Why is Fibromyalgia here with MND?

[Guest]

Please explain why Fibromyalgia is part of the ALS Forums? I'm just wondering and hoping to gain insight. I know before my husband was diagnosed with ALS he wondered if he had Fibromyalgia. Also, I've read that ALS patients usually don't have pain, but he does..neck, shoulder, back... He even had a neurologist tell him pain isn't usual with ALS. ? I see many people in the ALS Support Forums discuss pain they are having?
Is this Fibromyalgia. Does it go hand in hand with ALS?
Confused. Thanks for insight!

 

[Guest]

hi kissj,no fibromyalgia has nothing to do with als/mnd.
i think it has been put here as a none neurologigal differential diagnosis..............though i ofton think mitichondrial disease can present very much like als with its symptoms and should be put in this section.
the pain in als is most likely caused by umn symptoms such as spasms and cramps or problems with the joints and contractions from imobility.
hope that explains it for you.

 

[Guest]

drs dont seem to realize that there is often pain with ALS. Not as an initial symptom- but later on. Once someones muscles have wasted away- lets use the shoulders for example- there are only tendons holding the arm in place. and the weight of the arm alone can hurt, as its always pulling on these tendons.
Some folks have pain with the muscle cramps too. And of course, with lack of mobility, pressure points hurt from being in on spot too long. Losing weight and muscle also leaves less padding for the bones, and that hurts.
It would be nice if it would be cleared up in the medical world- that there IS pain with ALS, its just not an initial symptom. Some PALS even have to switch drs because they think the PALS is just drug seeking. Very sad.

 

[Guest]

Thank you both! This explains completely. My husband has a lot of pain, and I thought it was just something else. Yes, it all is sad!

 

[Guest]

I think perhaps because Fibro has some very weird symptoms that can seem to mimic ALS to those that post a few key words in Dr G. Fibro is another of those conditions though, that often is found later to be something totally different.

The thing with fibro is the pain seems to be muscular--but in reality, they've found people with fibro have higher levels of pain neurotransmitters--so they hurt constantly.