Pain and weakness in arms, shortness of breath, nausea?

Deepwater

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Diagnosed with ectopic heart beats some years ago. Have also tended to be very out of breath when I first lie down ever since getting ME. Last year or two a lot of nausea as well - I thought maybe this was all due to POTS.

Last few months I've also had increasing pain and weakness in arms. The pain is mainly in the upper arms, running downwards from front of armpit. When I have this I can't seem to raise my arms normally at all. Anybody any ideas, please?
 

JaimeS

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I'm sorry you're experiencing this @Deepwater -- I had this much worse in the past than I do, now. In my case, the pain was 'burning' and I characterized it as some sort of acidosis. I think that the weakness / heaviness / pain is something all of us experience at some point or another, to varying degrees.
 

Gingergrrl

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Have also tended to be very out of breath when I first lie down ever since getting ME.
Are you short of breath when you stand/walk or only when you lie down? Your post interested me b/c I also have POTS and my two worst symptoms were shortness of breath and pain/muscle weakness in arms. (I guess to fully clarify, my very worst symptom was anaphylaxis but that has not happened in almost a year so no longer thinking about it vs. the other stuff).
 

Rossy191276

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Your muscle weakness, breathing difficulties, and nausea struck chord with me as well,,,

After fluctuating between mild to severe symptoms over the last 18 months I've become completely bed bound and to weak to speak (I can whisper 10-20 words per day) in the last 3 months after crashing during my wedding... Due to this I have spent a couple of weeks putting together a document so I can communicate with doctors... I would be interested to hear any insights re my symptom picture from those of you who have done so much great research as I have just started reading the threads on CellTrend Lab work and also autoantibody ANS matters which seem potentially relevant for me:

1.) Post-Exertional Body Shutdowns (lasting 8-10 hours after exerting energy e.g., moving bowels, social engagement, previously it required more exertion to cause these episodes i.e., exercise)

· Visible tremoring/Shaking in legs and core

· Breathing- very weak and painful across middle of chest centred around sternum….laboured breathing meaning I can only take very shallow breaths due to pain and weakness across chest (I can sometimes only take very shallow breaths for several days after major shutdowns).

· Speaking- Become too weak to speak and have to text communications

· Digestion- digestion shuts down and body will not accept food

· Cannot tolerate noise, movement or seeing people (when a new person comes into the room the emotion of it is too much to tolerate/listening to them talk is overwhelming and I feel like I am shutting down further, noise can send vibrations through body that are hard to tolerate)

· Heart rate- resting heart rate is 15-20 beats higher than usual at resting during shutdowns

· Pins and needles/numbness in arms

· Chemical Release- this is something that feels like something Is being released out of back of head and travelling down back and throat

· Overall- It is a level of fatigue/ache/all over hurt along with other symptoms that feels like a hell on earth that I could never imagined was possible before living through it.


2.) Post Shutdown Very Severe Symptoms (these follow shutdowns for periods of weeks or months which include symptoms such as:

· Extreme general bedridden fatigue/exhaustion/weakness in varying degrees that require still quiet rest with no stimulus

· Inability to talk (can’t produce energy or power required to talk- can whisper up to 20 words on a good day presently)

· Sporadic difficulty with digestion, coupled with nausea (though not vomiting)

· Inability to breathe deeply (seems like I am too weak, fatigued chest wall muscles)

· Can evoke constipation (use senokot, laxatives to loosen stools and reduce effort required for moving bowels as effort of moving bowels causes extreme exhaustion that can last all day)

· Yawning/sneezing becomes more strenuous and cause stress on chest and breath

· Rapid/extreme heart rate rise from any exertion/emotion e.g rolling over in bed can result in 30 beat hr rise, watching sport on tv can result in a similar experience

· Brain fatigues more easily with exertion (though nowhere near as badly as during 2015-2016 illness onsets)

· Personal interactions/noise can exacerbate symptoms on bad days.

· Tremors/shakes in legs/stomach for 5-10sec upon waking from sleep before muscles will ‘activate’


3.) Extreme Muscle Weakness/Failure/Twitching

· Legs can have quick onset (e.g., in current relapse I went from being able to walk within apartment virtually symptom free for several months to being too weak to walk to toilet and back (about 5 metres) within 3 days and having difficulty standing for several seconds within a week;

· Arms generally less affected but typing on computer can result in extreme weakness in forearms/hands or completing daily activities evokes muscle weakness)…

· Upper stomach- especially twitching after bowel movements


4.) Severe Autonomic Nervous System Dysfunction


· Extreme Orthostatic Postural Tachycardia (Resting Lying HR 60-65, shifting into bedside commode and sitting upright to move bowels 120-140 which can then stay at 80-90 for an hour afterwards and feel effects for the rest of the day; on a bad day rolling over in bed can result in 30beat hr rise)

· Blood Pressure- Lying blood pressure average 100-5/75….Sitting on toilet 130-5/90-115….Have not been able to test sitting/standing since bedbound

· Bradycardia after exertion (sometimes 42-55)

· Intolerance of Temperature Change (cold e.g., below 23 degrees causes visible shaking, hot e.g., above 28 causes dizziness, lightheadedness, rapid heart rate rise)

· Don’t seem to sweat anymore (although I stay in 23-28 degree range whenever possible)

· Extremely dry skin (scaly and flaky on feet and lower legs)

· Circulation Issues e.g., Mottling/Burning Hands when upright

· Difficulty with Digestion- severe difficulty eating sometimes and what seems like inability to digest food coupled with nausea

Thanks for everyones contributions to these forums I find them very comforting especially during such difficult times...
 

Deepwater

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Are you short of breath when you stand/walk or only when you lie down? Your post interested me b/c I also have POTS and my two worst symptoms were shortness of breath and pain/muscle weakness in arms. (I guess to fully clarify, my very worst symptom was anaphylaxis but that has not happened in almost a year so no longer thinking about it vs. the other stuff).
I'm usually not aware of being out of breath until I lie down. In fact, on first lying down I feel relief, then before I know it I am gasping and my heart feels as though it's also in distress. If I lie down long enough it rights itself. In fact, I reckon it's a good indicator of how long I need to lie down since I' find I'm not rested if I get up before it's settled. Breathing is deep and urgent, and it's hard to get the breath full in before my chest starts shoving it out again. Occasionally I find myself forced to take two in breaths consecutively instead of in-out. Once I did three consecutive in breaths and nearly popped.
This symptom came with the ME, let up after a few years when I was more mildly affected, then returned when I had a relapse about 8 years ago. If I manage to lie down more frequently (i.e. stay up for shorter periods) and do less, it is nowhere near as bad.
 

Deepwater

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Your muscle weakness, breathing difficulties, and nausea struck chord with me as well,,,

After fluctuating between mild to severe symptoms over the last 18 months I've become completely bed bound and to weak to speak (I can whisper 10-20 words per day) in the last 3 months after crashing during my wedding... Due to this I have spent a couple of weeks putting together a document so I can communicate with doctors... I would be interested to hear any insights re my symptom picture from those of you who have done so much great research as I have just started reading the threads on CellTrend Lab work and also autoantibody ANS matters which seem potentially relevant for me:

1.) Post-Exertional Body Shutdowns (lasting 8-10 hours after exerting energy e.g., moving bowels, social engagement, previously it required more exertion to cause these episodes i.e., exercise)

· Visible tremoring/Shaking in legs and core

· Breathing- very weak and painful across middle of chest centred around sternum….laboured breathing meaning I can only take very shallow breaths due to pain and weakness across chest (I can sometimes only take very shallow breaths for several days after major shutdowns).

· Speaking- Become too weak to speak and have to text communications

· Digestion- digestion shuts down and body will not accept food

· Cannot tolerate noise, movement or seeing people (when a new person comes into the room the emotion of it is too much to tolerate/listening to them talk is overwhelming and I feel like I am shutting down further, noise can send vibrations through body that are hard to tolerate)

· Heart rate- resting heart rate is 15-20 beats higher than usual at resting during shutdowns

· Pins and needles/numbness in arms

· Chemical Release- this is something that feels like something Is being released out of back of head and travelling down back and throat

· Overall- It is a level of fatigue/ache/all over hurt along with other symptoms that feels like a hell on earth that I could never imagined was possible before living through it.


2.) Post Shutdown Very Severe Symptoms (these follow shutdowns for periods of weeks or months which include symptoms such as:

· Extreme general bedridden fatigue/exhaustion/weakness in varying degrees that require still quiet rest with no stimulus

· Inability to talk (can’t produce energy or power required to talk- can whisper up to 20 words on a good day presently)

· Sporadic difficulty with digestion, coupled with nausea (though not vomiting)

· Inability to breathe deeply (seems like I am too weak, fatigued chest wall muscles)

· Can evoke constipation (use senokot, laxatives to loosen stools and reduce effort required for moving bowels as effort of moving bowels causes extreme exhaustion that can last all day)

· Yawning/sneezing becomes more strenuous and cause stress on chest and breath

· Rapid/extreme heart rate rise from any exertion/emotion e.g rolling over in bed can result in 30 beat hr rise, watching sport on tv can result in a similar experience

· Brain fatigues more easily with exertion (though nowhere near as badly as during 2015-2016 illness onsets)

· Personal interactions/noise can exacerbate symptoms on bad days.

· Tremors/shakes in legs/stomach for 5-10sec upon waking from sleep before muscles will ‘activate’


3.) Extreme Muscle Weakness/Failure/Twitching

· Legs can have quick onset (e.g., in current relapse I went from being able to walk within apartment virtually symptom free for several months to being too weak to walk to toilet and back (about 5 metres) within 3 days and having difficulty standing for several seconds within a week;

· Arms generally less affected but typing on computer can result in extreme weakness in forearms/hands or completing daily activities evokes muscle weakness)…

· Upper stomach- especially twitching after bowel movements


4.) Severe Autonomic Nervous System Dysfunction


· Extreme Orthostatic Postural Tachycardia (Resting Lying HR 60-65, shifting into bedside commode and sitting upright to move bowels 120-140 which can then stay at 80-90 for an hour afterwards and feel effects for the rest of the day; on a bad day rolling over in bed can result in 30beat hr rise)

· Blood Pressure- Lying blood pressure average 100-5/75….Sitting on toilet 130-5/90-115….Have not been able to test sitting/standing since bedbound

· Bradycardia after exertion (sometimes 42-55)

· Intolerance of Temperature Change (cold e.g., below 23 degrees causes visible shaking, hot e.g., above 28 causes dizziness, lightheadedness, rapid heart rate rise)

· Don’t seem to sweat anymore (although I stay in 23-28 degree range whenever possible)

· Extremely dry skin (scaly and flaky on feet and lower legs)

· Circulation Issues e.g., Mottling/Burning Hands when upright

· Difficulty with Digestion- severe difficulty eating sometimes and what seems like inability to digest food coupled with nausea

Thanks for everyones contributions to these forums I find them very comforting especially during such difficult times...

I'm so sorry to hear you're as ill as this. I'm nowhere near that bad, fortunately. I just need to lie down every two hours, or a little more often on a bad day. I recognise most of your symptoms though to a lesser extent.
I too stopped sweating, but the sweating returned when I started taking combination of supplements recommended by Dr. Myhill - I don't know if that was coincidence or not. I sometimes suffer from night sweats now instead, but at least it's helping with detox.
 

Valentijn

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I'm usually not aware of being out of breath until I lie down. In fact, on first lying down I feel relief, then before I know it I am gasping and my heart feels as though it's also in distress. If I lie down long enough it rights itself.
I have this happen often too, if I'm standing too long. It's as if when I'm still standing, my body can't or won't compensate for the lack of oxygen, but once I'm sitting or lying I start gobbling up the oxygen. Then I can recover after a bit.

Though this doesn't happen when I'm pacing well.
 

Deepwater

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Sorry @Deepwater but I have to ask: congestive heart failure? Out of breath while lying down is worrying.
I sometimes wonder as well, but how do I get my GP to take me seriously? I also have a lot of fluid retention and can't breathe if I bend over, which they are now saying is a sign of heart disease.
 

JaimeS

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It would not be out of the question to have fluid retention in tissues and organs in general in this disease. Do have them run any tests they wish to do to rule it out. Better safe than sorry! I wouldn't say this doesn't mean they're taking you seriously. :)
 

Mary

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@Deepwater - fluid retention, congestive heart failure and nausea can all be symptoms of thiamine deficiency. It's amazing what a B1 deficiency can do - the symptoms can be quite severe. Here are a couple of links: http://healthandscience.eu/index.ph...tamin-b1-thiamine&catid=54&Itemid=327&lang=en
http://www.stewartnutrition.co.uk/nutritional_emergencies/acute_thiamine_deficiency.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3865826/

You may not have congestive heart failure, but a thiamine deficiency would definitely affect your heart and also can cause fluid retention and nausea.

A few years I started taking thiamine (in addition to all the other things I take, including a good B complex) and the B1 caused a noticeable boost in energy. I had read about B1 boosting energy in others which is why I tried it. I started with 100 mg, it was great, and then a day or 2 later I developed severe fatigue which turned out to be low phosphorous. I figured this out because of reading I had done earlier on refeeding syndrome in relation to potassium and methylfolate) (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/). This new fatigue after starting the B1 wasn't due to low potassium (potassium didn't help it plus it felt different) but I suspected low phosphorous - low phosphorous is the hallmark of refeeding syndrome, and drinking lots of kefir, high in phosphorous, helped the fatigue go away.

this is probably way more than you want to know, I just wanted to prepare you in case B1 does help your energy, but then if you are hit with a sudden unusual fatigue a few days later. Most of the reading I've done on refeeding syndrome mentions alcoholics or people ;with eating disorders or people who have been starving and I fall into none of those categories.

BUT - people with ME/CFS seem to have weird unexplained nutritional deficiencies and abnormalities despite often eating much better than most "healthy" people.

I'm currently taking 300 mg. of benfotiamine a day, but I had to work up to this dose. And I still have to take extra phosphorous several times a week - I have a monosodium phosphate supplement now (as well as extra potassium every day)
 

dannybex

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Sorry @Deepwater but I have to ask: congestive heart failure? Out of breath while lying down is worrying.
My heart always has tested fine, yet I can get out of breath just turning around in my bed. Not every time at all, but I would say 3 times a week or so. No doubt impaired circulation (or perhaps hypoxia) but it's probably worth noting that I also have a diagnosis of chronic venous insuffciency (w/pitting edema) most notable in my legs, but really from head to toe.
 

Deepwater

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Thanks for the responses, everybody.
It definitely isn't thiamine deficiency as I've been supplementing with it for over a year now. In fact, I take a lot of different B vitamins.
I did have an ambulatory ECG once because of feelings of heart doing odd things from time to time (bit like a trapped bird), and it did confirm that I have ectopic beats but I was told that is common and it didn't require any further investigation.
The fluid retention is almost entirely in the stomach area and began as soon a I got ill. It piles on if I eat the wrong sort of foods (carbs and sugar) or drink alcohol.
I did used to get swollen fingers a lot in the early days, but that went away.
The breathlessness is oddly positional. I don't e- or at least notice - the problem till I lie down, and then I start panting for breath and breathing feels very laboured. If I've been up too long it can go on for 3 hours or more. The only way to keep it at bay is to lie down at least every two hours for minimum 1/2 hour. Because of the positional thing, I've started wondering if it might be linked to some form of POTS, but looking at the symptoms for congestive heart disease it does sound quite similar to that too.
Jaime, what tests would the doctor need to run for congestive heart failure? I live in the UK and it isn't at all easy to get an NHS doctor to run any tests if they're not in the NICE guidelines for CFS. I'm a waste of scarce public resources, you see - sorry for the moan but that's the way it is.
 

dannybex

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@Deepwater if your 'fluid retention' is 'almost entirely in the stomach area', and gets worse when you eat carbs, sugar, alcohol...it may be related to fatty liver issues. Have you had your cholesterol and especially your triglyceride levels tested?
 

Deepwater

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My cholesterol levels went up as soon as I became ill, and have been too high ever since, but nothing has been done about it.

UK GPs don't tend to bother one's fluffy unmedical head with details of the blood tests they order, but they did run some check on my liver, both when I first became ill and in more recent years, and have been told the results are fine although I don't know what the tests were. I can ask next time I see the doc if I've had my triglyceride levels tested.

I am one of those pwME who feel better after drinking alcohol, but then suffer over the next couple of days whilst clearing the toxins out of the system, so I did find @mariovitali 's theory interesting even though I can't really follow it properly.