Chest pain / cramping?

[sunandsea]

My husband was complaining of pain this evening that seemed to migrate from chest to lower - stomach / trunk. He has a fear of his heart failing and becomes anxious when he has anything resembling chest (heart) pain. I'm just wondering how one would know if it were heart vs. other muscular cramping and if it is common to have such pain as the disease progresses. He has ftd as well and so a difficult time expressing his thoughts and what exactly he is experiencing. However, he didn't appear to have other symptoms of a heart attack but this has happened before and I do wonder if we would know if it was cardiac problems vs. muscular. (Sorry if this is one of those silly, obvious questions.) Thanks in advance for any advice, experience from PALS and CALS.

 

[lgelb]

Hi, Sun,

As with anyone who doesn't have ALS, if there are symptoms of a heart attack/stroke/aneurysm, and no other explanation for them, there is nothing wrong with seeking care.

Persistent sweating, dizziness, sudden exhaustion, nausea, paleness, clamminess, chest/back pain, chills and altered levels of consciousness are symptoms that could prompt that trip to the ER (especially a change in mental status that coincides with a change in physical symptoms). But as with anyone else, there is no 100% way to know. Your own knowledge of his health is surely part of it, so if you ever feel you should go, you probably should.

 

[gooseberry]

I had bad chest pain back in January...I had a full cardiac workup because the doctor was concerned. Turns out, in my case, it was anxiety and panic attacks.

I would ask.....has his breathing or swallowing changed? Steve did get brutal abdominal and chest muscle spasms. Can you see his chest and belly contracting? Are the pains temporary or always there? Do they get worse with food? Many pals develop other health concerns that may not be als...gallbladder and kidney stones and diabetes come to mind.

 

[Ells]

Hi S&S,

It must be scary for you both, especially given his difficulty in verbalising his symptoms.

I get quite bad cramps in my intercostal muscles, which can travel up and down one side. I know what they are, yet they can still be unnerving!

Of course if there's any suggestion his heart is involved, that's a different situation.

Ells.

 

[sunandsea]

Thanks, all of you. The pain comes and goes but there are no other heart symptoms (sweating, nausea, etc). I also think anxiety may be involved and when the pain comes, he becomes more anxious. It's helpful to hear of your pain, Ells, but I do hope you don't feel it again.
He doesn't usually complain much so when he does, I know the pain is real and want to address it as I should. I appreciate your help in determining what it might be.

 

[gooseberry]

Steves cramps in his abdomen and intercostals were really bad. They gave him tramadol which didnt help the pain. Aleve helped most. The pain when his abdomen would clench would double him over and he said he felt like he was suffocating when it happened in his chest.

Anxiety meds probably helped him the most

 

[GilWest]

I hope this is not off base, but dying from a heart attack would be preferable than the progression of ALS in my opinion...

 

[Ells]

I hope this is not off base, but dying from a heart attack would be preferable than the progression of ALS in my opinion...

Actually as a PALS, I find that remark offensive and upsetting, that's my opinion...

 

[faithandlove]

Prior to being diagnosed, I had pains in my chest before and I fainted in the hospital. They felt it was vertigo and stress. I did have Orthostatic hypertension (blood pressure drops when standing up - normal laying down). Orthostatic hypertension is horrible to have when you are going to the bathroom and you feel like you are going to faint. Now when it happens, I can't lay on the floor and wait to get stronger. If I lay on the floor, I can't get back up - hoyer lift (UGH). I still get pains in my chest, but I won't say anything. If my heart gives out, so be it.

We all have different feelings and reactions to this terminal disease. I have thought often that I wish my heart would just give out and end this. That happens on bad days, and PALS and CALS both have bad days. It is so difficult for CALS to have to jump up and down to help us PALS, and it is difficult for PALS to see how hard it is for their CALS. I don't like to be dependent on anyone.

On good days, I'm glad to be alive and still getting around, but ALS causes so much turmoil. All the equipment in the house, the people coming and going, the changes each day to your body and the worry of what will give out in the future. Some PALS are young, and have young children. They should fight to stay alive as much as they can. At my age (64), I've lived a good life and, being an active person all of my life, living like this is pure torture. I'm really to go.

Point I'm making - Ells please don't be offended by GilWest's remarks. The experience of ALS by GilWest caused this remark. Your experience must be completely different based on your personal experience. I agreed with GilWest's remarks because of my age and my journey with ALS.

If it's meant to be - it's meant to be.

Hugs,
Deb

 

[bigmark1954]

I hope this is not off base, but dying from a heart attack would be preferable than the progression of ALS in my opinion...

I am not offended in the least by your comment......it is realistic and honest!

Something about "quality of life" makes it reasonable. Many PALS are happy to press on in their decline, some are just plain miserable. This subject is a personal issue.

 

[gooseberry]

Steve refused to use his pwc many times. He knew walking was risky at best. He knew he wouldnt be able to breathe if he fell....yet he chose to walk.When I chided him for not using his tools and that he might fall and die, he said good. It is better than living like this. 3 days later he did just that.

 

[vzandt]

My husband told his neurologist , nurse, Doctor, social worker.....the whole team..that he had been having chest pains. They told him to go see his PCP because it could be cardiac related. He died the next day. Heart attack ��

 

[tripete]

Steve refused to use his pwc many times. He knew walking was risky at best. He knew he wouldnt be able to breathe if he fell....yet he chose to walk.When I chided him for not using his tools and that he might fall and die, he said good. It is better than living like this. 3 days later he did just that.

The hard part here is that our loved ones can take our comments and actions as a "slight" on them when it really is not meant to be that. The struggles of living like this can be overwhelming and often we just want it over. It is not meant to say anything about those who are close to us just and expression of how frustrated and lonly this disease has made us.

I do not use my chair as often as I "should" either. It is not as much a death wish as it is a desire to hold on to whatever freedom and ease of life I can. I am rapidly approaching a point where I will not have a choice. If someone where to chide me for walking though I think I might have the same reaction as Steve.

I also get chest and abdomen pain/cramping it is a part of my "new" and more miserable life.

 

[gooseberry]

Steve had no real cramps at this point Pete. I worried àbout dying, he worried about living. He was at a big crossroads. I understood his point, I was just afraid.

When he was having spasms, they were very painful and he face planted twice, this was before diagnosis. These were mostly leg,hip,back spasms. Later the abdominal and chest ones came...right around his diagnosis. My fear was always a fall because they were so painful and came out of the blue.

 

[tripete]

The spasms, lock ups, cramps, I am never completely sure what is happening but they hurt like crazy and come from no where. Couple that with the leg weakness and I guess a fall is inevitable if you are not in a chair.

"I worried àbout dying, he worried about living." This is very well said and where, I believe, most CALS and PALS are at.