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Do I have ME / CFS?

Posted , 5 users are following.

eli53877
eli53877

Hi all,

First - thank you for reading this. I would truly, truly appreciate any advice you guys could give me!

_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

I'm a 31 year old male. And basically- I'm exhausted a lot of the time.

A few years ago, I started getting headaches (particularly behind one eye) after seeing many neurologists (and being given three different rounds of medications) I finally saw a physiotherapist. He told me that I had cervigcogenic-neck problems; and, after a lot of physio, the headaches went away!

But then a year ago, I was doing a lot of sprinting. One day, after a hard sprinting session, I stood up to walk down the hallway- and my legs felt like jelly. I was diagnosed with having spondylolisthesis and a bulging disc. Ever since that day, I've not been able to walk for more than 5 minutes, or stand up for very long. 

But worse than that- since that day, I've been so, so tired!

-I don't really have mental fog, or pain and aches (apart from my bad back). 

-I am able to ride my bike 15 miles a day, (despite not being able to walk a few hundred metres), and I don't think I experience the 'crash' afterwards; my tiredness seems to persist wether I excercise or not.

-I can sleep 9 hours at night, and still be exhausted the next day! 

-I'm not even working at the moment because of not being able to walk properly- so not stressed about work or anything.

-I had the usual blood tests done- iron, b12, thyroid etc but they all came back normal.

-I get the feeling of having 'heavy arms' a lot of the time; and light things feel as if they weigh a lot more than they actually do.

-I'm a healthy weight.

-I have a bit of anxiety (which gets worse when I'm tired) and hayfever. At least- I think it's hayfever;  get sinus headaches (and blocked nose) every day for a couple of months each year.

 

Um, so that's about it. If anyone could give me their opinion or some advice, I would REALLY appreciate it!

Thank you so much,

Eli.

 

1 like, 16 replies

16 Replies

  • peter01102
    peter01102 eli53877

    Posted

    cfs blood rare they come up with any think .

    as to fit that wasnt me . but  only 30% get ltd and other 70% build up .

    eg sleep-moody-brain fog-depression .

    ur lucky as come the way it as . bike with me 10th of mile and im xyz`ed .b4 cfs and try with resuit was 2% of mile .

    weight control due to cfs i put on 3 stone as wasnt 1 for work out in 1st place .

    had for 10 cfs slow build up and at this time ltd what can do .

    diet/fresh air(sea air) helps but as to diet is mixed for any 1 with cfs .

  • peter01102
    peter01102 eli53877

    Posted

    oh ur have a best friend ur bed as sleep with me is few times a day 12+ hours /

    3-5 hours if lucjy at night and other in day 2-4 times need to go back for odd hour.  

  • andrew22534
    andrew22534 eli53877

    Posted

    Hi Eli, as a sprinter myself and asa sprints coach (level 4 sprints, perfomance, strength conditioning etc) the first query is what training programme do you have? are you getting in actual rest days? this is the most common mistake not allowing good (and i mean good) recovery days. Secondly eating if you are training quiet hard is your meal balanced (dont say healthy) ie in your case at present 1/2 a meal should be protein based.  if these are good then also get tested for lymes disease worth it to rule it out at least but is easy to pick up (i was suprised and my GP was quite shocked - i am waiting for my results but...) after that there are other things to explore, but lets have these answers first. on your symptoms sinus problems are a causal for ME/CFS (one of a few starting points including sore throats (also a symptom) headaches, chest bugs frequently or nasty ones IBS and fevery unwellness also feeling cold and hot and having no apparent self control of your own temperature) look on thyroid sites and get the full range of thyroid function tested. Nest on the list is cardio this is more tricky but stress that you are an elite athlete and want your heart checked over due to length of time training and fitness level, esp so if your heart rate is arounf the low 50's or high 40's shows good fitness but ... those are my first suggestions....  
    • eli53877
      eli53877 andrew22534

      Posted

      Hi Andrew,

      I'm not sure I understand. I don't have a 'training program' for sprinting- I've barely been able to walk for a year. I had to quit sprinting.

      -I can hardly stand up- I have spondylolisthesis (a slipped vertabrae in my back).

      -I'm not an athlete anymore. I ride my bike about 10 miles a day, but that's about it.

      -My meals are fine; a mix of protein, carbohydrates and fats. But again, I'm not an athlete.

      -My sinus symptoms happen every year, and didn't start this year until long after the tiredness began.

      -I live in Australia- Lyme disease doesn't really exist here.

      -I don't get chest bugs, or IBS, or fevers.

      -I had my thyroid function tested, and it was normal.

      - I had an EKG on my heart, and it showed that I had an enlarged left ventricle and bradycardia. But the doctor said that was fine, and perfectly normal for someone who was fit.

      I really appreciate your suggestions, though.

      Thanks. Eli.

       

    • peter01102
      peter01102 eli53877

      Posted

      quoke . andrew22534  .. i think he trying to sell u a problem for a fee .

      dont think he as cfs/me .

      we all get ltd of walking and moving make u extra sleepy due to the cfs.

      ((( quoke ... 

      There is no Lyme disease in Australia - FALSEThis is false. The misconception that Lyme disease does not exist in Australia is based on a study in 1994 by Russell and Doggett.  There were numerous problems with this study and it’s methodology, which are the focus of an upcoming article in the Medical Journal of Australia.  By contrast Willis was able to identify the bacteria that causes Lyme Disease in Australian ticks in 1995.  In addition to this Carly and Pope found an Australian strain of Borrelia, Borrelia Queenslandica in 1962. A 1959 study by Mackerras isolated Borrelia on Australian fauna – kangaroos, wallabies and bandicoots, this was also omitted.  Adding to this is the fact that a large number of diagnosed Lyme Disease patients in Australia have never travelled out of Australia.  More study desperately needs to be done on Lyme Disease in Australia. ..))

    • andrew22534
      andrew22534 peter01102

      Posted

      Hi Peter, not sure what you mean by a fee, also i didnt know they lived in Australia and the advice i gave was based on the fact i do indeed have ME / CFS and also have heart conditions. I have lost my job due to ill health and so dont appreciate you insinuation about my health either. i was suggesting things to be checked and also was suggesting things on the basis of what had been said ie ex sprinter and still cycling etc please dont make comments about me personally when you dont know me. I dont charge for any advice i give!!! However well done on pointing out Lymes may well be in Australia in some form. Also i wasnt selling any problems, i was pointing in one place things that others have said in different places on this forum
    • andrew22534
      andrew22534 eli53877

      Posted

      Hi Eli, Ok sorry i misunderstood your bit on athletics, but good to read you have had all that done. I didnt notice you were in Australia.... and while i am annoyed with part of Peters response he does makea valid point with the rest. If you look on Thyroid association websites they go into more detail (the uk one espeacially) and the basic thyroid tests dont cover it all, worth reading still i think. From reading this and your previous i would suspect ME/ CFS is unlikely and couold be something like an Australian equivalent of Lymes or worth having a look at Lupus? but sorry to say i cant offer any other advice than that really. I had sinus problems for 10 years before my first bout of ME/CFS 7/8 years ago... along with a few chest infections the year it started (prior)   

       

    • eli53877
      eli53877 andrew22534

      Posted

      Hi Andrew,

      Sorry for the confusion regarding athletics!

      I will look more deeply into thyroid stuff, and check out the UK website. 

      Thanks so much for taking the time to offer some advice- I really appreciate it.

      -Eli.

    • andrew22534
      andrew22534 eli53877

      Posted

      ok pleaseure - i also have a low thyroid hence having a bit of an interest and knowledge - good luck in your search for answers... and health!
  • georgeGG
    georgeGG eli53877

    Posted

    As far as CFS/ME is concerned, your description does not seem familiar. Good news I hope. Wishing you all the best is discovering what is wrong with you and finding a cure.
    • eli53877
      eli53877 georgeGG

      Posted

      Hi George,

      Thank you for telling me this, I really, really appreciate you taking the time to give me advice.

      Guess I just have to keep looking for answers!

      Eli.

       

    • peter01102
      peter01102 eli53877

      Posted

      andrew22534 got private reply i was wrong over fee.  misunderstood what  was said and he was saying. sorry .
  • jackie00198
    jackie00198 eli53877

    Posted

    One of the hallmarks of ME/CFS is postexertional fatigue. So the fact that you can ride a bicycle for 15 miles a day without crashing, and exercise without crashing, makes it very hard to imagine you have this illness. It is strange, though, that you do have some of the symptoms, like feeling tired all the time, having "heavy arms," and unfreshing sleep. There are no biomarkers for ME/CFS. It's a diagnosis of exclusion. So if you've had complete bloodwork and everything is negative, you might want to see an ME/CFS specialist. I have to admit I'm very puzzled by your symptoms, and do wonder if it's something other than ME/CFS.
  • willthethrill18
    willthethrill18 eli53877

    Posted

    Hey man. Doesnt really sound like the symptoms all these other people on here list. Im in a similar position, where i experience no post exertional malaise. Makes me think if there are different variants of CFS. I have unrefreshing sleep and tiredness all day because of it and also have anxiety when Im exhausted and try to go out (worry that ill pass out of exhaustion). I kind of accept whatever it is I have as MILD CFS
    • eli53877
      eli53877 willthethrill18

      Posted

      I hear you. I also have the same thing - going out to social events is really hard at the moment because of the fear of passing out.

      I'm starting to think this might all be more related to anxiety. I mean, I've NEVER actually passed out from exhaustion before, yet everytime I go somewhere public, I'm so afraid that the tiredness will overcome me.

      But it never happens; I just feel incredibly anxious and uncomfortable, then I survive (and go home).

      Our bodies are confusing. I envy friends who don't think about their health all the time...

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