getting frustrated

[Seahorse714]

Hello, I have preliminary diagnosis of PLS and am in the ALS research study in Miami. I am taking focalin to stay awake during the day and it has been increased several times, just recently to 15mg 2x daily but I feel nothing. I am still fall asleep during the day and feel exhausted. It's getting harder to climb the stairs at work and am winded with 2 flights of stairs. I tried to ride my bike for exercise and due to clumsiness my foot slipped on the pedal and cut my ankle open. I also tried swimming at the public pool and paid and then realized I didn't have my bathing suite. I now walk the dogs separately because they are to hard to handle together. When I am at home I doze off and am often suddenly startled by someone texting me. My whole body jumps ridiculously. I'm getting frustrated. Just venting.

 

[ShiftKicker]

Your experience, I think, is pretty common. I am sorry to hear your fatigue is so profound. I am not familiar with Focalin- before I received my MND diagnosis, the first real symptom I struggled with was fatigue. My doctor tried everything, including crazy weightlifting supplements, antidepressants and Ritalin. Nothing helped with the fatigue- I just got the shakes and couldn't concentrate. I think it's just part of the disease mechanism, and any drug induced energy would be robbing Peter to pay Paul.
I had to laugh about the dogs- I just started doing the same with my two maniacs. They get so offended when one gets left behind. I have to say, when on lead singly, there is way less pulling and way better behaviour.
You were brave trying the bike. I know some people on here have used a recumbent bike, as it's less strain on the hips and pelvis- and less distance to fall.
Seahorse- grinding fatigue is awful. I am so sorry you're experiencing it.

 

[ShiftKicker]

Post went to mod again! I need to figure out the trigger words.

 

[gooseberry]

Focalin is an adhd med to help with focus. About the diet, I would just try to eat a very healthy well balanced diet.

 

[Seahorse714]

Focalin is an adhd med to help with focus. About the diet, I would just try to eat a very healthy well balanced diet.

My insurance will not pay for nuvigil or provogil but they did approve the stimulant Focalin to help with excessive sleepiness. That is prescribed as an alternative to the above Meds.

 

[Seahorse714]

Your experience, I think, is pretty common. I am sorry to hear your fatigue is so profound. I am not familiar with Focalin- before I received my MND diagnosis, the first real symptom I struggled with was fatigue. My doctor tried everything, including crazy weightlifting supplements, antidepressants and Ritalin. Nothing helped with the fatigue- I just got the shakes and couldn't concentrate. I think it's just part of the disease mechanism, and any drug induced energy would be robbing Peter to pay Paul.
I had to laugh about the dogs- I just started doing the same with my two maniacs. They get so offended when one gets left behind. I have to say, when on lead singly, there is way less pulling and way better behaviour.
You were brave trying the bike. I know some people on here have used a recumbent bike, as it's less strain on the hips and pelvis- and less distance to fall.
Seahorse- grinding fatigue is awful. I am so sorry you're experiencing it.

What is a recumbent bike? Is that a 3 wheeler? So the Ritalin didn't help you? Focalin is a stimulant also. I feel less active and not motivated to exercise. I was going to try swimming after work but always decide at the last second just to go home.

 

[Green Queen]

Seahorse I'm sorry for the predicament you find yourself in.
One of the toughest things is to accept the changes, and find alternative ways of doing things you love.
It certainly does sound easier said than done, to be honest that's true. I'm a tap dancer and am still working on the one legged dance!
Unfortunately progression will continue, so it's continual Accept, Adjust, Accept, Adjust. . .
All the best with everything. Don't forget we are all here, no vent is "wrong ", nor is any question.
God bless, Janelle x

 

[Seahorse714]

Seahorse I'm sorry for the predicament you find yourself in.
One of the toughest things is to accept the changes, and find alternative ways of doing things you love.
It certainly does sound easier said than done, to be honest that's true. I'm a tap dancer and am still working on the one legged dance!
Unfortunately progression will continue, so it's continual Accept, Adjust, Accept, Adjust. . .
All the best with everything. Don't forget we are all here, no vent is "wrong ", nor is any question.
God bless, Janelle x

Thank you Janelle!

 

[4tloml]

Seahorse, have you had any breathing function tests done?

My husband had that relentless fatigue while he was still working, but it let up so much once he retired and began using a trilogy a few hours during the day. (He'd already been using an IVAP every night for over a year.)

Do you use a bipap at night or have you had a sleep study done?

That fatigue can make everything harder. I hope your doctor can help you get a better handle on it.

This is the perfect place to come vent or when you're frustrated. This community's all in it together. We get it. And sometimes expressing a frustration or problem can lead to a solution when others chime in.

 

[Seahorse714]

Seahorse, have you had any breathing function tests done?

My husband had that relentless fatigue while he was still working, but it let up so much once he retired and began using a trilogy a few hours during the day. (He'd already been using an IVAP every night for over a year.)

Do you use a bipap at night or have you had a sleep study done?

That fatigue can make everything harder. I hope your doctor can help you get a better handle on it.

This is the perfect place to come vent or when you're frustrated. This community's all in it together. We get it. And sometimes expressing a frustration or problem can lead to a solution when others chime in.

Hi, I had some breathing test recently but I haven't found out the results yet. I need to check on that.

 

[ShiftKicker]

Seahorse- a recumbent bike is one that you recline in instead of straddle like a "normal" bike. You lean back and push the pedals forward instead of balancing and pushing the pedals down. It sits a little closer to the ground and can be easier for those with back and hip problems. And you can go really fast!
Ritalin sounds a lot like Focalin- I wonder if it's the same drug by another name due to the licencing in the States vs Canada.

 

[Seahorse714]

Seahorse- a recumbent bike is one that you recline in instead of straddle like a "normal" bike. You lean back and push the pedals forward instead of balancing and pushing the pedals down. It sits a little closer to the ground and can be easier for those with back and hip problems. And you can go really fast!
Ritalin sounds a lot like Focalin- I wonder if it's the same drug by another name due to the licencing in the States vs Canada.

That sounds like my kind of bike., I might have to get one of those. I was also thinking about a three wheeler. And I was confused I am taking Ritalin not Focalin. They are similar. Methylphenidate is the ingredient in Ritalin and dexmethyphenidate is ingredient in Focalin.
I'm going to try just walking for exercise tonight and see how that goes.