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

BeADocToGoTo1

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To add on to what Mary mentioned, have you completed any metabolite and nutritional testing such as Genova Diagnostics FMV, Great Plains Lab Organic Acid Test or Spectracell? Any comprehensive stool tests completed to check for e.g. malabsorption, exocrine pancreatic insufficiency, and microbiome issues, which will also cause nutritional deficiencies and systemic inflammation.

For heart support, have you looked into Ubiquinol (CoQ10) supplementation?
 
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bread.

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hey
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...
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how are you today?

ty!