when does it stop?

Every morning I wake up a new ache or pain or dizziness and wonder if I have a new ALS symptom. I am sure most of it is just due to my 63 years on earth or overdid it washing the car or something but this disease is haunting me. When does it stop? Does one ever stop worrying about this and just get on with life? It is the first thing I think of when I wake up and the last thing before I go to bed.

It hasn't ever stopped for me, but I am learning to try not to dwell on it as much. I don't know what anxiety/anti-depressants they have you on.......but when you figure that out, it could take the edge off and you will sleep and cope better.
I call it "The Black Cloud", and for me it really never leaves.

Sunvista, if you wake with dizziness I'm also wondering are you on bipap? It may be breathing issues at night.

I know you are talking about how you feel in yourself, but I also know that many PALS needing bipap feel heavier psychological effects because of the CO2 buildup.

I also agree with Mark that you may need anti depressants to help with this.

As a former CALS, I can tell you honestly that ALS hung over me like a black cloud the whole time, and also for Chris. I developed ways of coping with it, took anti depressants, saw (and still see) a counsellor, and talked with people here. These things all helped heaps. They did not remove ALS from my life, did not make Chris better or even slow his rapid progression. But they allowed me to cope, to learn to accept and to make the most of what I had.

None of this is easy. No one here will tell you it is.

I hope we can just help you to find your own way through it to a way of finding quality in everything.

> Does one ever stop worrying about this and just get on with life?
No and yes. You'll never stop worrying but you will get on with life. The initial hump is pretty bad but it will get somewhat better.

regarding the aches and pains, and BigM's comment about anti-depressants --- I 'just' threw in the towel and asked for something, and got Zoloft.

Guess what one of the side effects of Zoloft is? Muscle aches! So, which new pains are from ALS and which from Zoloft? sheesh...

Greg Chris was put on Endep and he had a great side effect from it - he started sleeping for the first time in well over a year ...

Tillie: that one has a couple of interesting extras: also used to treat nerve pain and can cause weight gain. Both pluses in my book!
There were a few others in my practitioner's book but some could depress breathing!

SunnyV, re: "overdid it washing the car". You do have to conserve energy. If you burn your 'daily allotment' washing the car, don't expect to walk at the mall later.

Bipap has helped me a lot. Two years after onset, and ten months after diagnosis, I still have no need for anti-depressants. YMMV.

Maybe I'm too dumb to worry?

GB I doubt it is because you are dumb lol

But not everyone needs anti depressants, but if you do it is wise to get onto it earlier than later.

My Chris had FTD and was rapid progression bulbar onset, we both needed medication help!

no annti-depressants for me ... wild women, fast cars, and booze!

ok, Sandy, a wheelchair van, and a cheap white ...

I bet Sandy is wild enough for ya Max!

>I bet Sandy is wild enough for ya Max!

you betcha!

I can relate to that // I can't sleep very well at night either/the dr put me on remeron/ I have a cpap but don't wear it because it gives me panic attacks

@ Doglvr - really they gave you a cpap? You need a better doctor if that wasn't a typo. There are different types of masks that may help stop the panic feeling too, but please don't use cpap!

as my muscles start going my joints ant staying together to good and that is hurting. im hurting in my back now to. not for to long im going to need something. last night was the last time for me sleeping in my bed. i could not get out and when i got help. the pane it felt like my arms was pulling apart.

I woke up yesterday with a stiff neck. Naturally I imagined nerves dying in my neck rather than just sleeping in an awkward position. I'm not on bipap. I have a prescription for Lexapro but it doesn't seem to be doing much.