Is there such a thing as mild orthostatic intolerance?

[TrixieStix]

Um!

There seem to be a lot of people in the Relapsing Polychondritis forum that also have POTS, OI, or OI/POTS-like symptoms. This makes me wonder if this these types of symptoms are something that tend to be seen in any disease group where severe fatigue is involved?

I imagine de-conditioning and the physiologic changes one experiences from de-conditioning does plays some role in it.

 

[lansbergen]

I never took much notice of the talking about it. For me it is just part of the disease proces. When animals are ill they lay down more than usely.

Nowadays I can be up all day if I rest for a while when my muscles are becoming to tired.

During flares (mild now) many times I need to hang against something to keep standing on my feet when I am not near a couch to lay down.

 

[Helen]

Dr. Teitelbaum, who has declared that he suffers (or suffered) from CFS has just posted on his blogg about Ortostatic Intolerance in Fibromyalgia.

I think the article was quite good and with general facts and information about OI. He doesn´t mention ME/CFS in his blog as far as I can see, but still I think it´s worth reading.

 

[Sasha]

The good news? OI, POTS and NMH are VERY treatable!

Mine doesn't seem to be. I wonder what the stats actually are.

 

[Sasha]

The article is about fibromyalgia but I wonder if any of this applies to ME/CFS (AFAIK, small-fibre neuropathy isn't a feature of ME/CFS):

Excellent research by Dr. Mark Sivieri in Maryland shows that many people with fibromyalgia are showing IgG1 and IgG 3 antibody deficiencies (deficiencies in our body's defense function) on blood testing. This contributes to immune dysfunction. But research and clinical experience are additionally showing that these immune deficiencies are also associated with Small Fiber Neuropathy, which is common in fibromyalgia. This is one of many factors contributing to pain, and also seems to cause a "shrinking" of the nerves involved in autonomic function.

Studies show that treating with IV gamma globulin can actually result in regrowth and recovery of these nerves, helping both the small fiber neuropathy pain and autonomic dysfunction.

So we are now finding a missing link between immune dysfunction, autonomic dysfunction, and small fiber neuropathic pain.

We have found that IV gamma globulin is very beneficial in a small subset of the most critically ill people who have fibromyalgia and OI. These are people who are often housebound and bedbound. It's important to start with a low dose of gamma globulin and work up to the half gram per kilogram IV each three weeks. Otherwise significant Herxheimer (infection die off) reactions may occur. Treatment benefits, often dramatic, usually begin at about four months on the optimal dose.

 

[duncan]

Infection with what, @Sasha ? Did Teitelbaum specify which pathogen he suspects/suspected?

If memory serves me. he used to promote an acronym protocol when he worked out of NYC, but now he is out of Hawaii?

I always thought he was a little, um, optimistic.

 

[Scarecrow]

If memory serves me. he used to promote an acronym protocol when he worked out of NYC, but now he is out of Hawaii?

 

[duncan]

That's it, @Scarecrow !

 

[Sasha]

Infection with what, @Sasha ? Did Teitelbaum specify which pathogen he suspects/suspected?

I was surprised to see that, too - I don't know what infection he's referring to.

I always thought he was a little, um, optimistic.

He has that reputation, I think. I wish doctors wouldn't oversell how treatable things are when that's not actually based on anything. I've seen the opposite view - that OI isn't very treatable - from quite a few specialists online, IIRC.

 

[Helen]

Mine doesn't seem to be. I wonder what the stats actually are.

I think it´s a different situation with active ME, which he doesn´t seem to write about.

The article is about fibromyalgia but I wonder if any of this applies to ME/CFS (AFAIK, small-fibre neuropathy isn't a feature of ME/CFS):

Many of PWME have it too. I´have it ( but so far no immunodeficiences), and there are also some threads discussing it on the other forum. I have read about GG therapy before in this context.

Infection with what, @Sasha ? Does Teitelbaum specify which pathogen he suspects/suspected?

The formulation by Teitelbaum that there might be Herxheimer reactions should indicate that there is a Lyme infection as well, or?
I´m diagnosed and treated for a Lyme infection before, and think this mix of claims without further explanations is quite bad.

I probably sounded to enthusiastic about the article. Actually it was mainly the Orthostatic Grading Scale that I thought might be useful in describing symptoms to doctors. I also think we should keep in mind that the article isn´t about OI and ME. And, yes, the author is unspecific and maybe unrealistic, still he probably has a huge experience of CFS patients so there might be useful hints in what he suggests.

 

[duncan]

@Helen , I also thought immediately about Lyme, but I think herxing is not exclusive to Lyme, although perhaps it is to spirochetal infections.

 

[Helen]

but I think herxing is not exclusive to Lyme, although perhaps it is to spirochetal infections.

I think you are right, but also that Lyme is the overall most common infection to cause "Herxing".

To not take the thread too much off topic, I should add that all symptoms of both ME and Lyme, including symptoms from low blood volyme and OI, were gone for four months after I had had 12 weeks of IV antibiotics.
A month ago when I had three gammaglobulin injections in 8 days, I also had some hours when I was almost back to normal. Intriguing, and I also learnt that my symptoms, so far, are reversibel.

 

[alicec]

However, I am wondering if being upright, either standing or sitting is for me more exhausting than you would expect from the physical exertion.

There are delayed forms of OI, such as neurally mediated hypotension.

I have neurally mediated hypotension and often experience a plummeting BP within 1-2 h of getting out of bed in the morning. It's as though my body works hard at adjusting to the upright position after a night in the horizontal position, does ok for a while, then gives up the ghost.

Eventually my BP does stabilise and I have no more incidents of hypotension that day.

As well as that I experience the things that @Peter Trewhitt describes and to me it feels like a different phenomenon. In general I just do better lying down. Certainly I can concentrate better (if I need to read anything a bit complicated I always do it lying down) and I bought a chaise longue for my sitting room so I can socialise, watch TV etc in a semi-recumbent position.

I'm by no means bedridden and am able to do household tasks, go shopping and to a few outings with friends etc, but I can't stay upright for long periods of time. Even sitting is far preferable to standing.

Lying flat makes me feel the best but the chaise is pretty good too. I've started eating most of my meals there as well and rarely sit in a chair at home anymore.

I don't think this second phenomenon has much to do with BP but I have imagined that it might have something to do with blood flow to the brain. But maybe not.

 

[Forbin]

What you describe sounds more like something I have acquired only since I have passed the age of sixty five when viewing in art galleries. I cannot keep the same upright position for more than a few minutes. I have to sit down, or start walking about - in which case I am fine. I suspect it has something to do with neural signals from veins in the lower limbs. I very much doubt blood pressure actually falls. I suspect it is just that the brain cannot tolerate the input - rather as it cannot tolerate the input from an inflamed trachea without coughing during a concert, or just holding one's breath. My guess is that it is another aspect of signal intolerance. That could be tested in an exercise medicine lab.

Now that you mention it, I think the comparison to "holding one's breath" is really interesting. It's one of the few circumstances I can think of where the body sends desperate signals for you to take a voluntary action. That's what standing with the illness feels like - like getting unmistakable signals that your body is telling you, "SIT DOWN... OR I WILL PUT YOU DOWN!"

I have experimented with standing still in spite of these warnings and the urge to sit down becomes almost unbearable. Still, it has never led to me blacking out, as you might expect if it were truly low blood pressure. The heart rate does goes up, but perhaps only because the body is signalling an emergency situation.

Rather than low blood pressure or signals from veins in the lower limbs, could it be related to the mitochondria signalling that they are exhausted, almost as if we are, in a sense, suffocating on a cellular level?

 

[ahimsa]

I haven't read all the other replies yet but wanted to answer this while I was thinking about it.

I have experimented with standing still in spite of these warnings and the urge to sit down becomes almost unbearable. Still, it has never led to me blacking out, as you might expect if it were truly low blood pressure. The heart rate does goes up, but perhaps only because the body is signalling an emergency situation

That sounds very familiar. I remember when I first got sick and the doctors were asking me about why I needed to sit down. And I tried to explain to them that feeling of "I HAVE TO SIT DOWN NOW."

This feeling is different from weakness or fatigue but I didn't have the right words for it. After I had the tilt table test I realized that A LOT of my symptoms - nausea, dizziness, lightheadedness - were pre-syncope (pre-fainting) symptoms. And several other symptoms - muscle twitches (fasciculations), muscle pain, feeling short of breath, increased heart rate (but not enough for POTS diagnosis when I first got ill) - were reproduced during the tilt table test. So I think they must also be related in some way (maybe indirectly?).

These symptoms came one by one the longer I had to stand on the tilt table test. But until I did this test I had no idea that any of these symptoms could be related to dropping blood pressure.

@Forbin, have you ever had a tilt table test? I ask because I have never fainted in day to day activities but I passed out during both my tilt table tests. On the first test I was fidgeting, moving my feet around without realizing it, which I guess was keeping my blood pressure from dropping. The person running the test had to ask me to stop moving. Within a few seconds I passed out.

Apparently there are many ME/CFS patients who do have this blood pressure drop but never faint in normal life. From the Johns Hopkins patient handout on Orthostatic Intolerance:

While fainting has been considered a classic symptom of NMH, we have found that many people who develop NMH during tilt table testing do not faint in day-to-day life.

Back to the original question by @Peter Trewhitt

Does any of the published literature on orthostatic intolerance or POTs look at it as a continuum rather than an all or nothing phenomenon? Is there such a thing as mild orthostatic intolerance?

I'm pretty sure that most doctors see POTS, and other types of Orthostatic Intolerance, as having a range from mild to severe. I posted a link to a short POTS overview video by Dysautonomia International (see https://www.s4me.info/index.php?threads/what-is-pots-video-by-dysautonomia-international.1070/ ) and it specifically mentions a range of severity (at about 2:10 in the video).

Hope this is helpful.

EDIT: I should mention why I've had two tilt table tests.

I had my first tilt table test in 1995 when trying to get a diagnosis and treatment (I first got sick in 1990 at age 29).

The second test was done for the long term disability insurance in 2003. Same results, just a slightly different length of time (20 minutes on the 1995 test, about 30 minutes on the 2003 test) before a huge plummet in my BP and I passed out.

 

[Forbin]

@Forbin[/USER], have you ever had a tilt table test? I ask because I have never fainted in day to day activities but I passed out during both my tilt table tests. On the first test I was fidgeting, moving my feet around without realizing it, which I guess was keeping my blood pressure from dropping. The person running the test had to ask me to stop moving. Within a few seconds I passed out.

Yeah, I was thinking about how so many people with ME/CFS have reported fainting during a tilt table test. On the other hand I don't know how many people with ME/CFS actually faint just from standing for a long period. There may be some mechanism that is be able to hold off fainting while standing, yet which cannot overcome a tilt table test.

I've never had a tilt table test, but, as a teenager, I did faint once in what was no doubt a vasovagal response to receiving an antibiotic shot. I fainted about two minutes after the shot, while standing still. That, however, was an instantaneous loss of vision (I just had time to say "I can't see") followed by a brief loss of consciousness. There was no time to even get the sense that I should sit down.

I wonder if the problem with standing might be related to low blood volume instead of low blood pressure. With low blood volume there might be mechanisms to increase blood pressure while standing. Dr. Bell has told the story of a man who came to him with ME symptoms who had really high blood pressure. He wondered how the guy was even able to stand up with pressure that high. It turned out that the man had low blood volume. Dr. Bell said he was very nervous about giving this person IV saline because that would be the opposite of what you'd want to do for high blood pressure. The patient immediately felt better. I don't recall what happened to the patient's blood pressure, but this was done in Dr. Bell's office, so the patient would have been constantly monitored. The problem with the treatment was that the IV fluids, or even blood transfusions, only led to improvement for a few days and could not be endlessly repeated. Dr. Bell believes that, in some ME/CFS patients, something is causing all the blood vessels of the body to constrict by a small amount. The combined effect is thought to be enough to reduce the overall blood volume.