Electric Shocks anyone??
February 23, 2012 at 3:41 am
I was curious if anyone else had similar symptoms as me when it comes to electric shocks?? I noticed when my body first got “hit” .. I was standing up and got this crazy shock sensation down my back and leg (the most affected leg).. I have had sciatica on and off before, and it felt nothing like this.. this was totally different!
Anyhow, this last relapse.. I got the same shock, though then included my left leg (which was previously not as affected) .. and it was followed by numbness that ascended up to my face and tongue.. total face/all over numbness … anyhow since then I have been worsening and have been getting these shocks all over my spine, neck, back, and occasionally arms and legs too.. ugh.. it just makes me almost drop to the floor, thankfully they are fleeting.. i still have the creepy crawly sensations which are relieved by lyrica .. I only take lyrica at night and the shocks are worse during the daytime..
AnonymousFebruary 23, 2012 at 4:21 am
I get these electric shocks too several times during the day and night. In different parts of the body–feet, arms, scalp, sometimes I feel 2 shocks at the same time in different parts of the body (in my abdomen or my side and in my extremity). My doctor prescribed Cymbalta–but I haven’t filled my prescription yet. I try to tolerate these shocks. The drug is pretty expensive–almost one hundred dollars for 3 month supply. Bny 806, What do you mean by creepy crawly sensations? I have had CIDP for 2 years and 2 months now. I asked my doctor “why I am having these shocks; isn’t IVIG suppose to help regenerate the nerves?” He really couldn’t give me a straight answer; he probably didn’t know the answer. I don’t get numbness with the shocks. But I get occasional numbness in my right fingers; on the ball of my right foot, I feel there’s something underneath it–the doctor says that’s “numbness”. Sometimes my legs occasionally feel like “pins and needles”.
February 23, 2012 at 4:31 am
exosurf, thanks for your reply! Glad to hear i’m not alone, but I”m sorry that you feel these too!!! As far as the creepy crawly sensations.. that was one of my first symptoms.. I coudlnt’ sleep at night.. it felt as if my leg and arms were asleep/lack of awareness of where they were .. I could go to sleep no problem, but would constantly wake up trying to “shake” the sleepy limbs back awake… it was initially just stocking glove (short ones) distribution, but then crept up all the way to my lower face.. I went about 3 months not sleeping .. and I had a baby too, so I hadn’t gotten sleep in a while! I finally had to take lyrica and it saved me!!!! I feel it the second it wears off.. It’s just a sensation of wanting to crawl out of my skin! I also can’t stand the feeling of socks, shirts etc on my arms and legs.. I used to wear tall socks, and sleeves that were tight on my arms.. but i just can’t do it anymore.. Yea, it is amazing how poorly nerves/muscle issues are understood!
AnonymousFebruary 23, 2012 at 11:26 pm
I know where you both are at. CIDP for me started out very much sensory, but as I got progressively worse, my muscles became more affected. I know where you are and how it hurts.
I have several different kinds of nerve responses. One is the VERY SHARP INTENSE pain. It usually doesn’t last long, usually 3 to 5 seconds, but it is so intense it will drive me to the floor with a loud vocal exclamation. For me they can go anywhere now, but they started in my feet, and then calf to feet, then thigh to feet, or anywhere in between. Now they can happen in my face, hands, legs, arms etc. People look at me like i am freaky, but when the pain is that intense and sharp, it dominates your life.
The next pan is the NERVE BUZZING. For me it is like how your hands feel after running a chainsaw for an hour. Or a gas weedeater that has one string too long. It is just Buz-z-z-z-z-z-z-z-z-z-z-z-z-z, no relief, just on and on. This pain may last for hours at a time.
Then the pins and needles. Familiar with a leg “going to sleep”. I get that one too quickly, but it is easy to deal with… wait it out.
Sometimes an extremity will just get “hot on fire” This one is just under the BIG SHOOTING PAIN, but it comes and goes.
Numbness for me is now constant. It is frustrating to not feel, and I have found that the higher my stress is, the more the numbness proliferates..
So… How to deal with it? The first drug I had limited success with was Neurontin (generic gabapentin). After a while I gave up on it. I just got too groggy and gained too much weight. We tried a couple of others (Cymbalta was one) with little result. Topomax seemed to work, and I took that for a couple of years. Then I tried nothing for a while, but a part-time job ended that. the extra work stress made my cheeks numb and I needed something. Right now I am using Keppra. It seems to be making a difference, but the biggest thing I can do for myself is to keep the external stresses down. If I get good rest, take the multi-vitamin (nothing fancy, just Centrum), and try to NOT over exert myself. When the nerve pains start acting up, I need to slow down and get things back on square 1, or I will be heading to bedrest.
Why are the pains there? As demyelination continues and the nerves suffer damage, they “speak up” and want to be heard. If the brain hasn’e heard from a particular area in some time, maybe it sends an “URGENT” massage and it knocks us back. The solution? find one of the pain medications that help YOU (they all don’t work for everyone) and take it. Reduce external stresses and relax. Try to shed some responsibility and let someone else pick up the slack. You will be better in the long run.
My neuro told me that when axonal damage is very severe, you will not get it back. Heed the warning signs and allow yourself to heal before you push onward. We each have a level of functionality that we should not cross. Respect the line. Live to the fullest, but re3spect what your body is telling you, and frequently this nerve pain is telling you to “cool it” just a little bit.
AnonymousFebruary 23, 2012 at 11:54 pm
One of the first real signs that something was wrong was when I woke up one night with electric shocks coursing down my legs and arms. It was as if my extremities were electrified. Two years later, I still get the shocks, though they are now limited mainly to my lower legs and feet, I will still get them in other places — including my face.
February 24, 2012 at 1:57 am
i get a buzzing/vibrating feeling in my feet and lower legs (my cidp afftected areas) they are not painful. I actually prefer the buzzing to the numbness. the buzzing comes and goes. I havent figured out and pattern to it, I used to think it was when i exercised or overdid things. But it happens on my lazy days too???
I agree –symptoms get worse for me with stress too, more numbness, harder to walk when stressed.
February 24, 2012 at 9:12 pm
Wow.. well i’m sorry yall feel these too, but I guess i’m glad i’m not a freak of nature when it comes to that symptom!! 🙂 Dick S/lori- Coudln’t explain it better, though I can’t say i’ve ever held a chainsaw while on.. that vibrating/buzzing feeling that Lori talks about was one of my first symptoms and most annoying! I always refer to it as the “crawl out of my skin” sensation.. but have also said vibrating..my shoulders do this a lot.. and face sometimes too!
Goodney.. I remember having the shocks down my back and thought it was strange.. it wasn’t until I got them again before this next relapse that I realized they preceeded the big storm that happened.. it’s so strange!!!!
I am trying to decrease stress.. but gosh with full time work, kids and most of all THIS it’s really hard to.. this is really the only thing that stresses me out.. and this while trying to resume a semi functional life with this whole thing.. and for me (and all of us on here), not knowing where this will lead is especially stressful for me.. It’s hard to plan .. though I know no one knows what tomorrow will bring.. with a chronic illness it is a little, well a lot more worrisome of what the coming months will bring.. especially with everything happnening so fast in the past few months, it’s a lot!
AnonymousFebruary 25, 2012 at 2:35 am
I don’t think anyone knows how hard — mentally — it is to deal with a chronic illness like CIDP. I think this is especially so because we don’t look sick. But we’re in pain. We’re scared. We’re worried that we may not be able to continue to work and support out families. We’re worried that someday we may not be able to walk. Or stand the pain. And the worst part — for me at least — is the suffering those who love us go through just watching what we have to go through. And the doctor tells us to avoid stress!
February 26, 2012 at 12:25 am
I definitely agree with you Goodney and Bny– the stress from the cidp is VERY stressful—and how can we not think about it when it is there 24-7 and affects every single thing we do? It is really the only thing in my life that really stresses me. Work. kids. life in general is not stressful to me—its the trying to live this life with the weakness, fatigue of cidp that is.
February 26, 2012 at 2:41 am
Agree!!! I was just telling my husband, how easy JUST working full time in a stressful job and having 2 kids under 2 would be…. without this whole health issue.. it would be SOOOO easy!!! Puts things in perspective.. Goodney.. I defiintely fear not being able to provide and someday loosing my ability to walk as well.. I’ve been so active all my life, it’s hard to think about not showing my kids how to do all the things that I love to do in my life (hiking, surfing, tennis etc etc)… Most of all I just want to be around to help raise them, if I can’t do everything I can deal with that… after the ALS scare, I’m just will be thankful to be around in semi decent health…and hopefully always have my speech especially! so yea… no stress 🙂
February 27, 2012 at 9:22 pm
Do any of yall have joint pains?? When it first hit my leg, my knee hurt, so i thought i must have just torn my knee or something when I was pregnant or playing with wthe kiddos.. then when it hit my hands i had pretty good wrist pain. some shoulder pain after that… The last 24 hours or so my elbows have been hurting, mostly when I bend them.. which is apparently more than I ever realized before.. nothing horrible.. just uncomfortable.
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