GBS and Continued Issues
AnonymousJuly 29, 2006 at 7:52 pm
I am new to this forum. I was diagnosed with a severe case of GBS in April 2000. Paralysis from toes to eyelids, vent, CCU for 5 weeks, rehab for months. I was 28 years old when I was diagnosed…training for a triathlon, graduate school, great job. Doctors determined that Epstein Barr virus (mono) triggered the onset of GBS for me.
The 6 years after onset have been a collection of ups and downs. The biggest struggle I have to this day is fatigue. I can’t seem to find the right combination of diet, sleep, and exercise to prevent or moderate the fatigue. And, the more stress I have in my life (whether good or bad), the harder it is to get moving in my life. I am still active. I ski, scuba dive; I run regularily. In fact, two years ago I ran my first marathon (albiet, slowly). I also started yoga and acupuncture.
So…to most people (except those who were at my bedside during the syndrome), I look like a normal, healthy, 35 yr old woman. But, what they don’t know (or see) is that I have to force myself to participate in my life. In fact, I probably have 5 good days a month where I feel energetic and ready to take on the day.
My biggest issue now is trying to get pregnant. We’ve been trying for two years with the assistance of fertility specialists with no avail. I have questioned the physicians about the syndrome and trauma I experienced as being an infertility factor. I have yet to meet a fertility doctor who has had a GBS patient. And, despite my exhaustive research on PubMed and Medline, I can’t find any studies ever conducted that look at the effect of GBS on fertility. Maybe it is not the GBS directly, but perhaps the chronic fatigue that does not permit for a healthy pregnancy.
The gift I received from GBS was the experience at 28 to realize how valuable life is. I don’t know if I would have ever really understood how precious my life really was until I was scared out of my skull that I was not going to live through it. Then, I dealt with the reality that I may never walk again. And, all those other little realities that come along with it. I can walk, talk, brush my own teeth, breathe without a vent, and so on. I am blessed.
Another gift I need is to reach out and talk to others who have gone through what I am going through. Nothing seems to give me more strength than to know that I am not alone with my emotions and struggles.
I hope that this message gives hope to others as well as open the door to my need for GBS friends.
Thanks for listening…errrr…reading. Feel free to email your experience, strength, and hope.
AnonymousJuly 29, 2006 at 8:55 pm
This is my first time on this forum. I, too, had GBS June 2005 from head to toe. I was 42 years old, very healthy, and walked a mile 3 to 4 times a week. I was on vacation in Myrtle Beach with my family when it hit me. I ended up in the MICU for 3 weeks on a respirator twice, almost with a tracheotomy performed but not needed, bladder and bowels shut down, felt like I was going to die, and paralyzed for 6 weeks. I went to rehab for 2 weeks and it was 2 months before I was able to go back home and see my family. I had 1 month of outside rehab also.
Today, 1 year later, I occasionally feel numbness in my toes and my fingers sometime have trouble writing. There are days when I feel tired or my back will bother me with mild pain. But I feel I recovered more quickly than I thought I would.
Like you, people said to me that I look as if nothing happened. It was a very frightening experience and I did meet someone from my hometown who had GBS and who was very supportive and we shared similiar yet different experiences.
I just want you to know that you are not alone. There are days when I will just sit down and reflect back to last year and wonder what the purpose was to all that went on. I have 2 boys (ages 8 and 10) and a very supportive husband. So they kept me going in that hospital and rehab bed.
You need to keep telling yourself it was all for a greater reason why things happen and pray for the fatigue to diminish. I know you will feel better.
Would like to hear back from you!!:) 🙂
AnonymousJuly 31, 2006 at 3:49 pm
It’s interesting to find that the cause of your GBS has been determined by your doctors to be Epstein Bar. I wonder whether others with this underlying disease process experience fertility problems, or whether there are other factors involved outside the two illnesses you mention. Personally, I had three pregnancies after GBS and found no difficulty in becoming pregnant. Best wishes for your success!:p
AnonymousJuly 31, 2006 at 5:36 pm
Fatigue has definitely been my worst residual of gbs, and 20 years on, some other horrible post gbs symptoms. However, I wanted to ‘discuss’ pregnancy with you. I ‘recovered’ from gbs by the end on 1986, got married in ’89 and when we decided to fall pregnant, I went to the gyne to see if it was going to be ok. He said that it wouldnt be a problem at all, and believe me it wasnt, in fact, Im sure I fell pregnant that same night ;). We should also take things into prespective, I was 24 and had not been on the pill for a long while before that (because of hepatitus), but had always used birth control. Fast forward to Jan.1997, when I remarried and we wanted to fall pregnant soon as we were both not getting younger. It took over 5 years to finally fall pregnant, we didnt go the fertility route because we both had children from previous marriages, but it was hard and emotional every month for those 5 years! Who knows what the differences were between the two pregnancies, but its interesting. This is a discussion that has come up often on the forum, and so many have said that they have had no problem in getting pregnant, and have had healthy and happy babies. I think that GBS is such an unknown syndrome, that unfortunately nobody knows how it effects each one of us.
AnonymousAugust 1, 2006 at 6:03 pm
I am so happy to hear that you remain active despite your fatigue. That is the residual I have. It does get frustrating. One thing I have learned is that exercise is extremely important to boost my energy for the day. Exercise has to be a priority for the rest of my life. I hope you find the balance for your daily living. I also feel it is extremely important to listen to your body and act accordingly.
I was diagnosed in 2001 with a more mild case. I was not in the CCU and not on a ventilator, and I was never completely paralyzed. It did take me about a year to get back to functioning the way I wanted to.
I have a question for you…
I am currently finishing my degree in occupational therapy- GBS inspired a career change. Since I did not spend time in the ICU or CCU with GBS, I am seeking information about what type of therapy you received from the therapists in CCU when you had very limited mobility and sensation? Did the therapists work with you on activities other than passive range of motion and exercises?
I am currently seeing a patient with GBS in ICU who is paralyzed and on a ventilator. He has no verbal communication. He does move his head and elevate his shoulders.
If you have any information, I would love to hear from you.
I wish you the best with your pregnancy!!
AnonymousAugust 12, 2006 at 9:02 am
Dana – Sounds like you’ve remained very active despite your fatigue. That’s probably been great for the emotional aspect, but I hope you’re remembering to rest between activities and taking it easy when you need to. My fiance had a severe case of GBS like yours last year. He’s come a long way, but that fatigue still gets him down. Good luck with the pregnancy issue! I’m your age, and I’d like to have a baby soon too!
Juli – I know you posed your question to Dana, but thought I’d respond as well. When Ben was paralyzed and on the ventilator, the one really awesome nurse who gave him his pain meds would come in and bend his legs and arms for him to keep him moving. She did that pretty frequently, and I think it helped Ben a great deal. His doctors predicted he’d be in a wheelchair for 1-3 years, and he was walking after three weeks.
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