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Muscle Weakness..


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I no longer get the racing heart thanks to medication - but I continue with what seems like progressive muscle weakness. My legs get tired and I start to drag my feet and almost trip sometimes...have to use arms to push myself out of chairs. A person that sizes you for orthotics and different braces etc... told me I was losing muscle mass in my hands after he looked at them - saw a hollow at the base of my thumb? Anyway no neuro has yet given an explanation for my weakness. Recently a neurosurgeon thought it could be my neck with ruptured disks and mild cord compression and severe foraminal stenosis... but other people say that's kinda normal for someone 53. I feel like I'm getting some sort of weird myopathy thats getting worse - or a muscular dystrophy of sorts...

I know lots of you get this heaviness and weakness in your legs and body too.....has anyone ever told you the 'why's' of having this and how it relates to POTS kinds of things? I have a connective tissue disorder - an inherited one - though they aren't sure which collagen is at fault - 1,3, 5, or 6..

Do many of you have 'neck' issues too? Very curious why our muscles fatigue so easily - causing increased tone, spasms, pain etc... and decreased function too.

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I get neck soreness and soreness at the back of my head that feels as though I've been clubbed with a baseball bat - I'm much, much sicker generally if I don't treat it. My neurological physiotherapist once mentioned that it seemed my muscles weren't releasing properly - I guess she found that my muscles weren't behaving as they were supposed to. It doesn't surprise me, given that almost no part of my body seems to work optimally.....


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Yes, I have that heaviness that gets worse as the day goes on, regardless of pushing fluids and other POTS treatments. By the end of the day, I often have twitches, tingles, and coldness in my legs particularly. I've been complaining of my arms hurting to my PCP but just gave up and have tried to live with it. When I had my strength tested this summer, my grip strength is in the 10th percentile for my age and gender. This is wierd because I haul my toddler around all day long. After seeing neurosurgeon, a physiatrist, and my PCP, the consensus is that I have some large fiber neuropathy particularly along S1. But my small fiber neuropathy is probably responsible for the coldness and tingles.

Two weeks ago I was on a 12-day tapered dose of prednisone which alleviated all these symptoms and I felt so GREAT! Now, that effect has worn off.

I don't have any known connective tissue disorder. I've been in 2 bad car accidents, the last one required 2 hip surgeries and I limped severely for 2 years. I think that my POTS fatigue contributes to my overall back pain because I'm too tired to maintain good posture much of the time, and I'm too tired to do my PT exercises regularly. Add in lingering pain from the accidents as well as the SFN issues and here I am.

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