Side benefits of GBS
AnonymousApril 3, 2007 at 11:32 am
[B][COLOR=”SeaGreen”]I am being facetious of course, but I have had a lot of little side problems of a physical nature since coming down with GBS last November.
All of the following my Doctor indicates are as a result of the effects to my immune system, beginning with mildly high blood pressure discovered while in the hospital.
First I started out with small eczema patches on my body. Then I had a problem with acid reflux. Yesterday my Neurologist diagnosed me with having carpal tunnel syndrome.
I have never had any of these problems before and am wondering if anyone here has had similar experiences. Any comments would be greatly appreciated.
AnonymousApril 3, 2007 at 12:15 pm
Yes, yes and yes. I didn’t have acid reflux until I started on Neurontin years ago. And yesterday my neuro told me I have carpel tunnel in both wrists. Both my arms have a real mottled look to them and everyone asks what’s wrong with them. At least I can use the self-tanning stuff to mask it a little during the upcoming summer months.
I love the flavor of your post – just so lovely these benefits from GBS.
AnonymousApril 3, 2007 at 4:34 pm
Nate had that skin color on his legs and feet for a long time during the time when he was totally paralyzed and just stayed in bed most of the time.
His feet still get purply looking when they’re down. Its creepy looking.
He also was put on Nexium or Prilosec when he first got sick. Those are for Acid Reflux.
AnonymousApril 3, 2007 at 9:36 pm
I know your title was sarcastic but there are really side benefits of GBS. For one thing it cured me of restless legs syndrome which I struggled with for 15 years and that was an amazing blessing. But for me it has stripped away all the illusions about myself I had and didn’t know I had, and it made me think about how I want to live my life. When you have only so much energy and you must decide how to spend it, it gives you the opportunity to see what is really important. I have let go of so much crap I thought was important and gotten in touch with so much more joy, despite the constant pain and fatiuge. I am coming up on two years this May and had to admit that I have not improved in over a year. I know more recovery is possible, but I have had to accept that this may be as good as it gets for a long time if not forever, so have moved closer to acceptance. As a dear friend said to me this week it is possible to look at my disease as no disease at all but a way of life I am called to live which is potentially very meaningful. Just some ramblings to share (I’m on pain meds-don’t expect coherence:) Jeff
AnonymousApril 4, 2007 at 5:07 am
I am one of those boring people who always answers nil when asked about allergies. Well, i found out after my trachy was removed I am allergic to certain dressings. They wrote it all over my chart in big red letters. How exciting, I now have an official allergy (although fingers crossed i will never need surgical dressing again)
Jeff, i know what you mean. Sometimes I actually feel lucky to have had GBS and like to think I have come out the other side a better person. I feel like I have insights and understanding that i would never have gained without going through what i did. Having said that, still wouldnt wish GBS on my worst enemy.
AnonymousApril 4, 2007 at 12:35 pm
Very interesting- I too have started w/acid reflux about a week ago. Started w/chest pain, thought there was something wrong with my heart. Still have occasional sharp chest pain, but seem to be getting better. I am on prevacid 2x day now, if no improvement in a month, they are going to do an endoscopy, because after one year of taking naproxen as a painkiller, I could have an ulcer. Also, I just started taking neurontin about 3 weeks ago, maybe it is the culprit for the reflux?? They put me on neurontin for headaches. Good grief. I too, am plagued with after-problems!!
AnonymousApril 4, 2007 at 4:12 pm
please take food with your meds. i have found through trial and error that food and sitting up will calm the stomach after taking my neurontin. it was giving me problems until i tried just sitting up for at least 30 mins after taking my nightly dose, and eating alittle food with water at the same time. afterwards i fall right to sleep for my usual 4 hours.
AnonymousApril 4, 2007 at 4:55 pm
[B][COLOR=”SeaGreen”]wow…..thanks so much to everyone who has responded with what they’ve experienced since their onset of GBS.
I really appreciate your post Jeff. My sarcasm was not meant to be hurtful, but more of me showing my dark side of humor. I’m a big Monty Python fan so for those of you who are familiar you will understand. Apologies to any who may have been offended.
Jeff, I’ve learned that life is all about perception. Your post reminded me of that. Abraham Lincoln once said, “Most people are as happy as they make their minds up to be”. My glass has and will remain half full.
I also try not to “play” up inside my head as I’ve found there’s no adult supervision up there.[/COLOR][/B]:rolleyes:
AnonymousApril 26, 2007 at 3:57 pm
I too have eczema on both of my feet (although a foot dr told me it was “not” but instead a fungus)and at this point I have not developed any acid reflux and for some years I had the restless leg syndrome although that has not bothered me for years but I do have restless arm syndrome and for the last 14 years I have always felt like my arms were going to fly way if I did not hold them down, especially if I am sleeping. I was recently in a car accident and the insurance company decided that I had carpal tunnel in my hand- I was finally diagnosed with Reflex sympathic dystrophy. :confused:
AnonymousApril 27, 2007 at 1:33 pm
I am only comming up on 10 months post GBS and havent had any of the problems mentioned, except some of the skin discoloring mentioned but it has been temporary and will go away with time and then seem to come back again. It almost looks like I have bruised patches on my skin sometimes, but that pretty minor in the scope of things. The one good thing I got out of this is that my migranes have gotten so much better. I have suffered from migranes since 1987 and even though I still get headaches and sometimes migranes, I used to deal with migranes 5-6 days a week with just a regular headache the other days. I know that neurontin can help with migranes and I believe that is what is helping mine as I remember the awful migranes I experienced while in the hospital and rehabe before I got on the neurontin. I tried every medication made for migranes before GBS and finally gave up because most of them made me more sick, and a few made no difference so it wasnt worth it.
I agree with some of the people on here that though I wouldnt wish GBS on anyone as bad as it is… I am greatful in a way. Sure I can only walk a few feet with crutches (or now working on a cane) and I used a wheelchair for most of my daily living, and I deal with all the neuropathy, fatigure, etc. and sure I have nerve root damage from the spinal taps I received… but I am still greatful as I do appreciate a lot more things in my life now. Work used to be the most important thing to me and I used to work some 80 hrs on an average week, now I am down to 40 hrs with some overtime as required but for the most part I now draw the line at the end of the day to have down time which I never did before. I appreciate life in general more so than I did before and think I am a more patient person. Living life from a wheelchair isnt bad when you consider the full paralysis and it gives you a different perspecitve on things. Pre-GBS I always used to think that people who had a major life experience who always said that they learned to appreciate the little things in life, I always thought that meant things like the sound of birds singing, the smell of grass,etc. Although I do appreciate being outside after not being stuck in a hospital room and not being able to see anything outside (except for the sky from my viewpoint of laying in the bed), I have since learned that the “little things in life” are being able to go to the bathroom by yourself and not having to push a button to get help from the nurse, rolling yourself over in bed when you want to reposition, being able to feed yourself, being able to sit in a chair and many other things such as that.
AnonymousApril 27, 2007 at 7:00 pm
AMEN! I know exactly what you mean. After a year in rehab and in bed most of the time I am so grateful for anything I can do for myself now. I have to make myself take time out. Guess I’m trying to make up for lost time. When I first got outside I sat and studied a real flower like I was waiting for it to grow right in front of me. I’ve had people ask me how I can be so calm about this. I tell them because if I sat here and cried all day no one would want to be with me, and there are lots of people worse off than I am.
AnonymousMay 2, 2007 at 9:06 am
[QUOTE=snevets82][B][COLOR=”SeaGreen”]I also try not to “play” up inside my head as I’ve found there’s no adult supervision up there.[/COLOR][/B]:rolleyes:[/QUOTE]
Let’s hear it for no adult supervision!!! 😉
Snevets I love your avatar — how cute. Please tell me that’s a bunny and not a mouse, eckkk!
I hear you about the tone of your subject line. Sometimes joking about GBS and making light of it helps. But seriously, as I’m sure you know, many have already expressed my sentiment about the good side. There’s no doubt I’m different, and most of it for the better. However I still struggle with depression and feelings of isolation. But even that’s not all bad, I think it helps me to be more compassionate towards others who are suffering their own troubles whatever they may be.
Hmmm GBS as a way of life. Yes I can see that and that perspective actually helps with the acceptance factor. That’s probably my biggest weakness with all of this — my brain keeps trying to lead me back to the notion that I’m currently or will be shortly “back to normal.” That’s a big joke, and mostly it’s on me. It’s very dangerous thinking if I follow it and don’t pay attention. It usually leads me to push harder than my body can take for longer than I should. But then the pain and fatigue have their way of bringing me back to reality and then comes acceptance (sometimes slower than I would like).
I’m still so early/new at this — I’m at the 1 year mark right now so take what I say with a grain of sand.
AnonymousMay 7, 2007 at 5:15 pm
[B][COLOR=”SeaGreen”]hahahahahaha…….it’s a little kitten with a wool cap on his head Kathleen.
I’ve really had to learn the hard way with the “don’t over-do it” thinking. I have always had a hard time listening to my body and GBS has really turned that attitude around. 2 1/2 hours of cutting the grass leaves me fairly fatigued and my hands more numb and tingly the next day.
I guess it’s all about pacing and tons of rest. Others around you might “think” you’re better……like you got over the flu, but GBS doesn’t work that way.
I’m about 5 months out and the only things I have a great problem with are my hands and the fatigue. I go see another specialist for an Independent Medical Exam as required by my Company who provides my disability benefits.
I just keep reminding myself that I am not in control……[/COLOR][/B]
AnonymousOctober 2, 2007 at 11:14 pm
I have red spots that come up on my legs the last 3 years now. Dr. said the last time I was there that it looked kinda like eczema, Doc has not made his mind up yet what it is, but will probably end up seeing a skin Doc, the way it would get really red around the edge and almost nothing in the center of the spot. Some of them have eventually turned all the way red, and not just on the peremeter of the spot. They don’t itch tho and that is a good thing, but they just look bad. I also have purple spots on my feet when they are down and have lately noticed my legs from knees down have started to swell. Cannot even tell now that I have a shin bone because of the swelling. Folks it only seems to get worse with me as the years roll on. I have recently started having red and swollen arms from the elbows down. The list of problems just seems to be growing. Jeff, I too have lots of love and sympathy for others in the world who are sick and suffering with others problems besides GBS. I gotta get and take a ton of medicine so I can try to get to sleep.
Love and prayers to you all .
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