After 7 Months On The Drug, Can Definitely Attest It Worked Against The Great Fatigue

Hi all,
As my CIDP progresses, though slowed with the use of Cytoxan, it has done the nasty on my body. After ravaging through my autonomic system, I have to use pills now to make different organs work. I have wonderful doctors, (7 of them on the team, since as it hit the different parts of the autonomic system, another specialist would come on board). They are, as I am now, prepared for the slow progression to the end. My Primary Care doctor is abosolutely wonderful now–if I call with the slightest problem, he or his colleagues are quick to solve or try to solve the problem. My PCP wants me to be as most comfortable as possible. We’re trying to fight the oncome of problems that happens when a body deteriorates. Some things work–some don’t.

What I didn’t like, was that with this damn CIDP, comes with it GREAT FATIGUE. I was getting to a point where I was in my bed most of my day, almost becoming bedridden. I AM NOT prepared yet to have that happen, as I know it is just figuring out how to beat the fatigue off. I’ve had discussions with my doctors–some saying it is to be expected as it is a symptom of the CIDP.

BUT-my neuro came up with an idea that he said–let’s give it a shot. To try the use of “speed” to combat it. So, since he said it should be controlled by a specialist in that area, dealing with the different meds and dosages, of which he said was not within his complete knowledge, (I love a doctor who tells me to my face, that does not know something or knows a doctor who has a better knowledge of something–rather than just try to take a stab at something without full understanding). So, he sent me to a neuro who specializes in sleep disorders. I like her–she knew of CIDP, and the fatigue that goes with it. No, I didn’t need to have a sleep test done, since I was already on a Bi-Pap to assist me to breathe day or night, (a common problem is Sleep Apnea, but I have apnea day or night, and use a bi-pap as needed).
And already knew what was causing the fatigue, being the CIDP. So, we tried some mild stimulants–I can’t remember their names at the moment, but they didn’t work.

So, I then went on Ritalin, (Methylin). She had me start with a small dose and work up until she thought that I felt it to benefit me. When I hit the
20mg mark–it WORKED!!! I take 20mg when I first get up in the morning, (usually betweem 3am to 5am–yes, I am an early riser as I love mornings).
Then around 11am, I take another 20mg. This gets me through the afternoon, making it to about 3pm-5pm. I started in March 2009. And I have to say it has helped me TREMENDOUSLY. Yes, some days it catches up on me, and I do end up with almost a full day of rest. But I would rather have that, then spending EVERY day in bed. And, when I have to go out to a doctor’s appointment, or go to my weekly aquatic therapy, I take both doses in the early morning. Just going out now, has be completely exhausted when I come home, even though I am in an electric wheelchair. But the pills give me the “energy” to get through with what I have to do outside my house, and if I need to somehow reach in my body for that extra input of energy needed to do a simple chore. I do know eventually I will become a bed patient–but I am not ready yet. My doctors have my house prepared with a hospital bed, oxygen machine, (I forget what they call that machine), commode, etc., plus I must use a shower chair in the bathroom.

Yes, this Ritalin can help combat others who get overwhelmed by the fatigue. Wouldn’t you rather have 4 or 5 or 6 days of feeling normal and 1 day in bed versus 7 days of fatigue and no energy to do simple things?

I hope this might help some of you. Fatigue comes with this stupid, lovely CIDP, and it’s something to fight back at. After 7 months of being on the Ritalin, I can say it has worked well. I feel the difference right away if I don’t take a dose as per my usual regimen now.

All the best,
Ken
(KEDASO)