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brainchild

POTS, FM, PEM, SEID - how to know what’s what

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I’m hoping some of you can help me figure out how to differentiate all these conditions. I have been diagnosed with POTS (via TTT) and FM (by rheumatologist and neurologist via exclusion of other conditions). I have a years long history of pain episodes which mainly come on in reaction to food sensitivity. I also get pain and fatigue from exertion. I went for a leisurely ten minute swim this week and had to nap afterwards for 2 hours and was done for the rest of the day. I’ve had several times when I’ll be doing some activity and I get a warning sense from my body that I need to stop. If I don’t, then I get a pain flare that may/not come with exhaustion. I don’t think I generally have fatigue. This is becoming more common. I was able to swim for an hour daily  back in June. Then I vacuumed the car and pain flared for days  

Can this all be explained by POTS? Is there some way to differentiate? I keep hoping that I can link everything to POTS because it’s the one syndrome that I can prove that I have. Pain is listed as a symptom of POTS in multiple publications, but I can find precious little of what type of pain and it’s pathophysiology. 

I’ve had full ANA and GI autoimmune panels which all were normal/negative. All my inflammatory markers are super low. I know that autoimmune conditions can be elusive. 

I’ve been on propranolol, trioral (water/salt), and elevated head of bed since February. I’ve got suspected MCAS and do better with H2 antihistamines, haven’t found an H1 that does anything yet. Quercetin and vitC don’t seem to have an effect. 

My main complaint is the pain. It’s always there with intensity from mild to excruciating. Its a whole festival of pain: localized, migratory, burning, dull, stabbing, flu-like, pressure. Its refractory to every medication I’ve tried; from cymbalta, to low dose naltrexone, to Tylenol 3 and another dozen in between. 

I also get serious brain fog: unable to find words, forget what I just read, can’t think straight. This comes and goes throughout the day. 

I have never passed out. I do get pre-syncopal symptoms if I stand for too long. 

I know that exercise is part of POTS management. I’m doing what I can without poking the beast and causing more symptoms  

I’d really appreciate suggestions on how these symptoms relate to POTS and others’ experiences and recommendations for testing etc.

FM - fibromyalgia

PEM - post exertional malaise 

SEID - systemic exertion intolerance disease 

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Good question! In my first years of realizing that there was something really wrong with my health, things I heard and read pointed towards dysautonomia and this was my first diagnosis. I discovered that it was often associated with mitral valve prolapse but only learned later that the connection was probably Ehlers-Danlos syndrome. Later, through discussions with my autonomic specialist, I realized the connection with SEID, more commonly known as ME/CFS. Now I regard ME/CFS as my primary diagnosis with Ehlers-Danlos as a co-morbid diagnosis and dysautonomia as a very common symptom of ME/CFS (though you can have dysautonomia by itself). I don’t have POTS but rather neurally mediated hypotension. PEM is a primary symptom for me and makes strict pacing essential. I don’t have fibromyalgia now though I did in my first years of symptoms.

So none of this crystal clear but all of it seems to be related. Mast cell activation also plays a part for many. As I see it POTS is the body’s attempt to work around orthostatic intolerance as is NMH and PEM seems to be the result all these metabolic screw-ups. Brain fog may be partly due to low blood volume and hypoprofusion of the brain.

All this is super complex and so far has mostly stumped researchers though there is a lot of interesting research in progress. I am hopeful but we may have to wait a few years for more effective treatments. Researchers have figured out some of it but not enough for us to have more than symptomatic treatments available right now.

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@brainchild - I have hyperPOTS and when the symptoms first started 10 years ago generalized joint pain was the first thing I noticed. I had complete AI work-up by rheumatologist and it was negative. Whenever my POTS flares the joint pains return, so I do believe it is related. Literature does mention joint pain as a symptom of POTS but I am not sure what the mechanism is. The pain you describe does sound odd - Fibromyalgia usually is a certain type of muscle ache that sufferers often can recognize and can be reproduced by trigger points.  My personal thought is that it could be related to dysautonomia. The orthostatic intolerance and post-exertional fatigue in my case are definitely from POTS and I believe is due to the constant stress of the body trying to adapt to orthostasis. Theoretically the body might respond with pain as well. I am aware of several members on this forum that deal with pain in addition to the many symptoms of dysautonomia.  I hope you find some relief once your POTS is controlled. I got better once the right medication combo was found ( I am on 12 meds and it took years to get them right ). Best of Luck - be well!!!!

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The doctor explained my symptoms like this:

I have dysautonomia. POTS and sweat gland dysfunction are two diagnosable categories. They are symptoms, not diseases.

Somehow I have small fiber nerve damage caused at some point. This results in overactive, always-firing nerves. The brain sometimes interprets these random nerve signals as pain. Sometimes it's localized. Other times systemic. Other times its dysfunction like shaky hands or blood pooling, or light sensitivity, or bladder dysfunction, or or or...

I do not have MCAS, but I do better on H1 and H2 blockers. I didn't respond to chromalin. The H1 is for allergies. H2 is for GERD.

Like you, my AI tests all came back negative (except a slightly elevated anti-smooth muscle antibody). So autoimmune is mostly negative. 

I sometimes struggle to member that POTS, MCAS, ME/CFS/PEM/SEID are all syndromes that are buckets for doctors. If they can't figure out what's wrong, they toss a patient into one of the buckets. People can have the same syndromes because of different underlying causes, and therefore many different symptoms with the same syndrome. Not everything fits into the bucket (like my allergies).

Hopefully this helps...

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Update: I have been diagnosed with ME/CFS. I was seen at an infectious disease specialty office and had a bunch of viral panels done.

I’m being treated with an antiviral med and Celecoxib. The antiviral made me tired (sleepy tired was not an issue before this). The celecoxib made a huge difference - very surprising. I can now help with basic gardening - I can bend over and pick a weed without ending up crying from the pain. This is very exciting! My food sensitivities are better too. I’m going slowly with activity and foods, but remembering what I used to be able to enjoy and hopeful that this trend continues  

I wanted to update this post to encourage others to pursue more testing if it seems appropriate. I’ve tried so many meds for pain and (so far) I’m doing much better with meds that weren’t available to me without the further diagnosis. 

Wishing all peace and comfort. 

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@brainchild - what good news!!! I am happy to hear that you have found your "magic pill". I too found the med that helped me and am still amazed to see how wonderful it is to be able to do do certain things ( especially gardening!!! ) 🙃 I wish you a consistent improvement and thank you for sharing your good news!!!!!

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