Reply To: Does anyone deal with Cronic muscle pain, fatiuge and Limited activies?

August 3, 2015 at 6:17 pm

YES, YES and YES. I was diagnosed with GBS 15 yrs. ago. I had the “full course” as they refer to it. I was hospitalized, in ICU, and on a ventilator, and totally paralyzed from neck down or should I say feet up to head, hands included. I insisted on being released one day off the vent, mainly since I was frightened of the bacteria in the hospital and didn’t think I could recover there. I also contracted pneumonia from the vent. My husband agreed and, finally, the neurologists after many tests and proof of professional in home healthcare, released me. At that time, I couldn’t move my body and had not even been in a wheelchair. I was told that I would probably only have 30 minutes of energy a day and I would have to choose my energy time well. The energy prognosis was true at first, it took and still takes a lot of energy just to hold my head up. After about 3 months of physical therapy in my home I was able to move my limbs again and slowly,by God’s good grace, resume somewhat of a daily life,although with limited activities. There have been times when I felt I have exceeded my expectations and limitations. Although I have relapses, extreme headaches that last sometimes 3 mths, numbess in feet and legs, pain in shoulder and neck,and very fatigued, I am able to function within moderation. There are many things I would like to do but, physically can’t. It is hard to accept, but am grateful for what I can do. I do know that “pushing it”doesn’t always work for us, it sometimes shuts you down. The older I get, some of the symptoms and especially the fatigue are greater, but out of the blue, comes a good day. Stress is a major factor in all of this. Learning to stay in today and accept that “it is what it is” isn’t easy, but a must. I lost my husband five years ago to a long battle with colon cancer, it was the hardest thing I’ve ever been through, especially with little energy and bad headaches from the stress and sadness, but God gave me what I needed. It’s a journey.