Is this likely to be ME?

[Marky90]

Hi everyone!
Im interested in hearing your opinion on my situation..

I am a 24 year old male student. Last year i collapsed after a football training (because i felt weird and like i had no energy at all). This continued for about a month, and i was housebound. Gradually i got back into life, and could have strength training three times a week, work and sing at concerts. I still however, didnt feel quite right, like before.

Then in December i started having muscle fasciculations and a irritable bowel. I understood my health was going downwards again. I was then housebound again for three weeks, after pushing it when i was out jogging.

I have been through an extensive heart check-up, which came back fine.
Blood work so far is also fine (although B-hb, P-homocystein, S-albumin and S-protein total, was sligthly higher than normal), no active infection, but it showed that ive had EBV and cytolomegavirus in the past.

Long story short, im slowly getting a bit better, but it goes up and down.
I|m a bit confused because i dont have any pain or cold symptoms going on.
The main symptoms are physical and mental fatigue, and i seem to have some form of post-exertional malaise going on as well.

Is this idiopathic chronic fatigue? (which manages to explain even less than CFS ), or something else?
I|m resting a lot to better my chances to get better..
This is really doing my head in, as im not well enough to study etc.
Would really appreciate some opinions and words of advice
Thanks!

 

[A.B.]

That it's slowly getting better is good. It might just go away on its own. If it gets worse you have do more tests to find out what is going on. A diagnosis of CFS shouldn't be made without excluding all other possibilities and I'm guessing there are still many left.

Can you describe the post-exertional malaise that you get?

Can you describe your collapse more in detail?

 

[Marky90]

That it's slowly getting better is good. It might just go away on its own. If it gets worse you have do more tests to find out what is going on. A diagnosis of CFS shouldn't be made without excluding all other possibilities and I'm guessing there are still many left.

Can you describe the post-exertional malaise that you get?

Can you describe your collapse more in detail?

Hey A.B! Yeah im thinking its best to just continue testing as something clearly is malfunctioning..

The PEM varies a bit. For example: jogging atm is quite out of the question, it feels like a marathon has been ran before ive started. I suppose the fasciculations in my leg must have something to do with this fatigue.
I still have muscular strenght intact, but last week when i went to the gym, i quickly got pins and needles in my chest and back, and felt spaced out. So i guess - the PEM isnt flue-like, it just feels like im going to faint and i get anxious as i cant think straight either.. Its like the body responds to exertion with panic. HOWEVER: I do get fatigued much faster than normal, and i dont get that "after-exercise"-feeling ones supposed to get..

Regarding the collapse: It was a bit like above. I just felt a strong need to sit down, had some tachycardia, and after that i had really low energy for a long time.

The weird thing is i can have a night out with friends, although fatigued, but not feeling worse than a normal hangover. I mean, hangovered is kinda how i feel all the time!

 

[MeSci]

Hey A.B! Yeah im thinking its best to just continue testing as something clearly is malfunctioning..

The PEM varies a bit. For example: jogging atm is quite out of the question, it feels like a marathon has been ran before ive started. I suppose the fasciculations in my leg must have something to do with this fatigue.
I still have muscular strenght intact, but last week when i went to the gym, i quickly got pins and needles in my chest and back, and felt spaced out. So i guess - the PEM isnt flue-like, it just feels like im going to faint and i get anxious as i cant think straight either.. Its like the body responds to exertion with panic. HOWEVER: I do get fatigued much faster than normal, and i dont get that "after-exercise"-feeling ones supposed to get..

Regarding the collapse: It was a bit like above. I just felt a strong need to sit down, had some tachycardia, and after that i had really low energy for a long time.

The weird thing is i can have a night out with friends, although fatigued, but not feeling worse than a normal hangover. I mean, hangovered is kinda how i feel all the time!

It sounds consistent with ME. Do you have a heart rate monitor? If you have ME you may find that your heart rate soars with very little activity, which can indicate that you are going into anaerobic ATP production too quickly.

The anxiety also rings true - it seems to be part of the illness for a high proportion of us. Some of us have been able to alleviate that with diet and supplements.

Get all the relevant tests you can to exclude possibly-treatable illnesses, and rest as much as you can. Try to avoid your heart rate going high.

And keep reading threads here!

Good luck.

 

[Marky90]

It sounds consistent with ME. Do you have a heart rate monitor? If you have ME you may find that your heart rate soars with very little activity, which can indicate that you are going into anaerobic ATP production too quickly.

The anxiety also rings true - it seems to be part of the illness for a high proportion of us. Some of us have been able to alleviate that with diet and supplements.

Get all the relevant tests you can to exclude possibly-treatable illnesses, and rest as much as you can. Try to avoid your heart rate going high.

And keep reading threads here!

Good luck.

Thanks for the feedback MeSci!

I had a heart monitor back in September, i then went out jogging and also lifted weigths. The results were fine, my heart rate dont seem to be different than usual. (edit; this was however in the period i was doing quite good)

I guess ill just have to wait and see how things pan out.. I agree it seems a bit like some kind of ME.

 

[MeSci]

Thanks for the feedback MeSci!

I had a heart monitor back in September, i then went out jogging and also lifted weigths. The results were fine, my heart rate dont seem to be different than usual.

I guess ill just have to wait and see how things pan out.. I agree it seems a bit like some kind of ME.

I meant to say - do you know that PEM can be delayed by 24 hours, 48 hours or even longer? It can be hard to make the connection because of the delay, but individuals tend to be quite consistent with their own personal delays, although it can change over time, with improvements and deteriorations. Once you have figured yours out you can start to get an idea of how much you can do without getting PEM. It is a very hard lesson to learn and I don't know if anyone actually perfects it! (I haven't - after 2o years.)

 

[Marky90]

I meant to say - do you know that PEM can be delayed by 24 hours, 48 hours or even longer? It can be hard to make the connection because of the delay, but individuals tend to be quite consistent with their own personal delays, although it can change over time, with improvements and deteriorations. Once you have figured yours out you can start to get an idea of how much you can do without getting PEM. It is a very hard lesson to learn and I don't know if anyone actually perfects it! (I haven't - after 2o years.)

Yeah im aware of this, and i have really been trying to see some kind of pattern. As far as im concerned the PEM, when it happens, happens quite instantly. With the above explained onset when exertion is physical. When exertion is mental, i just get sleepy. I was out drinking on Friday, so i suppose PEM would at least happen today? I am quite tired today, and i suppose that can be it. Its however, as you point out, quite hard to point out cause and effect. I just did 3*20 push ups, and after what i understand, youre usually weaker on a PEM-day?

Man, i dont know..

 

[Martial]

p.e.m. without significant delay and exercise intolerance can happen with many other illnesses, the strange thing about some cases like M.E. is the delay behind it. My input is I would also try to rule out b12 deficiency, lyme disease, and maybe POT/S. If you get tested for Lyme and do it right you would need to go to an LLMD, then have the western blot test done by IgeneX. For POT/S it would be better to get a tilt table test as otherwise it can be more tricky to catch, there are in mose cases also causes for POT/S that also needs to be investigated. Its a symptom of system dysfunction and not a disease in and of itself. The b12 deficiency is a pretty simple test but "low normal" is not really normal. You can have low normal levels like 200-300 but actually be severely deficient in the amount your body is actually using. A schilling b12 test is more accurate to see what is actively being used but a much more rare test to find in the U.S.

 

[Marky90]

p.e.m. without significant delay and exercise intolerance can happen with many other illnesses, the strange thing about some cases like M.E. is the delay behind it. My input is I would also try to rule out b12 deficiency, lyme disease, and maybe POT/S. If you get tested for Lyme and do it right you would need to go to an LLMD, then have the western blot test done by IgeneX. For POT/S it would be better to get a tilt table test as otherwise it can be more tricky to catch, there are in mose cases also causes for POT/S that also needs to be investigated. Its a symptom of system dysfunction and not a disease in and of itself. The b12 deficiency is a pretty simple test but "low normal" is not really normal. You can have low normal levels like 200-300 but actually be severely deficient in the amount your body is actually using. A schilling b12 test is more accurate to see what is actively being used but a much more rare test to find in the U.S.

Thats really interesting! My b12 was a bit on the low side(289 if i remember correctly). I mentioned for the doc that there was no harm in trying b12 injections, to see if it had some effect. But, he shrugged his shoulders and pointed out i wasnt deficient. When i pointed out it might be a intracellular problem he just laughed.. Hehe.

 

[chipmunk1]

Thats really interesting! My b12 was a bit on the low side(289 if i remember correctly). I mentioned for the doc that there was no harm in trying b12 injections, to see if it had some effect. But, he shrugged his shoulders and pointed out i wasnt deficient. When i pointed out it might be a intracellular problem he just laughed.. Hehe.

you should have asked him if he only prescribes medications if the patient has a deficiency of that substance.

 

[MeSci]

Yeah im aware of this, and i have really been trying to see some kind of pattern. As far as im concerned the PEM, when it happens, happens quite instantly. With the above explained onset when exertion is physical. When exertion is mental, i just get sleepy. I was out drinking on Friday, so i suppose PEM would at least happen today? I am quite tired today, and i suppose that can be it. Its however, as you point out, quite hard to point out cause and effect. I just did 3*20 push ups, and after what i understand, youre usually weaker on a PEM-day?

Man, i dont know..

Tiredness without a delay isn't PEM, but does occur in ME. The sleepiness you get after mental exertion is also common - it may be a type of 'brain fog'. Have you tried sleeping at such times? Quite often we find that we can't, and we just stay in a 'limbo' state between sleep and full consciousness.

Until you know what you have, I would advise extreme caution about exertion - don't push yourself unless it is to try to test what's going on.

If it's ME, you need to learn to pay very close attention to what your body can cope with. For example, getting slightly breathless means you have done too much, and should stop straight away. Starting to feel tired or weak also means that you must stop. If you move more slowly, you should be able to do more without getting tired or suffering PEM. It's very frustrating, especially for such a young, fitness-oriented person such as yourself, but sadly it's the energetic, motivated type who seem to get this illness most.

Yes - PEM does commonly involve weakness, and other symptoms, e.g. digestive upset, poor appetite, constipation or diarrhoea, insomnia, muscle pain, muscle tension, headache, excessive urine production, cramp, etc.

 

[MeSci]

If you get tested for Lyme and do it right you would need to go to an LLMD, then have the western blot test done by IgeneX.

In case you don't know, @Marky90, 'LLMD' stands for 'Lyme-literate medical doctor' (I think!).

 

[Martial]

Thats really interesting! My b12 was a bit on the low side(289 if i remember correctly). I mentioned for the doc that there was no harm in trying b12 injections, to see if it had some effect. But, he shrugged his shoulders and pointed out i wasnt deficient. When i pointed out it might be a intracellular problem he just laughed.. Hehe.

Well there is one thing you can try right away. A level that low definitely means you would benefit very well from some b12 injections/ sublinguals in methyl form, along with methyl folate. If Methyl b12 is a problem you could also try Hxdroxy but don't ever take cyanob12 because its junk, alongside the standard "folic acid". These things can actually hinder absorption of the natural and bio available versions. In Japan and other countries of the world they consider >1000 to be the optimum standard. There could be some forms of chronic infection that may have triggered the low b12 as well though. Again I just feel it would be worthwhile to rule out an issue with lyme and co infections with a L.L.M.D., Lyme Literate Medical Doctor, like MeSci mentioned. You had some good tests already done with those viral panels too. Sorry I should also state I am not condoning or offering medical advice, just suggestions based on experience and of course get a doctors approval before starting any new treatment.

 

[Marky90]

Tiredness without a delay isn't PEM, but does occur in ME. The sleepiness you get after mental exertion is also common - it may be a type of 'brain fog'. Have you tried sleeping at such times? Quite often we find that we can't, and we just stay in a 'limbo' state between sleep and full consciousness.

Until you know what you have, I would advise extreme caution about exertion - don't push yourself unless it is to try to test what's going on.

If it's ME, you need to learn to pay very close attention to what your body can cope with. For example, getting slightly breathless means you have done too much, and should stop straight away. Starting to feel tired or weak also means that you must stop. If you move more slowly, you should b
e able to do more without getting tired or suffering PEM. It's very frustrating, especially for such a young, fitness-oriented person such as yourself, but sadly it's the energetic, motivated type who seem to get this illness most.

Yes - PEM does commonly involve weakness, and other symptoms, e.g. digestive upset, poor appetite, constipation or diarrhoea, insomnia, muscle pain, muscle tension, headache, excessive urine production, cramp, etc.

Right, i guess everyones different with regards to PEM. Im no medic, but it seems likely that it will vary based on type of onset and our genetic makeup. I didnt have a "flu-like" acute onset, so i suppose that will colour the potential CFS as well..

With regards to sleep - I don|t have any problems with it. I have lots of nightmares though, and from time to time i wake up in panic, quite severely depersonificated (dont know if thats a word, im from norway ). Other than this, i dont really have much cognitive stuff going on, other than the abnormal mental fatigue. Which also brings on shakyness and depersonification..

And i agree with you, its really important to listen to the body, and take it seriously. Youre feeling like crap for a reason.. At the moment i`m living like i have ME, if i feel really fatigued and out of it, i stay i bed. The frustrating part is when you feel okay-ish and start an activity, only to realise it was too much. I suppose most ME-patients get active too fast (and that is so incredibly understandable, when were so fricking patient!), this might be nice to have in mind..

Today i went to work and felt like crap.. But its just nice to do something "serious" from time to time..

 

[Marky90]

And yeah, it is so very frustrating, and frightening, not knowing what the future holds.. I think maybe it would wise for me to see a shrink. You cant prepare mentally for this i think.. I mean being so sick for such a long time (and in saying this im aware of the incredible people being sick for decades. In norway we have a guy who has been laying in a black room for 10 years. It is just heartbreaking), normally you would die But not with CFS

 

[Marky90]

In case you don't know, @Marky90, 'LLMD' stands for 'Lyme-literate medical doctor' (I think!).

Thanks! Didnt know I suppose i could get tested for that, but im not really sure if i fit the picture..

 

[MeSci]

And i agree with you, its really important to listen to the body, and take it seriously. Youre feeling like crap for a reason.. At the moment i`m living like i have ME, if i feel really fatigued and out of it, i stay i bed. The frustrating part is when you feel okay-ish and start an activity, only to realise it was too much. I suppose most ME-patients get active too fast (and that is so incredibly understandable, when were so fricking patient!), this might be nice to have in mind..

Today i went to work and felt like crap.. But its just nice to do something "serious" from time to time..

You'll soon know that we are not as good at practising as preaching. I know that I overdid something today (putting up a bracket for a solar light) but I was so keen and enthusiastic (just bought the lights and want to be able to put them up as soon as they arrive!) I just did it. I do try hard to space activity out time-wise though. I need to be able to walk into town on Friday, so I will now try to avoid further exertion until then, apart from slow, non-strenuous things.

Your English is very good. I think the word that people use is depersonalisation. I don't think that I get it, but some people here do.

 

[Marky90]

Well there is one thing you can try right away. A level that low definitely means you would benefit very well from some b12 injections/ sublinguals in methyl form, along with methyl folate. If Methyl b12 is a problem you could also try Hxdroxy but don't ever take cyanob12 because its junk, alongside the standard "folic acid". These things can actually hinder absorption of the natural and bio available versions. In Japan and other countries of the world they consider >1000 to be the optimum standard. There could be some forms of chronic infection that may have triggered the low b12 as well though. Again I just feel it would be worthwhile to rule out an issue with lyme and co infections with a L.L.M.D., Lyme Literate Medical Doctor, like MeSci mentioned. You had some good tests already done with those viral panels too. Sorry I should also state I am not condoning or offering medical advice, just suggestions based on experience and of course get a doctors approval before starting any new treatment.

Great stuff Martial, thanks! I will definitely suggest this for my next doctor

 

[Marky90]

You'll soon know that we are not as good at practising as preaching. I know that I overdid something today (putting up a bracket for a solar light) but I was so keen and enthusiastic (just bought the lights and want to be able to put them up as soon as they arrive!) I just did it. I do try hard to space activity out time-wise though. I need to be able to walk into town on Friday, so I will now try to avoid further exertion until then, apart from slow, non-strenuous things.

Well thanks then

Haha! I guess that is just part of the disease, since its so hard to predict how the body will react. Especially considering it varies with what period youre currently in, and sometimes it doesnt even seem to be any particular reason..

 

[MeSci]

Well thanks then

Haha! I guess that is just part of the disease, since its so hard to predict how the body will react. Especially considering it varies with what period youre currently in, and sometimes it doesnt even seem to be any particular reason..

I knew it was a bad idea. I was already feeling a bit rough and weak. My body was saying "NO!!!!" My enthusiasm overcame my self-discipline. But you're right - sometimes you can get away with over-exertion, sometimes you can't. I'm expecting some nasty PEM from today. If it doesn't come, it will be a nice surprise.