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B-leave

Weak muscles arms and legs

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I still don't have a definitive diagnosis of dysautonomia. A big concern of mine is the extent of fatigue and muscle weekness. 

Nit enough strength to cut a piece dinner meat. Does anyone experience this magnitude and what caused this?

thanks

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Have you been checked for autoimmune diseases? They aren't uncommon with POTS. I got to that point, but it turned out I also had RA and pernicious anemia. 

I literally did not have enough strength or stamina to eat. People cut my meat for me for a while. I know you aren't exaggerating, unfortunately. 

Hang in there. This process takes time. I honestly thought I might die before someone figured it out. I am MUCH better now.

Kim 

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I have extreme muscle weekness and fatigue that comes and goes along with a "baseline" weekness. My dr believes it is due to a lack of profusion when my blood pressure gets really low. Makes sense for me since one of my presyncope symptoms is weekness that can cause me to collapse.  I also have chronic anemia and intermittent malnutrition contributing to my weekness. 

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Are you drinking plenty of water and lots of salt??

I only ask because I sometimes forget if I don't have it right next to me and by day 2 of less fluids and salt, I am extremely weak.

Debbie

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oh,oh !! DO you have any compression stockings?? Knee highs? anything?

My compression stockings, pants (capri and leggings), and shirts (tank, short sleeve and long sleeve)has allowed me to do more in upright position than I did before. I know they can be pricey but well worth it.

Debbie

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Dysautonomia is associated more with fatigue rather than weakness. But there are many causes of Dysautonomia which involve weakness. The first thing you need to do is get an EMG done by a Neurologist specializing in Neuropathy. If your EMG is normal then you need extensive bloodwork looking for different types of anemia, hormonal imbalances, an autoimmune Dysautonomia panel sent to the Mayo Clinic to look for paraneoplastic syndrome especially. And lastly if all that is normal I would see a Mitochondrial Disease specialist and get a Whole Exome and Genome blood test and possible muscle biopsy. Mitochondrial are bacteria that live in symbiosis with humans and manufacture all of our energy for us.

 

good luck

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I had terrible weakness everywhere during my worst spells with POTS and I still have periodic weakness. It can feel really scary. Compression socks or hose helped. Hang in there!

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I have had weakness in my legs and hips for years and was diagnosed with neuropathy,  and need a cane when out and about just for balance. I also have numbness in both legs so it makes it difficult to walk too. SO a Neurologist-as stated above-who understands neuropathy, is important

My compression stockings, pants (capri and leggings), and shirts (tank, short sleeve and long sleeve)has allowed me to do more in upright position than I did before. I know they can be pricey but well worth it.

Debbie

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Lambert Eaton (LEMS) disease is a autoimmune disease (calcium channel antibodies) that's chief symptom is muscle weakness.  The majority of LEMS patients Ive talked to suffer from POTS as well.

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I have the same question. Mine is different from generalised weakness however, it's like something 'runs out' or a nerve impulse doesn't travel.. It's hard to explain. Waking up gagging, inability to control muscles for breathing (as in watching my oxygen saturation go down on my home oximeter).... usually happens at night first arms then throat and chest muscles become involved. The first I remember it was when I was on a trial of mestanon. Whenever the dose would begin to wear off I would get this terrifying weakness. Though over all the mestanon made me more functional (able to stand/walk).. it wasn't worth the inability to control my breathing, etc that started an hour or two before my next dose was due, and I quit taking it, but the weakness symptoms have remained. My specialists have kinda waved this off as the beginnings of 'cholinergic crisis'... but I don't think that's it because it was when the mestanon would wear off not when it peaked... It does make me wonder however, if it's neurotransmitter driven. Honestly I don't know, and it's one of my most confusing/terrifying symptoms. Ideas all? It's like I can't move that body part... Like my husband putting my PJs on and laying me down, and then waking up two hours later from a dead sleep gagging cuz my throat muscles aren't working right. 

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On 7/21/2017 at 7:26 PM, B-leave said:

I still don't have a definitive diagnosis of dysautonomia. A big concern of mine is the extent of fatigue and muscle weekness. 

Nit enough strength to cut a piece dinner meat. Does anyone experience this magnitude and what caused this?

thanks

Still don't know what is causing it, but mestinon is addressing it for me. I was feeling too weak and fatigued to lift my spoon to my mouth; I was getting other people to cut my meat at that point! 

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57 minutes ago, GardenGal said:

I have the same question. Mine is different from generalised weakness however, it's like something 'runs out' or a nerve impulse doesn't travel.. It's hard to explain. Waking up gagging, inability to control muscles for breathing (as in watching my oxygen saturation go down on my home oximeter).... usually happens at night first arms then throat and chest muscles become involved. The first I remember it was when I was on a trial of mestanon. Whenever the dose would begin to wear off I would get this terrifying weakness. Though over all the mestanon made me more functional (able to stand/walk).. it wasn't worth the inability to control my breathing, etc that started an hour or two before my next dose was due, and I quit taking it, but the weakness symptoms have remained. My specialists have kinda waved this off as the beginnings of 'cholinergic crisis'... but I don't think that's it because it was when the mestanon would wear off not when it peaked... It does make me wonder however, if it's neurotransmitter driven. Honestly I don't know, and it's one of my most confusing/terrifying symptoms. Ideas all? It's like I can't move that body part... Like my husband putting my PJs on and laying me down, and then waking up two hours later from a dead sleep gagging cuz my throat muscles aren't working right. 

GardenGal, this sounds so scary. Of course my mind wants to explain it away as sleep paralysis, sleep apnea, or nocturnal asthma, because those are things I understand. Did they ever let you try extended release mestinon? Or were they too worried about cholinergic crisis?

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On 10/16/2017 at 6:06 PM, girl said:

GardenGal, this sounds so scary. Of course my mind wants to explain it away as sleep paralysis, sleep apnea, or nocturnal asthma, because those are things I understand. Did they ever let you try extended release mestinon? Or were they too worried about cholinergic crisis?

Good idea, over all the muscle problems (weakness and pain) when the doses were wearing off (arms and back also not just throat), that I weaned off of it after several weeks even though it was helping with orthostatic intolerance... I'm glad it's been helpful for you however

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On 10/16/2017 at 8:06 PM, girl said:

GardenGal, this sounds so scary. Of course my mind wants to explain it away as sleep paralysis, sleep apnea, or nocturnal asthma, because those are things I understand. Did they ever let you try extended release mestinon? Or were they too worried about cholinergic crisis?

My Cardiologist has referee me to a sleep clinic bc of some of the same things GardenGirl is describing. He thinks it is causing sleep apnea. 

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I also experience the muscle weakness. For me it is most notable in my arms and hands, but also have it in my legs. I do not know what causes it, but yes, cutting things is difficult for me too. I was diagnosed in 2008 with POTS.

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