AnonymousJuly 11, 2008 at 10:41 am
Hi I’m new to posting here. I was diagnosed with GBS in April of ’07. Since then I have had numerous other problems (too many to list). A couple months ago I had gotten a hyatal hernia. I looked up some of the medication the Dr. had me on and found that it is also used to treat Social Anxiety disorder. I was curious and looked it all up and realized that was a major problem for me. It always has been a problem but since GBS it has gotten severly worse. I still have hand and feet numbness so I still have problems walking. When I am in an unfamiliar place I start shaking and can’t even move. It’s worse in a public place. Has this happened to anyone else? The worse part is that I am single and my kids and my friends (all married) are tired of taking me out or going places. [/FONT][/COLOR]
AnonymousJuly 11, 2008 at 12:31 pm
I cant believe they wont go out with you!
My anxiety isnt as severe as yours, but I do get awkward in public due to vanity. I had a trach and now have a big scar on my throat and it embarrases me. I am still in a wheelchair and dont really like to go out in public with it. Can your doc put you on meds to help you?
July 11, 2008 at 12:47 pm
sorry to hear you are dealing with this and insensitive people in your life. I think anxiety has increased for a lot of us since GBS. I swear it is due to our nerves being out of whack/over sensitive, add on a dose of PTSD and we are a bubbling cauldron of “spaz”. Thankfully my kids have been very very understanding thru it all and have stuck by me and even been protective. My daughter did a report on GBS for her 4th grade class, so now her teacher knows why I don’t volunteer in the classroom or such. Before I had GBS, I would get freaked out in crowds…sweating, shaking, overwhelmed. And have been known to ditch my cart and leave the store during the holiday rush. Being afraid of what others were thinking of me in general, etc. Some days were much much better, others were not so good. That part is better now, but still suffer from generalized anxiety that pops up at the oddest times. Xanax has helped me.
this is what has worked for me….I would tell myself that no one was talking about me, no one could even identify me in a line up if they had to, no one was even paying attention to me because they were off in their own worlds or dealing with a bit of the same…being afraid I was judging them or whatever. I decided to try a little experiment. I stood tall, put on a smile, and was surprised at how many people smiled at me, said hello, and were nice. It has helped me feel much better in public after doing that lots of times. Breathing exercises help too. Talking to strangers used to leave me falling over my own words and looking and sounding silly, but now I pretend that what I have to say is very important and the other person really wants to hear about it. I also started randomly complimenting people, which is a conversation starter that puts the other person at ease and sets the mood for the interaction. I’m not saying jump right in, but small things might really help in big ways.
AnonymousJuly 11, 2008 at 12:55 pm
My friends don’t understand when I just can’t keep up. They try but they don’t have chronic illnesses. I end up being alone in my home a lot, but I do know that is my choice too. I am very private and not vane really in public, but maybe just self conscious–my balance is off, or the pain gets so bad in my legs when I walk, that I just have to stop and let the pain ease up a bit and people walk around me and look strangely at me sometimes, and I drop things sometimes. Maybe our residuals aren’t just in our physical limitations but also in our mental acceptance of those limitations being permanent? Our society has become a take a pill for everything, and pretty soon one pill cancels out another pill or makes that other pill stronger than what we need it to be-a vicious cycle. Just take what makes you feel the best. Just my opinion. Talk to your doc about how you feel and let him readjust your medications so you are feeling better. Emma
AnonymousJuly 11, 2008 at 12:59 pm
It’s not that they “won’t” go out with me it’s that they have their married lives and their busy. My kids (all adults) are pretty supportive. But they too don’t want to take me out all the time. The winter was hard because I was freaked out about walking on snow and ice (broke my ankle in December). I am seeing a psychiatrist and he gave me “another” anti-depresent. He’s already increased that once. I see him again next week.
I actually felt better when I was in a wheel chair. At least then people can see there is something wrong with you. Verses being wobbily on your feet, then they just think I’ve had a couple too many (over heard that comment at a sub shop).
AnonymousJuly 11, 2008 at 1:56 pm
Fairly odd mother, I reread my post and realize I came off kinda cynical. And God must have read it too, because He sent two phone calls from friends to offer their help, and they are coming to help me today…..I also take xanax and it not only helps my anxiety, but it has been the only thing to help the craziness of my jangled nerves-like feeling bugs crawling up my legs and severe itching inside my palms—within 10 minutes after a xanax the bugs and itching are gone. Know it is addictive, but am very careful with it and it really helps me. Emma
July 12, 2008 at 10:36 am
yea the xanax is addictive…I take half a tab which is half a mg…and it really does help with jangled nerves. My dr said he would rather send me to a shrink than perscribe it to me because of the chance of addiciton. A shrink wouldnt understand that this is not exactly a mental thing, and how do you explain that your raw nerves over react to things and send you into a tizzy? *sigh* Anyhow, I am also careful and the thought of it becoming addictive is always on my mind.
AnonymousJuly 12, 2008 at 2:24 pm
As the years have gone by, my social anxiety has lessened. Just remember that each of you had a traumatic experience that forever changed you. Your awareness of everything around you has been heightened. Your nerves can’t assimilate the same amount of stimulation that other “healthy” bodies can. The world in general has become nothing but noise and demands upon us. Xanax can be very helpful at moments ~ so can a cane or wheelchair!! To your health 😀
AnonymousJuly 12, 2008 at 6:42 pm
I noticed that being in a wheelchair made me more self conscious about doing things than before-just going to walgreens is a chore now-but it is getting better. I do believe depression and PTSD are residuals and complicate the physical ones quite a bit. I take exception, however, to the idea that shrinks would not understand the physical cause of social disorder or the trauma of what we have been through. I am a shrink and know many colleagues who would certainly understand what we are all going through-therapy can be tremendously helpful in dealing with PTSD and other residuals. Even though I am a shrink myself I sought some professional help to deal with post GBS life and it was a great relief to find someone to talk to and whom I could dump on without feeling guilty about burdening them with my problems. Meds are often helpful but talking therapy can be even better. One other thing Jackieharley, the color font you use makes it very hard for me to read your post. Jeff
AnonymousJuly 12, 2008 at 9:10 pm
I concur with what every one here says. We all have our PTS issues. I hated crowds and people for a very long time and still do to some extent. I have always blames it on the isolation of ICU and not being allowed visitors other than my immediate family. It was a very lonely time.
I can suffer from vanity myself. Someone mentioned the scar from the trach. My husband bought me three gold chains that when worn together, covered the scar. Over time, it has become less obvious and I don’t even think about it anymore. I was lucky though that there was no respiratory specialist available and had my trach done by a GP who did it the “old fashioned way”, stitching it in so my scar is not the “hole”, but rather a thin line with the stitch marks. With todays clunky jewelery fashions, there should be something that can work for you.
AnonymousJuly 12, 2008 at 10:10 pm
I have to agree with you that shrinks would understand.
Mine was on staff with his office on the same floor of the acute care rehab unit for all trauma patients that had life changing injuries or illnesses.
He visited me regular and I could talk to him about GBS and all of my feelings concerning it. He addressed many issues with me and let me cry a lot of tears. I have the greatest respect for him and the help he gave me.
I don’t need him anymore but see him as my Dr. is on the same floor. He gets a big hug each time I see him and he is all smiles when he sees how well I am doing.
I hope sometime you will be able to go out and not worry about what people think or if they are watching you. Your psychitarist may have to change or add medicines to see what works for you.
AnonymousJuly 12, 2008 at 10:52 pm
I want to Thank all of you. I wish I would have joined in on these forums a long time ago. My Dr. had me look up the website when I was in the hospital last year. So I’d come on occasionally to find things out – but never joined in. I see my shrink next week and I am going to print all this out for him to help him understand what I am going thru.
Jeff sorry about the font color – I realized it after it was posted that it was a bad choice.
I visited the Tavern forum before, maybe I’ll just go there once in awhile. 🙂 My daughter’s birthday party is tonight and of course it’s at a bar. And here I am at home.
Before I got sick last year, my ’07 New Years resalution was to experiance new things and to not be afraid to do things on my own. I was going to stop working 12 hour days and week ends. I was going to start enjoying life. So I flew to Florida by myself in March to visit my brother for a couple weeks. And by the end of April my experience of trying new things involved bed pans, wheel chairs….having my sister shower me and shave my legs for me….moving back in with my parents for a while. I was hoping ’08 would be better. Maybe it will be, now that I’m communicating with people who know what GBS is. I actually get surprised when someone knows what GBS is.
AnonymousJuly 13, 2008 at 12:15 am
Jackie-If you read many of our posts, our lives were changed as dramatically and quickly as yours. And someone here refers to being dealt a hand of cards, but it is our choice how to play the cards. In my area in Michigan more and more barrier free buildings,housing are being built-ramps are everywhere into the libraries and public buildings for me to use, scooters and wheel chairs are more prevalent and accessible in the grocery stores-retail stores have a ways to go. There are areas to go where you are out in the public but not in swarms on people. If the serious threads on this forum get too heavy for me, I go over to the lightsided ones for awhile for a smile and a laugh. Both threads are filled with so much info and support and kind words, and being able to talk to someone who understands you is worth its weight in gold. Maybe I’ll see you at the tavern sometimes too.:)
Jeff-I had a bad session with a shrink in the beginning and I had hoped it would help to have talktherapy with him, as we had worked professionally at the hospital together sometimes; but, you know when it came my turn to be the patient in his office, the main discussion was how much my copay would be and how many visits my ins. co. would pay for. I understand he has to make a living too, but on a half hr. or full hr., I’ve forgotten now, but I told him a few basic things to get us started, and by then my time was up. I left that office sadder than when I went in. Never went back. Now I realize I should have found another shrink to help me. In my area you are far and few between. This forum has been the best talk therapy for me I’ve ever had, and it’s free. The knowledge of so many on this forum is phenomoninal !! That jangled nerve pain is very real to me every day, especially when the itching is so bad, I want to claw my skin off-the Xanax helps immediately-I take ,25mg or 1/2 tab. Emma
AnonymousJuly 13, 2008 at 8:22 am
Thanks Ema – you are right about this place helping. Just for the couple of days that I’ve been active on here I’ve realized what I’ve been missing out on. When I’ve come on in the past just to read the forums I would feel depressed afterwords. I guess I was in denile. But after my “little” set back this past week I’ve realized that it’s time I start facing the facts.
As for the itching part for me it only happens when I forget to take my Lyrica. I tried going off of it a coupe of times and the 2nd time I said I don’t care how bad it get’s I’m going off of it. I got myself down to one pill a day and I lasted about a week. Between the burning and the itching I thought this isn’t worth it. So I went back on.
Thanks everyone and maybe I’ll see you at the tavern when I get back tonight:)
AnonymousJuly 14, 2008 at 1:28 am
Just some input. Dear [B]gene [/B]gave me some great advice when I first joined the forum. Ask my neurologist about neurontin (gababentin). I did, my neuro said it was a good idea and it helps with the nerve pain. I’ve heard of people at the forum taking Lyrica. Is it similar to the gababentin? I am also on Alprazolam for stress and muscle pain. I am unsteady on my feet and often bump into the walls. My hub cals me “shakey”. Yep I get some funny looks sometimes but usually people are willing to be helpful. I was at a baseball field trying to get to my nephew’s game. Of course it was far from where I parked and then I found myself at the top of a grassy hill. Jokingly, I asked the lady at the bottom if she’d help me up if I rolled down the hill. She came up to me and offered her arm down the hill and took me as far as the field I needed to be on. I’ve also had people almost knock me over bc I was moving too slow and they wanted to get ahead of me. At the bottom of an email I received said “Always be kinder than necessary, for everyone you meet is fighting some kind of battle.” Isn’t that so true? Hang in there!
AnonymousJuly 14, 2008 at 12:39 pm
Smiley, Lyrica and Neurontin are for the same problem of nerve/neuropathy pain. One works for some and one works for others. Personally when my neuro put me on Neurontin, he stated “it is the safest drug you will ever take, and you’ll be on it the rest of your life.” Well I ran out a couple times, got off schedule a few times, and wondered if it was helping—-all I had to do was not take them as prescribed, and I was absolutely miserable with leg and hand pain!!!!! I find Neurontin works for me and yes I do have to take more pills than the Lyrica, but when I googled them both, I felt the Lyrica had a lot more side effects. What matters most, is what works best for you!!! Emma
AnonymousJuly 15, 2008 at 4:30 pm
I’m a bit anxious when in a new place (Its rare, I live in a town with only 1,200 people in it). After this last bout with GBS, I have had some pretty severe axonal damage to what they tell me is Cranial Nerve #7. It runs the better part of the left side of my face. Kind of looks like a stroke victim….I only make the comparison because I have relatives who have been stroke victims and that’s the best way I can describe it (droopy at times, and really no expression on that side)
I hadn’t noticed it for a long time, till a friend shot a picture after I won a washer throwing competition, and I looked like the Dred Pirate Roberts or something, laughing up a storm.
Hang in there, and be safe.
AnonymousJuly 18, 2008 at 12:22 am
Went to Walmart last night, I was walking down the aisle toward a Walmart employee walking toward me. I smiled and he said “it looks like you are marching”. I said what? cause I wasn’t sure I heard him right. Yep, that’s what he said. I replied, unfortunately, that’s how I walk and he scurried past me, haha. I never thought of it as marching but when it’s late and I’m tired, I use my arms (swing them) to help my legs move. My PT said I was doing the over swing arm movement sometimes in earlier therapy visits. Ah well, happiness to all!
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