Young guy wondering if it could be CFS?

Brain and nerves
1

Hi everyone, I am posting in hopes you can answer two questions (see below), but first some background on my situation: I've struggled with varying levels of fatigue since having mono 6 years ago. The fatigue got considerably worse last autumn. I keep a relatively regular sleep schedule (7-9 hrs per night), but there still isn’t a single day that I feel truly awake or alert. Some weekends, I can crash and sleep almost 48 hours straight, and that doesn’t help either.

Day-to-day, my only consistent symptoms are the extreme fatigue, poor focus, and fuzzy thoughts when trying to reason through things at work. One to three times a week, I’ll also get stiffness or weird aches (almost like growing pains) in my arms and legs that tend to be worse in the evening/bedtime. I’ll occasionally get dizzy spells, almost like I have low blood sugar, but they don’t happen every day. I did have really bad stomach problems (cramping, urgency, loose stools) for about 6 months, but they seem to have resolved on their own without any major changes on my part.

I've been to countless doctors trying to figure out what's wrong, and I am worried that I am heading towards a CFS diagnosis as more and more gets ruled out. So far I've had pretty comprehensive blood work checking my vitamin levels, hormone levels, and blood chemistry. Everything basically always seems to be in order--Vitamin D is sometimes borderline low, and WBC is often at the high end of normal or just barely over, but nothing major to remark on. Testosterone was low at one point and FSH / LH were extremely elevated; now testosterone is normal and FSH / LH are still quite elevated, but they’ve come down considerably. The endocrinologists say that there is no reason that this would cause my fatigue. I've even had a sleep study, which didn't really reveal anything either: sleep apnea index was just barely within normal range, but still normal. I’ve also been to the cardiologist and had my heart checked out; everything looked great.

So, I reach out to you with two questions--

1) At this point, what else should I have the doctors investigate? I don't want to leave any avenues unexplored. This is no way to go through life, especially when you’re only just shy of 30 years old...

2) Can someone with CFS handle regular physical activity? I thought a defining characteristic of the disorder was that physical activity worsens the fatigue. For me, physical activity neither helps nor hurts. Even on pretty bad days, I can still push myself through the fatigue and remain relatively active--for most of this year, I managed to run 3-4 times a week and even competed in several long distance events. I'm not saying that this sort of exercise is easy for me; it's often a major struggle, just like everything else I do. But I can still do it, and it doesn't seem to make things worse. Wouldn't this be pretty atypical for CFS, or am I mistaken?

2

Given all the tests that you've had done, including bloodwork, and given the symptoms you mention, I think chances are extremely high that you have ME/CFS. The only thing that is puzzling is the lack of post-exertional fatigue, although you mention pushing through the fatigue to do physical activity. What country do you live in? I think your next step should be to see a doctor that specializes in ME/CFS, preferably an infectious disease doctor, but a rheumatologist is good, too. I know some good doctors here in the U.S. Also, no matter what you have, but especially if you have ME/CFS, you're greatly increasing the chances of worsening the illness (or not getting better) by all your activity. You need to pace yourself and get lots of rest. I got progressively worse by thinking I could push through my fatigue. Now I'm housebound. You want to avoid that outcome.

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I am in the US right now, but I'll head back to Europe at some point. Thanks for your advice. I do hear what you're saying about pushing myself, especially if it is ME/CFS--but I've tried taking an entire month off exercise, was on 50% sick leave from work for 6 months, and all of this made no difference. I started getting pretty depressed from my lack of ability to do anything, so now I'm trying to ease back into things slowly (shorter walk/run combinations twice a week) but listening to my body.

4

Hi there,

I'm with Jackie, I tried too hard at the beginning to keep active too. Although I'm not completely housebound, there Is no way I can do what I could. Also a point to be raised here Is that the payback symptoms can appear up to a week later so, when you say the activity makes no difference, maybe you need to re-look at that? Yes, the resting is a total pain and most people on here were extremely active before they got this. You are not alone In your frustrations nor your desire to maintain 'business as usual' but, keeping at it seldom seems to help and often hinders or totally thwarts recovery. I cannot work at a job I truly loved and its hard to give things up, I know that. Well done for taking the six months off, but do consider that you may need more? Re the running etc, seriously consider the extra demand it puts on your system because if it is cfs/me all the literature points towards finding your baseline and then adding small amounts to get back to "normal" pacing is seen as the way forward.

Hope that helps

B

5

I realise how absurd it must sound when I say I am chronically sleepy and fatigued and at the same time insist that I am capable of physical activity. But that's been my reality for the past 6 years, including this last year when things got really bad. When I read accounts of how people with CFS crash after doing physical activity, that's just not me. I've experimented with lots of lifestyle changes over the past 6 years and have at times done extensive logging of my daily habits (exercise, sleep, food) to look for patterns, and there's nothing there--not on a day-to-day basis or with a lag.  I do hear what you're saying, and I know I may be setting myself up for a huge crash even though I've drastically scaled back the amount of activity I do. But I'm still hesitant to accept that this is CFS since the post-exertional malaise doesn't seem to fit. That's why I'm curious if everyone with CFS experiences that, or if some people are like me, and just have a relatively constant level of fatigue that doesn't get better or worse whether they rest or exert themselves. I was so confident it wasn't CFS and that the sleep study would show something, because the symptoms of a sleep disorder seemed to fit so much better in my mind--e.g., falling asleep in the movie theater, sometimes at my work desk, as a passenger in the car even on short trips. But like all other tests they run, nothing.

6

Hi there,

Yeah, I don't feel better with rest either? but, I don't force myself through the fatigue like I used to. I'm 3 years in and in the 1st year ridiculously managed a long walk feeling fine and then deliriously scrabling through the next few days exhausted and in pain and I continued to function. This was pre diagnosis. The more I have read the less I am inclined to force myself as I really don't want this for 30 years like many on here. Its a horrible, frustrating condition. It changes your life completely. I also have read alot of posts on here by people who don't want the cfs/me label. Who would? I also have kept the nhs (am In the UK) sleep /activity diary to see what I am doing to maybe not help the condition. They see mental activity as important as physical activity when looking at what you are doing. They also look at how you rest and how much you rest. Even though I rest, I am not resting how they believe is beneficial. Relaxation is one thing that I doubt many of us do. Graded exercise neither. I wake every morning like I've not slept. Everyday feels like its 3 in the morning. I wish that I too could find the right balance. If its work, family, or whatever the extra burdens are to our system, I strongly believe that we have to be gentle with ourselves. I'm not perfect, I find the balance difficult too. You state you get pain in your arms and legs and I wonder how you feel this is linked to your condition? I know my pain is linked to carrying things mainly. We are all different though. Did you get tested for lymes disease? From what I've read there are similar symptoms.

Hope this helps

B

7

Hi Jt23500

If I can offer only one piece of advice it would be to try and not get depressed by the fact that you cannot seem to function the way you once did.  To me it sounds like you have taken positive steps inorder to try and increase your energy levels. and that you are doing all that you can to improve the situation.  

Rest is essential, as well as drinking more water then you can physically consume.  This I find helps me get through the worst times. 

You really ort to get assessed properly. but if it helps you in anyway your not alone.  Mine started as post chemo fatigue, I am convinced that this was the root course. following treatment that ended in September 2014 I was left with feeling tiered 24/7 and with brain fog, until a few months ago, it was a mild irratant where I could no longer multi taks like the wind and as I once did.  I was able to run and keep kit which I did often. and able to live out a relatively normal life.  

2 months ago, was when everything changed for me. I went from mild to extremely severe over night and now live with a dibilitating condition.  I appreciate that many others have had the condition for years, and talking to people, reading their stories has helped  me release that this can happen to anyone and at anytime.  that is a fact which has helped me come to terms with what is going on. 

I do envy you having the energy to run.  although I've developed a new appreciation for slow walking and the ability to take in the world around me at a slower pass. 

I've been researching a great deal and although there's a lot of controversy with regards to what causes ME/CFS.  be it physical or psychological there are stories out there which supports both theries and I appreciate now that many cases will differ from one to the next with different reasons to why/how and when this started. The Trigger can be both viral and psychological or could just as easily be one or the other.

For me at least, I believe it was as a result of my treatment. furthermore I strongly believe that my immune system has been compromised reading up on Cytokines its at least plausible.  In the UK they are trialling an Autoimmue drug right now which I am very keen on hering the results of.  although could still be a loose end I am at least still hopeful :-) 

Hope you feel etter soon 

regards

Andy

 

 

8

Hi, they haven't checked me for Lyme's yet or a relapse of my mono (which I'm told can happen and might explain the worsening of my symptoms this year) or any autoimmune disorders (not sure if there are any that would fit my symptoms). I guess that's the next step. Though my bloodwork has been comprehensive, it's also been pretty routine--just the normal chem panel, hormones, and vitamins.

For me the hardest thing with the CFS diagnosis is that it's accepting you can never really be cured and you might never feel the same again; the best you can do is cope. I want to believe this isn't going to be a lifelong struggle, especially since my symptoms started when I was only 22. However, I have also come to realise that feeling as healthy as possible is the most important thing, and all these other things--running, work--are secondary to that.

I definitely know what you mean when you say "every day feels like it's 3 in the morning"--that's what I'm experiencing too. There's never a moment I feel alert or awake. As for the pain in the arms and legs, I'm not really sure if/how it's linked to my condition. It often comes at night and at rest. Sometimes it's only mild, other times it's pretty bad.

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Hi Andy, thanks for the encouraging words. I hope that you will also feel better soon. It's true that a very frustrating part of this illness is not understanding exactly what causes it. It sounds like the chemo could have been your trigger, and I'm wondering if mono 6 years ago was mine. But I'm not sure why it suddenly would have gotten worse last autumn, just as yours also went from mild to debilitating overnight.  Our bodies sure are mysterious...

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I'd happily trade my body right now for one that works. Wonder if they will have my size in the sales.

Lol

If only right...