Question about the healing process in adult GBS

Hedley –
First of all – welcome to one of the most supportive forums on the net! You’ll find that the information shared, the honesty of the members, the suuport you will recieve is priceless. If you’ll take time to read the “Does Anyone Recover 100% thread you will find that a lot of us carry residuals from this syndrom. I am just 5 months into recovery, and still have so much to learn. One of the things I did when I first joined was to take a few hours and go back on the forum several months and read a variety of posts. It helped so much! Each of us recovers at different rates, and to different levels. Some of us use crutches, others canes, and still others walk unassisted. The legs seem to be the last to recover, and the area where recovery is most often compromised. Please hang in there, and trust this forum to help.

Dear Hedley,

Everyones experience with GBS is different but most times the feet and lower legs are the last place to recover. I was left with weakness in my ankles and feet and occasional tingling. I was able to walk without assistance about 7 months after I first came down with GBS, however I was only 19 and that makes a difference. I know it is frustrating but try not to get discouraged.
You survived and have come a long way.

I have experienced the same pattern of recovery after about 2 years. My upper body is back to normal strength but the legs are not there yet. What I am noticing is that the leg muscles in the thighs (hamstrings, quads, adductors and abductors) take a long time to regrow once they have disappeared, most likely because they are just so big compared to muscles in the arms. I found that without enough leg strength it is hard to properly exercise the feet and the ankles and so those have also lagged behind. It is only in the past couple of months when am I able to do things like hiking up hills which really works the feet and ankle muscles.

My legs and feet are getting worse, although I am using them as much as before. I suggested PT to my doc, but got no answer. The cramps continue in my legs and feet, and my ligaments are shorter than before. Swelling is worse in my calves, and my knees are continually puffy and painful.
I want to know what kind of exercises to do to help myself regain some flexibility again. The pain is much worse than before, really hard to take.

I’ve been doing exercises on my back while lying down in bed, just trying to stretch out the legs and feet till the tension eases in the ligaments. The knees are the worst, so I grasp behind the knee and try to hold position until the ligaments stretch out. This exercising is easing the pain somewhat, but it is necessary to do this several times a day to keep the stiffness down. Right foot still drags when walking, worse after 10 minutes. I tried leg lifts and knee bends while lying down, but it made my lower back much worse.

What exercises are the rest of you doing? I know that the arthritis support groups have range-of-motion exercises which help them.
Also, how do I control the swelling in my knees and legs? Is there any kind of topical cream that would help? My knees are very hot to the touch, so I don’t think A535, or Tiger Balm would help.

Hi –

Didn’t have the foot drop and my case started 5 years ago. I have noticed improvement and better toleration in years 2 thru 5 so don’t give up, just keep on dealing with it. One of my issues is that I look normal (well not really) but it’s frustrating as others, no matter how much you tell them just don’t get it. Damage to the nerves affects so many things as we have all come to find out.

PS – extra viewing of Blazing Saddles may be in order, it can’t hurt !

I am just ending my 4th month of recovery since exiting the hospital on 1/11/10. I really improved during the month of January and have walked unassisted since leaving the hospital. During Febuary, March, and April, recovery seemed to be slowing to a snails pace for me. I have a stationary bike that I am riding for three to six miles a day as well as doing upper body exercises. Sometimes I feel like the exercise is hampering as I get really exhausted early in the day and so I take a break for a couple of days. I am still numb and tingly in the face, nose, and hands. My feet are my biggest concern. Very numb and I still have balance problems. I payed a visit to my Neuro last week. First visit since leaving the hospital. I was really happy to have my reflexes back in both arms and my left knee. I could feel the tuning fork vibration in my left big toe, but still no feeling in my right one. When you hear from those with experiance that healing takes time it is the absolute truth! I told my wife in January that it was my goal to be back 100% by the end of March. I have now changed that to “Let’s see where I’m at at the end of a year”. 😮
Hedley, I think we should all grab a plate of beans and head out to the campfire!

My biggest recovery has been between years 2 to 3. I don’t know if a doc would agree with that, but this is the year that I feel most like my “old self”, although I still have frequent pain on my left side.

Who cares if the doc would ‘agree’ with that? They have a lot to learn, in my experience, and if they put more effort into learning it from the patients instead of referring to their little GBS pamphlet with the few sentences of sketchy medical facts and statistics, they’d be more knowledgeable and helpful to their patients.

You’re the expert here, because you’re the one who is experiencing this, and you have shared the honest truth regarding your own case. This forum has been my biggest source of info about GBS-CIDP, because there are real people here (diagnosed and undiagnosed) with the facts of what happened and is still happening with them.

I’ve seem some improvement in my gait this week, due to my stretching exercises. GBS onset destroys myelin as well as causes tightening of the ligaments due to the severe, continuous muscular contractions. When the onset settles down, those ligaments are shorter and that affects the gait and range of motion. Shortened gait causes more swelling, then more pain, then even more shortened gait, then more swelling, more pain, more weight gain, and on and on with the cycle.

To break the cycle and jump-start the recovery, I’m finding that in my case I have to relearn how to balance, and I have to change my body’s ligament flexibility range through stretching exercises. No PT has been offered to me by the doctors in my case, even though I’ve walked in painful, awkward, shuffling, scraping baby steps for 2 1/2 years, so I’m desperate for answers and improvement now.

Years ago, I hurt my neck in a whiplash injury and was assigned some PT; the technician also sprayed my neck muscles with a muscle relaxant and instantly my neck dropped several inches as the tightened ligaments relaxed. The terrible pain left. Ever since then, I’ve used this procedure whenever I’ve had muscle or ligament pain. One thing though…the muscle or ligaments need to be well-warmed-up first. Then just stretch out the limb and hold it till it through the pain till it finally stretches out and the pain stops. After that, there is greater ease and range in movement and less or no pain. The exercises have to be repeated daily.