I have yet to actually be diagnosed with CIDP by a neurologist; but do any of you experience intense muscle cramps or charley horses; especially when standing or walking? I however have them some times with sitting. I have trouble bending over, getting up stairs and sometimes sitting. I have tried Powerade/Gatorade, Banana's for the potassium, I take calcium on a nightly basis, not sure what else I can do. Am up to 600 mg Gabapentin three times a day, but without relief.
I would get cramps and muscle twitching that seemed to precede a slight relapse. I say slight, because I am very mildly afflicted and don't have near the problems that others with CIDP have. It's weird because the cramping would be in unusual places--not the calf or big toe, but the side of the ankle, etc. I've started taking NAC and R-Lipoic Acid. I'll see how that works out.
I get them too. For me there is no pattern they just happen and its usually my arm or foot. I haven't found anything that reduces them.
BIG TIME, ALL the time! Hands, feet, arms, legs. Sometimes 2 - 3 times in the middle of the night until my Dr. put me on Lyrica and Magnesium Citrate 400mg daily. Much better now.
I had intense cramping and leg shocks when the brand of IG was switched. It mostly went away when I was put back on my regular. For the most part if I drink tons of water each day I'm not having that many intense painful leg, ankle and foot cramps in the night. I take no meds but do take Lipoic Acid.
I use a fantastic product to stop my most painful and severe cramps immediately. It comes in a small roll-on applicator that will fit into a pocket or purse easily. It's called CRAMP 911 and available over the counter.
Yeah, I get cramps occasionally. They usually occur at night, but sometimes during the day, and occasionally at an inconvenient time. I have had to stand up to stretch out a cramp a few times in events like meetings and concerts.
My neurologist tells me this is not uncommon with CIDP. He prescribed Ropinorole, which does help with the cramps, but really upset my stomach. Eventually, I stopped taking it. Now I just deal with the cramps. I have learned not to put myself in certain physical positions which lead to cramps. It's hard to describe, but if I stretch too much, or pull my legs back under a chair, it tends to lead to cramps, so I try to avoid positions like that. This has helped a lot, but I still forget and get one occasionally.
By the way, my family doctor says that low magnesium can cause cramps. Turned out not to be the cause in my case, but you might ask about that if nothing else helps.
still getting cramps and not drinking anything for it. figures its normal to live with the pain all day. go figure.
thanks for the info will talk to my dr about this
i thought that i had CIDP for several years, that was diagnosis. just recently had a muscle and nerve biospsy.
i have really bad cramps and intense pain in my calfs and hamstring muscles.
interestingly enought, now based on the muscle biopsy, i have now been diagnosed with Polymyocystis.
look at web MD and see if it matches your symptoms. just my thought. good luck
My Dr has me taking 400mg of vitamin e and about 4oz of tonic water with quinine a day for the Charley horses and it seems to help. I found the diet tonic water doesn't taste as bad as the reg.
I have had success drinking Zero profusely. I also avoid tiring the muscles or stretching them particularly at night;however, stretching the muscles does stop the cramps immediately. I got no relief from Gabapentin regarding the cramps.
There are two broad categories of pain. One kind of pain is actually due to some sort of physical issue, muscle strain, tissue damage, etc, sometimes called nociceptive pain. The other kind is due to improper nerve function, with no underlying physical issue, and is called neuropathic pain. Pinched nerves cause neuropathic pain, and I suspect much of the pain associated with CIDP is neuropathic pain.
"Normal" pain relievers, like asprin, ibuprofin, etc, work on nociceptive pain, but are not effective on neuropathic pain. That is one reason people with pinched nerves find it so hard to get any relief. Neurontin (gabapentin) is more effective on neuropathic pain, but not nociceptive pain. So, I would expect Neurontin to work on the seemingly endless deep-seated aches that seem to come from CIDP, but not to work on cramps.
OMG! I get them so bad, I used to end up in the ER. The only thing that took them away was IV fluid. It has to be from dehydration. Then I was told by my Neuro to drink Tonic Water. It seems to be working quite well. It has quinine in it, and that must be what helps it. I get most of the severe twisting painful spasms in my stomach. I think mine are more like severe painful spasms.
I am concerned about the possibility that some people who are desperate for relief will begin to take some of the medication others have taken with some relief without following through on the CAVEAT that so many of you include with your own experiences. Talk to your Dr. (Call and leave a messagei with his nurse), before you add anything to your regime. Some of these quasi-amino acids (taurine), minerals( magnesium), chemicals(quinine), and sugars (d-Ribose), can have have disasterous effects when taken with certain other medications, diets, and diseases. Others, just have no EVIDENCE-BASED proof that they work at all other than occassional personal testimony. Be careful out there. Do the research for evidenced-based studies even those in alternative medicine.
Please be very careful. You should absolutely consult a doctor. It's super dangerous to take other's medical recommendations. Please be careful of what you recommend too. We all have to look out for each other! :)
That is the same feeling I got from the tone of recent posts. Your advice is well taken.
I must say, there are times when a post suggests that simple measures might overcome the problem they present. It becomes irresistable to offer that measure of advice, e.g. Simple recommendations of hydration pre-IVIg, during, and after with tylenol to minimize the headaches that plaque so many recipients of IVIg. My own experience has taught me, and others have expressed similar experiences, that many doctors and infusion personal are so busy that they often overlook the extremely important “detail” of hydration. In that case, I think telling someone WHAT WORKED FOR US is not a bad thing and does NOT recommend that they do it but rather that they take it up with their health care provider. Thanks for your post to stay on track. That’s always excellent advice and something I need to be reminded of.
I may be a rare bird, here, but, if it weren't for other's recommending some otc things to me, as well as treatments that worked for them, my life would not have turned out so positively. I know the Neuros know a lot... but I don't always think they know what to do for all of us. A lot of me relief came from trying things that other patients on these sites recommended to me. However, I did take the advice to my own docs who then agreed to implement them. The ALA took a couple of months before showing any signs of improvement. I am very glad I was persistent and I kept taking it as I was told to. Even though that was otc, I also cleared that by my neuro. The Tonic water for my severe stomach spasms, has kept me out of the ER, and it was recommended by my Neuro. But he never did give me a limit. I was glad to read all the comments on it. I will now be asking how much he recommends. The juicing was all fruits and veggies, with some protein powder, and I again, cleared that, too. I totally agree that people need to check with your neuros. Sometimes the simplest things can cause havoc if given with something that it counteracts with... I should also mention that their have been times when my docs used my info to help other patients. It is my understanding that the term "CIDP" was just coined in the 1970's by Dr. Peter Dyck at the Mayo Clinic in MN. Though this disease goes back a long way, it was just named not so long ago. So there is SO much our own doctors don't know. I have been to countless hospitals earlier in my disease process, and not ONE had ever heard of it. AMAZING! JUST AMAZING that we can't seem to get the word out to them.
Jeanbell, we will all continue to give our experiences including our treatment successes. The caveat here is that aome will shortcut the consultation with the Dr. And go straight to the health food store etc. And start on the regime that we were on without personalizing it the their personal disease profile, weight, immune status, and concomitant disease process.
We will all continue to share our experiences, good, bad, and disasterous. These will include standard treatments, alternative treatments, and experimental ones, BUT they are OUR EXPERIENCES AND DON’t AUTOMATICALLY TRANSLATE TO ANOTHER’S TREATMENT PLAN WITHOUT CONSULTATION WITH THEIR HEALTH CARE PROVIDERS.
I apologize for not saying to check with your doctor first. I check with my doctor before taking anything, OTC, vitamins, etc so just assumed my input would be taken as something to ask their doctor about. Please accept my apologies and I'll be more careful from here on out.