The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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CFS/overtraining

Discussion in 'General ME/CFS Discussion' started by Little running man, Dec 27, 2015.

  1. Little running man

    Little running man

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    ME/OTS
    I'm a keen runner 60-70m a week is normal.

    On 17 March 2015 I got a sore throat 3 days before a race and felt fatigued ( I put it down to training hard) 3 days later a little tired but ok I raced 20 miles (a regular distance for me) and felt good and had a good race followed by sore throat and fatigue on and off in 3-5 day cycles ...then ran a sub 3 hour marathon (felt harder than it should but a decent run) followed by fatigue/sore throat on/off for a couple of months.... I saw the dr, had loads of bloods done ....WBC was low and dropped each test then in October it returned to normal (virus was the diagnosis) I felt fine a week before and a week after the last test and had returned running then hit a wall again sore throat returned (constant now) and the fatigue also. I decided to take a month out of training (still feel tired/lathargic) then I ran a slow 2 mile and woke on the Friday morning with my throat feeling awful and it returned to the normal sore/swollen feeling today (Saturday)

    My symptoms are

    • sore throat
    •tiredness fatigue
    • sensitive eyes to sunlight
    • hearing has changed
    • I feel the cold more
    • decreased sex drive
    • frequent urination
    • mood swings
    •loss of concentration
    • low pulse 41-47 bpm

    My dr has referred me to a fatigue clinic but I'm hoping he'll explore OTS/adrenal fatigue....but reading this it sounds like my symptoms plus The run/crash cycle seems similar.

    Can you help or advice what I can do please?

    Thanks Gary
     
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  2. minkeygirl

    minkeygirl But I Look So Good.

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    Have you been tested for specific viruses? EBV, CMV, HHV6? that might be a place to investigate.

    You also didn't say where you are. That will help others. In the mean time I strongly urge you to rest, rest and more rest. it sounds like you are over doing it and will not help you in the long run.
     
  3. Little running man

    Little running man

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    I'm in Cambridgeshire England. (I'm assuming this isn't just a uk site?) I'm 46 and male.

    No I've been tested for none of those. I started with normal blood tests and as my white blood count was low they repeated then and it had dropped again. They repeated the tests with the same result. I was then referred to the hospital (heomotology) who did more tests with no result but my WBC returned to normal so she diagnosed a virus. That was as far as she was interested and I was discharged from her care.

    I returned to training but after a week/10 days I crashed again. So I've been resting.

    I've now run yesterday and today (only 4.5m each time). But as my throat is still feeling sore (9 months now) I know I'm just waiting for it to happen again. I'm very frustrated and I hate that I'm putting on weight. However I'm no closer to a diagnosis! If it's OTS/adrenal fatigue I need to rest. If it's CFS I'm assuming I can run if I feel up to it and rest if not?

    It's all a bit above me to be honest and I don't know what to do for the best.
     
  4. Little running man

    Little running man

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    Basically I'm interested if others have the sore throat/fatigue issues with CFS or If I'm barking up the wrong tree....the problem I have is my symptoms (I have alot of the cfs symptoms) but the symptoms seem to be the same for lots of conditions and it's very confusing.

    Also I don't seem to be getting anywhere with my doctor.
     
  5. TiredSam

    TiredSam The wise nematode hibernates

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    If it's CFS I would strongly advise not running at all any more, even if you feel up to it. I got CFS when I was 47 and very sporty (49 now). Like you I did sport, crashed, waited until I felt better (a few days or weeks), did sport again. There's quite a body of anecdotal evidence that if you keep going back to sport in the early years you can make your CFS permanently worse and decrease your chances of ever recovering. If it's CFS chances are you'll have to stop doing sport eventually anyway, so you might as well stop now to try and maintain your current level of activity rather than keep doing sport and making yourself worse. If you're worried about putting on weight, you'll just have to regulate it with diet from now on.

    Does the fatigue come during sport, or straight after, or the next day? With CFS typically there's a delay of up to 48 hours after doing sport before the fatigue hits (it used to be the next day for me).
     
    Last edited: Dec 28, 2015
  6. Little running man

    Little running man

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    I find that I'm ok the next day just feel tired but after 3-4 days I seem to feel real fatigue.

    Originally I was getting a sore throat/fatigue for 3 days then the sore throat would go and I'd run for 5 days ir so before the sore throat returned and the fatigue with it. This cycle continued for months.

    For the last 6-7 weeks the sore throat has been constant but the fatigue has improved. (But no excercise) .....but obviously unless I return to running I have no idea if the rest has helped. Though the throat is a indication that it hasn't improved.

    None of the Drs (5) I've spoken to have placed any interest in the throat symptoms (other than looking at throat, which looks fine and feeling my glands) even though I've constantly highlighted it.

    I found during running/cycling I tire quicker than I should at the pace/distance that point it occurs.

    Thankyou for the time you've spent replying. It's appreciated
     
  7. Little running man

    Little running man

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    Tired Sam, if you were sporty did you/your dr consider overtrained syndrome/adrenal fatigue?

    I'm interested in what they tested you for and how they decided it was CFS.

    Maybe I could then prod my dr in the right direction?

    Obviously I'd rather it was something treatable as I just want to get back to my running/cycling. But prompt diagnosis would help I believe?
     
  8. helen1

    helen1 Senior Member

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    @Little running man You're playing with fire by running. You risk getting much worse by exercising especially aerobic exercise if you have me cfs. Even if you don't have me cfs let's say you have an active infection which it sounds like you have then aerobic exercise is still a risk for your health.

    Do you think you have postexertional malaise (PEM)? I.e. How do you feel the day after you run or two days after? Feeling worse after pushing yourself, often delayed a day or 2 or more, seems to be the most common symptom among those with ME CFS.

    Edit: oops sorry just reread the part where you describe experiencing PEM. In that case I strongly urge you to stop exercising or the chance of getting worse is very real. perhaps others can chime in to convince this runner to exercise caution so he doesn't go downhill like so many of us have from overdoing.

    If I sound abrupt and dire my apologies. just trying to save you from the consequences of this mistake many of us have made including myself.
     
    Last edited: Dec 27, 2015
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  9. BurnA

    BurnA Senior Member

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    Hi,
    My onset of cfs / me sounds very similar to your story. There are a few other threads on this topic so it's worth reading them .

    I had a sore throat for a few days but no other symptoms, then I went on a tough cycle. After this I felt awful - throat was worst I have ever experienced. I rested for two weeks thinking I'd be ok but after another spin on the bike felt awful again. After another week I felt fine so back on bike. However this time I woke up and felt tired like I have never felt tired before - every part of my body was tired and I couldn't get out of bed. At this stage I thought it was just overtraining and or a virus.

    However I never improved and after many tests which showed nothing I have been diagnosed with cfs /me. I also have POTS now.

    I would say to you, just rest rest and rest. Nothing is worth cfs, so even if you are getting unfit or gaining weight these are small problems compared to cfs.
    If sore throat is your only symptom it might not be too bad but just rest for now and see. If you can live a normal life apart from when you run then just give up running and enjoy the other parts of your life. This might sound awful to you but there are many ( most ?) who have to give up work because of cfs/me so bear this in mind.
     
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  10. Little running man

    Little running man

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    I'll stop the running/cycling again then until the Drs work something out

    When I exercise I find my speeds/pace worse than they should be. After exercise I'm tired but each day I run it seems my performance declines. After a rest of 3-4 days rest I start again and it improves again slightly until i crash again.

    Yesterday other than being unfit I felt fine and today was better (though I had a little sleep after) but it's a question of if I continued for a week running I'm thinking is crash and suffer real fatigue again. Though without testing this theory it's hard to know. Before my 5 weeks rest it was 3 days of severe fatigue before I improved.

    When I felt really fatigued I found it hard to get out of bed but now I've stopped exercise for 5 weeks I have days where I feel tired/lathargic/no interest but I can gee myself up to get things done. So I do feel better (fatigue wise) without exercise but mentally I hate it.
     
  11. TiredSam

    TiredSam The wise nematode hibernates

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    I didn't have the throat thing, my CFS started with stabbing kidney pains. Of course I saw a urologist, who found nothing, so I waited a few weeks until I felt fine again, then restarted sport, and they came back. Then I had a bout of flu-like symptoms with headache and exhaustion for about 6 weeks, and recurring fatigue thereafter. Because the fatigue was delayed, I didn't link it to sport for about 9 months I think. I just thought I had "something", so stopped doing sport and waited for it to go away, and when it did I restarted sport. Then the "something" came back, but I didn't connect it to restarting sport.

    Finally, after resting and being symptom-free for a month, I did sport again and crashed the next day, so I made the connection.

    In that time I went to see two Drs, who did all the usual blood tests, even had an MRT scan of my head, saw and endocrinologist etc. As is typically the case with CFS, all these tests came back normal. I still don't have a diagnosis, and as there is no standard biomarker and most Drs don't have a clue about CFS, I ended up diagnosing myself and getting into pacing, which has helped me cope enormously. I found this site very useful:

    http://www.cfidsselfhelp.org/

    I'm now due to go to a CFS clinic in May, which will be 2.5 years since onset. To get an appointment I had to do a lot of exclusionary tests locally for other things it could be, ie heart (but don't get on the exercise bike!), sleep test, see a psychiatrist, endoscopy etc.

    I don't think there's much Drs can do for me at the moment, so it's a question of trying to maintain my current level of health by pacing, and sitting it out for 3-5 years until medical research catches up and there may be better treatments or even a cure. I can work 15 hours a week, but have had to virtually cancel my social life and hobbies. I'm one of the lucky ones. In your postition I'd concentrate on educating yourself as much as possible, starting with pacing, to have the best chance of maintaining your current level of health.

    And definitely what helen1 said - sport is playing with fire. One of the hardest things is getting used to resting / not doing stuff even when you feel well enough to do it, but the less you do and the more you rest the better.
     
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  12. Little running man

    Little running man

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    BurnA

    .....sounds exactly like me! I put it down to marathon training. Nobody seemed to understand how I felt which is frustrating. When you are really active it sucks when you know something is wrong but can't get a answer! It's been a frustrating 9 months tbh.

    How did they diagnose you?
     
  13. lansbergen

    lansbergen Senior Member

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    For me that raises a red flag. Try to stay within your limits.
     
  14. BurnA

    BurnA Senior Member

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    It sounds familiar to me.
    Just rest and take things very easy for the next few months. If symptoms improve then maybe it is overtraining. But this is not something you want to prove or disprove. Time will tell exactly what the problem is. There is no test for overtraining or for cfs so doctors won't be able to tell you definitely. Wait, rest and see.
     
  15. minkeygirl

    minkeygirl But I Look So Good.

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    @Little running man if you're doc said the original thing was viral, then find out what viruses. As @helen1 said, if this is the onset of CFS, and no one can tell you, anything you do is going to really mess you up.

    You are doing what is known as push/crash and that is the worst thing for us. Look into PEM, Post exertional malaise. All because you feel better 2 days later doesn't mean that's good. A healthy person would be recovered the next day.

    There have been several posts here over the last few months about people exercising and running and everyone of them was told to stop. Athletes really struggle with having to give up doing stuff, but you have to look at long term vs. immediate gratification.

    @Hip has put this Road Map together. CFS is diagnosed when everything else has been excluded. I urge you to understand this as most docs don't. You are your own best advocate.

    http://forums.phoenixrising.me/inde...admap-for-me-cfs-testing-and-treatment.31641/
     
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  16. Little running man

    Little running man

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    Just found the reply button Thanks for the info. that helps a lot and is food for thought.
     
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  17. Little running man

    Little running man

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    I'll check out @Hip thankyou
     
  18. Little running man

    Little running man

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    Thanks for the info Sam.
     
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  19. Little running man

    Little running man

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    It's hard to stop the sport isn't it? But thanks and I wish you luck at the clinic.
     
    TiredSam likes this.
  20. BurnA

    BurnA Senior Member

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    Read these too...

    http://forums.phoenixrising.me/index.php?threads/onset-associated-with-exercise.39910/

    http://forums.phoenixrising.me/index.php?threads/role-of-overstress-in-cfs.41910/

    I diagnosed myself from my symptoms after all my tests came back negative. Then I went to an immunologist and a cardiologist ( who mentioned she sees this in marathon runners )

    This is a topic which interests me but there doesn't seem to be any evidence of a link between exercise and onset even though many people do seem to report it.

     

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