CFS: what symptoms are 'normal' and what aren't?

[Kenjie]

I experience the extreme fatigue which fluctuates up and down at any level. Seem to dehydrate easily even if drink water all day. Hot flushes once in a while. Peeing a lot. Lightheadedness. Shortness of breath lasting a day or a few days. Feel like heart works harder some days. Spaceyness/malaise/brain fog...sometimes feel floppy ie tired arms kinda like being drunk but without alcohol. I don't drink or smoke.

Lastnight I was fatigued beyond fatigue was kinda like being over tired but really spacey yet felt a level of calmness.

I wish there was a way out of all this and was suddenly the physical person I was before I had son. Was always prone to getting sick but nothing compared to since giving birth!

So I am trying to understand more about general symptoms that can occur with CFS.

 

[Sushi]

You can find a lot of information on this from Myalgic encephalomyelitis: International Consensus Criteria. You could also read: Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners, An Overview of the Canadian Consensus Document.

 

[minkeygirl]

What we know is that none of us are the same with what we experience. And what we experience is normal for each one of us but maybe not for someone else.

There is just no real way to say "oh well this is normal".

What you describe for yourself is normal for you.

 

[halcyon]

I experience the extreme fatigue which fluctuates up and down at any level. Seem to dehydrate easily even if drink water all day. Hot flushes once in a while. Peeing a lot. Lightheadedness. Shortness of breath lasting a day or a few days. Feel like heart works harder some days. Spaceyness/malaise/brain fog...sometimes feel floppy ie tired arms kinda like being drunk but without alcohol.

These all sound pretty consistent with ME symptoms.

 

[SOC]

These all sound pretty consistent with ME symptoms.

As well as straight-up OI without ME. I'd want to check that out before I accepted an ME diagnosis.

 

[alex3619]

These all sound pretty consistent with ME symptoms.

I agree. I have had these symptoms at some times and not others, and have regularly heard reports of others with these symptoms.

As well as straight-up OI without ME. I'd want to check that out before I accepted an ME diagnosis.

Yes. Though OI and ME are not mutually exclusive diagnoses.

 

[SOC]

Yes. Though OI and ME are not mutually exclusive diagnoses.

Absolutely! I'd guess that most of us have OI as part of our ME, and @Kenjie could easily be one of us who does. My only point is that it's possible given the listed symptoms that Kenjie has OI without ME, which would be a wonderful thing.

Nobody in their right mind wants to have ME. OI is somewhat better accepted in the medical world and has some established treatments, so I'd be looking into an OI-only diagnosis before I accepted an ME diagnosis.

 

[halcyon]

As well as straight-up OI without ME. I'd want to check that out before I accepted an ME diagnosis.

I agree, but Ramsay specifically called out several of these symptoms in his criteria. If @Kenjie is getting PEM, then it shouldn't be a tough call.

 

[Kenjie]

I agree, but Ramsay specifically called out several of these symptoms in his criteria. If @Kenjie is getting PEM, then it shouldn't be a tough call.

Doctor diagnosed me CFS. What is oi? And what is pem? I cannot keep up with all the abbreviations ...

 

[halcyon]

Doctor diagnosed me CFS. What is oi? And what is pem? I cannot keep up with all the abbreviations ...

OI = Orthostatic intolerance. A detrimental change in blood pressure and/or heart rate brought on by upright posture that causes a number of unpleasant symptoms. A very common comorbid condition with ME/CFS.
PEM = Post exertional malaise. Hallmark symptom of ME/CFS, an increase in symptoms and debility brought on by physical and/or mental exertion.

 

[alex3619]

OI is somewhat better accepted in the medical world

My local hospital full accepts OI, and makes special provision for it, but does not recognize ME.

 

[Valentijn]

Doctor diagnosed me CFS. What is oi? And what is pem? I cannot keep up with all the abbreviations ...

Post-exertional malaise (PEM) typically hits about 24 hours after exertion. It can include full-body pain (not just the muscles used), immune symptoms (sore throat, painfully swollen lymph nodes), and neurological symptoms (ataxia), etc. "Pushing through" activities is guaranteed to trigger PEM in ME patients.

Orthostatic intolerance (OI) can trigger feelings of weakness and light-headedness during or immediately after some activities, or simply from standing or sitting upright too long. It's usually characterized by a drop in blood pressure, a drop in pulse pressure, and/or tachycardia. Staying active when upright can help prevent blood from pooling, as can building up certain muscles, but these are not options for ME patients who would be made sicker by the exertion.

There are many treatments which can help with OI, but only pacing and rest help with PEM. If unsure if you have PEM, a two-day CPET protocol can probably make the distinction. Thus far only ME patients perform substantially worse on a CPET that is 24 hours after another maximal CPET. If you do not have PEM, you do not have ME/CFS.

 

[Kenjie]

I can be chopping wood and I'm stuffe for the rest of the day @Valentijn doctor says I have CFS as post viral syndrome. I kept catching viruses throughout last year . my health was already compromised and broken down with an underactive thyroid which I'm on medication for life for. All tsh levels are normal so if it want CFS what else would it be and why would a doctor diagnose CFS if it wasn't. I'm pretty sure its cfs even though I wish like many that I didn't experience this. I can be tired for days... Beyond tired... So incredibly fatigued that its a struggle to get through the day.

So I've no doubt its at least CFS. Although what I think about a lot is what really got me to this state and what are the possibilities to reverse it all if I could pinpoint the specific cause. I always had a tendency to get sick but when I gave birth to son I developed thyroid issue and then the decline of my health from there that I'm sure my immune system weakened and let the viruses ravage my body which landed me here.

Like many I was healthier 5 years ago than I am now and I miss a big part of that fit person who could travel and go out and when cooking dinner was an easy task whereas now all I wana do most of the time is sit in my chair and rest my eyes. Also with CFS much more challenging being a single parent with little support.

 

[lansbergen]

when I gave birth to son I developed thyroid issue and then the decline of my health from there

@Jonathan Edwards

Can you shed some light on this?

 

[Valentijn]

I can be chopping wood and I'm stuffe for the rest of the day @Valentijn doctor says I have CFS as post viral syndrome. I kept catching viruses throughout last year . my health was already compromised and broken down with an underactive thyroid which I'm on medication for life for. All tsh levels are normal so if it want CFS what else would it be and why would a doctor diagnose CFS if it wasn't.

An accurate diagnosis of ME/CFS requires having PEM. Since you didn't know what PEM is, obviously your doctor did not bother to make sure you have it, nor seem to think it was important to give you any information on how best to avoid it. This isn't uncommon among non-specialists - ME/CFS is a tricky disease to diagnose, and to the best of my knowledge there are no ME/CFS specialists in New Zealand.

If you are chopping wood and suffering for the rest of the day, that sounds like you start reacting to it during or immediately after the chopping, and are feeling somewhat better by the next morning? That would not be PEM, and symptoms would go beyond feeling "stuffed" and be rather distinctive.

Chopping wood involves 1) standing still, and 2) raising your arms over your head. These are both huge triggers for Orthostatic Intolerance. Have you been assessed for Orthostatic Intolerance? It is treatable, and treating it might be sufficient to return you to normal functionality.

The other thing you might want to look into more is your thyroid problems. I think the medical literature has advanced quite a lot over the past few years, and it might be that "normal" is no longer considered normal. There are also other measurements now which were not used before, but which specialists now to be relevant to thyroid functioning, such as Reverse T3.

 

[Kenjie]

An accurate diagnosis of ME/CFS requires having PEM. Since you didn't know what PEM is, obviously your doctor did not bother to make sure you have it, nor seem to think it was important to give you any information on how best to avoid it. This isn't uncommon among non-specialists - ME/CFS is a tricky disease to diagnose, and to the best of my knowledge there are no ME/CFS specialists in New Zealand.

If you are chopping wood and suffering for the rest of the day, that sounds like you start reacting to it during or immediately after the chopping, and are feeling somewhat better by the next morning? That would not be PEM, and symptoms would go beyond feeling "stuffed" and be rather distinctive.

Chopping wood involves 1) standing still, and 2) raising your arms over your head. These are both huge triggers for Orthostatic Intolerance. Have you been assessed for Orthostatic Intolerance? It is treatable, and treating it might be sufficient to return you to normal functionality.

The other thing you might want to look into more is your thyroid problems. I think the medical literature has advanced quite a lot over the past few years, and it might be that "normal" is no longer considered normal. There are also other measurements now which were not used before, but which specialists now to be relevant to thyroid functioning, such as Reverse T3.

I want to look further into CFS and beyond that and thyroid but doctors here in nz don't listen very well and send you home after saying you're fine or not much you can do re CFS. It instills a little bit of fear in bothering to see doctor i try to avoid it as I'm always there trying to look more into it but doctor says all tests come back normal. I even have blood in my wee and past year that I get urine tested noone indicates that could be an issue in any way either. Hard to be taken seriously here in nz. Believe me I laid many complaints about healthcare last year when I'd barely been listened to and was left for the sinusitis to get worse for ten months constant visits to doctors being severely unwell.

In regards to CFS I don't even have to exert myself to be extremely fatigued... I can get 9 hours sleep and wake up this way. Most of my time is spent in my chair. Makes me feel old and decrepit.

I've paid out money after money to see doctors even recently... I keep seeing doctor about feeling unwell and experiencing hot flushes and dehydration then he doesn't say anything helpful or say anything about it at all. How many doctors do I need to go through to be taken seriously.

Also constant blood tests monthly or every few months but all come back normal including tsh levels. Unsure if I've been tested for reverse t3 but I do recall wanting to request for it but must have forgotten or forgot if I did ask.

 

[Valentijn]

@Kenjie - I think your best bet would be to focus on the OI angle. With your various symptoms, it's a good fit. Nearly every ME/CFS patient has it as well, and it's one of the few things we can be treated for which can reduce disability.

You can check for OI pretty easily at home, or with your GP. Basically check your blood pressure and heart rate when laying down, then check it again after standing up. Delayed reactions are hardest to notice, but can be checked for by standing still without tensing muscles for 15-30 minutes and periodically checking your blood pressure and heart rate.

Low pulse pressure (weak pulse) can be even trickier for doctors to notice, but it's just the difference between systolic and diastolic values. So if blood pressure is 120/80, pulse pressure is 40 (120-80). 40-50 is pretty normal for pulse pressure, and under 30 is likely to not feel good. It can get worse later in the day, so testing later in the day and/or when feeling stuffed might be most effective in showing any problems.

If there is any problem there, you can look at the websites of any hospitals in the area to see if there's one with a dysautonomia center or specialist. Cardiologists will miss most OI problems, as the problem is often with the nervous system in regulating blood pressure, rather than with the heart. Your GP will probably not be aware of most types of Orthostatic Intolerance, so you might have to spood-feed him/her the diagnostic information and suggestions for further referrals and testing.

 

[Kenjie]

@Kenjie - I think your best bet would be to focus on the OI angle. With your various symptoms, it's a good fit. Nearly every ME/CFS patient has it as well, and it's one of the few things we can be treated for which can reduce disability.

You can check for OI pretty easily at home, or with your GP. Basically check your blood pressure and heart rate when laying down, then check it again after standing up. Delayed reactions are hardest to notice, but can be checked for by standing still without tensing muscles for 15-30 minutes and periodically checking your blood pressure and heart rate.

Low pulse pressure (weak pulse) can be even trickier for doctors to notice, but it's just the difference between systolic and diastolic values. So if blood pressure is 120/80, pulse pressure is 40 (120-80). 40-50 is pretty normal for pulse pressure, and under 30 is likely to not feel good. It can get worse later in the day, so testing later in the day and/or when feeling stuffed might be most effective in showing any problems.

Funny you mention blood pressure a few weeks back I was not feeling right at all so I saw local after hours nurse who could not find anything wrong... Few days later I saw a doctor at the late night doctors still not feeling right felt like I was Gina pass out... He tested my blood pressure it was high I think that was sitting position and apparently in standing position it was normal. That doctor gave me b12 injections thinking it would help some how when I'd mentioned I'd been taking vit B and D3 . I've stopped taking d3 as I felt worse and saw no improvement taking the one daily dose of 1000iu.

Been trying a few things and so far not finding anything that helps the fatigue or other unpleasant symptoms subside.

So here I am trying to learn more and see what can potentially become of it

 

[Kenjie]

Also the fatigue can fluctuate up and down throughout a day too. Last few weeks maybe more have been fatigued all day every day.. Then today I thought I felt 'better' but still felt a sense of burnt tiredness then I went for a drive to take son to park and just standing there I was starting to decline in any energy.. We then went for a small drive in the countryside where we live I was quickly getting more tired so we came home.. I had to chop wood light fire cook dinner then hung washing over clothing horse.. I thought I needed to hit the bed asap so I lay down on couch and even though I'm so tired I seem to be able to keep my eyes open at least whereas when I first lay on couch was not so sh*te hot. Will be in bed soon anyway. Its 9.30 pm I go to bed between now and 10.30 latest every night to keep a good sleep pattern.

 

[AndyPandy]

@Kenjie I think that Dr Vallings treats ME/CFS patients in NZ. She is one of the authors of the ME International Consensus Primer for Medical Practitioners. I expect she would be across OI as well, as this is included in the Primer.

I went to a presentation given by her at an event hosted by an ME/CFS support organisation in Australia. She seemed very well informed and caring.

Best wishes, Andy