Hello I’m new
AnonymousMay 4, 2007 at 9:29 am
Hi, my name is Lourdes and I am new in this forum, I hadn’t found any place where I could talk about my problem until I found this site. I have been reading some other people’s posts and I’ve found out my problem is minimal compared to other’s. I’ m Spanish, from the Canary Islands, a very little ones in the middle of the Atalntic Ocean, so sorry if I make any mistakes…
I was dx with CIDP in September, 2006 after many months of slowly progressing weakness in all extremities but first in September 2005, I was dx with GBS. In August 2006 I became so weak within two month that I couldn’t walk, lift anything, and could not use the bathroom without help. It was a nightmare. I fall down three times and almost break my head.
In September I got in the hospital and I received IVIG during five days, and it wasn’t very nice, but on the other hand I started to improve day by day, I couldn’t believe it !!!!. Then in December I started going back again and I had my first relapsed, again it happened in March and at that very moment I’m having another one, in fact next week I’m having a new session of IVIG but only for two days.
I don’t know what to think about, what I really know is that I don’t want to see my self again as in August and If I have to have IGIV session every two month, then, go ahead with it!!!! I always think that the last time is the last one, but until now I’ve been mistaken.
When I get my IGIV dose I feel perfectly, I can do almost every thing, of course always looking for having, rest, rest, and rest. But suddenly I started feeling very tired and weakness in all extremities and come back to the beginning.
It’s taking me a while to learn my limits. People see me “normal” and sometime I feel tired of explaining how I really fell. My family has been a very important support, they understand me perfectly and know how I really feel.
I’m happy to know I’m not alone. Sorry again for my english
AnonymousMay 4, 2007 at 9:57 am
Welcome to your new family, where we feel what you feel. Give others time to answer your post. It doesn’t mean that we don’t care when it takes a few days. WE DO CARE and will help as much as we can. I have had CIDP for nine years now and I am one of the people who was severly damaged. You may need to have the IVIG’s on a regular basis. Some of us have them every two weeks, some have them three days in a row, then skip a week, some of us can go for a month or longer before we need them again. The next time you have an IVIG, start to keep a diary so you know how long it takes before you feel weak again. This will help you learn how often you will need them. Nobody likes getting the IVIG’s, but if it helps, you do it. I hope you have a good doctor you can talk to and I hope he knows about CIDP and if he doesn’t know too much, a good doctor will want to learn. Tell your doctor how you feel, this must come from you. He can’t look at you and know what you are feeling.
Come here to your new family to talk as many times as you want to. Here is a friendship rose for you.
AnonymousMay 4, 2007 at 10:49 am
Thanks, for your welcoming and for the rose. I’m keeping a diary, since the first time I needed IGIV treatment, until now it has been necesary every two month more or less, but I have to ask for it every time, and my doctor doesn’t sometimes, like very much, it seems as she had to pay it from her pocket.
In fact, sometimes I think she doesn’t know what I’m talking about, but I live in a very little island and although we have a very good public hospital there are no many specialist. The last January I went to Madrid to a better private clinic and they told me that here were doing the best. She knows about CIDP, but itsn’t a person who you can talk with. For expample , last year in June she told me that it was only my imagination, and I was obsessed, and finally I finish in a wheel chair. Anyway, now whenever I need, I call her and ask with conviction for my IGIV dose and there is no more problem at all.
AnonymousMay 4, 2007 at 12:58 pm
I’m sorry for your situation but glad you found this forum. The people here are very supportive and have lots of good information.
I’ve had CIDP for more than 2 years now, but was only diagnosed last July. At first the weakness was manageable, but by the time I was finally treated, I was so weak I was almost disabled — could barely walk, function, bathe, etc. Like you, the IVIG worked great for me. After the first treatment (3 doses in hospital), my doctor prescribed 1 infusion every 4 weeks. Since symptoms didn’t return, I went to every 5 weeks. Now, I’m trying 6 weeks. Today is 5 weeks and I’m OK but starting to feel slight symptoms, so I’ll see how the next week goes. If I get too weak, I’ll go back to 5 week interval.
It sounds like you’re not getting the IVIG often enough if you’re getting really weak inbetween. Maybe your doctor would be willing to schedule you for regular treatments, closer together, then see if you can go longer between doses.
Even with the IVIG, I still get tired easily and can’t do as much as I did before. It’s not easy. I doubt I’ll ever be able to stop getting the IVIG, but, like you said, it’s worth it to be able to be almost “perfect” again.
Good luck with your treatment and stay strong!
AnonymousMay 4, 2007 at 2:01 pm
Thanks for your word Caryn, it makes me feel much better, because sometimes I feel really alone, though I talk with a lot of friends about CIDP I can’t share things like you explain about to be tired easily even with the IVIG and hope to stop getting it someday, and the most important, to admit that my life will be never the same. I mean, is difficult to recognise that trere are a lot of things that maybe I’ll never be able to do again, things that I enjoyed with. Of course I can do any other ones, but…..
To share this feelings with peple that really understand what I feel es a big step.
Thanks a lot.
AnonymousMay 4, 2007 at 5:32 pm
I completely understand how you are feeling. Sometimes I have a hard time accepting that my life will never be the same. I got CIDP almost 4 years ago at the age of 20, and have been very sick until about a month ago. I have had to drop out of college, quit a photography job I loved, and most of all have lost a lot of friends because they are young and it scares them to see me go through this, so most of them have ran from it. I have always been into sports, I played soccer in college, and realistically I will never play again. I have lost a lot, but in return I have gained a new appreciation of the people who are still part of my life, and a new outlook on life.
Welcome, and I wish you the best,
AnonymousMay 4, 2007 at 6:42 pm
Hi Lourdes – Welcome! When I read your post, it was like reading my own. The timeframe is exact. However, I have recurred at 64 days (after first IVIG), then 36 days, then 33 days, then 26 days, and my last was 21 days. Although my symptoms are recurring closer together, each time I get IVIG I bounce back quicker and stronger until the next time. My suggestion to you is at the first symptom, call your dr. and get set up for IVIG. That miracle juice is the only thing that keeps me functioning and, unlike some other folks, I am always happy to go in for my IVIG. Because I know I’ll be “normal” afterwards. I have decided that I am going on with my life as usual, just at a slower pace and getting more rest. I don’t dwell on what I can’t do, but try to face challenges creatively and have called on my 10 yr. old neighbor to help do some of the really challenging chores. Her mom is delighted that her daughter is learning to vacuum, pump gas, and pick up pine cones from my yard! Let us know how you are doing. Your English is just fine! Good luck and good health!
AnonymousMay 5, 2007 at 6:53 am
Well, I’m doing quite well, at the begining I didn’t stop crying, but nowadays I’m very happy, although as everybody I have bad days too.
I can’t complaint, I’ve been able to work again since two months ago, all my collegues are helping me an encouragin me, and I don’t have any problem with the days I have to get my IGIV, my boss is always asking me how I’m feeling and telling to takes things easily, I’ve learned to do things in another way, more patiently, and having much more rest.
I’ve learned who are my trustly friend, and of course I’m discovering many others hobbies I can do. What I’m trying it’s that when I feel “perfect”, I go ahead with all the things I used to do: going to the beach, playing golf, walking along the beach, always having rest as much as I can, an when the weekness came back again, well that’s life¡¡¡¡ I stop doing them , and start doing another ones, like write, read, cooking (I love it) and of course start asking for my IGIV dose to start again the circle. But really I don’t feel sad for it. I’ve learned to ask for help, to my family and my friends, what they are doing now is that when I’m geting my IGIV they spent a couple of hours with me at the hospital, bring me a coffe, some buscuits, and so time goes faster.
But the only thing I can’t go ahead with it it’s not knowing when is this finishing, because I always think that this will end some day, but reading your post I’m realising that maybe it could never happen. How do you do it? 😮
May 5, 2007 at 7:50 am
Welcome! I’ve had the CIDP for over 4 years now. It’s been flustrating and it’s really hard to keep a positive attitude on somedays. I ‘ve got a schedule of getting the infusion ever 6 weeks and it seems to be keeping it under control. I’ve learned to just take one day at a time, if I can’t finish a project in one day and don’t feel up to it the next I figure it will be there when I do feel better or I can always ask for help. Worrying about tomorrow takes too much energy. Love today for what it holds and tomorrow will take care of itself.
AnonymousMay 7, 2007 at 4:32 pm
The idea of having to deal with this for the rest of my life can be overwhelming. Nobody wants to get IVIG treatments and deal with the fatigue and other symptoms. But I keep reminding myself how terrible it was before I got diagnosed and treated, and how I am now doesn’t seem so bad. Just keep taking one day at a time like you have been doing.
AnonymousMay 7, 2007 at 11:04 pm
I also welcome you to this site. I have had C I D P for 4 years. Got weak in the feet and by 2 months later was in a wheel chair. Was in and out of a rehab center several times, and finally went to a teaching Hospital in Philladelphia where they got the meds straight and got me back on my feet. I was gone from my home over 5 months. After I was home I continued to improve for a year or so till I relapsed and have slowly gotten more and more exausted. I have strength, but low energy. Sometimes I don’t get on to this board for days. I welcome you and pray for your healing.
May 12, 2007 at 7:56 pm
Hello Lourdes. Hello to all the friends on this forum.
My name is Nancy and I live in Italy. I have been a member of this forum but haven’t posted too many of my thoughts and pains because sometimes it’s hard to express what we are all going through. I always find comfort and support just by reading the messages and thoughts of other members because they are similar to mine. It helps so much! I was diagnosed with CIDP in february 2006. It changed my life, even though I had already gone through the battle of GBS at age 20. Like you wrote, it is hard to explain to people what we feel, how much we suffer and our physical limits because they see no “physical outer damage”… we look “normal”. At times I am afraid of crowded places because of my weakness. I have IVIG treatments every 2 months; right after the treatment I need at least 10 days to recover from mild headaches and I also very, very weak! But afterwards I feel stronger and am able to work….’til the next IVIG 😉
I have learned to take one day at a time… we have ups and downs… appreciate the “ups” and fight the “downs” :rolleyes:
Good luck to all of us 🙂
AnonymousMay 14, 2007 at 6:59 am
Thank you to all of you for having posted. I’m feeling really comfortable in this site, because I’ve found people who understand really how I feel.
I’m having also my IGIV dose every two month. Last week I had the last, and also takes three or four days, to feel really good. Today I’m very fine and I’m enjoining.
I’ve been reading, along these days many of your posts, and I feel very comforted, because I’ve been having the same symptoms but I thought I was going obsessed because my doctor doesn’t explain too much to me, and I have had to learn many things alone and experimenting with myself. Now when I hear about pain, weakness, fatigue, need to sleep hours and hours, rest, etc, I feel as a “normal” person. I thought, I was the only one who felt so badly after having IGIV but now I realise that after all it isn’t so bad.
Well thank you again for being there.
AnonymousMay 19, 2007 at 10:17 am
It is amazing how much better I feel when I come to this site and feel surrounded by friends. I hope that is what you are experiencing. So many people here can relate to your situation and offer support so easily. Like I posted elsewhere, my meds just treat the symptoms, the support here treats me. There is a big difference there. One of my biggest problems was isolation. Not only did no one around me have any idea what CIDP was, I can’t leave the house due to the mobility and motion sensitivity issues. When I do go out, everyone feels guilty that I dragged myself out. Coming to this forum discussion, suddenly there was a roomful of angels. People CAN be angels if you give them a chance. I hope you keep finding what you need here. God bless.
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