Guillain-Barre Syndrome

[roswellchick]

My husband was diagnosed with GBS on 01-26-08 and began Plasmapheresis on 01-27-08. One of the early symptoms was excruciating pain in his legs and feet. He was "fortunate" as the paralysis was confined to his legs, feet, and hand. After plasmapheresis, he regained movement in his legs and has gradually increasing movement/control of these limbs. However, the ongoing sympton is the extreme pain despite the heavy-duty painkillers like oxycontin40mg, oxycodone, percocet, neurontin, naproxen, and metaxalone. While my husband was hospitalized, the only painkiller that worked was IV dilaudin. His legs and feet still cause excruciating pain, especially after the Physical Therapist exercise regimes,

Did anyone else experience this level of continuing pain? What combination of painkillers worked, if any? Can anyone help?? I'm so afraid that all these painkillers are going to cause an OD? Help!!

[frank bullitt]

Can't say that my pain was excruciating, but it is somewhat difficult. I can tell you this. GBS
affects every single individual differently. I was diagnosed in Nov 07'. Sometimes I feel worse now than when I was in the hospital. Tell you husband to keep fighting the fight every day. Most people do get better, or at least that's what everyone tells me!

Good Luck!
Frank B.

[mdirksen]

Wow, this sounds like my father. My father was diagnosed on Dec. 10, 2007. On Dec.11th he started plasma exchange for 10 days. He came home on the 23rd. He is still struggling. Up until yesterday he felt nothing in his left leg and left hand. His right is not all the way numb. Yesterday he started having excruciating pain in his bad leg. We hope this means that the nerves are healing, wehave been told they didn't know how much damage is permanent. This has been so scary for our family. My father is now 61 and has always been very active, now we have to assist him with everything including showers. He cannot hardly get up the first step into the house. He has also been diagnosed with Vasculititis. He is being treated with Neurotin, Cytoxin, and Prednisone. How long is this pain going to last? Is it normal? Please help.

[hutsky]

for roswellchick and mdirksen,

I developed GBS in late Sep '07 at age 73. I was otherwise in good health. Apparently the extent and damage varies from one victim to another--some more severe than others. My experience was rather severe--intensive care with artificial breathing, paralysis from the neck kown. I was hospitalized for three months, the first month intensive care and treatment, the last two while beginning therapy. I still receive therapy to improve walking and balance.

Pain--certainly. Any touch was almost unbearable. Your periferial nerves have all been stripped of their protection. I had morphine for a short time but then refused it. The oral stuff probably helped some but did not eliminate the pain.

My message to both of you, and your husband and father, is to have heart--you are dealing with the most difficult phase of this dreadful condition. The shock is over an you are beginning the recovery stage. As I have been told, and from my own experience so far, you do recover. It is slow and comes in discrete packages almost daily.

In my case, it was like starting all over from about age one. All of the motor skills had to be relearned. I went from not being able to move in bed, feed myself, bathe, or stand or walk to the point where I now can walk with the support of a cane. I can walk short distances unaided but it not with a normal gait. My biggest residual problems are now the numbness in both feet and lower legs and some numbness and tingling in my hands. I believe these will continue to improve.

I can assure you that a tremendous benefit to me during this ordeal was the unselfish support from my family. They were there with me every moment throughout the ordeal. The therapy I have taken helped very much--not so much from the activities but from the expertise of the therapists in knowing when to move from one stage to the next.

I hope these words are of some help to you. Again, it will get better.

[sharonkrogh]

My sister has GBS now for 4 yuears. At the time she came down with it she had no medical insurance so she had to fight this without a lot of help and by the time she was diagnosed she had nerve damage. She now gets pain in her legs that is like a cramp she wants to know what if anything she can do. The doctors tell her thay don't have a clue how to help her. So does anyone have any ideas I can pass on to her. Thanks

[Rosie N.]

My husband was diagnosed with GBS on December 12, 2007 at the age of 75. He was in ICU for a month, residential rehab for 6 weeks, and now, 8 months later, is having therapy twice a week. He walks without a cane now, and is working on balance. His biggest discomfort is extreme pain and numbness in his hands and inability to use his fingers for any precise action. He is starting to type now, but very slowly and using only a few fingers.
None of the doctors can offer much advice except to increase the medication, Neurontin. I want to find a specialist somewhere, anywhere, who can offer him some treatment for his pain. The problem is compounded by his depression and feelings of despair, although he is taking an anti-depressant, Cymbalta.
If anyone can offer any suggestions, I would appreciate it.
Rosie N. in Montana

[hutsky]

sharonkrogh,

I wish there was some advice to offer about your sister's pain but I do not have any. She has dealt with it longer than I since my onset was just about a year ago. From what I have learned I doubt that any earlier diagnosis or treatment would have prevented the nerve damage. While the severity varies from one individual to the next, the nerve damage appears in the early stages (first couple of weeks) for GBS. I had excellent attention rather early and still suffered extensive nerve damage. The Neurologist explained to me that some of the nerves will repair and some will not. That has been the progress with my recovery. My lower legs and feet are still painful but I am walking, albeit with discomfort and some difficulty. I always dread taking the next step, but I do. I try to walk each day--today I made just over one mile.

There are medications that supposedly lessen the pain but they do not seem to help me so I discontinued them a couple of months ago. While there seems to be quite a bit know about how GBS acts on the body I have seen almost no medical treatment that will prevent or lessen the impact. The biggest help for me has been knowing that I am not alone--there are others who have dealt with it, some not as bad and some worse that I. And, of course the therapy that helped me regain many of the physical functions that I lost.

[hutsky]

Rosie N.,

Your husband's situation sounds somewhat like mine. He is just a couple of years older than I, and his GBS onset was about three months later than mine. I was hospitalized for three months with total paralysis below my neck. However, over the past six months I have recovered much functionality. I still have difficulty with my feet but at least I am walking wthout a cane. Like your husband, I initially had severe problems with my hands. I could not grasp anything, sign my name, or type on the keyboard. However, my hands are now almost back to normal.

From other victims I have learned that most cases vary with the individual in severity as well as recovery. My recovery may not reflect that of your husband's however it may give him some hope and motivation to work toward his own recovery. I recognized most of my improvement coming after about the fourth month. The therapists who worked with me almost daily attributed much of the successes to my attitude and hard work toward trying to achieve the goals they established. I must admit that I had doubts at times that any of the problems would improve, but most have. I just decided that I would take what came and be pleased with it, and that dwelling on what did not would not help in the least. I tried to identify and focus on the very small improvements that seemed to come about almost daily. I was thrilled the first time I fed myself, moved on my own from the bed to the wheelchair, stood on my own, took a shower, took my first step, walked without aid, and the list goes on and on. I am thankful for each of these achievements. I am also thankful for the wonderful attention and help extended to me by my family, friends, and the tremendous professional people who looked after me.

I am only guessing but I would surmise that your husband is in the period where he may experience some more recognized improvements. Many of us are visited by this condition with no knowledge whatsoever of what to expect. It strikes a devastating blow and leaves us only to doubt. It helped me tremendously when my therapist introduced me to an individual who had progressed through almost a total recovery after five years. He kept reassuring me that I would improve. It was easier to believe someone who had experienced the same things.

I hope your husband can sustain a positive outlook and rapidly regain improvement in his hands. Keep posting his progress.