Musings on Pain and Fasciculations

KevinM

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Hello to all my brothers and sisters. A cloudy afternoon, so a good time to ruminate on some issues that have been rattling around for a while. I have been wanting to post my thoughts on these two issues for some time, because I believe that they are often dismissed or minimized in ALS literature. My comments derive not just for this forum, but from many other medical journal articles, other forums, and personal experiences of many PALS that I read about or with whom I have communicated.

I hope (and eagerly anticipate) a healthy give and take here about my observations. Mature dialogue and counter arguments are the cornerstone of knowledge, so I’m looking forward to everyone’s thoughts.

Let me also reassure all the DIHALS posters that theresponses you receive from our forum moderators or other members on these topics accurately describes the exceedingly low likelihood that any of you have ALS, so please don’t freak out after reading this post. These are only my observations.

Let’s start with pain. Pain is quite complicated, because what might be very painful to me might be tolerable to someone else, and hardly worth mentioning. Pull up virtually any generic article about ALS on the web, however, and it will indicate that ALS is not usually painful. If there is pain the articles say that it usually occurs in the later stages from immobility or from secondary problems such as contracture, bed sores, etc.

I find this to be a very broad generalization, and there are many, many PALS that describe pain in the early stages, and often prior to diagnosis. However, even this is a bit tricky, because I suspect that much of the medical literature Is differentiating between “primary pain” and “secondary pain.” Motor neuron death (primary) is not in itself painful, whereas cramping and muscle pain (secondary) is very painful. I can provide a very lengthy list of PALS that describe their initial symptoms being accompanied by pain (“my first symptom was pain in my right hand after bowling with my daughter,” or “my hands painfully cramped” after writing or performing surgery, as examples). Also, look no further than recent posts here from PALS that have experienced pain at the outset or soon thereafter.

Does that mean that every persistent ache, pain, or cramp is a possible precursor to an ALS diagnosis? Of course not, but it is incorrect to presume that pain is not present for a significant group of PALS, even in the early stages. Personally, I am still in what the literature describes as early stage ALS, but I have increasing, constant aching (pain to me) throughout my shoulders, neck, and lower back, and hip. This is not from immobility, but counterintuitively, because I still have mobility. The use of weakening muscles creates the pain.

As my muscles slowly weaken, certain activities and motions with my shoulders or right leg causes immense short term pain that gradually subsides if I don’t repeat that motion, but it is still very painful and it never totally resolves. For me and many others, pain is a very real symptom of ALS, well before the immobility stage. Of course, there are many PALS that never experience pain of any degree; parts of their body just stops working the way it always has.

BOTTOM LINE: Pain is a very real component of the disease for a significant number of PALS, well before the loss of mobility.

Now to fasciculations, certainly at the top of DIHALS concerns. Let me assure all you young twitchers that the sticky posted on this forum is absolutely correct, with only minor modifications that I think should be incorporated, ALS is rare (exceedingly rare in those under 30), and twitching is very common, non specific, and in the vast majority of cases due to a myriad number of other, treatable causes. Twitching alone is not a basis for an ALS diagnosis without an accompanying EMG, bloodwork, MRIs, and clinical exams that that detect weakness in one or more muscles.

Benign fasciculation syndrome, which is often diagnosed absent other positive tests, is probably the correct call for anyone under age 40, especially if there is a prior history of twitching. DIHALS under age 40 experiencing fasciculations, whether intermittent or constant, can probably sleep well at night knowing you don’t have ALS. There are always rare exceptions, but odds are HEAVILY in your favor it is not motor neuron disease.

But here is the caveat. At least two peer reviewed medical articles raised a red flag if a patient, almost always between age 50-60, suddenly develop “florid” fasciculations with no prior history. The articles indicated that in a number of these cases, fasciculations were the first symptom, preceding by months or even years weakness and atrophy. And the number of PALS-especially in that age group—that reported fasciculations as their first symptom is extensive.

In my case, I developed full body twitching several months before any clinical weakness was identified, after two separate neurological strength tests that showed normal strength and two abnormal but inconclusive EMGS. It wasn’t until five months after I started twitching that a clinical exam showed tricep weakness (of which I was not aware).

The point here is that most all fasciculations are indeed benign as described in this forums sticky posts, But if you are over 45 and suddenly develop them, pay attention and don’t procrastinate obtaining additional tests.

Ok, it is approaching nap time, so enough for now. I wanted to stimulate thought, conversation, and personal experiences. That is what this forum does best, Kevin
 

KimT

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Kevin,

For 59 years, I never had ONE twitch, not even in my eye where many people get them as a result of eye strain. I also developed twitching (along with left foot cramping, not much but still there) long before I showed any weakness. The fasciculations were only on the bottom of my left foot for about three months. Then they went to the calf in my left leg. After about 9 months, they were in both legs. Now they are everywhere. My legs twitch constantly. The muscles in my face twitch off and on. My left eye is twitching right now. Again, I never had fasciculations before and I was an athlete who sometimes pushed my muscles to the limit.

Regarding the pain. An MRI recently showed I have nerve root inflammation. Sometimes this can be caused by an autoimmune disease BUT it is also found in some people with ALS. Verified by both Johns Hopkins and Mayo Clinic.

I was diagnosed in 2015. At diagnosis I had little or no pain. Most of the pain I had came from a torn rotator cuff and a herniation at c5/c6. I could still walk several miles and continued to do so to reduce stress. In January 2016, three of my nieces visited. We played a lot of cards and games and I was reaching over the table. I developed lower back pain. It felt like a repetitive stress injury but it kept getting worse. I bought a lift chair and my pain management neurologist gave me an Rx for Oxy that eventually broke the pain cycle. But my back still has pain and sometimes it's very bad. I fell in September 2016 and sprained my ankle on my "good" leg. It was a bad sprain and I had to get xrays to make sure it wasn't broken. I walked with a limp for over a year and my stress-relieving walking came to an end. In 2018 I began walking for 10 minutes on a treadmill in the condo gym. It went well but I couldn't get my heart rate up so I started using the incline. It worked for my heart rate but not for my right knee. Again, I was limping from pain and my knee started to contract. ALS doctor ordered PT and it helped. Floating in the pool helped more. I can't swim because of the back pain. When I try, my back puts me in bed or back on Oxy.

My conclusion is that pain arises from weakened muscles but they can still test "normal" on clinical exams. Although my grip strength tests normal, it is much less than it was before. It is also more awkward, especially the fine motor skills.

I think these two factors might be more apparent with slow progression. When I sprained my ankle and was stuck in the lift chair for most of the day, my back pain lessened significantly. It was still there but I was able to stop all pain meds.

Both Mayo and Johns Hopkins told me that people with ALS present with pain and other sensory issues. That's why it's so hard to diagnose. Pain and sensory issues may point away from ALS in most of the population but not in many of the PALS I interviewed for my paper and subsequent book. Go to ALSTDI forum, Patients Like Me, or one of the many FB Groups and you will always see discussions about pain.

I agree that some are more sensitive to pain than others. I even thought that I had fibromyalgia as well as ALS or central pain syndrome. Who knows if there is a connection or even a correlation. All I know is that pain has lessened my quality of life.

I had such a high tolerance for pain, I didn't need anything to get a tooth filled. My mother was the same way. Now I need numbing just to get my teeth cleaned and I have no gum recession or other issues to explain it.

Before you came here we had a guy who was respiratory onset. He often complained about severe foot pain. We corresponded off the forum for a couple of months because he noticed I had a lot of pain. He could still walk but it hurt so much he just stopped. Another woman from my home town was diagnosed about three years ago. We connected shortly after her diagnosis. She asked me if I had pain. Come to find out she had horrible pain in her foot prior to having foot drop. Nobody could figure it out. Then she was diagnosed at MGH.

One of the first people I met at our local chapter's support group was a crusty old guy who said pain was his major symptom, even four years into diagnosis. He used a cane. Very slow progression but he was up at night with pain.

So, yes. I share your opinion because I live it.
 

KevinM

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Thanks so much for describing your experiences, Kim. I do think that I bring on a good amount of my muscle and joint pain/discomfort myself, mostly from stubbornness.

I try to do the activities I’ve done my entire life, which stresses the weakened muscles. However, I’m not going to stop moving until the disease progresses to that point, so i will live with the constant aching (as long as I have decent pain meds for the bad days). Kevin
 

KimT

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I feel the same way, Kevin. I went for a short walk today because it was in the 70s and the sunshine beckoned me! At about 1/3 mile, my foot started hurting. I came home, stretched, then iced it. The mood lift benefit outweighs the pain, for me.

I think people who were into competitive sports might have a harder time accepting the lifestyle that ALS puts on us. Each day I watch dozens of golfers from my office window. Most are in their 60s, 70s, and 80s and live here. It's a short course and I might be able to make it around but my back and shoulder couldn't take the swing. Too bad because I had an awesome short game. One of the things I did after my diagnosis was throw away all my trophies. It was like rubbing salt in the would.
 

KevinM

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I can so relate. I was a solid 5.0 tennis player for many years. My shoulders just couldn’t handle it now, much less that level of play.

One positive. I was also a professional acoustic guitarist for many years that played really complex finger style work. Although the super difficult stuff is now out of reach, I did manage to play a couple of old Leo Kottke songs today before my hands got tired. Still have good dexterity, just not the duration. Still, it lifted my spirits to know I can still play in short bursts. K
 

KimT

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Do you have anything on YouTube so I can listen? I love listening to acoustic guitar. There's a guy in the condo I met in the pool. He plays guitar and mixes it. He uploads it to YouTube and sends me a link.
 

KevinM

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I don’t, Kim. I was a full time musician for about ten years in the 70’s and 80’s, then played periodically around here at restaurants and bars until I was diagnosed. Also travelled a few times to give fingerstyle workshops in the southeast. I never cared about recording and am a perfectionist when it comes to sound quality, and I no longer have any good recording equipment.

If you like amazing, beautiful instrumental guitar, I suggest you check out the remarkable Tommy Emmanuel, an Aussie that is considered by most serious players to be one of the worlds greatest. Chet Atkins once called him the greatest fingerpicker on the planet, and Chet would know.

His version of “Somewhere Over the Rainbow,” in which he uses harmonics to create an amazing harp sound, chokes me up every time I hear it. When my time comes, I’ve asked my wife to play his version. If he ever comes in concert near you (after COVID) see him. It is an experience you will never forget. Other world class acoustic guitarists I love include Alex deGrassi, the great German guitarist Peter Finger, and Don Ross.

If you like singer/songwriters, one of my favorite musicians that everyone in the industry holds in awe but who is not well known to the public is Darrell Scott. He is a virtuoso on about five different instruments, and he has written many songs other people made famous. Check out his solo acoustic versions of his songs “River Take Me” and “You’ll Never Leave Harlan Alive.” I want to break down in tears every time I hear him sing.

I hope you enjoy these great musicians as much as I do. Kevin
 

KevinM

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Oh, and add Tony McManus, considered by many to be the greatest Celtic solo acoustic guitarist in the world. Simply brilliant...
 

frankb

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super thanks, kevin, for listing the great artists. listening to tommy playing over the rainbow right now! ! wonderful!
 

KevinM

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So glad you’re checking them out, Frank. Tommy is truly jaw dropping. That harp sound he creates, which is REALLY hard to to do, especially that fast, is called cascading harmonics. That technique was basically created by the legendary jazz guitarist Lenny Breau in the 1960s, but Tommy has taken it to a whole new level.

The others are equal special in their own way. Best, Kevin
 

KimT

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I've heard some of Tommy's work. He is amazing.

Thank you for all the other recommendations. I'll check them out. When I'm sad, music is my therapy.
 

KevinM

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Me too, Kim. I spent so many years working to become a master level player, and I am at once proud and sad when I listen to these amazing, for the most part unknown, world class players. Proud because at one time I could play a number of these ridiculously complex and beautiful songs (not their most difficult work—only they can do those the right way) and sad because many of them are just too fast for me now.

For absolutely breathtaking speed, precision, melody, and the ridiculous ability to weave jazz, classical, blues, and gypsy styles into one composition, check out Peter Fingers “Getaway,” “Niemansland,” or “Viva la Vie.” Or Tommy’s “Tall Fiddler” for mind blowing bluegrass speed. Too amazing for words. And the pure joy he gets from playing oozes from every pore.

And pull up the Music Fog YouTube video of Darrell Scott on solo guitar singing “River Take Me.” One of the most soulful voices around, and a perfect fit for his music. Very emotional stuff, indeed. And very far off the well worn path of “popular” music.
 
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EricInLA

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Hey Kevin - You started this as a "pain and fasciculation" thread but now you are firmly in the musical category. :ROFLMAO: Well I've already related my thoughts on pain. I had more mental than physical pain when this fakakta (a yiddish word) disease made its presence known in me. Then I went on my SSRI and the mental pain subsided. I still get physical pain occasionally but much less than what you report. I am stubborn just like you and Kim and will continue to do fun activities despite the ramifications on my weakened arm/hand muscles. I'll have plenty of time to read and do sedentary things when my limbs stop working, whenever that is! I embrace, with gusto, Kim's sentiment that "the mood lift benefit outweighs the pain". There are some white flags I've had to raise though, such as basketball and long distance bike riding. The latter is just too much for my arms to take, though I've replaced that activity with roller blading along the beach path which releases similar endorphins for me.

I have more to say about fasciculations. I take issue with the knee-jerk response (I know, that's an ugly metaphor for our particular disease!) often given on the DIHALS posts that people who are experiencing fasciculations without "failure" or weakness or atrophy shouldn't be concerned or are "in the wrong place". Usually, yes, but not necessarily. As I've said in other threads here, fasciculations were my sole presenting symptom. Upon seeing my twitching - and based on nothing else - my PCP sent me directly to a neurologist for further testing. Then my neurologist found no weakness on exam, and no atrophy. Just nonstop twitching, which is why he set up my EMG, which was abnormal. After I continued along with no "failure" for over a year after that, I was dismissed on these pages. I wish our standard response to concerned folks could be more nuanced, along the lines of what you say with respect to likelihood based on age, degree of twitching, etc.. When folks come back with a normal EMG - which is the gold standard for determining ALS - then I agree they are in the wrong place. But until then, I think we should be less dismissive. I guess I'm saying that I feel the same way about fasciculations as you do about pain.

It's funny you mention "florid" fasciculations. I remember seeing, and then obsessing over, that word back in 2018. I would be awake at night wondering if my intense, nonstop fasciculations met the definition of "florid". Interestingly, when I tried to look up that word, Google defaulted to your fair state of "Florida". :LOL: At some point I came to the realization that "florid" fasciculations were exactly what I had, no matter how much I tried to convince myself that I was in a gray area. And then weakness, atrophy, and "failing" came later.
 

KevinM

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Yes, I did hijack the original post a bit, didn’t I? Music is so much more fun to talk about than pain and twitching!

We are certainly on the same page re: fasciculations. I do think that those under age forty with fasciculations are probably much less likely to have them as a result of MND, with numerous exceptions that I know about. I (gently) tried to suggest to our readers that if you are over 45, and certainly over 50, with no prior history of them, that they should not be dismissed as “meaningless,” even without accompanying symptoms.

I was exactly like you, in that my fasciculations were the reason my PCP referred me to my first neurologist, after all bloodwork came back normal. I too, had no weakness or atrophy at that stage, and had two separate clinical strength tests that showed normal (actually above normal) strength. However, when my first EMG came back abnormal but not indicative of a clear ALS signal, I was referred (at my request) to the second neurologist/ALS specialist.

Again, his EMG was abnormal but did not point directly to ALS, but he detected tricep weakness in my right (dominant) arm. At that point, he still said he wasn’t totally convinced it was ALS. Less than two months after that visit, though, I felt increasing weakness, which he confirmed through another clinical exam, at which time he said I was “clinically probable,” started me on Riluzole, and gave me the paperwork for Medicare and SSDI.

So I’m with you On this, but at the same time I understand that the moderators here have a responsibility to correctly point our to DIHALS the many other reasons for twitching. Most of these fearful posters are in their 20-30’s, so the odds are very heavily in their favor that it is benign and treatable. That’s why I thought it might be helpful to perhaps add a line to the sticky posts that allude to the age factors I’ve discussed.

Thanks for the very good reply, Eric. I know this had been something you wanted to discuss in more detail for some time. Glad you did it. K
 

Nikki J

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I went back and read your first threads Eric. You first posted after an emg that you said showed ulnar neuropathy and also a radiculopathy you were worried about continued hand symptoms. You then reported back that the doctor you saw said not ALS. The responses you got were not really related to fasciculations but to your reported emg and Mri Neither of which sounded suspicious.

people are told if they are worried see a doctor but it is a fact that the vast majority of twitching is benign and I do not think most twitchers need emgs. Older people and especially males it is not unreasonable but the 20 somethings? Wasting scarce resources
 
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