AnonymousFebruary 12, 2009 at 10:10 pm
Hi Fellow CIDPers,
Every time I overdue things, I have really uncomfortable electrical sensations over my body and also stiffness and cramps associated with it. I feel as if I am short-circuiting (like an android short-circuiting in a sci fi movie)! I even have bouts of shaking with it as well (as if I am freezing – but the outside temp’ is warm).
These pains/electrical sensations usually will last up to a day after doing too much – and ease off after resting.
My question is – does anyone have this type of pain with their CIDP and have you found anything to help it?
I have had this ‘stuff’ since coming down with CIDP (my type is predominently sensory now).
February 12, 2009 at 10:34 pm
Kazza, I don’t know if it’s quite the same or not, but I describe it as “my skin feels like it’s crawling”. I’m an electrical engineer and I’ve been shocked many times and this feeling doesn’t feel like a good stiff jolt of electon juice to me:D . My fingers and ankles in particular seem stiff though when I’m going through a flare up. I haven’t associated the sensations with over doing it, it just seems like a cyclical attack of antibodies to me. Exercise for me exercise seems to help diminish it. Sorry that doesn’t answer your question.
(I do like your android analogy, I’m a sci-fi buff).
I have visited Darwin and Perth before and must say that they were the warmest and friendlies people.
AnonymousFebruary 13, 2009 at 12:02 am
When I overdo it I have described the feelings in my legs as what it feels like when you hit your “crazy bone” in your elbow. I usually say my legs feel “wired” today. And like you, it usually last a couple of days. I can usually deal with it if that is all that is going on. But when I have the incredible fatigue along with that sensation, it really bothers me.
I am very fortunate in that I have very little pain. My pain is basically just my fingers tips feeling like frost bite. When I read what many are going through, I stop my whining.
AnonymousFebruary 14, 2009 at 10:33 pm
Sounds like we are close in some aspects. At night, my muscles and tendons in my legs, but mostly my feet draw up. As a result, the morning is so-o-o-o-o very painful. The electrical shocks at night are suprising, and during the day are a pain. To over-do is to spend time in bed.
How do I deal? I try to stretch my plantar fascia as much as I can, six or seven times a day. If I wake up at night to pee, I really try to stretch, because it isn’t as bad in the morning then. As for the cramps, a glass of milk, or chocolate milk seems to help. I also do a multi-vitamin when I remember.
Dealing with the pain is my most difficult challenge. If I take enough to make it go away, I am out of it. Otherwise it hurts and hurts. If I know I will be doing something, like grocery store, or walking more than I should, I try to get ahead of the pain with my meds, and keep on them for a couple of days. It seems to lessen the severity and duration of the pain cycle.
I wish I could help you more.
PM me if you want, and we can talk a little more specifically.
AnonymousFebruary 15, 2009 at 6:24 am
Thank you for your replies. Gary – I’m a sci-fi buff as well!
Donna – I know what you mean regarding fatigue – that overwhelming weakness is usually a good indicator that I have overdone things and to get home and lie down (if I’m out) otherwise my shaking, discomfort starts.
RmcGrath – The electrical sensations – started the same week as my first ‘biggee’ attack – and still hang around – years after.
Dick – That’s a great idea regarding getting on top of the pain before it gets too bad (do pain killers help the electrical sensations though?) – also, I should stretch my tendons – those cramps at night are horrible! I have found now, that even though I can handle a bit more physically these days since my last attack (walk a bit further, etc) it is now at the expense of more pain.
Thanks again everyone,
AnonymousFebruary 17, 2009 at 10:26 pm
In my experience pain killers do not change the pains associated with the neuropathy, the shooting pain, the burning, the bee stings, the tingling, etc. In my own experience, topomax did the best job on that pain, (for me ). Currently I am using neurontin to try. It does a so-so job for me. My neuro perscribed 2400 a day for me (600 x 4). When I take it that way, the electrical stuff is fairly well controlled, but I eat a lot, and feel so-o-o sluggish. When that is combined with the morphine for other pains, I am useless. So I take the neurontin on a “as needed”. I know that if I work too hard or too long, I will suffer, so If I know difficulties lie ahead, I will get the neurontin in me ahead of time. It seems to mitigate the situation.
Have a great day !!
AnonymousFebruary 18, 2009 at 12:13 am
I had GBS 26 years ago and over the last few years the residuals have kicked up a notch. When I am tired and over do it, I too have all the same symptoms as you and then some! I am like Dick and use neurontin on an “as needed” basis. If I balance things out and don’t over do it then I can go for months not needing to take any. Summers are the worst for me as that is our busy season on the farm. Right now, I am doing well and the shocks are few and far between. I try not to take the neurontin if I can help it as it makes me feel drunk and if I take a lot of it I gain a huge bunch of weight that I can not afford to! 🙁
I hope it helps to know there are others out there who have the same issues. Even though you have CIDP, we can surely empathize with others who suffer with similar issues.
AnonymousFebruary 18, 2009 at 8:25 pm
Gary O, I like your “crawling” description because my legs sometimes feel as though they have worms crawling around in them. I can actually see my calf muscles moving. Kazza, I also get the “electrical” buzzing when I am overtired. For me the worst symptoms (weakness, muscle twitching, etc) seem to be seasonal — start in August every year and start to subside in November/December. I spend the next few months trying to get my strength back a bit and then I start the whole thing over again. Maybe this year will be different (sigh)? So far, these are GBS residuals — however I had nerve conduction studies in October and am scheduled to repeat in September for a comparison to see what is going on.
AnonymousFebruary 20, 2009 at 1:44 pm
Does your pain get worse towards evening? Mine does, and I remember DocDavid saying his did. He suggested taking the drug not evenly throughout the day, but along a path similar to your pain course. For example, if you wake up with a tolerable pain level and don’t have an increase until say 3 pm, then take your first dose at about 1 pm and then evenly spaced until your normal bedtime. This idea works for me.
AnonymousFebruary 21, 2009 at 5:59 pm
Thanks everyone for your advice. I think the common “link” here with all of us is “over doing things.” Which is quite frustrating isn’t it? But I suppose we all know our limits now!
I shall ask my Doc about something for the nerve pain. Apparently, (my Neuro said) I have quite a few “residuals” from my CIDP.
Thanks again – much appreciated.
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