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Muscle Difficulty


Foxyblue
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Hello everyone,

I have noticed for the past few months (and it's getting worse), sometimes I get muscle discomfort. For example, today I did my workout routine ( walking on the treadmill and as much stretching as possible). Afterward my muscles felt like I couldn't get them to do what I wanted like squeezing, typing, putting a coat on. It was like I had to make an effort to get them to contract. It's also very, very cold today so maybe that has something to do with it? Just wondering if anyone else has this and if they know why. Thank you all!

Bri

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  • 2 weeks later...

Since I've had POTS I have had all kinds of constant muscle problems -- mostly weakness and loss of muscle mass. It was worst in the first three months. I never noticed any connection to temperature but did notice that if I was having a bad spell, it was worse overall. All of my muscle tests always came out normal, but my doctors always noted that my muscles seemed to be disappearing due to some sort of weird weight loss/POTS and metabolism-related condition that they could never put a name to.

Amy

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I do not have muscle pain, however I do have peripheral nerve issues. I have weakness in my left arm, hip and leg. Over christmas, the left side of my face went numb and started to droop. I have been to the neurologist, and my EMG's and MRI's come out fine, however I look like someone with MS. I work with an immunologist because I have responded to immuno therapy in the past. I would say that my neurological symptoms get worse when I have a cold or infection.

I think seeing a good neurologist is a great idea. I was told that a spinal tap is a bad idea for people with POTS. We end up with bad spinal headaches for a long time. Luckily I was spared that test. My neurologist also said he has seen two other people with POTS, CFS and these neuologial symptoms. Nothing showed up on their MRI's, EMG's or spinal taps. I wish someone would study this.

Rhonda

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Since I've had POTS I have had all kinds of constant muscle problems -- mostly weakness and loss of muscle mass. It was worst in the first three months. I never noticed any connection to temperature but did notice that if I was having a bad spell, it was worse overall. All of my muscle tests always came out normal, but my doctors always noted that my muscles seemed to be disappearing due to some sort of weird weight loss/POTS and metabolism-related condition that they could never put a name to.

Amy

Amy you seemed to be explaining my symptoms... I also have weakness and loss of muscle mass... I lost weight last year and even though I have recovered some (which I am losing again), I have not recovered my muscle mass... I feel painful when someone touches me a little more strong (though it should not be painful) :wub:

Are you doing something about it?

I have a TTT on Monday with my Cardiologist, do you think I should tell him?

I am sorry Bri, but I cannot excercise. No idea how I would feel if I did.

On the other hand, I cannot do the homework (at least not many tasks the same day...)

Love,

Tessa

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Hi, folks!

See my recent post asking if compression hose could cause muscle loss.

During the last year I have been very sendentary, but have had very few POTS symptoms, and quit wearing my hose.

Then I tried walking and ended up with inflammed feet and osteoarthritis of both knees, which appears to be caused by weak muscles that cannot support me.

Can people with POTS build up muscle mass with exercise? I don't have enough money for doctor appointments with a specialist anymore (diagnosed by Dr. Low at Mayo in 1995), so I'd love to hear opinions on how to build back muscle mass without excrutiating pain.

How do you explain to a physical therapist that you are exercise intolerant? Nobody believes this illness is real.

Elegiamore

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Starting very slowly with few reps in a small range of motion might be the way to go.

Do you know which part of the knee has arthritis? The exercises may differ.

I have eds with arthritis in both kneecaps, and loose ligaments. I wear heavyduty braces that look cumbersome, but really allow me to get around much better. Which ultimately stops my muscles from getting too weak. I've had pts try to convince me to shed the braces, but I'm then in so much pain I can't do anything. I figure I'm better off in braces that let me be more active generally.

Good pt, releasing those muscles which are tight with trigger point release, braces, and backing off when I flare have helped me a lot. My kneecaps used to be too painful to even walk. Not they are only a little bothersome, and not all the time.\

Hip strength is important for keeping knees aligned.

Your shoes are also important.

I cannot have sudden increases in activity-- a recipe for pain. But I can add 1 minute to the bike or to walking every 2-3 days.

I got a rx for the braces and they were covered. They are custom and an orthotist fitted me.

I really have to listen to my body. There are days (like today), when I just can't do the stationary bike, 'cause my knees are too sore. I try to go for a BRIEF walk then instead.

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Starting very slowly with few reps in a small range of motion might be the way to go.

Do you know which part of the knee has arthritis? The exercises may differ.

I have eds with arthritis in both kneecaps, and loose ligaments. I wear heavyduty braces that look cumbersome, but really allow me to get around much better. Which ultimately stops my muscles from getting too weak. I've had pts try to convince me to shed the braces, but I'm then in so much pain I can't do anything. I figure I'm better off in braces that let me be more active generally.

Good pt, releasing those muscles which are tight with trigger point release, braces, and backing off when I flare have helped me a lot. My kneecaps used to be too painful to even walk. Not they are only a little bothersome, and not all the time.\

Hip strength is important for keeping knees aligned.

Your shoes are also important.

I cannot have sudden increases in activity-- a recipe for pain. But I can add 1 minute to the bike or to walking every 2-3 days.

I got a rx for the braces and they were covered. They are custom and an orthotist fitted me.

I really have to listen to my body. There are days (like today), when I just can't do the stationary bike, 'cause my knees are too sore. I try to go for a BRIEF walk then instead.

Mkoven,

Boy, you are a brave person! What a challenge you face!

Thank you so much for the advice - right now, even one stretch anywhere in my body hurts. I injured myself by trying hip and knee exercises. The pain in my groins keep going on, 10 days after I stopped any exercise. I just got some new shoes, as the old ones were the reason I damaged myself so much - didn't know that walking in bad shoes could hurt you so much.

I believe that I have trigger points that need releasing all over my body, but don't I need to see a pain center to analyze this? Can't find a rheumatologist that knows the difference between trigger points and tender points yet - would a PT know this? My otho was not helpful at all, and suggested I find another doctor when I suggested I might have fibro and have POTS. Should I get a copy of my x rays and reports before I see a PT?

I thought that biking was too rough on the knees; they suggested elliptical to me. What is your opinion?

Bri...what did you find about muscle weakness and muscle mass loss? I am also wondering if this is part of POTS, or just because I was negligent and didn't move around enough.

Thanks again,

Elegiamore

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I have a lot of muscle cramping and stuff, but it's typically due to my potassium levels. Also chronic fatigue will do it. I am totally exercise intolerant, so can't address that for you.

I think it's all just part of Oi. But as with anything, if it's new or getting worse, the best thing to do is get it checked out....good luck sweetie.

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I've worked with a pt and massage therapist on identifying my trigger points. But there is a great book by Clair DAvies that describes where you may have them, depending on the site of your pain. I use a foamroller, thercane, and hard rubber ball to roll over and release them.

I don't know that xrays would necessarily help.

It's somewhat individual whether a bike will hurt your knees. You could try, and if it increased your pain, then stop immediately. I can't do the elliptical...it really varies.

A physiatrist might help...

Good luck!

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