I’m a newbie to this, help?!
AnonymousJanuary 7, 2007 at 10:42 am
Hi, everyone! My name first name is Teresa. I am from Valentine, Nebraska, and work in the Physical Therapy department at the hospital. I do transcription work. I was diagnosed with GBS on December 1, 2006. At first the doctor thought that I had spinal meningitis but it was totally different the next morning from November 30th. On December 1st, I was transferred down to North Platte, Nebraska, where there are specialist that could help me recover and the right medication. It was really hard for me to loose feeling in my hands and legs and not be able to move. I had to touch my face to make sure that it was still there because I could not feel it and I had troubles swallowing. I lost strength in my left hand, face numb, trouble swallowing and paralyzed from the waist down. Talk about a scary feeling!! I am still in the hospital as of January 7th, 2007. One of my nurses suggested to find out if there was a chat room with others that had GBS, ssssssoooooo here I am looking for answers, I guess? :confused: That’s how I came up with my name of Confused rose. I had the IVIG treatment, 5 days worth and was in ICU for 5 days at North Platte hospital.
I keep asking why did this happen to me? Has anyone found the answer yet? I was walking 2 1/2 miles every night after work in the gym and lifting weights. Today I can barely lift a 3 pound weight over my head but before I could lift 10 pounds. To do a bicep curl I was lifting 40 pounds but now I can only lift 3. That is really heartbreaking!!! I have a son who is 12 y/o, and my Grandmother came from Hugo, Colorado, to take care of him until I get out of the hospital. How far is everyone walking now? I can only walk 60 feet before my legs get really tired. I’m also lifting 1 1/2 pounds with leg exercises and that even wears me out. Is this how you all started out with recovery? No, I did not have to be on the ventillator but I was very close! Too close for comfort matter of fact!! I am getting really frustrated that I am not back to normal yet, my mind is good and my arm strength is getting better but my typing skills are still not back to normal yet. It takes me 1 hour to type 3 pages and before I was able to type 5-6 pages in 1 hour. Enough about me for now, I don’t want to brag so much that no body will want to respond.
Talk to you later. Keep me updated as to how you are doing, OK?
AnonymousJanuary 7, 2007 at 10:48 am
Greetings Teresa Rose,
Welcome to your new family! Sounds like you are doing well – as expected. The most frustrating part of this all is your mind is good, but the body isn’t. It will be a slow recovery (some faster than others), but working on a patient attitude with yourself I think is very important. For me it seemed I could only tell how I was getting better by looking at a week at a time instead of daily. Also, since your mind will want you to go, go, go – work on rest, rest, rest. It is so easy to over do it with this illness.
There are tons of old posts to read that should help you understand your recovery. And I’m sure you’ll be meeting many members with lots more experience in advising than myself.
Also, we are here to listen any time. We are all known to have come here just to vent our frustrations.
Many blessings to you!
AnonymousJanuary 7, 2007 at 11:36 am
Teresa Rose I am glad you were able to find us and are able to correspond with us from the hospital! You are doing amazing well and have a long slow recovery ahead of you. I agree at first you can see daily improvements like moving a finger and move your hand. After awhile that will start to improve slower as you will only see improvements weekly and then bi weekly and then monthly. You will also have good days and bad days. Over do it and you will know it by how you feel. Exhaustion is the big part of this we all share. You have to keep that possitive attitude and you have a Son that will keep you going. I am 14 months into this and on the outside for the most part it is hard to tell that I have something wrong but on the inside I am always feeling different things tingling, a zing or a cramp here or there. It keeps life interesting. Listen to your body! I am one of the few here that is not on medication for the pain. I went to rehab for 6 months and then took 6 months off to catch up to things before I moved up to the next level of rehab. I just felt that was what my body needed but I still went to a fitness club to get into the water and not fight gravity in an aqua aerobics class. I try to walk and increase my stamina and breathing. I stretch and work on range of motion consistantly. At first I worked out on the circuit of machines without any weights and slowly increased. Now I am back in rehab working on going to the next level. Still watching to not over do it and trying to increase my total health. Like you I was very active and in good heallth. They think the GBS followed a sinsu infection that was not bad enough for me to go to the Doctors. I was totally paralized and had to learn to move each finger, eat, roll over, sit up, stand and walk. You are doing great in those areas. Just being able to do that much is wonderful. Keep working on this and you will well. You want to work those muscles to keep from getting weaker but you also have to rest to let the nerves heal. That is where time is needed they heal very slowly! That will take years! But as they heal you will see changes in your body a few times a month you will gain your health. It is a very scarey illness and is not very well understood. As you continue to read you will see how each of us are constantly changing and asking questions and then you see start to feel the same things and know you are getting better! Also you will be here to give those that are just finding out they have GBS some Hope! Remembering how bad you were before is part of the healing process that will replace the why me type of depression and frustration we all have gone thru! Chin up and post often!
Anyone have msn instant messenger you can add me to your contact list for live chat by using [email]email@example.com[/email] or use that to email me! Also the instant messages from this forum will go directly into my email to tell me I have a message! Make 2007 a possitive, active year!
AnonymousJanuary 7, 2007 at 11:39 am
Hi TR and welcome.
Recovery with everyone is different. In my case, it was nothing short of miraculous. Near ventilator, almost blind, and paralyzed in November of 2004, back to work Jan 2005, completed a marathon October of 2005. I’m not as strong as before, and I tire more easily, but then I’m getting very close to 60, too. Hard to tell what is residual and what is old age. There is also some residual numbness and vision problems, but nothing I can’t take in stride.
Good luck, join some of the fun posts, and know that we are here for you. keep us posted on your recovery.
AnonymousJanuary 7, 2007 at 11:48 am
Thank you very much for responding so quickly to my message. it really helped me!! I have been reading all the frustrations that other people are experiencing and think to myself that I was fortunate not to have a vent or to be put into a medication induced coma. I have some good days and bad ones also. I sure is hard to tell my brain to rest when my body is trying to tell me to rest! I still have not been able to find the happy medium between doing enough exercises or too much? Can you give me an idea?
AnonymousJanuary 7, 2007 at 11:59 am
I agree with vmac and everyone. As many members as we have that is how many different stories about their cases there are. Everyone is different! Listen to your body and build up slowly. You should be receiving rehab (both Occupational and Physical) do the routine they are building for you! If you over do it you will know! Listen to your body. You might feel your brain is in high gear and the body is in low….that is common. Just keep making mental notes of where you want to be and set your goals. Slowly your body will heal and you will be there soon! I try not to schedule two Doctor appointments in a day but sometimes it is not possible and I feel it the next day. I just take a day to recover and don’t push it that day…..that is when I do alot of resting…..the nerves heal better when you are horizontal from what I have read here. Some say that you should try and get 10 to 12 hours of sleep a day…..some can get by with a good 8 hours. Just listen to your body….if you over do it beleive me you will know. Next day or later that day you will know! Just like you say you can do 60 steps and the you get tired. You are already listening to your body. Maybe the next walk you do that day will only be 50 steps so you are working and exercising but not doing as much! Just that much of a change can make a big difference.
AnonymousJanuary 7, 2007 at 2:02 pm
I, like you, was very upset with the time it takes to get better. If it wasn’t for these people and this site, I have to admit that I’d really be in the dumper! It all takes time and patience. I also see a “shrink” that helps me get through all that I’m feeling. I developed GBS March 24,’06, was hospitalized on April 7th. I just started to loose function in my legs, but was not paralysed, and didn’t loose ability to breath. I was only in the hospital 5 days, but since being at home, (and i live alone) it’s been an uphill battle. I just started physio therapy, and they try to get me to do things way to fast for me to handle. As I’ve been told, we have to educate ourselves, and then the people who are around us, including therapists, etc. Our bodies need to heal and with the nerve damage that we have sustained, it will take awhile to do so. Everyone is different, so the “healing” time is different for all. I really and truly know how you feel and my heart goes out to you! Be patient, and maybe find someone to bounce your feeling off of, cause you will need to do that every once in awhile. I find it helps and it makes me feel better to know that someone cares.
Take care, and hope to see you here again soon
AnonymousJanuary 8, 2007 at 12:27 am
Even though I don’t have any kind of disabality, I think I know how to respond. Chin up, baby. I honestly believe, that the mind is the greatest healer. You may not end up healing as fast as you want, but you’re alive, and have the abilitly to do what’s right for you and keep a positive attitude. You may have seen my bitchy messages regarding my husband, he’s been taking sh** out on me and I found myself taking it out on others. We all have so much to live for, the ability to choose to be happy is a gift in itself. Don’t overwork yourself, just breath and smile.
AnonymousJanuary 8, 2007 at 12:31 pm
We are almost neighbors!!when you look at the forum family all over the world. I live on the border of Nebraska and South Dakota, a tiny town called South Yankton, Nebraska. Lived for over 30 years in Battle Creek, near Norfolk. I was dx in May 06, got my IVIG treatments and 3 weeks of PH & OT in the hospital. After hospital have been going to outpatient PT. I have gone from completely paralized legs to walking with AFO’s for drop foot on a walker and soon a cane. I add that I am age 67. So you being a young healthy gal, I think you can plan on recovery, tho, as all the members say it does take time. They have given you such great advice, as they did me when I first came on. This is a wonderful place to learn about GBS/CIDP. I have no idea how this hit me, but I keep the faith. I got a power wheel chair to get around when I dont have the AFO’s on and the grandkids love it. They were a bit shy about the whole thing at first, but your little guy will adjust till you are back running and playing with him. my PT really pushes walking and light exercise. Wishing you the very best, Regina
AnonymousJanuary 8, 2007 at 2:05 pm
Hi, Teresa Rose,
If you haven’t gotten the booket yet, please do so. It may answer many of your questions. GBS usually takes 3 months to 2 years to recover. You sound like you are coming along quite fast. I found that I could not look for progress day to day. It is like watching your hair or nails grow! It will frustrate you. I found friends who asked about my daily progress to be annoying. They just don’t understand. By the third month I wanted to smack those who said, “Hang in there.” That was easy for them to say. Let them try living alone and wondering how many months you will need to recover. I found that I underestimated the amount of time I would need. My GBS peaked the second week of October 2006. I expected to be over it by Thanksgiving or Christmas…..not really. Still not walking…but I see it coming soon.
I wonder why all of these nice people had to go through this nightmare? I would like to do a survey of all of us to see what we have in common. If the doctors can’t figure it out, maybe they haven’t asked the right questions. You sounded really healthy before you got this. Does your doctor really think a sinus infection did this?
You are blessed that you have family – that makes a BIG difference…trust me..as one who doesn’t.
Reading what others are going through will break your heart as well as make you feel better that you are not as bad as they are. I had long silky blonde hair that was down to the middle of my back. Within 3 days it knotted and matted. I think my hair tensed up like my mind and body did…..how are we going to get through this???!! I could not get it unmatted because my fingers were too numb to feel it. I started 3 months later to try and undo the damage. That was 3 days ago. I may have to cut it really short but I am trying not to. I cannot explain how bad it looks. So when you are feeling down, look in the mirror and say, “Well, i don’t have to cut my hair off!”
Hope this helps……I cannot give you a mantra or magic way of thinking to make you feel better…because I haven’t found one. I wish I would as my patience is wearing thin……but what choice do we have. Let your family keep your spirits up.
GBS Sept 06 started
Oct 06 peaked
Jan 07…..still recovering
GBS March 86 milder case
AnonymousJanuary 10, 2007 at 11:02 am
Hi, Regina! I am very excited to find someone that is closer to me so I can communicate more, by phone if wanted to? How long did it take for your feeling to come back to your legs? Did you have a problem with disassociation of your legs? Meaning, did you lose the sense that your leg below the knee is not there anymore? Has anyone else lost that feeling? I have that problem right now that I just totally forget about my lower legs to pick them up and put on the foot plate of the electric wheelchair. Has anyone else had the same problem? It is very frustrating!!
Let me know if you want to get together sometime when we are both back up on our feet totally and driving again.
AnonymousJanuary 10, 2007 at 9:55 pm
Hi! I am a neighbor from Iowa! I was hospitalized locally for five days in August, 2006. However, I was not diagnosed with GBS until October (at Mayo Clinic)!!! Luckily, I had a mild case. They treated me with steroids before and during my hospital stay, but were uncertain at the time what exactly was wrong with me. I am finding out this kind of problem can take awhile to heal. My extreme fatigue has improved dramatically the last month, but my legs are still stiff, hurt and get a really cold feeling inside. I am back to doing almost all the things I did before (except my CURVES routine). Hang in there!!! People on this site say that GBS means “getting better slowly” and they are SOOOO right!!! 🙂
January 13, 2007 at 3:45 pm
I know what you are going through. I saw very little improvement the first two months but am now seeing improvements every few days. I can’t walk yet but my legs are getting better and just beeing able use them to flip over in bed is a great help.
I remember after 5 weeks in the hospital, asking if this was what the rest of my life would be like. The OT therapist assurred me that it would get better. I didn’t see how at the time, but life is good now and I am seeing progress.
Everyone’s case is different but things will improve. Keep working on your therapy and be patient. It takes a long time before things start to improve but they will.
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