MTRJ75

I get internal shakes/tremors when I'm either too active or sitting upright without anything to lean on too long.  Can sometimes coincide with PVCs when really bad. 

I think there has been at least some improvement on this symptom over the years, but can't put a finger on why exactly. Perhaps Corlanor, but it's not something that's gone away completely either. 

I've heard it referred to as an adrenaline dump too. It FEELS more like a surge though. The feeling can also be very hard to explain though too. 

7 hours ago, Sarah Tee said:

After some digging, I found that the technology used is photoplethysmography.

What's the reliability of this tech? If it's anything like a FitBit, it's not worth much. Never used to accurately capture my heartrate. 

I saw this on DI's FB page yesterday, but haven't had the chance to look into it yet. A $50 per month subscription would be unfortunate and price a lot of the people it would help out. 

7 hours ago, Sarah Tee said:

Can anyone tell me what would constitute an autoimmune presentation?

Slides and graphs with PowerPoint? 

More seriously though, some look for bloodwork (most rheumys), the better doctors will recognize the symptoms of a condition and understand that not everyone has the markers. It took me several doctors and years to get anyone to recognize this wasn't an anxiety/depression issue. They almost had me convinced my mind was subconsciously doing all this to my body at one point. 

Same reaction. Heavy sauces are another culprit. 

Pretty much any sizeable meal (more than a few bites) is going to affect me while digesting over the next few hours, but the obvious culprits (gluten, carbs) are going to be worse offenders to the point where it's sometimes a concern. For example, I made the mistake of eating white potatoes too late in the evening last night after work and I ended up sweating with my heart pounding with a somewhat elevated rate for a decent chunk of the night until the early AM. 

5 hours ago, amiascending said:

Why is it that the only doc who thinks it ISN'T a psychiatric issue the psychiatrist? 

Ironically enough, this actually got me disability. The judge was convinced by independent doctors that it was a mental issue until they brought in a psychological specialist who actually knew a bit about the disorder and was able to state that this a very real and difficult physical disorder. 

I know traveling out of state can be very difficult. A lot of doctors have been more willing to do tele-health or video appointments since COVID. If you have to travel, perhaps it will only be for an initial consult or perhaps you can do a consult from home to see if it's even worth traveling. 

Not GI symptoms specifically, but sun exposure causes whole body muscle cramps and aches for me, which then in turn causes extreme sweating. If I'm dealing with muscle aches or exhaustion BEFORE the sun hits me, it's pure h*** afterwards. Especially if it's earlier in the day. The hotter the worse. 

Sure, I always feel numbness or "lightness" in certain areas where I feel more blood should be flowing. The worst is when I have to crouch to clean up after the dog in the backyard. The only thing I can think that helps even a little bit is trying not to change positions too quickly and standing still too long can be a problem too. 

Mike is on point about the carbs being a major issue. Even gluten free pasta or white potatoes create havoc for me. 

I have some of those issues like fatigue and palpitations after eating. In fact, having my worst day of palpitations in years today & wondering if it's mere irony that people have told me this is their worst allergy day in years. I also frequently feel like my body is heating up after eating. And of course, the normal GERD & IBS symptoms. 

Could the flushing be an MCAS thing? Are you eating anything not in your usual diet? Would you consider an elimination diet? 

The other stuff is not anything I'd even want to venture a guess on. Far outside my small base of knowledge. 

Yeah, that's the issue I meant with "universally" available. You'd have to travel to one of the few specialists in the country. 

Got sidetracked with my other issues, but will start calling doctors on this Monday. I'm really beginning to fear I have the triple whammy: autonomic, small fiber & peripheral neuropathy. I can do some things, but very little without severe consequences. My arms, chest, stomach, legs all light up after minimal to moderate physical exertion. 

I think there have been some more in depth studies, but I'm not aware of any universally available tests that measures much more than heart function. I'd be interested in this too, both from a muscle exhaustion & neuropathic activation sense. I really get lit up all over my body with any kind of extended exertion (ie light cleaning). 

On 4/20/2023 at 2:33 AM, Sarah Tee said:

@MTRJ75, when will you have your biopsy? Is there a long wait?

I haven't been able to schedule it yet. Been dealing with a few additional, mostly non-related health issues the last couple of weeks. 

None. It's all the same price up to 6 mg at the pharmacy I chose. 

Yeah, that was another thought. Been trying to figure out if I even want to do it or not. 

I had some success with 4.5 mg of LDN, but I don't know whether it's been less successful at 5 mg (last 3 months) or something else is causing my recent setbacks. I still believe it's provided great benefit, even if I have to go back down to 4.5 mg, but it hasn't solved all the issues that keep me non-functional on a daily basis. 

He never even mentioned IVIG as a possibility. 

I'm not even sure what we're going to do after this. It's funny that he mentioned the best medication he knows of for this is LDN, when I introduced him to LDN about a year or so ago. 

After failing at exercise attempts spectacularly this year & then having  my worst flare up in over a year due to a combination of physical activity and brief sunlight, my neurologist is sending me for a small fiber neuropathy biopsy. 

Although, he says that there's not much that can be done about it even if confirmed. 

Is this true? 

It makes the most sense, since I wake up burning like I was baking in the sun over-night and exercise leads to that same burning and cramping, right before sweating and adrenaline dumps. This might be the largest obstacle for me right now. 

Public Service Announcement

I don't think there's a workaround to this other than not waking up. 

Do you take anything before bed for sleep? I know melatonin will help get me to sleep, but harder to get out of bed. 

This has become a popular theory in recent years, so I'm happy to see them continuing to make progress. 

This, in the discussion portion of the paper caught my eye, considering there's another recent thread concerning the possibility of enlarged hearts in some of us: 

Quote

We observed downregulated expression of TSP-4 in POTS. In vivo mouse models have shown that TSP-4 deficient mice develop pronounced cardiac hypertrophy, fibrosis together with left ventricular dilatation, and depressed systolic function²⁴. These defects in adaptation to chronic pressure overload, result in chamber dilation, reduced cardiac function, and increased cardiac mass²⁴.

And if these AI processes are triggered by persistent viral assaults, as also asserted in this paper, it seems like lots of work is being done to more easily identify that as well. 

Fatigue and deconditioning. This paper hits all the marks. 

There is the strong belief that viruses like EBV that remain active in the body are responsible for more chronic illnesses in life. 

I once went to a functional practitioner who claimed that they had cured a patient's issues by clearing and old strep virus still active in his knee. 

With that in mind, I find this passage in the newest Health Rising blog fascinating. 

https://www.healthrising.org/blog/2023/02/19/pathogens-long-covid-chronic-fatigue-syndrome-proal-heinrich/

Quote

She noted that researchers are not good at finding viruses buried deep in a patient’s tissues that have adapted themselves to hide out from the immune system. Because the genetic material from the viruses tends to show up less and less in the blood over time, Proal stated that we have to get into the tissues to see if they are present.

These viruses don’t need to replicate to be causing problems. They can change the gene expression of the cell. By stealing resources from them, they can inhibit mitochondrial function. They can express proteins that interfere with the ability of an immune cell to fight off other viruses. (Over the past decade, an Ohio State University team has been demonstrating that a protein produced by EBV called EBV dUTPase may be doing just that in ME/CFS.)

Michael VanElzakker, Proal’s partner at PolyBio, hypothesized that in chronic fatigue syndrome (ME/CFS) small viral infections around the vagus nerve could be impacting its ability to transmit immune signals to the brain but, short of an autopsy, finding evidence of those viruses has been difficult in the extreme. Biopsies are limited to certain tissues and even then can be misleading as only small areas can be assessed. 

If you want to read more about the new tech to find these viruses, read the blog. Unfortunately, it doesn't seem like they have much in the way with clearing all these viruses when they do find them yet. 

Yes, when that heart isn't doing it's job, that's where they'll step in. But for most, the problem isn't the heart function itself.