I have had enough

I am not trained to give you any advice…..I have sat here in front of my computer for a while trying to think of something inspirational to type but….it all seems so trite….

So…lets talk about your pain and quality of life issues. Are you receiving any IVIG treatments for your CIDP? The timing of these treatments are different for each person, some have them every 2 weeks and some like me are on about a 6 week rotation. These treatments have always helped me to become more active and feel more of my old self.

Next, have you tried Nuerontin (never can remember how to spell that) for nerve pain? If not call you Dr ASAP. I am taking 3600 mg per day and it really does help me with the same type “nerve attacks” you describe. It takes several hours to build up in your system and may make you sleepy at first but it has worked wonders for me!

I am sure others will chime in and help as well but for what it is worth you will be in my prayers. Please drop back in and vent/let us know how you are doing

Stephen

Curiosity kills –

Please print your post and take it directly to your doctor. You may be having a reaction to your antidepressants, causing suicidal thoughts. Also, you say your memory is fading and you have new symptoms, it may not be GBS at all. Please see your doctor, if they give you no help, find a new one. Please think about how suicide would adversely effect your children for the rest of their lives. I had a friend whose father committed suicide, it is something you never get over. You think you have no use in life, that is not true. You are a father, and your children need you.

Curiosity,

I echo Stephens sentiments, everything I want to write seems trite. It sometimes just helps to get it out and know that some know what you are dealing with. My thoughts and prayers are with you.

Hi,

Curiosity has always been my foundation for knowledge, hasn’t killed me yet. First, don’t be so hard on yourself. Don’t you think you deserve a break for whatever period of time you need it? Who doesn’t want that in life? Especially when the weight of life gets heavier. Let’s take your depression. Some symptons that show up in people a lot, is being tired, sleep more, or a lot, and to me, that itself contributes to weakness. Ask any pro level athlete, or phycoligist in sports, and they will tell you, as a fact, that when the body goes, the mind goes quicker. Why they have to be in great shape, as in football, because when old 4th quarter comes along, their highly paid entertainment pawns, so to speak, mental mistakes come right up front and center in a hurry. They know the body, machine, is the culprit for mental toughness, or stamina.
The meds themselves can contribute to that also, as well as help the cause. Delicate balance, because each individual body has its’ own way of dealing with a foriegn invader, such as a pill. Why a lot of us go through, and come to understand, the trial and error process. I always say to myself, never go into first tries, expecting a result that may work. Might need some adjusting or tweeking for awhile before a result one way or another works for my body. Growing up in the 60’s, I have a pretty good idea of what throwing, or shoving, into my brain can handle, as far as meds:) are concerned, thinking my body can take anything(superman) and function will not be harmed, so to speak. Then I learned one does indeed, effect the other. Something about a ditch one night, but that’s another story.
From my experiance, my biggest problem trying to get to sleep, and if awoken during a night or day, is trying to shut my mind down. My body keeps screeming at me “hurry up will ya, I need the rest”. Symptons there could very well include such things as, mental stamina loss, concentration, trying to put scattered thoughts into some kind of order, reasoning, short term memory loss, mental slippage. Anything sound familiar?
By identfying sourses like that ie. shaking hands as an example, all of a sudden, “YOU”, aren’t so much at fault for all that, are you? The machines a bit broke still, and still under repair, meds are tried to help get the body and mind back on the same page, and so on.
Phisically, for me, weight in my enemy. Why I ask friends for only half a glass of something when they offer. Get a full glass, and the whole room now knows I can’t function, ie. pick it up. Just keep on adjusting, tweeking life really, and working with what my body will allow me to do at the moment. I absolutly stun people all the time. They think I’m trying to insult their intelligence or something, when I tell them, or they spot something out of the “aledged” norm, that I am an incomplete quad. Couldn’t be! Your walking around just like me! Ain’t so!. If they only knew. I will not try to explain myself. If people have a want to know, then I’ll tell them the truth. Often, just having to laugh it off by saying “I just make it look easy, that’s all”. Yuk, yuk, yuk.
You said, you ‘could care less about anyone’. Bingo! That’s exactly what you should think. Survival has to be, I repete, has to be, a selfish endevor. Doesn’t mean I have to like that feeling, because I’m a very unselfish person, but it’s a nesseity. First things first. Time will get the rest of you taken care of. Sorry. You’ll just have to wait. I’m still a bit busy here. You have that right, and choice. You also have the right and choice to make your support system understand that. If you don’t know your disease that well, people that haven’t experianced sure will “never” truly know. That’s a given. Not your fault. I’m right behind you at 7 years out. Still improving, but because I live it, I’m the last to see it. Big things do indeed come in small packages. I just learned to quit looking for the big package, expecting something big in it.
Others can speak, as they have so far, about pain. Huge issue there that contributes to everything everyday, including adding to what I stated above, but much more to the mind then the body. When I had pain long ago, boy did I get an education. Kind of thought all those years racing motorcycles taught me all I needed to know. Agin, boy, was I missled.
Like I said, weight is my enemy, both phisically but more mentally
Keep posting, and get to know us more, as well as knowing you too.

I am sorry for your emotional pain! It’s something that comes with chronic illness. It would be so hard on your family/friends and GBS family should you choose to leave us. We would understand but your family/friends would always carry a guilt wondering where they had failed you. And because you love them as you do, I know that you wouldn’t want for them to spend the rest of their lives like that . . .

Please see your physician as perhaps this antidepressant isn’t the right one for you. Neurontin made enought difference in my pain that I no longer was sleep deprived. That in and of itself can make anyone “crazy”. Alls you want is some relief. And all of us understand that! Please don’t give up. Ask all the questions you want to, try any or all of the things suggested to you and keep on keepin’ on. We really do care that you are hurting in so many ways. hugs, hugs, hugs 🙂

Hi CK. I have read your story over and over since yesterday, trying to think of just what I wanted to say. I guess I’ll start with what you said about having a gun in your mouth many nights and trying to convince yourself to Just do it. That is exactly what my father did 20 years ago sept.3, exactly 1 week after my 30th birthday. To this day, there is still grief, anger and sadness. Your wife is with you because she wants to be and it sounds to me like she’s a wonderful woman. Believe when I say most people DO marry “for better or worse, in sickness or in health”. My husband would rather have me with disabilities than not at all. I have battled depression for many years and have found antidepressants can work very well for a long time and then you have to switch because they stop working. Also, I think it was already mentioned, Not every drug works for every person. Have you noticed any improvement with your antidepressants? 2 months should give you a pretty good idea if they are the right ones. With your meds, I also take Klonipin and it is prescribed by my psychiatrist. It really helps with the anxiety and sleep. You might see if yours will prescribe it instead of your neuro. Also Darvocet is an old pain medication that some people have been on for years. I’m not sure why your neuro is so tentative about giving it to you. I personally like the idea of you getting another neuro. Your present one, well let’s just say he leaves more than a little to be desired. Please continue to stay in touch with us . We care and want to help. Vicki

C.K.,

Thank you for coming to this forum instead of hurting yourself. You have found a family who truly does understand your problems and will be a great source of information and support.

I know what you mean about knowing of the GBSFI for a long time, but not joining here. I have always thought that I could do anything myself without help, but finally decided to give this a try. I’m so glad I did, and I think you will be too.

I echo what others here have said about your anti-depressants. It often takes trying several, before you find one that works with your own body chemistry. It usually take at about 30 days before you can tell if a new one is working. It’s worth changing to another, if one kind doesn’t work for you. When you find one that works, you will feel lots better.

Most of the anti-depressants that are prescribed for GBS/CIPD also have a secondary use as pain relievers. The chemistry of this is not known, but like many things in medicine, they work, even though we don’t know why.

Others here recommend Neurotin and it works wonderfully for them. There are several similar drugs that can be substituted if this one isn’t right for you.

Klonopin is terrific for help with sleeping, but too much can give you a sleep “hangover” – foggy feeling and hard to wake up. I take 1/4 tablet and it’s enough to make me sleep soundly without feeling bad in the morning.

Another great sleep aid is Ambien. It works great and leaves you with absolutly NO sleep hangover.

I have residual pain from GBS and occasionally take Dilaudid 2mg. It cuts the pain when I have a really bad day. This one isn’t for continuous use.

Fatigue is another common residual. I have recently started taking Provigil. This is helping to give me more energy and stamina.

I”m sure you’ll get lots of advice here about other things that help with the pain. You really don’t have to suffer – there is help.

You need to find a new neurologist. Gene, who is one of our members here, has been compiling a list of neuros in various areas who are good for GBS/CIPD. He may be able to give you a name for someone in your area.

Your children and your wife need you. Please don’t give up.

Best wishes and prayers for your recovery.

CK when was the last time you a nerve conducting test to see if you are getting worse? Some people have GBS but later realized it is CIDP (Chronic version of GBS) when after a period of time they get worse and the nerve test shows the same. If that is the case then it’s time to get IVIG to stop the progression of the disease. I was on Neurontin but it made me very tired. Now I am on Lyrica and I find it helps my anxiety.

Sue

Tom….also try and look at this from another angle. Some foods can make you hybernate or give you a tired feeling. We get energy from food….you might want to take a look at your menu. Even just a variety of different foods will gave you a different perspective on life with your family and watching their experiences of suggesting a meal that is of their choice could be something everyone can join in as a family. I am sure your wife would appreciate suggestions and the kids not only will start to think just about what they would enjoy but how others will enjoy it too. Read books to each other or play games as a family. Have a family night. Have a date night for just you and your wife. Come out with a new attitude and help them understand how you are feeling and listen to them and how they are feeling. I bet they are missing the little things you used to do. Those little things that were a BIG part of who you were. You still have a sense of humor and still can have fun…..maybe not party all night but for a family picnic or a sing along or having you there while they watch a scarey movie! List the good things about your family and make that list your priority for things to address each and every day or once a week or each month. Make sure you have private time with each and everyone of your children. Don’t remove yourself, but do the opposite, put yourself in the center of your family as the Nucleus. Don’t over do it and let them know when you need a rest. Make sure you take time out to do what you like to do. You might want to look for a new hobby that you and one of your children can share together. Think positive and fight this illness…..smile and they will smile back…laugh and they will laugh with you. I don’t think that GBS/CIDP has taken that all away from you? You are needed…..you just don’t realize how much. Don’t be selfish, our job is to educate the ones around us how we feel and ask how they feel?

Also I am not sure if you have had any blood tests that monitor your hormone levels but hormones can play tricks on your mind and body and energy levels also. Just a thought that maybe all this is not all from the GBS/CIDP.

Remember YOU are Worth it!

Hi CK,
I’m not sure how I want to put this, I’ll give it my best shot. First of all, your children and wife need you so you just have to forget about giving up. Second of all, if I can come through this and still be positive I know you can. I will tell you a little about myself, I am HIV+ and came down with GBS 10 yrs ago from a side affect of my HIV meds. I was paralyzed from the neck down, had a trache and feeding tube installed. It took a year of my life in ICU and a rehab facility before I was sent home in a wheelchair. I’ve gone thru every mood you can possibly think of and thru it all I kept thinking this can’t be it for me. Six months after I got home I found out I was pregnant, my husband and I were shocked to say the least. Doctors did not want me to have the baby, but we figured if it was meant to it would be. Long story short, I have had 2 children since my GBS and neither of them were infected with the HIV virus. They are now 8 and 6 and very healthy! I chalk this up to positive thinking and following Dr’s orders and no bad habits. Me on the other hand I have gained weight, I walk on numb feet and legs and I have Carpel Tunnel in both wrists. I take 12 prescriptions a day, one of which is percocet for the pain, I get up every day (even when I don’t feel like it) and get my girls off to school. I can not work but I keep myself busy and I do not dwell on my health condition. So keep your chin up ( even when you don’t feel like it) and don’t let this thing beat you. I know it is hard and this GBS monster is as ugly as it gets, you have to keep fighting it. Have any ?’s for me feel free to contact me by e-mail. I hope my story has inspired you, even if it’s just a little. Take Care.

CK… Where are you? I’m a bit slow (in so many ways), but this thread caught my eye and I thought I would bring it back up to the top of the list so when you check in you will see we are still here with you.

I am almost 10 years post GBS and can relate to a whole lot of where you are coming from. This illness/residuals is very isolating and frustrating. This forum has filled a void in my life. I suggest you hang tight with us. We all keep trying new and different meds, so do lots of reading here.

Waiting to hear from you 🙂

bumpety bump……….

😀

Curiosity we are looking for u??!