IVIG and maintenance of CIDP
November 10, 2011 at 2:25 pm
I feel worse and worse as I get closer to the IVIG dose day. I currently get 40grams of IVIG every 21 days (I am a 120 pound female). I was trying to go to 40 grams every 30 days but i noticed the month after I went to 30 days I started to feel icky at around 18 days. I really needed my IVIG. So my doctor put me back to every 21 days for now to see if I can maintain feeling good continuously. So far, so good. I am at about 12 days and feeling almost what would be my new normal. I feel pretty normal throughout the day when I am at work because I am busy and not dwelling on any symptoms. But every night when I lay down finally for bed my feet feel ‘creepy-crawly’ for about 20minutes, and I get a few jerks of my legs muscles sometimes too. But after about 20 minutes everything settles down and I feel normal again for the rest of the night. Upon waking up my feel feel normal but slowly I get some symptoms returning by end of day again (mostly mild tingling and creepy-crawly calves). This seems to be a pattern for me so I think this is just how I will be from now on. I can live with this as long as I don’t start to see any worsning of my symptoms. My nurse said that having these symptoms at night does not mean my body is causing more nerve damage just that my disease is still active and I am taxing my nurves and muscles during the day and they go wild when I finally give them a rest. Does this sound right? I get worried that I am still having new damage but i don’t see any muscle weakness or dropped foot. Should I be worried that I have mild symptoms at night every day. No real pain, just icky feelings in my legs.
AnonymousNovember 10, 2011 at 6:18 pm
I have the same feelings as you do.
The pain is managable during the day but when I go to bed look out.
My feet and legs are very painful, crawly and just not good.
I take nortriptyline at night to help with the nerve pain and often sleep with a warm rice bag.
I get the pain every time I get out of bed and then again in the morning.
I can’t offer any suggestions but wanted to let you know you are not alone with this battle!
Hang in there,
AnonymousNovember 11, 2011 at 1:30 am
CBirdy ~ What you describe is similar to what I go through each day. End of day my feet and lower legs are especially affected – its more inflammation mixed with neuro-pain and muscle pain. First half hour in bed is uncomfortable and then things seem to mellow out. I just hate waking up to CIDP.
I work from my home; mostly sedentary, so I get up and move around every hour or so on my crutches. When I do go out with my electric wheelchair, I usually bundle my tasks and come home with increased symptoms throughout. I try not to go out two days in a row.
We all find our personal new normal – but I’m still optimistic that one day I’ll get better and better. Like you, staying busy takes my mind off the weirdness and is part of my therapy. I really feel best – if it can be called that – when I accomplish a difficult task. Maybe its the endorphins of success mixed with a dose of self-worth.. ??
I get IVIG each 6 weeks and often the last week is a long one. Because IVIG works for me, I (unfortunately) look forward to it.
AnonymousNovember 13, 2011 at 3:59 pm
Big Tree said: “Because IVIG works for me, I (unfortunately) look forward to it.”
So true. My doctor lets me schedule my IVIG according to how I feel. He said, “After all, no one gets up in the morning, and says, ‘I would sure like to go get an infusion today.’ ” I didn’t say anything, but I felt like telling him, “You have no idea how wrong you are. On a bad day, you would really, really like to go get a IVIG treatment.”
November 14, 2011 at 9:30 am
What does it mean when you are feeling the creepy-crawly sensation at night? Doe that sensation mean that you are having more nerve damage or is it just a symptom of living with IVIG and a symptom of your nerves trying to calm down after a long day on your feet? I get anxiety at night when I feel this sensation because I start to wonder if my immune system is actively attacking my mylin sheath again and causing more and more damage. But then it settles down and goes away for most of the night so I calm down and finally fall asleep. I would assume if I was getting more damage the feeling would not calm down and go away after getting off my feet for a while and I would not feel good again in the morning. More damage would act different and I would have pain upon waking and all during the day wouldn’t I? I am still fairly new to CIDP. Only diagnosed about 11 months ago. Still trying to find a new normal and learn how to get along without freaking out over every little twitch or sensation. But I get so scared sometimes when I feel funny or have pain. Sometimes I think the anxiety I feel is worse than the actual pain and sensations in my legs. The unknown as to how I will be 2, 3 or even 5 years down the way is what really scares me. I am working full time, taking care of my 8 year old daugher. Very busy with being a wife and mother that I don’t know what I would do if I all the sudden was bed ridden or had to use a wheel chair. I can’t lose my job as I carry the insurance and I have been getting IVIG every three weeks. I look at the price when I get the bill and it is $16,000! I could never cover these infusions without good insurance. How do people who lose their jobs and end up disabled deal with paying for the IVIG? I have so much anxiety lately that I just start to cry for no reason when I am alone and no one can see me. I have been short with my daughter lately because I am so scared and I feel alone. My hubby really doesn’t understand my condition and just kind of turns away when I bring up any symptoms or talk about how I feel. He isn’t mean, he just doesn’t deal well with this stuff so he doesn’t address it. I feel alone a lot with my disease. 🙁
AnonymousNovember 14, 2011 at 11:36 am
[QUOTE=chirpybirdy] I feel alone a lot with my disease. :([/QUOTE]
Your post brought tears to my eyes. You’re not alone! On some levels I can relate, however, as I had GBS, my experience was very different.
You’re in my thoughts and prayers.
Stay strong and encouraged!
AnonymousNovember 14, 2011 at 11:37 am
Chirpy – What brand of IVIG do you receive? Some IVIG manufacturers have programs available to people, if they lose their insurance, that will help pay for their treatments.
Emily receives Gammguard & is part of the Gardian program. Here is a link: [url]http://www.gammagardliquid.com/professional-resources/gardian.html[/url]
If you receive another brand contacting the manufacturer would be a good idea to see if they have a program in place.
I also wanted to suggest that you might want to think about seeing a therapist. Not because you are crazy or anything but because it’s really difficult to deal with being the one to carry the health insurance & the stress of trying to be a good mom & wife at the same time that you are dealing with your health issues. I think it might help you to talk to someone to help you work through that.
AnonymousNovember 14, 2011 at 11:53 am
I really believe that what you are feeling at night is just your body’s reaction to having CIDP, not the nerves being damaged more. If they were being damaged, you would wake up with less function, like more difficulty walking? Maybe you need some sort of anti-anxiety pill to help you relax & quit worrying so much about what might happen down the road. If the IVIG is working for you fairly well at 21 days, there is no reason to suspect that you will be in a wheelchair or bedridden down the road. Some here have been on an IVIG routine for years with no changes. We just can’t live our lives with a “what if” attitude, or we would all go crazy, & I mean that in a nice way.
November 14, 2011 at 11:57 am
I agree. I need to get on an anti anxiety drug. But it is just one more doctor appointment to add to my list of doctors that I just don’t seem to find the time to do. I waste so much of my PTO on doctor appointments and infusions that I feel like i never get to use my PTO just to have a day off for fun. I am now having a dental issue (unrealted to CIDP) but between dentists, doctors for my child and my on-going CIDP I just can’t find the time to talk to a therapist. I was hoping to deal on my own and find a way to relax and put things out of my mind. So far, not much luck. Maybe after the holidays I will put it on the top of my list. PTO days renew on Janaury 1 too. Thanks for the advice.
AnonymousNovember 14, 2011 at 1:49 pm
My grandma (not really related but that’s what I call her) talks with her therapist on the phone. She’s not able to make it to his office (she has fibromyalgia) & he has it set up that he talks to her daily while he drives to his office from home. It’s about a 10-15 minute drive so by the end of the week she’s had about an hour of therapy time.
I’m not saying you should talk to someone daily but you might be able to find someone who can talk to you while you are in your car driving to work or while on your lunch break.
I think it’s worth it to look into. Getting through the emotional & psychological issues of any chronic illness on your own can be pretty tough.
AnonymousNovember 15, 2011 at 10:57 am
I had a bad reaction to the flu shot like you did, but mild GBS. I am still treating 2 years later for what is essentially fibromyalgia. My immune system is low and I have active viruses that it is not suppressing correctly. This has been verified by an immunologist after going to multiple neuros and 2 rheumys who didn’t know what was wrong with me.
I had severe anxiety like you do about what was going to happen to me. I work full-time, am married and have 2 kids under 5. I took Xanax for over a year, one pill a day, which you can get from your family dr. I got mine from the first neuro actually. Klonopin is another anti-anxiety drug that my family doc prescribed for me, but I weaned myself off the Xanax and am not taking the Klonopin. You do have to be careful with Xanax because it can be addictive.
I also went to see a therapist who deals with chronic medical issues. It took me 3 tries. I saw 2 people before her that I did not click with. I saw my therapist for a year at lunchtime. I work in downtown Chicago and would walk to see her at lunchtime once a week. You can make time for this. It is very important that you do so.
It is ok to take an anti-anxiety drug or an anti-depressant to get you through a tough time and then you can go off them, slowly of course. I feel like I got to a good place after a year with my therapist and I don’t need to see her anymore, but I know she is there if I need her.
Your friends don’t want to hear about CIDP and neither does your husband. They don’t know how to help you and probably feel frustrated that they can’t. That is what the therapist is good for. And the therapist can give you support and advice. She gave me a lot of good advice about medical things too. Suggested a naturopath which was wonderful, etc. My son has medical issues and she recommended a doctor that connected me with another doctor. So they are useful in practical ways too.
I highly recommend that you take the time to try to talk to a therapist. It will help you so much and it will be life-changing. It is not a sign of weakness, it is actually a sign of strength when you recognize that you need some additional help. You need someone else to talk to besides your husband and your friends, someone that can understand.
AnonymousNovember 16, 2011 at 7:43 pm
The creepy crawlies at night; the burning; the worry that your CIDP will progress; the real concern about how to hold your life together with a disease like CIDP? You have lots of company.
Here are a few tricks I use to keep my feet on the ground and my mind from spinning out of control:
What’s the beauty of having kids when you have CIDP?
You have to get out of bed in the morning.
What is the best news about being “the” job – the one with the insurance – when you have CIDP?
You don’t have to make a choice; you have to go to work in the morning. (Choices are overrated, anyway!)
The even better news about CIDP?
Thank God for medical advances.
If you lived in a tent in Haiti, it would be raining and there would be no medicine for your pain; no hope for your CIDP and no soft place to bury your head at night for a good cry.
I have (extremely painful, progressive )CIDP and other debilitating neuro-muscular diseases that have quickly progressed. When I to into a doctor’s wait room (too many these days), I am always the worst one there – the kind where people nod, whisper and look at me with pity. I met many doctors who were overwhelmed by the complexities of my case or who lacked the knowledge, experience or understanding to unlock the medical mysteries of my disease process. Friends and neighbors shake their heads and tell me they don’t know how I do it. It would be easy to give up.
But guess what?
I get out of bed each and every morning. Why? Because I have a husband and 3 teenaged boys who need me. They are each 6′ and bigger but they still need their mom. What a gift – I am needed – cane, footbrace, wobbling and all. I can’t “do” much, but I can listen and I can surely love. I am blessed.
I go to work 5 days a week (when I can). Why?
Because I have the job. The process of getting there (and trying to stay there) is ugly but I don’t have to think about whether or not I want to go – it’s just how am I going to get there. When I finally do get to work I am relieved – I love my job; they need me and I find I have a lot to offer, despite my physical limitations. Working is a great distraction from my tormented body. I have taken sick days – too many – but I am still working, I still have my insurance…and… I am still having my weekly infusions.
The doctors? CIDP resources?
Keep looking until you find the right resources. Eventually you will find doctors who are up to the challenge of getting you better. Bring pictures of your kids with you – let them see what your priorities are. It took some time, but eventually i found kind, caring, compassionate and very capable medical professionals. Use this forum – read every entry. it’s a wealth of information and CIDP/GBS experience.
Wow – for me it’s daunting. But it’s also a gift – my priorities are crystal clear: my kids, my family, taking the time to look at the sky, stopping for a minute to celebrate that I am still …. alive. I intend to get every minute of living out of my life. CIDP just reminded me to do that.
Life is a gift = get tough, hang in there. And when the going gets really rough, tape a picture of your kids on the wall by your closet. You’ll have to get out of bed to see them. By then you’ll be able to open your closet door, get dressed for work and… live to see another day.
I have taped this quote to my desktop at work; it might help you, too: PERSERVERANCE GAINS YOU WHAT OTHERS MISS BY GIVING UP TOO SOON.
YOU CAN DO THIS!!
November 17, 2011 at 7:23 pm
well said Patty 🙂 what an uplifting post.
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