Reply To: CIDP pain

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.

Kelly