a good point. A diagnosis of ME requires that the sickness persists for 6 months prior to diagnosis, and it is not clear if you yet fulfil that (as the real downward slide appears to have begun once you reached university in June). Moreover, many people with post-viral fatigue syndrome have fatigue that persists for longer than 6 months, and can in some cases last for a few years.

I think it is too early to be certain of your diagnosis. Just look after yourself well and you might find you regain your health over the next 6 to 12 months or so.

 

[Elatan]

I'm 26; I've been sick since I was 22. I have a few things to say about your (our) situation.

1. There is a better chance of remission in in the first few years. One of the biggest mistakes I made in the early years was that I tried to constantly push through everything. I simply did not get enough rest and tried to always put on a brave face, but I believe that by pushing I was damaging my prospects for recovery. This is even more irritating as I was always on an upwards trajectory in the first couple of years but I had a few big crashes from pushing really hard and my ability to improve evaporated. If you really focus on pacing now rather than trying to push your way through then you might regain a decent level of functioning if not remission.

2. Help is on the way. There are a number of sad stories from people on this thread and the wider forum about being ill for most of their lives: 20, 30 or even 40 years. But times are changing rapidly. These poor souls were living through the dark ages of ME, but you and I are very fortunate to have developed the illness in an era where ME is being taken seriously by the scientific community. Lipkin reckons he can get to the bottom of this in 3 to 5 years time (if he can get the funding). The history of ME is not a good indicator of the future of ME. We will not have to make wild guesses at what treatent might help. We are not destined to live for decades with a forgotten illness. We are not doomed. You will be able to marry, have kids, get a good job and more.

3. The early years were the most emotionally draining. I can quite vividly remember lying in a ball on the floor of my kitchen crying my eyes out. I can't remember what preceded that moment, but I was suddenly overcome by my situation and slumped to the ground in tears. I lay in the foetal position wailing like someone recently bereaved (and in a way I was bereaved). But things have gotten much easier over the years. The illness does not seem like the heavy weight that it was back then. I am quite content with my life in a way (though I will never lose sight of my goal of health).

4. It seems like your life has come to halt, but it hasn't. This may seem like a dreary prospect - after all it this entire point that life seems like it is slipping away that makes this so painful - but the point I am making is that the life experience you get from this disease is like nothing else. How many people have to face something like this during their lives? Fortunately it is quite few. The upshot of the experience is a rock-solid personal philosophy that can endure any of the shit life flings at you. Having been through what I have been through, I know that when I come out the other side of this my relationships with others will be enhanced and my knowledge of the human condition will have deepened enormously. Getting this sick really strips away the nonesense that most people concern themselves with in life. I now know that the only really important things are fresh air, good health and other people. It can be unbelievably tough, but a valuable life lesson nonetheless.

Thank you so much for your response. I know there are a lot of people out there who get this at our age, and even kids who get it. It's definitely rough. I feel for you! If you ever want someone to talk to - I'm here

One thing I suppose that worked in my favor is because I had to drop out of school I have no reason right now to push myself. I quit my job to go to med school full time (and working is completely out of the question right now), and CFS struck right before I started school, so there was NO way I could begin at my worst physical health of my life. Now, I'm really forced to rest. I'm really trying to stay in my energy envelope to give my body the time I need to heal. I feel like I recently made this decision to go into hibernation. I need to stop pushing myself to pretend to be well, because I'm not! It becomes exhausting putting on a happy face for everyone when it just isn't how you're feeling.

I guess right now I'm in such the beginning stages that I am kind of going through an emotional rollercoaster, and just as you said its so draining. You're description of lying in a ball on the floor crying your eyes out is one that I can really relate with. I've been there a lot and it is draining and rough. I try to stay positive, as much as anyone can, but when family members/friends are constantly asking "are you better yet" it pushes you to a breaking point. I'm happy to hear this feeling starts to dissipate, and I have my moments where I have a lot of optimism, and some where I have none at all. Pushing through those times is the toughest, but I'm thankfully starting to have less of those days.

This whole experience has already made me appreciate what is truly important - and everything else just melts away. I think that anyone who goes through this gets a check on that and there is no way to avoid it. I really admire your positive outlook on everything and I really hope I'll adopt that one day as well. Wishing you all the best in your recovery!

 

[Elatan]

This is a good point. A diagnosis of ME requires that the sickness persists for 6 months prior to diagnosis, and it is not clear if you yet fulfil that (as the real downward slide appears to have begun once you reached university in June). Moreover, many people with post-viral fatigue syndrome have fatigue that persists for longer than 6 months, and can in some cases last for a few years.

I think it is too early to be certain of your diagnosis. Just look after yourself well and you might find you regain your health over the next 6 to 12 months or so.

I was thinking this as well. As soon as I stepped into Dr. Levine's office it was like "your mom has CFS so you must have it too." I guess she's counting from when I came in to see her back in my early teens until now, but that's wrong to assume. I went to see her when I was having issues with my IBS getting flared up after having mono (my health has never been perfect) because my mom knew her so well she wanted me to go and get checked, which was warranted. But I wasn't sick since I was 16. I went to college full-time, worked full-time. I was in generally good to great health up until this happened.

I had very bad PEM a few days ago after pushing myself to spend the day out with family (almost 8 hours out). Such a mistake. I felt almost as if I had the worst hangover of my life combined with the flu. Achey and painful joints, feverish feeling with no fever, extreme fatigue, just felt like I got hit by a truck. This makes me suspicious its CFS, but again it really hasn't been 6 months yet.

Thank you for all of your input I can't tell you how much I appreciate it!

 

[Cheesus]

Well certainly what you describe of your PEM is in line with ME, but as far as I know it is also in line with PVFS. It is not clear at the moment how distinct PVFS and ME are in terms of biology, other than in the former patients typically return to health whereas in the latter patients can linger in this state of ill-health for much longer. I do know that a number of people who develop PVFS and recover will then go on to develop ME later in their lives - myself included (and maybe you too judging by your earlier brush with mono...?) - so it could be that there is a high degree of overlap in pathophysiology hence the difficulty in distinguishing between the two.

Whilst Dr Levine does immediately bypass the PVFS diagnosis in favour of a diagnosis of ME, she also suggests you might experience a fairly prompt remission, so her prognosis is actually in line with PVFS. I think there is cause to be optimistic that you could stage a relatively decent recovery in the early days if, as I say, you take the correct actions now. I understand that you have managed to go into "hibernation" as it were (no doubt you have seen reports of recent research suggest this may actually be a good analogy for ME sufferers), but your 8-hour day out suggests you're maybe not quite as careful as you could be.

It is a difficult lesson to learn, and I did not really understand pacing in the early days. Frequent rest-breaks are key. You ought to end the day feeling like you haven't hit your energy limit; you need to have something left over. Symptoms are signs from your body, and if your activity is causing you symptoms then it is a sign you need to stop the activity. You need to plan ahead. Just because you felt okay to do something yesterday does not mean that you can also do it today. I pushed myself too many times simply because I said to myself "Well I did this last week so I can do it now," but the reality is that the condition fluctuates and your activity management must be reactive to those fluctuations. Your progress will never be linear.

 

[valentinelynx]

Welcome. FWIW, I went through medical school with CFS (or tick borne disease...). I got sick about 1 1/2 years before starting medical school, and denial allowed me to plow ahead. First 2 years were OK, being mostly sitting in lectures. Unfortunately, I hit a wall while on my clinical rotations in 3rd year. Fortunately, my dean was great, and allowed me to extend my time in medical school by 2 years—I'd do a rotation and take a break for 2 months.

I was very lucky somehow, and went into remission (~85%) in time to complete internship and residency without time off (which might have been impossible to arrange). I couldn't do anything but work—no socializing or fun on weekends or anything like a normal person, but I got through it.

Whether it was good idea to do it is another question. Probably would have been much better off now if I had shut down completely upon getting sick, rather than exercising denial and pushing, pushing, pushing. Did I do permanent damage? Would I now not have a damaged immune system, autonomic system, severe chronic pain, etc. had I given my body the rest it wanted? And then, there's the question of tick borne disease—very likely in my case, although hard to prove after over 20 years. A few months of antibiotics at the beginning might have been all I needed (and rest, rest, rest).

My recommendation: do whatever it takes to get better now, and you will have a brighter future. Fighting through medical school (or whatever thing it is denial lets you do ) may just lead to you crashing just when you are ready to reap the rewards of your labor, like happened to me.

Be kind and gentle to yourself.

Wow, I wrote this a few days ago, and just discovered I never posted it!