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sdsyd

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Hi everyone.

I have noticed a lot of posts regarding pain and MND lately, lots of discussion and even some difference of opinion. I just wanted to mention a couple of things. As some of you know, I have worked in the rehab field for 10 years now and have worked "hands on"
with lots of conditions that affect muscle strength, so I thought maybe this post would be helpful to some. I am not a pain specialist or expert, but pain is one of the main things that people come to therapy for, I've seen it and treated it each and everyday for 10 years,and of course it is the subject of alot of our continuing education and treatment approaches.... so take this for whatever its worth to you.

For starters: pain is something that is entirely subjective- meaning it can't actually be measured- other than by what the person is experiencing. Peole also have different pain thresholds as to what they consider painful. There are many different types of pain, which is why they ask you describe your pain- Is it achy? Burning? Throbbing? Stabbing? Is the pain interefering with your ablity to get through your day?Is it constant? With movement? Does anything make it better or worse?

I think the main educational sites about MND say that pain isn't a PRIMARY symptom in this disease process-simply because people typically associate terminal illnesses with excruciating pain-like that often found in cancer or following major surgeries.

Pain IS a secondary symptom caused by the muscle wasting or weakening. Muscles primary jobs are for supporting and moving joints/bones. As muscles weaken, joints become difficult to move- causing pain in itself from lack of movement. Once a muscle weakens you begin using other muscles to perform the weakened muscles "job". It's your body's natural response to losing function- you find a way to compensate. So other muscles are trying to do their own job- PLUS the job of the affected muscles that aren't being used. I can't tell you how many people come to us complaining of a sore shoulder because of overcompensating for a hand problem. Again- it is only natural to find another muscle to do the same job "get er done" But overworking muscles DOES CAN PAIN. Even KNEE pain can be caused by a tiny little muscle not doing its job properly because someone was compensating for a small problem in their foot and began walking differently to avoid foot pain-and while they were doing that the knee muscle weakened because it wasn't able to do its job. So- they come to us with knee pain- come to find out upon further investigation (why are you walking like that?) and they say " Oh, well awhile back I got a sore on my foot, but thats not anything compared to this knee pain I'm having!"


So- though muscle wasting/weakening in itself is not painful- the results of it are.

As well-as muscles get thinner they fail to provide as much less and "cushion" to your joints, leaving your joints vulnerable to pain : from pressure ( thinning gluts=bony butt) and also from the joint not being able to maintain itself. Again a shoulder example: with a stroke the muscles are affected. We often find the shoulder not being able to "hold itself in the socket"- gravity begins to pull the muscles and joint out of whack- and since with a stroke there is often no other muscle available to do that job- like in the other example ( hold the shoulder in the socket) Our bodies can't even begin to compensate. So- this is when we must "adapt"- tape the shoulder in its joint- use a sling, etc. to prevent further pain and deformity while we wait for the muscles/nerves to regenerate. As we already know- in MND- the muscles and nerves DON'T regenerate because the problem is with the dying neurons.

Add to this cramping and spasms....a whole different type of pain.

So yes- you can have muscle and joint pain with MND, but it wouldn't be an initial symptom. It doesn't BEGIN with pain-but can cause pain.

Okay- think I am gonna go pop some ibuprofen after all of this talking about pain!

I hope this was helpful!
~Cindy
 

wright

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Those are all good points, Cindy. The medical community, however, does recognize pain as a consequence of ALS . . . pain from cramping, spasms, joint stiffness, etc.

When it is stated that ALS does not present with pain, they are referring to neuropathic pain . . . and the reason that is . . . is because ALS destroys motor neurons (and the nerves they form) . . . and typically does not affect sensory neurons (and the nerves they form), which are responsible for that neuropathic pain and other sensory issues.

There are a small percentage of PALS that can present with neuropathic pain and other sensory symptoms, but the percentage is so low, typically it causes a neuro to look elsewhere for a diagnosis.
 
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