New on the block

Patricia,

Many people have CIDP in a manageable form. I am happy for you. Those returning relapses can be more difficult each time, or you may manage them easily. CIDP is so different for us all.

One thing that is true however, is that fatigue and stress can aggravate your symptoms. The more nerves that demyelinate is a particular muscle group, the more susceptible you are to fatigue. If you over-do it, recovery will be slower. I try to learn the signs of fatigue in me, and then don’t cross the line. If I over do it, I suffer quite a bit, so I avoid it at all costs. Just pay attention to your energy levels.

As far as what others think, don’t try to do more just because others think you can handle it. They don’t have to suffer when your symptoms return. Do what you can and then stop, apologize if necessary and go on. Your health is so much more important to you.

I hope things go well for you. Welcome to the forum.

Dick S

Patricia, 9Jun2006
Welcome to this group. You will find many than can answer question from personal experience. I have found that to be very helpful. Enjoy your voyage on the gbsfi forums.

Were you diagnosed for GBS or CIDP?

Many people see those who have “invisible” afflictions as being normal. “They should be able to do the same things I do.” What is even worse in many cases is the person can not understand why they get tired so easy. A solution is to work harder to get back in shape. You may have heard the concept “No pain no gain.” This process can increase residual symptoms or even worse bring on a relapse. Recovery from this type of “get back in shape program” will take time. Many including myself have learned to listen to body signals and do things within those limits.

Take care and be well.

I am glad you got treatment. I hope you stat to improve with time and patience. Keep us up to date.

Not knowing where are limbs are is not uncommon. If I don’t look down when I walk, I will definetly fall.
And as far as looking okay…I hear that a lot. When I couldn’t walk after the CIDP set in after the birth of my youngest daughter, all I heard from people was how great I looked following a pregnancy. Never mind that I couldn’t walk, hold my daughter, etc. It was all in appearance with people. I wanted to scream, “Do you want to see my nerves as proof???!!!???”.
I also noticed when I wear my AFOs, people are much more considerate in not running me over in the parking lot, opening doors, etc. However, if I am out without them, I have been almost run over twice at Sam’s Club for not crossing the lot fast enough and have had countless doors slammed in my face.

It has all taught me to be patient with all of humanity. Just because we don’t wear a sign around our necks stating our disabilty does not mean that we don’t have one. I get the ‘look’ if I park in a handy spot at Sam’s but being closer to the cart returns, I park there now anyway for safety sakes.

I hope your relapes are few and far between and that your burden lessens. caring for a loved one on top of CIDP must be hard. Take care and keep your chin up!
Peace,
Mary

I am brand new to this too and need help in getting started. My husband got 2 Lyme vaccine shots in 1999 and was diganosed with Lyme disease but I think that he might have CIDP.

I read something once that brought tears to my eyes and helped me…
keep your chin up – it’s easier to see heaven that way:)

I know after being diagnosed, I made a list about 6 months into treatment listing all the postive aspects of CIDP

Besides learning patience (something I always had struggled with), I learned not to judge by outward appearance (see above post!) and that perhaps some things really do happen for a reason.
Had I not gotten CIDP, I may have finished up my teaching degree and began at a school. Or continued in engineering and worked endless hours being too exhausted at night to be with my family.
Now because of my condition, I don’t drive much so I am truly a stay at home mom. I also homeschool which has given me an oppurtunity to be with my children that I don’t know if I would have persued prior to CIDP.

See if you can take on the Pollyanna attitude and make a list of things to be glad about. It may seem short at first but I’m willing to bet you can add as you go!
Peace,
Mary

[QUOTE=badmommy]See if you can take on the Pollyanna attitude and make a list of things to be glad about. [/QUOTE]
I like your attitude looking at all the positive aspects of your CIDP. Mine started late in life only after I retired at age 67. I am thankful for this reading the many posts from people much, much younger. My wife and I joined the Peace Corps in Thailand in 2001. We received a whole lot of vaccinations and shortly after that my first symptoms started. We had to quit Peace Corps only after a few months because my wife had an accident, but a year later we returned for two years to teach Burmese refugees.

My variant of CIDP has been progressing since then and is getting worse every year without any effective treatment so far. IVIG isn’t doing much and Prednisone was a disaster.

This isn’t Pollyanna but just a plain and simple positive attitude: If I had a choice, I still wouldn’t trade the greatest adventure of my life, the experience in Southeast Asia for being free of this strange disease.

I understand about the people who think you look fine, I can’t drive anymore either so my poor mom gets most of the abuse when we park in handicap parking, bless her heart. I’m 43 and she’s in her late 60s, they always look to her first because of her age. To keep some of my independance I take a cab early in the mornings when the store first opens so I don’t have to deal with pushing a cart in a crowded store. I plan any family gatherings by napping first and making use of any bedroom at the gathering when I’m tired out. Most of my time is now spent with people who love me and who try to understand my limitation. It can be a rough road but as my mom says God never gives us more than we can handle.

Patricia,

I hope you are doing ok. I think when it comes to something like the symptoms your having and your history it is best to go and get it checked out right away at the ER. Better to be safe when it comes to that stuff. My thoughts and prayers are with you.

Jerimy

About the Lime disease. I know a lady with M S who has been told that it may be Lime disease. Your husband needs a good neurologist and some testing and M R I. If you don’t already have a Neuro. start with a teaching hospital. They see these strange diseases more often than local neuros do. You would have a better chance of an accurate diagnosis.
God bless both of you. Mary Ann

Patricia,

It is easy to vent your frustrations here. I can’t get past a problem I am having until I release it. Releasing it for me means talking it out, sometimes listening to extra loud music will pound away those frustratons. Whatever it is, the worst thing for me is to hold on to it and let it eat at me.

Some people deal with adversity differently. My wife holds it in and then explodes from time to time. But her Daddy did it that way as well. My youngest son wears everything on his shirtsleeve, my oldest son holds it in some. My daughter tells us to leave her alone. (We still try real hard to stay involved.)

So if you need to get it out, get it out here. Sometimes we might even be able to help.

Take care cyber friend

Dick S

Dear Patricia ANN!

There’s been a lot of posts on your thread, so I may be saying something that’s been said or asked before.

First of all, so sorry to hear about your condition. I really understand your situation, even if I can’t remember having had such a hard time as you obviously have had from time to time.

Do I remember correctly that you said you never had any treatment? Do you see a neurologist at all? Do you have much pain, or are the motoric difficulties the worst? There might be medication that will help, you know

You mention vaccine as a possible trigger of your CIDP, but in many, many cases, stress, especially if it’s over a longer period of time (in your case 10 years!?), plays a major part in triggering CIDP – or in my case re-diagnosed PDN. For me, knowing as much as possible about why and how my illnees affects me, has been a great help in handling my fate.

Hope you are as well as possible at the moment!:)

If you feel like asking me anything – please do!

I remember getting the “disabled placard” for my car. The gal behind the desk said ~ “Remember this, others will look at you and perhaps be rude, but, you know why you have this. Your doctor wouldn’t have given it to you if you didn’t need it. Be strong!”. How many times I have used that reminder in my head!! Welcome to our caring “family”.