Me too!

November 27, 2011 at 12:42 am

I also fall asleep immediately, and can sleep for hours if undisturbed. Too much, I think.

Here’s an example. I slept really well on Thursday night. On Friday morning my daughter was picked up by a good friend and her girls. I immediately went back to bed thereafter, and was out like a light. I did not wake up until my daughter called at 3:00 PM to tell me they were on their way home.

I guess this is part of the CIDP…….maybe?

This sleeping pattern is fairly new, though. Prior to managing the pain I would sleep no more than an hour and a half at a time. Maybe I’m making up for the last two years.

Me too

October 31, 2010 at 9:04 pm

The week that I first started feeling the effect and before dianosis I also had a bad shortness of breath. Went to Pumotoligist and said had ashma. Went to Neurologist and said I had CIDP. Both said no relationship. Just to much related for me. Again just funny stuff we deal with.

Me, too!

October 22, 2010 at 1:31 pm

I, too, am a great “what-if” type person…and also am working on controlling it, so I know what you mean. Many of the classes I’ve been taking lately are trying to convince me of the importance of accepting the present, and to live fully in it. Not trying to affect those things that are out of my control, you know? Like you said, though…it’s hard to change a lifetime of conditioning, but I’m learning that it can be done…good luck!


Me too!

August 31, 2010 at 3:44 pm

Northernguitarguy – couldn’t agree with you more! What a lot of hooey and waste of money, time, and effort with the only result being criminals. Sigh :confused:

Me Too……..

July 7, 2010 at 3:02 am

I hear it all the time. If you were not in that wheel chair no one would know you had anything a wrong with you ! I like the one where everyone or most everyone mentions a job that I could do while in that chair. They don’t know I can’t set for more than 1 hour, thats on a good day, and then I have to go lay down on my side because setting up too long kills my back, and so I have to lay down on my side to get the pressure off my but and back so it will quite hurting. Oh yeah…well, your color looks so good and you look so strong and healthy.
All this kind of talk does for me is bring back memories of me visiting someone I have known has died and I go to the funeral home to pay my respects…when I am well enough to go.
I hear people filing by the casket say, “He, or she, looks so natural”. Or,
their color is so good”. Hears another one I hear all the time too, right along with the others I have mentioned. He, or she, says “They don’t look like they have ever been sick a day in their life”. Hears another I hear while visiting, He, or she, don’t look that old at all. LOL ๐Ÿ™‚
Folks,get used to it, because they will be saying all the above about you while you are laying in your casket deader than a door nail ! I hope to goodness I don’t look soooo natural when I am dead, and I hope I don’t look like I have never been sick a day in my life. I hope I don’t look natural, because that means I look pretty bad for the past 20 years now ! lol ๐Ÿ™‚
MallardDrake, I know you have heard all of the above in your line of business.

Me too

April 27, 2010 at 10:00 am

Lisa, I like you have similar issues. Fourteen months ago I started with severe pain in my groins. I spent several appointments with uroligist and several test with no idea what was wrong. as it spread I went twice to ER. After 11 doctors and a gauld bladder out, I finally decided on my own that it was nerves affected and went to a Neuroligist. He said I was fine and needed to go back to a uroligist. Thankfully I found a new neuroilgist and within days had a good dianosis and started treatment. I receive 40mg. IVIg every 28 days and my last visit was taken off all Advil and others similar medicine and put on Tramidal to protect my stomach. I keep pain from my diaphram down. I like you worry if I clump all pain as a side effect for CIDP. Each day brings new events. Hope this helps. Gene

Me too

March 19, 2010 at 2:38 pm

Add me to this list (5 yrs ago today was hospitalized for GBS and there for 12 weeks, 6 of them in ICU).

Like some of you, I need a trigger, but it’s fairly low and then the water works start.


Me, too

February 7, 2010 at 6:35 pm

I am also taking a break from this forum hoping that the argument settles down and that people return to treating each other with kindness. By the way, my toys include a stethoscope and a name tag followed by the letters “MD, PhD” for, as my mother says, I am a “doctor, doctor” with both a medical degree and a research degree in immunology making it (ironically to many, I guess) very reasonable for me to comment on both medicine and especially the field of immune diseases even though I am not a neurologist. I have kept these toys hidden on this forum because I am a sojourner on this journey and in fighting this illness and that is more important than degrees. At least I thought so. Lots of people know I am a physician because at the last symposium, my name tag identified me as such.

WithHope that we can work together to help one another.

Me, too.

December 15, 2009 at 11:26 am

As others have stated, I have a LOT of pain. But, I’ve determined that I have different types, from differing causes.

I relate to what Tim said about “Tooth-achy” pain…that’s what I’ve most often associated with this neuropathy that I’ve got going on. It’s horrible. Just a constant, nagging pain that is so intense it keeps me from being able to focus my thoughts when it’s at its worst. My wife knows when it’s REALLY bad, because I can’t stand for the TV to be on, or any distraction…I just lie in bed, awake, and focus on something else. I’ve actually incorporated several of the pain techniques we learned in birthing classes to dealing with my pain…focal points, breathing techniques, etc.

Then there is the pain from skeletal issues, like others have. Those, for me, are completely different…the stabbing, bone-on-bone types of pain.

Neurontin hasn’t done a thing for me; the only thing that works is opiates…either Lortab or Percocet. I guess I shouldn’t say that…Ibuprofen and Aspirin also seem to work at times, too. I’m convinced that simple Aspirin is still one of the wonder drugs out there that too many people forget about. Need to be careful with it, but it’s pretty potent for something so common and easily accessible.

I appreciate everyone’s input on this thread…helps me put things in perspective when trying to get further down the diagnosis path.


me too

December 8, 2009 at 11:31 pm


I too recently tested positive for sjogren’s… I don’t know what it all means. I also have necrotizing sarcoid granulomatosis, and decreased respiratory function due to scarring and nodules in my lungs.

These diseases all are rotten!

My only solutions: pray hard, live well, eat well, exercise moderately and then rest, smile and cry, and love!

I hope you get some answers and can move out of the mystery stage into the living with it all stage. That’s what I’m trying to do too!


Me Too

November 26, 2009 at 7:52 pm

I am thankful for
My loving wife without whom I would not be here today
God for healing and letting me stay on this good earth a while longer
Being able to walk again
Being able to go to the bathroom by myself
Being able to eat good food (especially on Thanksgiving ๐Ÿ˜‰ )
Being with my family & friends this Thanksgiving
All I have spiritually, physically, and materially

My Doctor gave me some good advice which I am sharing with you. When you are tempted to feel sorry for yourself remember when you were at your lowest. Like I say focus on what you HAVE not on what you don’t have.

I hope you all had a great Thanksgiving or in the case our friends outside the US a great day.


Me too???

March 31, 2009 at 8:56 pm

Since December the #’s are jumping big-time. Sigh.

me too.

December 16, 2008 at 6:12 pm

the more tired or taxed i am the more they shake. (GBS Two yrs out) mine are still numb as well.

Me too!

September 15, 2008 at 2:25 am

I have had alot of cortizone shots also. They seem to help alot! Too bad they can’t just give me aa full body shot! ๐Ÿ˜€ Then maybe I would feel better! LOL

Me too!

June 9, 2008 at 2:31 am

Boy, i wish i knew what to do about those darn jerk, twitches, and spasms! Started out only at night, but now it happens throughout the day,too. It is much worse at night, though.

The doc said the only thing i can take while pregnant is vicodin (prescribed for head, neck, and hip pain before pregnancy), so i take one before i go to bed, and that seems to help. I’m not sure if it just puts me into a deeper sleep, or if it really helps the “electricity” that shoots through my body in the night. Not too effective, but does take the edge off.

Me Too

June 21, 2007 at 9:58 pm

I have heard many people, mostly GBS’ers rather than CIDP’ers like me, but know that feeling. I was intrigued by Ladykits’s comment about the rib rotating. I have severe pin in my ribcage and it feels like I havea broken rib. It even hurts to breathe and talk. Is this the same thing? it goes away finally after an hour or so, until the next time. Some days its several times and then can go weeks with no problems.

I recently changed meds too. I have gone from 3600mg neurotin to 300 mg of Lyrica and 120mg of Cymbalta per day. My family dr added the lyrica but didn’t remove the neurotin. thankfully I had a neuro visit scheduled as she told me that neurotin and lyrica should NOT be combined as they are basicly same meds and work on chemicals in same manner so I was overdosing and not getting benefit. I have notcied a drastic change in how I feel but not sure yet if it is better or not.

My pain has changed in that I was numb on surface before and now my limbs go completely numb, like when the goto sleep and just start to wake up but not really get much better than the bee stings. Although my Flexeril has not changed (30mg/pd) my muscle spasms are less intense but I have that constant tight mucsle feeling. Sad when ya don’t know which is worse of two evils.

WEll, good luck and hope you can get relief.

PS. Ali, not been here in forever, email me and catch me up on how things are going.

me too

June 6, 2007 at 11:13 am

I had the same problem with ejaculation after I had GBS in 2004. In my case I think it was related to bladder problems as I also had problems pissing. It took me over a month to start pissing normally without help again. Soon after I also got the ability to ejaculate.

What caused the problem to last this long I think was the hospitals failure in giving me medications to prevent me from pissing uncontrollably. Someone misread the label I guess. Anyways its a problem which can lead to a lot of frustration. I remember my girlfriend at the time wasnt happy with my inability to ejaculate. Well….I’m better now and ejaculating like never before ๐Ÿ™‚ …I really hope you will get better too.

Me too

May 30, 2007 at 12:47 pm

Hi Gene,

How are you doing?

I love when the weather gets warmer but don’t like when it’s humid and sticky out side. Although I don’t complain because I don’t like when it’s cold! ha!ha!

Wearing a pair of good uv protecting sun glasses certainly helps with the sun glare. I never leave home with out them. I had Miller Fisher variant GBS so my eyes were effected a lot and still are today.

Bright lights still bother me a lot.

I tend to get skin rashes from time to time, they come on if I’m too hot, sometimes my allergies will bring them on or if I get stressed out it can happen. So I’m either taking a allergy pill along with my other medications.
I also use Vaseline Intensive care cream it’s called Advanced Healing also fragrance-free skin protection lotion. I know there is a calming cream it’s over the counter just don’t know the name of it. That can work too.

If the rashes get worse or just get annoying you may want to see a skin care specialist. Everyone is different.

Summer doesn’t have to be unbarable, just have to find ways to beat the heat and still have fun!!
Swimming is just one of them even if you can’t move around much it’s still nice to get into the water and cool off at the same time,LOL!
Take care! Stay cool! ๐Ÿ™‚

Me too

March 21, 2007 at 11:53 pm

I too had this problem and was waking about every two hours or so. When the weather got very cold this winter I threw an extra blanket on my bed one night and slept through til morning. My skin seemed to feel hot most of the time so I guess I didn’t realize I was getting chilled during the night and would wake up and then have to go. I feel so much more rested now without flip flopping all night long.


Me too

March 21, 2007 at 11:52 pm

I too had this problem and was waking about every two hours or so. When the weather got very cold this winter I threw an extra blanket on my bed one night and slept through til morning. My skin seemed to feel hot most of the time so I guess I didn’t realize I was getting chilled during the night and would wake up and then have to go. I feel so much more rested now without flip flopping all night long.


Me too!!!

March 2, 2007 at 8:05 am

This is from nothern Norway abt 69 degrees north. As a comparison, I can tell you that Anchorage AND Oslo both are at 60 degrees north.


Hubby took this last easter on a boat trip along the coast. Please observe the houses on the shore.

me too!

January 22, 2007 at 10:00 pm

i’m so sorry you’re feeling down in the dumps. i feel exactly the way you do. i slept most of this weekend away and i’m still tired. how can that be?? well, it sounds like we’re all in your shoes. the good thing is, we wear these shoes together and walk this path together. not alone. we all remember how “it used to be”, but now we all have no choice but to move on and live our lives the way it is now and keep the fight and determination within us, so we have the strength to keep going. you’re in my prayers as always.
with much love,

me too

October 29, 2006 at 4:58 pm

wow. i live in pennsylvania and my state is horrible with any kind of assistance. i’m now permanently disabled and on social security disability, so i don’t qualify for medicare, medicaide, foodstamps. etc. i do have a working spouse, so the state told me i had to go onto his insurance policy which is an extra $500.00 per month coming out of his pay, plus co pays and deductibles for specialist and medication.
although, i’m much better off than the elderly that have NO additional income and have to pay for EVERYTHING out of pocket.
i have an old habit that has helped me greatly. i have a huge jar that all spare change goes into every day; and when something major comes up, i cash in the coins and you wouldn’t believe the amount of money you can save just by throwing change unto a jar each day. we’re actually taking a two week vacation for the first time in a long time, thanks to the spare change in the jar.
i too had to hit the jar for co pays, deductibles, gas, etc. i know it sounds like a corny idea, but it works. i don’t know much about you to help you with financial aid programs. are you married, living alone, etc.? i know all of the agencies i called at the time. if you can tell me your status a bit, maybe i can help to steer you in the right direction to get you some financial help. i was a full charge bookkeeper and human resources manager before gbs took all that away from me. if you want to send me a private message i will do anything i can to get some assistance for you.
with much love and hugs,

Me Too!

July 17, 2006 at 11:48 pm

Hello everyone this is my return to the forms after a 3year absence.
I have had nothing but GI problems since onset of GBS in 1995. Some days cant go, other days going all day with diarehea. sp My return to this site is all about having ongoing symptoms and living in an area with no medical help with the GBS. So glad we have each other to get through this stuff.

me too

June 30, 2006 at 3:42 pm

I got this back from tn bart gordon

Thank you for contacting me regarding
Medicare reimbursement for intravenous
immune globulin (IVIG). Hearing from you
helps me better serve Middle Tennessee.

As you know, a number of members have
sent a letter to Health and Human Services
Secretary Mike Leavitt, urging him to
declare a public health emergency so patient
access to intravenous immune globulin (IVIG)
crisis can be resolved. As a member of the
House Energy and Commerce Committee, I am
following this issue closely.

Again, thank you for your input.
Please do not hesitate to contact me if I
can ever be of assistance to you or your

Stay in touch,
Member of Congress