All about Guillain-Barré syndrome: Painful stiffness and other residual symptoms following GBS

I am in my 10-11 month since I contracted GBS. Up to mid-August I felt the earlier stiffness I had in my legs and lower back was improving but since then it seems to have regressed; hence my concern. I have read various literature on GBS but I have not read

BRIEF HISTORY
Feb. 10/03 Felt a tingling in finger tips while vacationing in the UK.
I had a bad sore throat - was under some stress and a bit run-down. 5 days later legs started to fail.

Day 1 Feb. 16 Entered Frimley Park Hospital (UK).

Day 3 Unable to walk - legs and arms paralyzed (could rotate my feet at all times).

Day 4 GBS confirmed following a lumbar puncture and immunoglobulin started.
Blow test was 3.1. (Day 8 it was 1.41. By Day 21 up to 2.95). Ventilator avoided.

Day 8 Passive physiotherapy started.

Day 24 Stood very shakily for 2 mins.

Day 28 Discharged to Unsted Park Rehabilitation Hospital.

Day 45 Walking 400 yards. Legs/lower back v. stiff; it begins within first 10 paces.

Day 60 April 15 Discharged and returned to Vancouver April 17.

MY KEY PROBLEM
On return from the UK the prognosis for recovery seemed good. I started walking around the top of my driveway and then advanced to walking around the block. Later I was walking about a mile with a rest and stretching halfway. While the stiffness still existed it did tend to ease and I had an occasional hit on the tennis court for 20-30 mins. with 1 or 2 steps to reach for the ball. My walking seemed more fluid and less jerky.

However, from about mid-Aug I started to feel quite stiff and walking was getting painful so I stopped and have done minimal activity since then.

At 3 a.m. on Aug. 17 I woke feeling quite stiff in legs/back; 'fizzing'on my shoulders and left side, lower rib cage for the first time; and felt I was not breathing fully. Being worried, I went to LGH emergency at 3 a.m.

After an examination by Dr. Watt, indicating no obvious problems, we decided I should return home - 7.30am.

The stiffness is in my quads, glutes and knee of my left leg and across buttocks. Right leg has lesser stiffness/same area. The stiffness is not a cramp of the usual spontaneous type but is probably better defined as a considerable 'tightness' in my muscles which exists 24 hours a day; it makes walking a bit jerky even difficult at times. The stiffness usually increases with walking or when I have been sitting for a while.
In the mornings on waking it is sometimes difficult to bend my left leg as the knee is quite stiff; straightening my legs on waking in the a.m. often causes a spasm in my lower back until I get up and move around.
Hot water showers tend to increase stiffness.

The stiffness/tightness stays all day with varying degrees of effect. This condition has existed since about March 30 when I first started to walk again. (Not so concerning are tight bands around ankles and thumbs, fizzing/sensitivity in my hands and left hand will not close yet).

I have had four sessions of acupuncture for back/legs, which helped only for about 24 hours after each session. I have regular sessions of massage, which helped initially. I have had physio/OT at LGH from May 8- Sept 10 for1.5 hrs/week. I do regular exercises at home with stretching and some work outs at a nearby gym.

I still have this stiffness at Dec 30/03. My specialist advised her nerve conduction test 10 weeks ago indicated my motor system was good but the sensory system had a way to go and might not repair fully.
On Jan 7 she advised I had much the same condition and might have significant recovery in a years time(a longer recovery period because I’am 71). I could push myself as much as I felt reasonable without damage to the nervous systems. Last year my wife and I were trekking in Nepal and in California so this year has been a bit of a loss!

Patrick Hill
01.2004