Low Blood Volume

[Ian123]

Dr David Streeten discovered while treating patients for orthostatic intolerance that one had a low plasma volume and another had a low circulating blood volume both of these patients turned out as having an

ME/CFS diagnosis, when contacted by Dr David Bell who had ME/CFS patients with the same symptoms further research was carried out with results published 1997-1998 ncf-net.org/library/Bell-St...

Epogen is a human Erythropoietin, glycoprotein that controls red blood cell production in bone marrow.

Used as a treatment in orthostatic hypertension a condition in which blood pressure drops upon standing,

causing dizziness, light headedness or fainting.

Neurocirculatory asthenia is a long winded term for the rather straightforward findings following Dr. Bell and Dr. Streeten's research. In plain English, it describes a person's inability—arising from the brain—to maintain adequate, normal blood flow to all areas of the body.

The test of any theory is does it adequately describe the symptoms we know of while predicting areas for research previously not suspected, it also as Bell has said ends one theory "Nobody can say that a half-normal blood volume is psychosomatic,"

POTS (Postural tachycardia syndrome) an autonomic nervous system dysfunction with similar symptoms that ME/CFS experience bmjopen.bmj.com/content/4/6...

Understanding poor circulation, blood pooling, heart arrhythmia, headaches, poor digestion caused by the autonomic nervous system management of vascular constriction and dilation provides some insight for treatment that eases some of the symptoms.

Lower blood volume - basically dehydrated

Drink more water, check your mouth and lips to see if they are dry, If they are, drink

Eat more salt. Unless you have high blood pressure or heart failure, you need more salt than most people. Enjoy salty foods as well.

Fewer red blood cells (red blood cell mass) to carry oxygen and nutrients

A blood test for ferritin levels (iron levels are associated with fatigue -anaemia)

Low thyroid levels affect red blood cell production

[MrsSowester]

How interesting, I really crave salt on my bad days, I've been reporting it to doctors for years.

Did you see the research linking high dietary salt intake to autoimmune disorders like MS though?

Sorry I'm trying to post the link but it wont work for some reason - there's an article in the Guardian 'Salt: no great shakes for yourself' that links to the paper.

[BagEnd in reply to MrsSowester]

Link theguardian.com/lifeandstyl... thank you for bringing this into the community.

[Ian123 in reply to MrsSowester]

In small amounts, sodium is essential for normal nerve and muscle functioning. It is also required for the proper balance of fluids in your body

the RDA (recommended daily allowance) in the UK is around one teaspoon for adults without high blood pressure or heart failure.

With a reduced blood volume the salts purpose is retaining some of the fluids taken on, as a saline drip on iv does with severe blood loss.

This retention of some fluid avoids washing away salt intake with a higher level of thirst/water intake the body experiences with low blood volume.

I am not medically qualified so discussing this with your own doctors that have your case history is as usual the advised course of action.

[Stormchaser]

My mouths always dry and my lips crack drink like a fish all the time always bathroom if forgotten where I was going. Drink more and I have no time not drinking or peeing must be something else from doctors.

[Ian123 in reply to Stormchaser]

Ideas for retaining some of that fluid intake came from the European ME groups on what helped some of the members, although mention of a hormone release that affected bladder function was another talking point involved in a complex diagnosis.

Amount of blood available at the bowel also affects nutrients passed into the blood supply any surprise we run out of aerobic performance so fast in tests, taking this into account.

[Stormchaser in reply to Ian123]

Blood pressure always low of norm this has the doc scratchin his head I am carrying a couple of pounds with low active level I aught too be be higher. Has got me asking questions when I thought most of this was holding me as good as could be.

[Ian123 in reply to Stormchaser]

Hoping there are better management strategies possible in your future Stormchaser.

[Stiller]

Be on with some blood pressure testing as me doctor is worried on how low readings are going. Can feel a wee chat coming on see whats the thinking from here on.

[Ian123 in reply to Stiller]

Like the thinking Stiller work out how you can be helped. Keep us updated if you can with sharing anything that helps.

good luck with the chat

[slowmotion]

First time I have ever heard Pots much of how I feel especially at a time us ladies will understand. Thanks for sharing I am searching more info now dizzy standing up is me.

[Ian123 in reply to slowmotion]

Some help from potsuk.org/ doing a quick search

[slowmotion in reply to Ian123]

Thanks that is me I have joined on facebook.

[MrsSowester]

Me too, one of my most annoying symptoms. If I push through the dizziness my fingertips go purple and I have to lie down.

[Ian123 in reply to MrsSowester]

Blood pools in the abdomen and legs due to gravity if something interrupts the normal mechanisms that help return normal blood flow (autonomic nervous system vascular constriction)

My knees are the point where I feel this most as a feeling that a blood pressure cuff was around them been inflated, with raising my legs a source of relief.

Personally follow the do not stand when you can sit and do not sit when you can lay down motto as closely as I can.

[budgiefriend in reply to Ian123]

my legs and feet are where I have the most pain. I am mostly bed bound. I keep moving my feet pretty frequently, but sometimes my legs and feet are immovable for hours at a time. When I can move them again, I try to change position, but it is so painful.

[Ian123 in reply to budgiefriend]

Using heat packs for some relief from stiffness as blood is drawn towards the surface by the heat. Poor circulation is a common theme among the people I have met, a reduction in blood volume where the vital organs get first call on available blood leaves cold hands and feet. If the blood is feeding the major muscles the it cannot be at the bowel during digestion that should be passing nutrients into the blood. Setting separate time for the fight or flight muscle movement as opposed with rest and digest relaxation, as best use of limited resources.

[budgiefriend]

Is there a test and treatment for that condition/cause that can be provided if a doctor in the NHS were to become convinced?

[Ian123 in reply to budgiefriend]

The tests for venous insufficiency can include contrast dye that shows blood flow on x-ray or ultrasound (arteries carry blood out from the heart while the venous blood is the return section of the loop)

Treatment will depend on test results if thrombosis (blood clotting) varicose veins or phlebitis (vein swelling)

Keeping feet raised when possible, using compression stockings (flight socks) avoid standing or sitting without moving as much as possible, are self help treatments should no interest be forthcoming in orthostatic intolerance or blood pooling.

[budgiefriend in reply to Ian123]

thank you. I will attempt to get something happening as soon as I find a doctor who will treat me

[budgiefriend]

Did you actually get a diagnosis of POTS? I am reluctant to suggest that I have a particular thing to doctors, as they tend to react in a negative way and brush me off.

[Ian123 in reply to budgiefriend]

I meet the change in heart rate criteria and have a measured time for syncope from a tilt table test, very interesting for researchers but for me how do you live with where you find yourself each day. The information that I draw upon managing symptoms is based on some small understanding of the forces involved along with possible effects.

Only worry about the things you can control, little will meet this criteria quite often and the stress of frustration works against yourself.

Brushed off find another way of achieving what you want that is not carrying negatives, loose some battles but win the war.

[budgiefriend]

Yes, good to only think about the things we have some control over. I seem to be moving in the right direction as my new care company is going to find me an advocate and help with getting an interested and responsive doctor as well as possible second assessment from another OT. The one I saw seemed biased and clueless about this illness.

[Ian123 in reply to budgiefriend]

Younger doctors are most often the most open for new ideas in my experience. The older more established stay with the teachings of 20 - 30 years ago that ME was a mental health issue that could be removed with happy pills. Waiting for more enlightened / educated about this illness care provision will take time, although as a community progress has been greater in the last 5 years than the previous 30 years.

As an illness I believe we are moving in the right direction.