pain pain pain

[B]Feets are swollen
Mouths got the thrush again
Back aches
Cats are stomping around
Up all night, sleeping all day
It’s cold and I’m weepy and i want my Mama but she’s been gone for 28 years.
We need Spring to hurry on up and get here for a big dose of warm sunshine and pretty flowers.
Chin up kiddo, hope you feel better soon.[/B]

Oh Sherry,
All I can say is YES, I am there so many times it is almost weird now when I’m not. I just keep thinking, thank God I am not working so I can just do what my body wants to do. Sleep, not sleep, eat, not eat, move, not move. I just wonder if this is how it will always be. If so I just want to know. Sorry, didn’t mean to railroad your post. Just know you’re not alone and when you feel like this just let yourself be. Do what you need to do. Enjoy whatever it is.
Linda

Sherry, I am so sorry ~ here’s a hug 🙂 And check out “the Tavern” for a surprise!

Big Hugs to You Sherry. Hope You get some relief soon.

(((((((((((((((((((()))))))))))))))))))))) from Iceland, I understand you so well, I could do this same, 24/7 we hardly see sun at this time so why bother go up.
xoxoxooxoxoxo

[FONT=”Comic Sans MS”][SIZE=”2″]Hey Helga.
Come on over to the Tavern, I’ll buy you a nice hot drink.
We’re doing Tahiti this week, swim up to the bar in nice warm water, the sun is shining, what could be better?
My toes feel better just thinking about that warm sand under foot.
Yum
Veronica[/SIZE][/FONT]

Sherry,

I went through a period where I was very tired. Then one of my doctors told me that I might be sleeping too much. Early on, when I returned from the hospital, I slept anywhere from 9-11 hours a night. At that time, the sleep was good for me. But as I started to heal, I don’t think my body needed as much sleep; however, I kept the same sleep patterns. After my doctor suggested 7-8 hours a night, I tried it for a few days, and I truly felt better. He also told me not to go to sleep after 11pm, and to try to go to sleep and wake up at the same time each day. I took his advice, and when I stick to it, I feel great.

I’m sorry to hear about your pain, and hope you can pull past it soon…

[FONT=”Comic Sans MS”][SIZE=”2″]PKS
Sleeping ‘too much’ can also be sign of depression. Been there, done that!
Big distinction though, if the sleep is restful then it’s okay no matter what time of day or night you get it, take it from a life long night owl. Fortunately my job lets me work all night and sleep all day.
On the other hand if the sleep is not restful and leaves you feeling even worse, then there’s a problem.
So that’s ‘Dr. Veronica’s’ diagnosis.
Now, it’s about this swelling around my ankles and feet.
V[/SIZE][/FONT]

Yes, I agree – sleeping too much can definitely be related to depression. In my case, I was sleeping because I thought I would heal quicker. (You know, the concept that you heal when you sleep.) And you’re right, everyone is on a different sleep cycle.

I was just sharing what worked for me. In my case, going back to a normal (what was normal for me) sleep pattern, 7-8 hours/night, really helped.

Anyway, wishing you health, and relief from your pain…

just to show how different we all can be – at the beginning i slept 20 hours per day. it wasn’t due to depression & it didn’t depress me. my body was exhausted. the more i rested/slept the faster my recovery. take care. be well.

gene gbs 8-99
in numbers there is strength

[FONT=”Comic Sans MS”][SIZE=”2″][B]PKS,
Do you dream? I’ve noticed that I haven’t been dreaming, or having nightmares, for that matter, in a long while.
Just curious.[/B][/SIZE][/FONT]

[FONT=”Comic Sans MS”][SIZE=”2″]Hi Gene,
I haven’t been sleeping so well lately, think it’s a combination of the Pred and anxiety over all the things that need to get done like [I]yesterday![/I]
How do you cope?
V[/SIZE][/FONT]

hi veronica,

amitriptiline to help you sleep. it also is a gbs pain killer. buspar for anxiety. sorry i can’t remember if you are gbs or cidp. if gbs, you should up your neurontin. 5600 mg/day is max. taper off the pred. it is no good for you & no good for gbs. if cidp, it is better for you to have 1st tried to see if ivig or pp works for you. pred should only be tried after ivig & pp fail. if on pred you must take 1800 mg/day of calciuim. tums will work just fine. you are not the person you used to be & must come to terms w it so your anxiety level goes down. your recovery will contine to be slo, if at all, unless you do less & rest much more lying down. others will have to pick up what you no longer can do or the heck w it. it won’t get done & that is just fine. took me 26 months to figure that out & then my recovery got on the fast track. today i do 60% of what i could do pre gbs, but it is soo much better than lying in bed only able to make a potty call when i 1st came home from the hosp. the take care. be well.

gene gbs 8-99
in numbers there is strength

Veronica ~ for years I did not dream (that I was aware of). When they first came back it was only [I]horrible[/I] nitemares. Now, I am mostly back to the usual mix.

Steroids can really mess you up!! Yes, initially they can be a life saver but . . . The best book I have found is: Coping with Prednisone by Eugenia Zukerman and Julie R. Ingelfinger, M.D. You will quickly learn of all the side effects 😮

Listen to Gene. He knows!!

Good thread with lots of good advice! I am going to a compression center for the swelling or lymphodema in my ankles and that is really helping me! I have a machine here that does a massage to push the water out of my lower leg and then compression wraps to keep it from swelling. They were a pain in the butt but it is really helping. I have done that since the first week of December working on one leg and then the other. I now get my second garment for my right leg and then I will gain alot of freedom. During the Winter has been a good time to do this it has kept my feet warmer.

Most of my rooms have very very bright floresent lights to help with the Winter funk. I use them for working on the computer, reading and watching TV and cooking. Here we have 72 per cent of our days are over cast and the Sun is rare. With the days also being short of sunlight I have learned that using the lights really helps.

I hope that everyones pain lessens in the coming year. I am not on my meds for the discomfort that I have. The burning and itching, feeling cold or hot consistantly is changing. Some days it is only in the tips of the fingers and toes and somedays it seems to be above the wrists and ankles. That change just gives me enough to get by. I know that many of you can understand the pain that each other are suffering with.

It took me a few months to start dreaming and then it was dreams that I did not have GBS. Then that started and the nightmares started. Now it is starting to go back to normal dreams and in them I have GBS but it is not a big part of the dreams. It only comes up once in a while.

I agree that sleep and REST is what is needed. People might not understand what fatigue is. My Mom says I sleep too much. I try and get 10-12 hours of sleep a day so that I don’t feel like I need to go to bed after each little chore I do. I don’t take as many naps during the day and can actually watch a movie all the way thru now! You learn to do what you have to do for your body’s needs. We are all so different but so similar in our experiences.

Hang in there everyone! 🙂

[FONT=”Comic Sans MS”][SIZE=”2″]copied from another thread from:[/SIZE][/FONT]

Dave
Junior Member

Join Date: Oct 2006
Location: Des Moines, Ia
Posts: 12

[FONT=”Comic Sans MS”][SIZE=”2″]Thought it might get more response here[/SIZE][/FONT]

regarding pain post gbs
Hi everyone,
I had gbs in Sep of 2006. I was pretty active prior to and try to continue exercising. I find I have pain often in my back and neck and this upper abdominal pain as well (it feels like pressure with some nausea) I was wondering if anyone else is or has experienced anything similar? I have had gi tests with nothing notable found. Please let me know and thanks.

Dave Tornabane

[FONT=”Comic Sans MS”][SIZE=”2″]Copied from another thread;
[FONT=”Arial”][SIZE=”1″]Dave[/SIZE][/FONT][/SIZE][/FONT]
Junior Member

Join Date: Oct 2006
Location: Des Moines, Ia
Posts: 12

Default Questions regarding pain post gbs
Hi everyone,
I had gbs in Sep of 2006. I was pretty active prior to and try to continue exercising. I find I have pain often in my back and neck and this upper abdominal pain as well (it feels like pressure with some nausea) I was wondering if anyone else is or has experienced anything similar? I have had gi tests with nothing notable found. Please let me know and thanks.

Dave Tornabane