Is this likely to be ME?

[Marky90]

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.

Ah If only ME was like the first sentence in R.Kellys "Bump n`Grind"..
What does your PEM look like? And how are you doing at the moment, relapse or?

Gotta say I dont regret making a user on these forums, finally someone who can relate!

 

[MeSci]

Ah If only ME was like the first sentence in R.Kellys "Bump n`Grind"..
What does your PEM look like? And how are you doing at the moment, relapse or?

Gotta say I dont regret making a user on these forums, finally someone who can relate!

I wish this place had been here when I became ill, as do many of us long-termers. To have people to talk to who understand, and be able to get good advice, is invaluable. (There is also some silly advice, but you seem like a sensible chap so can hopefully spot it!)

I'm mildly rough - have been like this for 2-3 days, maybe due to exertion on Friday. I was quite strong and well this morning, then it came back. Weakness, mild headache, mild nausea. Nothing drastic.

It's a good idea to keep a health diary to help you work out your PEM delay. Mine seems to be about 36-48 hours at the moment. Additional exertion seems to delay it further, but then it's worse when it finally hits.

I have had milder periods where PEM has taken longer to appear, and is much milder. I've also had worse periods where it came in about 24 hours. But there is always guesswork.

If we could identify biomarkers that we could test at home to see what stage we were at, life would be easier!

 

[Hope123]

1) This is a good resource for learning about how to pace your activities:

http://www.cfidsselfhelp.org/


2) Earlier, orthostatic intolerance and POTS was mentioned. These conditions have a lot of symptoms in common with ME/CFS but it is also possible to have both (ME/CFS +POTS/OI) The good things about POTS/OI is there are some treatments that work very well for some people. So you should get ruled out for that via a test like a tilt table.

http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

3) Not everyone has an acute infectious onset. But ME/CFS has some odd symptoms after exertion including increased problems sleeping/ thinking, sore throat, sore muscles and joints (even those that you did not move), feeling like you're coming down with a flu, etc. If you have these symptoms, you may be more likely to have ME/CFS. As someone else suggested, you may want to keep a short journal of your symptoms and activity to see if they correlate.

 

[Marky90]

1) This is a good resource for learning about how to pace your activities:

http://www.cfidsselfhelp.org/


2) Earlier, orthostatic intolerance and POTS was mentioned. These conditions have a lot of symptoms in common with ME/CFS but it is also possible to have both (ME/CFS +POTS/OI) The good things about POTS/OI is there are some treatments that work very well for some people. So you should get ruled out for that via a test like a tilt table.

http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

3) Not everyone has an acute infectious onset. But ME/CFS has some odd symptoms after exertion including increased problems sleeping/ thinking, sore throat, sore muscles and joints (even those that you did not move), feeling like you're coming down with a flu, etc. If you have these symptoms, you may be more likely to have ME/CFS. As someone else suggested, you may want to keep a short journal of your symptoms and activity to see if they correlate.

Thanks so much for the feedback!

Regarding point nr. 2: I dont think i have POTS as my heartrate dont increase significantly while standing. My blood pressure dont seem to be affected either. I did for a long time think i had POTS though (because i got tired from walking, and partly because im a bit of a hypochondriac )

Point 3: Yeah the weird thing is that i have none of those symptoms. I only really have physical and mental fatigue, shakyness + leg fasciculations.

 

[Marky90]

And yeah im keeping a journal! So far i havent seen any causal PEM. But when i was really sick in december (housebound), i got worse for some hours after trying to walk. I guess that is PEM.. I suppose its more clear when i am so sick that i am housebound (which is rare).

 

[Marky90]

Also, PEM seems to mainly come from aerobic activites when already in a bad state.Does this maybe point in the direction that mitochondrial dysfuntion is my main, dysfunction?

 

[MeSci]

Also, PEM seems to mainly come from aerobic activites when already in a bad state.Does this maybe point in the direction that mitochondrial dysfuntion is my main, dysfunction?

I think we all have mitochondrial dysfunction with ME, but there are different kinds. There are a lot of threads on mitochondria.

Shakiness and fasciculations can be due to mineral/electrolyte deficiency. People with ME seem particularly prone to this, but it can happen to people without ME too. Sorry but I forgot whether you had had your levels tested.

 

[Marky90]

I think we all have mitochondrial dysfunction with ME, but there are different kinds. There are a lot of threads on mitochondria.

Shakiness and fasciculations can be due to mineral/electrolyte deficiency. People with ME seem particularly prone to this, but it can happen to people without ME too. Sorry but I forgot whether you had had your levels tested.

Yeah probably! I would love to get a test on that, it would be something so concrete, and it would explain so much. I think fasciculations may also be due to nerve inflammation/dysfunction. There is something called benign fasciculation syndrome, but those with BFS dont get the mental fatigue as well i think..

 

[MeSci]

Yeah probably! I would love to get a test on that, it would be something so concrete, and it would explain so much. I think fasciculations may also be due to nerve inflammation/dysfunction. There is something called benign fasciculation syndrome, but those with BFS dont get the mental fatigue as well i think..

Even in the UK health system (which is very poor in many ways) it is standard to test people's sodium, potassium, phosphate, bicarbonate and iron.

Can you get copies of your test results?

 

[Marky90]

Even in the UK health system (which is very poor in many ways) it is standard to test people's sodium, potassium, phosphate, bicarbonate and iron.

Can you get copies of your test results?

I see! I think i only had iron tested, which was bit high but normal (30 - reference: 9,0-34)
I`ll mention the other stuff at my appointment next week

 

[Hope123]

Thanks so much for the feedback!

Regarding point nr. 2: I dont think i have POTS as my heartrate dont increase significantly while standing. My blood pressure dont seem to be affected either. I did for a long time think i had POTS though (because i got tired from walking, and partly because im a bit of a hypochondriac )

Point 3: Yeah the weird thing is that i have none of those symptoms. I only really have physical and mental fatigue, shakyness + leg fasciculations.

I suggested the tilt table because there are several varieties of OI and simple blood pressure measurements in different positions may not be enough to diagnose it. (Of course, if changes show up, then you don't need a tilt table.) Also, a tilt table requires that one relax in a certain way which increases the chances of detecting changes; by simply standing, you are effectively using your leg muscles and that in itself may give a false reading. Finally, some varieties of OI require a tilt table test for more than 30 minutes so it's not just immediate drops on blood pressure or changes in heart rate. If you read the OI link, it talks about these issues somewhat. The hard part of getting a tilt table is finding a doctor who will do it properly -- you want a cardiologist of neurologist with experience/ interest in autonomic disorders, not just any doc. It's worth ruling out because, even if it turns out that OI is not your primary health issues, as many as 60%-80% of ME/CFS patients have this as a secondary issue. The 80% figure comes from a study where ALL patients were tested with tilt table even if they did not think they had symptoms like fainting or near-fainting:

http://drlapp.com/wp-content/uploads/TTT_symptoms.pdf

These authors argue that ALL ME/CFS patients be screened with a tilt table and I agree with them.

 

[Valentijn]

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..

Not really. PEM still has to be delayed considerably. If your reaction is during or immediately after exertion, or pretty soon after, that is still Exercise Intolerance but it is not PEM.

Exercise intolerance is a rather more common symptom which can be triggered by many different diseases. If you're not getting actual PEM, then you probably don't have ME/CFS, and should look into other illnesses involving exercise intolerance. A common one is Orthostatic Intolerance, which can be detected by monitoring your heart rate and blood pressure during and after exertion, and when you feel poorly.

 

[Helen]

Blood work so far is also fine (although B-hb, P-homocystein, S-albumin and S-protein total, was sligthly higher than normal

Hi Marky,
I would investigate the "slightly higher than normal" P-homocysteine further. It usually indicates a vitamin B6, B12 or folate deficiency - or a combination.

My b12 was a bit on the low side(289 if i remember correctly)

!!!

 

[Marky90]

Not really. PEM still has to be delayed considerably. If your reaction is during or immediately after exertion, or pretty soon after, that is still Exercise Intolerance but it is not PEM.

Exercise intolerance is a rather more common symptom which can be triggered by many different diseases. If you're not getting actual PEM, then you probably don't have ME/CFS, and should look into other illnesses involving exercise intolerance. A common one is Orthostatic Intolerance, which can be detected by monitoring your heart rate and blood pressure during and after exertion, and when you feel poorly.

Ok right! Thanks so much for the feedback I defininitely have exercise intolerance, but it isnt usually very severe. In the weekend i was drinking a lot at Friday and Saturday, and i havent become worse, so i guess i should have had a reaction. I wanted to see how it would affect my form.

I was working today for three hours, and i seem to get shaky/spacy with mental effort without breaks. This is the bit that seems a bit CFS-ish to mee, but i guess it could be loads of other stuff too!

I dont have significant increased heart rate while standing, but i do feel like i can think less clearly when standing! and especially after e.g. studying for two hours. I am going to look into blood volume and circulation probably.

Im gonna see a neurologist to hopefully rule out a lot of stuff..

 

[Marky90]

Hi Marky,
I would investigate the "slightly higher than normal" P-homocysteine further. It usually indicates a vitamin B6, B12 or folate deficiency - or a combination.
!!!

Hi Helen! Yeah im going to check that out! Especially after reading all the heart-stuff on the internett Do you think the b12 on the low side together with heightened P-homocysteine would be an argument for trying b12 injections?

 

[Valentijn]

I dont have significant increased heart rate while standing, but i do feel like i can think less clearly when standing! and especially after e.g. studying for two hours. I am going to look into blood volume and circulation probably.

Something which can be a bit harder to spot (even by doctors) is low pulse pressure. This happens when the diastolic and systolic values are too close together, and it indicates that not much blood is being pumped with each heart beat. It can cause pretty much the same symptoms as low blood pressure, but can happen when systolic and diastolic values each look relatively normal in isolation, if not paying attention to their distance from each other.

OI can also have a very delayed onset - after minutes or hours of sitting up or standing up, instead of hitting immediately.

 

[Marky90]

Something which can be a bit harder to spot (even by doctors) is low pulse pressure. This happens when the diastolic and systolic values are too close together, and it indicates that not much blood is being pumped with each heart beat. It can cause pretty much the same symptoms as low blood pressure, but can happen when systolic and diastolic values each look relatively normal in isolation, if not paying attention to their distance from each other.

OI can also have a very delayed onset - after minutes or hours of sitting up or standing up, instead of hitting immediately.

Interesting! Is this when the pulse feels weak? Cause that is something i have noticed happening after exercise e.g., and it correlates with how i feel. If weak, feel bad too. I checked my heart last year, and it is functionally OK.

 

[MeSci]

I was working today for three hours, and i seem to get shaky/spacy with mental effort without breaks. This is the bit that seems a bit CFS-ish to mee, but i guess it could be loads of other stuff too!

I take it that your blood glucose is OK? Low sodium or low glucose can cause shakiness and dizziness, I think.

 

[Marky90]

I take it that your blood glucose is OK? Low sodium or low glucose can cause shakiness and dizziness, I think.

Hmm ill have to have a look to find the blood tests I was thinking bout trying salt tablets, but to be safe i want to check my sodium levels first!

 

[Valentijn]

Interesting! Is this when the pulse feels weak? Cause that is something i have noticed happening after exercise e.g., and it correlates with how i feel. If weak, feel bad too. I checked my heart last year, and it is functionally OK.

Yes, exactly. If pulse pressure is under 25 or so, most blood pressure monitors will give fairly frequent error messages because it's not picking up your heart beats regularly enough to make an accurate calculation. Under 20 or so I almost never get a reading, though I think I've managed to get one at 14 or 16.

As a frame of reference, a pulse pressure under 25 is considered to be an emergency when it happens due to blood loss

Usually our hearts do check out pretty normally. I have a funky TU wave or something, but that's more of an oddity than a problem. However, issues with heart rate and blood pressure can also be due to dysautonomia, where our nervous system/brain react improperly to changes in position and other stimuli.