leg pain

[EricInLA]

This is sort of a lighting round question. Until a couple of months ago, my pain and weakness was limited to my upper right extremity (though I've had fasciculations everywhere for quite a while). In the last couple of months - basically since CoronaVirus - I've developed pain in my left leg. I really feel it after walking. I'm trying to figure out if this is from weakness (i.e. overworked muscles compensating for bad ones), or if this is spasticity. How does one tell? I'm not tripping over things and I don't think I have foot drop. I can still toe and heel walk. I do have hyperreflexive knees and ankles. Thoughts?

 

[KarenNWendyn]

You would have to be examined by a neurologist. Pain is generally not a presenting symptom of denervation. Pain can be associated with spasticity which is something the examiner finds on exam. Fasciculations are considered a lower motor neuron sign in persons with confirmed ALS, but the EMG would show denervation in a region with fasciculations in ALS. In someone without MND, fasciculations are meaningless and not associated with EMG changes.

I never had pain with denervation. I had failure: foot drop, inability to climb steps, inability to oppose my thumbs, etc. Now that I’m wheelchair dependent and largely immobile, I have pain because my muscles don’t support my joints.

I suspect your leg pain is due to something other than ALS.

 

[KevinM]

Hi Eric. I think we had both chimed in on the issue of pain, even in the early stages, in Kim’s thread “Pain and more pain.” As Karen described, pain is not usually associated with motor neuron death, but I, too, have experienced muscle and joint pain associated with muscle atrophy and compensation. No nerve pain, but pretty constant muscle aches.

Though most of my muscle aches are in my shoulders, arms and hands, I have also experienced mild right leg pain/discomfort after my morning walks. I attribute this to the atrophy of my butt muscles, and it has been transitory. If I limit my activities for a couple of days it subsides.

I, too, have begun to question whether some of my pain issues are due to the onset of mild spasticity. Since my symptoms began a year and a half ago, I have had exclusively LMN symptoms with fasciculations, gradual weakness, and atrophy. Recently, though, I believe there is now UMN involvement presenting as elbow, wrist, and finger stiffness and forearm and neck muscle tightness. I agree with Karen that an exam is necessary to confirm, but I have no interest in spending a full day going out of town to have my diagnosing neurologist Dr. Pulley say “yep, it’s spasticity,” especially with coronavirus exploding here in Florida.

Either way, muscle and joint pain, at least in my case, is attributable to my ALS even though I am still functional and have not progressed to the point of immobility, which as Karen says can cause significant pain.

 

[KarenNWendyn]

Recently, though, I believe there is now UMN involvement presenting as elbow, wrist, and finger stiffness and forearm and neck muscle tightness. I agree with Karen that an exam is necessary to confirm, but I have no interest in spending a full day going out of town to have my diagnosing neurologist Dr. Pulley say “yep, it’s spasticity,” especially with coronavirus exploding here in Florida.

Either way, muscle and joint pain, at least in my case, is attributable to my ALS even though I am still functional and have not progressed to the point of immobility, which as Karen says can cause significant pain.

Kevin, what if Dr. Pulley were to say “No, it’s not spasticity”?
You could be barking up the wrong tree. For example, what if there is a treatable inflammatory process in your joints? What if you have myofascial pain which has nothing at all to do with spasticity? Wouldn’t you like to know?

 

[KevinM]

I suppose those are all possible, Karen, though I’m playing the odds that these are ALS symptoms. The joint stiffness and muscle tightness is not systemic, but relegated to my arms and neck for the most part.

I have also perhaps given the wrong impression that my pain is significant and constant, which isn’t the case. Most days it’s just mild discomfort. Certainly nothing like what Kim is experiencing. When I do experience an uptick in pain/discomfort, it directly correlates to the level of exertion on any given day, and specific muscle groups. The less I do, the better I feel.

Good points, though. I have a teleconference appointment next Tuesday with Dr. Pulley, and will mention these possibilities and hear his thoughts.

 

[EricInLA]

Kevin - It seems that we have a lot of similarities with our disease course. You're describing the nature of my pain as well. I've also had tightness in my hand that ebbs and flows.

I do see Karen's point, but after so many doctor exams and tests, you start to have a solid hunch about what's going on, and you have to choose which things to go in to the doctor for. In my case it's easier because I have lots of experts very close to where I live, but CoronaVirus has also complicated that because many (like my doctor) don't want to do in-person consultations.

Thanks to both of you for the input.

 

[KarenNWendyn]

Kevin, you said, “I suppose those are all possible, Karen, though I’m playing the odds that these are ALS symptoms”. Actually the odds are that they are not ALS symptoms.

Anyway, best of luck to both of you guys in sorting out your symptoms.

 

[KevinM]

Thanks, Karen. I’ll report back after my virtual visit with Pulley. Whatever it is, it would be nice to have it go away! I just dread the idea of more tests...

One question: why is it that many articles about ALS symptoms, even in early stages, describes joint stiffness and tight muscles as pretty common, whether or not those symptoms are linked to pain?

 

[Nikki J]

Joint stiffness? Looking at alsa, mayo and webmd for early symptoms only the last mentioned stiffness and it was muscle stiffness. I think when people say muscle stiffness it is a poor description of spasticity

when I was in a presymptomatic genetic study one of the questions they asked was muscle stiffness. They specified NOT joint and admitted they were looking for spasticity.

joint stiffness in als makes no sense as an early sign given the pathological process. Once range of motion is decreased from weakness then you see contractures

 

[KevinM]

Fair enough. Maybe it’s just age and arthritis, although the muscle tightness in my forearms might be causing my wrists and fingers to feel stiff. Either way, it’s unpleasant. Sorry to cause a debate on my symptoms.

 

[KimT]

All I can say is that pre-ALS I had absolutely no joint issues and never had pain in my legs or back. The only pain I experienced pre-ALS was neck pain from an impinged nerve c5/c6. Now, my back and knees hurt in direct relationship to how much I use them. Today, the pool was beautiful. I straddle a pool noodle (tried many other devices and ways to exercise my arms) and just let my legs hang. I paddle my arms (I've been doing this for three years) and it really does a number on my lower and middle back. Also, when I walk, the knee pain depends on how far and how fast I walk.

I believe some of nerve pain, some muscle pain, and some joint pain. Mayo's specialists all have different opinions.

So......the decision was made for me to get an MRI with contrast on my lumbar spine. I don't like MRIs and I really don't like contrast but I'm doing it. If there was anything that could help this pain (I also have tingling in my legs) I'd do it.

The strange thing is that paddling the way I do in the pool gives me much better range of motion in my arms and doesn't aggravate my torn rotator cuff. My arms actually feel much better after the exercise.

Also, in 2018, when the right knee pain started, I thought it was from walking on the treadmill at an incline and that's probably what started it but the xray showed "perfect joints" and the injection they gave me did nothing after the lidocaine part wore off.

 

[KimT]

Eric & Kevin, Maybe we should start a club.

 

[Texas Quilter]

I have a lot of let pain. Mostly muscle aches. Sometimes in my neck, which is weak. I can still walk but if I walk more than 1500 steps a day I really pay for it with pain in my legs. I do think its exertion related and this pain has been going on since a couple of years after diagnosis. One neurologist says pain is not a symptom of ALS, but several at my clinic have said they have pain. My local neurologist agrees that although pain is not a symptom, its a "side effect" (my words here) so to speak.

 

[lisa g]

I experience pain on the side and in the creases behind my knees. For 2 months it was excruciating when I put any weight on my right leg. I would wrap it and apply heat and ice. I swore that I had a torn ACL or tendon. I didn't want to go to another doctor for fear of finding something else wrong with me.

I finally had to go to the orthopedic when it became unbearable. He took xrays and did manipulation. At the time I was walking unbalanced and had a bout of vertigo. I made the orthopedic aware of my diagnosis. He made me walk while he watched. Xray showed mild arthritis. His conclusion was when I walked I was overcompensating the leg inflaming the tendon. He put me on anti-inflammatory cream and told me to rest the leg. Then came the Corona virus. The only good thing that came out of that was it forced me to stay home. It took 2 months but has finally healed. Now it's just tightness in my calves and back upper thighs. My husband massages them every night and does ROM which helps.

 

[KimT]

Out of desperation I went on an anti-inflammatory diet two weeks ago. Certain foods do cause inflammation and, if you're sensitive to any given food, your body will react. I don't know if it will help with the pain I'm experiencing but I need to try. Tomorrow I will attempt to schedule the MRI. I don't want to wait much longer because Florida is getting hit with CV hard and I'm afraid they will stop all non-essential testing. The food I'm eating isn't much different than I was eating before except I cut out dairy.