Orthostatic intolerance

[Dr Carrot]

I've had this issue before ME and didn't have autonomic problems back then. It was worse when I didn't exercise or move around too much. My legs used to turn deep purple after a shower.

Did you have this before ME?

Nope, never. I was very “healthy” while healthy, if that makes sense, so maybe my circulation was good too.

 

[Patient4Life]

I am afraid I don't buy this.

I do. It's what happened to me. I knew I could not stand and work at the grill anymore when I was 17 so I got an office job. I never said anything to my doctor. 15 years later another doctor put me through a tilt table test and I fainted. He said nothing to me about OI or its connection to CFS (I have since read a study or two that CFS patients could be put through a tilt table to reveal their symptoms), just to eat salt. It was only a few years ago reading the SEID criteria with patients having OI that I finally understood that I had been suffering from it for 35 years but didn't know it.

I had PEM all this time too but, since it was never explained to me I did not know I had it until the SEID criteria.

I was mild for 15 years or so and then started getting worse and 25 years after first becoming ill with ME/CFS I finally became disabled. But, still it wasn't until 37 years after becoming ill did I know I had OI and PEM, again due to the SEID criteria.

When one has a mild case of ME/CFS, you don't understand what you are experiencing and you find a new normal. I was always compromised but did not understand that I was sick.

 

[Mij]

Nope, never. I was very “healthy” while healthy, if that makes sense, so maybe my circulation was good too.

Ah ok. I was very healthy too, a long distance runner, hiker, played tennis etc but when I took a break for a few days I had this red/purple mottling in my legs in the shower and on hot days.

 

[Binkie4]

@Sasha
I can verify that waist high compression tights are wearable but with difficulty. I have damaged both thumbs, confirmed by X-ray, in getting them on. Also my lower back.

I need to wear them for lymphedema so it is worth the struggle. If it helps my OI too, and I think it does, then that is good.

Eta: quote omitted

 

[Hoopoe]

When one has a mild case of ME/CFS, you don't understand what you are experiencing and you find a new normal. I was always compromised but did not understand that I was sick.

This is a big reason I'm so angry about Wessely et al. They have tried to convince patients and society that there isn't really anything wrong with us. It is the exact opposite of what is needed and what is helpful. By the time patients are so sick that they can no longer deny that there is a problem, a lot of suffering and harm has already occurred, some of it irreversible. Much of that is probably preventable.

 

[Jonathan Edwards]

When one has a mild case of ME/CFS, you don't understand what you are experiencing and you find a new normal.

But we still don't understand what people are experiencing.

If you knew you could not stand and work at the grill you knew you were not tolerating standing well - so apart from the greek words you knew you had OI.

OI as such has nothing to do with salt. It is just a symptom. In some people with ME it might be caused by a problem relating to salt and water but that is not proven by any means. Normally when salt and water are depleted people have a tachycardia all the time, not just on standing, so it does not seem to fit.

 

[Patient4Life]

If you knew you could not stand and work at the grill you knew you were not tolerating standing well - so apart from the greek words you knew you had OI.

No, I didn't. I got my sitdown job and found my new normal. I had no idea it was due to being unwell or connected to my having mono and since it was 1979 there was no CFS. I never said anything to my doctor about it and went on with life working, socializing, and so on never understanding I had OI. I did not understand I was sick because I was mild and just found my new normal.

 

[Jonathan Edwards]

No, I didn't. I got my sitdown job and found my new normal. I had no idea it was due to being unwell or connected to my having mono and since it was 1979 there was no CFS.

But 'orthostatic intolerance' just means you could not stand. It doesn't mean anything more than that. It does not mean there is any connection to ME or mono or anything. It is just like headache or backache or felling sick or dizzy. It means nothing more than what you felt like. It isn't a process. I have orthostatic intolerance now I am in my late sixties and have bad knees and sciatica. My orthostatic intolerance consists mostly of my legs feeling terrible. For some people it is feeling sick. For others it may be feeling faint. It is a completely vague general term for having difficulty staying standing. Nothing more.

It is interesting to see the results of Trish's poll. Different people have different sorts of OI - maybe for completely different reasons.

 

[Patient4Life]

But 'orthostatic intolerance' just means you could not stand.

Look, what I believe you are stating is that patients should know they have OI but, when you are mild with ME/CFS you don't know you have OI and can't even put it into words and you end up finding a new normal. You can have OI without ME/CFS, but I didn't have it until I did have ME/CFS. Even though I knew I could not stand anymore, it wasn't something I put into words to ANYONE and again, I found a new normal. My OI was so mild that I could go to amusement parks and stand in line for a long, long time. But, I could not work at a grill and stand. So, how could I even understand that I had OI unless someone explained to me there was a connection to my having ME/CFS? Patients that are mild are not understanding they even have a symptom and don't report it.

 

[Hoopoe]

It is interesting to see the results of Trish's poll. Different people have different sorts of OI - maybe for completely different reasons.

Also interesting that so far everyone else agrees with Dr Bateman that patients may not recognize their own orthostatic intolerance.

 

[Wonko]

I spent several years physically holding myself up, using anything I could find, mainly worktops, counters etc. as standing was a problem. If I was standing near to a fence I'd wrap my arms through it to help hold myself up, that sort of thing. I was slightly puzzled as to why other people didn't seem to need to do it. I've given up placements because I couldn't hack the standing up.

I also used to get seriously burning feet, the bits in contact with the ground only, which seems it may have been that small fibre neuropathy thingie. I avoid this happening, mostly, by not standing as much.

The only way I can, sometimes, stand waiting for an overdue bus is to lock all my leg muscles, which causes problems if it's done for too long, in that unlocking them can be problematic, think 2 dead legs and escalate it a bit. Normally this will also make me feel quite ill and aggravate any cognitive issues I am having that day. Mostly I can't do this so end up having to walk no matter how inadvisable I think it is, as standing is not an option.

It's just life, whenever I've mentioned anything along those lines to my GP I either get the blank stare or told it's probably a panic attack. Panic attack seems to be her default setting.

 

[Jonathan Edwards]

So, how could I even understand that I had OI unless someone explained to me there was a connection to my having ME/CFS?

I am not talking about understanding there is a connection to ME. I am simply saying and have been saying throughout that we know if we find it hard to stand. Most people do not know what that is called in French or in medical jargon but that is not the point.

OI in people with ME may have nothing to do with ME in particular. I was wondering just now what answers you would get if you asked people with MS or diabetes or lupus or chronic leukaemia if they had OI. I rather suspect the answer might be 70%. That does not mean that there isn't some special aspect of ME that produces OI for a very specific reason but I am not sure we know that.

What I think you are saying is that you never knew it was ME that was making it hard for your to stand. That is not what I was doubting.

 

[Hoopoe]

I wonder if we could learn about the real predisposing factors by studying people with vague symptoms that are typically ignored or dismissed as not an illness. Some of these people then go on to develop ME/CFS or other serious illnesses. Maybe medicine has such problems understanding chronic illness because it also follows the rule that symptoms should be ignored until they're already a fairly big problem. The answer to where the illness really begins could be found exactly in the people that still have only mild vague complaints that they might not even see as problem.

 

[NelliePledge]

From my experience over the years I've learnt to never discuss these terms with my GP. It will not make you appear more believable or have them take you seriously. I would discuss symptoms only, say something like your chest feels heavy, or you have weakness in your arms, or you feel very shaky upon standing etc.

And never tell them you have "neuroinflammation"!!! it's not a medical term, and they will assume you read this off the internet.

Good point I will make sure I use plain English description if I decide to mention it.

 

[Wonko]

They can't do that, for the fairly obvious reason that people would twig that they don't actually know what they are doing, the medicine is at least as much an art, guesswork, as it is anything to do with science. This would undermine the placebo effect that most doctors seem to rely on to do their job for them. People get better, because a doctor has given them something and told them it will make them better.

 

[rvallee]

Also interesting that so far everyone else agrees with Dr Bateman that patients may not recognize their own orthostatic intolerance.

I distinctly remember the first few times I noticed it, standing at a street corner and getting a weird woozy feeling. It was years before I developed more noticeable symptoms. It was also mild and hard to explain so I never bothered to check but in hindsight it's pretty clear and the memory is as clear as the few times I lost consciousness.

Not that it would have changed much, there is still no expertise in either OI or dysautonomia in Canada and when I asked my GP she had never heard of it.

 

[DokaGirl]

Regarding the volume or loudness of symptom noise: ME with its multi-systems involved, and multi-symptoms can be very confusing to communicate to health professionals. The symptoms can in effect be "shouting" at the patient, they are so disabling, and plentiful. It can be very difficult for patients to sort out, and name or describe all these symptoms.

On the other side, receiving these messages from pwME must be confusing, and disconcerting, especially considering the lack of medical training in this area. I think I've seen somewhere that the more symptoms someone has the less physical the condition is considered - or is that just mainly put out by the CBT/GET brigade?

However, judging by comments such as "everyone feels this way", I would say some other health care providers think this way too.


@Jonathan Edwards

Thank you for your comments.

By "biomedical label" re OI, I meant there was no acknowledgement that the increased heart beats and faintness/lightheadedness with upright positions was physiological. It, along with everything else was seen as burn out, stress, over sensitivity to everyday aches and pains. I agree, it is a symptom.


I don't know, but would impedance cardiograph testing with pwME, as Dr. Arnold Peckerman wrote about be of help?

Abstract:
https://www.ncbi.nlm.nih.gov/pubmed/12920435


Am J Med Sci. 2003 Aug;326(2):55-60.
Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome.
Peckerman A1, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH.
Author information

Abstract
BACKGROUND:

Findings indicative of a problem with circulation have been reported in patients with chronic fatigue syndrome (CFS). We examined this possibility by measuring the patient's cardiac output and assessing its relation to presenting symptoms.

METHODS:
Impedance cardiography and symptom data were collected from 38 patients with CFS grouped into cases with severe (n = 18) and less severe (n = 20) illness and compared with those from 27 matched, sedentary control subjects.

RESULTS:
The patients with severe CFS had significantly lower stroke volume and cardiac output than the controls and less ill patients. Postexertional fatigue and flu-like symptoms of infection differentiated the patients with severe CFS from those with less severe CFS (88.5% concordance) and were predictive (R2 = 0.46, P < 0.0002) of lower cardiac output. In contrast, neuropsychiatric symptoms showed no specific association with cardiac output.

CONCLUSIONS:
These results provide a preliminary indication of reduced circulation in patients with severe CFS. Further research is needed to confirm this finding and to define its clinical implications and pathogenetic mechanisms.



Full Paper:
http://www.viruscausesfatigue.com/images/ReducedCardiacOutputandCFS.pdf


This paper is cited in the CCC Overview, page 20, reference #37: https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

The Overview was written by lead author of the CCC, Dr. Bruce M. Carruthers, and Marjorie I. van de Sande.

Under "Natural Course', page 1 of the Overview indicates: " Objective postural cardiac output abnormalities correlate with symptom severity and reactive exhaustion."

Someone else may know for sure, but I believe, Dr. Peckerman passed away a few years ago.

 

[voner]

What I have not heard about in relation to the blood distribution issue are studies of central venous pressure CVP with posture. Does anyone know if these have been done? CVP is much more directly relevant than blood volume and would give more causal information than BP or heart rate because what matters haemodynamically with posture is the way gravity alters CVP. Everything else is secondary to that.

here is one. small study in 1998. One of the authors is David Robertson of Vanderbilt, who is still very involved with POTS research.

https://www.ncbi.nlm.nih.gov/pubmed/9815870

 

[AliceLily]

For me, looking back, the OI started 2 days before my cold-like flu ME onset. It was so bad, like nothing I had experienced before in my life. I had to leave a class where I was studying part time and see the closest doctor in town (not my own doctor). It was a bizarre consultation considering how sick I was with the OI, he was more interested in giving me an all over skin check.

 

[Jonathan Edwards]

@Wonko , I agree that medicine is a lot of guesswork and blather, but I hate to call that an art. When I did my degree in art history fifty years ago I learnt that art is much more precise than medicine. Raphael and Titian did not use any guesswork, they knew exactly what needed doing!