AnonymousFebruary 2, 2013 at 6:49 pm
Here’s my story…
About 4 years ago, I noticed my right toes were numb. My PCP referred me to a neurologist and he found my peroneal nerve to be irritated. We waited to see if the numbness would resolve by itself and tried B12 shots among other things. After a year of really no change, my neurologist referred me to a university medical center neurologist to get a second opinion. The new doctor performed another NCV, which showed a conduction block and slowing velocities. He told me that everyone gets numbness, to stop exercising, and only worry when the numbness becomes debilitating. Big help. I continued to have follow-up appointments with my original neurologist every 3 months and finally in May 2011, he decided to repeat the NCV because I was experiencing a more intense numbness in my toes on both feet and my ankles decided to join the party. After a brief look at the results, my doctor said that they were worse than they had been the year before and that they would lead him to a diagnosis. He assured me that I wasn’t going crazy and two days later he called and gave me the official diagnosis of CIDP. I began IVIg two weeks later and continue to get monthly infusions. Overall, I have noticed improvement since beginning the IVIg, especially in the last 6 months. I have 2-3 numb free weeks during the month and when I do have numbness, it’s less intense. I also feel stronger – I can go up the stairs without my legs feeling like jell-o when I reach the top.
I thought I was moving in the right direction until I started experiencing pain last month. I have found that it doesn’t matter what shoes I wear or how long I’m on or off my feet, they hurt. It’s a stabbing pain at its worst but mostly it’s just a deep achiness…the kind you get when you are on your feet too much or wear the wrong shoes. Sometimes the pain will go all the way up my legs. I was hesitant to do so because I was thinking I had overdone it and didn’t want to come off as complaining, but went ahead and asked my doctor about it after it continued for 3 weeks. He said that it could be another CIDP symptom. I had an infusion last week and it helped with the pain initially but as the week progressed, it’s come back. If it doesn’t get better over the weekend, I am supposed to make an appointment with my doctor to possibly change my treatment plan.
Here are my questions:
1. Is there anyway to distinguish CIDP pain from tired muscles aches and pains?
2. If the pain is CIDP related, would the IVIg help more than it did?
3. Is pain medicine the only way to treat the pain?
I know that I need to ask my doctor these questions as well, but I thought I’d check in and see what your experiences are. Thanks for listening!
February 2, 2013 at 7:57 pm
Hi Maddie – Some answers….
1) I don’t have CIDP but my 11 year old daughter does. I asked her how she distinguishes CIDP pain vs achy muscles. She said that when she’s just achy her whole leg (for example) will hurt. If it’s CIDP, she says she feels the pain in small random spots in the same muscle. She said, on her thigh, she might feel the pain in 3-4 different places & each spot is about the size of a quarter. She says it’s very intense & painful.
2) It’s hard to say how much the IVIG will help. It is different at each infusion. Some infusions would seem to help my daughter more than others.
3) I don’t really know much about pain meds as my daughter only took Motrin for the pain. Rx pain meds were offered but I didn’t like the idea of putting my, then, 4 year old on them.
You said that you get monthly infusion but that you only have 3 weeks without pain. I would suggest that you get your infusion before that pain starts. The myelin is starting to get damaged before the pain starts – so I would say try to get treatments before the 3 week mark. Also, it might be a good idea to get a loading dose of IVIG and then change your treatment plan to more frequent infusion.
February 2, 2013 at 10:16 pm
Sharp pains certainly can be a symptom of active CIDP. There’s no confusing it with normal “aches and pains.” It’s like being sliced with a knife. I took strong pain meds for this when my disease was active, but went off them as soon as possible when I went into recovery. Two years out, I still have constant pain in my feet and occasional slicing pain as well, but I just live with it. I think it’s best to avoid constant reliance on pain meds, if possible.
AnonymousFebruary 3, 2013 at 4:28 pm
Thanks Kelly and GH! I really don’t like the idea of taking pain medicine either and hope that we can look into other ways of managing the pain first. After all this time, I thought I had finally figured out what my “new normal” is…silly me. 😉
Kelly – Thanks for the suggestion about changing my infusion schedule. I’ve been tracking my symptoms on a calendar since beginning IVIg and will organize my “data” better to share it with my doctor when I see him. Hopefully it will help support more frequent infusions. Thank your daughter, too, for sharing what she feels. I hope that she is doing well!
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