Question for Quix prompted by former response.....
A little while back Quix asked someone if they were actually weak or just had the feeling of being weak. I'm interested in what could cause just the sensation of weakness. I often feel weak (especially in the legs) and like I am fighting to maintain balance but when the docs test for strength they seem satisfied. This isn't the dreaded somatization is it?
I've been trying to build my endurance as I walk the dog every day. It's been over five months and I just don't seem to be able to increase my stamina. Before I hit a mile I'm usually widening my base and weaving down the sidewalk.
Sometimes after a shower I have to support the elbow of the arm that is brushing my teeth with my other hand. I can do a flight of stairs but my legs feel like rubber by the time I reach the top. Sometimes my knees feel like they will buckle but haven't yet. And I've gone to rocker sole shoes so I'll trip less often.
So why do my limbs give up so quickly? Is it significant to test sustained strength as well as initial resistance?
I would be interested in this too, I also have similar issues although I cannot walk more than around 200 metres these days before the legs start to give up and I feel as though I am on a downward spiral with this. I am in pain as soon as I stand!!
My neuro-PT's explaination was that those with MS have muscles that tire much more quickly than those who don't have MS. Her advice to me was to push only a little as I try to build strength.
My exam reveals only a weak left hip and very strong ankles and yet my thighs want to give in quuickly and some days it is hard just to hold myself up. My description to her was that I feel as though I am far too heavy for my own legs - which of course I am not!
So I think what I am trying to say is that even when strength seems fine endurance is something we do not always have.
Not sure if this helps I am sure others have much better info than I.
me to it doest make sence. even a few years ago could work out strong as i ever was. but it doesnt matter seems like no matter- how strong i was- id have 2 sit down- or fall !! over nothing- no matter how stong i was-
is it just a part of ms that we just have 2 deal with cause it wont go away just -over years- gets worse? hugs tick
I have not been diagnosed but I have these same issues. I have good initial strenght but I weaken very quickly. When at my office visits with my neurologist I try telling him this but it seems as if he blows me off and than tells me see you in 6 months. I have been trying to look elsewhere for a new neuro as of late. I just don't think he is giving me the proper time or care, maybe its just me. Happy Thanksgiving!
Mary - Sometimes I get a "jello-like feeling in a muscle, but the muscle still does pretty much everything I want it to. We have had people come here and state that their muscles "feel weak" but they can still run as far, or climb as many stairs etc. So that shows that the feeling "can" be separate from true weakness. What you all are mostly describing is early fatiguability. This says that the nerves to the affected muscles are being damaged by the MS.
Remember the site of damage is not the muscles themselves. The muscles are fine - in the beginning. It is the myelinated motor nerves that have been attacked somewhere in the central nervous system. A nerve with damaged myelin can't conduct the nerve signal as efficiently as a healthy nerve. If most of the signal is arriving, but it is delayed, the muscle may feel normal initially. But then with repeated firing the nerve signal gets weaker and weaker and the muscle doesn't get the full signal to contract. So it can do it's full share. We perceive this as weakness, even though the problem is in the signal "to" the muscle and not "in" the muslce itself.
We can't depend just on the neurologist to check our muscles for strength. The exam they do checks grossly for "good" strength. And they check us just a one point in time. Some recent studies have been admonishing the doctors to listen better to our complaints of getting worse. WE know what we can do and whathappens to us better than they can test for.
So, if it feels like our legs are weaker - let's check it out. For me, it is nest to impossible to lift my right knee as I walk. Initially, I couldn't lift it up to my waist like I could the other leg. But, I could climb stairs - without much problem. However, over several months I noticed first that my right toes started to drag on the stairs and make a mark in the nap of the carpet as I went up. Finally after a few years I could lift my foot to the next stair only by a process of turning my knee inward and swinging it over to kind of throw my foot up onto the step. Then, I move it in place with my hand.
Now, I can manage this weird way of getting the foot up only in the morning, by midafternoon I cannot get the foot up onto the step at all.
If our arm feels weak to lift it up, then we can report that we can't hold it over our head. Or maying we can begin to brush or blow-dry our hair, but can't sustain the position. That is the case with my right deltoid. It fatigues very quickly, and I do most work with my left now.
If we go to the gym we can actually see a decrease in the strength - and measure it.
So, we need to report what we have lost or what we now cannot do to our neuros. If they test us and tell us we are normal, we MUST protest and tell them that we might be good for one or two uses (like their exam) but the muscle begins to fail as we do more.
This might be expressed in a decreasing distance that we walk, or a ever-slowing pace. We can time how long our usual walks last now and before.
Pat - your are absolutely right that we can separate strength from endurance. The many cause of fatigue fight us in all of our muscles, while we may have true weakness in this and that muscle.
Tick - You are right. No matter how strong we were - even if we were extraordinarily strong, if the signal can't reach the muscle in full power then the muscle CAN NOT contract. Think about the person that is an athlete that has a spine injury. The muscles are just a fit as they always were, but if the signal can't reach them (because of the spine injury) those muscles just sit there all floppy and useless. In MS The problem is the poor nerve signal, not a disease in the muscles. Yes, this often increasing weakness is part of the disease we live with. Exercise is only as good as the signal is that tells the muscle to contract.
Dalle - I don't remember meeting you! A belated welcome! You are describing the kind of uncaring and dismissive neuro that we all need to dump. You doc should be intensely interested not only in what you tell he, but in examing you for signs of problems or deterioration. My neuro (who just left) did a full neuro exam on me EVERY visit. He examined 18 pairs of muscle groups at each visit and compared them to his prior notes. So when my right hip flexors and right deltoid weakened over time he could see it. Sometimes he would say that the exam was stable, but he would note that I said it was fatigueing earlier.
Debs - You are feeling some of the systemic fatigue that MS is so notorious for. I also know that sense of feeling like I had just run a marathon - as if..., but still, it can be overwhelming. That fatigue is a different kind on top of any localized weakness.
Can so relate to this.... Thanks Quix for all your insight on this topic. I thought dealing with my leg weakness and heaviness was alot but combine this with spasms and now hand and arm weakness I'm just a bowl of jello who just ran a marathon too!!!
Wow, alot of us share the same feelings. My first explanation to a dr about my legs was exactly that saying I feel like I ran a marathon.. that's what came to my mind first. So weird..
Oh, yes, even if our docs say that "all is normal" which would be ridiculous, we can and should all ask for a Physical Therapy evaluation and treatment if appropriate. The PTs will quickly see the problems and can report back to the neurologist. Then it is on paper and part of our record.
I demanded PT. I went through the whole realm of tests for weakness only to show I was just fine. Oh and I walked about 3 paces for my Neuro in his tiny room which of course looked great. I put my foot down and told him that it is over time that I lose my strength. He actually said that I am talking about muscle fatigue then and not weakness.
PT is HARD and I am in pain alot even after just a minimal amount of stretching and exercise but I know it is good to keep the strenght I can keep.
Quix, thank you so much to responding to my post! You are of such great help. I am dumping my neuro and moving on, I have narrowed it down to specific neuro and I will be contacting them this week. Thanks for the welcome! You are so kind.
Thanks to all of you for sharing your own experiences. It has really helped me to see what I'm dealing with. It also is a great help in preparing for my second opinion appointment with a MS specialist.
A special thank you to you Quix. I understand what you were saying now. Perceived weakness seems more like what happens when my blood sugar drops. When it starts, I feel like I'm trembling and weak. It's something I can feel even though people can't see it. It does cause minor problems with coordination but I don't really lose any strength.
Starting now, I will stand up for myself and refuse to allow doctors to dismiss my reality. I will, I will, I will........
.....and I forgot that I wanted to tip my hat to all of you for pressing forward despite whatever MS is trying to steal away. You are my heros.
Although I've had a noticable physical decline over the past year, I realize that I am very fortunate to still be able to work part-time and limit my activities rather than eliminate them altogether. This is the perfect day to give thanks.
Thanks for sharing this Addi. I'm so glad this is already done and I don't need to think about it. I just know I would have had to say yes to Lulu.
I can't take the credit for all the work on that HP. Heck, I can't take credit for ANY of it beyond asking a question once upon a time. My mind isn't 100% but it sure would remember doing all the work to put that HP together. I bet Shell (sllowe) did it for us. Thanks :)
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