Old 12-06-2017, 07:39 AM #1 (permalink)
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Default Things that you do not hear about ALS

In June of 2016 I posted a thread about Pain in ALS and how the "experts" tell us that ALS, as defined by the dying/malfunctioning of our motor neurons, is not painful.

As time has progressed I have found many other things that "they" tell us are not issues that are. Like Smell, Bathroom Issues, Mental/Emotional Abilities, Sight etc..

As there seems to be more new members I thought I would re-post my original statement about it knowing that many of you "more experienced" members could weigh in on what they have found. I do this not to scare the people new to the disease but to hopefully help them to better prepare.

6-11-2016 Pain and ALS

The experts and the different websites that we read will all tell us that the malfunctioning motor neurons and subsequent muscle wasting is not painful. And while technically this is true it is also misleading. As in my experience ALS is very painful.

Physically -

We go through excruciating muscle cramps in every imaginable part of the body. This morning I was awoken by my left forearm cramping so bad that it caused my fingers to curl and lock. While this is not the motor neurons dying or the muscles wasting away, it is caused by ALS. What little muscles I have left in my arm have to do extra work to just function during the day. That, with the work that the fasciculations constantly put on them, cause them to fatigue and cramp. The worst for me is when my neck and jaw cramp and lock up.

We go through extreme headaches. These headaches are most likely caused by CO2 building up in our blood as we sleep. This is caused by our breathing muscles not properly expelling carbon dioxide. Again it is not the motor neurons acting out or the muscles dying, but it is a direct result of these things happening that causes our diaphragm to no longer function, causing us to not properly remove the CO2 from our body, leading to incredible head aches.

We go through joint and complimentary muscle pain. As certain muscles die, it puts additional strain on our joints and other muscles. Last week the muscle on the top of my left foot was in extreme pain. This was caused by the other muscles around my foot weakening and being dead, putting more strain on the small muscle at the top of my foot. A muscle not meant to do the work that it now has to do. Again this is not pain from motor neurons dying, or muscles dying, but it is caused by those things happening leaving our bodies in a weakened state.

We go through coughing and joking fits. I do not know why our bodies secrete so much phlegm but they do. It is in some way a direct effect of this monster. It is painful in the cramps, the headaches, and the soar throats that it causes. Motor neuron or muscles dying may or may not be the cause but either way it is painful.

Mentally -

I cannot even begin to explore this. The anguish our minds go through and that of our loved ones is more sever than any pain that can be imagined. We waste away a little more each day and can do nothing to slow it or stop it. It is truly out of our control.

Conclusion -

There are of course Medications, the Bipap, Venting, Feeding Tubes and other things that can help manage all these pains. These are all viable options and good for some. For some of us though, we choose to live with the pain. For me the mental clarity is worth the pain. I also choose to "fight" this disease by letting it take its course. I will, by Gods Grace and Mercy, try to serve my family with any form of energy that I can muster. I will not let ALS take away my love for them by making me mean and bitter. The pain will not negatively effect who I am. I cannot stop ALS, but I can define who I am and what my actions will be. It is all that I have.
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Old 12-06-2017, 08:15 AM #2 (permalink)
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Default Re: Things that you do not hear about ALS

Pete, in the prologue to your repost you mentioned smell. What about it? Do you experience phantom smells, altered sense of smell, inability to smell? I experienced phantosmia for a number of years prior to my diagnosis, but it significantly abated with the progression of my limb weakness. All the other joys you mentioned regarding related pain have been my experience as well for the past three years. My onset of symptoms began in mid-2014, but by the time I sought treatment I had also developed lung cancer and the cramps and fasciculations I was experiencing were thought to be paraneoplastic in their origin.
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Old 12-06-2017, 08:21 AM #3 (permalink)
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Default Re: Things that you do not hear about ALS

Very well said as usual Pete. I know Steve suffers from a lot of what you wrote. You are always so willing to share glimpses of your struggles and by doing so you help others. Thank you Pete!
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Old 12-06-2017, 09:13 AM #4 (permalink)
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Default Re: Things that you do not hear about ALS

Smell - I smell cigarette smoke so strongly at times that it gags me. No one in my house smokes or ever has. Even if I am out I smell it. Sometimes it goes away sometimes it is there. I think the more fatigued I am the stronger the smell is. I did post about it in the past if you search "smell" in the search box you will find a thread on it. It has other peoples experiences as well.
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Old 12-06-2017, 01:39 PM #5 (permalink)
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Default Re: Things that you do not hear about ALS

Cigarette smoke gags me when I encounter it. I have a neighbor that burns his garbage weekly during the summer months. I can't even go out side when he burns. He knows that I don't like his fascination for burning, I wish I could tell him why.

Even burning wood in the fire place affects me. I have a friend that chain smokes, his whole life revolves around a cigarette. When I see him just the smell of smoke on his person gags me.

I have never smoked, at least I never inhaled, but I did hang around bars and the smoke did not bother me.
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Old 12-06-2017, 01:42 PM #6 (permalink)
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Default Re: Things that you do not hear about ALS

I had a similar discussion with my neurologist yesterday, Pete. I brought up autonomic stuff, pain, urination issues and constipation and her response was "The people who write the texbooks clearly don't have access to real patients."

Thank you for posting this.
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Old 12-06-2017, 01:50 PM #7 (permalink)
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Default Re: Things that you do not hear about ALS

I've been very sensitive to all fragrances and smoke for years before ALS. But now it's absolutely horrible. Cleaning products, perfume, but smoke is the worst. I can smell a smoker from across the street. I also can smell mildew and the smell of vinegar, which I use to clean, gags me now. I was at a friend's house last week. I had to use the bathroom. The minute I opened the door I was assaulted by the smell of smoke, mildew, and fragrance. It was my idea of hell. I mentioned I didn't know her husband smoked. She said he only smoked outside. Of course, I dropped it.

Why can't this disease kill off my olfactory nerve?

I can relate to the pain. Some of it is a result from torn rotator cuffs but sometimes my muscles just ache, stab, throb, etc.
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Old 12-06-2017, 02:09 PM #8 (permalink)
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Default Re: Things that you do not hear about ALS

Smoke - For me the smoke smell does not seem to becoming from any external source and is only in my brain. I have spent months trying to find it with no success. None the less it is all to real for me.
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Old 12-06-2017, 03:15 PM #9 (permalink)
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Default Re: Things that you do not hear about ALS

Thank you for your insights Pete.

Brian has not complained of any pain or cramping throughout his years with his monster, but smell that was a tough one. None manufactured, but If I was cooking something it seemed to go right through his vent, in the other room. I always had to use the fan over the stove. That seems to have gone away. Hopefully it will for others as well.

Hugs,

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Old 12-06-2017, 03:20 PM #10 (permalink)
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Default Re: Things that you do not hear about ALS

The enhanced smell has some positives...I have a teenager and I can smell beer/liquor or weed from across the room. He thinks I have super powers!
LOL, you have to find humor where you can
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Old 12-06-2017, 03:29 PM #11 (permalink)
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Default Re: Things that you do not hear about ALS

Jocalyn, as a fellow haver of a teenager, I had to laugh. I haven't busted my 18 yr old yet, but I have my suspicions. They've come home absurdly cheerful on several occasions. I'm not too old that I've forgotten what being 18 is like.
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Old 12-06-2017, 04:24 PM #12 (permalink)
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Default Re: Things that you do not hear about ALS

Brian has had cramps, headaches (without any measurable respiratory involvement now) and odd peripheral pains. His bowels and blood pressures have changed. His sense of smell is heightened, and his hearing has slightly decreased all since the ALS diagnosis.

It’s interesting to note that out of all of the above changes, only the cramps are technically recognized as ALS related. I realize bowels and blood pressure are effected by activity levels, but the rest I honestly suspect are part of the ALS syndrome and are not acknowledged as such.

I just wanted to add that I recently had to challenge myself not to be bitter about this disease, and I am not the one diagnosed.
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Old 12-06-2017, 06:50 PM #13 (permalink)
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Default Re: Things that you do not hear about ALS

I remember the neurologist who confirmed my dx telling me "I know how you feel". I looked at her and said sadly "no, you don't, you really don't". She looked shocked, and little embarrassed.

I really think that to fully grasp such a complex disease as ALS, you have to live it. There are SO many different things that crop up (I hadn't heard anything about smell til today) and lack of pain is one of the biggest things I've seen the contradict the disease "PR". I am into daily low grade pain that is just wearing me down, even more than the mental anguish.
(I'm working on a pain management strategy w my doctor).

It's no wonder it feeds into health anxiety-a person so inclined to dwell on the worst can find just about any symptom under the ALS umbrella, if they look hard enough. And yet, the official sites & publications have the same basic facts that seem to follow to the letter the definition of the disease-no secondary side effects, for example.

Just a bunch of scattered thoughts to say I'm sorry for those that are smelling odd things, and thank you for sharing.

Liz
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Old 12-06-2017, 07:39 PM #14 (permalink)
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Default Re: Things that you do not hear about ALS

Quote:
Originally Posted by LizF View Post
I remember the neurologist who confirmed my dx telling me "I know how you feel". I looked at her and said sadly "no, you don't, you really don't". She looked shocked, and little embarrassed.

Liz
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Wow. My husband, my heart and soul has this and the day he was diagnosed will stay with me until I leave this world. I don’t know how you felt, though. Or how he felt. I could not possibly.
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Old 12-06-2017, 08:20 PM #15 (permalink)
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Default Re: Things that you do not hear about ALS

Wow, this thread is an eye-opener. I'm sure Liz is right, it's hard to even try thinking yourself into a patient's body and mind. But I'm glad I've read this before my boyfriend develops more symptoms. Thank you for the heads up and most of all for sharing!
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