mild symptoms

[.jm.]

How mild can CFS be and still likely be CFS? The symptoms completely match, But I've never once been too fatigued to go to go shopping or walk through an airport. My chief complaint is from going from top athletic shape to feeling fatigued an unable to exercise. And I've been tested for anything and everything that any doctor I've seen could think of that could be causing it. so we've basically done the rule-out for everything else.

so in some sense, if it really is CFS, I'm currently lucky. And when CFS is mild (particularly compared to people that can't get out of bed), does the likely viral causes change?

I was in excellent athletic shape before the onset.

• my chief complaint is fatigue during and after exercise. I initially described it as feeling like I hit my lactic threshold within a few minutes at what use to be easy speeds for me. I also described it like feeling like I did a workout yesterday even when I had rested for a week. And I would feel physically sore after even short aerobic exercise.
• I have terrible insomnia. my insomnia predates the fatigue by a few years, but since the fatigue onset, it is really really bad. I use to function normally with ambien managing my fatigue. It just isn't sufficient anymore. I still feel exhausted when I wake up in the morning.
• The first symptom at onset was an episode of arrhythmia triggered by excercise
• I get brief moment of light-headed-ness almost every single time I go from sitting to standing or reach from standing the ground to pick something up and stand up. There is a delay of about 5-10 seconds and then it hits for 5-10 seconds and then goes away. It is like a delayed
• poor appetite, and I gained a little bit of weight anyway. which could be attributed to almost no exercise.
• raynaud's which shows up even at temperatures as warm as 64F.

 

[ryan31337]

Hi @.jm.,

With your symptoms I would make sure that POTS and other forms of orthostatic intolerance are investigated. Unfortunately even a cardiologist referral and regular workup won't uncover much unless you get lucky - look for a specialist in autonomic disorders to be certain.

Best of luck,
Ryan

 

[.jm.]

Thank you for the idea. Upon reporting an episode of arrhythmia triggered a year ago during a workout on a treadmill, she referred me to cardiology. Cardiology ordered a stress-echo, EKG, and holter monitor. The resulting interpretation was normal/healthy. I did see someone in the sport cardiology subgroup so they would take my level of fitness seriously (as opposed to thinking I was an out-of-shape bum), but you know how major hospitals go anyway: I barely saw the treating physician - only once actually. It was like it was just a formality in ordering the diagnostic testing.

Interestingly, at the stress echo which was 11 months ago, I tapped out before I could hit my max heart rate. It was like it was a clue about a month before the fatigue onset.

So yes, while waiting for other specialist appointments in the next few months, I should see if my doctors would investigate POTS. I also saw a video by a doctor at Ohio State discussing POTS and fatigue, and I thought maybe I should call his department too.

But does POTS have have antagonized crash/recovery periods like CFS?

 

[ryan31337]

POTS is just the end-result of a number of varying insults to the body, so the specific underlying cause of the POTS may dictate the wider symptoms. I know some POTS patients that don't experience PEM, some that do.

There is evidence, some good, for impairment of normal circulation in POTS that can lead to issues with oxygen delivery and very poor aerobic performance. My POTS doc wasn't concerned about my below normal VO2max CPET result, despite the physiologists (who didn't have experience in POTS) suggesting it must be the result of muscle disease/metabolic problems.

A tilt table test and 7 day holter is a good start. A CPET might be less useful in your case if you previously functioned at a very high level (unless you happen to know your pre-illness VO2max!). But an expert in the field of OI/autonomic issues is a must, you'd be surprised how many cardiologists still consider POTS a non-issue despite guidelines from major cardiovascular societies...

 

[.jm.]

I don't know my exact pre-illness VO2max. I do know that two years ago in the best shape of my life it was VDOT 57.3. I lined up on a starting line ready to attempt a 2:50 marathon. A year ago, I was not in that kind of shape, but still preformed around VDOT 55 and was ran track with some of the the local elite squad once a week. I never had metabolic testing for VDOT. (I wanted to but never needed it)

One more interesting symptom I should mention. For the last year or two, I've had a really difficult time managing hydration in sports. I could go running in the heat, drink a bottle of water. It would just slosh around in my stomach never digesting, make me sick, and I'd have to stop and throw up.


There was one brief episode of illness about a year ago that I'm starting to think predicts this whole thing. I was sick for a day or two with something that felt like food poisoning or Norovirus. It was while I was in Florida. The symptom timeframe doesn't match Zika, and there really isn't any lyme disease in Florida. Maybe it was echovirus and that is why it felt like stumach flu and was the trigger.

 

[Hip]

How mild can CFS be and still likely be CFS?

The illness severity is often described by the ME/CFS scale of mild, moderate and severe; mild patients tend to be able to work still, albeit sometimes only part-time; moderate patients tend to be housebound much of the time; severe patients tend to be bedbound much of the time. There is also the very severe category.

 

[lafarfelue]

I second the suggestion that you get checked for POTS/OI/dysautonomia.

A ‘poor mans’ tilt test is the base test you can have done to give an indication of whether you may have it. Further testing can be done from there, as necessary. Well worth finding someone specific who is across dysautonomia, than hoping for the best with whomever you're referred to or used to seeing.

I also suggest finding your energy envelope and staying within that to the best of your ability. There’s a general thought in (some of) the ME/CFS community that going through 'boom and bust' cycles can worsen ME/CFS over time. There are a lot of threads/posts about that aspect in the forums if you'd like more info.

 

[gregh286]

mild CFS alright.
the water sloshing around i get also, like cells abandon absorption of fluid.
low VO2 max, easily lactic.....some POTs...all textbook ME.is it raynauds or your have numb feeling in hands

 

[justy]

I had a long remission a number of years ago, for about 9/10 years to near normal functioning. During that time i believe i still have very mild M.E. I could exercise, but always felt really exhausted afterwards and had a lot of issues with not being able to improve stamina or get fitter.

I eventually relapsed badly and have now been moderate, then severe for the past 9 years.

 

[manasi12]

Is your ANA checked ? Or any other autoimmune stuff ? Raynaud's phenomenon is especially seen in these conditions. Fatigue and some cardiovascular issues do occur with autoimmunity.

 

[.jm.]

Yes. rheumatologist tested for anything she could think of. It don't think the list was that exhaustive, but it was at least most of the common other causes. ANA was normal. Negative for celiac. Someone did some sort of test where they stabbed my muscles with a needle and listened to nerve signals when I moved them. Addisons/Cushings was tested out.

I've had Raynauds for most of my life. But there was a point a few years ago when it got worse and would happen in indoors, particularly if aggravated by some combination of exercise, hydration, and cool (but not cold) temperatures. My hands turns white and cold and I can't use them to ... for example, put a key in a door. Putting them under hot water to warm them back up you can see the blood flow back in as my skin turns from white to red in a pattern. Textbook raynauds.

I have talked to quite a few other athletes that went relativity suddenly from peak athletic shape to some sort of set of mild problems like mine. We all generally describe it as feeling like hitting lactic threshold after a few minutes and needing to stop.

Interesting that I'm not the only one with fluid problems. I've never heard anyone mention it. Maybe this is a symptom related to decreased blood volume shunting down intestines during exercise.

 

[ryan31337]

My own bias from POTS makes me think of stomach dysmotility when it comes to your fluid issues.

Just one of many possible explanations but look into gastroparesis and rapid gastric emptying, both are common in dysautonomia.

 

[.jm.]

There was a point in time then the fluid issues began. When I was racing two years ago, I had race fluid plans, water bottles on elite tables -- things that made distance racing possible. It clearly worked or I would not have been able to preform an that level. There were a few occasional runs during those seasons where I got sick and threw up water, but very few to the point where I may say it was normal. The constant problem with hydration during exercise really appeared in the last two years.

When I got fast in my sport four years ago, a few interesting adaptations happened:

1. I lost a bunch of weight even though I was eating plenty.
2. sweating dramatically decreased in mild weather. (hot weather was another thing, but in cool weather I barely sweat compared to the fountain of sweat I once was)
3. I was cold a lot.
4. raynauds got a bit worse.

 

[ljimbo423]

There was one brief episode of illness about a year ago that I'm starting to think predicts this whole thing. I was sick for a day or two with something that felt like food poisoning or Norovirus. It was while I was in Florida. The symptom timeframe doesn't match Zika, and there really isn't any lyme disease in Florida. Maybe it was echovirus and that is why it felt like stumach flu and was the trigger.

I think you might be on to something here. You might want to follow your gut instinct and look into dysbiosis and leaky gut.

This is a quote from Chris Armstrong, a leading CFS researcher, talking about intestinal permeability or "leaky gut" causing fatigue-

49 minutes 20 seconds in-

"When you've got bacteria promoting inflammation in the blood or in the body for along period of time, it exhausts the bodies resources by fueling this chronic immune activation and in turn eventually you get this fatigue or starvation phenotype that's occurring".

"Bacterial translocation is normal, it does happen to everyone, but its the type of bacteria that you are bringing and the level or the number of them that might be posing a threat".

Jim

 

[.jm.]

I know what google says, but what what really are the typical symptoms of echovirus? Is it a brief illness that feels like vomiting and diarrhea like norovirus or is it like a illness that makes your nose run?

Also what viruses cause a mild prolonged sore throat, maybe nasal drip. no fever, no cough.

 

[Art Vandelay]

There was one brief episode of illness about a year ago that I'm starting to think predicts this whole thing. I was sick for a day or two with something that felt like food poisoning or Norovirus. It was while I was in Florida. The symptom timeframe doesn't match Zika, and there really isn't any lyme disease in Florida. Maybe it was echovirus and that is why it felt like stumach flu and was the trigger.

Do you still get gut symptoms? If so, it might be worth considering an ongoing parasite infection. My health problems seem to have started with a stomach bug that I caught in Sydney (perhaps blastocystis and/or d.fragilis).

 

[.jm.]

I've had soft stools for longer than I can remember preceding fatigue onset by years. When I say soft... you know how your dog poos outside and you can pick them up and throw them out. Mine are piles of mush - not diarrhea, but mush. This preceded the fatigue.

I'm now on the schedule to see Chia. So some of this stuff will be on the list of labs he orders. I'm trying to work through a series of labs with one of my doctors here. I have HHV6 in progress. We screwed up the order code for hCMV, so we need to fix that and do it. Also need to add other viruses as noted.

what I really would like to request from this group is the test order codes for using a major american lab like Labcorp or Quest. My doctor will sign the orders, but I need to give him complete and accurate codes to use. I'll ask that in the appropriate forum group.

 

[Art Vandelay]

I've had soft stools for longer than I can remember preceding fatigue onset by years. When I say soft... you know how your dog poos outside and you can pick them up and throw them out. Mine are piles of mush - not diarrhea, but mush. This preceded the fatigue.

That's interesting. I've had what I'd term 'sticky stools' all my life. After getting the gut infection, I had more constipation, looser stools on occasion and smelly bowel movements. Also, it became very difficult for me to get through a full day of work, I was irritable all the time, my hair started falling out and I got insomnia. Playing sport was out of the question.

It was only after I caught EBV a few years later that I came down with full blown ME/CFS.

Hope your doctor and Dr Chia are able to sort it all out for you.

 

[manasi12]

Decreased sweating , worsened Raynauds and hypovolemia may be signs of small fibre neuropathy which may be post infectious. But I guess , drs have performed EMG and small nerve biopsy.

 

[ryan31337]

Decreased sweating , worsened Raynauds and hypovolemia may be signs of small fibre neuropathy which may be post infectious. But I guess , drs have performed EMG and small nerve biopsy.

And SFN is very common in POTS patients, with some recent evidence to show that IVIG can be quite effective treating this subset too.

You could have a thousand and one things going on @.jm. Personally I have found that a CFS/ME diagnosis is worse than useless for deciphering the mess that is our health. On the other hand a POTS diagnosis has opened doors to doctors experienced in complex illness, many of which have open minds.

Perhaps because there is more accessible, objective evidence of abnormality in OI doctors feel more justified for further investigation and referral. I imagine the stigma of CFS/ME also does not help. Once I got the OI diagnosis suddenly I was referred to GI, endocrine, neuro muscle, neuro sleep, allergists, physio etc. etc. I had none of this with a CFS/ME diagnosis for 20 years prior to POTS diagnosis.

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Edit: Just wanted to add, I appreciate you have had a battery of tests already but the difference could be a good physician with an understanding of complex illness vs a run of the mill physician testing for classic diseases, a category we as patients rarely fall into.