IVIG and maintenance of CIDP

Chirpybird,

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,

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.

Cheers

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.”

I have to agree about wanting to get a treatment.

There are some days when Emily actually looks forward to it. She says it just makes her feel better.

She asked me tonight if she was getting a treatment this week or next.

Kelly

[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!

Tina

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.

Kelly

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.

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.

Kelly

Chirpy Birdy,

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.

Good luck!

Jessica

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.

The future?
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!!

Patty I think you have just become my new hero! Such wise words and such pluck and just good old fashioned courage. Kudos to you.
Laurel

Patty, you’ve just reminded me why I am here.:D

[QUOTE=PattyO]
PERSERVERANCE GAINS YOU WHAT OTHERS MISS BY GIVING UP TOO SOON.

YOU CAN DO THIS!![/QUOTE]

I definitely needed to read this today. Thank you so much for your entire post, but mostly the part in quotes.

well said Patty 🙂 what an uplifting post.