I genuinely cannot tell if this is CFS or my other health problems

[chippenstein]

I have a current diagnosis of hEDS (6 points of hypermobility), generalized anxiety disorder, C-PTSD, IBS, and a "seronegative, unspecified autoimmune disorder". I just had a sleep study which identified narcolepsy as well, but ruled out sleep apnea.

I have been fatigued as long as I can remember. I would describe it as my body feeling heavy or resistant to moving around. Some days I am fatigued but highly motivated and get a lot done. Other days, I am fatigued and it's a chore to drag myself around. It is not often that I can fall asleep spontaneously, but I do get spontaneous sleep attacks on par with the narcolepsy. I do sometimes get sore throats out of the blue, but I have a deviated septum with chronic sinusitis and these episodes correlate to when I can feel post nasal drip and congestion.

The definition of PEM is very hard for me to understand, and I know that is the "hallmark" that differentiates CFS from other fatigue-inducing illnesses. With my hEDS and anxiety disorders, a lot of things that I do can worsen my condition. I am very deconditioned and it is really easy for me to overdo it. On an average day, my muscles fatigue from repetitive or stagnant motion (holding my arms up etc). Yesterday/last night I moved some boxes of cat litter a few times, carried one of the boxes across the apartment, went out for a few hours of socializing, and moved things in a closet to try to find some paperwork. Today, my fatigue is much worse than usual. I've fallen back to sleep twice. I don't feel like I'm sick, I just feel absolutely beyond drained/run down. I'm shuffling around like I'm 100 years old and talking quieter than usual. My muscles are also much grouchier with me today and I pulled something in my shoulder just leaning over to plug a fan in. I do not notice that cognitive or emotional expenditures worsen my condition beyond causing emotional overwhelm/hyperstimulation, which has been a theme for me since childhood due to my anxiety.

My anxiety recently decided that I have CFS. That may be true. The problem is, I do not know how to navigate about psychosomatic worsening of symptoms versus real ones. I also do not know if I can consider CFS as a diagnosis if I have not yet attempted to treat the narcolepsy. I will mention that I have been dealing with a horrific, drastic worsening of my anxiety since the beginning of September, and I can tell that depression is playing a role as well. The biggest issue I am having now is that I cannot prove, or disprove, the presence of CFS with certainty. As such, I am now afraid to even go for a walk, for fear it will elicit PEM and I will end up entirely bedbound. I know this is not a reasonable thought process, but it is what is happening for me.

Any and all input is appreciated. I've spent hours and hours for the past week staring at every piece of information, Reddit post, etc. and it has destroyed my psyche.

 

[poetinsf]

I am very deconditioned and it is really easy for me to overdo it. On an average day, my muscles fatigue from repetitive or stagnant motion (holding my arms up etc). Yesterday/last night I moved some boxes of cat litter a few times, carried one of the boxes across the apartment, went out for a few hours of socializing, and moved things in a closet to try to find some paperwork. Today, my fatigue is much worse than usual. I've fallen back to sleep twice. I don't feel like I'm sick, I just feel absolutely beyond drained/run down.

It could well be normal fatigue if you are severely deconditioned, or a fatigue from other condition. Socializing for a few hours can actually be exhausting for deconditioned people. Garden variety PEM usually last several days and accompany sick shitty feel, especially when you are sick enough to be deconditioned. For most patients in moderate/severe end of the spectrum, PEM is unmistakable; you know when you have it. That is not to say that there can't be different-feeling PEM. There could be, since we don't know exactly what PEM is. It is only defined as worsening of symptoms 12-48 hours after exertion, and ME/CFS is defined only symptomatically.

My anxiety recently decided that I have CFS. That may be true.

ME/CFS, as it currently stands, is a diagnosis of exclusion. If I had other conditions that may explain the symptoms, I wouldn't "decide" that I have CFS till I have other conditions fully treated. ME/CFS has no treatment, so deciding that you have ME/CFS won't bring you any practical benefit anyway.

The biggest issue I am having now is that I cannot prove, or disprove, the presence of CFS with certainty. As such, I am now afraid to even go for a walk, for fear it will elicit PEM and I will end up entirely bedbound.

I think that is a rather easy problem to solve. Assume that you don't have ME/CFS till you and your care provider are convinced beyond doubt that you do. As much as some people are afraid of PEM, PEM is not the end of the world. Garden variety PEMs always come to an end without discernable permanent worsening of the condition. At least that has been my experience.

 

[Jonathan Edwards]

Hi @chippenstein,

We have a rule that we do not advise people on their care as individuals. Nobody here can know just from what you say (which is pretty complicated with five diagnoses already) what your problem is, what to call it or whether it is likely to follow similar patterns to their own. I do not have ME/CFS (what you are calling CFS, which is OK), but am here as a retired professor of medicine interested in trying to help move research forward. Having spent a lifetime listening to people describing their illness I would n-ot begin to try to advise you, based on what you say, even if I was your official doctor. I would need much more information.

That said, I tend to agree with @poetinsf that whether or not any of your symptoms should be called CFS probably is a red herring. CFS is not 'another disease' that might do you new harm. It is just another overlapping way of describing various collections of symptoms, including maybe some of yours. It has implications about feeling worse after exertion but the general rule is that each person finds out for themselves how that works for them and that all anybody can be advised - regardless of diagnosis - is not to push through misery because some therapist has told you to.

 

[boolybooly]

I will mention that I have been dealing with a horrific, drastic worsening of my anxiety since the beginning of September, and I can tell that depression is playing a role as well.

I am no a doctor either, I am qualified as an FE teacher in sports sciences. It is not possible to advise you personally as above, not least because I have no idea how to diagnose CFS and I dont think anyone has, truth be told but I think I can say it sounds from what you have said as if SAD (Seasonal Affective Disorder) might be worth googling.

Speaking about my own experience with SAD like symptoms in previous decades, I found light therapy helpful, which I arranged by having a brightly lit aquarium in my front room which greeted me every morning. Definitely helped. Apparently seeing some bright light for a few minutes every day is therapeutic for SAD.

I do hope you find what you need to improve your situation.

 

[Haveyoutriedyoga]

I know it's hard to do this when you have the diagnoses that you do, but try to listen to your body - how you feel a few days later is relevant too. Many people with 'mild' MECFS can manage walks and more, so if you do have that then a walk doesn't necessarily mean you're making things worse. As others have said, just don't force yourself through misery in the name of 'therapy'!

 

[Creekside]

After an event that seems to have changed my gut microbiome, my muscles get sore from activity much quicker than they did before. It's not deconditioning; I was active before that, but the threshold and/or pain level and/or endurance changed abruptly. Different foods make the effect stronger. I can't say for sure that it is due to ME, although that seems most likely. ME is a disease with a wide variety of individual responses and symptoms. Your muscle problems might seem similar from the description, but they might have completely different biological/molecular causes.

A few PWME do crash severely and long-term from overexertion. Some PWME don't get PEM from physical exertion. Some PWME don't get PEM. Some PWME get PEM, but it never last more than a few hours. Some people get hit by vehicles while walking on the sidewalk, but that doesn't convince everyone to hide indoors 24/7. IMO, possibly having ME does not mean that slightly exceeding your exertion limits is highly likely to result in being bedbound. There are people who did overexert and end up deeply regretting it, but there's no way to predict who that sort of thing will happen to. I'm just guessing that the number of people who ended up bedbound due to mild walking is very low.

As Haveyoutriedyoga said: listen to your body (and not stories about worst-case scenarios).

 

[EndME]

Some PWME don't get PEM.

I think that starts the philosophical debate on what ME/CFS entails because definitions such as the Candian Consensus Criteria certainly require PEM for a diagnosis of ME/CFS. Does anbody have a good argument that a definition of ME/CFS not involving PEM is a meaningful clinical category?

 

[Tia]

A lot of the diagnoses you've mentioned can cause fatigue. It's impossible to know if you do have CFS as well. But if you focus on trying to manage your other conditions, that can only help if you do have CFS.

And if you do have CFS, there's not much you can do about it anyway. In my experience, if I go for a walk and get some PEM, it's annoying but it's not the end of the world. The only thing that has had a long term impact on me is pushing myself to do prolonged, intense, aerobic exercise. So I guess if you want to be cautious, my advice would be to avoid extreme exertion until you are confident that it is something your body can manage. i.e. don't suddenly sign up to do a marathon or engage in prolonged aerobic exercise unless you've been able to slowly build up to it. But don't let anxiety that you might have CFS stop you doing things you are currently able to do.

 

[Creekside]

Does anbody have a good argument that a definition of ME/CFS not involving PEM is a meaningful clinical category?

I used to get PEM and now don't get PEM, but still retain the other symptoms of ME. Also, PWME generally don't report being completely ME-symptom free when not in PEM, so something is generating those symptoms. I consider PEM to be not part of ME's core mechanism, but rather a separate mechanism that is activated by ME, and in turn worsens the other ME symptoms.

For an automotive analogy, maybe a faulty turbocompressor which gives you poor performance all the time (ME core dysfunction), and a partly-plugged muffler, which plugs up more at higher power levels (PEM). Replacing the muffler would cure the worsening at high power levels, but your vehicle would still be sluggish at all power levels. If the turbo flaw causes the plugging of the muffler (soot, metal flakes, whatever), then most people with flawed turbos would suffer from Plugged Exhaust Malaise. Some might still have sluggish performance even if they don't have a plugged muffler.


Does anyone report only having PEM, but are fully healthy and energetic when not in PEM?

 

[poetinsf]

Does anyone report only having PEM, but are fully healthy and energetic when not in PEM?

I may fall in that category, at least when I'm on the road. I can climb mountains as well as anybody, till I try to push my pace and pay the price the following days. I think recovered patients often fall in that category.

I've been actually thinking about your case whenever I push the idea that PEM is the essence of ME/CFS. One possibility is that, in microglial hypothesis for example, some are stuck in activated state and none in primed state. It would be reverse in my case: some are stuck in primed state, but none in activated state. Typical ME/CFS would have some in primed state and some activated state, because some of those in primed state are constantly activated from ever-present insults. (And that is why I've been calling PEM the essence of ME/CFS.) I'm using the model in purely abstract sense here, btw: "microglia" can be substituted with whatever is causing ME/CFS symptoms.

Edited for clarification x 3

 

[Creekside]

I may fall in that category, at least when I'm on the road.

No brainfog, aches, malaise, or other ME symptoms when not in PEM, but they occur when in PEM? We really need a biomarker, partly to know who has true ME and who has some ME-like symptoms and responses.