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I am POTS but what’s ME?

This CFS/ME blogger and advocate at TipsforME.wordpress.com is writing about 2 colliding conditions which are rarely explored: the intersection between ME and POTS. Her questions and discoveries are so engaging and intelligent. I am excited that someone is finally writing about this, and I hope more awareness will come to light on 2 very similar conditions which need attention!

I am POTS but what’s ME?

I’m sitting at the computer typing this wearing sports compression leggings and a sports’ heart rate monitor, when the most strenuous activity of my day is likely to be a sitting shower (at which point the sports equipment will come off!).

Topics touched on in this post: POTS vs ME symptoms; heart rate monitoring and exercise; exercise for POTS; post-exertional malaise; adrenal fatigue and POTS; diet and nutrition.

Background: I’ve had ME 17 years but I’ve recently acquired an additional PoTS diagnosis effectively backdated 17 years. I’m trying to get to the bottom of which is which in terms of symptoms and management.

This is a post which is more about asking for tips from you than offering tips (although you may be able to infer some tips from what I’m already doing). Please comment on the end of this post, rather than Twitter or Facebook, and then other readers can see your tips too.

I’m feeling a little stuck and confused. My confusion stems partly from the blurred boundaries between POTS and ME/SEID (see Am I PoTS or is it Just MEfor background on this). Since writing that post I have had a formal Tilt Table Test diagnosis of POTS, but confusingly the SEID renaming process now includes a Tilt Table Test as part of the diagnosis (not as part of a diagnosis of exclusion, so notsaying that you have POTS instead of SEID/ME because your heart rate increased when tilted). This leaves me a little confused both in terms of illness identity and practical advice. Is PoTS just part of ME for a subgroup and therefore ME strategies apply?

Symptoms

Currently my symptoms are more obviously POTS than ME (if it is possible to separate out the two). My most stressful symptom is concrete legs which I seem to be getting more frequently again, despite being on beta blockers. This means that I can’t leave the house by myself and sometimes I get stuck within the house (halfway up the stairs is the worst). I even get this from sitting upright. My understanding is that this is caused byblood pooling in my lower legs meaning there isn’t enough blood flow to my thighs, I can still move my calves and can sometimes do a little shuffle. It definitely helps to know what causes this. Previously I was told it was ME fatigue related which didn’t really fit and led to unnecessary extra bed rest (more on that in a future post on symptom based pacing).

Standing up I’m getting the belt-tightening-around-my-chest sensation, which might be more worrying if I hadn’t recently had lots of cardio tests. I’m also getting more dizziness standing again, although strictly speaking this is maybe low blood pressure rather than tachycardia related. By the way, when is low blood pressure dangerous? The other day my home monitor gave readings around 84 over 49, with related symptoms. I spent the day in bed, drank loads and ate salty things.What would you do in this scenario?

I had stopped wearing my heart rate monitor because my readings had become boringly low with the beta blockers, and it is a little uncomfortable to wear, but I wore it again yesterday to check. Although I’m not getting the previous bizarrely high readings I do frequently go over 100bpm standing while on Bisoprolol to slow my heart rate(technically still POTS because resting is more than 30bpm lower).

The two conditions have such similar symptoms that if it wasn’t for my sometimes odd viral symptoms I would think that CFS/ME was a misdiagnosis (afterall I was diagnosed with a diagnosis of exclusion method and they didn’t test for POTS at the time).  I don’t really think it’s a misdiagnosis but part of me suspects that my non-POTS-ME may be relatively mild underneath all this POTS stuff and therefore I’m wondering if I should concentrate on POTS based advice.

Exercise and Heart Rate

Exercise is the main point of confusion. Although POTS is another condition where exercise makes you feel pants, it does seem to also be an important way to get better if done right. The crucial factors seems to be to start off lying down and strengthen calf muscles. I have got to the point that I can do this recumbent ME-specific yoga most days if I don’t have a shower:

Read More… http://wp.me/p4uiV8-fb

Chronic Fatigue Syndrome gets a Make-Over

Article dated February, 2015

Last week, the Institute of Medicine re-named Chronic Fatigue Syndrome, also known as ME, now renamed SEID (Systemic Exertion Intolerance Disease). CFS is the name most commonly used in the United States while Myalgic Encephalomyelitis (ME) is the more common name used internationally. As of last week, there is a third name to distinguish this already mysterious condition: SEID.

For many, Chronic Fatigue Syndrome onsets after a virus. Imagine being a perfectly healthy adult, child or teen and after a bout with a feverish flu, you find yourself feeling worse and worse. The appropriate time for the virus lapses, but as much as you fight to get well, your body and mind feel as though they are in shut down mode. No amount of rest or sleep is enough anymore. Just chewing your food makes you feel as though you need a nap. Your thoughts become so blurry and confused- you begin to fear Alzheimer’s or dementia. Migraines, loss of appetite, body pain, hypersensitivity to smells, sounds, lights- these symptoms are the tip of the CFS/ME/SEID iceberg. Imagine feeling like you are moving through quick sand- and there is no end to the breakdown. You are sure it will pass in time, but as time passes, you only become more weak, frail, and may even struggle to stand and walk. Doctors help you by telling you to “get more rest” and send you home. This is what many with Chronic Fatigue Syndrome experience.

The name, Chronic Fatigue Syndrome has been a problem since its origin. Can you imagine suddenly finding yourself confined to a bed, unable to raise your arms from sheer fatigue only to be told by other medical professionals and family members: “Sure, aren’t we all ‘chronically fatigued?” That has been the overwhelming problem with the original name. Doctors without enough education of the disorder have been brushing their patients off, leaving them incapacitated and searching for answers on their own limited energy supply. It’s estimated that as many as 91% of those with CFS/ME have yet to be diagnosed because physicians are still unsure whether or not it is psychological or “all in their [patient’s] heads”.

Over one year ago, the Institute of Medicine began running studies and tests to narrow down specific symptoms and markers in individuals who develop Chronic Fatigue Syndrome/ME. An independent panel of 15 physicians then met to narrow down a few diagnostic criteria and to decide on a new name for CFS/ME. They believe that each word in “Systemic Exertion Intolerance Disease” is more specific and clear as to how the condition affects the body.

Systemic Exertion- indicating the extreme fatigue or malaise all over the entire body.

Intolerance- implies impairment from any sort of activity. ‘Orthostatic Intolerance’ is an example of a common type of intolerance found in those with CFS (cited in the IOM study).

Like other conditions, those with CFS/SEID experience a long list of symptoms which are not all included in the short diagnostic list; keeping the diagnostic criteria short is meant to help doctors understand and treat patients with this disorder better. Here is the list of symptoms the Institute of Medicine’s special panel narrowed down after one year of testing those with Chronic Fatigue Syndrome:

-Profound fatigue lasting at least six months

-Complete exhaustion even after minor physical or cognitive exertion

-“Unrefreshing” sleep

-Cognitive impairment or “brain fog”

-Worsening of symptoms upon standing or Orthostatic Intolerance

There is a feeling in the CFS/ME community that the re-naming is confusing and sets struggling patients back further. Many in the CFS/ME community are disappointed that the new name is not “Myalgic Encephalomyelitis” to make the name cohesive, finally. Even though Chronic Fatigue Syndrome was the official name in the United States, the international name, “ME” has been largely adopted by CFS sufferers here in the US. However, the IOM argue that there is not significant research showing that patients with SEID have brain inflammation or muscle pain as the core symptoms (the meaning of ME). Some CFS specialists and patients with CFS/ME feel the updated name and new marker symptoms overlook critical issues of the disease like chronic pain, headaches, sensitivities, cardiac disturbances, and gastro-intestinal disruption. This isn’t the first time this disorder has had a make-over, however. Epidemic Neuromyasthenia, Myalgia Nervosa, Epstein Barre, and Royal Free Disease are a few of the names that have been given to those with CFS, now called Systemic Exertion Intolerance Disease. Researchers say in the next 5 years, it may be re-named again, as new research will likely continue to emerge.

Even though there is still uncertainty regarding the new name, many believe there is reason to be positive. The 235-page report released by the IOM is expected to lead to more research for the disease, better funding, and more appropriate treatments for Systemic Exertion Intolerance Disease. Those who at one point may have called up to 2.5 million Americans “complainers” or “lazy” will have more information and education to help the ignorant understand this debilitating condition. Doctors who may have once brushed off their patients’ symptoms because there were unclear guidelines, now have clarity on which criteria specify SEID. And lastly, it is now called a “disease” which shows there is progress in understanding how it affects the brain and body. For such a complex condition that is so debilitating, more understanding and more awareness is paramount!

http://www.npr.org/blogs/health/2015/02/11/385465667/panel-says-chronic-fatigue-syndrome-is-a-disease-and-renames-it

http://www.medicalnewstoday.com/articles/289297.php

Read the IOM report for yourself here:  http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf

Fire Brick Road: poem

~Fire Brick Road~

Down this yellow brick road of fire and pain

There are things that you’ll learn and there’s knowledge you’ll gain.

*

You learn people prefer when you’re funny instead

Of telling the truth about how bad things get.

 *

You’ll figure it out that folks get annoyed

When you tell them you’re hurting when they’re feeling joy.

 *

If someone asks about your health facts,

You must pair each truth with a blessing you have.

*

Otherwise, they will think that you are pathetic,

Even though they may really seem sympathetic.

*

Make sure to be cautious about each complaint,

You’re “sick” now so people expect you to act like a saint!

 *

A bit more advice as you walk the path:

You’ll subtract a few friends, so learn some quick math.

 *

You’re just not fun like they remember,

But hang on to the ones who will love you forever.

 *

If you are grateful, then you will do better

The things that are negative really can fester.

 *

If someone else tries to meet a need,

It’s best to say “thanks!” and learn to receive.

 *

This yellow brick road of fire and ice

Has more stuff like: Doctors, and money, and guilt… OH MY!

 *

But on this road you aren’t alone

God’s with you, and others who limp it in toe.

 *

So when you are ready just reach on out,

Someone will be here; there’s always traffic on this route.

-by A Body of Hope

*************

Yellow Brick Road painting| by Artist Andrea on Etsy | "Fire Brick Road Poem" #RSD #CRPS Nervember Invisible illness. chronic illness. Spoonie. Wizard of Oz. Tongue and cheek poem about how to live with chronic pain. #abodyofhope

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Thank you to Artist Andrea for allowing her awesome Yellow Brick Road painting to be featured. Please go buy one of her unique original pieces from Etsy. Many of her paintings have the spirit of Frida Kahlo. Check them out!

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