Muscle pain as one of the initial symptoms

[Erica]

I know that some neuro/ALS specialists are saying that pain is not a part of ALS.
In my case, I have initial onset of pain in a certain group of muscle then weakness and atrophy.
Was wondering if anyone else has experienced pain as a part of the initial symptoms?
THX,Erica

[halfin]

Hi Erica - I have not had pain among my symptoms. Have your doctors looked into the possibility of multifocal neuropathy? This can manifest with both sensory problems such as pain and tingling, as well as muscle weakness. I don't know about atrophy particularly, but I suppose that if you don't use a muscle for a while because it is weak, then it would naturally experience atrophy due to disuse.

[indigosd]

Erica, my DH had incredibly painful charlie horses in his legs for about 2 years prior to his dx. I don't know if it was related or not. He does get spasms now on occasion [throat and hand] that are very painful.

[joelc]

I had painful charlie horses for almost 2 years prior to my diagnosis as well. But they are a thing of the past now. It seems like when the muscles are gone so is the pain. So enjoy the pain because when it stops you will not be walking! LOL

[Erica]

Thank you all for your reply...
Hal- my ALS diagnosis was confirmed at Hopkins.
It's just so strange that I have these pains: I wonder if they secondary to weakness in other muscles.

[tmasters]

Erica,

I had 2 types of muscle pain early on, well before diagnosis:

1. The "charlie horse" or cramping type that's already been mentioned.
2. I was a runner, and my legs would hurt all the time after running as though I was using muscles that I hadn't used for a long time. They call this DOMS (delayed onset muscle soreness). So it's normal to get DOMS when you do an unusual workout, but in my case I was just doing my normal routine.

Originally the docs thought it could be due to Crestor, a cholersterol-lowering medicine. But stopped that and it didn't help. This process delayed the diagnosis.

Hope this helps. What kind of muscle pains are you getting?

-Tom

[hopingforcure]

Since I am highly Upper motor neuron dominant I have a lot of pain.
I have stiffness till the cow's come home. I was a fitness teacher, and I had pain like I worked out for day's after my normal routine of classes. I had cramping, and charlie horses. I still have all of the above. I do think many of us have or have had some amount of pain I have talked to a fair share of people who did not have pain also.

[indigosd]

hmmmm...isn't this INTERESTING! I have never read anywhere that people had "charlie horses" 2 years prior and look, seems to be a commonality! My Husband was also a runner!

[Erica]

Tom-
I have a shoulder/ arm onset of ALS. In my case my first symptoms started a couple years ago with neck/upper back muscle tightness-pain, which was attributed to stress.
I had an almost 2 years of non stop PT, around March of this year I started having a lot of R shoulder pain referring down my arm. Noticedsome weakness and muscle atrophy.
After battery of various tests was diagnosed with ALS in August. In late August started with pain in L arm, and on neuro exam they already found weakness and atrophy. Now pain progressing to mid and lower back and left leg.
Neuro explained that there could a pain related to weakness in some muscle groups where other muscles have to take over and are overexorted.
My observation was that my pain comes before weakness and atrophy as a first sign.
Thank you all for your advice and concern.

[sandradenise]

I too have a lot of cramping. My feet and hands get contorted and my arms and legs knot up so bad. What is strange is my torso and backside also cramp. (and twitch). Have you ever had them so bad they bruise ?

[lydia]

I do not have an ALS dx and on most days when I don't let my imagination get the best of me, I believe I won't have an ALS dx in the future. However, Erica, Hoping, and Tmasters, I do experience what you describe. In particular, routine-for-me activities makes me feel as if I have done some laborious and out of the ordinary manual labor. Vacuuming a single room requires me to pay dearly for DAYS. Going up a flight of stairs more than 2 or 3 times usually requires me to forfeit the rest of the afternoon or evening. Even bending over is a no-no. I have found that in the past 2 years I have had to continually reduce the level of physical movement my body participates in, or suffer greatly. This is what led one doctor to suspect mitochondrial disease. I have also suffered from awful cramps, and in bizarre locations (butt cheek, upper left back, etc..)

Erica, Hoping and T, can you elaborate on when your EMGs were in relation to your pain experiences? I had a clean EMG a little over a year ago on left leg and arm (the only "finding" was decreased recruitment on every poke; I have been assured that doesn't mean anything-thank you Wright, but on bad days...well, you know...!)

Lydia

[holdingouthope]

Originally Posted by Erica

I know that some neuro/ALS specialists are saying that pain is not a part of ALS.
In my case, I have initial onset of pain in a certain group of muscle then weakness and atrophy.
Was wondering if anyone else has experienced pain as a part of the initial symptoms?
THX,Erica

My dads initial symptom was lower back pain. We all assumed he injuried his back as he gave up a 9-5 desk job (software engineer) to pursue his previous career in aircraft assembly (he wanted a union job with better retirement benefits). Anyway, we thought from going from a desk to more strenous activity, put him over the edge but come to find out that it was the start of his ALS symptoms. My best guess is that he was developing weakness, not enough for him to notice severe mobility loss or anything, but enough to cause his back discomfort from the loss of his core muscles.

He had seen a few docs, a chiro, a spine doc and they all said he had degenerative disc and some arthritis causing the pain. That was in June, then by July the weakness kicked in and very rapid, he went from holding on to things to move around the house/stores, to a cane, to 2 wheeled walker, and then very quickly to a 4 wheeled walker with a seat now (which he just got today and has been A HUGE relief). I fear we are going to need a power wheeled chair rather soon. The local ALS patient service coordinator has been a huge help (THANK YOU RENEE) and is working on finding a way to get the wheelchair soon (as we are waiting for medicare to kick in but might not be able to wait that long).

Anyway, so july weakness and by end of september, respiratory decline. It seems so rapid to me. I've heard of ppl starting off rapid and then slowing or leveling out and I just hope we are one of those cases although some days I fear we aren't

Renee, suggesting maybe a support group for me and I think i'm going to need a place to vent very soon. As you see, I hijacked this thread and could go on and on but I'll stop here and hope that I have some how answered your question through my babbling.

[olly]

those with umn disease like myself tend to have more pain from spasms.
with als i think it could be how much umn involvement there is,like hopingforcure is more umn dominant so gets more pain.

lydia,you are just like me. my son does the hoovering,i have moved to a ground floor home and i know what you mean about trying to bend over .
someone mentioned and i think its true,muscle soreness from doing everyday things is from weakness and the muscles having to work harder.

holdingouthope.
is that renee lowery from the alsa?
i really hope your dads symptoms start to plateau soon.

[holdingouthope]

Yes, I believe that is her last name How do you know her?

[Erica]

Holdingouthope, what was your dad EMG findings? Did he have any fasciculations in his back or limbs? Any visibly muscle atrophy?