How can you tell if muscle weakness is normal?

[Jirel]

I'm trying to decide how to tell if muscle weakness in my legs is normal or not. The doctors can't really tell if I can't (I don't think). I mentioned that I was feeling weak but added the fact that I think it might be because I'm not on my feet enough. But now I'm wondering. The thing is, I'm finding that I FEEL like I'm loosing my ability to walk. Now, I have major back problems that curtail my ability to take long walks or even stand for very long. So I'm not up walking around much but, I go to work 3 days a week. I walk about 3 - 4 mins at least once each day as well as a 2 - 3 min walk to and from the parking lot. (Once I wouldn't have called that anything.)

But some mornings I get down the stairs from getting up, taking my shower, getting dressed and feeding the cats and my legs feel like they are wobbling and I feel like I have to sit down. And I don't feel like I can walk up the stairs any more without holding on to the hand rail so I can pull myself up. Souldn't I still be able to do these 'normal' tasks? Would I really lose these abilities because I'm not walking around as much as I used to or is the answer just trying to do some exercises?

I tried to push myself some last week - mostly in terms of keeping the house cleaner and doing some organizing. Which was fine but made me shakier and weaker towards the end of the week. Is that a good or bad sign? Any ideas? I don't like to bring too much 'to the table' when I talk to the doctor because I feel that if I overwhelm him/her with information than the important stuff (like the tremor that is sending me to the neuro in 6 weeks) might get overlooked. But is this important? Or just something were I need to buckle down and work harder?

Any opinons or suggestions are really, really welcome.

edit - this has kind of come up gradually but more in the past 3 months. My activity level has been decreasing for the last 5 years as that's when my back went but I've only felt like I'm having muscle weakness in the last 2 or so months.

[crm1209]

I think this sounds important enough to mention to the Dr. My understanding is that if you are experiencig a new symptom or a change in an existing symptom, then it's worth mentioning. There are a number of reasons why you might experience increasing muscle weakness in your legs -- some that are lupus-related and some that are not. So, if I were in your shoes, I'd get it checked out.

By the way, I have had similar experiences. I was very frightened the first time it happened because I thought I was going to end up losing the ability to walk. I had painless muscle weakness and shakiness if I walked very far at all. It turned out that it's just part of my own little lupus signature.

Good luck,

Renee

[Raglet]

Hi there

There are nerve and muscles studies which can be done to test muscles (mine showed sensori motor axonal neuropathy, and axonal loss in the muscles), so it is possible to test muscles. But it also sounds like you are not doing much in the way of exercise, which is understandable with lupus, but that can also be a killer in terms of muscle strength.

Also, I am wondering if you are on prednisone. Prednisone can do hideous things for muscle strength, particularly in the legs.

It is important that you mention this to your doctor, and also your neuro. They can test your legs (both by examination and by sending you for tests). As you are not getting much exercise, it may be that it is lack of exercise that is doing it, but it's not really possible to say. With the weakness I have in my legs (feet and ankles) I have areas that are weak and other areas in my legs that are very strong as they have to work hard to compensate for the weak areas. So it is a real mix.

The main thing to do is to make sure you talk to both doctors, rheumie and neuro, to sort out what is going on. You may just need some physio (physical therapy if you are from the States) to sort out the weakness, if it is from under use. It's not really possible to say without having a doctor look at it.

Make this a priority to mention at the doctors - living with weak legs is no fun!

cheers

raglet

[sheila t]

I been told by my Rheum in Nov. My Muscle weakness and muscle loss on arms and legs is due to my long term on Pred, not saying this is your case, but well worth mentioning your muscle problems to the Rheum. It affects me just getting out of bed, before I even started my Day. I been like this for some years, it was only last year I decided to mention it, to my Rheum

Hugs to You
Sheila xox

[Raglet]

oh, just thought I'd mention, the funny thing about pred is that on one hand the prednisone makes me weak unless I exercise a lot, but tapering it makes me even weaker. So if I am decreasing my pred, I have to work really hard on maintaining leg strength as my body adjusts itself to the new dose. This can take quite a while.

Prednisone really is a very weird drug!

hth

raglet

[sheila t]

Raglet Prednisone really is a very weird drug I totally Agree.

They tryign to get me down slowly to 7mg and my muscle weakness is worse??? Think its my body trying to get used to a lower dose

P.S I BEEN LOWERED BY 1MG EVERY 8 WEEKS...

Sheila xxx

[ray4given]

I am fairly new (one year into disease) and haven't experienced all there is to know about this disease however when I read your post, I recognized a fairly new symptom for me. Just wanted to pass on what my dr said. My doctor mentioned that it was probably muscle inflammation which causes these exact symptoms. It can effect only certain muscles, not necessarily all over. I had it in my thighs of both legs and couldn't stand very long. They were shaky and felt like they wanted to give way under me if pushed very much. I, too, was wondering if it was inactivity and maybe my muscle was waisting away. I tried not to overdo it but made sure I kept moving some just in case. It finally went away but sometimes comes back if I have a "bad" few days. I think it could be part of my process. Obviously talk to your doctor but there are tests they can do to see if your muscle is atrophying or if maybe it is nerve related, etc. EMG's aren't fun but it might give you a piece of mind, too. I'm just giving my some time and trying to "diary" when they occur and to find a pattern. Good Luck.

[slimhobo]

hello-
Before I was diagnosed, I was very weak! :( Walking 10 steps pooped me out. It was a chore to do anything! Then, I noticed I was a little yellow, and, my urine was really dark orange/ice tea looking. I had hemolytic anemia. Distruction of red blood cells. That is what was causing my weakness. Unfortunetly, my dr. at the time treated me for only that, (he never mentioned Lupus as a cause:mad: ) for 2 years until I ended up in the hospital for 9 days that lead to the Lupus dx.
Check in with your doc. get some lab work done....
Good luck! Kim:)

[Raglet]

hi ray

you're definitely right that lupus can directly affect the muscles, and also spot on that it tends to be some muscles not others. I have nerve damage to the lower parts of my legs which give me a similar problem - muscles that don't do the job. With me, it isn't inflammation of the muscles, I have some axonal loss in my muscles and nerve damage which adds up to meaning that my muscles just don't get the right signals to be able to move. My toes haven't moved in many a year, and my ankles are pretty shot (partial foot drop on both sides). Unfortunately this is permanent for me, but I get by.

there are quite a few people on this board who have had problems with lupus affecting their muscles, you may want to post about it some time and link up with them

cheers

raglet

[MichelleAnn]

Have you had any muscle enzyme blood work done? My Creatine Kinase and C-reactive protein are high during a flareup with severe muscle weakness...my doctor said myositis, mild form is common in some with inflammation in the mucles due to lupus...if the CK and CRP is very high then it is likely not Lupus but possibly autoimmune myositis all together or another disease...Prednisone tapering can cause muscle pain and weakness, I am always worse when I am weaning like others here said...kind of makes you wonder which is worse, the flareups or the weaning of Prednisone...but the long term effects and more time bewteen flares is best if you take the prednisone...I use a walker during flareups, walking is difficult, I also wall walk. I like the walker to help me out of chairs and the sofa. I cant walk much and when I do, the pain is overwhelming in legs and wobbly legs, they also feel dead, I do fall sometimes.Take Care.
M

[sheila t]

Raglet I was at the foot specialist last week. they made special insoles for my shoes to make it more comfortable when I walk. they also told me that, my feet drop to one side, and thats why I don't walk flat on my feet, they also mention muscle loss. I never thought about the Pred affecting them. I had also been told that I have not much muscle left on the bottom of my soles, so the Insoles have extra padding. All permanently caused by pred. Pred does cause many problems long term. But God knows how My lupus would be without it.

Sheila xxx

[Raglet]

hi Shelia

pred certainly can cause lots of problems - with me it's definitely not pred, as only some of my muscles have been effected. This means that my feet, hands etc are sort of a bit bent and twisted, as the muscles that oppose the one's that don't work get all the say in terms of which direction my hands and feet move in. Which is rather annoying and all very pointless I think.

Has a neurologist seen your feet? Loosing all that muscle seems a little weird (said in the nicest possible way:lol: )

cheers

raglet

[sheila t]

Raglet about the Neuro YES! I am under one. As I got fluid on the braina few years back. Seems Pred affects some people more than others. I used to be on such high doese too. for long time as High as 60mg daily for months when first Dx. I have NEVER been off pred. they have tried but I end up so ill.

I also have alot of muscle weakness, as I went years before begining dx with B12 Deficiency, If Untreated, as it was in my case for years. it can cause

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:


Numbness and tingling in the hands and feet
Difficulty walking
Muscle weakness
Irritability
Memory loss
Dementia
Depression
Psychosishttp://www.intelihealth.com/IH/ihtIH/WSIHW000/14294/24009/232756.html?d=dmtHealthAZ

I am now on B12 injections and all it took was a simple blood TEST and a New G.P that listens.

Sheila xxx

[sheila t]

JUST A THOUGHT FOR THOSE SUFFERING MUSCLE WEAKNESS. IT WOULD BE WORTH ASKING TO HAVE YOUR B12 CHECKED.

SHEILA XXX