After 7 Months On The Drug, Can Definitely Attest It Worked Against The Great Fatigue
AnonymousOctober 24, 2009 at 7:22 am
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,
AnonymousOctober 24, 2009 at 2:31 pm
VERY INTERESTING! I feel like my fatigue is debilitating, it overwhelms me and controls my days. The tiredness is in my eyes mostly. One of my problems with fatigue though is that CIDP took away all my comfortable sleeping positions and I toss and turn for hours until I finally fall asleep. If only I could get a good restful nights sleep, my instincts tell me I’d have more energy during the day.
My extreme numbness is another story and it’s at it’s most extreme at night when I try to sleep. I wish I knew of something that could cut into the numbness, but I’ve always been told nothing will.
AnonymousOctober 24, 2009 at 5:15 pm
[QUOTE=WithHope]Thanks for sharing honestly your experiences and what has helped you through this very tough journey that we travel.
[FONT=”Book Antiqua”][COLOR=”Sienna”]And I would wholeheartedly second that. You have my total admiration. Such honestly is difficult at times, but please know it is so very much appreciated. [/COLOR][/FONT]
October 24, 2009 at 7:22 pm
You are resourceful, knowledgeable and helpful. I have learned a lot from your posts. I am awed and inspired because you are making the best of all the challenges you face.
You are the Best in the World! My Prayers and concern will always embrace you.
AnonymousOctober 27, 2009 at 3:47 am
Thanks for that Ken, Am saddened to read things are still heading in that direction for you. You may not remember me, but you kindly passed on your thoughts and experiences to me when i became another CIDPer nearly 2.5 years ago. I wish i was at least able to offer you advise or suggestions but just wanted to let you know how much i appreciated your itme in answering my questions etc. Unfortunately despite being one of the lucky ones as i was diagnoised within 2mths of symptoms and commenced on the latest pulse methlypred treatments (supported by immunosups and twice weekly / weekly ivig as well for the last 2 years) I am currently back on 1000mg iv methylpred plus all the fore mentioned due to us trialling a very gradual methylpred taper (managed to be steriod free for 8wks before i did a very rapid and scarey decline).
I admire how you mange to keep things in perspective as your body gets taken over by this harrowing condition. It is undescribable to have something and then to loose it and live without it, you are an inspiration.
Recently (3 weeks before i was again needing elbow crutches to walk and nearly unable to care for myself) I stubbornly completed my first ever half marathon – it is folks like you that got me there – as i knew i was already on my slippery slop downwards, but wasnt ready to admit it, or be robbed of my 12mths preparation to do the 21km run!! It was a hilly course on windy wet country roads, and as i tried to tell my legs to behave, every corner i came to I prepared which side to fall – should the legs not obey me!! I knew i had to run while i could – as well as for all those with this condition, that would love too if they could!! 2.17hr i made it!
Your current answer to fatigue issues will also be posted in my files, heres hoping it will never come to that but one can never be too prepared or know which way things will go with CIDP. Cyclophosphamide is also being thrown around again for me re treatment options.
All the best Ken, and heres to your current quality of life continuing with only one or two days in bed a week.
Sending you lots of strength and best wishes from my end of the world
You must be logged in to reply to this topic.