AnonymousOctober 27, 2012 at 6:28 pm
I have been symptomatic with CIDP for almost 2 years now and getting treated for a year with 60g every 2 weeks of IG. My neuropathy has gotten worse even though the strength has come to near normal ranges. I have had a little setback in that regard recently but hopefully that will improve again. Even though some signs are better , some numbness has receded, I am seeing no improvement in the pain dept.. I cannot sit or stand for extended periods of time due to an intense burning pain along with a host of other sensations,that grows depending on what I am sitting/standing on and for how long. Usually within 10-30 minutes. I usually get relief by getting to a soft cushioned seat and getting my legs up for 20 min. or so until it subsides. It also seems to be cumulative over the day so by the end of the day it can develop sooner. Moving on my feet seems to be better than standing still. I also have fatigue and a weird chest sensation that feels kind of tight and ‘numb’ for lack of a better word. It’s hard to describe. But feels worse when I’m tired out. There doesn’t seem to be other underlying issues like heart trouble or breathing issues. I guess they are referring to the rest of the symptoms as a general malaise from CIDP. I am going to a pain management doctor who is giving me an antidepressant drug used for pain (nortriptyline) to start. I guess they are starting light. Makes sense.
Socks and shoes are a nightmare. I’ve had sandals on since april, and I’m trying to figure out what to do for the winter.
My neuro has told me that there are no set paths to recovery and that they only treat strength not sensory symptoms. I understand why, although it’s not very comforting
I guess one can get better and the other not, but one usually follows the other? or NOT? There are a whole lot of maybes in the conversation.
I’m pretty worn out on all sides of the equation. I never feel better than 90% well. Each day is up for grabs with regards to how much less than 90% it’s going to be. At least I get better relief when I’m horizontal at night.
It has made me pretty frustrated and pissed off a lot.
It’s hard to understand unless you go through it personally. I have not shared my condition with too many people because no matter what anyone tells you , people treat you differently when you have disease then when you’re ‘normal’. Been there, done that, got the T-shirt.
What I am hoping for here is to get some feed back about neuropathy pain issues and how that has been through the course of your illness. Has your neuropathy stayed with you too?
Experiences with pain meds. I don’t want to become an oxycontin addict.
Sock/shoe ideas for the winter. Crocs are deadly on smooth wet surfaces.
I realize a lot of this has probably been covered here but there doesn’t seem to be a way to search post topics.
I’m really not a complainer but needed to get this out. One of the perks of belonging to an exclusive club.
Thanks for listening.
October 27, 2012 at 8:27 pm
Some pain went away with recovery of strength, some did not. My feet hurt all the time. I just live with it and try to get off my feet when I can. I got off Oxycontin as soon as I realized I could get along without it (still in the hospital). I’ve taken no pain meds since.
October 27, 2012 at 9:34 pm
I am sorry to hear you are suffering- Are you able to try acupuncture? It has helped me and is proven to be beneficial in neuropathic pain and no side effects! Also I find Uggs a great solution for winter as you don’t need to wear socks with them and they are very soft and warm- they make them for men and women- expensive but worth it – Hope you get some relief soon.
AnonymousOctober 28, 2012 at 1:53 am
Thanks for the reply shelbones.
I did try acupuncture with no relief at all. I’ve tried all the obvious over the counter things like the various types of pain relievers, capsacin, lost 25 lbs. hoping it would reduce some pressure somewhere (nope), lyrica (bad reaction), gabapentin (fell asleep on a minimal dose).
Uggs are an interesting suggestion. I’ve never tried them on. The issue for me is compression which is why the really open sandals were ok. I did try on a pair of fur lined crocs at the store but they didn’t have a size roomy enough for me. I seem to need acres of room which is why the crocs were the second option without having to wear socks. I’ll have to figure something out. I need to see if there are other sock options out there.
What point are you at in this trip?
October 28, 2012 at 3:56 am
WTF, no, I don’t mind. I’ve related it before. Onset of my disease was early August, 2010. By early September I was in the hospital, diagnosed with GBS and with near total loss of leg strength. By some time in October I was completely paralyzed below the neck, and receiving painkillers for leg pain. I was given plasma exchange treatments, and started recovery somtime in November. I stopped taking pain meds early in the recovery process when I realized the pain had subsided to tolerable levels.
After my plasma exchange treatments ended, I had about nine weeks of therapy in the hospital (one week) and two rehab hospitals. I was discharged home in early January, 2011. At that time, I still had a lot of numbness combined with hypersensitivity in my feet, ankles, and lower legs, and I had moderate foot drop. Over time, sensation has improved and the hypersensitivity moderated, and the dorsiflexion has improved so that I know walk nearly normally without a cane. Ironically, as my feet have come back, the neuropathic pain associated with damaged nerves has increased. I have a tingling and burning sensation all the time. It is worst when I walk or stand for an extended period, and the remedy is simply to get off my feet when I can. At home, I sit with my feet up much of the time, but sitting normally is not a problem. It is mainly putting weight on my feet that hurts. The constant background pain is something I have just become used to. I prefer not to take pain meds of any kind unless necessary.
October 28, 2012 at 9:33 pm
In answer to your question- I was dx 5 years ago at age 41. Originally dx with GBS , hospitalized , paralyzed from trunk down- good response to IVIG 5 day loading dose – relapsed about 8 weeks later and back on loading dose ivig- after another relapse, re- classified to CIDP and have been on maintenance ivig currently every 10 days and also in Imuran ( azothioprine) for CIDP- my strength is improved but not normal – I am able to walk without a cane but not long distances I have a wheelchair if I have to walk long distances. I have some tingling , numbness and some nerve pain but take no meds for it as it is not the most prominent symptom for me- uggs are pretty wide and you can size up if you need they usually tell you to get a size smaller as it is natural shearling lining and compresses with time- I have a lot of issues with Raynauds so for me they are a lifesaver – I hope this helps and hang in there !
October 29, 2012 at 3:14 am
WTF, sorry I didn’t make that clear. My original diagnosis was GBS but it was changed to CIDP. This is not unusual when a CIDP case progresses relatively rapidly. I am considered atypical.
October 29, 2012 at 3:28 am
WTF, as for nerve healing rate, who knows? Demyelination heals relatively quickly. Axonal damage takes much longer, and may never heal completely. Parry and Steinberg report that about 75% of GBS patients recover strength fully, but that some of these will have “persisting but mild abnormalities” including “abnormal sensations.”
Since the rate of improvement slows over time, it eventually reaches a point where it is difficult to notice any improvement, so one must just do the best with what one has. I had thought my hands were as good as they were going to get some time ago, but then someone whom I see only every few months noticed that they had improved in that length of time.
October 29, 2012 at 1:52 pm
WTF, it is not surprising that acupuncture was unhelpful. Acupuncture is placebo. You would get as much benefit from a foot massage. If my feet hurt more than usual in the evening, I soak them in warm water. That seems to help a little.
AnonymousNovember 4, 2012 at 9:05 pm
dr. schols socks are the only socks i can wear….get them at walmark….it has been 7 months and i can,t figure out any shoes except echo sandles ….i walk right out or sideways with crocs…maybe try licria again, i seem to get some relief..thank god for friends and family …if you don,t get better this disease is impossible to figure out …we understand it better than drs. keep sending helpful hints.
November 4, 2012 at 10:05 pm
WTF, Parry and Steinberg is a useful overview which I read shortly after I was first diagnosed. I still consult it from time to time, but it is not my only source of information.
Most of my information comes from my own experience with CIDP.
AnonymousNovember 4, 2012 at 11:53 pm
I wear Merrill sandals that have multiple adjustable straps. I can’t wear any type shoe that can’t be adjusted and all my shoes must have a level bottom (no heels or slanted shoes). I wear the less thick soled sneakers in winter. It’s hard to find a shoe that is comfortable and I feel are secure on my feet.
I may buy a pair of the compression socks at the medical supply store as my calves ache worst in cold weather and I find this does help.
AnonymousNovember 8, 2012 at 2:13 pm
I wear socks, sandals, shoes and / or soft slippers. Putting them on is a challenge, but it doesn’t hurt a lot.
I take a lot of gabapentin / neurotin, 3600 mg a day, sometimes more. It has serious side effects, but I have no choice.
Receiving 37,5 mg IVIG every four weeks, this helps for about three weeks.
Coming meeting with the neuro we will decide whether or not increasing the frequence or dosage.
My foot has improved a little in the last six months, my hands have gone a bit worse.
This would have been better the other way around, but as we say in Dutch: ‘the bakery doesn’t make prefercookies’
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