Well I'm totally fatigued now. I ended up taking Friday off and slept the whole day. On Saturday I had a 4 hour nap. Sunday was another 2 hour nap, and yesterday another 1 hour nap. I ended up staying home anyway because of the nasty snowstorm we had.

I can barely get around, and am completely stiff. On Saturday, I almost fell in the supermarket when I turned to get something off the shelf. I grabbed the edge of the shelf just in time.

I knew things were changing for me before Christmas because I was getting more tired, but I pushed along knowing I was going on vacation. The vacation time helped a bit, but I was still really tired. Waking up at 3:00 am doesn't help much either with dystonia and the sweats, but I was able to get through it.

Now things are different. It's as though my Amantadine has become a sugar pill without any help. I don't have that burst of energy I had before! I'm also more tremulous then I was (hardly any tremor at all), and I have had difficulty lifting my feet. I noticed this the other day when I went to tie my shoes. I went to lift my feet up on to the chair, and I could barely move them off the floor. I felt like my shoes were tie-wrapped to the ground.

I did go for a blood test recently to check my B-12 levels again, and I'm taking 6000ug of B-12 daily. This didn't help the fatigue at all, which I was hoping. I see my PCP next week, and my neuro on Feb. 14th because the appointment got shifted due to bad weather.

Anyway, any thoughts on this other than dealing with the pooped-out-completely feeling, and sleeping a lot?

John

Hi John,
Sounds to me like you're under medicated.
Do you take levodopa?
If you do maybe upping the dosage a little would help, otherwise if you haven't started on it yet it might be time as it seems like your symptoms warrant taking it.
Cheers,
Lee

I know where you're coming from man, i'm there too.
All i can say is undermedicated. I get a bit of help from taking my L-dopa in the form of 600mg Controlled release, 600mg normal release, 200mg amantadine; Klonopin when you get to dyskinetic, and if you hav eto sleep, sleep.
After so many years with PD, there is nothing you can do, short of put your money on the DBS table. cs

Hello John-
I really hope you get better with new medication. When you are that tired , life is rest and sleep , I keep telling myself , this will never be my problems. Can you understand my reality escape , it works so far for me.
Some days I get very tired at lunchtime, I do not have a choice, my mind is gone and I fall down on the sofa , resting , sleeping for an hour. It must be hard to go to work when you are worn out.
Good to have this forum , we understand the struglge and say to you , BRAVO !

Thank you all for responding. After I posted this, I contaced my assigned nurse at the Accordant Healthcare group. They provide free consultation as part of my health insurance. She said exactly the same thing! It's time for a change of some kind either an increase in what I'm taking, or some other change. The bad part is my neuro is on vacation at this time and I don't want to go to her covering doctor. If I could have seen her on the 10th when my original appointment was scheduled, I probably would've have been fine, but sadly you probably know the kind of luck I have. This is one of the reasons why I don't play the lottery.

This dreadful fatigue has now affected my school work as well. Sadly I've missed 3 days this past week, and being a 5-week course I'll never catch up. I'll pass anyway because this IS the last week, but it wrecks my grade. I had maintained an 98 average in this class so far.

Annelise, I understand exactly what you're saying. The sleep really does feel wonderful when I can do it. Working is tough and unfortunately I can't stop otherwise I'll lose my health coverage. This is a bad thing about America right now. If only they'd fix the health care system! The private insurance companies and drug companies make so much money off of the patients. There are some studies that are saying that the two are working together to get as much money as they can.


Lee,

I do take L-Dopa. Sinemet 25/100 6 1-1/2 times per day plus 3 100mg Amantadine 3x per day, and 6000mg of B-12. Every time I pop a sinemet, I pop a B-12. Also now 1 Citalopram 10mg (Celexa), which has helped the depression quite a bit, but not the poor piano playing and fatigue.

OL'CS,

I've been looking into DBS, but I'm not ready for it I don't think right now. I don't have a tremor all the time. It's just happening more often now. I noticed too that my right leg gets tremulous now too after I've been doing a lot of walking. So far I've been keeping a list again for when I see my doctor in February. This will help me remember what to tell her when I see her.


John

Hello John
I`ve heard about the bad health care system in America have to work when you are ill and worn out ,may be it is a kind of slavery. I think that you do not own yourself , or is it the way life is , survival of the strongest. Hope this is not politic, I just feel sorry for you when you are tired and need to lie down. Money is important when you do not have it, but many things in life is free, I try to enjoy and do this things witch are for free.

Yesterday I cleared my wardrobes and closets, still I HAVE BOUGHT things I do not need.
I know it is a side effect of the Requip, so - I have to foole myself, be tricky and leave my creditcard on a safe and secret place , it must be found only when I realy need it !

John, I think fatigue is always a part of having PD since it tends to wreck our sleep. But, when it gets to be so extreme, I agree that it sounds like you may need a med adjustment.

I don't know how long you've had PD or how advanced you were when you were diagnosed, but it sounds like a lot of Sinemet to be taking to me. I've been diagnosed with PD nearly 12 years and have taken Sinemet since Day 1! Yet, I too am taking 6 Sinemet per day. But I take a lot of other PD meds along with it. Years ago, I was told by a neurologist that the goal is to use a variety of meds in low quanties so as to limit the various side effects each med can can cause.

Just for comparison's sake, after almost 12 years of PD meds, I take:

- Sinemet 25/100 x 5 per day; 6th (last) dose is Sinemet 50/200ER to last
longer so I can stay asleep longer.

- Comtan 200 mg x 6 per day

- Mirapex 1mg x 6 per day

- Experimental study drug Istradefylline (KW-6002 study) 2 each morning

- Amantadine 100mg x 3 per day (a recent addition that has really helped
with dysknesia and off times)

Maybe the addition of an agonist like Mirapex or Requip would give you the boost you need. But, also don't forget that having PD doesn't protect you against developing other illnesses. Your fatigue could be caused by something that's not PD related so you might want to have a check-up with your primary care doctor, especially if it's been a while since you've done this.

Good luck finding the solution to whatever is bringing you down.