An update from emitch74…
AnonymousMarch 10, 2012 at 11:38 pm
It has been awhile since my last update. Hope everyone is doing well.
It has now been over 2 years since my diagnosis of CIDP and March 10th marks the 2nd anniversary since I was sent home from the hospital after a rather lengthy stay as well as a 6 week stint in a nursing home.
From the moment I was finally able to sleep in my own bed with my condition and strength improving by the day (due to the 13 plasma exchanges ), I vowed to myself that I would work my ass off in order to prevent another nightmare scenario when I relapsed and plummeted to near death at the age of 36.
Since that aforementioned faithful day, I have spent countless hours in the gym and have transformed my body in ways I could have never imagined even in a best case scenario when my neurologist gave me my official diagnosis.
At the beginning of this journey, I weighed a robust [and quite embarrassing] 418 lbs, which certainly didn’t make things easy during rehab. But with ridiculous hard work on the cardio machines I lost a grand total of 210 lbs over a span of 12 months and hit my goal weight of 208 lbs. No tricks. No pills. No surgeries. Just bust ass work and completely changing my diet.
In the 6 months since I achieved my weight loss goal, I have continued my quest to get in the best possible shape I can and have really hit the weight room hard. I had never really spent much time working out regularly when I was younger (I am now 38 yrs old) so my body is just exploding from head to toe and I’m seeing enormous gains at the gym and definition every time I look in the mirror. It’s a good feeling and a real sense of accomplishment. Much to my surprise, weight lifting has really become a passion and I simply can’t wait to get to the gym on days I do my lifts.
Since my last relapse from December of 2009 to February of 2010, I have really made a point in strengthening my legs with a brutal regimen because of my lack of mobility and the simple fact that I couldn’t stand up without a lot of help. As a result, I can now squat 470 lbs and press 1000 lbs on the incline leg press! Even the hardcore lifters who look the Incredible Hulk take notice of my success, which truly boggles my mind.
Never in my wildest dreams could I have foreseen this kind of progress 2 years ago. Both my neurologist and my GP have told me that I’ve made one of the most dramatic turnarounds they’ve seen in their careers. But I’m not going to stop here because I am having too much fun.
One month ago, I joined a summer baseball league so now I am conditioning myself for a full season of baseball. I can’t wait.
The moral of the story is this – CIDP be damned. Right now, I am in the best shape of my life despite my condition and feel absolutely spectacular. There is more energy oozing out of my pores than I know what to do with. I have no intention of slowing down one iota.
Truth be told, I’m anything but naïve. I realize all too well the CIDP reality sledgehammer could knock me upside the head at a moment’s notice with another relapse and send me reeling again. But until it does, I am going to continue to push myself every day and enjoy myself.
Here’s hoping that my good luck the last two years will rub off on all of my fellow CIDP/GBS sufferers.
March 11, 2012 at 1:03 am
That’s a terrific story of recovery! I lost 40 lbs just wasting away in the hospital, and thought that was something. Now the problem is just to get rid of the ten I put back on. After more than a year of recovery, I’m in pretty good shape, but I can’t imagine playing baseball. The legs just aren’t up to it.
Are taking any drugs for maintenance?
March 11, 2012 at 3:03 am
That’s great news!!! So happy for you!!!! I long for the day I can go back to the gym!!! I am also curious if you are continuing to do Plasma exchange or IVIG/any other treatments!?! Had the CIDP effected your whole body or only a certain region? Congrats, it’s great to hear success stories!!!!
March 11, 2012 at 3:54 am
glad to see you back on the board e-mitch. your success story was one that kept me positive when i was first diagnosed–for some reason whatever i was searching, it came up 🙂 I am glad you are continuing to do well. Did you feel improvement right away with the plasma exchange–or not until after you had the 13. I recently tried a series of 5, didnt notice significant improvement and was wondering whether or not it would be worthwhile to try more?
Sounds like the intense exercise regimen hasn’t slowed your healing or improvement—there seems to be so much contraversy between rest verses exercise for nerve healing –and finding that perfect balance???
It is great to hear of success stories!!!!
AnonymousMarch 11, 2012 at 5:33 am
Thanks all for the kind words and encouragement.
My “maintenance drug” is Cellcept (500mg in AM and 1000mg in PM). I am receiving no other treatments at this time and haven’t since June of 2010.
My CIDP affected my entire body from the neck down. I could barely move my legs at all and my arms were so weak that I couldn’t pick up a can of pop next to my dinner tray.
I am truly humbled to hear that my story helped keep you positive while dealing with your own condition and the struggles that come with it. In my own experience, staying positive didn’t work for me until I started getting positive results. The staff at both the nursing home and the hospital both swore that I was satan’s spawn because I was a real pain in the ass when my condition was plummeting by the day. I admire people who found ways to stay positive despite not getting the results they wanted because I was unable to do it myself.
To answer your question regarding my PE treatments, I started to feel a significant difference in my strength after the 2nd treatment. From that point on, I haven’t had a single setback in 2 years.
I was always told by PTs and my neuro that I shouldn’t push myself too hard with this condition but I never listened to them. My transformation wouldn’t have been nearly this dramatic if I had simply heeded their advice.
Thank you guys again for the kind words.
March 11, 2012 at 1:55 pm
Wow- what an inspiring story even without CIDP ! Thank you so much for giving hope and I am wondering if you would feel worse with your workouts ( i.e. more fatigue, cramping, tingling etc) initially and how did you manage this? If so did the initial worsening get better as you got into better shape? I also have been told not to push too hard and because I get a lot of symptoms when I do exercise I have followed this advice but now I am questioning . Thanks for any advice !
AnonymousMarch 12, 2012 at 1:32 am
Initially, I did experience a lot of fatigue during inpatient rehab [as well as outpatient rehab after I was sent home]. Taking naps between rehab sessions became part of my daily routine just like everything else.
Obviously, tipping the scales at 400+ lbs clearly demonstrated that I was in terrible shape to begin with so I cannot say for certain if it was the CIDP that was at least partially to blame for such fatigue or was it simply because I was too fat and out of shape. Let’s call a spade a spade.
The only residuals I experience now is minor tingling in my legs that tends to come and go. It’s more of an annoyance than any real hindrance though and for the lost part I’ve learned to just ignore it. I just approached my rehab (and now my workouts) with no regard for my condition whatsoever. The thought of slowing it down a bit because I have CIDP is not something that even enters my mind.
If you’ve been reading the stories of others who also suffer from this condition, you know by now the cliché that everybody’s body responds differently with CIDP [and GBS for that matter]. I would never suggest that others should take the very same approach with their rehab/workouts because I would feel terrible if someone heeded my advice and pushed himself/herself too hard, resulting in a setback. What worked for me may not necessarily work for you and vice versa.
My goal once I regained enough strength back to live a normal life was to lose as much weight and get into the best shape I possibly can so that my body would be able to handle another relapse far better than it did the last time. I certainly never expected to drop half my body weight and have the ability to squat 450+ lbs. But the faster those numbers dropped on my scale the harder I pushed myself.
Last summer, I used every kind of cardio machine imaginable (treadmill, stair climber, bike, arc trainer, elliptical, Precor AMT, running outside, etc. etc.) and my legs began forming into tree trunks and became Incredible Hulk strong. I did do quite a bit of lifting as well but getting down to my ultimate goal weight was my first priority and lifting was more or less put on the back burner. I was doing 2-3 hrs of cardio a day and those around me thought I was insane. They were probably right. But I was determined to achieve my goal and never took time off to rest. I went on vacation to Missouri to visit a friend of mine last June and still worked out 5 days that week.
I’ve essentially taken my game to another level since lifting is now my #1 priority and seeing definition all over from head to toe has quickly turned lifting into a passion of mine.
I don’t know why I don’t experience the residuals on a day to day basis that most other members of this forum do but I like to think that my approach and determination to work my ass off as hard as I can and continuing to eat healthy has a lot to do with it.
Hope my long winded response helps.
AnonymousMarch 12, 2012 at 1:44 am
I find it quite humbling to hear others claim to be inspired by my story so I appreciate that.
I didn’t do any of this to inspire anyone. I did it because I was sick and tired of being confined to a bed for 7 months and unable to wipe my own ass. I’ll be damned if that’s going to happen to me again.
My neurologist is also an extremely arrogant SOB and his attitude towards me when my health was deteriorating really helped fuel the fire in my belly to prove him wrong.
Quite frankly, I don’t often post updates about me because I see what others have to go though on a day to day basis just to live a normal life. I just don’t want to give others any kind of false hope or give people the impression that I’m beating my chest and bragging because I know this thing can hit me again at any time.
Take care and hope all is well on your end.
March 12, 2012 at 4:02 am
Emitch – I think your story is a great one & should be shared! I think it’s good to inspire others & let them know that people CAN & DO get better! I think it’s easy to feel hopeless with this disease. When you are in pain, it’s difficult to imagine getting better. I think we need more stories like yours to remind us all, even with CIDP, you can still live a nearly “normal” life. And, it DOES get better!
My daughter was 4 when she was dx’d with CIDP. She’s doing things we were told she probably wouldn’t be able to do. We try to live ours lives as normal as possible. Our motto is “We have CIDP – CIDP does NOT have us”.
March 12, 2012 at 11:58 am
Thanks for the reply it does help! I was lucky that when I was initially diagnosed and hospitalized with CIDP ( initially thought to be GBS) that I was in good shape , muscular and a good weight- the neurologists repeatedly told me that If I were heavy or out of shape my recovery would have been much harder which makes me even more in awe of your accomplishment. I do think that I struggle with knowing what is residuals vs active disease symptoms – I have noticed that when I am more active I initially feel worse but if I am consistent for a few days I actually start to get stronger and feel better so I think I may just need to push through that – I have trained for endurance events but I swear that CIDP is the hardest endurance event I have ever experienced ! Thanks again for sharing your story
AnonymousMarch 12, 2012 at 8:31 pm
You weren’t “lucky” for being in good shape when CIDP hit you. Don’t short change yourself. You earned your “luck” by doing a helluva lot of hard work and being dedicated to living an active and healthy lifestyle and I give you all the credit in the world for that.
I kick myself now that I didn’t take my health a lot more seriously before my diagnosis, and unfortunately, it took a devastating condition for me to change my lifestyle.
Two years ago, I couldn’t imagine going to the gym 5 days a week. I would have preferred to do just about anything else but get off my ass and work up a sweat. Now, I can’t imagine NOT going to the gym 5 days a week. I’d be a fool to stop doing what has put me in this position.
March 13, 2012 at 2:50 am
your story sounds like mine shellbones–i also am constantly questioning whether im getting better, worse,or just fatigue from overdoing it.
Did you get increased numbness with more exercise during your recovery e-mitch? I find that numbness and fatigue hit me the day after i exercise.
March 13, 2012 at 1:30 pm
e -mitch ,
thank you for the kind words and your inspiring story. Have you ever thought of going to the media with your story? I see weight loss stories all the time on various morning news shows like good morning america but rarely a story like yours! Few people have ever heard of CIDP much less any understanding of what it means – again I thank you for sharing your story and I know you have already inspired many right here on this forum.
Lori- Although our individual stories are unique I see more similarities than differences as I read this forum. I am going to try and get in better shape and I will report my experiences.
AnonymousMarch 13, 2012 at 8:26 pm
And thank you for the kind words. You’re right. I have never met anyone who had actually heard of CIDP. Hell, aside from the doctors, 95% of the hospital staff on the neurological floor had never heard of it.
Truthfully, no, I have never thought of going to the media with my story. After I regained most of my strength, I was asked by the staff at the hospital/rehab unit for an interview and had my picture taken for their newsletter because they voted my recovery as their biggest success story of 2010. That was about a year and a half ago and before I lost a single pound.
It’s funny because those people all HATED me when my condition was deteriorating and my neurologist refused to run any tests to see why my health was plummeting (I was originally diagnosed with GBS). I’m not going to lie, I was a real pain in the ass and cursing out the staff was a daily occurrence.
They got the impression that I didn’t want to work hard and that wasn’t the problem. I was losing strength and having increased numbness and my attitude reflected my deterioration. So I was not an easy person to be around at all. Like I said in the original post, they all thought I was Satan’s spawn.
How do they react to me now? They LOVE me. When I go to the hospital for my twice a year blood draw, I usually stop on the rehab unit to say hello and they treat me like I’m George Clooney on the red carpet. Lots of ooooohs and ahhhhhhs – everything except the flash bulbs popping in every direction.
I try to stay humble knowing this crap can come back and bite me at any time. I know what kind of obstacles I’ve had to overcome so I guess I don’t really feel the need to broadcast it.
March 14, 2012 at 1:32 am
emitch, my experience was similar to yours in some important respects. I, too, was first diagnosed with GBS, but this was changed to CIDP. This is not unusual for cases with initial presentation similar to GBS. I, too, was moved to rehab while my condition was still deteriorating, which caused some problems with therapists who did not understand the disease and its stages. Fortunately, for me, this stage was short-lived. I don’t think anyone hated me (not many, anyway). I had my daughter as my advocate, armed with a copy of Parry and Steinberg, and an excellent neurologist who set the therapists on the right path. Then the situation was resolved when I went back in the acute hospital with pneumonia and completely crashed, making the futility of rehab apparent to all. Then came plasma exchange, and the beginning of recovery. Once I could feel my motor function returning, I started giving rehab therapy everything I could muster, and recovery of upper body strength was rapid. Recovery of lower limbs was much slower, yet fast enough to satisfy everyone. Just last week, after about a year and a half of recovery, I started going out without my cane. (I haven’t been using it indoors for months.)
It is true that medical people of all sorts love to see people recover, especially from serious illnesses.
Your experience is also consistent with my view that, at least for CIDP patients who crash, the more plasma exchange treatments, the better (I had nine).
You must be logged in to reply to this topic.