|The Vexed Question
of Residuals in GBS
Lawrence Kaplan and Robert J. Gregory
First published August 2004 (vol 10, no 7).
Case A: David, aged about 50, was carrying an extremely heavy and stressful workload. One day, he noted tingling in his feet, then peripheral neuropathy. His physician claimed, "She'll be right," in typical Kiwi optimistic fashion, and David carried on. With some walking and breathing difficulties, acute leg pains, and generalised nervous aches and pains, David continued to work, albeit at a reduced and less effective pace. He noted that he had virtually no knee reflexes, that he slept 14 hours a night and was still exhausted, and endured a variety of "system problems," such as diverticulitis, thyroid failure, and depression. A visit to a different physician led to laboratory and neurological tests, and a diagnosis of GBS, nearly a year later. David began thyroxine treatment, but there was nothing that could be done at that late date for the GBS, nor for continuing symptoms.
For the next 10 years, David continued to have extreme leg pains, generalised weakness, fatigue and tingling sensations that sometimes kept him awake at night. Gradually these aches and pains left, but then reoccurred periodically. The symptoms abated for the most part after 10 years. But, at about 15 years from onset, David noted shortness of breath, a marked lack of endurance even though he retained an ability to handle tasks that required muscles, fatigue, and the return of some tingling and other painful sensations. Currently he has concerns about the trajectory of the disease and what may lie in his future.
Case B: Philip contracted GBS in 1981. He was ill for two or three weeks with flu-like symptoms, then diarrhoea, and numbness of legs and fingers. Slight paralysis of his legs followed. This progressed without his doctor being concerned, until he became about 30 percent paralysed. It was at this time, the end of the third week, that his medical practitioner hospitalised him. He was promptly diagnosed with GBS. Due to the severity of the disease, and as it rapidly progressed, he spent the next two weeks in cardiac intensive care. Three weeks' nursing care was followed by two weeks' rehabilitation. Plasmapheresis was not an available treatment at that time. At week six, Philip was released from hospital, against the doctor's orders, but he did continue outpatient rehabilitation for another eight weeks.
From 1982 through 1983, Philip gradually increased his work activities to 10 or even 14 hours per day, plus included bicycling and mild sports as part of his continuing self-rehabilitation. He hoped to build greater endurance. From 1984 through 1994, Philip succeeded and led a fairly normal life, but still felt various residual effects, including constrained breathing, frequent and fast onset of fatigue, sudden feelings of complete exhaustion, and tingling sensations between his shoulders. He also noted back and leg soreness, aching knees, and persistent discomfort when laying one knee against the other. Philip also found he had clumsy feet and fingers. He noticed squeakiness in his voice. From 1995 through 2002, Philip led a very active lifestyle, with reduced impact from the GBS residuals. He worked eight to 12 hours per day, led a sports club, and engaged in physically demanding sports between eight and 20 hours per week. Symptoms such as constrained breathing, fast onset of fatigue and exhaustion, and back and leg soreness were rare. Though he still had tingling sensations between his shoulders, he had no aches in his knees, and only occasional discomfort from knees adjoining or becoming clumsy. He stated that although the residuals had abated significantly, when they occurred, they were intense. Symptoms lingered, and quickly reappeared if and when his activity level decreased.
In 1998, Philip was diagnosed with a heart murmur. In 2000, he had sinusitis and prolonged bouts of upper respiratory infections, requiring surgery. In 2003, the heart murmur led to a repair of the mitral valve, and during his period of rehabilitation, GBS residuals returned in the form of increases in exhaustion, sudden onset of fatigue and constrained breathing. Now aged 48, he hoped for a quick and easy recovery, but that did not happen. Six months later, he felt he had regained only half of his activity levels. He suffered soreness at the incision site, bouts of sudden fatigue, and frequent onset of constrained breathing. An extensive series of diagnostic tests revealed nothing. His medical professionals, knowing little about GBS, let alone about long-term residuals, had no opinion regarding this conclusion and deferred to a diagnosis of "de-conditioning". This ongoing physical incapacity, mixed with the medical professionals' inability to accept the relevance of GBS, brought on depression as well. Ten months following surgery, a significant return of GBS symptoms was evident, including "crashing" and extreme fatigue after even mild exercise. These symptoms collectively were sufficient to be rated as debilitating.
What can be done?
GBS symptoms and residual effects do present a challenge, and are very important to the individuals concerned. Nurses can help in a number of ways. Perhaps the first and most important point is for nurses to be aware that those who have had GBS are few and far between, that most recover and that persistent optimism is valuable.
In addition, however, it is important to really listen to GBS patients, whether in an acute stage, or throughout the rest of their lives. Their bodies and nervous systems have been affected, and they may well have quite unique problems and issues to face. As with other invisible disabilities, families, friends, neighbours, work mates, and even health care personnel, may ignore complaints. The continuing pains, aches and fatigue that those who have had the disease report are real, and should not be lightly dismissed or ignored. Individualised treatment plans and actions, careful, patient instruction about anatomical and physiological terminology as related to their case to help them communicate and make sense of the unusual sensations and deficits they may encounter, and empathy for these people will all prove helpful.
Further research can be of value to patients, families, and other caregivers, for not enough is known about recovery and rehabilitation from GBS. Certainly the long-term effects are not well understood, and need to be studied.
1) Steinberg, J. S. (1998) Guillain-Barre Syndrome: An overview for the layperson. Wynnewood, Pennsylvania: Guillain-Barre Syndrome Foundation International.
2) Parry, Gareth J. (2003a) Residual effects following Guillain-Barre. The Communicator, GBS Newsletter, Spring, 5-6.
3) Parry, Gareth J. (2003b) GBS and CIDP -- what's new? Proceedings: Inaugural Conference of the Guillain-Barre Syndrome Support Group New Zealand Trust, 24-27 April, ed Bob Stothart.
4) Bourke, C. (2003) Psycho-social aspects of GBS. Proceedings: Inaugural Conference of the Guillain-Barre Syndrome Support Group New Zealand Trust, 24-27 April, ed Bob Stothart.
|Disability After Recovery From GBS|