Leg Muscle Questions

I had “mild” GBS, but I still have pain in my calves and biceps, where I had the most problems. If I sit with my legs under me, and I get up, I have throbbing pain for a while. Pain is a common residual from what I understand, so I suspect your issues are “normal,” whatever that is! Didn’t you say you ran a 5K? Maybe your legs hurt from all that running…. 🙂

I got GBS Oct. 2007. I can stumble around the house but mostly still in the wheel chair. When I get up after sitting or laying down I have to think about my movements also. The only way I get on the floor is if I fall on it and that has happened, I move very slow and careful to prevent those falls now.
From reading your post it sounds like you have made pretty good recovery.
Nice that you can help others. Mabe they would like to join our forums.
Good luck to you.
Shirley

I too had to learn to walk all over again & crawl .I had severe case 2006. I have been walking with arm cuff crutches for nearly 2 years now. When I get up or even sitting for awhile I have to check & see where my feet and legs are. Ithink that part is somewhat normal. I have sensory problems unable to walk without assistance,except for now in wheelchair due to broken foot due to my sensory problems, drop foot, & keep my left fist in a loose fist. Do you know if you have any sensory problems? you said you had to make sure where things are and your wobbly just be careful! II also get pain in my calves, its just one of our residuals.Lovely hugh?lol. Its great your able to do so much. Keep up good work.
Istaroaz

Same thing here regarding the leg muscles. Not too dependable nowadays.
Whenever I try to stand up, I have to stretch out and rotate my feet first, then bend my knees, and then with the aid of my cane, I try to stand. Sometimes, I just fall back onto the chair or bed, repeat till I succeed in standing up.
Then comes the first step, just a nudge of the foot forward, or into postion to balance with the other foot, then a few sliding baby steps forward, then stop for a rest, then a few more longer, sliding steps, then the knees start working and I can pull my feet up at the ankles an inch or so for more steps, then larger steps and by this time the pain and stiffness is diminishing, and I can make it around with my cane.

The times when I’ve ended up on the floor, I’ve had a heckova time getting back up again. Can’t get my legs under me, haven’t got enough strength in my leg muscles to push myself up, even with my cane. Have to reach up and grab onto a chair, or table or counter-top and with arm & leg muscles & cane in place, I can then rise to a standing position. Wish there was some improvement. Find that I use a lot of footstools to do things, can’t kneel anymore because my legs have retained fluid and my knees are so swollen that I can’t stand the pain when I kneel on them. Still grateful to be alive, but having more and more problems figuring out how to cope with daily living.
But still figuring it out one thing at a time; sometimes it’s just so frustrating, I rest and give myself a break from the struggle. It’s best to look on the bright side, and count the blessings, even though everything has changed.

I haven’t posted or read this forum for a long time. Mostly I don’t think about my GBS. It has been 4 years since I came down with GBS. I was in the hospital on a respirator for two months and in the hospital for a little over three months. Mostly every night I get cramps in my calves and have to get out of bed and put weight on my feet to get relief. My thighs are not affected. My feet are still numb and have a tight feeling. Nevertheless I can walk okay and drive. I still have numbness in my fingers but much less than in my feet. From what I understand this is because of nerve damage. Apparently the muscles are affected because they are not receiving the proper signals from your nerves. In my own case I think the nerves have recovered quite a bit but not completely especially in my feet. I am now 69 so maybe I won’t ever recover as much as a younger person might. Still GBS doesn’t prevent me from having a normal life. It certainly was a bad experience. The other thing is that as time goes by it is harder to notice any improvement. For instance I seem to be about the same as I was a year ago. It is possible that I have improved slightly but it is hard to notice.

Lgooseman and all,

It has been over 13 years for me. I had what everyone called “charliehorses” in my calve muscles nearly every night, and at first all I could do was roll up and take the pain. Then I learned to roll to the edge of the bed and force my legs and feet to the floor and with my hands push myself up in a standing position – that stopped the cramps, then I would get my cane and walk around. I got a perscription that helped but I can not remember what the drug was. If I remember it I will post it later.

It seems that nearly everyone has some type dysfunction with their feet, or there are many post about feet problems. Like all the rest of you when I get up I first just stand and stretch…then small baby steps (about the first 6-8), then I feel a litttle better walking with my cane.

We have many pressure points, or receptors in the bottom of our feet and these receptor neurons, or nerve cells stretch out but never actually touch other nerve cells. These cells talk to each other by neurotransmitters, small messenger chemicals that are stored in the nerve cell endings.

When a neuron is activated, an electrical current passes through the cell out to its branching nerve endings causing the release of its neurotransmitters. Neurotransmitters drift out into the synaptic space. The neurotransmitters attach onto surfaces of neighboring neurons at docking sites called receptors. When enough receptors are occupied, the cell is activated and an electrical current rapidly pulsates down the cell causing release of its neurotransmitters. This electro-chemical process passes on affecting millions of neurons in an instant.

We have billions of neurons in our brain. However, as we grow older many of these nerve cells die and ARE NOT replaced. So the natural aging process leaves some of us with nerve cells that are not communicating with other nerve cells – which means our muscles are not receiving the electro-chemical process from the neurotransmitters. This IN ADDITION with axonal damage which also leaves us without full function of nerve cells takes a toll on our body control and management.

I got GBS in Dec 1996, was misdiagnosed, and did not get either IVIg or plasmapheresis treatments. I was totally paralyzed – the only thing that worked on my body was my eyelids…thats all that would move. Then I got Transverse Myelitis, a blood staph infection (Staphylococcuss Aureus), pneumonia, internal bleeding, a tracheotomy and on a respirator, in a coma, and an EEG that showed no activity, a temperature of 107.9, BP 44/0 by Doppler (would not register by cuff), and the doctors told my wife to make arrangements for a post-mortem. They also told her, “had I lived, I would have been severly brain damaged from the high temperature and low BP for such a long time.” But my wife did not make those arrangements. She called our pastor instead – and when he arrived my family and friends circled my bed and prayed for a miracle. I was spared by the Grace of God!

While in the hospital ICU I did not receive any PT. My wife questioned about PT, but was told the special AiroDyne bed would give my body enough movement that I would not need PT. As a result I got another disease called Heterotopic Ossification – bone growth in and around the hip joints from lack of movement while paralyzed. I haven’t done anything about this for 13 years because looking back, I felt so badly I didn’t think I would live to see 2010. But now that I have, and feel much better than I did then, I told my wife, Rosemary, if I live another 13 years it’s not going to be with the hip and knee pain. I already have a chronic back condition that surgery can not help, chronic adhesive arachnoiditis, CIDP, and I get my first hip replacement April 20th!

I hope everyone has a Great Easter Sunday!!

Warmest regards.

Jethro

Oh Jethro, the things we go through from the medical professionals. 😮
It makes me cry that they can make such mistakes when we are so helpless and vulnerable.
Thank God for sustaining your life and helping you to make it through!
All the best with your hip replacement. 🙂
–Donna

Are you still with that same neuro? Also do you have, or can you get COPIES of your tests under first neuro and then subsequent neuro docs?
What meds are you on now? And, are they working or how aren’t they?
Lastly, what PT have you had since then?
Sounds to me? Like there were either ‘biases’ or sheer ignorance in the initial diagnoses and then severe lapses in diagnostic and therapeutic follow ups.
They dismissed you without additional therapy? Most dismiss this as ‘the insurance doesn’t allow it’? But go and call the ins. co. to see HOW it was put to them? I have gotten that administrative run-around at least five times in the 7 years I’ve had my CIDP issue [and others?], do be assertive! That is the only way you are gonna get anywhere!
Boy this whole thing well, ‘STEAMS’ me! Because WE suffer in the long term. As for the muscle cramps? Calcium Carbonate vs. citrate, plus some magnesium and some Vite D will help you asorb the calcium into the muscles and ease the cramps. Some suggest soaking feet in epsom salts? I got ‘buggy’ with this aspect, so it didn’t work for me. Doesn’t mean that it won’t work for you in terms of asorbing magnesium salts… Taking the calcium etc doesn’t cure over nite. It does take about 2-3 months for it to really kick in. Do keep that in mind. There are NO hard and fast cures for our nerve damages… Just getting ourselves into a right place to cure.
Keep faith and hope. Always.

Lagooseman,

I remembered the drug that helped with the leg cramps. It was [COLOR=”Red”][B]BACLOFEN.[/B][/COLOR] This drug helps by increasing spasticity in the tendon reflexes.

homeagain,

No, I do not have the same neurologist…in fact, you could say I had no neurologist.:rolleyes: And yes, I have all my medical records and ridiculous beliefs of the first neuro. There’s a long story here, but when I had the staphylococcuss Aureus, an infection specialist was tracking down exactly what type infection it was. It came back to be endocarditis, an infection that attacks the valves of the heart. When they called my cardiologist he looked at me and said, “he has Guillain-Barre.” He is from India and as a child his cousin had GBS. He went into one of the tubes (probably the lungs) and actually looked at my heart and the valves were fine. I might add I did have over 4 months of in patient therapy followed by another 4 months of out patient therapy 3xweek. And from the time I had the dexterity to use my fingers, I stared reading about GBS, flu shots (how I got GBS), etc., etc. I actually diagnosed my own CIDP, but could not convince my pcp or neurologist. I live 13 miles from Louisville, KY so made my own appt with UofL Neurology and was dx’ed CIDP and have been getting IVIg treatments since.

Best regards.

Jethro

I, too, use Baclofin to keep the muscle spasms at bay. It helps, a lot! If I miss I cramp up. I still get cramping and unsteady legs – but I am less than 4 months out, and still working on recovery. But Baclofin is amazing!

Dear Cathie,

It sounds like you may have RLS (restless leg syndrome). Eventhough you are trying to relax, your legs seem to have a mind of their own at times, and move where they want to go. I also had that too. Both should heal with a little time and Baclofen definately helps.

Take care and keep the progress going foreard!!

Jethro