legs, body feel too weak to deal with hardness of floor, chair etc

[Rlman]

I'm 30 years old, and have been ill with severe cfs for the past 7 years. I basically feel too weak to stand and can walk only a few steps at a time before exceeding my energy limits. so mostly bedroom-bound (though can slide down stairs to go out to appointments or dropped off to cafe or to sit outside on porch). i eat with plastic cutlery bc arms are too weak to hold metal cutlery. i sit when i take a shower. if i exceed my energy limits, i become so weak that i have to lie in bed in fetal position (and only able to whisper) till energy recharges, which can take days.

I have been experiencing some new symptoms:

a)1.5 years ago the wooden chair i normally sit on in my bedroom started feeling too hard for my butt, so since then i have needed to sit on a pillow on that chair. before then, i have sat on that same chair for 15 years without it ever feeling too hard for me and never needing a pillow.

b) 2.5 years ago i became too weak to click on the built-in laptop mouse that is below the keyboard as my arm muscles became too fatigued from clicking, so i now use a separate mouse that is plugged into the laptop and requires less force to click

c) until last winter i was able to comfortably sit on the bench on my front porch while wearing my hiking shoes (including orthotic insoles) or snow boots (no orthotic insoles). in winter 2016-2017, for the first time, i was unable to sit in my hiking shoes on the bench as my legs felt too weak to do so, as if the resistance from the cement floor was too strong for my legs too handle. but if i put a blanket under the hiking shoes, it was fine, my legs could handle that. During that winter i could still wear the thicker snow boots comfortably on that porch/bench. now this winter, even when wearing the snow boots, my legs feel too weak to sit on the porch, as if the cement floor resistance is too hard on legs. so things have deteriorated. so now I have been sitting on a chair which is higher than the bench and which allows my legs too hang so they don't touch the cement floor of the porch. this way my legs don't get tired as they would if resting on the porch.

- one day a few weeks ago i did try sitting on the bench with snow boots and my legs lost so much energy that even at home at my desk i needed to put a blanket under my feet as they felt too weak to rest on the floor, they just felt they couldn't deal with the resistance of the floor. i hope i am explaining this feeling correctly.

- btw my arms also need padding underneath them if resting on a hard surface which is provided by my clothes layers/jackets. when i was healthy i never needed such padding.

*Note 1: i have very flat feet and wear insoles. However my insoles were made before the feet became even flatter during this illness. so i should probably get new insoles. the insoles help a lot, without them i would be unable to walk as much as i can, my legs and body feel like they lose all their energy almost instantly if i try walking barefoot. also my thighs ache a lot if barefoot.

*Note 2: my thighs often ache, including when i try being barefoot without insoles though also when wearing insoles like when legs feel too weak to deal with cement floor of porch in hiking boots point C. feel like the bone is aching rather than muscle though i could be wrong.

my questions are:

1) is the deterioration in points a,b,c due to muscle wasting/deconditioning? or is it due to loss of bone density? or due to flat feet and inappropriate insoles (though if so why would things get worse the past year if have flat feet for many years)? or is something else causing all of this?

-i have lost muscle the past few years for sure. and have weight loss even though have normal appetite and eating the same foods and amounts as previous years, no digestion issues from what i can see.

2) have other people with such long periods of inactivity experienced such symptoms?

3) why would my arm suddenly be unable to click on the laptop mouse if i have been doing so daily until then, which i though would maintain my arm muscles?

Thank you everyone for reading this long post! Best wishes to you all!

 

[pattismith]

@Rlman , I feel sorry to read you are so weak.

Did you notice any weakness in your face muscles. For example did you notice if your eyelids are droping more than before. (This can be difficult to see, and sometimes it's easier if you can see on a photograph).
Or did you notice if some of your wrinkles are less pronounced than before?

 

[Rlman]

@pattismith I haven't noticed any weakness in my face muscles. my eyes do feel like they want to be closed (take energy to keep them open) but when they are open, i don't think the eyelids are drooping more than usual. my wrinkles are as evident as usual.

 

[PatJ]

is the deterioration in points a,b,c due to muscle wasting/deconditioning?

I've lost so much weight and can't seem to gain any past a certain point. I need cushions on hard chairs and thick socks because walking on a hard floor can uncomfortable. I spend much of my day bedbound on the softest memory foam bed I could find, but I still need to turn occasionally to relieve pressure on certain points of my body that have little padding.

 

[Rlman]

I've lost so much weight and can't seem to gain any past a certain point. I need cushions on hard chairs and thick socks because walking on a hard floor can uncomfortable. I spend much of my day bedbound on the softest memory foam bed I could find, but I still need to turn occasionally to relieve pressure on certain points of my body that have little padding.

Thanks so much for sharing @PatJ. So i guess muscle wasting could be contributing to these symptoms or at least a big factor.

 

[Rlman]

@PatJ is your weight loss due to muscle loss? how long did you have CFS for before you started needing the cushions/softest mattress?

 

[PatJ]

@PatJ is your weight loss due to muscle loss? how long did you have CFS for before you started needing the cushions/softest mattress?

I've got muscle and fat loss. I think my ideal weight is around 150 lbs. (based on being male, and 5' 10"/178cm tall) but at the moment I weigh 115 lbs. My weight fluctuates and according to the last couple of years 116 lbs. is my plateau. At my lowest I was 98 lbs.

My weight gradually reduced as my health declined. I've had ME since 2003 so I don't remember much from the early days (time and brainfog conspiring against me). As a guess I would say it was between 2009-2012 that hard chairs were becoming uncomfortable.

 

[Rlman]

thanks for the info @PatJ . Sorry to hear you have been ill for so long and are mostly bedridden I wish you a speedy and full recovery to vibrant health!

 

[Rlman]

Just want to update that my legs were too weak to be dangling from the chair so i put a thick blanket for them to rest on.

I can't sit on the porch bench even with padding under thick-soled snowboots. I lost a dangerous amount of energy when I attempted to do so a few months ago. So thighs /legs have gotten weaker. Btw, sitting on the bench causes me to feel more pressure on my thighs/legs than the higher chair when my feet are resting on the cement floor as it lower. But I could sit on the bench without padding under feet in previous years.

Has anyone else who has been unable to exercise for many years experienced such symptoms of needing more padding??? is this due to muscle loss or bone density loss or something else???

 

[Rlman]

@Hip, @Gingergrrl , @Sushi do any of you experienced forum members have any input by any chance? thanks for all you do on this forum!

 

[Hip]

The Canadian consensus criteria says there can be muscle weakness in ME/CFS, but usually ME/CFS patients are not that limited by muscle weakness, but more by the PEM that appears after physical exertion using your muscles.

So for example, a severe patient may be able to walk for a few minutes along the street, but then later will be hit by PEM.

It might be worth seeing a doctor in case your muscle weakness is due to something other than ME/CFS. There is a class of muscle diseases called myopathies, which result in muscular weakness. Perhaps have a look at polymyositis, which is one of the myopathy illnesses, and which can involve muscle weakness as well as loss of muscle mass.

Here is a list of diseases which can cause muscle weakness.

 

[Rlman]

Thanks so much @Hip, I really appreciate your help. So it seems my weakness is worse than most CFSers. I did an EMG which was normal, so i would think a myopathy would have been ruled out by that?

 

[Rlman]

interestingly, when the illness started, arms became weak but legs still had some strength to walk 15min per day. Then after the first year, legs lost their energy too. When i crash i have to lie in a fetal position, feels that i don't have enough energy to have arms,legs outstretched even when lying down resting. I wonder if that suggests overall low energy is cause of the arm/leg weakness as body energy shunted to core organs as survival mechanism?

 

[Hip]

Thanks so much @Hip. So it seems my weakness is worse than most CFSers. I did an EMG which was normal, so i would think a myopathy would have been ruled out by that?

Unfortunately I don't know enough about myopathies to answer that. I would not rule out ME/CFS as the cause of these muscle weaknesses you have; ME/CFS can sometimes results in things like temporary transient paralysis of muscles, which perhaps might be another explanation for your muscle weakness (ie, perhaps it is not your muscles that are weak, but an issue with the nerves that activate the muscles).

I know that when my ME/CFS was more severe, some years back, I could barely do 5 press-ups before my arms lost all strength, and I could not do any more. That was not PEM, but just some sort of lack of energy or weakness in the muscles. However, I never had any loss of muscle mass.

 

[Rlman]

I know that when my ME/CFS was more severe, some years back, I could barely do 5 press-ups before my arms lost all strength, and I could not do any more. That was not PEM, but just some sort of lack of energy or weakness in the muscles. However, I never had any loss of muscle mass.

yes that sounds more like what is going on with me-just much more severe! I have lost muscle mass with time, not initially, so i assume that is due to deconditioning. now even joints are feeling weaker and losing their strength. Thanks again for your help @Hip!

 

[Sushi]

) is the deterioration in points a,b,c due to muscle wasting/deconditioning? or is it due to loss of bone density? or due to flat feet and inappropriate insoles (though if so why would things get worse the past year if have flat feet for many years)? or is something else causing all of this?

-i have lost muscle the past few years for sure. and have weight loss

When we are sedentary we are likely to have some bone loss but what you describe sounds more like a muscle probem and it does sound more severe than most, though there are the "25%" who are very debilitated.

I spend much of my day bedbound on the softest memory foam bed I could find, but I still need to turn occasionally to relieve pressure on certain points of my body that have little padding.

I too have lost weight though not as much--but enough that unpadded furniture in uncomfortable. You might also check to see if you (Riman) fit the fibromyaligia diagnostic criteria. In the early part of my illness I also had fibro and had to use an egg-carton foam mattress. Don't ask me how I got over the fibro because I don't know--it disappeared when I was being treated by an autonomic specialist.

I am doing a "light" pilates class to try to offset muscle loss as I've found that my muscle loss affects not only daily life but balance. I usually "pay" the day after the class but I feel it is worth it.

I wonder if that suggests overall low energy is cause of the arm/leg weakness as body energy shunted to core organs as survival mechanism?

That is one theory that is being investigated--in layman's terms, we are sort of hibernating.

 

[Gingergrrl]

@Hip, @Gingergrrl, @Sushi do any of you experienced forum members have any input by any chance? thanks for all you do on this forum!

@Rlman You are so sweet to thank me but I have no formal role on this forum (except posting birthday threads )! What you described is mostly different than what I experienced but I quoted a few things from your post where we are similar.

i eat with plastic cutlery bc arms are too weak to hold metal cutlery.

I had also reached a point (in 2015 and early 2016) where my arms were so weak that I could not use metal cutlery and could not even lift a normal glass and had to move my head forward and use a straw. I ended up buying these super light weight plastic glasses b/c they were all that I could lift. My entire upper body (arms, lungs, diaphragm, neck, etc) became incredibly weak. It was progressive and constant (in my case) until I began high dose IVIG.

i sit when i take a shower.

I sit on a shower chair when I take a shower b/c I have POTS. Even though I currently have no symptoms of POTS, I plan to use the shower chair for the rest of my life b/c standing in the shower with the hot water could trigger a POTS episode and I am not willing to take the risk. Do you have POTS or orthostatic intolerance?

Just want to update that my legs were too weak to be dangling from the chair

I also cannot sit for too long with my legs dangling (this has actually been life-long) and I think it is b/c of dysautonomia (even before I officially developed POTS post-virus in Jan 2013). I have to sit cross-legged (often called "Indian style") and I do this at my desk, at my dining table, and even in restaurants if in a booth where no one can see. I also do it when I am the passenger in a long car ride (but obviously not when I am driving). I believe it relates to blood pooling in the feet but am sure there are other reasons.

I was curious if you have been tested for myasthenia gravis or LEMS (in addition to the myopathies like polymyositis that Hip mentioned)? Is your breathing or lung capacity affected like mine was prior to treatment?

 

[Rlman]

@Rlman

Do you have POTS or orthostatic intolerance?

I don't know for sure as i have not done a tilt table test. i am too weak to stand for more than a few seconds starting 2nd year of illness so can't do at home test either. but i can sit at desk for hours when on computer if leaning on desk. my BP is borderline low at home 90/60s or high 80s /high50s. the first year of llness when could walk got strong/faster heartbeat after 15 min walking which might have been pots.

I also cannot sit for too long with my legs dangling (this has actually been life-long) and I think it is b/c of dysautonomia (even before I officially developed POTS post-virus in Jan 2013). I have to sit cross-legged (often called "Indian style") and I do this at my desk, at my dining table, and even in restaurants if in a booth where no one can see. I also do it when I am the passenger in a long car ride (but obviously not when I am driving). I believe it relates to blood pooling in the feet but am sure there are other reasons.

I actually don't have enough energy to sit cross-legged, if i try i can feel i am losing energy and its stressful for body, feels like more muscle being used than when just letting legs hang down with feet resting on something.

I was curious if you have been tested for myasthenia gravis or LEMS (in addition to the myopathies like polymyositis that Hip mentioned)? Is your breathing or lung capacity affected like mine was prior to treatment?

I have not tested for those conditions. a few months ago i sensed my chest feels lighter when i breathe, as if i lost weight in chest. i was thinking that is due to loss of muscle in lungs or diaphragm? i can inhale a normal amount of air i think, though i think breathing is more rapid now. a few months ago my breathing felt more laborious too, as if body does not have enough energy for breathing, though that is better now.

Thanks for your help @Gingergrrl and @Sushi !

 

[Tammy]

I had significant/severe muscle weakness years back. I still have muscle weakness but nothing like I used to. I went to 6-7 different neurologists because of this and some other really weird symptoms...........nothing ever showed up as abnormal.

 

[Gingergrrl]

I don't know for sure as i have not done a tilt table test.

It might be worth it get a TTT to rule in or out POTS (if it is possible to be referred for one by your doctor which I know can be challenging).

but i can sit at desk for hours when on computer if leaning on desk. my BP is borderline low at home 90/60s or high 80s /high50s.

I was very similar to you and have never had problems sitting (at desk, table, etc) and my BP ran around 80/50 for several years. It still runs chronically low but is usually around 100/70 now.

I actually don't have enough energy to sit cross-legged, if i try i can feel i am losing energy and its stressful for body, feels like more muscle being used than when just letting legs hang down with feet resting on something.

I've never felt that I could not produce energy (which is one of the main differences between me and most on PR) but there are certain positional changes that could instantly trigger a POTS episode (and at it's worst in this included gasping for air and chest pain). This no longer happens to me and I can pretty much stand/walk unlimited now but I still make certain modifications like using a shower chair, sitting cross-legged, not bending down to the floor from a standing position (if I can avoid it), etc.

i can inhale a normal amount of air i think, though i think breathing is more rapid now. a few months ago my breathing felt more laborious too, as if body does not have enough energy for breathing, though that is better now.

We are different here, too, and prior to IVIG & Rituximab (the treatments that worked in my case for autoimmunity), I was incapable of inhaling a full breath- both in daily life and on spirometry (breathing tests). I could only inhale to about my shoulders and not to my diaphragm. It was completely debilitating and my worst symptom for several years but is gone now. My doctor feels is was due to a combination of POTS and (autoimmune driven) muscle weakness. I had added shortness of breath from allergic reactions (in 2015) but this was a totally separate third issue.

I'm not sure if any of this is helpful and hoping you figure it out @Rlman. It took me several years to even remotely figure out what was going on in my case.