Pain and ALS

[Sophia]

Hi Thank you all for your comments on suggestions for my Mom's pain. Yes having the covers on her legs creates more pain. Usually she has her feet uncovered so they don't warm up. Her feet were swelling a lot too and we went to the doctor. He trippled her lasex dose and it seems to have helped. He said that she's experiencing some heart failure and her heart was not pumping the fluids from her legs because of her immobility. Mom has an artificial aortic valve as she had a massive heart attack in 1985 and has struggled with her heart since then.

Mom went into the hospital for a PEG feeding tube last week. Because of the warfarin she had to go off they ended up keeping her for a week trying to get her INR level stabalized again. She also developed a rash on her back that they said is Shingles! She came home yesterday and has SEVERE diarrhia. Not sure if it's from the feeding or if she caught some kind of bug. Anyways she is not well at all. Has anyone else experienced this kind of problem with the feeding tube?

Thanks again for all of your comments and well-wishes. This truly is a terrible devastating disease.

Sophia

 

[hopingforcure]

Sorry to hear about your mom's troubles. My mom had very similiar heart issues, along with a pace-maker, she was do to have a arotic valve replaced but never regained enough health for the procedure. She also developed shingles, and that can surely be from the immune system and such. I wish I had more experience on the feeding tube but am sure many others do.
My mom had much pain from the shingle's to say the least, she was never tested for als, the thought never crossed anyone's mind, for she was just so sick from a ton of other ailments. We wonder now that she is gone, if she did have that also, she had so many symptoms that we all attributed to other things, and als was not on the radar at that time. After I became sick shortly after she died, we all started putting things together.
Hope your mom get's better, goodness you guys are having a much to tough road.. Keep us posted.

 

[kcoats]

My Moms's Pain

My Mother is in her last stage of AlS and we may lose her very soon. She has also experienced pain during this past year. Throughout this time, we have been told, and I have read, there is no pain with ALS. Well, I believe ,( and I am not medically trained) that each person experiences ALS in their own unique way. I have a son with Autism and I know that on the Autism spectrum, each child experiences it differently. My Mom's experience of pain is not a constant sensation, but more a sensitivity to anything that lays on her toes or creases on her back like a sheet or something. We laughingly call her "the princess and the pea". (She laughs about this too when she can)She has been a very good sport and has kept a good sense of humor , but has also suffered a GREAT deal with this ugly illness. There is MUCH more to it than just losing muscle control,etc. Muscles dying and nerves losing communicating abilities is not without sensation. I just think that each person experiences it differently. I am certainly not saying that your mother should not have her pain checked out further, as another person wrote, since there could be another problem with something like diabetes,etc. I am just telling you of what sounds like a similarity in what our mother's have been feeling. Hope this helps on some level.

 

[Marjorie R. Wilcox]

A comment on pain and not understanding why Rick doesn't have any. He has ALS and when he was in the explosion that almost took his right leg, he never reported his pain higher than a 2.... and never took the narcotics prescribed for him. He only took a little extra strength Tylenol. 5 surgeries the first week... bone graft... skin grafting

In fact he has lost a lot of feeling such as in the cold. This winter he would go outside to dig our car out of the snow in subfreezing windy weather, without even a hat or gloves. I'd go get them and make him put them on.

He is diabetic, but only Type II. He staggers with weakness in his legs.... avoids stairs, especially going down... and falls asleep anywhere if he doesn't get his naps. He has stiffness and curled fingers in the morning. But there is never any pain.

I am thinking it is because he doesn't have fast progression and the pain will come later.
And, of course, we consider it a great blessing that pain isn't something he has to endure!

Any comments on that?

 

[joelc]

Hi Marjorie, maybe he just has a high threshold for pain.

I would like to suggest that pain will not happen later.

I used to have a lot of pain but not now, maybe I am just getting used to it but it seems to get better the further I progress. It might be because I don't have much muscle left to hurt. ...... LoL.

 

[Marjorie R. Wilcox]

Thanks Joel. Doctors are stymied about Rick's lack of feeling. When they poke him with the tip of a dull pin, most times there is nothing. I always tell them " This is good, isn't it?" and they reply with "No!" You should see their faces when they ask, "How is your pain today?" and he says he doesn't ever have any.

I complain of a headache now and then or of my severe carpal tunnel. He says he's never had a headache. Probably we'll never have any answers, but I am still glad he doesn't suffer pain or have to take meds.

 

[ebeck]

I have not been on this site for a long time but this thread caught my attention. My husband has complained of severe pain for the past year and multiple Doctors told him there is no pain associated with ALS. We finally found a doc to give him the pain medications he needs to rest comfortably. Lately his hips hurt so bad he wakes up often in tears. He takes oxycotin and some Morphine and still has pain. We have a 18 month old daughter and he often does not get the care he deserves because my time is spread so thin. I hate to see him in pain and have those in the Medical field tell us that there is no pain in ALS. I just need to look at him to know he is suffering. I agree that every ALS patient is different and we need to realize that as patients and caregivers, we know more about our individual cases than anyone else.

 

[joelc]

ebeck, I am very sorry your husband has pain. I hope he can eventually get past it, I did!

I am also amazed that all the professional people keep insisting there is no pain with ALS as I had it and know countless others who have as well. They must not be listening!

 

[mewoodyrich]

Sophia, You want to keep an open mind about the responses you receive. The bottom line is that every person is affected differently, so nothing is etched in stone. I was recently diagnosed with ALS, after a second opinion. I know of two other individuals that have or had ALS and had no pain. In my case the pain is actually unbelievable 24-7. My neurologist has had me try many things and we are on oxyicotin three times a day now. I was a police officer and tell people I find the oxyicotin over-rated by dope heads, as it is having little effect on me. I ache all over and have had the burning sensation in my arms, so I know what you are talking about. Take Care.

Mike

Hi Mike, I noticed you referenced being a police officer. My family member, also police officer, was diagnosed in 2007 with ALS. Would like to hook up with you to dialog on support as it relates to yr fellow PD comrades. I am also wanting to identify where we might have more police officers who have been diagnosed with ALS. Thanks