Possible to have CFS without Orthostatic Intolerance? Is it possible I have something else?

[Marcel G]

Hi everyone,
I’ve been struggling with fatigue issues for the last 2 years. I’m 51, and was pretty active before this baffling thing hit me. ( I played ice hockey, went to the gym regularly, went hiking, etc) I’m looking for help here because as everyone here knows, ME/CFS isn’t well understood by very many doctors, and trying to research this yourself is exhausting, especially when you don’t have a lot of energy for it.

I'm putting my questions at the top, so you don't have to read the whole post. I've put my symptom history down below. I’m hoping someone on here can help me with these questions:

1. - is it possible to have CFS without Orthostatic Intolerance? My understanding from reading about Dr. Cheney and Dr. Rowe is that OI is the main common symptom.
2. When doing the standing test, do you take the averages of BP and HR? Or do count individual measurements?
3. - how consistent is the exertion limit that causes PEM? is it possible to have a relapse where your exertion limit suddenly becomes lower?
4. or can you have a PEM triggered by a build up of exertion and stress over several days or weeks?
5. - can the aerobic dysfunction with CFS worked on a graduated scale or is it an on/off kind of thing? My understanding is that people with CFS have serious trouble with aerobic energy generation in their mitochondria, so pushing their bodies into aerobic exercise causes metabolic issues and muscle pain (which I don’t get) and PEM. Since I was able to do moderate aerobic exercise without issues in 2021, maybe I don’t have CFS but something else is causing my fatigue?
6. - is tingling in the body a common symptom of CFS? (mostly arms and legs, sometimes in the face. some numbness in pinky fingers) or should I be looking at something else?
7. - should I push my doctor to send me to a neurologist to make sure I don’t have something like MS, or Cranial Cervical Instability or some kind of stenosis in my neck? Or Small Fiber Neuropathy?

My symptom history/Context:
It started in February 2020 (maybe January, not sure), I started seeing doctors in August 2020, and after a lot of testing I had come to the conclusion that I have CFS, since the doctors didn’t find any reasons for my fatigue, diarrhea, dizziness/lightheadedness, exercise intolerance, brain fog, and worsened anxiety. Oh and sleep issues, but I was having those before this started.

The only things that turned up were A) what I understand to be diastolic dysfunction (E/A ratio of 0.89 on my echocardiogram), but none of the doctors thought that was important. I also didn’t know that a low E/A ratio was connected to CFS until recently. And B) I don't have sleep apnea, but I do have some hypoxic events while sleeping.

By mid last year, after about 18 months since the beginning, I had recovered enough to be able to exercise 4 or 5 times per week. This included aerobic exercise (normally 35 minutes on the elliptical), swimming, golfing, and weights. I still felt like there was a limit on my exertion, but I was fairly functional if I’m careful about my diet and sleep hygiene and limiting my stress.

However, recent changes have made me rethink my conclusion that I have CFS.
Recent changes and reasons I’m questioning whether I have CFS:
- in early January, I had a fatigue crash a couple of days after playing golf, which had never happened before. I missed a week of work. I felt like my exertion limit had suddenly changed. Yes, golfing is 4 or 5 hours out in the heat (I currently live in a tropical country), but isn’t aerobic exercise, and I went fairly frequently through 2021 without any issues.
- And I began to wonder if the crashes were really caused by exertion, or if stress or some other factor was involved.
- I also did not recover as quickly as I had from the crashes I experienced in 2020. It’s been almost 2 months, and I’m only back to a 20 minute walk as my limit. I did catch a cold of some sort in there (I had2 PCR tests so it wasn't Covid) and also got my booster shot, which also made me tired and may have delayed my recovery. I can work again now (part-time), but still feel more tired than I did for most of 2021.
- about 4 weeks ago, I started to notice tingling in my body. Mostly in my hands arms and legs but also in my back and face. Sometimes it’s almost a numbness in my pinky fingers and toes. I usually only notice it when I’m lying down or sitting.
- I read about the NASA standing test, and yesterday tried it out at home. I didn't experience any symptoms, so I figured I probably don't have Orthostatic Intolerance. I’m able to stand for 10 minutes against a wall without having any symptoms, and my HR was pretty steady at 80 bpm. BP went up to ~115/85 on average.
- Update: I just read the Home OI test page on this site, and discovered that I my results might actually be mixed: my lying down BP was 109/72 with 60 HR, and the first reading when standing was 117/106 with 91 HR. That one measurement would indicate borderline POTS (+31 HR) and Diastolic Hypertension (+36 dBP) and low pulse pressure (11), however, all subsequent measurements averaged 112/85 with a HR of 82. The lowest pulse pressures were 19,20, and 22.

Sometimes when I get up off the couch I get dizzy, but it’s not consistent, so I don't think I have OI.
- I realized that I have not been checked for neurological or autoimmune issues like MS, so that’s not been ruled out yet. My family doctor doesn’t think I have MS. My eyesight is fine, and I have no issues with walking or coordination.
- I’m also not sure how much I was tested for autoimmune factors. My ESR was low, and I was checked for EBV in 2020, but I guess I’ll have to pull out the lab results from 2020 to see.
- I also realized that having a crash wasn't always consistent. One hiking trip would cause a PEM reaction, but another one a week before didn't. Sometimes if I pushed myself too much, I’d be really tired for a few days and then would lower my exertion levels, and other times I wouldn’t notice any issues.
I'm a Canadian currently located in Jakarta Indonesia, and the testing facilities here are more limited than they are in North America, so to get more detailed testing done I'll have to convince my doctor to send me to Singapore to see a good neurologist or specialist.

Thanks in advance,
Marcel

 

[Creekside]

- is it possible to have CFS without Orthostatic Intolerance?

Certainly. I have ME without POTS or OI. I don't recall seeing an estimate of how common it was among PWME, but it's definitely not a defining symptom.

- how consistent is the exertion limit that causes PEM? is it possible to have a relapse where your exertion limit suddenly becomes lower?

It's quite inconsistent, and there are triggers other than exertion limits. MY physically-induced PEM seemed to trigger on physical activities that used my muscles in atypical ways. For example, it would take about 40 km of bike riding in hilly terrain to trigger my PEM, but less than a minute of washing windows or climbing a ladder would trigger PEM. I think those activities damaged muscle cells (microtearing) which in turn activated my immune cells, and the cytokines from that activated my glial cells, which resulted in my PEM.

Yes I've heard other people report of significant changes to their triggering levels. PEM does vary over time. I actually managed to cure myself of PEM by taking cumin (cuminum cyminum) for ~2 years (it worked as a 100% effective PEM blocker during that time). Other people have tried it, but only a few have reported mild benefits, so it's not a general treatment/cure. So, now I still have other ME symptoms, but am PEM-free, so PEM isn't an absolute requirement for having ME.

My understanding is that people with CFS have serious trouble with aerobic energy generation in their mitochondria, so pushing their bodies into aerobic exercise causes metabolic issues and muscle pain (which I don’t get) and PEM.

It's common for PWME to have problems with aerobic activities, but not essential. I didn't have any such problems. My opinion is that a lot of the 'energy limitations' are neurological, making people feel that they lack energy despite normal levels of ATP production. I had neurologically-perceived muscle aches, but I'm pretty sure that there was no physical problem with my muscles.


As for further medical tests, that's a personal choice. If you think one of the other possible diseases fits your symptoms well, go ahead. My experience is that doctors tend to test for really common disorders, and don't want to bother looking for uncommon ones.

 

[Marcel G]

Thanks for the helpful answer.

as I read more and more about this, it really does seem to involve problems with the immune system and the nervous system at the same time: cognitive dysfunction, IBS , tingling in my limbs, anxiety, etc.
But is it the nervous system messing up the immune system, or vice versa?

there’s so much to read and so many competing theories, and it’s tiring doingso much research.

a couple of nights ago, after a day where I was really tired and had had bad diarrhea in the morning, my sleeping blood Spox dropped really low, at least according to my garmin watch. I know the watch isn’t super accurate, and most nights I dip down below 90% for short periods, but this was 2 hours below 85% and 45min below 80%. I don’t have sleep apnea, and my breathing rate was consistent throughout.

I woke up with a splitting headache, which is really rare for me, so I’m going to try to find a fingertip Spox monitor that can record overnight, just to verify that the garmin isn’t totally out of whack.

 

[Creekside]

But is it the nervous system messing up the immune system, or vice versa?

They are interlinked, so it could be both. BTW, we don't have "an" immune system; we have several that are separate but work together. There's the immunoglobulin system (several subsets), the t-cells, and the glial cells (nervous system). A fairly new discovery is that some endothelial cells (blood vessel lining) act as an immune system too. Activate any of these systems in the body, via infection or injury (including muscle microtears from exertion), and the glial cells will activate and affect brain function. Those changes in brain function may in turn alter the body's other immune system responses. It's all interlinked and complicated.

Testing clear of microbial infections is no guarantee of not activating the immune systems, since some infections are stealthy, hiding in limited locations in the body, or not releasing markers into the blood, but still producing some irritating proteins inside cells. These sorts of hidden infections can make ME symptoms worse. They can be difficult to detect and difficult to treat, so it's not as simple as going to a doctor and getting a prescription that makes you feel better a few days later.