Hi..Another newie from UK

Hi All.

Been meaning to spend some time on this forum.

I was diagnosed with CIDP about 3 years ago now although had been suffering various problems for many years, the diagnosis process was rather slow and went freom my local Dr through to my local hospital and now a specialised unit in London.

I have to say compared to others my symptons dont seem to bad and I lead a reasonably full life, I have aches and pains in arms/legs/hands now and again and my my grip strength is noticeablly declined and find things like doing up buttons quite hard.

Overall over the last few years my symptons have changed a bit from overall pain which has lessoned but I am certainly weaker in grip, etc....but main problem ios sudden bouts where I am in a lot of pain and unable to hardly move for a few days, these bouts are rareish, perhaps 3-4 times a year and I basically just 'sit it out' and it gets better, Im just getting over a 'bout' that has lasted 5 days (the longest), anyone else something similar and/or can recommend painkillers/tips, I try Ibuprofen pills and gels but they dont help much, best relief is lots of hot baths.

Ive had course of steriods, which helped temporarily but no lasting effect, IvIG was fine, no side effects and I could tolerate it being turned up full but utlimately didnt do much.

Would be great to hear others experiences, especially if in UK.


I'm so happy for you that CIDP has not been too hard on you and overall the meds have worked well for you. I'll not rehash all my CIDP experience here, its in my profile for everyone (and my) amusement. Summary. 18 months, diagnosis 3 weeks ago, foot drop, weak legs, short walking distance, lousy balance, and occasional breathing problems. Each day I get up and go to work, happy that I'm on this side of the dirt!