AnonymousJuly 31, 2008 at 12:08 pm
[COLOR=”Blue”][SIZE=”3″][FONT=”Comic Sans MS”]Hello all. It’s been quite a while since I posted my story (probably 2 months) but I came back with some good news!:)
For a quick recap – I’m 33 now and I was diagnosed with CIDP when I was 25 years old. From the time I started having my symptoms to the time I was diagnosed was very short, about 6 weeks. I consider this to be the reason I had a good outcome. When my regular doctor couldn’t figure out what was wrong he was able to get me an immediate appointment with a neurologist at the UW Medical Center. My doc (Dr. Krause-he rocks!) was great because he explained the CIDP in english and gave me lots of good info. He immediately put me on prednisone (60mg/day). I ended up taking this drug for about 3 1/2 years – we reduced the amount very slowly over this time period. Once I was off the pred, I felt really good. It has taken me a long time to get my muscles back in good shape but I sure do appreciate my body more than I did before!
Fast forward to more recently. Last winter I started not feeling very good. Tired all the time and kind of weak. I didn’t notice any numbing or anything like I did before. So in the spring I decided I probably better go back and visit my neurologist whom I hadn’t been to see in 4 years. I made my appointment and a few weeks later I visited UW Medical again. He ran the usual reflex tests and I had to walk on my heels and stand up from a crouching position, blah blah blah. He looked back on notes from my previous illness and said I was in much better condition than when I was sick before so he wasn’t sure why I wasn’t feeling well. We set up an appointment to do an electro…..I can never remember what that test is called!!!! I came back a week later and he ran that super fun test where they poke you with needles and shock you to test your muscles. It was great :confused: ……if I ever have to do that test again it will be too soon! 😮 Needless to say the test came back very positively. Not only am I not suffering from any current issues of CIDP but I have zero residual damage from my previous bought with CIDP.
So you may be asking yourself (as I did) what the heck was wrong with this girl that she was feeling so bleh all winter. My husband and I talked about it and we came up with a few things:
First I increased my gym use quite a bit last winter and I think for one, I over did it. I read a story about over training which had a check off list of symptoms to tell if you’ve overtrained…..I had 7 out of 10 symptoms! I was trying to get in good shape for waterskiing this season and I simply over did it. I don’t think this is due to CIDP because as my doc said, I have no left over damage from before. Anyone can over train, you have to listen to your body and you can only do what it will let you! I need to build back up slowly……Rome wasn’t built in a day!
Second we had a very stressful winter. My husband was spending about 3 -4 hours a day on the road getting too and from work. Our gas bill was killing us and we were having troubles buying food and paying the bills! He’s since found a job that’s a 10 minute commute and is much happier at his new place of business (yeah!!!)
Third – Oh my god we need a new bed! Our bed is in pretty bad shape and we both have all these aches and pains when we wake up in the morning. Sometimes it’s so umcomfortable that it wakes me up in the middle of the night! We’re trying to save money to buy a Tempurpedic bed (our dream bed) but I don’t know how much longer we’ll make it on this one. We’d probably be better off on our blow up camping mattress!
So we surmised that all of these things just basically built up and caused me enough stress that I was fatigued, grumpy and just all around didn’t feel good. Stress can really take it’s toll on a body! Not to mention I was so tired from not sleeping through the night (due to old bed and stress).
Anyways – I wanted to share this so people out there know that there is hope! I can’t believe how good I feel. I skied in my very first sanctioned water skiiing tournament this summer! I have a couple more coming up this weekend and I’m so ready! Waterskiing (on a slalom ski) uses every muscle in your body and can really work you over. I’m so blessed and so happy I’m able to do this. I encourage everyone to have some kind of goal, something they can look forward too. Waterskiing is my thing I look forward too! I’m going to keep doing it as long as my body will let me! Then once I can’t do it, I can still be a boat judge or a tournament driver.
Thank you for taking the time to read my story.;) [/FONT][/SIZE][/COLOR]
AnonymousJuly 31, 2008 at 3:10 pm
Very Happy for you Lilly! So glad you are doing much better and I hope you continue to stay well. We just replaced our bed also and it lays much better. Our other one got to the point it caused me pain laying in. So I hope you get that new bed soon! Congrats on feeling better!
July 31, 2008 at 6:37 pm
What wonderful news. I am so happy for you! I have an 11 y/o boy who was dx at ten. It has been 22 months and I am holding out hope for an outcome like yours. You cannot imagine the joy I am feeling for you. I pray that all that you have planned for your life works out exactly as you envision it. I hope you get that tempurpeadic!!! Best wishes for the rest of your life!
Dawn Kevies mom
August 1, 2008 at 10:04 pm
Wow, a complete recovery, I love the sound of that. I’m so looking forward that possiblity. I’m 9+ months into my first CIDP nightmare and it is getting worse every day.
3.5 years on Prednisone that seems exceptionally long. Did it primarily help with your energy level or did it actually help you use your muscles?
I am the designated ski boat driver, so I can sure appreciate what it takes to slalom ski, but to do it competitively is awsome coming from CIDP. Super congrats on your tremendous achievement !
AnonymousAugust 11, 2008 at 5:05 pm
[FONT=”Comic Sans MS”][SIZE=”3″][COLOR=”Blue”]Hey zbrd – thanks for the post! It was kind of long to be on the prednisone but only about 6 months of that was the high dosage. We spent the rest of that time tapering it off every couple months ever so slowly. It did actually help me use my muscles. I felt a pretty quick recovery from that tingling feeling and then it took about 2 months to get all feeling back and then the strength was just something that slowly returned. I didn’t do a lot as far as exercising until I had been on it for about a year and a half. All of the side effects I had are totally reversed so I feel great. I had pretty minimal side effects though: slight vision loss (totally recovered now), puffy cheeks (drinking lots of water and eating low sodium foods helped keep this down a bit), sleep loss (my house was super clean), tons of energy except the week after my dose was decreased (that was the hardest-for about a week after a decrease all I would want to do was nap cuz my body was adjusting).
I now exercise regulary….mostly running, walking and resistance weight training. I have to if I want to keep skiing and also it just makes me feel generally better.
I’m glad to hear you’re a ski boat driver. I also like driving and figured that if the day came I couldn’t ski then that would be my job!:) I skied in a tournament a couple weekends ago and had a blast!
Good luck with your treatment and I really hope they can find something that works for you. Thank you so much for your response![/COLOR][/SIZE][/FONT]
AnonymousAugust 12, 2008 at 12:29 am
It is so nice to hear some positives. I am the caregiver for my husband and sometimes I think he is expecting a permanent recovery and I worry he will be disappointed. I do have faith but it was at least 2 years before we dx it ourselves without knowing for sure if that was it: cidp.We had trouble with doctors not knowing or not taking it seriously or they just did not seem to know anything.
But again it is nice to hear this. For the first time my husband has now gone on plasmaphersis and he is no longer getting tremors in his legs which means he is not falling now. He is still fighting the balance problem and is using the cane but the falling got to the point of an every day occurance. He is sometimes troubled with sleeping and has been complaining about his feet hurting. Was this way in the beginning only. We are hoping that it means his feet are now getting better.
We shall see.
AnonymousAugust 12, 2008 at 2:20 am
I just love hearing the good news and will continue to pray that things get better.I am still one suffering but hopefully not for long. My nervous system might not be getting better but when I see positive outcomes, it gives me hope. And I really need that hope right now! Joan! Glad to hear that you saw your grandson and the family helped out some and so happy that you got in some golfing. :0) You need that time for yourself a bit! I will keep you in my prayers too!
August 24, 2010 at 9:57 pm
lilly–i know this is a super old post im replying to–but i have been recently started on high dose prednisone for cidp ( you remember the sleepless nights lol–so here i am reading old posts) im 18 days into the prednisone and feeling weaker, even though i have periods where i feel energized and am getting so much done–at the same time i feel weaker and feel that walking is coming harder–just wondering if you experienced any of this during your recovery with the pred. I keep second guessing myself to whether or nor its working and have been searching through posts of others who have tried it to see how it made them feel. If youre still on the board and get this message please drop me a note…Lori
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