Effects of CIDP?
AnonymousApril 4, 2008 at 5:34 pm
Fatigues is just another way of spelling CIDP. Yes, there is fatigue with CIDP. The sour stomach sounds like something else besides CIDP. The pain issue varies greatly from person to person. However, there are meds to help. Again, their effectiveness seems to vary from person to person. How will it effect your work again depends on the the severity of the symptoms. I’m still teaching, but only part time. Your last question has too many variables to even attempt an answer. My wife has been very supportive, but that’s the way she has always been.
You didn’t say what type of meds you were on. Have been definitely diagnosed or are they still searching for an answer. Have you been started on IVIg. Again, each individual is different, but IVIg seems in many cases to halt or slow down the advancement of the symptoms.
Read through some of the CIDP post they may help you understand. If you have any question, just ask,
April 4, 2008 at 8:42 pm
Yes to all of the above! Kevin had a sour stomach for a good year, it has finally disapated. One suggestion would be to take Ranitadine, the generic form of zantac. If you get it from sams club it is about an 1/8 of the price. Besides being beneficil as an acid reducer, it is a hc2, (kind of like a weaker or secondary benadryl) When Kevin gets infusion we give it in conjunction with benadryl as an acid reducer for his nausea and a back up to benadryl.
You are newly dx and it will take time to figure out a treatment that works for you. Once you do this, some assemblance of normalcy will return. It won’t be perfect, but it will be the new way. In other ways, you will find new good things out that you never new existed. Kevin has gained many life changing strengths from this illness.
First there is the reality of the illness, learning about it, being sad about it, and then there is acceptance. It is just now starting to come together for us, about 18 months, and we still have a ways to go. You will get there.
I cannot comment on marriage from the patient view, but as parents of a sick child, it has affected our marriage. I get the feeling that my husband feels left out because Kevin is so dependent on me. He does not understand how hard it is for Kevin to get up in the morning and walk around. When he comes home from work, he sees Kevin playing and looking normal, he just does not understand it is not always thAT way. It causes tension. My older son rareley vents, but when he does, he says he is sick of hearing about Kevin’s illness. So yes, it does affect the family.
Regarding work, Kevin is pretty close to normal after 5 months straight of loading doses. The mornings are rough. But he is playing, so it is not a fair comparison. Others on this sight do go back to work. Some others are not as fortunate. Everyone is different, you will have to wait and see what your response to ivig or whatever treatment you get is. Time will tell. But chances are good. I said this once before, and I really do believe it. There are hundreds of members on this site, and only some post. The others must be doing good. I post because Kevin has problems with ivig AND because I have become attatched to the kind people on this sight. It gives me a great feeling to maybe give someone info that we learned the hard way. That is how everyone on this site is, they help each other. So if you have more questions, you know where to come.
Dawn Kevies mom
AnonymousApril 5, 2008 at 10:11 am
Yes, CIDP can cause fatigue in a way that nobody understands but us. I used to think, “dang, I am getting lazy…all I want to do is sit here”. Dr’s used to say fatigue wasnt a real thing. I push myself hard…I am sure way beyond limits most of the time. I am ALWAYS tired. The fatigue in my legs tho, is something I cant push. When I’ve gone too far, they just dont want to go any further and that can be scarey.
I’ve never really dealt with a “sour” stomach.
Pain is complicated for me. Sometimes I get zings and zaps in my legs or I get sharp or dull aches that travel from my toe to the side of my foot to the top of my foot….or the same with my hands…a dull ache that I describe as traveling. Sometimes my legs hurt real bad. Sometimes I have no pain at all.
CIDP doesnt much affect my work b/c I have a desk job. The fatigue can be tough to fight at times. Missing work to do ivig five days in a row can be a bother as well. I get on this forum while at work and probably shouldnt, but, some days i just need to be here. :rolleyes:
As far as the marriage…my husband is extremely supportive and understanding. He gets mad at me for not resting more…not really mad, but discouraged that I dont listen. If you dont have support with this, it would really be hard.
Andrew, Amen to your comment. 😀
You have found a good place. We all have unique stories. We all are here b/c we need each other and b/c we care.
AnonymousApril 5, 2008 at 2:36 pm
Iagree with all of you, fatigue = CIDP, I’m always tired and I always want some more hours to sleep, and my legs there is a moment that say: “no one more step” But it takes time to get usde to it and it’s a very long and hard way. On the other side, in this forum we can find hope and courage.
About marriage and family life I have no complaint, my husband and 18 year’s old son have always been by my side, helping and supporting me.
But this illness is very “personal” , everyone feel it in a different way and there are so many CIDP as many patient.
Since I discovered this forum I see CIDP with other eyes, because I don’t feel any more alone.
Thanks to all of you.
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