AnonymousJune 29, 2007 at 8:17 pm
Is it just me but do any of get nervous when get some of the sympoms you had in the early on set and you think to yourself is this just fatigue or a relapse. Or some extreme fatigue or tingling or pain you think to yourself oh, no, not again. Is it normal to have these thoughts? Fears? Anxieties. Yes I am on anti-depressants and they are working wonders with my nerves. I just talk a out thinking about thoughts about getting it again or a relaps. I do have good days. I try to think and stay positive as I can. The bad days when I hav e them are bad. I also wanding if any of you have worse days during times of bad weather or fronts, or can you tell a cycle of when you are going to have bad days. I still trying to figure all that out if I can. It still doesn’t make sense to me. As I am typing my left side feels very weak always did during the on set and IVIG and am tingling from my toes to my finger tips. I am going to call it a night. Just wondering if any of you get nervous as I do. Thanks.
AnonymousJune 29, 2007 at 10:39 pm
Kinney, It’s been over 20 years for me and I still get nervous. But I guess I’m used to it too, if that makes any sense at all…:o I think that after all we’ve been through that it’s only natural we would have these fears.
And yes, I definitely notice increased symptoms when the weather starts changing. Fog or the rare rain we get here just kicks my butt. Cold grocery stores are absolutely awful and will make my fingers almost useless for a while. But stress -emotional or physical- can also get me going. You just need to pace yourself, understand that these feelings and fears are perfectly natural, and ride them out. But also start practicing different dialogues in your head; like how far you’ve come, how natural these feelings are, and how you might like to spend your brain power thinking about better things. It takes lots of practice but it really does help. 🙂
AnonymousJune 29, 2007 at 11:33 pm
I think we all get a little nervous. I know I do. But I try not to worry about it and try to remember it could be something else not just GBS. I have to take medicine for anxiety at times because I can get so anxious. Just remeber we all make it thru.
June 29, 2007 at 11:46 pm
it sets up panic attacks with me…which makes residuals worse. So it is a vicious circle unfortunately. I am getting better about it I think, but it would be nice to put it completely behind me. Like tonight, I am exhuasted from the long days and stress of moving and settling in. My legs are a bit weak and it made me have one hell of a panic attack. I have been fine, no problems no indication of a relapse, yet this has me scared so badly. I pray it is just residuals, I pray hard about it!! I hope there will be a day that I dont feel this fear anymore.
AnonymousJune 30, 2007 at 8:32 am
I am recovering from a mild case of GBS.I went through panic and stress and scared it would come back. my 3rd night in the hospital I turned to God and told him my feelings and in about 10 mins calminess came over me. I still have this calminess.My DR put me on stress meds but they made me feel worse. I stopped them and do what I am suppose to. I look for a change every morning , Every day I give myself to God and say do and use me as you wish. Worry will make our selves feel worse think postive look at others alot worse than you are and be thankful. Stop punishing yourself and be thankful you are getting better. Think of others and help them. think postive you will be ok Spirtual love (Steve)
AnonymousJune 30, 2007 at 10:40 am
Hello, I got GBS in August 2006. Yes, I do get a little nervous when I feel some of the early symptoms but I usually push the thoughts back into my mind and concentrate on what I’m doing. I look forward to the day when all these feelings will disappear…I count my lucky stars that I can walk and lead an almost independent life. Sometimes even a slight sore throat might make me worried. I get pins and needles after swimming, tremors if I’m nervous or upset and I find it difficult to climb stairs if I’m tired. Hot weather makes me very tired and if it’s cold and humid, I find that I move less freely. Take care and relax.
AnonymousJune 30, 2007 at 12:51 pm
My brother had GBS earlier this year and I can tell he can get nervous about a reoccurrence. He was prescribed an antibiotic for a lung infection last month but he just couldn’t take it because it was the medicine he was on when the GBS presented itself. It’s not unusual for traumatic experiences to alter our future behaviors / decisions.
What I’ve told him is to concentrate on things that hes DOES have control over. i.e. diet/ nutrition ~ attitude ~ etc. I’ve told to concentrate on doing these things on a daily basis and then leave the rest to God.
As far as nutrition goes there are supplements that can promote calmness — and sometimes it’s because we are deficient in some of these that we can get more anxious. So consider taking a look at your nutrition and see if there are some things that you can improve on.
I’ve had anxiety issues over the years and when I approach my days like this…well it gives me a sense that I DO have some control.
ANYWAY — just a suggestion. I hope you can figure something out and can feel better about things.
July 2, 2007 at 12:15 am
I pray a lot and am a quite positive person. Which is why the anxiety and fear bother me so much. My insurance is up nad I dont know who to tourn to once my meds run out…which is soon. I need more rest, more peace, and I want ot stop being afraid all the time. Right now my fear is intensified because of having surgery a couple of weeks ago. The stress of setting up the new house, not enough rest, etc has my residuals acting up as I said…its a vicious circle. What I need to do is meditate on it while praying and ask and beg for peace and overall calm and well being. I dont ask for much for myself but this I need desperately. HE helped me thru in the first place, along with my willpower and positive thinking.
May God lay his hands on us now and take away our fear and anxiety. May he fill our hearts and minds with peace, calm, and take away our fears and our pain. Please touch each of us, Dear Lord, lay your hands on us now in our time of need. Amen.
July 2, 2007 at 7:51 am
I have feelt this like others, thinking now Im relapsing or can it be hiting my again. I was on some new med to stop smoking and I after few days I felt my feet numbing up and I could harly walk, I realy panic then and thank god I was still at the rehab when this happen, they took my off the meds and bingo I feelt day after little less numb in my feet.. the numbness was up to my hips, but after 3 days I was just normal, like Im used to be these days, numb up to my knees. It have been like that last couple of months. One question how long was it until you got ca. normal feeling in your leggs after you start walking again, or dont this normal feeling never come again ?
AnonymousJuly 3, 2007 at 6:51 pm
After leaving hospital time went by and I got the pins and needles again and was terrified that it was coming back. It wasn’t until I found the Boards that I discovered that it was fairly normal and was probably actually my nerves mending! Time went by and I got the ache in my thighs when I sat down, which was one of the first things that happened before I was diagnosed. Now that did make me nervous.
A good bit of time went by and the aching thighs happened again – and I did wonder if it was coming back.
Now, I occasionally get pins and needles (that still makes me a tiny bit nervous) but the numb hands, the duff arm, the pudding fingers, the sudden fatigue – no, they no longer make me think it is returning. I see them as minor residuals, a memory. A few years ago, I got tired of being scared and decided to consider what I would do if it returned. First thing – I panicked. Then I realised that if it returned, much as I would not want it, the first thing would be to get straight to the hospital and tell them I wanted plasma pheresis, now – because that is what worked for me. I would also know to ensure that I got physiotherapy sooner rather than later. I would, hopefully, have the sense to rest (having learnt the consequences of not doing so). In other words, I would be more in charge of things, not scared of the unknown.
Spending your life fearing a return of GBS is such a waste. Chances are that it won’t come back and you will have wasted time on worrying. If it does come back, you have wasted time on worrying – because the worrying will have changed nothing other than your enjoyment of life. It will not change the outcome one iota other than to your detriment.
I was going to say that weird things happen after GBS, but actually they are not weird following GBS, it’s just that we didn’t know they would happen so they seem weird.
Anne mentioned that she has trouble climbing stairs when tired and she is less than a year since getting GBS. I’m 14 years on and when I’m tired, I walk upstairs rather like a duck – not very often now but on occasion it still occurs. That’s okay – because I know it and am used to it.
I personally think that getting the strange sensations after GBS, that you had when being hit by it, is your body in reverse mode – the nerves tingled as they were damaged and tingle as they mend.
Fairly odd Mother – that’s a lovely prayer. You mentioned being in a vicious circle. you’ve had surgery, set up a new house and are not resting enough. I don’t persnally see the circle in that. I read your body being pushed and being asked to cope with one thing after another. You ask the Lord for peace and calm. You can help by putting yourself in a place where it would be easier to receive it – your residuals, unsurprisingly, are acting up and my guess is that your body wants you to rest and also to recuperate after the surgery. If you put half the effort of setting up your new house into resting, you may well find peace and calm descends.
You may meditate, pray, ask and beg. Does not the residuals acting up give you the answer you seek? Rest, recuperate and give your body a place and time to heal. I urge you to listen and respond to what your body is telling you, give it a chance and the opportunity.
I apologise if the above sounds like ‘I know it all’ – it’s just that in your post I read what I’ve being doing, to a lesser extent, lately. And what I have written is addressed to you and to myself. We are our own harshest critics at times and the last person we look after is often ourselves. Your post now has me thinking about just what the heck I think I am doing to myself this last week.
AnonymousJuly 3, 2007 at 10:00 pm
Teresa Anne, you are one wise woman.
Sometimes when I find myself in a tizzy of worry I just think about how lucky I am to even have the reminders of how it could be worse. So many of the people who I saw during rehab (the physical kind) will never get as good as we do. Today was a particularly tinglely (my new word) day. I’ve been seriously over-doing it the last few days though. It sucks, but it could have been MS, a bad stroke, a car accident, another head injury….. so much worse it could have been. But I’m okay. Not as perfect as I’d like to be, but a heck of alot better than it was.
AnonymousJuly 4, 2007 at 8:55 am
[QUOTE=Teresa Anne]Spending your life fearing a return of GBS is such a waste. Chances are that it won’t come back and you will have wasted time on worrying. If it does come back, you have wasted time on worrying – because the worrying will have changed nothing other than your enjoyment of life. It will not change the outcome one iota other than to your detriment. [/QUOTE]
Reading this literally brought tears to my eyes. I am only a few months into my recovery, and some days I am so paralyzed by the fear that GBS will return to me someday (whether that be in a year, five years, or twenty years) and I feel so terrified, defeated, hopeless… But you’re right, Teresa Anne. The GBS will do what it will do, and if I spend my life being afraid of the “what ifs,” then I will waste a lot of time choosing negativity when I could be making happy memories with my husband and children. My body might not be what it was before GBS, but I want to be grateful for my abilities, not sad for my inabilities. I truly want to accept my experience with GBS as being part of my life so that I can move on unafraid, but I feel like I’m still fighting against it in so many ways. I struggle to let go of all my anger toward my body, my original doctors, all the people who didn’t believe me when I was so sick… I know it’s not healthy to hold onto all of this venom, but I just don’t know how to release it. I feel like if I choose to let it go, then that means I’m somehow saying it’s okay that people treated me so badly in the beginning, and it’s [I]not [/I]okay. But my holding onto it does nothing to them, it only hurts me, and I know that. I’m sorry; I know I’m just rambling, but I’m truly struggling right now, and Teresa Anne’s words resonated deep inside me. She has given me a lot of food for thought, and I really appreciate that.
July 4, 2007 at 9:44 am
Yes if you live your live thinking of you are relapsing well then we have to think carefully how others feel around us, they smell the fear and see it in our eyes. I have only one time thought it was happening, but I don’t think of it, I take one day at time and make the most of it. I try to have a good day because you never know when something hit you or some of your family members. I think what Teresa Ann said was so true and it was like she was speaking from my own heart.
And I thank from the bottom of my heart having you all here, because you have help me a lot getting my face together and realized that there is a live after having GBS
AnonymousJuly 5, 2007 at 1:10 am
Kinney, I have had 5 hospital stay relapses since my initial paralysis in Aug 05. I have had 7 stay at home relapses also. Do I get nervous, no. Am I worried that I am having another relapse, not for myself, I am always worried more about my kids and family, and who is around to help them out while I’m not able to. It scares my family and kids alot, I have been through it and I know I will get through it All again, If it happens again. You can’t live your life through your past. You have to walk forward, not walk backwards through the future, otherwise who knows what you’re going to miss. Of course no one can tell what the future holds, but only you can have a positive attitude to make the best of any situation you find yourself in. If you have a relapse, at least you will be the first to know what is going on, no surprises, no shocking discoveries, you will deal with it and get on with your life. Just for the record, with all of my relapses, none of them have been exactly alike. There are a few things that you can control, relapses will happen God forbid, whether you are prepared for them or not, and that is something you can’t control. I’ve tried a few times:o and no luck yet. L[COLOR=red]IF[/COLOR][COLOR=black]E is full of [/COLOR][COLOR=red]IF[/COLOR][COLOR=black]s[/COLOR][COLOR=black], No [/COLOR][COLOR=red]IF [/COLOR][COLOR=black]then its just LE! [/COLOR]
AnonymousDecember 10, 2007 at 6:13 pm
This is my first time posting to the forums, though I’ve been lurking and reading since I was released from the hospital in November of 06. I was diagnosed with a mild case of GBS – no paralysis, just difficulty moving, loss of reflexes in my legs and LOTS of tingling and numbness. What no one told me at the time was that even a mild case of GBS stays with you. I still have tingly days, though fewer and fewer. And I still tire easily. And ache. And of course, some nerve damage.
And then a week ago I got a cold, my first in over a year. I was able to control the fear until this morning when I started tingling, more tingling than I’ve felt in a long time. I cried. I begged god not to let this happen again. And then I logged on to the forum. Reading that sometimes other people feel their residuals when tired or under stress, and that so many others are scared or anxious, made me feel so much better. If for no other reason than to know that I’m not alone.
I have an appointment this afternoon with my neurologist. And I’m still nervous, no point pretending that I’m not, but I’m not going to waste anymore time fearing that it might come back. If it does, it does, there is nothing I can do to stop it. At least I’m going to do my best to push that fear away every time I feel it.
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