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galatea

Could Some Of Us Have Me As Well As Pots? Episodes Of Extreme Weakness?

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Since a lot of the symptoms are similar and a lot of people with POTS have extreme fatigue, how do you know if it’s just POTS or ME as well?

Also, does anyone else get episodes of 10 mins-2 hours in my case where you’re too weak to move or even talk? I think it’s called ‘collapse.’

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galatea,

I'm searching for an old post with a link to a study regarding POTS as a continuum of CFS/ME. If I find it, I will repost the link. And Yes, I do get episodes when I am too weak to move and find it extremely difficult to speak. This happens when I over exert myself. I have to be very careful to pace myself. I think there are many people here that find themselves in the same predicament.

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I think Vanderbilt did a study comparing their POTS and POTS/ME-CFS patients and found that nearly all their POTS patients met criteria for ME/CFS as well. They said maybe it was because they were a tertiary care center and seeing "the sickest" POTS patients but it was definitely striking that there were so many correlations between the two.

I know the autonomic nervous system is a huge area of interest for study for people doing research on ME/CFS right now as they are realizing how often it is adversely affected in people with ME/CFS.

There are an awful lot of overlapping symptoms and sure seems like it could all be points along the same spectrum of illness. I know the immunologist I see calls it Neuro-Immune-Endocrine Disease rather than CFS as he feels it's a much more accurate description of all the systems affected by our disease(s).

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Hello

I personally believe they go hand and hand, I'm probably 90% better from when I was the sickest, and the fatigue is still there and more so after (grocery shopping, walking alot, laundry, vacuuming) and it lasts for a few days " the intense fatigue"..Is there a test? And treatment for M.E?

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So far there isn't one specific test (aka biomarker) that can be used to identify ME. It's kind of like POTS in that it requires clinical symptoms in addition to findings on several different tests and is largely a diagnosis of exclusion.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

Here is the link to the 2011 International Consensus Criteria on ME where they attempt to define it more specifically than the vague definition of CFS given by the CDC.

http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf

Here is a link to a primer for practitioners with more specific info regarding specifics for which types of tests are helpful for diagnosis.

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Galatea

I also get short periods of muscle weakness, but my primary illness is apparently periodic paralysis, a genetic neuromuscular disease - sudden changes in my potassium levels cause episodic muscle weakness, post-exercise collapse, fatigue, and problems with my heart and blood sugar. Some people get episodes of complete paralysis, and some don't (mine only came after exercise). Episodes of paralysis or muscle weakness can last minutes or hours (minutes for me). I recently got a potassium monitor to help manage my illness, and I can see that I get muscle weakness when I'm hyperkalemic - so now I can head it off by eating a carbohydrate snack. I recommend that you take a look at the website of the Periodic Paralysis Association.

Dianne

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I have had ME since 1984 and the POTS came on in 2007. I have become very weak and feeble over the past few years and have to do things in short burst and then rest. I lie down to level out my blood and settle my nerves and when I perk up I do a little more and so on.

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Thanks for the interesting replies! Good to know I’m not the only one.

I sometimes think that a lot of ME patients actually have POTS but never get the diagnosis. I was diagnosed with ME originally but the official criteria didn’t completely correspond so I had to literally beg for the tilt test after reading about POTS on the internet.

Just a thought, but maybe CFS doesn’t actually exist, and is just the name they give you when they don’t know what you have. A lot of people diagnosed with it seem to years later discover they have some rare disease or illness. Possibly there are a variety of illnesses which haven’t even been discovered yet.

When I asked the POTS specialist about the fatigue aspect he just said that they don’t understand why some patients experience severe fatigue and others don’t. It’s unfortunate that the doctors understand so little about the fatigue aspect of neurological illnesses.

I just sometimes wonder if I have something else as well, especially because even when the medicines I’ve taken have had some effect on my bp and heart rate, my tiredness/weakness levels don’t improve, which is my main concern!

Dianne, thanks – I’ll look into that website.

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galatea,

I was given a diagnosis of CFS years ago now. It's crappy name for something that is not yet understood. A crappy name because it's so much more than fatigue. I am definitely in that category where I feel the medical world really doesn't know what's wrong with me. But the good Lord knows and I just plug along until my days are fulfilled. Hopefully if they ever find what is going on with CFS patients, they will give it a proper name! I hope you are able to recover from you episodes :)

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I am always weak and tired even when I get up in the morning. I have a friend who thinks she has chronic fatigue. She is doing some changes in diet and taking B vitamins and she has seen some improvements. She told me that I should look into that based on what I'm dealing with.

What kind of a doctor can help with this? I heard that some doctors don't even believe that chronic fatigue exists :/

Can someone explain what ME is please?

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I don't know about ME, but I am on Mestinon, which was both used for Myasthenia Gravis and as a nerve gas antidote in the Gulf War, and it has helped my muscle weakness symptoms quite a lot. Pretty much the only effective med I'm on. It does come with side effects, but overall the net benefit is good.

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I just sometimes wonder if I have something else as well, especially because even when the medicines I’ve taken have had some effect on my bp and heart rate, my tiredness/weakness levels don’t improve, which is my main concern!

Dianne, thanks – I’ll look into that website.

Hi Galatea, I am very much like you. I've never been dx with CFS or ME but do fit the Canadian Consensus Criteria on CFS/ME to a large degree. Like you, I wonder if the symptoms of CFS/ ME is actually just a piece to a larger puzzle. Thankfully, last year an endocrinologist saw that my strange neurological symptoms, in part, resembled POTS/dysautonomia and I was diagnosed 4 months later with POTS, but not without first being put in a neurological ward (OMG-horrible experience) and then was put on a seizure ward for 1 wk. where I was hooked up to monitors 24/7 to rule out seizures. I was put on Mestinon which helped the tachycardia issues and the weakness. I was so relieved! But the muscle weakness returned 2 months later. I still have not found a drug to work for my chronically low blood pressure and bradycardia (when I'm not tachy). Like you, the PEM is my most distressful symptom as it has the tendency to cause severe weakness that resembles cataplexy at times. I also get frequent severe headaches/migraines.

I looked at Dianne's website - I definitely have many aspects of the Periodic Paralysis although I've only experienced the night paralysis a few times.

I do understand your confusion and concern Galatea. I have never had disabling fatigue as a symptom but finding it disturbing to become so weak, so suddenly. Have you ever had slurring of speech and do your eyes glaze over during the periods of extreme weakness?

It's sad when all of us with mysterious illnesses must play doctor. We are often to ill to seek help let alone become our own advocate :(

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Dear Charlotte1,

I noticed that you said you have bradycardia. Is it caused from your POTS? I have been having trouble with bradycardia lately and I was wondering if it was just another awful symptom of POTS? How low does your heartbeat get? The lowest mine has EVER been is around 43. I'm really concerned so any info you could give me would be greatly appreciated! Thanks so much!

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Dear Charlotte1,

I noticed that you said you have bradycardia. Is it caused from your POTS? I have been having trouble with bradycardia lately and I was wondering if it was just another awful symptom of POTS? How low does your heartbeat get? The lowest mine has EVER been is around 43. I'm really concerned so any info you could give me would be greatly appreciated! Thanks so much!

Hi Lheartfrogs, I can't really offer you any advice as I am still searching for answers myself. I can though tell you this -

I have always had a low pulse yet doctors always told me that meant I was healthy, eventhough I was often symptomatic. My bradycardia became more of an issue when last year, after onset of POTS, it was discovered during hospitalization for catapleyx-type episodes that my pulse was as low as 33 at night and low 40's during the day. A pacemaker was never really discussed seriously b/c the POTS/dysautonomia situation might have still caused me the horrible symptoms.

I do believe that this illness, whatever it's called, is the reason for my vitals being all over the map ie. this morning my blood pressure was 104/59 with pulse of 51. After eating, my blood pressure fell to 85/53 with pulse 74. That post prandial hypotension never occured before becoming ill. Another thing that is worrisome is my sometimes very narrow pulse pressure (7) ie. 88/80 and other times very wide pp (65). ie 103/38.

Regardless, often my vitals don't correspond with my horrible symptoms so for me, more than wacky vital stats is going on. I have huge issues with PEm involving neurological deficits. Sometimes it leads to cataplexy, other times cataplexy happens from just doing nothing.

Sorry I can't be more helpful to you.

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Galatea

I also get short periods of muscle weakness, but my primary illness is apparently periodic paralysis, a genetic neuromuscular disease - sudden changes in my potassium levels cause episodic muscle weakness, post-exercise collapse, fatigue, and problems with my heart and blood sugar. Some people get episodes of complete paralysis, and some don't (mine only came after exercise). Episodes of paralysis or muscle weakness can last minutes or hours (minutes for me). I recently got a potassium monitor to help manage my illness, and I can see that I get muscle weakness when I'm hyperkalemic - so now I can head it off by eating a carbohydrate snack. I recommend that you take a look at the website of the Periodic Paralysis Association.

Dianne

Dianne-

Looking at this website, it looks like this is a congenital thing. Wondering if you've had symptoms since childhood? Am I correct in assuming that this would be an unlikely diagnosis for those of us who had an onset of symptoms later in life, for example a post-viral onset? Or am I reading the info incorrectly?

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Chaos

Periodic paralysis is caused by genetic mutations (around 70 recognised so far). The mutations have to begin somewhere, so while the condition usually runs in families it can also pop up in isolated individuals. Different mutations can present in different ways, and the same mutation can present very differently in families - some people with a particular mutation can be very badly disabled, while others with it might be only slightly affected (eg with mild fatigue, or with very infrequent episodes of muscle weakness or collapse/paralysis).

A common trigger across the various mutations is resting after exercise. Although I've been ill since my teenaged years, I didn't start collapsing after exercise til I was around 36-37 years. I've heard of others with the disease who didn't start having episodes of paralysis until their 50's. Apparently lot of people with the disease are very active in their early years, but reach a point where they are pretty much crippled by it - apparently exercise can cause damage, leading to permanent muscle weakness.

The important thing about this class of diseases is that they are diagnosable and treatable, but you have to have your potassium checked during an episode - otherwise, pathology results are normal. If anyone wants to be checked for the condition, I suggest that you refer to the physician list on the PPA website - it is better to take it up with a doctor who knows about it, and knows how to assess and treat it.

Dianne

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Hi all, I've found an article on some research from the Uni of New South Wales here in Australia that confirms their recent findings on the link between CFS and autonomic dysfunction. It can be found by googling:

"Professor Andrew Lloyd CFS Autonomic System Under Stress"

My specialist who treats me for POTS certainly feels CFS and POTS are both forms of Dysautonomia.

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Macca- I'm really curious to read the article. Thanks for posting it!

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Macca and Chaos, I have removed the link as it didn't show the article (I couldn't find it reading through the first 3 or 4 pages). Googling (as Macca suggested) does the job, which is why I made some slight changes to your posts as well. Hope this helps, and thanks for providing the article Macca!

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Many docs think that POTS is on the same spectrum as ME, but we're 'lucky' in a way because POTS is more measurable. I think most people with POTS suffer from ME symptoms as well. The post-viral aspect to both suggests they may often have a common underlying cause, and I try to keep an eye on new ME research.

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