MTRJ75

Never figured out a trigger, but they've declined substantially over the last year or so. They can still easily be trigged by diet, congestion or getting my heart rate up, but I can't figure out what exactly helped diminish them. I did start Ivabradine/Corlanor about a year or so ago too, so there may be some connection there, but I don't think it was immediate. LDN has helped in some areas, not sure if this was one. 

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The authors suggest these patients may be continually regenerating their small nerve fibers but are still experiencing pain because their nerve fibers are under constant attack. They also proposed that the waxing and waning symptoms sometimes found in FM – and one could certainly include ME/CFS here – could reflect this process of all-fiber dieback and renewal.

https://www.healthrising.org/blog/2022/04/29/natural-killer-small-nerve-fibers-fibromyalgia/

The above is something I've been wondering for quite a while, a possible cycle of perpetual damaging and healing and then damaging again. 

Here's another one. I tell them to take their hand and smack a sturdy table or counter top. The ringing they feel in their hand afterward is the same thing I feel throughout my entire body after physical activity, which is the inability of my nervous system to shift gears. 

I often say that if I didn't have it, I wouldn't understand it either. I can't imagine trying to explain this to my younger, healthier self in a way I would have understood. I often have great difficulty trying to form a picture of symptoms that a non-dysautonomic individual could understand. I'll often try analogies (like an old car in cold weather or dropping on a roller coaster), but I'm not even sure some of these symptoms have words because it's not really ever pain in a way most people would understand. 

On 4/29/2022 at 3:00 PM, Sushi said:

Thanks again. I have an update: I was able to contact the electrophysiologist who would do the ablation--he has done more ablations for Afib than anyone else in the country and is very familiar with working with the autonomic ganglia in the heart. He felt that ablation would not affect my dysautonomia and will discuss the options we would have with me before I go into the procedure. 75% of his ablations are done on patients with complex medical conditions that put them at higher risk, so he has seen everything. If all goes well, I will be scheduled for sometime this summer. It would involve travel and one night in the hospital so it has been a big decision, but it feels like the right one. After 6 years of medications with significant side-effects (one was potentially fatal) I have had enough of these drugs! 

It sounds like that's really the best you could hope for in a doctor. Good luck. 

I can say both that I've been on Corlanor for probably over a year now and that my ectopics, which have been really bad at points have been less severe over the last year or so (though still torturous on occasion). I can't definitively say this is why though. 

A good portion of my symptoms, but not nearly all, are when my heart is beating at a normal rate. 

I've been trying to be more physically active (well within limits though), but still running into a lot of similar issues. 

- internal shakiness once I sit back down again. 

- muscle twitching after being active

- PVCs/ectopics increase when heart rate elevates. 

Anyone else attempting to increase their physical activity levels running into the same issues or know how long they take to resolve? Should I be taking any supplements before or afterward? 

Everything is all over the place and inconsistent, no matter what measurements doctors use to diagnose. Sometimes they just have to catch you at the right time to give you the correct one. 

You've mentioned CFS/ME and Autoimmune. Both of those things frequently coincide with POTS. 

Think of it like three invisible intersecting circles below: 

Autoimmune Condition                             CFS/ME

                                          POTS

And now in between those circles are all your symptoms. 

A lot of times it really doesn't matter what causes your symptoms inside this giant mess because whatever works to take them away may be similar. It's not like there's one medication for high heart rate for POTS and another for CFS/ME. Most POTS medications are off label anyway. 

While I don't think you can rule out POTS and it even sounds likely from your story, just believe that it can get better. It can be a difficult and long journey and the beginning is often the worst, but there is help out there, There's more information out there (likely thanks to COVID). More doctors are becoming aware. Don't lose hope. 

12 hours ago, Pistol said:

Thanks @MTRJ75, very interesting! You have the best articles to share!

Amazing I can comprehend some of it too with all the grey matter I'm losing. 

Read something in the latest Health Rising blog that brought me back to this post: 

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The connections between the olfactory and limbic regions might be able to explain why the limbic region of the brain gets hit so hard, not just in long COVID, but in post-infectious disorders like ME/CFS.

...reductions of grey matter in the orbitofrontal cortex and insula have been found in chronic rhinosinusitis – which the authors called a post-infectious state.

https://www.healthrising.org/blog/2022/03/20/coronavirus-brain-shrinkage-long-covid/

Yup. Just today, I felt like I was on fire and I was sweating, but my skin was actually cold to the touch. Frequently go back and forth between sweats and chills too. The over-heating is often followed by a dryness and nausea too. Never really results in a fever though. 

I'm currently taking 10 mg Propanolol in the morning (because my BP tends to run slightly high) and 2.5 mg Ivadbradine in the evening. This seems to have controlled my heart palpitations the best. I still have them (skipping, racing, pounding), but not as frequently or symptomatically.

I have noticed that my resting heart rate has been a bit lower at night, sometimes barely dipping below 60 while lying in bed. Not sure if it's gone below that while sleeping. 

See if you can start on a lower dose and see what happens. 

How did this every resolve @Sunburn ?

Bumping because I had this come up again in visit to cardiologist. She was so unconcerned that she didn't even mention it. I merely saw that the ECG mentioned an abnormal heartrate with inverted T waves in the visit summary in their new online portal. 

I did have a very normal cardiac MRI in Dec '19, which may be why she's not following up on this and even pushed my next follow up from 3 months to 6. 

Apparently, this may be a frequent occurrence in CFS/POTS? 

Yes, I've been told I don't know when to keep my mouth shut. 

I'm sorry, I was just reading Mike's Power of Laughter post. 

Just dropping another autoimmune study here: 

Small fiber neuropathy & autoimmunity

Autonomic pathways & autoimmunity

https://link.springer.com/article/10.1007/s10286-022-00854-5

18 hours ago, MikeO said:

@MTRJ75 if it helps i am right with you today so at least your not alone. My heart has been running at 120 BPM all day, i feel weak as all heck, blurred vision, no appetite list goes on. Oddly i have a really good BP 130/81. 

The suffering of others certainly doesn't help or make me feel better. Something like this procedure (or any other solutions) working for similar problems would make me feel much better though. 

Well, my fight or flight/SNS seems to light up erroneously, through physical activity. Though it's not due to anxiety in most cases, it's very similar symptomatically. And, of course, having this type of illness is pretty d*** traumatic in itself. We're always bracing or on the lookout for disaster. 

7 minutes ago, Hoosierfan said:

I’m having this done by an experienced pain practitioner in about 3 weeks.  I have borderline POTS and syncopal events about once a month.  
 

I have other comorbid conditions (24/7 dizziness not related to my BP / POTs) and a sunburn pain all over my body.  And, as many of us do, significant anxiety.

I am checking in with my neuro to make sure this is ok to do; and also my immunologist.   The doc I’m seeing is very experienced with stellate blocks, so I know I am in good hands.  
 

i will keep everyone posted. 👍🏻

Yes! This is what my burning muscle pain feels like. Sunburn!

Good luck. My neuro did not think it would be helpful. 

So this is the thread where I discussed how I ended up with a favorable disability decision (I am also in NJ). It basically came down to a question my lawyer asked the vocational expert, a form he asked my neurologist to fill out and the luck of getting a psychiatric expert that understood the condition to be physical in nature.

I can additionally provide the name of my lawyer (in Ohio) if allowed. Or PM if it's not. It will certainly take some time though if you haven't started the process at all yet and I mean that in months and potentially years. 

TY. 

Most of my meds predate these symptoms. Do you remember what type of meds it was for you. Think I was only on Sjogren's med and maybe beta blockers (now very small dose) before this first became a problem way back when. 

7 (on a scale of 10) so far...

It works, it hits the right muscles, but I'm not seeing any amazing transformation yet. Sometimes it actually hurts so much I have to stop it a minute in. Probably worth it. 

Neuro believes that most of this is coming from the brain (fibro/CFS) rather than damaged or destroyed nerves/muscles. The problem is that even if this is an auto-immune process, he can't prescribe an autoimmune solution (IVIG, etc...) as a neurologist and since I don't show up for any AI bloodwork....

We're kinda stumped here. 

Again, today, a small amount of activity (felt ok - or as okay as I get - before and during it), changing bedsheets and vacuuming a small room, led to every autonomic process in my body (sweating, nausea, digestive track, heartbeat, blurred vision) lighting up as soon, but not before, I sat down again. My body simply can't downshift for some reason. 

Actually, my BP has been riding slightly high lately. 

I don't know why I sweat more while on the phone either, but there it is. I think any little stress on my body, that causes sweating is now causing nose running too. 

Feel like I'm carrying around an extra 100 pounds on my shoulders sometimes. Ordered and just received a "Shiatsu Back Shoulder and Neck Massager" from Amazon and I think it may be just what I'm looking for. Digs into all the right muscles (coat hanger). 

Could only stand it for a few minutes first time I used it. Feel like this this will either be a miracle or kill me. Will let everyone know either way. Well, actually, only if the first thing happens.