Anyone with CIDP have bouts of extremely slowed movement?
AnonymousNovember 16, 2007 at 10:14 pm
Does anyone else with CIDP have bouts of slowed movement. It’s hard to explain, but sometimes I just slow right down to a stop. For example sometimes when I am walking – My legs will just stop walking and I need a push to get going again – Then I can continue walking. As if my batteries are running down and need recharging.
Anyone else suffer from this? I am usually slow anyway, since coming down with CIDP and am lucky to be still walking – it just feels strange for my legs to just stop walking and all I need is a push to get going again!
AnonymousNovember 17, 2007 at 4:47 am
Yep, been there, done that, and it’s exactly as you describe. I’ll be walking and all of a sudden my legs just refuse to go any further. After a few seconds coaxing I can get them moving again, but it can be extremely frustrating, particularly to the people in front of whom I stop!
AnonymousNovember 18, 2007 at 9:04 am
I’ve had to describe this to friends as a ‘pushability’ problem. It is very difficult to explain anything like this to family and friends or even other non-neurological medical doctors or staff. Many disorders are outwardly evident and can be seen to be repairable.
I tell them that there is a sort of momentary resignation by the motor nerves in sending the message. Over the 14+ years of my CIDP related PDN there has been relatively little in the way of motor nerve damage. Much more sensory nerve damage.
Yesterday, a Saturday visit to the local hospital for an MRI head/brain scan requested by an ENT consultant. A longer route to the MRI area than usual as the main departmental doors were locked. By the time I arrived back at the hospital exit doors I really was into pushability problems.
AnonymousNovember 18, 2007 at 5:14 pm
others have put to you are quire right!
In my case, it’ll start out as [I]if[I][/I][/I] my legs have wet concrete casts on them…then it starts to set and they will not move at all. It always comes on with little warning and the total ‘stopping, not working’ happens.
I pause, reorganize my mind…thinking I can, CAN do this! Then I do it. I usually try to get home as soon as possible after that and nap to recharge what-ever has been over-taxed. Then try again the next day, usually with out any event.
It is frustrating in that anywhere I go, I sort of have to ‘plan’ my route shopping or just walking anywhere. There have to be places to sit, and a way for a quick exit.
On the good side? I’ve not fallen during these episodes, nor have I become unable to get back home. Both scary prospects to all I am sure.
Ken, I really like the [B]’pushability'[B][/B][/B] term, as one really does have to PUSH past or thru it all.
AnonymousNovember 19, 2007 at 4:46 am
Thanks for your replies everyone. Homeagain, I also like Ken’s term “pushability problem” – As sometimes I just need a push on the back to get going again or like you, just time to get my legs going again. Yes, Danlwil, fatigue always has something to do with my legs having a mind of their own! Ken, I know exactly how you felt when you had to go the long way around on Saturday. Since having CIDP I always choose the shortest routes possible! I even avoid a lot of things I used to find fun like walking around the flea markets on a Sunday morning for example.
AnonymousNovember 20, 2007 at 3:10 am
Hello, as like others i have been down that road also. I have been walking a just froze and couldn’t take another step. I noticed when I did this my legs were shaking really bad because of fatigue. Then I froze and it seems to me I didn’t trust my legs to take another step because of the falling factor. My strength was really bad and I knew if I fell over my arms couldn’t support the fall and would be really bad news. So I just stood there until someone came and helped which could have been seconds to almost a 1/2 at times where I was. Support like a walker is a great thing and even then I had problems at time. It is like your mind is telliing you but you dont listen to it too take it easy. I am no medical doctor but this is just IMO. Take care and becareful.
AnonymousNovember 21, 2007 at 4:38 am
Thanks Gemcutter for your experiences. Actually, when I use my walking-stick when walking, my legs don’t tend to “short circuit” as much – so it’s like you and the others have noticed yourselves- fatigue plays a big part and not to overdo things!
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