Patient Stories

Debbie’s Story

My name is Debbie Buckley and my GBS story started 6 year’s ago in February of 2010.  I was a very healthy active 53 year old mom of 3 grown sons.  I exercised on a daily basis, ate healthy and really worked hard at trying live a healthy lifestyle.  I always assumed that if you took great care of your body it would re-pay you by not getting sick but that was not the case this year.

My husband and I took my youngest son Tyler who was a senior in high school car shopping as he was off to college in the fall.  It was a beautiful sunny day but I just wasn’t feeling right. I felt achy and malaise as if I was coming down with the flu so I thought I just needed extra rest and went to bed a little earlier that night.  A few short hours later I woke up with with a very strange burning pain in my kidney area of both sides of my back that I have never experienced before.  As the pain intensified with every passing hour my husband thought I had a kidney stone, so off to the ER we went that Monday morning.  After blood work and a urinalysis was done I was told I did not have a kidney stone and that I probably pulled a muscle in my back but just couldn’t remember how or when.  I have had pulled muscles in my back before with all that I do and knew this was something different.  My husband agreed as he is a Dr. of Chiropractic and has helped me in the past with muscle strains and sprains.  They sent me home with oxicodone which only took the edge off the pain and with each passing day and sleepless night the pain and burning continued to intensify until it was so excruciating that my husband and I both knew that I had to take another trip to the ER.  P.S. I was given the same pulled muscle diagnosis and was sent home once again!  By Friday night I did not know how I could possibly get through the 5th sleepless night in a row so I didn’t even bother trying to sleep. I just paced through the house for hours to try to let my poor husband get some sleep who also hadn’t slept all week.  It’s now Saturday morning and I am in excruciating pain not to mention exhausted from lack of sleep so my husband decided to take matter’s into his own hands and make some calls to a couple of Dr.’s he knew and within an hour I was admitted.  We thought thank goodness, we’ll finally get some answers.  Since we do not live close enough to a big city that has a teaching hospital I spent 6 days at our local hospital on morphine and had very little testing being done so needless to say I was going downhill fast.  On the 6th day I developed Bell’s Palsy on the right side of my face and my husband and son’s knew they had to transfer me to a hospital that was better equipped to diagnose me. Our eldest son Jason is a Pediatric Cardiologist who attended medical school in Tampa 3 years prior and Ryan our second son was a medical student that year in Tampa so the contacts they had made while interning were able to help get me admitted into Tampa General Hospital. Off we went all drugged up with morphine to make the 2 hour trip to Tampa but turned out to be the best thing for me.  I spent 4 days with tests being ordered and preformed around the clock. By the 5th day I started complaining as I was in and out on the morphine that my toes hurt and were very numb.  My Neurologist  ordered a spinal tap which led to finally solving the medical mystery.  I was diagnosed with Guillain Barre Syndrome.  I have never heard of any such disease but my husband and son’s have so of course they were relieved that there was finally a name to what was happening to me but very nervous of the possible outcome. Because I had a mild case with atypical symptoms it was a very difficult situation and hard to diagnose.  I did not have the initial numbness, paralysis and weakness in my legs that I found out a lot of GBS patients first experience.  Weeks later during my re-cooperation I did remember that as I was out walking for exercise a few times with my husband months prior to getting sick my feet kept getting numb and the numbness traveled up one leg a few times.

After finally being diagnosed I had to continue on morphine around the clock because it took 2 days for my Dr. to get the authorization from my insurance company for the IVIG treatment.  I received the treatment for 4 days at 4 hours a day and after the first round of treatment I felt amazing compared to how I had felt the previous two weeks so I thought “Yay” I was ready to go home!  I was one of those impatient determined patients who thought as long as I’m feeling good I can walk by myself to use the bathroom.  I was so wrong!  I fell twice and was very lucky not to have broken a hip or worse hit my head so I realized I better chill out and listen to the nurses’s, my husband and my son’s who were all so amazing and patient with me through this ordeal.  I didn’t realize that after being in a hospital bed for 2 weeks my legs would be like rubber and that it would be very difficult to walk.  I’m a petite small boned woman who before this illness was a very healthy 104 pounds but had lost 8 of those pounds therefore lost a lot of muscle tone.  I knew then I had to do what I was told but was also very determined to get behind that walker and start my slow laps around the nurse’s station.  With each lap they cheered me on so of course that gave me the incentive and drive to keep pushing.  Within a few days my Dr. told me what I wanted to hear, he said I can go home, which was 2 days before my 54th birthday.  Of course I was very happy but I also knew it was not going to be a quick easy road to recovery none the less I was so ready for my two hour trip home with my little bag of med’s I would need to manage pain.

My only residuals are permanent nerve damage in my toes and in my back.  I feel pain and numbness off and on everyday in my toes and muscle pain in my back as it was explained to me that the nerves attached to the muscles are damaged therefore the muscles in my back are not getting the proper nerve supply which makes my muscles very weak.  I’ve been able to manage pain with gabapentin, a low dose muscle relaxer and sometimes anti-inflammatories.  Before GBS I’ve always been into fitness and exercised almost every single day so I decided that I was going to try hard to get back into exercise and hopefully take less meds.  I’m happy to say that although I do live with residual pain on a daily basis I do get great relief through my exercise regimen.  I’m back to walking 2-3 miles per day, practice yoga which is great for my back muscles and for fun I do Zumba.  It did take a while after GBS to build up to all that exercise but I find the more I do the more I can do!  When I came home from the hospital I thought my life as I knew it was over.  Although I was lucky enough not to have a severe case of GBS I still could not imagine being able to do all the things I had to do and enjoyed doing, like going to work, caring for my home, gardening and exercising but I also knew not being able to do these things was not an option for me.  I do have to remind myself not to over do it as I find I fatigue more easily then prior to GBS so I just go with it and take more breaks.  If your reading this chances are you are also a recovering GBS patient, please don’t loose faith and do your best to fight your way back even if your life has to be altered in some ways.

I feel very blessed that I’m still here to share my story and also extremely grateful to have a wonderful family that was such an awesome support group throughout my ordeal. I think when a loved one gets sick it is vital for their recovery to know that they have the understanding, love and support that they desperately need.  I also want to say how wonderful the Dr.’s and nurses’s were in Tampa General Hospital! Such and amazing team of professional’s!

I also want to thank all the staff of the GBS Foundation International for all the work that you do! I look forward to each newsletter that comes in the mail.  It’s informative but also inspiring which gives gives me the support and strength that I need to continue to move forward in my life.

Sincerely Yours,
Debbie Buckley